tag:blogger.com,1999:blog-53621133643496993262024-03-14T04:51:21.891-04:00The New "Normal": Living with AutismJourney of a Mom of two amazing children on the spectrumJennyhttp://www.blogger.com/profile/06479192285933054835noreply@blogger.comBlogger435125tag:blogger.com,1999:blog-5362113364349699326.post-31566112931024602832019-12-08T22:06:00.000-05:002019-12-08T23:28:35.305-05:00Is Ignorance Bliss?<div dir="ltr" style="text-align: left;" trbidi="on">
This picture popped up on my Facebook memories this morning because tomorrow is Nathan's 10th birthday. I look at this picture and all I can feel is my joy in that moment. Don't get me wrong, 15 minutes earlier I had been running around dressing both kids, recovering from a hot flash and looking for my maternity pants since it turned out I still needed them, while praying my eyeliner hadn't fallen behind the sink in the 3 months since I had last used it, but at this moment....bliss<br>
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There are days when I silently beg to go back to this moment, to this feeling, and to....not knowing. Of course this can never ever happen, but I can't help but think of how much present day me would appreciate the chance to experience this all over again. To allow the weight of what is to dissipate and live in the moment of what could be, even for a few minutes. </div>
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I look at his beautiful, perfect fingers, and nose, and lips; his sweet hair that was actually my color for a whole month before it fell out. I think about his sweet disposition, his amazing sleep (to be fair, anything felt amazing after big brother), how easy he was to feed. He was a content, easily comforted baby. </div>
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The mother in this picture simply had no idea of the journey she was embarking upon. She had no idea at all that her life was headed in a direction that would teach her and challenge her as much as it has.<br>
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The mother in this picture had no idea that over the next 10 years she would:</div>
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<li>cry an ocean of tears</li>
<li>question every decision she had ever made about her own health</li>
<li>wonder countless times what she did to cause her beautiful baby to endure such challenges</li>
<li>beg, a lot- doctors, therapists, teachers, and mainly God</li>
<li>lose many of her friends' support as she navigated this new world</li>
<li>sleep less than 4 hours in a row every night. For. 10. years.</li>
<li>spend more time with therapy providers on a daily basis than any of her family and more money on this therapy each month than she did on her first apartment</li>
<li>subject her beautiful son to injections, IV treatments, EEG's, sleep studies, ekgs, a ridiculous number of blood draws, endless developmental testing, dietary restrictions, literally hundreds of supplements, and close to 20 doctors.</li>
<li>end her marriage</li>
<li>lose any sense of herself for a long, long time</li>
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I look at her and I wonder how she would have reacted if she had known then what I know now. I think about what this picture may have looked like. Do I think she would have felt this blissful? I have to be honest with myself and say no. I think she would have been terrified. So maybe ignorance is bliss?</div>
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With all of that said, the woman in the picture also had no idea that over the next 10 years she would:</div>
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<li>cry another ocean of tears each time her son mastered a new word, which at times took years</li>
<li>question every "norm" put in place for all of our children- medical, educational, developmental, and social</li>
<li>wonder countless times how she would ever do everything that her baby needed to help him endure his challenges, only to discover that she just WOULD</li>
<li>beg, a lot (let's be real here)</li>
<li>gain beautiful true friendships rooted in love and respect</li>
<li>learn how little material "things" matter when those things cannot provide what her child really needs</li>
<li>do absolutely anything, anything, to help her child thrive</li>
<li>slowly begin to find herself again.</li>
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And so... maybe it's not?</div>
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I love Nathan with an intensity that I had no idea existed. I love both of my children, don't get me wrong, and if you hurt either of them, well, just don't. The bond that Nathan and I share is extraordinary. Our communication is on such a deep level that words are almost extraneous at this point. There are times (so. many. times) when I am overcome with sadness watching typical children Nathan's age, wishing he could do all of the same things, but then I also experience moments of almost feeling sorry that the moms of these kids don't get to experience the special nature of my bond with Nathan with their own children.</div>
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My son cannot yell "mom come here". But he can yell DRIIIIIINK, up the stairs 35 times in 2 minutes until I get my ass down there and get his drink. Or occasionally walk up the stairs and drop his cup in my lap and just stare at me like I am a moron.</div>
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My son cannot tell me "mom I don't want to go to school", but he can hide in his trampoline and look at me with his "side eye" and laugh like a hyena while yelling "no, I don't" when I try to climb in to take him out to get him on the bus.</div>
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My son cannot tell me what he did at school, but he does get off of the bus every day and jump into my arms and pull my arm around him the whole way home, while we repeat to each other "good day".</div>
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My son cannot tell me he needs me to hold him, but he can pull my arms around him and grab them and put them back if I move an inch. He can press his face to mine and stare at me so soulfully that it brings tears to my eyes.</div>
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My son cannot tell me he is in pain. I just know.</div>
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My son cannot tell me he loves me. But he did spend 10 minutes at his 10th birthday party touching my face, and looking at me in a way that made others stop and stare. He does climb into my bed each morning and snuggle up against me while we kiss each other's noses. </div>
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So, do I think ignorance is bliss? Well first of all, I no longer think I was ignorant, I think I was naive. I have learned so much from this little boy, and we still have so far to go. These are the faces of two people in the know. We work hard together and have gotten through so much.<br>
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Probably the most important thing I have learned is that my heart can stretch, bend, twist, and turn in ways I never even imagined. My heart can withstand whatever it needs to, to support, love, and accept my child in the way that he needs.<br>
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I think this quote says it best...<br>
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<a class="title" data-author="David Levithan" href="https://www.azquotes.com/quote/479805?ref=ignorance-is-not-bliss" id="title_quote_link_479805" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: 0px 0px; background-repeat: initial; background-size: initial; color: #333333; display: block; font-size: 1.1em; line-height: 24px; margin: 0px 1em 0px 0px; padding: 0px; text-decoration-line: none; vertical-align: baseline;"><br></a></div>
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Jennyhttp://www.blogger.com/profile/06479192285933054835noreply@blogger.com1tag:blogger.com,1999:blog-5362113364349699326.post-36763390601380469102018-10-29T20:34:00.001-04:002018-10-29T20:34:43.593-04:00Autism On The Road<div dir="ltr" style="text-align: left;" trbidi="on">
I cannot believe that I am sitting here after the whirlwind of the last 36 hours choosing to write. I had forgotten how therapeutic it can be, and how much it can help me process things. Not to mention, it's an easy way to update all of you at once.<br />
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I took Nate to a new specialist today. The doctor is a 5 hour drive from us, so we went down yesterday and stayed in a hotel last night so that we would be "rested". HA! So Nate went to bed at 5:30 this evening. Why? Because he woke for the day at 12:30 AM. It may have had something to do with the woman in the adjoining room who was shouting into her phone about "brick red" vs "plain red" shirts so loudly that I started silent screaming back "go for brick red and SHUT UP". Either way, she got hers, since Nate was up loudly stimming for the rest of the night. I would feel bad but....I don't. She got a few hours of my life. You're welcome. Hotel rooms and autism honestly just do not mix. I had forgotten. People go there to rest and sleep. Two things kids with autism and their parents just don't do. So that was fun.<br />
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Welcome to autism on the road. You think you have it down. You know how to handle your child's idiosyncrasies. And you do- at home, in their environment, even running errands. Packing for a trip when your child has autism is kind of like packing when you have a newborn. I found myself wondering if bringing a yoga ball would be excessive- hint, it wouldn't have been, and I regret not bringing it. I find myself wishing I could straight cath myself in the car because taking my son out of the car and into a bathroom and then returning to the car could cause world war 3. It's no different than grocery shopping really. If I take Nate, I have to be uber organized- returning to an aisle for a second time is a trigger- we are not moving "forward" and he can't handle that. Leaving the car and getting back in is a no-no. When I was finally at bursting and decided the meltdown would be worth it, I let him pick out a bag of Cheetos and go to town just so I could relieve myself. Did it stop the meltdown from happening? NO. But it was worth a shot. This eventually led to Nate slapping me about 10 times in the hotel lobby when we arrived because we were in another new setting and we had gotten out of the car AGAIN and clearly were not home. And then him trying to kick me in the face when I took off his shoes in our unfamiliar hotel room. Dinner? Well crap. There is no going out to get dinner. Are you suggesting we leave the hotel room, get in the car, drive to another new setting, get out of the car, eat, get back into the car and then drive back to the place that is not home? I don't think so!!!! The silver lining is that Panera delivers in Virginia. Praise God. However the presentation of pajamas at bedtime led to another meltdown because it was confirmation that we were not going home. He eventually passed out on top of me after crying himself to sleep.<br />
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He's still pretty cute, even after all of that</div>
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I was super ready to get to the doctor this morning and get it over with. Nate looked like he was dancing out of the hotel he was so happy we were leaving. Victory! So you can imagine his response when we pulled up to yet another place that wasn't home, and to top it off, a medical office. More hitting of mom, a couple of bites to his wrist in the lobby. The staff was great, but here's where I get serious for a moment. This doctor sees autism patients and offers a very holistic approach. For this portion of her practice she doesn't take insurance and she spends hours with each patient. She continues to function as a general pediatrician as well. So in the waiting room were....typical children and parents. Infants. Kids getting routine strep tests and chatting with their parents. And me and Godzilla. I was listening to a mom complain to her husband about their baby's sleep. I was listening to a mom tell her child to cough during the strep test so she wouldn't gag. And I will be honest- I wanted to strangle these parents. I wanted to scream at them and let them know how good they have it. I wanted to tell them to shut the hell up. I don't normally have this urge. I feel jealous. I always feel jealous. When I see posts from friends about their typically developing kids' accomplishments, it frequently makes me cry. I'm not going to lie. But today...</div>
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Today I had sat in my car at this doctor's office for 20 minutes before going in. Sobbing. I couldn't get a handle on my emotions. I didn't want to take him in. I didn't want the same old song and dance of "do this" and "try that" that leaves me feeling completely overwhelmed and hopeless. I didn't want to go into this office, knowing that this doctor has a fabulous reputation, and lose hope yet again. Because I didn't feel like there would be anywhere left to go. This morning I had the feeling that I no longer have the strength to stay on this roller coaster. It was one thing when Nate was "just" developmentally delayed. But aggression and self-harm, constant tantruming, and the feeling that his life is just torture for him? This is the most emotionally exhausting, and honestly damaging thing that I have ever been through. If I went in to yet another office and felt like they were clueless? I felt like I was almost ready to give up. And I couldn't face that. </div>
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But I'm a mom. So too bad, right ladies? I got Nate out of the car (he threw himself on the ground for the record). I went in- to typical baby and child la-la land. And I felt like if I saw another typically developing child today I was going to pull my hair out. </div>
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They took us to the way back room (we are always taken to the way back room, so his screams won't be heard by as many people). And the nutritionist and doctor came in. These women were like an old married couple, communicating without words, just looks- "hey does that remind you of that case...?" "yeah, he needed this, maybe Nate needs that too". They noticed on our paperwork that Nate is down to about 6 foods. They noticed the deficiencies and imbalances in his lab work. Which by the way, almost all kids with autism have. Normally this is the point where I am told that I need to change Nate's diet completely (which I already did 6 years ago with little effect) and add about 30 oral supplements to a sippy cup of juice that I am supposed to magically get him to drink. Tada! I knew today was different when they said to me, "well clearly with how much he is restricting, oral options are out right now". </div>
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Gasp. Are you suggesting that you don't want me to be a super human magical medication administrator anymore? That I don't need to find a way to Houdini these meds into my child when even the nurses at Sheppard Pratt had to admit defeat? We talked about other routes of administration, about prioritizing and diagnosing the main problems. They had ideas. Realistic and practical ones. The doctor acknowledged that it would be futile to try oral supplements because there would be no way of knowing if he received a therapeutic dose in his current state. I have been saying this FOR.EV.ER. </div>
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They agreed that PANDAS seemed likely although it is difficult to tell if he has all of the symptoms because of his limited communication. I explained his temporary improvements and relapses and the doctor asked how he was getting his antibiotics over the summer. ORALLY. And did he always take them? Of course not! By the time we left the hospital in fact, he had mastered "fake sipping" and it took me a full month just to get him to take his sleep medications effectively again. The doctor said it was time to nip the oral component in the bud and give him an injection of antibiotics. And she did. And if we see change, she is recommending we do this monthly for several months, while adding an antifungal (which he actually will take orally). There are several other things that we will be starting and trying. All things that we can actually DO for Nathan even if he won't swallow most medications. It sounded like a plan.</div>
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He still got them though. They may know autism better than most, but he still got them. They wanted to move him to another room for the injection because they didn't want him to associate the back room with pain. I gritted my teeth and said that I really thought it would be fine, but they insisted. Yeah- they did the grocery store thing. We left a room and did not exit the building- BIG MISTAKE. No, he was not crying about the needle (he honestly doesn't mind them that much), but transitioning him unnecessarily is just never the right approach. We got through it, and I'm pretty sure they'll never suggest that again.</div>
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As a side note, because I think it's important for people to understand- this awesome appointment with someone who listens? Was $1200 out of pocket. And that is the norm. That is what autism parents are expected to do. That is the only way. After 7 years of this I am just being honest. These doctors who are willing to examine every angle of the issue? They don't take insurance. It sucks. But I held out as long as I could, I went to "discounted" private practitioners, or the unicorn who did take insurance (he retired). With Nate in his current state, I am done economizing. Sometimes you have to bite the bullet- and apply for lots and lots of grants. </div>
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Nate literally laughed most of the way home. See this joyful child?</div>
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Five hours in the car and not a peep! I know what your burning question is and no I did not stop for the bathroom. Not pressing my luck. We pulled in at home and he giggled. I thought we were in the clear. Jack and his dad were there waiting. And they witnessed the epic meltdown that he had the minute he walked in the door. It was like he was holding it in as long as he possibly could and then as soon as it was "safe", wham! He cried and screamed and kicked and hit, and bit for nearly 40 minutes. Until he fell asleep.</div>
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I feel like I've been run over by a mac truck. </div>
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But it was a good trip.</div>
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Jennyhttp://www.blogger.com/profile/06479192285933054835noreply@blogger.com2tag:blogger.com,1999:blog-5362113364349699326.post-12371997537237090932018-10-19T11:36:00.002-04:002018-10-19T22:30:52.897-04:00Believe Me<div dir="ltr" style="text-align: left;" trbidi="on">
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<div style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Calibri;">Believe me</span></div>
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<span style="font-family: Calibri;"><span style="font-family: inherit;">It sounds so simple doesn’t it?<o:p></o:p></span></span></div>
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<span style="font-family: Calibri;"><span style="font-family: inherit;">I have been my child’s mother, his primary caregiver, and
his main means of communication for nearly 9 years.<span style="mso-spacerun: yes;"> </span>I know every inch of him; I know what he
needs most times before he ever says it.<span style="mso-spacerun: yes;">
</span>I know when he is upset, I know when he needs space, I know when he
needs to be held and cuddled.<o:p></o:p></span></span></div>
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<span style="font-family: Calibri;"><span style="font-family: inherit;">And I know when things have changed.<o:p></o:p></span></span></div>
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<a href="https://lh3.googleusercontent.com/-H2Vt09pu2yo/W8n2emCtEQI/AAAAAAAAcJM/tKbDLqONNtkLPtQUq00TmdqzWhFb0nEpQCHMYCw/s1600/%255BUNSET%255D" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img alt="" border="0" height="320" id="id_ca1b_4210_927_a488" src="https://lh3.googleusercontent.com/-H2Vt09pu2yo/W8n2emCtEQI/AAAAAAAAcJM/tKbDLqONNtkLPtQUq00TmdqzWhFb0nEpQCHMYCw/s320/%255BUNSET%255D" style="height: auto; width: 353px;" title="" tooltip="" width="240"></span></a></div>
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<span style="font-family: Calibri;"><span style="font-family: inherit;">I know when my baby is not my baby anymore.<span style="mso-spacerun: yes;"> </span>I know when he is hurting.<span style="mso-spacerun: yes;"> </span>I know when he is on the edge of losing
it.<span style="mso-spacerun: yes;"> </span>I know when it is coming.<span style="mso-spacerun: yes;"> </span>And I know what is coming.<o:p></o:p></span></span></div>
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<span style="font-family: Calibri;"><span style="font-family: inherit;">So why do I have to convince every single person involved in
Nathan’s care and life that things really are as bad as I say they are?<span style="mso-spacerun: yes;"> </span>Why must I produce pictures, or video, or god
forbid wait for them to witness things for themselves before I am taken
seriously?</span></span></div>
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<span style="font-family: Calibri;"><span style="font-family: inherit;">Had he ever hurt me before? NO</span></span></div>
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<span style="font-family: Calibri;"><span style="font-family: inherit;">Did I ever report self-harm before? NO <o:p></o:p></span></span></div>
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<span style="font-family: Calibri;"><span style="font-family: inherit;">Did I ever tell you he would eat nothing at all before?<span style="mso-spacerun: yes;"> </span>NO<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
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<span style="font-family: Calibri;"><span style="font-family: inherit;">Did I EVER tell you that I was becoming afraid of the love
of my life?<span style="mso-spacerun: yes;"> </span>Absolutely not.<o:p></o:p></span></span></div>
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<span style="font-family: inherit;"></span><br></div>
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<span style="font-family: Calibri;"><span style="font-family: inherit;">I just don’t understand why it is that when I explain these
drastic changes to his therapists, his medical providers, his teachers, his bus
drivers, and yes even our friends and family, they smile, nod, and declare they
love him, they have “a place for him” and they can handle it.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
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<span style="font-family: inherit;"></span><br></div>
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<span style="font-family: Calibri;"><span style="font-family: inherit;">Because I call bull shit.<o:p></o:p></span></span></div>
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<span style="font-family: inherit;"></span><br></div>
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<span style="font-family: Calibri;"><span style="font-family: inherit;">If I go through the experience of someone looking at me with
that “oh” expression on their face when they finally see what we have been
going through one more time I may lose my mind.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></span></div>
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<span style="font-family: Calibri;"><span style="font-family: inherit;">Did they think I was lying?<span style="mso-spacerun: yes;">
</span>Exaggerating?<span style="mso-spacerun: yes;"> </span>Looking for
attention?<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
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<span style="font-family: Calibri;"><span style="font-family: inherit;">I don’t want attention for me or for him, I want my son
back.<span style="mso-spacerun: yes;"> </span>I need someone to carry this ball
with me instead of playing a constant game of keep away.<span style="mso-spacerun: yes;"> </span>I need a practitioner to look at Nate and say
ok, I see him, I see the problem, we are going to get to work on this, and here
is how.<span style="mso-spacerun: yes;"> </span></span></span></div>
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<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"><span style="font-family: inherit;"></span></span></span> </div>
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<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"><span style="font-family: Calibri;"><span style="font-family: inherit;">I don’t need anyone to tell me that autism cannot be
medicated.<span style="mso-spacerun: yes;"> </span>He is almost 9.<span style="mso-spacerun: yes;"> </span>He was on nothing before this summer.<span style="mso-spacerun: yes;"> </span>I do not want to medicate his autism.<span style="mso-spacerun: yes;"> </span>I want to keep him safe from himself.<span style="mso-spacerun: yes;"> </span>I want him to be comfortable enough in his
own skin that he doesn’t feel the need to bite himself when he is upset.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></span></span></div>
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<a href="https://lh3.googleusercontent.com/-izAhxM78-9M/W8n2etvZhlI/AAAAAAAAcJQ/D_DJDgmWaHkntSh6v6ljuGB2Udqd7JMzQCHMYCw/s1600/%255BUNSET%255D" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img alt="" border="0" height="320" id="id_d84b_2c14_99a0_988f" src="https://lh3.googleusercontent.com/-izAhxM78-9M/W8n2etvZhlI/AAAAAAAAcJQ/D_DJDgmWaHkntSh6v6ljuGB2Udqd7JMzQCHMYCw/s320/%255BUNSET%255D" style="height: auto; width: 353px;" title="" tooltip="" width="240"></span></a><a href="https://lh3.googleusercontent.com/-uGBWfZ6wM5U/W8n2fANHYlI/AAAAAAAAcJY/5RmKjU2KPJMJMi4maEAFtlqlKiVyhfgugCHMYCw/s1600/%255BUNSET%255D" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img alt="" border="0" height="320" id="id_9401_a41_2382_16a5" src="https://lh3.googleusercontent.com/-uGBWfZ6wM5U/W8n2fANHYlI/AAAAAAAAcJY/5RmKjU2KPJMJMi4maEAFtlqlKiVyhfgugCHMYCw/s320/%255BUNSET%255D" style="height: auto; width: 353px;" title="" tooltip="" width="240"></span></a></div>
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<span style="font-family: inherit;"></span> </div>
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<span style="font-family: Calibri;"><span style="font-family: inherit;">I don’t need anyone to tell me that he has gut issues.<span style="mso-spacerun: yes;"> </span>I concur.<span style="mso-spacerun: yes;">
</span>And guess what? This fiasco started after I attempted to address these
issues with a supposedly amazing probiotic.<span style="mso-spacerun: yes;">
</span>For us it was most certainly not amazing.<span style="mso-spacerun: yes;"> </span>And until a professional looks at him and
tells me what they think will be safe, I am not rocking this boat.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span><br>
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<span style="font-family: Calibri;"><span style="font-family: inherit;">I don’t need anyone to tell me that he is having
anxiety.<span style="mso-spacerun: yes;"> </span>I KNOW.<span style="mso-spacerun: yes;"> </span>We have matching anxiety at this point.<span style="mso-spacerun: yes;"> </span>I can feel it radiating off of him almost
constantly.<o:p></o:p></span></span></div>
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<span style="font-family: inherit;"></span><br></div>
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<span style="font-family: Calibri;"><span style="font-family: inherit;">And please do not tell me that now that you understand his
behaviors (after one episode) you know how to manage them and everything will
be fine.<span style="mso-spacerun: yes;"> </span>Because his behaviors change
every day, and then he has none for weeks, and then he has the worst episode he
has had in 3 months (like yesterday).<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
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<span style="font-family: Calibri;"><span style="font-family: inherit;">You are not the one who puts your child on the bus with tears in your eyes several mornings a week.<span style="mso-spacerun: yes;"> </span>You are not the
one who meets the afternoon bus and is asked to come pull your child out of his
seat because they are afraid to touch him.<span style="mso-spacerun: yes;">
</span>You are not the one who keeps your phone volume on at all times just in
case.<span style="mso-spacerun: yes;"> </span>You are not the one who made the
gut-wrenching decision to put your child in the hospital only to be told by the
staff that he gave them “baby fever” (aka why the hell is he even here, could
you belittle our situation anymore??) and have him sent home in the same boat he
went in on 6 weeks later.<span style="mso-spacerun: yes;"> </span>You are not
the one who faces friends and family with hopeful looks on their faces, asking
how things are going.<span style="mso-spacerun: yes;"> </span>You are not the
one who opts to keep your mouth shut, because you don’t want their hearts to
break too.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
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<span style="font-family: Calibri;"><span style="font-family: inherit;">Things are the same.<span style="mso-spacerun: yes;">
</span>Or maybe worse.<span style="mso-spacerun: yes;"> </span>I am becoming
numb.<span style="mso-spacerun: yes;"> </span>I am doing my best.<span style="mso-spacerun: yes;"> </span>And I am not making any of this up.<o:p></o:p></span></span></div>
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<span style="font-family: "calibri";"><span style="font-family: inherit;">Believe me.<span style="mso-spacerun: yes;"> </span>I wish I
was.</span><span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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Jennyhttp://www.blogger.com/profile/06479192285933054835noreply@blogger.com1tag:blogger.com,1999:blog-5362113364349699326.post-67137131405109970902018-04-28T17:14:00.000-04:002018-04-28T17:14:05.384-04:00Cynical, Realistic, or Well-adjusted?<div dir="ltr" style="text-align: left;" trbidi="on">
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<a href="https://lh3.googleusercontent.com/-slwks901vms/WuTZ9xHlouI/AAAAAAAASJw/eOVTU4qiWFIEaYkkBMf8fWoE5dW_6k69ACHMYCw/s1600/%255BUNSET%255D" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="" border="0" height="200" id="id_4bf8_2128_fb53_b03d" src="https://lh3.googleusercontent.com/-slwks901vms/WuTZ9xHlouI/AAAAAAAASJw/eOVTU4qiWFIEaYkkBMf8fWoE5dW_6k69ACHMYCw/s200/%255BUNSET%255D" title="" tooltip="" width="150" /></a></div>
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I took the boys to the park today- one that we used to go to all the time when they were little- before autism, and quite often when Jack was about 2 1/2 or 3 and Nate was a baby. We have been here lots of times between so I don’t know why today felt so different, but it did. It may be solely because it is the first time we have come when it was this crowded in forever. Maybe it’s because there were so many small children here.<br />
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When we arrived, like before we got out of the car, Nate had a meltdown. He hates transitions, but he also doesn’t like being outside so much lately. His sensory issues- visual and auditory have hit a new level and he spends a lot of time with his hands over his ears and/or eyes. I managed to get him to walk to the farm portion of the park but the minute we arrived he threw himself on the ground and screamed. I calmly put my hands over his ears and he held them there for a good 10 minutes. Brilliant mama forgot the headphones- again. Shit happens. I followed our usual deescalation routine- here is one area where he is a typical guy- it involves food 😜. He slowly acclimated and eventually he was okay. </div>
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I was feeling pretty good about things. Jack was educating the world about Boer goats, I was reminding him to find farm employees in their green shirts to talk to about them (hey they asked for it!). My hands were on Nate's ears, he was eating chips. And then I looked up.</div>
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All eyes were on us. How about that? Through all the screaming, me yelling to Jack, “are we making good choices??” and me rifling through my purse in search of my food arsenal I completely missed the fact that we were absolutely making a scene. That the families with a baby in a stroller and a 2 year old toddling around were watching us- ok staring. I wondered what they were thinking- what they should be thinking is “that chick can think fast on her feet AND her kid sure knows a shit ton about goats!” Somehow I doubt that was it. In a way, I felt bad that their seemingly idyllic farm visits, “honey look a goat!” were interrupted by my kiddos issues. That’s the part of me that used to keep me at home with the kiddos- afraid to take them out together.</div>
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<a href="https://lh3.googleusercontent.com/-Q4SGJPnq24g/WuTaBbXkD7I/AAAAAAAASKM/_de4rpo8hacsnV5hyKsRspITi623-JP1gCHMYCw/s1600/%255BUNSET%255D" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="" border="0" height="200" id="id_bea2_99d_930_64d9" src="https://lh3.googleusercontent.com/-Q4SGJPnq24g/WuTaBbXkD7I/AAAAAAAASKM/_de4rpo8hacsnV5hyKsRspITi623-JP1gCHMYCw/s200/%255BUNSET%255D" title="" tooltip="" width="150" /></a><a href="https://lh3.googleusercontent.com/-ot4YN3JSwpA/WuTZ_dZMvfI/AAAAAAAASJ8/-oBRO6uZqc4S2YB2JjMEBzssCDt-12ITQCHMYCw/s1600/%255BUNSET%255D" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img alt="" border="0" height="200" id="id_e917_9edc_3957_5672" src="https://lh3.googleusercontent.com/-ot4YN3JSwpA/WuTZ_dZMvfI/AAAAAAAASJ8/-oBRO6uZqc4S2YB2JjMEBzssCDt-12ITQCHMYCw/s200/%255BUNSET%255D" title="" tooltip="" width="150" /></a><br />
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There is this other lady emerging though. The one who thinks “I didn’t think this would be MY life either people, but guess what???” The one who thinks “this is reality, this absolutely could be you in 8 years and you have no idea”. I want to clarify- this comes with no bitterness, this is simply me reflecting on the days when I was that Mom- with the two little ones, and had no idea what was coming. I am also not saying that what was coming was horrible. I am merely saying that THIS life, well, it was not even a thought in my mind on a list of seemingly endless possibilities. I was not expecting to have one child who never ever stopped talking and was an endless source of knowledge about everything I never wanted to learn about, and another child who I was endlessly begging to talk. I was not expecting that we would stand out everywhere that we go. That the sweet couple with their baby in a swing, clearly for the first time, would look over and see Nate stimming like crazy on the swing next to them.</div>
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<a href="https://lh3.googleusercontent.com/-O8grmGmdZd4/WuTZ90TWMbI/AAAAAAAASJ0/wxHpaEGeeUoj-XUpGpm0YyeZl6Hl-mhZACHMYCw/s1600/%255BUNSET%255D" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="" border="0" height="200" id="id_4118_7953_ca28_f0a8" src="https://lh3.googleusercontent.com/-O8grmGmdZd4/WuTZ90TWMbI/AAAAAAAASJ0/wxHpaEGeeUoj-XUpGpm0YyeZl6Hl-mhZACHMYCw/s200/%255BUNSET%255D" title="" tooltip="" width="150" /></a></div>
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And let me tell you- 4 years ago I never thought that I could be relatively ok with it. Yep, that is my sweet boy flapping and jumping up and down on the swing. You have no idea how awesome he is. Your baby is adorable- mine is a warrior who works harder than anyone you will ever meet.<br />
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See, I started out the same way as those families that I was encountering. With my tiny boys exploring the world, with no clue of what would come next. Today I felt wise. Not sad that my kids are getting so big, not angry that they have autism (well no more than usual), but just in the know. When a mom shrieked at her son not to touch his baby sister after touching a goat while simultaneously diving for her hand sanitizer, it took everything I had to keep from bursting out laughing. If my children were able to interact with each other that naturally, I wouldn't care if they licked a goat first and then kissed each other. Just saying.<br />
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When I was pushing Nate on the swing and happened to glance up and see Jack talking animatedly to a mom with a baby strapped to her chest? I thought, well at least she can't run away! In the past I would have tried to get him to stop. I would have felt embarrassed. When I was the mom with the baby strapped to her chest, I would have wondered where the heck that kid's mom was. But see, now I know the answer. I am right over here- I am watching his every move- and I am thankful that someone else is listening to him for a minute because quite frankly, my ears are ringing. So thank you. <br />
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And you know what? We had a great time! What more can I ask for? I have an answer- peace. And I felt that today. And that felt AMAZING<br />
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Jennyhttp://www.blogger.com/profile/06479192285933054835noreply@blogger.com3tag:blogger.com,1999:blog-5362113364349699326.post-59466336019589605682017-11-18T16:57:00.001-05:002017-11-18T16:57:50.116-05:00Giving Thanks for Support<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: inherit;">Hi.<o:p></o:p></span></div>
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</span></div>
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<span style="font-family: inherit;">It’s been over a year, so I feel like most importantly I
need to say hi.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: inherit;">I was going to stop blogging completely, but every time I
come close, someone contacts me about one of my old posts with questions, or
just to thank me for expressing something they were feeling.<span style="mso-spacerun: yes;"> </span>And so I hang in there for a while
longer.<span style="mso-spacerun: yes;"> </span>I figured eventually I might
have something else to say.<span style="mso-spacerun: yes;"> </span>And finally
I do.<span style="mso-spacerun: yes;"> </span>The timing is perfect- Thanksgiving!<span style="mso-spacerun: yes;"> </span>Before I get into it, I feel the need,
without getting into details, to say that my life today is nothing like my life
a year ago.<span style="mso-spacerun: yes;"> </span>While the last 6 years have
all been difficult, this past year has left me reeling and questioning
everything in my life.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: inherit;">Except that at the same time, it has shown me some really
important things.<span style="mso-spacerun: yes;"> </span>I have come to realize
that there are many many people out there looking out for my family.<span style="mso-spacerun: yes;"> </span>People who have been there every step of the
way, people who have expected nothing in return and have just loved us.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: inherit;">We all have times when we have literally “reached capacity”.<span style="mso-spacerun: yes;"> </span>Our brains and our hearts have no room left
to absorb any more pain.<span style="mso-spacerun: yes;"> </span>Have you ever
shown up on a friend’s doorstep and just her smile has made you burst into
tears?<span style="mso-spacerun: yes;"> </span>Like really ugly cry?<span style="mso-spacerun: yes;"> </span>For you know, an hour?<span style="mso-spacerun: yes;"> </span>I hadn’t had that happen since college, until
this past year.<span style="mso-spacerun: yes;"> </span>What I need to do today
is call out the friends and family (and teachers, and therapists, and
neighbors, and strangers) who have been there for our family during a dark time.<span style="mso-spacerun: yes;"> </span>These are not people who come swooping in and
fix things (no one can do that), these are people who:<o:p></o:p></span></div>
<div style="text-align: left;">
<span style="font-family: inherit;">
</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-align: left;">
<span style="font-family: inherit;">BRING WINE<o:p></o:p></span></div>
<div style="text-align: left;">
<span style="font-family: inherit;">
</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-align: left;">
<span style="font-family: inherit;">Stand in front of me to hide me while I stand in a corner
sobbing.<o:p></o:p></span></div>
<div style="text-align: left;">
<span style="font-family: inherit;">
</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-align: left;">
<span style="font-family: inherit;">Respond when I message them in the middle of the night without
missing a beat<o:p></o:p></span></div>
<div style="text-align: left;">
<span style="font-family: inherit;">
</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-align: left;">
<span style="font-family: inherit;">Reach out to support me even when they haven’t seen me in 8
years<o:p></o:p></span></div>
<div style="text-align: left;">
<span style="font-family: inherit;">
</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-align: left;">
<span style="font-family: inherit;">Sit on the phone with me for an hour, on a weekend, and talk
me through one of the most difficult situations of my life.<o:p></o:p></span></div>
<div style="text-align: left;">
<span style="font-family: inherit;">
</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-align: left;">
<span style="font-family: inherit;">Sneak things into my son’s backpack at school that will help
our family.<o:p></o:p></span></div>
<div style="text-align: left;">
<span style="font-family: inherit;">
</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-align: left;">
<span style="font-family: inherit;">Take my son out to dinner so I can work late<o:p></o:p></span></div>
<div style="text-align: left;">
<span style="font-family: inherit;">
</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-align: left;">
<span style="font-family: inherit;">Show up with 2 hours notice to watch the boys so I can
attend a very important appointment<o:p></o:p></span></div>
<div style="text-align: left;">
<span style="font-family: inherit;">
</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-align: left;">
<span style="font-family: inherit;">Fly halfway across the country to be there for us during a
difficult weekend.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div style="text-align: left;">
<span style="font-family: inherit;">
</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-align: left;">
<span style="font-family: inherit;">Drive hours in the car while 8 months pregnant to hold my
hand.<o:p></o:p></span></div>
<div style="text-align: left;">
<span style="font-family: inherit;">
</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-align: left;">
<span style="font-family: inherit;">Listen to my crying on a daily basis even though they have
never even met me in real life.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div style="text-align: left;">
<span style="font-family: inherit;">
</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-align: left;">
<span style="font-family: inherit;">Bring food to my family when they are insanely busy
themselves.<o:p></o:p></span></div>
<div style="text-align: left;">
<span style="font-family: inherit;">
</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-align: left;">
<span style="font-family: inherit;">Fix my son’s broken zipper when the very sight of it broken
makes me cry (yes, I know)<o:p></o:p></span></div>
<div style="text-align: left;">
<span style="font-family: inherit;">
</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-align: left;">
<span style="font-family: inherit;">Replace every light bulb in our home with energy efficient
ones.<o:p></o:p></span></div>
<div style="text-align: left;">
<span style="font-family: inherit;">
</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-align: left;">
<span style="font-family: inherit;">Literally disassemble my elliptical machine to get it down
the stairs.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div style="text-align: left;">
<span style="font-family: inherit;">
</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-align: left;">
<span style="font-family: inherit;">Bring 10 lbs of flour and sugar to my house so I start
working on my annual pumpkin bread!<o:p></o:p></span></div>
<div style="text-align: left;">
<span style="font-family: inherit;">
</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-align: left;">
<span style="font-family: inherit;">Continue to pull every ounce of ability out of our children
on a daily basis.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div style="text-align: left;">
<span style="font-family: inherit;">
</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-align: left;">
<span style="font-family: inherit;">Tell me over and over again that I am a good mom, even
though I never believe it.<o:p></o:p></span></div>
<div style="text-align: left;">
<span style="font-family: inherit;">
</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-align: left;">
<span style="font-family: inherit;">I don’t know how to thank all of these people for the kindness
and compassion they have shown us.<span style="mso-spacerun: yes;"> </span>I
know I can never repay them, and that this list is also completely
inadequate.<span style="mso-spacerun: yes;"> </span>There have been so many
other times when someone has just popped up with an “are you ok” text- they may
not realize it, but there are days when that little gesture is the poke I needed
to keep going that day.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>Or just called (ok we’re moms let’s be real-
texted) and asked us to get out of the house to do something.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div style="text-align: left;">
<span style="font-family: inherit;">
</span></div>
<div class="MsoNormal" style="margin: 0in 0in 10pt; text-align: left;">
<span style="font-family: inherit;">I don’t have the right words this time, so just thank
you.<span style="mso-spacerun: yes;"> </span>We are a definite work in progress,
we are struggling, but at the same time we are pushing through.<span style="mso-spacerun: yes;"> </span>Thank you.<o:p></o:p></span></div>
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Jennyhttp://www.blogger.com/profile/06479192285933054835noreply@blogger.com9tag:blogger.com,1999:blog-5362113364349699326.post-71477937058582400382016-09-09T17:11:00.000-04:002016-09-09T17:11:08.185-04:00What A Difference!<div dir="ltr" style="text-align: left;" trbidi="on">
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<br />
It has been nearly 2 months since I have written. I have been afraid- afraid to say out loud that things have turned a corner. I am still afraid, as I know we are likely still in the honeymoon phase at Jack's new private school. But you know what?? What the hell!? <br />
<br />
Our bright cheery boy is coming back to us. I really don't know how else to describe it. We are three weeks into Jack's new placement, and while I expected to feel a bit of relief in knowing that the staff at this school was better equipped to handle Jack's challenges, I hardly expected to see him feeling so.... EMBRACED. There is really no better word to describe it. And HE feels it. <br />
<br />
Today both dad and I were waiting at the front door when he got off the bus. I asked him how his day was. He said "amazing". It hit me- he used to say that ALL THE TIME. I haven't heard it in a good two years. I am no fool, I know I won't hear it everyday, but today it brought tears to my eyes. <br />
<br />
It's sad that it took what it did to finally get my son into a setting where he is accepted. I had so much anxiety putting him on the bus the first day that I sat on our doorstep and cried for a good 20 minutes after he was gone, and he's in 4th grade- not kindergarten! It was a release for me though, of all the tension of getting him to this place, of all the fear I have had over the last year. It was the beginning of all of that just melting away. He has an hour bus ride each way now, which was a big concern for us- he has a lot of anxiety regarding the bus and changes in routine. The other day I told him it was time to get on the bus and he said, "oh man!" and then he said "oh wait, I like the bus!". His bus driver is great with him, and other than the fact that he has picked up continuously singing "bird is the word" from one of the older kids on the bus, it has been a very positive experience. In fact, one day a week ago the bus driver literally forgot Jack- it's a new stop on his route this year and after he made one of his old stops, he just kept going. He did turn around and come back and get him- but amazingly, Jack completely kept his cool. I don't know how to explain it, but it's like he just KNOWS that this is his place. There is no other way I can explain the rapid changes we are seeing.<br />
<br />
Some of the differences at this school are so simple, they are not for "special needs" kids so much as best practices for all kids that have gone by the wayside in public school- everyone has a snack time, everyone works on a token system, everyone gets breaks. I remember when I first moved to NJ in 5th grade, one of the classes there worked on a token system- everyone wanted to be in that class- all kids can benefit from a reward system- it makes me wonder why it isn't more common (other than the amount of work involved in doing this for HUGE class sizes in public schools). All kids can benefit from all of these changes frankly- my kid just really needs them in order to be successful at this point in his life. Because everyone in the school is operating on the same system, he doesn't feel singled out, he doesn't feel "special", he just feels like another student, and that is what he has always wanted. Frankly, we "sell" school to kids as their jobs- why shouldn't they earn money for it??? Jack earns money on his "debit" card every day for behavior, which he can spend in the school's stores (all run by students, he is an employee at a store as well) on Fridays. I get a "balance sheet" every day showing how he did, how many dollars he earned, where he didn't earn, etc. I have to say that there has not been any mention of any aggressive verbiage or behavior since I believe his second day. It didn't take long. He just needed this.<br />
<br />
This came from one of his teachers:<br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">He is more and more
comfortable with us, which is allowing his wonderful personality to come out. I
have really enjoyed talking to him about planes and animals, he is always
surprising me with fun facts about his favorite things! We are still getting to
know Jack, but this week I have seen him more interested and willing to work
with me. In math, while he might get frustrated, he is quick to use a suggested
strategy and then try again. He is really impressing us with how willing he is
to try these new and more difficult things. I have really enjoyed our time with
Jack so far, I look forward to getting to know him better this year! Thank you
for sharing him with us! Have a wonderful Wednesday.</span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;"></span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">After last year's constant worry and negative feedback, yes, I did indeed cry. My baby is in a good place. And all 9 IEP meetings were absolutely worth it for even one day of him experiencing this!!!!</span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;"></span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">If I could trust him not to internalize only the swear words in this at this point in his life, I would absolutely share this with Jack right now. I have spent so much of my life trying to "make" other people like me, and so much of my life as a mom trying to help my kids fit in. I am realizing that neither are likely to be effective. I am at peace with that. Happiness- that's what we're going for.</span><br />
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Jennyhttp://www.blogger.com/profile/06479192285933054835noreply@blogger.com17tag:blogger.com,1999:blog-5362113364349699326.post-52511971106633107342016-07-18T15:51:00.003-04:002016-07-18T16:10:33.743-04:00When The Educators Need To Be Educated<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: "times new roman";">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: inherit;">I have been struggling over the last 6 weeks, trying to find
a way to describe what has been going on with Jack.<span style="mso-spacerun: yes;"> </span>I am not someone who jumps on my blog and
bashes people.<span style="mso-spacerun: yes;"> I also have been repeatedly thanked for my "grace" by the school system throughout this situation, and I do want to maintain my goal of taking the high road. </span>However I do try to be
honest about our experiences as a family.<span style="mso-spacerun: yes;">
</span>And I do want to share what we have been going through.</span></div>
<span style="font-family: inherit;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;">Before I do, I have a confession.<span style="mso-spacerun: yes;"> </span>When Jack first started school, and we
were successful in keeping him mainstreamed for several years, I really didn’t
understand what all of these other parents were talking about.<span style="mso-spacerun: yes;"> </span>We struggled in getting Jack the help he
needed because he was labeled “high functioning”, but with the help of an
advocate, we were able to work through that, or at least to an acceptable
extent.<span style="mso-spacerun: yes;"> </span>So why were so many parents of
special needs kids calling public school a nightmare?<span style="mso-spacerun: yes;"> </span>Fighting so hard with staff?<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></span></span></div>
<span style="font-family: inherit;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;">All it took was one bad experience.<span style="mso-spacerun: yes;"> </span>As a special needs mom, my children have
attended 8 different elementary schools, (and they are only 6 and 9) not because of problems, but because
different programs are just housed in different places.<span style="mso-spacerun: yes;"> </span>For the most part, we have had completely
positive experiences.<span style="mso-spacerun: yes;"> </span>Even Jack’s
initial elementary school, which has a reputation for being particularly
difficult on special needs families, was over all very supportive.<span style="mso-spacerun: yes;"> </span>When he was moved to another program this
January, it was not because he was failing to meet or make progress towards his
IEP goals, it was because the teachers found he made the most progress in a
small group setting, which this new program was said to offer for all core
curriculum.<span style="mso-spacerun: yes;"> </span>And to be fair, the program
did “offer” this.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></span></span></div>
<span style="font-family: inherit;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;">I wish I could pinpoint what happened.<span style="mso-spacerun: yes;"> </span>Where it all went wrong.<span style="mso-spacerun: yes;"> </span>All I can really say is that the new school
was not prepared to handle my son.<span style="mso-spacerun: yes;"> </span>That
my son went from making progress in all IEP goals in a mainstream program (since pre K), to a
“more supportive environment” and his progress completely tanked, per their
report.<span style="mso-spacerun: yes;"> </span>I say per their report, because
we saw a very different child at home, one who made great strides in his ABA
goals, one who continued to be able to socialize with his friends from his old
school with some support, one who successfully participated in an adaptive
team sport, and enjoyed it!<span style="mso-spacerun: yes;"> </span>In
school?<span style="mso-spacerun: yes;"> </span>I was told that he was not “capable”
of “being with his peers”.<span style="mso-spacerun: yes;"> </span>He was fully
pulled out for all academics, and often pulled out of the pull out (to a one on
one setting instead of small group).<span style="mso-spacerun: yes;"> </span>He
was isolated- not able to eat in the cafeteria at lunch, something that was
NEVER an issue, not even for snack time in pre-k.<span style="mso-spacerun: yes;"> </span>Something that my 6 year old “severely
autistic” son does daily at his school, because he is supported.<span style="mso-spacerun: yes;"> His IEP progress report in June showed that he was not making adequate progress toward any IEP goals except....handwriting. Which by the way has always been the bane of his existence. </span>No matter what justification was given to me,
my opinion remains that the school did not want to deal with my son.<span style="mso-spacerun: yes;"> </span>They did not like that he, as my husband so eloquently
put it “upset the apple cart”.<span style="mso-spacerun: yes;"> </span>This was
a new, small program, and when I toured the school back in December I was
shocked by how quiet the classroom was- my son is not quiet.<span style="mso-spacerun: yes;"> </span>He is not naughty- but he is not quiet.<span style="mso-spacerun: yes;"> </span>I think this was not appreciated by some of
the staff.<span style="mso-spacerun: yes;"> </span>I think his need to socialize
and unfortunately disrupt some of these other children was resented.<span style="mso-spacerun: yes;"> </span>I think that any and all possible behavioral
issues were emphasized and examined under a microscope.<span style="mso-spacerun: yes;"> </span>When your child is at home on the weekend and
you ask him to go to his room and do something and suddenly for the first time
in his life he responds with “is that a threat?”, it is clear that someone has
been asking him that same question.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></span></span></div>
<span style="font-family: inherit;">
</span><br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: "calibri";"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;">I am not a mom who puts her son up on a pedestal.<span style="mso-spacerun: yes;"> </span>I have always advocated for more services for
him, I have recognized his struggles and taken action as much as humanly
possible.<span style="mso-spacerun: yes;"> </span>That being said, this spring
was the first time I have ever experienced the feeling of my son seeming to be
targeted.<span style="mso-spacerun: yes;"> </span>Things that he would say out
of frustration in his old school setting were interpreted in the worst possible
way at the new school and perceived as actual threats.<span style="mso-spacerun: yes;"> </span>And while he definitely was trying to express
an emotion or frustration, it was never taken into account that he was
scripting, something he has done since the age of 18 months old.<span style="mso-spacerun: yes;"> </span>He pulls statements from programs he has
watched or books he has read, and puts them into his dialogue if it seems
appropriate to his situation.<span style="mso-spacerun: yes;"> </span>When he
was younger it worked against him because he was using sophisticated vocabulary
and after people heard that, their expectations of his intelligence became
super high.<span style="mso-spacerun: yes;"> </span>Now it works against him
again because he is not just spewing facts anymore, but also trying to find a
way to express his emotions, something that is very hard for many kids on the
spectrum.<span style="mso-spacerun: yes;"> </span>He chooses a quote that sounds
threatening, and is reprimanded as though it was an independent thought.<span style="mso-spacerun: yes;"> </span>Yes, it was inappropriate, I get that.<span style="mso-spacerun: yes;"> </span>But was it meant in the spirit in which it
was received?<span style="mso-spacerun: yes;"> </span>Ummmm, no way.<span style="mso-spacerun: yes;"> </span>I promise that my 8 year old is not likely to
seek revenge on you, BUT he does like to watch My Little Pony, and they do say
that in an episode….<o:p></o:p></span></span></span></span></div>
<span style="font-family: inherit;">
</span><br />
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<span style="font-family: "calibri";"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;">I mean, when he gets upset at home and cries he says “tears
run down his spiny cheeks”.<span style="mso-spacerun: yes;"> </span>No, he does
not have spiny cheeks, he is quoting from a book about a little porcupine that
we read when he was two years old.<span style="mso-spacerun: yes;"> </span>He is
telling me “I am sad, so I am crying.”<span style="mso-spacerun: yes;">
</span>And I get that, so I don’t look for whiskers, or god forbid quills!<o:p></o:p></span></span></span></span></div>
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<span style="font-family: "calibri";"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;">I’m not suggesting he doesn’t have any behavioral issues,
because he does.<span style="mso-spacerun: yes;"> </span>As our children get
older, they are not maturing at the rate of their peers, which SHOULD be a duh
for all parties involved in their care, since they are “special
educators”.<span style="mso-spacerun: yes;"> </span>Our children’s atypical behavior,
while it has not changed, does stick out more than it used to.<span style="mso-spacerun: yes;"> </span>And in a new setting- they are penalized for
it.<span style="mso-spacerun: yes;"> </span>Inappropriately.<span style="mso-spacerun: yes;"> </span>They are judged harshly, they are treated
like “problems.” What I am saying is that while it’s not fair, and it’s not
right, we as parents have to prepare ourselves for this eventuality.<span style="mso-spacerun: yes;"> It should not happen, but in a situation where someone does not know, or take the time to get to know our children, it is a distinct possibility. </span>We went to his most recent IEP meeting (last Thursday) and it
was suggested by the central representative that he would be ok in a type II
special education program (which means still housed in a mainstream school,
with the opportunity to interact with typical peers, as opposed to a type I,
which is a separate day school).<span style="mso-spacerun: yes;"> </span>My
response was this- he absolutely should have been fine- however after his and
this family’s experiences this past spring, he needs time to recover. He needs
to feel supported and have time build his self-esteem.<span style="mso-spacerun: yes;"> </span>When you are treated like an "issue” in a
setting where you used to feel accepted and even loved, it can be very
damaging.<span style="mso-spacerun: yes;"> </span>We are just now, in summer
school, working through his tears each morning because he does not want to go
back to school.<o:p></o:p></span></span></span></span></div>
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<span style="font-family: "calibri";"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;">As a parent, this is not only heartbreaking, it is
maddening.<span style="mso-spacerun: yes;"> </span>I, as Jack’s mom, have been
traumatized by this experience.<span style="mso-spacerun: yes;"> </span>My level
of trust in the school system has plummeted.<span style="mso-spacerun: yes;">
</span>I am at risk of becoming “that mom.”<span style="mso-spacerun: yes;">
</span>The one that feels the need to drop in for “surprise visits” to ensure
my son isn’t locked in a closet somewhere.<span style="mso-spacerun: yes;">
</span>The one who calls every time my son comes home saying something negative,
to make sure everything is ok.<span style="mso-spacerun: yes;"> </span>I do not
want to be “that mom”.<span style="mso-spacerun: yes;"> </span>I never was.<span style="mso-spacerun: yes;"> </span>But my son has the right to an education in
the least restrictive environment possible, and he has the right to expect fair
treatment.<span style="mso-spacerun: yes;"> </span>And without question, he was denied both of these things this past spring.<span style="mso-spacerun: yes;"> </span>And he is
my child who can talk to me!<o:p></o:p></span></span></span></span></div>
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<span style="font-family: "calibri";"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;">At the IEP meeting with his school back in May, something was said
that I will never, as a special needs mom, forget.<span style="mso-spacerun: yes;"> </span>In the presence of the least restrictive
environment specialist, the school behavioral specialist, our IEP advocate, and
Jack’s BCBA, we were told that this school’s program was there to support
children with learning differences.<span style="mso-spacerun: yes;"> </span>We
were told that they were not “equipped to handle autism and all the support
that is needed for autism.”<span style="mso-spacerun: yes;"> </span>Our BCBA
still brings this statement up frequently- as someone who has been in special
education for over 20 years, she was shocked into silence herself.<span style="mso-spacerun: yes;"> </span>I want to say this, for the record.<span style="mso-spacerun: yes;"> </span>None of us are- equipped to handle autism
when first we encounter it.<span style="mso-spacerun: yes;"> </span>I can assure
you that John and I were not equipped to handle autism.<span style="mso-spacerun: yes;"> </span>And yet, here we are, doing it!<span style="mso-spacerun: yes;"> </span>Autism is being diagnosed at a head spinning
rate- a rate that is increasing each and every year.<span style="mso-spacerun: yes;"> </span>If your school does not become equipped to
handle autism, you will be doing a vast number of amazing children a horrible
disservice.<span style="mso-spacerun: yes;"> </span>My son is phenomenal- and he
will be back in a mainstream school in the next few years god willing.<span style="mso-spacerun: yes;"> </span>More education for mainstream educators is
clearly needed, and needed quickly.<span style="mso-spacerun: yes;"> </span>My
son did not deserve to come away from this experience feeling like he was a
problem.<span style="mso-spacerun: yes;"> </span>And it will take years to get
him past this.<span style="mso-spacerun: yes;"> </span>Equip yourselves, because
if you are supposed to help children with “learning challenges”, I can guarantee
you will be seeing more children with autism in your program</span>.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></span></div>
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<a href="https://www.autismspeaks.org/blog/2016/06/21/open-letter-teachers-who-have-students-autism"><span style="color: blue; font-family: "calibri";">https://www.autismspeaks.org/blog/2016/06/21/open-letter-teachers-who-have-students-autism</span></a><o:p></o:p></div>
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Jennyhttp://www.blogger.com/profile/06479192285933054835noreply@blogger.com16tag:blogger.com,1999:blog-5362113364349699326.post-86409426572655792632016-05-06T09:38:00.003-04:002016-05-06T09:38:40.862-04:00Jack's Birthday- A Much Needed Reminder<div dir="ltr" style="text-align: left;" trbidi="on">
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Yesterday was my big boy's 9th birthday. NINE! It seems impossible, and yet he is creeping up on me height-wise (not the hardest thing to do haha). Jack has been having so much trouble behaviorally with peers and teachers, we have been so worried about him. Well, we still are. <br />
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As most autism parents know, particularly Asperger's parents, birthdays are not necessarily something we look forward to. Other kids birthday parties are hard enough- John recently took Jack to one and was texting me a blow by blow of Jack's struggles- my response? Yes honey its like riding a bleeping roller coaster while going through the stages of grief all wrapped into one bleep package and tied with a snake. So as you can imagine, Jack's own birthday celebration felt like walking into a landmine. Last year he had a hard time at his birthday party- we had lots of kids there, we were at a farm, and he was just overstimulated. The thing that put him over the top and caused a meltdown was getting a present he REALLY liked. So what do you do about that?<br />
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I decided that in light of all the difficulties he is currently having, I was going to surround him with only people who make him feel safe. People who, if he had a meltdown, would not be shocked, people who would be supportive. This consisted of his grandparents, his BCBA, his and Jack's ABA techs, and his two best friends from his old school and their families. It actually ended up being a pretty crowded house. Mommy was having some sensory overload issues of her own!<br />
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<a href="https://lh3.googleusercontent.com/-XqXLgZFKrQs/VyydHNHrtiI/AAAAAAAARHI/usPLRzsz6sg/s640/blogger-image-1851949733.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://lh3.googleusercontent.com/-XqXLgZFKrQs/VyydHNHrtiI/AAAAAAAARHI/usPLRzsz6sg/s200/blogger-image-1851949733.jpg" width="150" /></a>Jack? He did beautifully. Thinking about it this morning brings tears to my eyes. He was able to wait until everyone arrived before having cake with no issues. He was able to verbalize that he didn't want the birthday song (a long standing trigger for him- the applause more than the song). And because everyone around him knew him, they weren't surprised and were just fine with basically standing silently while he blew out the candle- and they didn't cheer- which is crucial. No one asked why the cake was decorated with the koala brothers, an African crested porcupine, a rooster, and a sopwith camel. It was JACK'S cake, so duh, lol. He was able to sit and eat cake with all of his presents looming without losing it. This is a big deal for any kid really, for Jack it was huge.<br />
<a href="https://lh3.googleusercontent.com/-OyVb2lZsWQ8/VyydGUDr7rI/AAAAAAAARHE/2xQa2UuPzc8/s640/blogger-image-227245832.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://lh3.googleusercontent.com/-OyVb2lZsWQ8/VyydGUDr7rI/AAAAAAAARHE/2xQa2UuPzc8/s200/blogger-image-227245832.jpg" width="200" /></a><br />
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He was soooooo happy to see his friends. He was bouncing around everywhere, but made sure to introduce his "best bud" to his mimi (they actually went trick or treating together last October, but whatever). "Mimi, I need for you to meet my good friend ___" It was priceless.<br />
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<a href="https://lh3.googleusercontent.com/-Z07xtO8kbnA/VyydPfZ4axI/AAAAAAAARHQ/CRFs0qPt_lk/s640/blogger-image--154677233.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://lh3.googleusercontent.com/-Z07xtO8kbnA/VyydPfZ4axI/AAAAAAAARHQ/CRFs0qPt_lk/s200/blogger-image--154677233.jpg" width="200" /></a></div>
<a href="https://lh3.googleusercontent.com/-m2OgnzZ68gE/VyydQJWJI3I/AAAAAAAARHU/-gaGsd-bliw/s640/blogger-image--396711604.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://lh3.googleusercontent.com/-m2OgnzZ68gE/VyydQJWJI3I/AAAAAAAARHU/-gaGsd-bliw/s200/blogger-image--396711604.jpg" width="200" /></a>Another amazing milestone for him? Opening gifts in front of others. Every holiday, he and I go through the do's and don'ts of receiving gifts. And it has been getting better, he hasn't said "I hate that" in a long time. But he usually doesn't pause to look at his gifts either- he rips through them, doesn't look to see who they're from, etc. And yes, I know all kids do this, but it's just more extreme with Jack. He started out that way, but I was able to talk him into sitting on the couch (for the most part) and allowing me to hand him his gifts. And with this process he did start to actually see what he was receiving- and he looked at things. He looked through books, he pointed to things he liked. He looked at clothes. There were still a few moments, but over all he did very very well.<br />
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He got two "die cast" world war I airplanes. He did at one point tell someone not to touch or tickle him when he was holding his die casts. Because doesn't every 9 year old say that? He was probably having flashbacks to the die cast sopwith camel he received when he was 3- I had to glue it back together no less than 3 times that day- it was NOT a good day. But in the end, he let his granddad hold one of his planes, they even played "war" for a couple of minutes.<br />
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<a href="https://lh3.googleusercontent.com/-BZXTpODH3ow/VyydFtVOkTI/AAAAAAAARHA/96ojty2U3m0/s640/blogger-image--1108507232.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://lh3.googleusercontent.com/-BZXTpODH3ow/VyydFtVOkTI/AAAAAAAARHA/96ojty2U3m0/s200/blogger-image--1108507232.jpg" width="200" /></a>Last night was a CRUCIAL reminder for his dad and me. When he feels supported and secure, he is the same Jack we have always known and loved- funny, and personable, empathetic and yes, hyper. He is in there- we just have some things to work through. <br />
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Jennyhttp://www.blogger.com/profile/06479192285933054835noreply@blogger.com5tag:blogger.com,1999:blog-5362113364349699326.post-80490614421339169382016-04-29T14:18:00.001-04:002016-04-29T14:18:14.903-04:00Jack Davis- an oldie but a goodie<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I love being a mom, best job I've ever had. Jack is going to be 5 very soon. So I am feeling a little nostalgic. Cannot believe our lanky little boy used to be nothing more than a little bean...he has changed our lives in every way imaginable. <br>Jack's story:<br>Mommy and daddy wanted you very much. Mommy had been dreaming of having a baby her whole life (ask Grammy!). But first, we were taking a trip to Italy! And THEN we were going to settle in and hope for the best. You, my love, had other plans! Mommy had just started a new job and was working in the office for awhile before she started working from home, and on her second day in Elkridge, there was a blood drive. I always used to donate, so thought nothing of it. When I was done, I stood up and wham, down I went....completely passed out. I felt really bad for several days and this had never happened to me before. What was the problem? So on my lunch break I popped by Target and picked up a pregnancy test, just to be sure that wasn't the issue. Took it, saw nothing, dropped it in my purse and didn't think about it again. Welp, the next day on my way to lunch, I went to grab my keys, and accidentally pulled out the test. Ummmmm......what was that other line doing there??? Apparently you wanted to go to Italy with mommy and daddy!!! And you did.....mommy missed out on some great wines, but daddy took one for the team and tried them ALL for me. Sheesh! You were worth it!<br></span><div class="separator" style="text-align: start; clear: both;"><a href="http://3.bp.blogspot.com/-b_ce9Qeq6_M/T5QgNK57SVI/AAAAAAAAAak/QLDNqJgdvHw/s1600/207350_19235251736_612891736_154694_162_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font color="#000000"><img border="0" height="240" src="http://3.bp.blogspot.com/-b_ce9Qeq6_M/T5QgNK57SVI/AAAAAAAAAak/QLDNqJgdvHw/s320/207350_19235251736_612891736_154694_162_n.jpg" width="320"></font></a></div><div style="text-align: start;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Our first "official" portrait....mommy at 16 weeks in Sorrento, Italy</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">You were a pretty easy baby to grow....other than some major pukey moments....namely on our plane trips to and from Italy. Especially when a woman on the way there had a heart attack and mommy ended up taking care of her! We ended up rerouted to Newfoundland to drop her off at a hospital and that flight lasted no less than 13 hours. Never fear, mommy got a lovely gift basket from the airlines for her efforts.<br></span><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-oID1SQ_kWxs/T5SMtmd1BbI/AAAAAAAAAgM/dWkvhXyIATs/s1600/hpqscan0001.jpg" imageanchor="1" style="text-align: start; clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><font color="#000000"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><img border="0" height="211" src="http://1.bp.blogspot.com/-oID1SQ_kWxs/T5SMtmd1BbI/AAAAAAAAAgM/dWkvhXyIATs/s320/hpqscan0001.jpg" width="320"></span></font></a></div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span><div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-NHW6liqupJs/T5SMwTGbV0I/AAAAAAAAAgU/GyYK8uJmJCo/s1600/hpqscan0002.jpg" imageanchor="1" style="text-align: start; clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><font color="#000000"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><img border="0" height="197" src="http://3.bp.blogspot.com/-NHW6liqupJs/T5SMwTGbV0I/AAAAAAAAAgU/GyYK8uJmJCo/s320/hpqscan0002.jpg" width="320"></span></font></a></div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">You were due on May 11th and I was bound and determined that you would not be late, I had a wedding to be in 3 weeks after that. I was a walking machine! On May 4th I started feeling contractions, no biggie, that had been happening for awhile. I called your Aunt Sarah just to chat, and told her I was having more Braxton-Hicks. We talked for about 45 minutes. Before we got off the phone she said, you know, you just had 4 contractions while we were on the phone, you might want to start timing those. It was about 11:30 in the morning.....so I started writing them down while I was working....I still have those pieces of paper. They were steady all day, but not increasing, and not painful. I was getting pretty excited though....maybe this was the real thing. Daddy was supposed to go to happy hour with coworkers that night, I told him he might as well go, nothing major doing at home. Mommy took a long walk by herself, and noticed things were picking up a bit. In true expectant mommy fashion, I came home and in a panic, put together the "brag books" I had been planning for Grammy and Mimi, just in case this was my last opportunity to do so before Mother's Day. Good thing I did. Because all of the sudden....PAIN. I called daddy and said "what's up? feel like maybe making your way home?" So he came home, and we took a nice long walk....our last as a family of two. Two neighborhood dogs jumped up on me....I think daddy almost barked at them....he was feeling a little protective that night :)</span></div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Since I had been a labor and delivery nurse, I was bound and determined to avoid one of those "false alarm" visits to the maternity suite. When I went in, it was going to be the real thing! We knew the rule--- contractions 5 minutes apart, lasting 1 minute for 1 hour. Mommy waited through 2 hours before she called....even then her OB was skeptical. But in we went....and we didn't leave! Mommy didn't want any medicine, but panic set in, and in went the epidural. I didn't know about hypnobirthing yet.....I recommend it to EVERYONE. I won't go through all the gorey details of your delivery....but I will say that daddy, as you know, fancies himself pretty old-fashioned and had been mumbling about not wanting to be in the delivery room. I told him that was not an option, and he then said he was going to stay at the head of the bed and wanted to see nothing. Ummmm...yeah. Your daddy was right there, cheering me on, and didn't miss a thing. And he didn't pass out either. When you made your entrance into the world, you didn't cry (although both mommy and daddy did). The doctor put you right on my chest and you just stared at me, without a sound. It was one of the most precious moments of my life. But everyone was a little worried that you didn't scream....so they took you over to the warmer to check you out. They suctioned you, they gave you a little oxygen. Still no crying. But you were breathing, and looking all around. You apparently needed to take it all in and didn't want to ruin the moment with all that racket those other annoying newborns make. Mommy couldn't see you during that time and has never been more worried in her life. Those moments are what pushed me to avoid an epidural the next time around...I wanted to be able to get up and check on my baby, make sure everything was ok. </span></div><div><a href="http://3.bp.blogspot.com/-mHfHLyzsIM8/T5QleyMd0EI/AAAAAAAAAas/NhQv6_BsR-Y/s1600/232323232%257Ffp385%253Enu%253D32%253A%253B%253E8%253A8%253E%253B58%253EWSNRCG%253D32358644%253A9%253B%253A5nu0mrj.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><font color="#000000"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><img border="0" height="240" src="http://3.bp.blogspot.com/-mHfHLyzsIM8/T5QleyMd0EI/AAAAAAAAAas/NhQv6_BsR-Y/s320/232323232%257Ffp385%253Enu%253D32%253A%253B%253E8%253A8%253E%253B58%253EWSNRCG%253D32358644%253A9%253B%253A5nu0mrj.jpg" width="320"></span></font></a></div><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-jkFXv_93TfA/T5QlhdkNnHI/AAAAAAAAAa8/Il3ndyRFELE/s1600/232323232%257Ffp393%253Enu%253D32%253A%253B%253E8%253A8%253E%253B58%253EWSNRCG%253D32358644%253A9%253B%253A%253Bnu0mrj.jpg" imageanchor="1" style="text-align: start; clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><font color="#000000"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><img border="0" height="240" src="http://4.bp.blogspot.com/-jkFXv_93TfA/T5QlhdkNnHI/AAAAAAAAAa8/Il3ndyRFELE/s320/232323232%257Ffp393%253Enu%253D32%253A%253B%253E8%253A8%253E%253B58%253EWSNRCG%253D32358644%253A9%253B%253A%253Bnu0mrj.jpg" width="320"></span></font></a></div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br><br></span><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span><a href="http://1.bp.blogspot.com/-Z8B3H-wAqBg/T5Qlh3dHTuI/AAAAAAAAAbE/Dqf6mW0GU2E/s1600/232323232%257Ffp396%253Enu%253D32%253A%253B%253E8%253A8%253E%253B58%253EWSNRCG%253D32358644%253C6%253C%253B5nu0mrj.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><font color="#000000"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><img border="0" height="240" src="http://1.bp.blogspot.com/-Z8B3H-wAqBg/T5Qlh3dHTuI/AAAAAAAAAbE/Dqf6mW0GU2E/s320/232323232%257Ffp396%253Enu%253D32%253A%253B%253E8%253A8%253E%253B58%253EWSNRCG%253D32358644%253C6%253C%253B5nu0mrj.jpg" width="320"></span></font></a></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br>Your aunt and uncle and mimi came to see you right after you were born. Your mimi was so proud to have her first grand baby! </span></div><div class="separator" style="text-align: start; clear: both;"><a href="http://4.bp.blogspot.com/-QloS9FctjGE/T5QljNycRFI/AAAAAAAAAbU/lLip2Slv1aM/s1600/232323232%257Ffp399%253Enu%253D32%253A%253B%253E8%253A8%253E%253B58%253EWSNRCG%253D32358644%253A9%253B%253A%253Cnu0mrj.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font color="#000000"><img border="0" height="240" src="http://4.bp.blogspot.com/-QloS9FctjGE/T5QljNycRFI/AAAAAAAAAbU/lLip2Slv1aM/s320/232323232%257Ffp399%253Enu%253D32%253A%253B%253E8%253A8%253E%253B58%253EWSNRCG%253D32358644%253A9%253B%253A%253Cnu0mrj.jpg" width="320"></font></a></div><div class="separator" style="text-align: start; clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="separator" style="clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">The hospital did this funny thing....after 2 days they told us we could take you home. Seriously? OK, I know I was a live-in nanny to an infant, that I am a nurse, that I have a sister who is 12 years younger than me who I spent a lot of time caring for....but couldn't these people see that I had no earthly idea what I was doing?? Below is your nursery...see? I was all "prepared"....cue the snickers. Grammy and grandad were still in California when you were born....daddy had just held a baby basically for the first time....mommy was terrified to take you home! But home we went....and now 5 years later, you're still alive, so we must be doing something right. </span></div><div style="text-align: center;"><div class="separator" style="clear: both;"><a href="http://1.bp.blogspot.com/-z4P33DAgShU/T5RJKVNBJcI/AAAAAAAAAdo/XS8va-TGfIc/s1600/232323232%25257Ffp387%25253Enu%25253D32%25253A%25253B%25253E8%25253A8%25253E%25253B58%25253EWSNRCG%25253D32358644%25253A9%25253B9%25253Anu0mrj.jpg" imageanchor="1" style="text-align: start; clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><font color="#000000"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><img border="0" height="150" src="http://1.bp.blogspot.com/-z4P33DAgShU/T5RJKVNBJcI/AAAAAAAAAdo/XS8va-TGfIc/s200/232323232%25257Ffp387%25253Enu%25253D32%25253A%25253B%25253E8%25253A8%25253E%25253B58%25253EWSNRCG%25253D32358644%25253A9%25253B9%25253Anu0mrj.jpg" width="200"></span></font></a></div><a href="http://2.bp.blogspot.com/-5tfwHN4g--g/T5RJKva1X4I/AAAAAAAAAdw/nsuO-d4pFIw/s1600/232323232%25257Ffp388%25253Enu%25253D32%25253A%25253B%25253E8%25253A8%25253E%25253B58%25253EWSNRCG%25253D32358644%25253A9%25253B9%25253Cnu0mrj.jpg" imageanchor="1" style="text-align: start; clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><font color="#000000"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><img border="0" height="150" src="http://2.bp.blogspot.com/-5tfwHN4g--g/T5RJKva1X4I/AAAAAAAAAdw/nsuO-d4pFIw/s200/232323232%25257Ffp388%25253Enu%25253D32%25253A%25253B%25253E8%25253A8%25253E%25253B58%25253EWSNRCG%25253D32358644%25253A9%25253B9%25253Cnu0mrj.jpg" width="200"></span></font></a></div><div style="text-align: start;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="separator" style="text-align: start; clear: both;"><font color="#000000"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><a href="http://3.bp.blogspot.com/-m-Vv3KN764w/T5RJKFTLiwI/AAAAAAAAAdg/PoQoqe89JRA/s1600/232323232%25257Ffp38%25253B%25253Enu%25253D32%25253A%25253B%25253E8%25253A8%25253E%25253B58%25253EWSNRCG%25253D32358644%25253C6%25253C%25253B6nu0mrj.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://3.bp.blogspot.com/-m-Vv3KN764w/T5RJKFTLiwI/AAAAAAAAAdg/PoQoqe89JRA/s320/232323232%25257Ffp38%25253B%25253Enu%25253D32%25253A%25253B%25253E8%25253A8%25253E%25253B58%25253EWSNRCG%25253D32358644%25253C6%25253C%25253B6nu0mrj.jpg" width="320"></a>look how tiny you were!</span></font></div><div class="separator" style="text-align: start; clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-iqPUy2u_P_w/T5RJJqbdwNI/AAAAAAAAAdY/Z1JMJMY0tp4/s1600/232323232%25257Ffp38%25253B%25253Enu%25253D32%25253A%25253B%25253E795%25253E948%25253EWSNRCG%25253D3235%25253A4%25253A73374%25253Bnu0mrj.jpg" imageanchor="1" style="text-align: start; clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><font color="#000000"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><img border="0" height="240" src="http://1.bp.blogspot.com/-iqPUy2u_P_w/T5RJJqbdwNI/AAAAAAAAAdY/Z1JMJMY0tp4/s320/232323232%25257Ffp38%25253B%25253Enu%25253D32%25253A%25253B%25253E795%25253E948%25253EWSNRCG%25253D3235%25253A4%25253A73374%25253Bnu0mrj.jpg" width="320"></span></font></a></div><div style="clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I love this picture of you next to daddy's hand.....<br><br>Early memories:<br><br>Your Aunt Helen seeing you for the first time and saying you looked like Uncle Joe (this was not a compliment, however, it was temporarily true....within days you were the most adorable baby ever)<br><br>The nurses in the hospital trying to comfort you, the doctor trying to comfort you, the lactation consultant trying to comfort you, grammy trying to comfort you....you cried for 12 hours your second day of life. Daddy and I have always thought that you were making up for your birth day.<br><br>Daddy driving 25 miles an hour the whole way home from the hospital (this is how we know he loved you right away!)<br><br><br>Riley the dog knocking over furniture in your nursery while trying to check you out.<br><br class="Apple-interchange-newline"><br>Daddy making Hamburger Helper Beef Stroganoff more times than mommy can count those first few weeks (playgroup ladies....THIS is how mommy meals came to be :) )<br><br>Daddy and I taking you for your first walk in the stroller.....I lifted the wheels over every bump.<br><br>Watching the clock until your next feeding because I was terrified that THIS was the time I wouldn't be able to nurse you (I also wanted to wear the nursing shield on a chain around my neck---- seriously freaking out)<br><br>Granddad and Aunt Kate looking at you through the window when granddad picked Kate up from college because Kate had mono and granddad had a sinus infection<br><br>Interviewing nannies...thinking one was way too young and inexperienced. Asked her to pick you up out of the swing and she opened the guard bar---hey, I didn't know that opened! (sigh)<br><br>Sitting upstairs in my office my first day back at work and crying the entire time. You, by the way, were perfectly fine.<br><br>Daddy and mommy freaking out that you were sucking your thumb and trying to "stop it". Note that your brother sucks his thumb....we encourage it.<br><br>You laying on your changing table for 30 minutes at a time staring at yourself in your little lion mirror.<br><br></span></div><div style="clear: both;"><div class="separator" style="text-align: start; clear: both;"><a href="http://2.bp.blogspot.com/-j1SRna8DRAE/T5RJJJHQFkI/AAAAAAAAAdQ/GhD34ZPXxvE/s1600/232323232%25257Ffp339%25253Enu%25253D32%25253A%25253B%25253E795%25253E948%25253EWSNRCG%25253D3235%25253A4%25253A733753nu0mrj.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font color="#000000"><img border="0" height="240" src="http://2.bp.blogspot.com/-j1SRna8DRAE/T5RJJJHQFkI/AAAAAAAAAdQ/GhD34ZPXxvE/s320/232323232%25257Ffp339%25253Enu%25253D32%25253A%25253B%25253E795%25253E948%25253EWSNRCG%25253D3235%25253A4%25253A733753nu0mrj.jpg" width="320"></font></a></div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div style="clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br><br></span></div><div class="separator" style="text-align: start; clear: both;"><a href="http://3.bp.blogspot.com/-jNIQEOHKCnc/T5SeMp_dS9I/AAAAAAAAAgc/P3bDhdJJkBE/s1600/207074_19235136736_612891736_154685_6038_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font color="#000000"><img border="0" height="236" src="http://3.bp.blogspot.com/-jNIQEOHKCnc/T5SeMp_dS9I/AAAAAAAAAgc/P3bDhdJJkBE/s320/207074_19235136736_612891736_154685_6038_n.jpg" width="320"></font></a></div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br>Almost anyone will tell you that you don't know what it is to be a parent until you become one. It's true. It didn't matter how much "child care" experience I had, I didn't have parenting experience. I didn't know that feeling of being one of the two people on earth responsible for a human life. The feeling is completely awe inspiring and overwhelming. So many new parents go into this experience thinking they know what it is all about (myself included), they see family members do it, they see friends do it, and assume they have a clue. They don't. The amount of love that we feel for you is indescribable. I would do anything for you, I would give up everything for you, you and your brother are everything to your daddy and me....<br>How did we go from this......<br></span><div class="separator" style="text-align: start; clear: both;"><a href="http://3.bp.blogspot.com/-z34_7mKict8/T5RfNisrHPI/AAAAAAAAAfY/lTQhCJN5_-E/s1600/232323232%257Ffp397%253Enu%253D32%253A%253B%253E8%253A8%253E%253B58%253EWSNRCG%253D32358644%253A9%253B%253A%253Anu0mrj.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font color="#000000"><img border="0" height="240" src="http://3.bp.blogspot.com/-z34_7mKict8/T5RfNisrHPI/AAAAAAAAAfY/lTQhCJN5_-E/s320/232323232%257Ffp397%253Enu%253D32%253A%253B%253E8%253A8%253E%253B58%253EWSNRCG%253D32358644%253A9%253B%253A%253Anu0mrj.jpg" width="320"></font></a></div><div class="" style="text-align: start; clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></div><div class="separator" style="text-align: start; clear: both;"><a href="http://4.bp.blogspot.com/-WXE8kfQBSjU/T5RfNKn_xfI/AAAAAAAAAfU/CuyQ8Ym0NKk/s1600/230066_26953386736_612891736_463917_8852_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font color="#000000"><img border="0" height="240" src="http://4.bp.blogspot.com/-WXE8kfQBSjU/T5RfNKn_xfI/AAAAAAAAAfU/CuyQ8Ym0NKk/s320/230066_26953386736_612891736_463917_8852_n.jpg" width="320"></font></a></div><div class="" style="text-align: start; clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">One!</span></div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br><br></span><div class="separator" style="text-align: start; clear: both;"><a href="http://4.bp.blogspot.com/-HaX0NoQgJtc/T5RhKWocj9I/AAAAAAAAAf8/EeM-AmFdf6I/s1600/3746_96306171736_612891736_1717126_3320165_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font color="#000000"><img border="0" height="240" src="http://4.bp.blogspot.com/-HaX0NoQgJtc/T5RhKWocj9I/AAAAAAAAAf8/EeM-AmFdf6I/s320/3746_96306171736_612891736_1717126_3320165_n.jpg" width="320"></font></a></div><div class="separator" style="text-align: start; clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Two!</span></div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span><div class="separator" style="text-align: start; clear: both;"><a href="http://3.bp.blogspot.com/-8k5kMq5lzYI/T5RhKN86MvI/AAAAAAAAAf0/xVA5QdD-d-k/s1600/31306_410242896736_612891736_4045199_8111081_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font color="#000000"><img border="0" height="240" src="http://3.bp.blogspot.com/-8k5kMq5lzYI/T5RhKN86MvI/AAAAAAAAAf0/xVA5QdD-d-k/s320/31306_410242896736_612891736_4045199_8111081_n.jpg" width="320"></font></a></div><div class="" style="text-align: start; clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Three!</span></div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br><br></span><div class="separator" style="text-align: start; clear: both;"><a href="http://1.bp.blogspot.com/-EW5kG7tmNL4/T5RhJb2ZRGI/AAAAAAAAAfs/ELUJx8ASZOw/s1600/221862_10150197588656737_612891736_6931775_1498721_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font color="#000000"><img border="0" height="320" src="http://1.bp.blogspot.com/-EW5kG7tmNL4/T5RhJb2ZRGI/AAAAAAAAAfs/ELUJx8ASZOw/s320/221862_10150197588656737_612891736_6931775_1498721_n.jpg" width="234"></font></a></div><div class="separator" style="text-align: start; clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Four!</span></div><div class="separator" style="text-align: start; clear: both;"><a href="http://2.bp.blogspot.com/-q-y_hcSTK50/T5RfOU5wKSI/AAAAAAAAAfk/NmxJtcIP3DA/s1600/photo%5B14.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><font color="#000000"><img border="0" height="320" src="http://2.bp.blogspot.com/-q-y_hcSTK50/T5RfOU5wKSI/AAAAAAAAAfk/NmxJtcIP3DA/s320/photo%5B14.JPG" width="239"></font></a></div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span><div style="text-align: start;"><span style="text-align: right; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> To this?????</span></div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br><br>We are so lucky to be your parents. I love everything about you- your smile, your kooky laugh, the way you turn around and give us that "look" when you know you are being naughty. your amazing robot, lobster, crab, and scorpion imitations. The way you make up animals like brontoscorpios (oh crap, I just googled it... <a href="http://en.wikipedia.org/wiki/Brontoscorpiohttp://">http://en.wikipedia.org/wiki/Brontoscorpiohttp://</a><a href="http://en.wikipedia.org/wiki/Brontoscorpio">en.wikipedia.org/wiki/Brontoscorpio</a>)<br>Ok, never mind. The way you teach us about animals that we never knew existed, ask us to make their sounds, then look at us like we are morons when we do it "wrong". The fact that you gobble up fish and asparagus and refuse spaghetti, and choose strawberries over ice cream. The way you say "mommy/daddy, I love you, you're my best friend" You usually want something, but honestly, we don't care, it's just so nice to hear. The way you shriek "get Natey!" every time we try to let him walk somewhere. You are so worried he's not going to follow us. The fact that you call me your princess every time I put on a dress, or come over to me and demand that I take my hair down so I look "beautiful". The way you scream "mommy is the driver" every time daddy goes anywhere near the driver's seat of mommy's car. Oh, and your genuine concern for Fergie and those "humps on her back" (do they hurt mommy? I won't touch them. If I ever see them I will just run away). Guess mommy better put Raffi on the stereo in the car from now on. You are an amazing, loving little boy. You are ten times smarter than either mommy or daddy. And you are going to keep us guessing....that is one thing mommy is completely sure of!</span><br style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Jennyhttp://www.blogger.com/profile/06479192285933054835noreply@blogger.com5tag:blogger.com,1999:blog-5362113364349699326.post-112426321633225652016-04-20T11:04:00.002-04:002016-04-20T11:04:30.556-04:00When the "Least Restrictive Environment" May Be Causing Harm<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Calibri;">Have you ever had a complete aha moment as a parent?<o:p></o:p></span></div>
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<o:p><span style="font-family: Calibri;"> </span></o:p><span style="font-family: Calibri;">No one ever gave me a guidebook for my kiddos, and as Jack’s
BCBA pointed out last night when we were talking, even if they had, it would
have been the wrong one </span><span style="font-family: Wingdings; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span><span style="font-family: Calibri;">.<span style="mso-spacerun: yes;"> </span>I have been struggling so much as a mom with
Jack’s behavioral issues, both at home, and particularly at school.<span style="mso-spacerun: yes;"> </span>How did he go from being a “pleasure” at his
old school to a constant behavioral problem at his new school?<span style="mso-spacerun: yes;"> </span>Did they withhold information at his old
school or sweep issues under the rug?<span style="mso-spacerun: yes;"> </span>Or
are they antagonizing him at his new school?<span style="mso-spacerun: yes;">
</span>I have come to the conclusion that it is likely somewhere in the
middle.<span style="mso-spacerun: yes;"> </span>I know that at his old school,
they had known him for years, and likely did brush some behaviors off as just “Jack
being Jack.”<span style="mso-spacerun: yes;"> </span>But I also feel that things
are moving in the wrong direction at his new school as well.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">So why?<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">What am I missing?<span style="mso-spacerun: yes;"> </span>I
felt like I was so careful to find a placement for Jack that would keep him in
his least restrictive environment, allow him to interact with his typical peers
absolutely as much as possible.<span style="mso-spacerun: yes;"> </span>I felt
strongly that this was what he needed because he had such good relationships
with his peers at his old school.<span style="mso-spacerun: yes;"> </span>I
think I may have been wrong.<span style="mso-spacerun: yes;"> </span>I forgot
some very important factors.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">I feel like an idiot- because
I couldn’t see the parallels between my son and myself until last night.<span style="mso-spacerun: yes;"> </span>I focus so much on his autism that his
anxiety, particularly his social anxiety becomes very secondary.<span style="mso-spacerun: yes;"> </span>But anxiety is the thing that he and I have
most in common. <span style="mso-spacerun: yes;"> </span>Particularly in social
situations.<span style="mso-spacerun: yes;"> </span>See, I understand fully his
desperate need to feel accepted, to feel a part of things.<span style="mso-spacerun: yes;"> </span>I understand just how heavily perceived rejection
weighs on him.<span style="mso-spacerun: yes;"> </span>Because I feel the exact
same way.<span style="mso-spacerun: yes;"> </span>I faced a huge rejection
several years ago and it was quite literally one of the hardest things I have
ever dealt with in my life.<span style="mso-spacerun: yes;"> </span>It has taken
me years to be able to just sit with it, accept it, and not allow it to
overtake my thoughts on a daily basis.<span style="mso-spacerun: yes;"> And I am a grownup! </span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">At Jack’s old school, he had friends.<span style="mso-spacerun: yes;"> </span>The kids and staff knew him; they understood
his challenges and knew that he was fundamentally a good kid.<span style="mso-spacerun: yes;"> </span>Were bad behaviors really ignored?<span style="mso-spacerun: yes;"> </span>I don’t think so, I think the emotions behind
them were just known, accepted, and dealt with appropriately.<span style="mso-spacerun: yes;"> </span>His peers loved him for the most part.<span style="mso-spacerun: yes;"> </span>This is why I thought it was so important for
him to stay among typical peers in his new placement.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">I left a huge piece of the puzzle out of the mix and didn’t
even realize it.<span style="mso-spacerun: yes;"> </span>The new staff and the
new kids are never going to accept Jack the way he was accepted at his old
school.<span style="mso-spacerun: yes;"> </span>They don’t know him, and they
are honestly not taking the time, or making the effort to “learn him”.<span style="mso-spacerun: yes;"> </span>Entering a new peer group as a child like
Jack at an older age is an entirely different experience.<span style="mso-spacerun: yes;"> </span>8 and 9 year olds are much more aware of
social differences and behaviors they might consider “odd” than kids were in
kindergarten.<span style="mso-spacerun: yes;"> </span>They react very
differently to Jack than the kids at his old school did.<span style="mso-spacerun: yes;"> </span>And here’s the thing- he notices.<span style="mso-spacerun: yes;"> </span>He feels it to his core.<span style="mso-spacerun: yes;"> </span>He feels rejected, and he feels
targeted.<span style="mso-spacerun: yes;"> </span>So what happens?<span style="mso-spacerun: yes;"> </span>Fight or flight.<span style="mso-spacerun: yes;"> </span>This is already overactive for him (and his
mama)- and this perceived rejection only ramps him up further, or as his new
math teacher says “jacks him up” (ha). <span style="mso-spacerun: yes;"> </span>He goes on the defensive, which becomes
offensive to others.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>So his behaviors escalate- they remove him
from class- he feels rejected- he acts out, and on and on.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<o:p><span style="font-family: Calibri;"> </span></o:p><span style="font-family: Calibri;">I received a call from his principal earlier this week
telling me that they would like to begin to pull him out of class for science
and social studies, which were the only academic areas in which he was
mainstreamed.<span style="mso-spacerun: yes;"> </span>I get why they are doing
this- with his current behavioral patterns, he is disruptive in class, he is
getting nothing out of it, and he is taking away from other kids’ learning
experiences.<span style="mso-spacerun: yes;"> </span>In the long run
however?<span style="mso-spacerun: yes;"> </span>This is doing even more damage in
an already difficult situation.<span style="mso-spacerun: yes;"> </span>More
rejection from his point of view.<o:p></o:p></span></div>
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<o:p><span style="font-family: Calibri;"> </span></o:p></div>
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<span style="font-family: Calibri;">It is difficult to talk with Jack about school.<span style="mso-spacerun: yes;"> </span>Lately he comes in the door literally saying “I
don’t want to talk about my day”, which means of course, his behavioral sheet
is going to be not so good.<span style="mso-spacerun: yes;"> </span>I have been
able to peel the layers away a bit just in doing things like taking walks with
him, or sitting with him at bedtime.<span style="mso-spacerun: yes;"> </span>His
offhanded comments have led the way and I am starting to see things from his
perspective.<span style="mso-spacerun: yes;"> </span>Small things like “no one
laughs at my jokes anymore” (like they did at his old school), and “I just feel
left out”, and “it just makes me so angry”.<span style="mso-spacerun: yes;">
</span>I don’t think it’s the academics that are causing his struggles
anymore.<span style="mso-spacerun: yes;"> </span>Most of what he is feeling is
social and it is the biggest burden of kids with “high functioning” autism.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">He can detect social rejection, and has no idea how to
handle, or remedy it.<span style="mso-spacerun: yes;"> </span>He wants peer
relationships, craves them.<span style="mso-spacerun: yes;"> </span>With Nate,
he honestly could care less at this point, and so going in and out of “typical”
classes and back to his autism classroom works rather well.<span style="mso-spacerun: yes;"> </span>It is the least restrictive environment as it
is intended.<span style="mso-spacerun: yes;"> </span>I am starting to think that
the least restrictive environment situation we provided Jack with is actually restricting
him more than a technically more restrictive environment would.<span style="mso-spacerun: yes;"> </span>In saying this, I mean that I think he might
function better in a setting that is special education oriented, where he would
be “among his peers” all the time, but his peer group would be different.<span style="mso-spacerun: yes;"> </span>In a place where he would feel a part of
things and accepted all the time, instead of constantly feeling singled out,
pulled out, and in his mind rejected.<span style="mso-spacerun: yes;">
</span>Maybe going to a private special needs placement (with on par academics)
makes more sense for him and his sense of well-being.<span style="mso-spacerun: yes;"> </span>Maybe I was focusing way too much on keeping
academics at the forefront, when in fact, that is not the biggest area of
struggle.<span style="mso-spacerun: yes;"> </span>We received his report card
and IEP update yesterday- his grades have gone up a full letter grade in the
small group setting even with all of the struggles he has been having.<span style="mso-spacerun: yes;"> </span>He is making “sufficient progress towards
goal” in all academic areas of his IEP.<span style="mso-spacerun: yes;">
</span>The only areas in which he is not making adequate progress are
his social-emotional goals.<span style="mso-spacerun: yes;"> </span>I think that is
very telling.<span style="mso-spacerun: yes;"> We have another IEP meeting on May 17th and clearly we have some things to address.</span></span></div>
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Jennyhttp://www.blogger.com/profile/06479192285933054835noreply@blogger.com7tag:blogger.com,1999:blog-5362113364349699326.post-34301455237900274922016-03-19T10:29:00.001-04:002016-03-19T10:33:38.351-04:00Great Expectations<div class="separator" style="clear: both;"><br></div>When you have your first baby you plan and plan and plan- or so you think. You will do everything "right" and your child's life will be ideal. Cue reality.<div><br></div><div>Our reality has been a huge wake up call. In the beginning it was really hard for me to adjust my expectations. Jack started out so "advanced" with so many things that when I started to realize he was behind in other areas it was really difficult to stomach. Add into that my rule follower, high achiever roots- yeah it was a challenge for this mama.</div><div><br></div><div>Things that have happened over the past month or so- things that have made my heart SO HAPPY, have made me realize just how far I have come. </div><div><br></div><div>Jack started out on a rough path at his new school. Weeks of behavioral spikes, refusing to do work, not getting along with peers. It was terrifying- the constant calls from school- it got to the point where every time they called I thought they were going to ask me to come pick him up (they never did). Even the bus driver was having issues with him.</div><div><br></div><div>What a turn around we have seen. I guess my appreciation for this can go back to my last post about Nate- it took going through this darker period for me to appreciate the positives that are coming our way now. </div><div><br></div><div>He is bringing home countless COMPLETE and CORRECT assignments. Up on the fridge those bad boys go- he has never had this experience of consistent success in school before. If it makes me feel this good I can only imagine what it is doing for his confidence level. <div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-nO1GRRp8gVI/Vu1iOLfFWzI/AAAAAAAARC8/3keFNBsjkOU/s640/blogger-image--1387097583.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-nO1GRRp8gVI/Vu1iOLfFWzI/AAAAAAAARC8/3keFNBsjkOU/s640/blogger-image--1387097583.jpg"></a></div></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-ik1rIALEQs4/Vu1iP_1O8xI/AAAAAAAARDE/DJ5zRAa-EhE/s640/blogger-image--1557293274.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-ik1rIALEQs4/Vu1iP_1O8xI/AAAAAAAARDE/DJ5zRAa-EhE/s640/blogger-image--1557293274.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Doing homework with him has become a completely different experience. He may complain about it intermittently but compared to the past- when I would be constantly asking him just to look at the paper, it is a cake walk. And he writes it!! Can't even begin to explain what that is like- he used to limply hold his pencil in his hand and tell me he was not capable of doing it. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Then this week he had his third grade musical, "science rocks". I thought they would stand up there and sing a couple of songs- 45 minutes into it I realized this was much more involved than that. This type of event has always been a land mine for my firstborn. The noise, the crowds, the expectation to stand still and follow directions. The APPLAUSE. Just the clapping alone used to send him into a tailspin and inevitable meltdown. His dad and I were basically gripping our chairs at the beginning and praying (that he would do ok and that it would end- soon). My son. My sweet boy. Made it the entire way through, and made an effort to sing every single song with a smile on his face. Did he get the (very involved I might add) hand motions correct? Not on your life! Did he have periods where he couldn't stop giggling and the proper little girl standing next to him (she reminded me of myself when I was their age) was constantly jabbing him and telling him to simmer down? 100%. For the first time in my life as a mom- I didn't worry- I actually wanted to tell the little girl to chill out- kind of symbolic I'm thinking 😜. He even made it through the science fair awards and the once again constant applause.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I imagine most of the parents who attended this adorable show went and thought it was cute and enjoyed it. I ended the successful evening in tears because I couldn't believe what my baby had achieved. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-x_csrCO6f_A/Vu1iNSwCEJI/AAAAAAAARC4/27cmYZYJsDw/s640/blogger-image--2026515972.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-x_csrCO6f_A/Vu1iNSwCEJI/AAAAAAAARC4/27cmYZYJsDw/s640/blogger-image--2026515972.jpg"></a></div><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-wFO645pu018/Vu1iPM0o0yI/AAAAAAAARDA/FhLMW5oXqtw/s640/blogger-image--1927580586.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-wFO645pu018/Vu1iPM0o0yI/AAAAAAAARDA/FhLMW5oXqtw/s640/blogger-image--1927580586.jpg"></a></div><br></div><br></div>Jennyhttp://www.blogger.com/profile/06479192285933054835noreply@blogger.com10tag:blogger.com,1999:blog-5362113364349699326.post-48416572519962296812016-03-13T19:20:00.001-04:002016-03-13T19:21:15.255-04:00When Your Child Is Special<div dir="ltr" style="text-align: left;" trbidi="on">
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While I am a special needs mom, that's not what I mean today.<br />
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I am talking about how special my Nate is- what an amazing little individual I have in my life. I was sitting with him today out at lunch after a particularly successful haircut and I just had to stop myself for a minute and stare. He is so gorgeous. Sometimes it feels like every single thing he does has just a little magic involved </div>
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He is just a perfect little soul. <br />
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There is an element of this feeling of awe that DOES involve autism. I am not one of those parents who counts autism as a blessing. But it did give me a gift. It gave me the gift of seeing my son "return" to me. With the absolute devastation that came when he stopped talking to us, stopped looking at us, started banging his head against the walls, came the complete joy of seeing him respond to his name, attempt to say words, jump on his exercise ball rather than engaging in self harm..<br />
<br />
Sometimes it really does take losing something to understand just how precious it is. Jack was an "early talker". I can still remember a mom in our play group looking at me completely deadpan and saying, "did your 15 month old just say vacuum??? excuse me while I go shoot myself in the head!" (she's probably cracking up right now). I was a first time mom, I completely took Jack's speech for granted- I had no idea just how amazing it was. Honestly, I would've been happy if he would've simmered down for a minute- pretty much all the time. <br />
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And Nate started out slower, but developmentally appropriate. He was still on track when he received his vaccines in June at about 16 months. I am not trying to blame vaccines, but it was at that visit that he received a standard developmental screening- he was pointing, he had enough words, he was playing with toys. And then he wasn't. I guess you can take that however you want. <br />
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When your child, who is supposed to be exploding with new developments, loses the skills he has and checks out- there just isn't even a word that encompasses those feelings. Terror- maybe. But grief is in that mix, so I guess not. Let's just say it's life altering. <br />
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Anyway, I don't want to relive all of that, but it's kind of crucial to the story. In regaining skills, starting to explore his world, interacting with those around him, Nate has become my own little personal daily miracle. Every single thing he does amazes me- and I can read him like very few moms can read their kids. Because we had to do it without words for YEARS. It was actually a huge challenge when he started ABA, me withholding things and waiting for the word, because I could literally always see in his eyes what he wanted and needed. We had developed our own system, and I would have to say I was the only one who could read him like this.<br />
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I am starting to be able to share that with others, because he can now go into school and communicate his needs- generally only the very basic ones, but it's such a step up...apparently last week at school, he went to the bathroom while in gym and walked down the hall announcing to everyone "I pee, I pee." Seeing this little personality that I have always known was there emerge and be noticeable to those around him is just thrilling. </div>
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He has spunk, he has a little attitude, and I'm convinced that his sense of humor is just as sarcastic as his mama's. The amount of eye rolling that goes on in this house is just hilarious. His curiousity is starting to really emerge- he will literally move my mouth just to see me talk and watch how I form my words- this is so cool to see...<br />
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He is starting to "joke". He finds himself (and his ability to make others do things) hilarious. He is beyond loved everywhere he goes- he has his therapists, teachers, and family wrapped around his little finger. <br />
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In short, this little boy is my hero. I am so proud of how far he has come, and I am so hopeful about where he is headed. I could not have said any of that two years ago. I was too absorbed in my own grief to realize how many wonderful moments were headed my way. I am learning, through this child to appreciate the little moments in a way I never understood before. I have learned that every single step for him is huge, and that he can go way further than I had realized...<br />
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I LOVE this boy!!!! He brightens every single day of my life. </div>
Jennyhttp://www.blogger.com/profile/06479192285933054835noreply@blogger.com1tag:blogger.com,1999:blog-5362113364349699326.post-78576166037883732502016-03-07T10:58:00.002-05:002016-03-07T11:41:33.784-05:00A Cause Near and Dear to My Heart- Please Read!!<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="text-align: left;">If you are reading this, you either know and care about our family, or are affected by autism in your own daily life. Either way, you have some personal knowledge about the affects that autism can have on a family. I talk quite often about the day to day emotional struggles that we face- but the fact of the matter is that financial issues have just as much of an impact. This is true for pretty much all autism families. There are few other serious diagnoses out there that have treatments and therapies so significantly limited by a family's personal finances. If our children had other medical diagnoses, or genetic disorders, they would qualify for services, and likely medicaid rather quickly. With autism, Maryland has the "autism waiver", which offers a limited number of slots for special services provided to kids with autism- we have been on the wait list for approximately 6 years now. When we first started on this journey, we felt so limited in what we could provide for these kiddos- our insurance covered 50 therapy visits A YEAR. OT, PT and speech COMBINED. We could take them to (in-network) developmental specialists and get them diagnosed 500 times a year (if we were nuts), but the treatments these specialists recommended were completely out of reach for us, and we are a two income family, albeit one with two children in need of services. </span></div>
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I could spend this entry perseverating about the things we have not been able to do because of lack of funding- there is much that I could say, and have said on this issue. But that's not where I am going with this. </div>
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There are sources of help, sources of funding out there for our children. About two years ago, such a source came into our lives and changed things for the better. We became aware of Avergan Foundation <a href="http://averganfoundation.org/">http://averganfoundation.org/</a> through the special needs preschool that Nathan was attending. We were drowning in debt trying to pay for this program that our son needed. There was of course little to no funding available for this type of program, and the cost of it would quite frankly make your head spin. When it comes to your children? Your son who is 3 and non verbal? That hardly matters. You want your child to function, to thrive, and will do just about anything to make that happen.</div>
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To put this in perspective, here is Nate, at age 5- for weeks this program worked with him on a "wish" his mama had for his 5th birthday. I wanted him to blow out a candle. This may sound frivolous to some, but these milestones that we as parents miss out on- they mean so much. </div>
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And here is a mama's wish coming true....</div>
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It is true what they say, fighting so hard for these small accomplishments makes them mean even more. Avergan helped fund Nathan's attendance at this program for nearly a year, while also funding his private speech sessions with a speech therapist who truly understands his needs...<br />
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After all they did to help support our family, I found myself volunteering at all of their events, wanting to be involved, wanting to give back. So recently, in a moment of insanity, I joined the board. As tied up as I am trying to provide the boys with what they need- at this point, I am proud to say that I think they kind of have it...we are in a good place service-wise. There are many other families who are not. And they need help. They are where I was 5 years ago- and it's not a place anyone should have to stay in!<br />
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So here I am, a mama with (another) cause. <br />
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Avergan Foundation is having an event called "Art For Autism" on April 23rd to raise money for these families, and we need your help. If you are an autism mom (or dad), we need your kiddo's art! If you are a business owner, we need your sponsorship! And if you are my friend, or family, or care for these children we are working for, we need you to come out to the event. I will be posting more information as the date gets closer, but here is the link to the event<br />
<a href="https://www.blogger.com/goog_1639686192"><br /></a>
<a href="http://averganfoundation.org/our-events/art-for-autism/">http://averganfoundation.org/our-events/art-for-autism/</a><br />
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Please consider getting involved in whatever way you can- if I can find time, you can too!!!<br />
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And just look at these faces.....<br />
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Not trying to sway you, but you know, they are kinda cute ;-)<br />
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Jennyhttp://www.blogger.com/profile/06479192285933054835noreply@blogger.com1tag:blogger.com,1999:blog-5362113364349699326.post-88192642151048544412016-02-15T09:51:00.000-05:002016-02-15T12:34:18.144-05:00Caregiver Burnout is Very Real<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: "calibri";">About a year ago, my employer, being the forward thinking
organization that it is, hosted a teleconference for employees on compassion
fatigue and caregiver burnout.<span style="mso-spacerun: yes;"> </span>I of
course could check almost every symptom box on the list of possibilities.<span style="mso-spacerun: yes;"> </span>That being said, I have a very difficult time
accepting that I feel this way, and that it’s not necessarily a personality
defect.<span style="mso-spacerun: yes;"> </span>I have always been a “carer”,
and the thought that I essentially have nothing left in the tank and need to
tell people I’m full up?<span style="mso-spacerun: yes;"> </span>Well, it feels
like failure to me.</span><o:p><span style="font-family: "calibri";"> </span></o:p></div>
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<a href="http://www.webmd.com/women/caregiver-recognizing-burnout"><span style="color: blue; font-family: "calibri";">http://www.webmd.com/women/caregiver-recognizing-burnout</span></a><o:p></o:p></div>
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<span style="font-family: "calibri";">I became a nurse (gulp) 16 years ago.<span style="mso-spacerun: yes;"> </span>It was the most natural thing on earth for
me.<span style="mso-spacerun: yes;"> </span>I studied biochemistry in college
and accepted a research internship with a pharmaceutical company.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>I did
this full time for a semester and by the end was ready to emit a primal
scream.<span style="mso-spacerun: yes;"> </span>The lab- silent.<span style="mso-spacerun: yes;"> </span>The petri dishes- did not answer me!<span style="mso-spacerun: yes;"> </span>This particular lab was particularly stifled,
not even music was allowed because apparently the researchers could not agree
on a genre.<span style="mso-spacerun: yes;"> </span>That was all it took for me
to know that this was not to be my path in life.<span style="mso-spacerun: yes;"> </span>I needed people; I needed to help people
directly, not by isolating something under a cell culture hood!<span style="mso-spacerun: yes;"> </span>When I returned to school I changed my major,
transferred to Hopkins and the rest is history.<span style="mso-spacerun: yes;">
</span>I chose oncology, bone marrow transplant as my area of practice.<span style="mso-spacerun: yes;"> </span>I loved that they utilized primary nursing
and that we functioned in and rotated between the outpatient and inpatient
setting and also could transition patients and keep them when they required ICU
care.<span style="mso-spacerun: yes;"> </span>This resulted in nurses knowing
their patients for months, seeing them daily, and unfortunately sometimes
seeing them come back again and again for years when they relapsed or had
complications.<span style="mso-spacerun: yes;"> </span>It was definitely
emotionally draining.<span style="mso-spacerun: yes;"> </span>It was also
incredibly fulfilling.<span style="mso-spacerun: yes;"> </span>About seven years
in, I needed a change.<span style="mso-spacerun: yes;"> </span>I had had a
string of wonderful patients pass away and to be honest, I was burnt out.<span style="mso-spacerun: yes;"> </span>Also, I think God had a plan for me- I
accepted a position as a transplant case manager with an insurance company- and
made the eventual possibility of working from home a condition of my
employment.<o:p></o:p></span><br>
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<span style="font-family: "calibri";">About 6 weeks after I started my new job?<span style="mso-spacerun: yes;"> </span>Pregnant.<span style="mso-spacerun: yes;">
</span>And then along came Jack.<span style="mso-spacerun: yes;"> </span>I truly
believe that this job is one of the key reasons that I have been able to do all
that I do for the boys.<span style="mso-spacerun: yes;"> </span>God put me here
so that I would be able to be the mommy I need to be.<span style="mso-spacerun: yes;"> </span>I was here through the boys’ infancy; I could
nurse them on demand with the help of an in home daycare provider.<span style="mso-spacerun: yes;"> </span>It was hectic- there were lots of
interruptions, but it was worth it.<span style="mso-spacerun: yes;">
</span>Little did I know what was coming with the boys- that this was by far
the easy part.<o:p></o:p></span></div>
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<span style="font-family: "calibri";">With each of the boys’ diagnoses things became more
complicated.<span style="mso-spacerun: yes;"> </span>As their mom, it was my job
to do everything and anything I could to help them- I have been through more
assessments (and depressing discussions) than I care to mention, I have taken
each of the boys through multiple clinical trials that eventually required me
to take FMLA to preserve my employment, I have taken every Friday off for
months to take my son to mother-son speech program.<span style="mso-spacerun: yes;"> </span>We now have in home therapy every day of the
week Monday-Friday from 4-6pm.<span style="mso-spacerun: yes;"> </span>While I
am still working.<span style="mso-spacerun: yes;"> </span>As I have said, I am
extremely thankful that I have the job that I have, because otherwise, the boys
could not have this.<span style="mso-spacerun: yes;"> </span>And I try to focus
on that.<span style="mso-spacerun: yes;"> </span></span></div>
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<o:p><span style="font-family: "calibri";"> </span></o:p><span style="font-family: "calibri";">Parenting two kids with autism is incredibly fulfilling- and
unimaginably exhausting.<span style="mso-spacerun: yes;"> </span>I think that
one of the hardest parts, a part that many on the outside looking in may not
even realize, is that there is no true treatment roadmap for our kids.<span style="mso-spacerun: yes;"> </span>And there is no one central to turn to, to
tell you what you need to do for your child.<span style="mso-spacerun: yes;">
</span>Instead there are about 20 cooks in the kitchen, all with different
suggestions, different ideas, and you, as the parent, are left to sort it all
out.<span style="mso-spacerun: yes;"> </span>Are you going to treat your child
medically, assume that there is some type of underlying physical issue
contributing?<span style="mso-spacerun: yes;"> </span>Are you going to focus on
behavior?<span style="mso-spacerun: yes;"> </span>Are you going to focus on
sensory issues?<span style="mso-spacerun: yes;"> </span>IEP’s?<span style="mso-spacerun: yes;"> </span>Couseling?<span style="mso-spacerun: yes;">
</span>Equine therapy?<span style="mso-spacerun: yes;"> </span>Music
therapy?<span style="mso-spacerun: yes;"> </span>Vision therapy?<span style="mso-spacerun: yes;"> </span>Well, the jist is that no one can tell you
what is going to actually help.<span style="mso-spacerun: yes;"> </span>All
modalities have “evidence” that their methods work.<span style="mso-spacerun: yes;"> </span>How do you choose?<span style="mso-spacerun: yes;"> </span>Can you do it all?<span style="mso-spacerun: yes;"> </span>Well I’m here to tell you that I have
tried.<span style="mso-spacerun: yes;"> </span>I have tried to continue working
full time and providing all of these things for the boys. <span style="mso-spacerun: yes;"> </span>Is it possible?<span style="mso-spacerun: yes;"> </span>Well, what are you willing to sacrifice?<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>Your Sanity?<span style="mso-spacerun: yes;"> </span>Well-being?<span style="mso-spacerun: yes;">
</span>Your family life?<span style="mso-spacerun: yes;"> </span>Your marriage?<span style="mso-spacerun: yes;"> </span>These choices are no fun, they are actually
quite terrifying.<span style="mso-spacerun: yes;"> </span>And there is no way to
know if you are making the right ones<o:p></o:p></span></div>
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<span style="font-family: "calibri";">My job no longer involves face to face, physical caring of
patients.<span style="mso-spacerun: yes;"> </span>That does not mean that I am
not still caring for patients.<span style="mso-spacerun: yes;"> </span>I spend
hours on the phone with my patients now, and am a bit of a jack of all
trades.<span style="mso-spacerun: yes;"> </span>I review their clinical
information and determine if they are eligible for a transplant, yes.<span style="mso-spacerun: yes;"> </span>That is one of my main jobs.<span style="mso-spacerun: yes;"> </span>But after this initial step, I call these
patients, establish professional relationships with them and help them with
everything from finding transportation to appointments, getting their
medications, explaining the transplant process, helping them find a transplant
center that will accept them, monitoring their rehab attendance if there are substance
abuse issues, to figuratively holding their hands when they are feeling low,
helping them find a caregiver when family members fail to support them, and
listening to them express their doubts about moving forward with transplant,
their thoughts about dying.<span style="mso-spacerun: yes;"> </span>All while
being recorded, ha.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>And being called by my son’s school daily as
he adjusts to his new placement, being asked to get on the phone and “motivate
him” to work.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "calibri";">I am lucky to have a partner in this- my husband.<span style="mso-spacerun: yes;"> </span>The reality of the situation is that he now
works an hour from home, so I am on my own with all of the daytime issues.<span style="mso-spacerun: yes;"> </span>The fact that I also have a full time job is
irrelevant, as he is too far away to assist.<span style="mso-spacerun: yes;">
</span>And I have NEVER discussed this before- but my husband is also
chronically ill.<span style="mso-spacerun: yes;"> </span>I won’t go into
details, but I will say that his illness leaves him incapable of helping a fair
amount of the time.<span style="mso-spacerun: yes;"> He is busy trying to keep his own health in check, as he should be. </span></span></div>
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<span style="font-family: "calibri";">I find myself yelling at my husband for being sick.<span style="mso-spacerun: yes;"> </span>I find myself not responding to my friend’s
calls and messages, actively avoiding them even.<span style="mso-spacerun: yes;"> </span>I find myself looking forward to work,
because it is my break.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>I find myself running until I am completely
numb, both mentally and physically.<span style="mso-spacerun: yes;"> </span>I
find myself locking my bedroom door for 20 minutes so that Jack can’t come in
and talk about planes- not that it helps, as he is content to continue his
monologue through the door.<span style="mso-spacerun: yes;"> </span>I find
myself breaking down every time Jack has a meltdown and becomes physically aggressive-
and I need to focus on him, I need to remain calm, I need to follow the plan
the behavioral therapist has in place.<span style="mso-spacerun: yes;">
</span>But with all of the above that is going on, all I can think is, now he
is hurting me.<span style="mso-spacerun: yes;"> </span>How can this be?<span style="mso-spacerun: yes;"> </span>What have I done wrong?<span style="mso-spacerun: yes;"> </span>What is wrong with ME?<span style="mso-spacerun: yes;"> </span>This one change to the status quo has all but
cracked me- it is the proverbial straw that broke the camel’s back.<span style="mso-spacerun: yes;"> </span>I can handle a lot.<span style="mso-spacerun: yes;"> </span>I DO handle a lot.<span style="mso-spacerun: yes;"> </span>But lately, it feels like it’s just too
much.<span style="mso-spacerun: yes;"> I end the day so exhausted, so overwrought, and so empty. I often wonder how I will make it through- each day feels like it's own individual battle. I wake up in the morning and brace myself for all of the unknowns that are about to be lobbed my way. </span></span><br>
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<span style="font-family: "calibri";">So what happens in the face of other stressors when one is
already feeling like this?<span style="mso-spacerun: yes;"> </span>I am told my
work hours are going to be changed, that it is mandatory- ok, whatever.<span style="mso-spacerun: yes;"> </span>We have a financial problem- mkay.<span style="mso-spacerun: yes;"> </span>House crumbling around us?<span style="mso-spacerun: yes;"> </span>No biggie.<span style="mso-spacerun: yes;">
</span>Get yelled at at work?<span style="mso-spacerun: yes;"> </span>Oh well.<span style="mso-spacerun: yes;"> </span>I have no ability left to mount a response to
these things that seem so mundane these days.<span style="mso-spacerun: yes;">
</span>And maybe under the circumstances that’s a good thing- it’s definitely a
protective thing.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>I am numb to so many things- my patients at
work don’t really affect me the way they used to- I care, but I don’t.<span style="mso-spacerun: yes;"> </span>I do my job, it is my JOB.<span style="mso-spacerun: yes;"> </span>But the passion?<span style="mso-spacerun: yes;"> </span>It’s gone.<span style="mso-spacerun: yes;">
</span>The compassion?<span style="mso-spacerun: yes;"> </span>Well, I can fake
that.<span style="mso-spacerun: yes;"> </span>I am hanging on by a thread,
trying to remind myself that if I made it through Nathan constantly banging his
head on the floor and standing on his head, I can make it through this.<span style="mso-spacerun: yes;"> </span>But fatigue?<span style="mso-spacerun: yes;">
</span>Burnout?<span style="mso-spacerun: yes;"> </span>Doesn’t even begin to
describe it.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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Jennyhttp://www.blogger.com/profile/06479192285933054835noreply@blogger.com1tag:blogger.com,1999:blog-5362113364349699326.post-62793409613283869982016-01-26T22:53:00.001-05:002016-01-26T22:53:07.003-05:00Nate- development can lead to new challengesI haven't talked about Nate in awhile. He has been doing very well. He has been in ABA consistently for about 10 months and in complete contrast to our experience with Jack, he has had the same tech the entire time, who is amazing.<div><br></div><div>And good things are happening- he can repeat an approximation of any word you request. He can repeat actions, he can do many things with verbal prompts. There is so much progress that it's hard to get into- which is an amazing thing. </div><div><br></div><div>His level of awareness is much higher than it was- this brings some new challenges for our family- for the first time, we are seeing sensory sensitivities in our usually "seeking" child- he covers his ears now with loud noises, he doesn't like the snow any more. His tech and I have committed the cardinal sin of cheering too lousy when he does something well!! This is something he never used to notice- it's a positive- but I imagine it makes his life harder. He also wants MORE input in other ways- especially visually- he will try to grab his iPad and his brothers and put on two movies simultaneously. Or (and this one in my opinion just shows he is a genius) he will stand on a chair and watch his iPad in the mirror. Not even a little kidding. </div><div><br></div><div>His verbal communication and note I say communication and not speech, because they are very different entities, has been the slowest to develop. And unfortunately that lag along with increased awareness is causing him more frustration than he has expressed in the past. He is not content to accept the status quo, i.e. the same food he has always liked- he wants to keep trying until we get it right-but often loses it before we get there. But he is trying to do it verbally, and it's just so difficult for him- he can ask for something to eat, and then when I say what do you want? He says "iPad". And he may even be holding it. It's just his "default" response. It's so frustrating for both of us. And yet it's encouraging at the same time, if that makes sense </div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-JNgJrLsonIc/Vqg_HhzbbvI/AAAAAAAAQ2Q/qreBwGJcEoM/s640/blogger-image--595795053.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-JNgJrLsonIc/Vqg_HhzbbvI/AAAAAAAAQ2Q/qreBwGJcEoM/s640/blogger-image--595795053.jpg"></a></div><br></div><div>I am finding myself speaking to him on a different level- I often wonder if he thinks I am talking down to him. I can tell by his actions and reactions that he has so much to say. And yes, we have tried a device in the past, but it was clear he was not ready. And he has always been in that gray area of having some speech and really TRYING to speak. Of course we don't want to discourage that! But at the same time I want him to be able to get out what he needs. He is doing amazing with his adapted spelling in school, has mastered matching most of his letters both lower and upper case in ABA. When I read to him I point to the words, I have the closed captioning on when he watches a show because I have the sense that letters make sense to him- I could see him learning to read just by exposure. And I am open to a device for him- because of his continued speech efforts, I am not willing to call him nonverbal, and I will never give up on verbal communication- but I want him to be able to express himself- and if a device is the bridge that he needs, so be it. </div><div><br></div><div>His building frustration reminds me that we are dealing with a very whole, very intelligent little boy who probably wants to throw his hands up and tell us all where to go many times each day. I can't even begin to imagine how annoying we must be when we just don't get it. <div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-bMnIJvcS4zk/Vqg_IaZWiaI/AAAAAAAAQ2Y/AK1AVGYT69I/s640/blogger-image--1016427245.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-bMnIJvcS4zk/Vqg_IaZWiaI/AAAAAAAAQ2Y/AK1AVGYT69I/s640/blogger-image--1016427245.jpg"></a></div></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">We are getting there- man is this a curvy, bumpy ride but this child teaches me something new every single day. And my critical thinking skills and nonverbal communication? Through the roof!</div>Jennyhttp://www.blogger.com/profile/06479192285933054835noreply@blogger.com5tag:blogger.com,1999:blog-5362113364349699326.post-60426810700259741772016-01-15T10:15:00.001-05:002016-01-15T10:15:37.091-05:00A Difficult Update<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Calibri;">This is a very hard update to write.<span style="mso-spacerun: yes;"> </span>And it’s written by a mama at her wits end.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">I knew when Jack had to change schools that it was going to
cause enormous stress for him-<span style="mso-spacerun: yes;"> </span>that he
would have difficulty coping, that he would have a burst of behavioral issues similar
to what we saw at home over the summer and this fall.<span style="mso-spacerun: yes;"> </span>I guess I didn’t realize how bad it would
get.<span style="mso-spacerun: yes;"> </span>It does not help that one of his
ABA practitioners left literally 3 days before we had to tell him that he was
changing schools, that the replacement person fell through and he has been
without anyone 3 out of 5 days for almost a month.<span style="mso-spacerun: yes;"> </span>That doesn’t help at all.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">It doesn’t help that the people surrounding Jack in all
areas of his day are strangers, people that don’t know his anxiety, people who
don’t understand him or know his history.<span style="mso-spacerun: yes;">
</span>People who don’t know how to work with him.<span style="mso-spacerun: yes;"> </span>I want to scream.<span style="mso-spacerun: yes;"> </span>I want to throw something and have a
behavioral outburst.<span style="mso-spacerun: yes;"> </span>I want a turn.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">I don’t get one.<span style="mso-spacerun: yes;">
</span>Instead, I am expected to remain calm when I want to tell people to get
their heads screwed on straight and help my son.<span style="mso-spacerun: yes;"> </span>To smile and act normal as I explain to them
that this is week TWO and by definition the period when he is going to have the
hardest time, as he comes to realize that this is indeed permanent- that he
will not be at school with his friends anymore, that he won’t see the aides and
teacher who knew, and nurtured him for the past 4 yrs. anymore.<span style="mso-spacerun: yes;"> </span>I am expected to deal with a bus driver who
wants to sit him at the back of the bus by himself because of two verbal
outbursts, when what she doesn’t realize is that this is only going to make it
worse.<span style="mso-spacerun: yes;"> </span>I am expected to be dandy with
the school calling me and asking me to get him on board with doing his work
this morning- to talk to him in the middle of a meltdown and “fix it”.<span style="mso-spacerun: yes;"> </span>To deal with them telling me they are going
to give him “a good month”, before we have to meet.<span style="mso-spacerun: yes;"> </span>This in my view means, they want him out.<span style="mso-spacerun: yes;"> </span>Already.<span style="mso-spacerun: yes;">
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<span style="font-family: Calibri;">I am expected to smile through him coming home from school
crying many days, telling me that the principal told him to “cry all he wants”,
and him sobbing that he never wants to go back to school again.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">And I can’t handle it.<span style="mso-spacerun: yes;">
</span>I can’t.<span style="mso-spacerun: yes;"> </span>Because this fall was
already traumatic for all of us.<span style="mso-spacerun: yes;"> </span>And the
people surrounding him now don’t seem to be giving him a chance.<span style="mso-spacerun: yes;"> </span>And I can’t make them do it.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">I wish I could put him in a private school.<span style="mso-spacerun: yes;"> </span>I wish I could find people to work with him
who love him.<span style="mso-spacerun: yes;"> </span>I wish I could make his
ABA be consistent, I wish that asking for someone to come 2 hrs. a day 5 days a
week and do an effective job wasn’t asking for the moon.<span style="mso-spacerun: yes;"> </span>But apparently it is.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">I am scared to keep him home, I am afraid to put him on the
bus.<span style="mso-spacerun: yes;"> </span>I am afraid to make a work call for
fear the school will call.<span style="mso-spacerun: yes;"> </span>I am afraid
they won’t call when something really serious is going on.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri;">There are days lately that I just don’t feel like I can do
this anymore.<span style="mso-spacerun: yes;"> </span>I don’t know who in this
universe thought I was strong enough to do this for two kids, but I feel like
they were wrong.<span style="mso-spacerun: yes;"> </span>I am tired and I am scared.<span style="mso-spacerun: yes;"> I don't know how to advocate for him at this point, and I don't know what to advocate for. </span></span></div>
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Jennyhttp://www.blogger.com/profile/06479192285933054835noreply@blogger.com7tag:blogger.com,1999:blog-5362113364349699326.post-86940799297948207992016-01-01T20:17:00.001-05:002016-01-12T10:24:05.798-05:00My Weight Loss Journey<div dir="ltr" style="text-align: left;" trbidi="on">
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This is a mama post- very little to do with the kiddos- you've been warned!!</div>
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I posted before and after weight loss pictures the other day on Facebook and got about a bazillion "how??" Questions. So now I am sharing all that I have done.<br />
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The realistic answer is the one we all hate to hear- diet and exercise.</div>
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That being said, over the past 2 years I have tried so many diets it is ridiculous, dr oz cleanses, weight watchers, shakeology, other shake programs, the hcg diet, essential oils, voodoo (kidding). I could never sustain any of it. I drank a cleanse shake twice a day about a year ago for 2 months that was recommended by a homeopath, it literally tasted like chalk- by the end of this I was actually gaining weight. </div>
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I shredded, I 21 day fixed, I did insanity max- it all hurt like hell and I didn't see the results I wanted and needed.</div>
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We all need a catalyst to change- something that drives us. I will admit that for me, while I would like to say it was an internal drive to better myself, the initial trigger was caused by an external factor, which was my sisters wedding. I had been looking forward to the day she got married basically since the day she was born (she is 12 years younger than me), but when it was finally happening I was terrified at the thought of wearing a bridesmaids dress with a bunch of women at least 10 years younger than me- and I was the heaviest I had ever been. I didn't want to embarrass myself, or even worse, her. Cue all the diet craziness. The hardcore attempts started last January- and did not go very well at all. About a month after me, a neighbor started a medical weight loss program. I watched her weight seem to literally fall off (obviously not the case but compared to me it sure seemed like it!!). About 3 months later-</div>
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A good 30-40 lbs less for her and probably 5 lbs MORE for me, I finally decided I was going to find a way to stomach the cost of the program she was using and get myself in there! I was in a time crunch. It took over a month to get an appt, by the time I got started it was June 23rd- two months from the wedding. I had little hope I would see a difference by then but I was not giving up without a fight. We went to the beach for a week during my first week on the diet- I literally sat in an ice cream shop across from my whole family eating Sundaes while I drank a lemon diet shake- one of the hardest weeks of my life- I lost 4 pounds.</div>
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Here is the website for the program, run by a local Pcp. It is not one of the big popular diets, but the products used are prescription and available through other practices:</div>
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<a href="http://livelyte.com/">http://livelyte.com/</a></div>
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The program involves shakes, bars, puddings and soups. It is very restrictive and high protein. There are weekly classes and the program is supervised by a doctor and a nutritionist, who when you get close to your goal weight help you adapt back to regular foods, which I have been doing for the past 2 months. You continue to lose weight as you adapt, if you follow the instructions and now I am at "maintenance".</div>
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After about a week on the program I started adding in exercise- first Jillian Michaels shred- it took me 60 days instead of her prescribed 30 to get to level 3- which is killer- but I have abs and nice arms for the first time in my adult life and I highly recommend it!! About two weeks into that I started couch to 5k, which is a nice slow progression to running a 5k. I ran the full distance the Thursday before my sisters wedding. I will disclose that I ran cross country in high school and ran some as an adult, so it wasn't all new to me, but I promise you this- it was "like new" with how out of shape I was when I started!!!</div>
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By the wedding I was down 20 lbs, not nearly where I had wanted to be, but a huge relief after where I had started. The dress I had tried on and cried over in June was taken in by about two sizes, so that was good</div>
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After the wedding, one of the medical technicians at the program said, "so are you finished now?" And that's when it hit me that no, I was not, if I was going to work this hard, I may as well finish what I started!</div>
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I have lost the other 20 lbs I always wanted gone. I ran a 10 k, then a half marathon. I kept doing Jillian Michaels shred on my off days from running- it's 20 minutes people- we can do ANYTHING For 20 minutes!! I can plank row with the best of them these days! And I try to log at least 20 miles running each week. It's not easy with the kids schedules, therapies, countless IEP meetings etc, but it is WORTH IT. And not just for me- they have a completely different, energized mama who takes them on outings after her 10 mile runs on the weekends. Not to mention a happy mama! Jack observes my Jillian Michaels and tries to do it with me- he stands behind me and tells me I am making a "good choice". He has been my biggest cheerleader. </div>
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So there is no big mystery here, lots of hard work, an investment of time and money, and a good team of professionals. But if I can do it- anyone can- full time job, two special needs kids...these things just mean time management is everything. And now I have a new sanity saver- running- <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">it is everything to me. And boy did I get my results!!!</span></div>
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Jennyhttp://www.blogger.com/profile/06479192285933054835noreply@blogger.com1tag:blogger.com,1999:blog-5362113364349699326.post-69933546213009425232015-12-27T20:51:00.000-05:002015-12-27T20:51:31.705-05:00A New School For Jack<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: inherit;">I have been sitting on this for over a week now, I knew that
I needed to write this, not only to keep friends, family, and other followers
in the loop, but also to process all that has been going on for my own sake. In a
year of many changes for the boys, these past 2 months have led to quite
possibly the biggest and most traumatic change for our family in a long time. My husband and I have been to multiple IEP
meetings (again) this fall, and through many discussions between us, with
educators, therapists, administrators, and advocates. And we finally came to a decision. <o:p></o:p></span></div>
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<span style="font-family: inherit;">Jack is moving to a new school in January, another
mainstream elementary school, where they can better “accommodate” him. I have had soooo many people ask why this
can’t be done at his home school, where he has been since kindergarten. There is no easy answer. There is no real answer. Jack has had significant special education
services in school since about midway through kindergarten. But to be honest, it has never been
enough. <o:p></o:p></span></div>
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<span style="font-family: inherit;">He was diagnosed with Asperger’s at age 3. At that point he was provided with (minimal)
special education services in his regular preschool. He probably should have gone to the same
early childhood intervention program that Nathan went to; it probably would
have benefitted him greatly. But, for
lack of a better explanation, he could talk his way around it. He sounds (and really is) so smart when he
opens his mouth, he knows so many facts; he has ALWAYS been able to talk (well
since he was 18 mos). When they have
autism, adhd, and anxiety, the ability to speak is such a blessing for a child as it relates to being able to communicate what they need, and such an
obstacle when trying to get this child what he deserves. This is coming from a mom who has one child with
speech and one who struggles tremendously with verbal communication. Speech almost automatically lumps a child
into the category of “high functioning” and sometimes that just isn’t
the case! Do I think Jack is high
functioning? Maybe. I honestly don’t know what I think at this
point, and I don’t know which behaviors are autism, which are adhd, etc. The comingling diagnoses complicate the
situation all the more. <o:p></o:p></span></div>
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<span style="font-family: inherit;">What I DO know is that this little boy has had significant
challenges since birth, with self-regulation particularly- there was never any
self-soothing, or entertaining himself, constant attention has always been
required. And as exhausting as that is
for us as his parents and for his educators as well, I can only imagine how
exhausting it must be for him. <o:p></o:p></span></div>
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<span style="font-family: inherit;">He went through public pre-K, with again, minimal special
education services. He arrived in
kindergarten with an hour of special education services a WEEK. A titch of OT. NO speech.
It makes me shudder even now to think about how much more he deserved
and required back then. We hired an
advocate to come with us to his kindergarten IEP meeting, and he ended up with
an aide full time, including the walk to and from the bus, and lunch, recess
etc. He needed that much guidance, which
to me and his father was a “duh” kind of moment. But it took a lot of fighting to get these
initial services for him.<o:p></o:p></span></div>
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<span style="font-family: inherit;">We have slowly added speech services (for actual
conversation), more pull out services, and assistive technology to his IEP.<o:p></o:p></span></div>
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<span style="font-family: inherit;">Before school work became multi-step and required more
attention, he could compensate for his challenges to a certain extent. We are way past that point and for the past 2
years we have watched him struggle, particularly with math. Here is a hint of how smart he is though-
through all of his attention issues, his obsessions with other things, obstacles
in other areas; he has been able to maintain grade level performance in reading
and spelling. I would estimate that he
is able to maintain probably 10-25% of the amount of attention that the other
kids have. This makes me proud, and it
makes me sad, because I can only begin to imagine what he could do if we could
get his full attention for a little more of his day. That being said, we have tried 6 ADHD
medications- he has had significant issues with all of them. He is in therapy for his anxiety, ABA for his
behavior and focus, and we have tried a multitude of other medications for
anxiety,etc. We can’t seem to get him there.<o:p></o:p></span></div>
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<span style="font-family: inherit;">Add in a school that is “highly ranked” academically and
known in special education circles as not being “friendly” to kids with special
needs, and it’s a recipe for disaster.
Now I need to say one thing- the actual special educators who have
worked with Jack (at least since first grade)?
They are nothing short of amazing people, amazing teachers. People who will go above and beyond to give
your kid what they need, even when they are not allotted the time and resources
to do so. We have not felt the support
of the administration when it comes to keeping our son at his home school. I
know of multiple kids in other local schools with more involved IEP’s who
remain in their home schools despite the fact that there is no dedicated “pull
out” classroom available to them. Children
who are fully out of the classroom for language arts and math, who are not
potty trained and remain in their home schools.
Yet, we are told that because Jack requires pull out for math and
language arts (and require is a strong word in language arts, let’s just say he
makes the majority of his progress in this setting)- his school cannot
accommodate him because they do not have ”full pull out” capability. When I was first told this, I wanted to
fight, I wanted to scream and tell them my son deserved to stay (because he
does). Then I thought about Jack. Really thought about what he needed. His behavior has been worsening at home, he
fights homework even more than he used to, his anxiety across all settings is
much worse. All of these things are
symptoms of a larger problem.<o:p></o:p></span></div>
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<span style="font-family: inherit;">I know he feels the pressure of not being able to keep up,
of not being fully accepted as he is.</span><span style="font-family: inherit;"> </span><span style="font-family: inherit;">I
know that because he is unusually self-aware, he knows he is not “the same” as
the other kids in school.</span><span style="font-family: inherit;"> </span><span style="font-family: inherit;">And it is
bothering him.</span><span style="font-family: inherit;"> </span><span style="font-family: inherit;">A lot.</span><span style="font-family: inherit;"> </span><span style="font-family: inherit;">There were two choices for us as his parents- we could fight, go to mediation, force the school to comply, keep Jack there, and watch
him continue with the same struggles because let’s face it, no matter how hard
these teachers work to give him what he needs, their other responsibilities
will not be lightened-- OR we could change something.</span><span style="font-family: inherit;">
</span><span style="font-family: inherit;">We choose to change something.</span><span style="font-family: inherit;"> </span><span style="font-family: inherit;">We
chose to send him to a school with a formal “pull out” classroom, partly for
this feature.</span><span style="font-family: inherit;"> </span><span style="font-family: inherit;">To be honest, there were
several other deciding factors- the school is much smaller, the faculty has the
reputation of being “special needs friendly”.</span><span style="font-family: inherit;">
</span><span style="font-family: inherit;">And that is the real reason we agreed.</span><span style="font-family: inherit;">
</span><span style="font-family: inherit;">Parenting is HARD.</span><span style="font-family: inherit;"> </span><span style="font-family: inherit;">Other parents
may have come to a different decision- but we have come to understand that “fighting
the good fight” is not always what is best for our son.</span><span style="font-family: inherit;"> </span><span style="font-family: inherit;">While we want him to have what he “deserves”
(aka to be able to stay in his home school), we also have enough perspective to
grasp that maybe he deserves even more than that.</span><span style="font-family: inherit;"> </span><span style="font-family: inherit;"> </span><span style="font-family: inherit;">We have
seen what a school that functions with a greater degree of acceptance can accomplish
just by watching Nate this past year in his autism classroom.</span><span style="font-family: inherit;"> </span><span style="font-family: inherit;">And to be clear it goes both ways- not only
is Nate greeted with more acceptance by the faculty and staff, but the other
kids in the school are taught to accept children with differences </span><span style="font-family: inherit;"> </span><span style="font-family: inherit;">at a much different level than where Jack has
been going to school.</span><span style="font-family: inherit;"> </span><span style="font-family: inherit;">The atmosphere is
completely transformed.</span></div>
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<span style="font-family: inherit;">I have known this was coming for a long time. A loooong time. We have two neighbors who
have children with special needs. When I
told them 4 years ago that I was sending Jack to our “home school”, the
response I received was ominous at best- “good luck”. Ouch.
Both of these other children ended up in different placements- the
parents wanted them out of the home school by the time they went. And now I get it. <o:p></o:p></span></div>
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<span style="font-family: inherit;">Please keep our sweet boy in your thoughts - this is such an
enormous transition for him (and our whole family). And from his perspective it has all happened
so quickly- we didn’t tell him about it until a definite plan was in place, and
unfortunately that was just a week ago, and then his last day at his current
school was last Wednesday (yes, the day before Christmas eve, I know). After Christmas break he goes to his new
school. He will miss his friends, his
teachers, and the aides who spent countless hours with him every single
day. I know he will form new bonds, I
just wish he didn’t have to. </span><o:p></o:p></div>
</div>
Jennyhttp://www.blogger.com/profile/06479192285933054835noreply@blogger.com2tag:blogger.com,1999:blog-5362113364349699326.post-37384664447376283262015-12-06T20:54:00.000-05:002015-12-06T21:35:54.669-05:00Why I'm Not Having A Birthday Party For My Son<div dir="ltr" style="text-align: left;" trbidi="on">
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Nathan is turning 6 this week- SIX!!! He has come so far, and we are so very thankful. And here's the thing, so have we, as his parents.<br>
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Thus, we are not having a birthday party for Nate this year.<br>
<br>
Parents can all acknowledge that the first few years of our kids' lives, the birthday parties aren't really about the kids- they are about the parents, family and friends celebrating the child (and the act of keeping them alive lol). But as kids get older, that all changes- the parties revolve around the child's interests, their preferred activities, their preferred friends. And that's how it should be. Two years ago, Jack's wish was to go to the Museum of Natural History with mom and dad. So that's what we did.<br>
<br>
What have we been doing with Nathan?<br>
<br>
We have been guessing. He "seems" to like Mickey, let's try that this year. What should we do? Who should we invite? It has continued to be OUR friends, people we know through various organizations, autism causes, etc. Which is fine of course, but was it about Nate and what he wanted? <br>
<br>
Well how could it be? He can't tell us. It's very similar to how I continue to play detective whenever he is "fussy", trying to figure out what is wrong. He still can't tell me, although he is getting closer.<br>
<br>
He watches the same scene of "Frozen" over and over again- does he like "Frozen"? Or the movement of the snow in that scene? Or the noises? Or the song that is playing? If I did a Frozen themed birthday party would he love it? Or wish for an avalanche themed birthday party (because that's the part he is watching on repeat)? Let's take it a step further- does he want a party? Does he like being in a crowd? When do I, as his mother, know that he is actually happy?? <br>
<br>
Here:<br>
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Right Here is my happy son</div>
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Below is a situation that would make most kids ecstatic. I took Nate to our local toy store today, just let him loose, and waited for him to "find" a toy he would like for his birthday. There is a snip it of that situation in this video. We were there for over an hour. He sat on one riding toy, and played with the jingle bells. I bought the riding toy- but only after making sure the toy store accepted returns. </div>
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As with most things in our world, results are not typical. So guess what? We have decided birthdays will not be typical either! I am not wrapping his presents this year, I am setting them up. I have no expectation that he will play with any of them, at least not initially. I have some new beads I will give him, because I KNOW that will make him happy, and it's HIS day. He deserves to feel happy! </div>
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We will have chick fil a for dinner. I will make a cake, with a little hill and olaf rolling down it (aka the avalanche) and we will probably all say "what the what?? THAT happened" (if you've seen the movie you know). We will get in our jammies, and cuddle in bed with one of the sweetest boys who has ever lived. </div>
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And that is how we are gonna roll!</div>
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Jennyhttp://www.blogger.com/profile/06479192285933054835noreply@blogger.com3tag:blogger.com,1999:blog-5362113364349699326.post-21468703059200918072015-11-21T20:26:00.001-05:002015-11-21T20:43:10.201-05:00What bothers meFeeling helpless<div>Feeling like a failure as a mom</div><div><br></div><div>I don't even know how to begin this post.</div><div><br></div><div>I haven't written in so long because it's all too much.</div><div><br></div><div>I can't even go into details, I can't because the little boy involved in this scenario doesn't even know about the hurt this mama is feeling. He doesn't know that his little life will soon be turned upside down. And I have no plans to tell him- not until I have to. </div><div><br></div><div>In the meantime what can I even say here? How can I talk about our journey when I can't even talk about what's upsetting me so much?</div><div><br></div><div>I guess I can say this</div><div><br></div><div>I have taken on a lot as these boys' mom. More than I have ever discussed, more than I ever knew that I could. And I am happy to do it. I don't mind the hours I have spent on the phone with insurance- because I have gotten the boys what they needed. I don't mind the hours spent in waiting rooms- because the boys were receiving crucial therapies. I don't mind the constant calls from schools, developmental pediatricians, psychologists, behavioral therapists, teachers- I want to know what is going on with my children, I want to help them be the best that they can be. I don't mind having 2-3 therapists in my home every single evening- in fact I welcome it. </div><div><br></div><div>But I do mind feeling like a failure. </div><div><br></div><div>I do mind feeling that all the tears, and effort, and prayers, and pleading, and working have not gotten us to where we need to be. I do mind feeling as though my son is about to suffer as a result of us not making the progress we needed and wanted. I do mind feeling like people are giving up on him when he has the potential to be something AMAZING.</div><div><br></div><div>I do mind feeling like he is being "lumped" into a category where he doesn't belong. I do mind that I have been screaming (sometimes silently) for years that the school was not seeing the bigger picture and that he was going to stumble because of it- and that now that he is, it feels like he is being punished. Like they wanted to keep him in the "mainstream" category for so long that now that they have changed their minds, they are choosing to lose faith in his abilities and assets. </div><div><br></div><div>It bothers me that our family is going to feel even more isolated than it already does, that I feel like both my son and myself are losing a huge part of our social support circle- one that is very hard for a kid like mine to build. </div><div><br></div><div>It bothers me that the last shred of parenting "normalcy" is now going to be gone.</div><div><br></div><div>Most of all it bothers me that I couldn't prevent it, I can't fix it, and I won't be able to shield my boy from the confusion and fear that change will bring.</div><div><br></div><div>But I tried so damned hard, I really did .</div><br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-a36Ko4dHSew/VlEdrSnCJSI/AAAAAAAAQfE/03xNqGvCuLs/s640/blogger-image-1679515891.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-a36Ko4dHSew/VlEdrSnCJSI/AAAAAAAAQfE/03xNqGvCuLs/s640/blogger-image-1679515891.jpg"></a></div>Jennyhttp://www.blogger.com/profile/06479192285933054835noreply@blogger.com2tag:blogger.com,1999:blog-5362113364349699326.post-66740548402555261182015-10-09T21:03:00.001-04:002015-10-09T21:10:34.716-04:00Sometimes All I Need...Is a pat on the back, a hand on my shoulder...a reminder that I am not a bad mother.<div><br></div><div>Sometimes I don't even realize how low I am feeling about my boys' challenges until someone says to me- "you are doing a good job" or "I have been a behavioral therapist for 20 years and trust me, you are a wonderful parent." It doesn't occur to me that I think of myself as this terrible, inadequate mother- but I do.</div><div><br></div><div>It also doesn't feel like the teachers at school, peers, and many other professionals can really see what I am trying to do, how much I am trying to do. That I would love to take my sons to occupational therapy twice a week, but it would truthfully require the therapist to accept appointments at 10pm (oh and a lottery win). That I sit with my son both in the evenings after school, work and therapy, and in the mornings, working on concepts that his peers apparently fly through. That sometimes it takes 20 <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">minutes of begging to simply get him to look at a worksheet, much less start it. That I would rather take a bullet to the brain than think or hear about all of the typical kid experiences it feels like my sons are missing out on.</span></div><div><br></div><div>So when just one person has these things to say to me- and I know that she knows what she's talking about- I feel like I can take a deep breath, and for a few minutes put aside the 4 grant applications for services still sitting on my desk, the fact that jacks developmental pediatrician hasn't called me back, the fact that I am taking him to his first cognitive behavioral therapy next week, which we are skipping another therapy appointment to attend. It helps me swallow the times that my son has hit and spit on me this week. It helps me to stop beating myself up over the fact that we are 10 weeks into intensive potty training with Nate and have had not even one single success. Or that I had to choose between taking him to speech with a quality therapist or to OT with a wonderful therapist (and I chose speech).</div><div><br></div><div>It also helps me swallow the guilt I feel for taking better care of myself lately- for eating well and taking the time to exercise. I am valuable to my children, my health and well being are not just for me.</div><div><br></div><div>To the person who reminded me of this today- thank you- on so many levels.</div><br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-zMBmhKcTo0c/VhhjwkT2UBI/AAAAAAAAPzE/5p0hNtttYgY/s640/blogger-image-1702927793.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-zMBmhKcTo0c/VhhjwkT2UBI/AAAAAAAAPzE/5p0hNtttYgY/s640/blogger-image-1702927793.jpg"></a></div>Jennyhttp://www.blogger.com/profile/06479192285933054835noreply@blogger.com0tag:blogger.com,1999:blog-5362113364349699326.post-19736417235746955472015-08-06T13:03:00.001-04:002015-08-06T13:03:08.765-04:00To Those Who Have Said....<div dir="ltr" style="text-align: left;" trbidi="on">
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As autism parents, we all experience an incredible amount of
judgment, advice, “words of wisdom” and whether intentional or not,
belittling. Sometimes it is truly a
result of someone trying to make us feel better, the whole “it’s not that bad”
idea. But the bottom line is that when
your children are young and newly diagnosed with autism, well, it IS that
bad. It’s awful. I am sharing this not to make anyone feel
badly who may have said these things, but to help open people’s eyes to the
truth. Autism is not a blessing in our
house, it’s not. And frankly, autism is
one of the most belittled, minimized, diagnoses out there right now, between
the kids who reportedly “recover”, to the kids who thrive, to the idea that it’s
overdiagnosed and not that big of a deal.
Then to the, “why are you treating them, accept them as they are?” or “what
else are you doing for them?”, or “why seek medical treatment when it’s a not a
medical disorder?” (YES IT IS!!!!). Everyone
wants to fight over what causes autism, and talk down when they don’t agree
with another’s opinion. Everyone wants
to debate what to do for children who have autism. Nothing we do as autism parents is respected
in the way that it should be. Everything
is minimized, until another child drowns, or a high schooler goes on a shooting
rampage and all of the sudden people are talking about him/her being on the
spectrum. It’s a mighty fine ball of wax
to be handed as young parents- because there is no way to “do” this. There is only feeling your way and praying
and finding amazing people who have been there and want to help. It’s a big cluster fuck if I’m being honest,
which apparently today I am. <o:p></o:p></div>
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So without further ado, to those who have said:</div>
<div class="MsoNormal">
<o:p></o:p></div>
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<br /></div>
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<b>“Of course Nathan is
going to talk, he’s just a little late- I have zero doubts and you need to stop
stressing so much about it”<o:p></o:p></b></div>
<div class="MsoNormal">
Wrong- here we are today, at almost 6 years old. I was right to stress because so much blood,
sweat and tears have gone into getting my sweet boy to say MAMA to me,
purposefully that you can’t even fathom it.
You have no idea what that feels like, to put your heart and soul into
one little being every single day for 6 years and finally, finally hear him say
mama (again in our case, as he said it before he regressed and then lost
it). Any parent, if their child is not
developing normally, is going to stress- and they are right to! You do not have the answers- no one does-
that’s the scariest part of all. <o:p></o:p></div>
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<b>“Get him into early
intervention, you won’t even recognize him by next year” (said by a teacher, well meaning)<o:p></o:p></b></div>
<div class="MsoNormal">
I did it- 4.5 years ago.
I recognize Nathan quite well. He
is progressing now. But for close to 2
years, I can truthfully say that he did not.
Everyone knows a kid who had intervention and made incredible strides-
it’s so awesome. But it is not the
norm. Not every child does this. Mine did not.
And for those two years, I was so angry at that early intervention
teacher, because she said it! I waited
for it! It didn’t happen! And God knows I wanted it to. I took him everywhere I could, took
communication classes, took him to studies at Hopkins and NIH. And he didn’t progress- until he did. And no one can predict when and if that is
going to happen. <o:p></o:p></div>
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<b>“my kid is obsessed
with things too”<o:p></o:p></b></div>
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WRONG WRONG WRONG!!!!!! If I showed you an age progression
of photos of Jack, you would see him with airplanes in his hands from age 2
until now, which is age 8. You cannot
have a conversation with my son without him bringing up his obsession at least
3 or 4 times- on a good day. His
obsessions keep him from being able to focus on anything, and I mean anything
else. He struggles in school, he
struggles to eat, he struggles in therapy, he struggles to do really any tasks
because his little brain cannot move past airplanes, or bulls, or whales, or
crabs….it is REAL, and while your child may go through a week, or even a month
of this from time to time, we are not residing on the same planet on this
topic. Not even close.<o:p></o:p></div>
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<b>“He seems fine, and
god is he cute!”<o:p></o:p></b></div>
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Now see, I can understand what you are trying to do here, I
really can. And I more than anyone know
just how cute my kids are. (they
ARE!). But it actually makes me feel
like crap when you say he seems fine (either boy). They are not fine, not even close. They may be doing well today. That being said, while you may even mean, right
at this moment, the statement conveys that there is nothing going on here- and
it minimizes our daily struggles. <o:p></o:p></div>
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<b>“My kids hate changes
in their routines too!”<o:p></o:p></b></div>
<div class="MsoNormal">
All children thrive on routine, I am not disputing
that. But can you go down a grocery store
aisle for a second time without a full on meltdown? I can’t.
Can you take a different route home if there is traffic? I can’t.
Can you walk around your neighborhood a different way? I can’t.
Can you leave the radio playing as you pull into the driveway? I can’t!
When a therapy provider calls and says they can’t make it, or that they
will be late, or that they need to change days, do you worry about how you will
accommodate that change with work, or do you worry about the fact that it will
likely throw your son into a tailspin? I
am B (well and A) That’s what I mean by rigid.
That. <o:p></o:p></div>
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<b>He’ll grow out of it
(in regards to Jack)<o:p></o:p></b></div>
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I just can’t even.
Yes, he has learned some new strategies to help him function a little
better in life. Has he grown out of his
issues? NO. Some of his issues have lessened, he is more
capable of dealing with unusual sounds and things like that, but these issues
are replaced with others, such as new behaviors and even aggression most
recently. This is not thumb sucking
people, or a blankie. This is a lifelong
challenge<o:p></o:p></div>
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<b>“You need to be
stronger”<o:p></o:p></b></div>
<div class="MsoNormal">
This one really sticks in my craw. It was said to me quite a while ago, by
someone who barely knows me, and knew very little of our family situation. Oh, and they were also intoxicated lol. It didn’t make it sting any less. No one knows what all goes on behind closed
doors, not even the people who think they know.
During the time in our lives when this was said, I can now confidently say
that I was stronger than I ever could imagine being and moving heaven and earth
for my family even with lots of resistance from other members of the
family. I handled the situation, quite
frankly, beautifully. Not that I did a
beautiful job all the time, but trust me, if you knew the reality of everything
I was facing, you would never, never say that to me again. EVER.
I have bad days, weeks, even months.
But I put my head on my pillow every night and fall right to sleep
because every single day I know I have done everything I can for my
babies. You try it—you try this life--- and then we’ll
talk<o:p></o:p></div>
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Jennyhttp://www.blogger.com/profile/06479192285933054835noreply@blogger.com2tag:blogger.com,1999:blog-5362113364349699326.post-2699386999533505782015-07-30T15:20:00.000-04:002015-07-30T15:20:14.866-04:00Professionalism, Boundaries, and In-Home Therapies<div dir="ltr" style="text-align: left;" trbidi="on">
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I had a personal experience several years ago that clearly
still impacts me to this day. I worked
with a provider where boundaries were crossed, too much personal information
was shared and an uncomfortable bond ensued that put my well-being at risk. That’s me putting it nicely. In any case, ever since that instance I have
remained very careful around other providers, probably overly careful, as I
think I finally shook my therapist’s hand (yes, I have a therapist! I have two special needs kids are you
nuts?!?) maybe 4 months ago for the first time after nearly 2 years of work,
but it has served me well.<o:p></o:p></div>
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<br /></div>
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See we have SCADS of providers running around in our family’s
situation. Occupational therapists,
speech therapists, special educators, school therapists, many many doctors and
nurses, and now just to add a new dynamic to the situation, ABA therapists and
techs. Who are IN OUR HOME. This throws a whole new wrench into my
distancing technique. I mean I am
cooking dinners, folding laundry, cleaning, and doing my job while they are
there, so there’s not much hiding on my side.
This is why I have come to appreciate THEIR professionalism even more
than I used to, even given what happened in the past. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
I am all for pleasant conversation, I am all for sharing
experiences and being friendly, even friendish.
I have provider’s cell phone numbers, email addresses, and we share many
pieces of information about the boys, and occasionally even chat when it’s
relevant. You can’t be this deeply into
autism, into finding things that work for your child, without this happening to
a certain extent. I am happy to have
established bonds with these providers, I am happy that I am able to help my
kids without feeling like a bully- you catch more flies with honey- and most of
the time that is the god’s honest truth.
The bottom line, at the end of the day though is that these people are
here to help my children. When push
comes to shove, my job is not to like these people or get along with them, or
to even worry about them. My job is to
advocate for my sons and ensure that they are getting what they need and
deserve. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I have had some great recent experiences with ABA, for which
I am extremely grateful. Nate’s ABA
technician has actually really spoiled me for most other techs. I took it for granted when Nate first started
his therapy and up popped two amazing techs who focused on my child and were
committed to his success. We lost one
when she went to work at a social skills camp for the summer, but have had the
other with us since March, and watching her work with Nate shows me what ABA is
supposed to, and can be. We also
recently lost the boys’ actual ABA therapist when she moved, but the new
therapist seems great so far and there are no issues. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
But Jack- poor buddy.
His first tech was almost shy with him, and when behavior management is
one of the main focuses of the therapy, and your kid is super smart, that’s
just not going to fly. Not to mention
that she had difficulty helping him with his math, because she had difficulty
completing it herself. At one point he was taught writing the time on a clock
backwards (minutes for hours and vice versa).
His teachers actually asked me what was going on with his homework
because it was coming back incorrect. I
think they were concerned about my math skills.
This was the first practitioner I have ever asked to leave in my almost
6 year autism journey with Jack. The
fight to get these services was no joke, and I was not going to stand by and
worry that he wasn’t getting what he needed.
Meanwhile, it took nearly 6 weeks to get a new tech. Which is where we are now- one month into working
with Jack’s new tech. Who, when she is
with him, and focused on HIM, is excellent.
But those are the two current issues, and they are HUGE. Since July 6<sup>th </sup>when she started, there have been 4-5
absences and 2 significant latenesses (like over an hour). I have been as empathetic to this as I
possibly can, as I of all people understand that unexpected things happen- but
at the same time, this is about JACK.
And when every session becomes about the professional, and the things
happening in their life, that is not beneficial to my son either. He should not know about deaths in the
family, or pregnancies, or cramping if the tech doesn’t drink enough
water. When he has a meltdown, and I am
reeling and he is reeling, my primary concern should not be that she is
cramping and blaming my son’s behavior for this. I do not need to hear that she is going to
the ER to get “checked out”, when the extent of my son’s aggression involved “ramming”
her with his bike that still has training wheels (by the way, he is not capable
of RAMMING, he is barely capable of forward movement while pedaling due to
gross motor weakness- and I was standing right there, and that is NOT what happened). </div>
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<br /></div>
<div class="MsoNormal">
We signed up for ABA therapy- I went through
MONTHS of fighting to get this therapy into place. I can’t even express to you how stressful
this has been at times, how many phone calls were made, how many times I broke
down sobbing because I didn’t think I could make it happen. So when my child is in the throes of
behavioral issues that are part of an “extinction burst” of behavior brought on
by increasing demands (which are actually positive things- in the long run
anyway), I want to be able to worry about HIM.
Not how his practitioner will react, or whether it will be too stressful
physically or emotionally for HER. You
don’t train to work in ABA and pretend this type of behavior is not going to
happen. This is the reason for DOING the
therapy. I am at a crossroads with this
right now- I don’t want my son to miss any more therapy, but our house is
already full of the drama that having two children with autism brings. We don’t need added stress. This therapy is supposed to help. And help US- not give his practitioner a
place to come to vent about her life. I
really feel that we need a new tech- again, but is asking for this going to
make him miss MORE sessions? He’s
already missed so many because of our previous experience. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
<br /></div>
<br />
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Bottom line- this sucks. Oh and also? BOUNDARIES PEOPLE. Know them, respect them, don't overstep them. <o:p></o:p></div>
</div>
Jennyhttp://www.blogger.com/profile/06479192285933054835noreply@blogger.com0tag:blogger.com,1999:blog-5362113364349699326.post-56280696818496254952015-06-01T22:56:00.000-04:002015-06-01T22:56:35.347-04:00Autism, ABA, and Insurance (oh my!)<div dir="ltr" style="text-align: left;" trbidi="on">
<div class="MsoNormal">
We have had some harrowing experiences with insurance
coverage over the past few years. I
think any autism parent can say that. I
do, however, have a unique perspective since I work as a nurse case manager for
an insurance company. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When I worked in the hospital, I adopted the whole “evil
insurance company” mentality, I will admit.
How did I find myself working for an insurance company you ask? For me, it was a matter of family- not
working weekends, holidays, nights, having a regular schedule, and gasp….making
more money. Oh, and working from
home. Understand I would not have stayed
at this job for coming up on 9 years if it was not also intellectually
challenging, and if I didn’t come away with the feeling that I have helped
someone significantly pretty much every single day. Anyway, enough about me. What I have found over the years is that this
whole insurance “vs” (for lack of a better word) medical provider relationship
is MUCH more complicated than most people could ever realize. And while it’s so much easier for us as
patients to lay the blame on the insurance company, it so often isn’t the
case. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
For a few days last week, I thought this philosophy was
coming back to bite me. My husband’s
employer does their open enrollment in June and the new insurance starts July 1<sup>st</sup>. I should start by saying that when my husband
was offered this position, we vetted the health insurance plan almost more than
the actual job, and it was just as important, if not more so, than salary. The insurance was amazing, with a few small
exceptions, and it really did influence our decision to make the change. And for the first time ever, my sons were
able to get ABA. If you follow my blog
on Facebook, you know just how amazing this has been, especially for our
younger son. We are seeing so much
progress, and we only started ABA back in March. So when rumblings started that they would be
switching insurance providers, my mind started going a million miles a
minute. I asked John so many questions
that I am sure he was ready to muzzle me (no comment John, no comment). I am sure I am obnoxious, but it’s with good
reason. I can’t even begin to explain
how many hours I spent filling out assessments, asking for letters from
different people, faxing, oh did I fax, and calling the autism care coordinator
(and constantly slipping in the fact that we work for the same company). It paid off, and the team we have in place is
amazing. The idea of possibly losing
that- I couldn’t even bear to think about it.
Luckily, when we found out who the new company would be, I ran it past
the ABA company coordinator and she said she works with them frequently- so I
tried to breathe.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
And then last Thursday John had his open enrollment
meeting. And he texted me that
everything looked good, except….a small passage in exceptions:<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
“non-medical counseling or ancillary services, including but
not limited to custodial services, education, training, vocational
rehabilitation, behavioral training, biofeedback, neurofeedback, hypnosis,
sleep therapy, employment counseling, return to work services, training, educational
therapy or nonmedical ancillary services for learning disabilities, developmental
delays or autism”<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
Knife in my heart. I
will admit it, I initially freaked out at John.
I try to stay calm, and I usually do a pretty good job, but when it
comes to the boys….yeah, I suck at it.
God bless him, John emailed the HR rep, even sent her a copy of the
habilitative services mandate for Maryland.
I couldn’t just sit there and twiddle my thumbs, so I scanned the entire
document, emailed it to the ABA coordinator and she confirmed my fears- this
was an “autism exclusion clause”. Which
basically meant NO coverage for autism.
Not just aba either- we are talking taking major steps back and not even
getting occupational therapy for autism.
We would likely be able to get limited sessions under the “rehab”
heading if we used the diagnosis of developmental delay, but that’s it. This is right where we started when Jack was
3. Nightmare. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I think the biggest question you are probably asking is how
this is even possible if there is an autism services mandate in Maryland. It’s tricky.
Here is a link to some information from pathfinders for autism, which is
a great organization that literally helps you find your way through this
ridiculous system.<o:p></o:p></div>
<div class="MsoNormal">
<a href="http://www.pathfindersforautism.org/resources/understanding-insurance/autism-insurance-in-maryland">http://www.pathfindersforautism.org/resources/understanding-insurance/autism-insurance-in-maryland</a><o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
Crucial information for parents:<o:p></o:p></div>
<div class="MsoNormal">
“Maryland lawmakers approved a Bill in 2012 requiring that
coverage for autism treatment be clarified by regulators under Maryland's
existing Habilitative Services Mandate. The regulation was finalized in March
2014. Only insurance plans regulated by Maryland law are subject to the
Maryland Habilitative Services Mandate.”<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
Read that again- only insurance plans regulated by Maryland
law. <o:p></o:p></div>
<strong><span style="color: navy; font-size: 18.0pt;">Plans Covered</span></strong><o:p></o:p><br />
• Individual Plans purchased in Maryland<o:p></o:p><br />
• Fully Funded Plans purchased in Maryland<o:p></o:p><br />
• Plans purchased on the Maryland Health Benefits Exchange (ACA/Obamacare)<o:p></o:p><br />
• The MD State Employee Health Plan - currently complies with the
Habilitative Service Mandate<o:p></o:p><br />
<strong><span style="color: navy; font-size: 18.0pt;">Plans Not Covered</span></strong><o:p></o:p><br />
• Federal Employee Health Plans<o:p></o:p><br />
• Medicaid<o:p></o:p><br />
• Military Health Plans<br />
• Employer Self-funded (Self Insured) Plans<o:p></o:p><br />
<br />
<div class="MsoNormal">
They even have a link where you can answer a bunch of
questions to try and determine if your child will have coverage. So here’s the thing- my husband works for a
LOCAL government, so we should have been fine right??? WRONG! When I went back and looked at the paperwork,
I saw that this insurance plan was purchased through something called an LGIT
or local government insurance trust. And
guess what, because they formed this trust, and purchased the plan from them and not "locally", the plans are considered “self-funded”,
and the regulations do not apply. That
does not mean they cannot provide the services, it just means that they aren’t
obligated by law. Military health plans,
for instance, have some of the best ABA benefits money can buy (and for what
the military is paid, they SHOULD). But
take the self-funded thing, add it to the autism exclusion clause, and you have
a recipe for disaster. And one
hysterical mama!<o:p></o:p></div>
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<br /></div>
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How can I explain how my day went down last Friday? Well first, I took a half day from work
because Nate had an IV infusion (not covered by insurance, ha) first thing in
the morning. Which was the smoothest
part of our day. I dropped him off at
Cisco Center after this, where he would catch the bus to school (he has had
this infusion multiple times and never has a problem) and headed home to log into work where I found the happy email telling me that ABA
would be excluded from this policy and offering suggestions of possible grant sources (which if you
follow me, you know I have exhausted for other services). Cue the hyperventilation. I called the HR representative- I was kind as
could be- but I am not going to lie, I was sobbing the entire time. About 30 seconds into the conversation I was
100% convinced that my husband’s company truly had no idea that these services
would be excluded. They know the boys
are on the spectrum, and this is a small (think 35 people) organization. This was not done purposefully; they had
tried to mirror the benefits they had with the previous company. In my opinion, this trust seems to offer these small organizations insurance plans, promising huge savings, and ample
benefits, while leaving these services, that not a ton of people need, out to
save themselves some money. And while
not a lot of people may need the services, the ones who do REALLY need
them. The trust is who picks and chooses
the benefits they want the insurance company to administer- so it wouldn’t
matter how many times we appealed the denial of these services, if the
insurance company wasn’t instructed to provide these benefits, they couldn’t. I had to explain this to my husband who had
the same instinct as most of us, which was to scream “Cigna sucks!!!” Nope, they provide ABA beautifully when the
trust says, include this benefit. It’s
not their choice. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
So about 10 minutes after I got off the call with HR, I
decided to put my head down for about 5 minutes to try and calm myself
down. As in, I set my phone alarm for 5
minutes and did some deep breathing.
When I opened my eyes, I had missed TWO calls from Jack’s school. I called back and the health room assistant
informed me that Jack had two hives on his arm, and did I want to come get
him? Ummm, how about some calamine
lotion instead?? Sigh. So I focused on work, started getting a
little bit done, it’s about, hmmm, 1:30 by now.
And the phone rings. It’s Nate’s
school. He fell asleep on the bus and is
completely out- could I please come get him?
REALLY?????? I was honestly
looking around for a hidden camera at this point.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
On my walk into the school, I got a call from the HR
rep. And just as simple as that she said
I want you to know that we are having the language in the policy changed- these
benefits will be covered for your boys.
I am not the least bit ashamed to say that I burst into tears and
literally told her that I loved her and was going to send her flowers. Not the least bit. This woman made a few phone calls and
prevented all of my children’s progress from going down the toilet. She is my hero. I picked up Nate, sobbed on the teacher’s
shoulder for a minute, took Nate home (where he slept another 3 hours) and
tried to finish work between hiccups. <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
The morals of this story?<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
1- Be obnoxious to
your husband if he is the insurance policy holder. Ask him a million questions and make him paranoid. Why? Not because you don’t trust him, but because
it works! The fact that John looked at
the benefits summary so thoroughly, spotted the clause and knew enough to point it out, saved
our boys' services. Because finding the problem
during open enrollment? It’s
fixable. Now, we have the extreme luck
of being in a small organization- had it been my husband’s previous job he
would have been one of 6000 and we just would not have mattered that much. But this employer also wasn’t offering
benefits through a trust either, and would have had to comply with the
mandate. Bottom line is that had John not
had the wherewithal to point this out to me, if we had missed this, the problem
would have been much, much harder to fix.
husband=hero.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
2- If you have questions or concerns about coverage, take
them directly to your current care provider- at the end of the day, they want
to keep you as clients, paying clients.
And they will give you a straight answer. The ABA company also is a hero in this
situation because my concerns were confirmed and made me more confident in
speaking up.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
3- Don’t blame the insurance company (not all the time
anyway- I am still pissed that I have to take one of my meds twice a day
because they won’t pay for extended release) - they are administering the
benefits they are instructed and paid to administer. The decisions are often made by your
employer, or a trust, or the government.
The insurance company is the messenger in many of these cases<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
4- Don’t mess with this autism mama!!!! I mean business! And I am getting smarter and savvier
everyday- so there!<o:p></o:p></div>
</div>
Jennyhttp://www.blogger.com/profile/06479192285933054835noreply@blogger.com2tag:blogger.com,1999:blog-5362113364349699326.post-91782973721596824142015-05-04T11:38:00.000-04:002015-05-04T11:38:13.480-04:00A Post Of Gratitude<div dir="ltr" style="text-align: left;" trbidi="on">
<div dir="ltr" style="text-align: left;" trbidi="on">
This weekend my family has experienced a degree of support and love that we never expected. I can't even begin to express how thankful we are, and how loved we feel.<br />
<br />
For autism awareness month, one of the local service dog organizations ran a "contest" for a grant for an autism service dog. The award is $10,000 toward the dog and it's training (note that the total cost is $18,000, so we will still have some work to do if we win). I filled out the application and had Jack color the picture they asked for the applicants to color- this is torture for a kiddo who hates fine motor activities, but he did give it his all. I sent everything in and hoped for the best. All the sudden last week, Jack's picture, and several others appeared on the service dog website and it was announced that whoever got the most votes would win the grant. I had no idea going into all of this that the decision would be based on "votes". <br />
<br />
On Friday I started an event on facebook "Vote for Jack for a Service Dog Grant". John and I invited all of our friends, and added it to a few groups, I reached out to a few fellow bloggers who shared our invite as well. We hoped to get some votes.<br />
<br />
We could NEVER have imagined what would come next. As of right now, with all of the people family and friends have invited, there are over 4800 people invited to this event, and we have had over 1400 votes for Jack. If you haven't voted yet and would like to, just follow the link below (you do have to be a member of facebook) and "like" the first picture, which is Jack's. It is the black dog with the orange collar. Voting is open until Friday and we can use all the help we can get as the competition is close!<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://lh3.googleusercontent.com/-o4vrnHmf_oU/VUeR-AdigwI/AAAAAAAANtA/-7dmuw_qI1g/s640/blogger-image--393706902.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://lh3.googleusercontent.com/-o4vrnHmf_oU/VUeR-AdigwI/AAAAAAAANtA/-7dmuw_qI1g/s400/blogger-image--393706902.jpg" width="340" /></a></div>
<a href="https://www.facebook.com/servicedogswarrenretrievers/posts/864690363601636">https://www.facebook.com/servicedogswarrenretrievers/posts/864690363601636</a><br />
As a family with two kids with autism, we sometimes feel isolated. We feel like many of our struggles go unnoticed, or that people just can't understand what we are going through. Even though these facts remain, I have to say, this outpouring of love and support for our family? It means the WORLD to us. Just everything.<br />
<br />
We have not told Jack that the contest is occurring as we did not want to get his hopes up and have them dashed. But....his birthday is tomorrow. What a fabulous thing to possibly be able to share with him later this week!!<br />
<br />
Here is a little more information about the purpose of autism service dogs:<br />
<ul style="background-color: white; color: #252525; font-family: sans-serif; font-size: 14px; line-height: 1.5em; list-style-image: url(data:image/svg+xml,%3C%3Fxml%20version%3D%221.0%22%20encoding%3D%22UTF-8%22%3F%3E%0A%3Csvg%20xmlns%3D%22http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%22%20version%3D%221.1%22%20width%3D%225%22%20height%3D%2213%22%3E%0A%3Ccircle%20cx%3D%222.5%22%20cy%3D%229.5%22%20r%3D%222.5%22%20fill%3D%22%2300528c%22%2F%3E%0A%3C%2Fsvg%3E%0A); margin: 0.3em 0px 0px 1.6em; padding: 0px;">
<li style="margin-bottom: 0.1em;"><span style="font-family: inherit;">To help prevent the child from wandering or running away.</span></li>
<li style="margin-bottom: 0.1em;"><span style="font-family: inherit;">To help with self-soothing during melt-downs. The <a class="mw-redirect" href="http://en.wikipedia.org/wiki/Tactile" style="background: none; color: #0b0080; text-decoration: none;" title="Tactile">tactile</a> <a href="http://en.wikipedia.org/wiki/Stimulation" style="background: none; color: #0b0080; text-decoration: none;" title="Stimulation">stimulation</a>, whether by petting, hugging, or having the dog actually lie on the child, can help the child learn the skills of calming themselves.</span></li>
<li style="margin-bottom: 0.1em;"><span style="font-family: inherit;"><a href="http://en.wikipedia.org/wiki/Socialization" style="background: none; color: #0b0080; text-decoration: none;" title="Socialization">Socialization</a> (including serving as a "social bridge", so as children and adults come over and ask about the dog, the child with autism is prompted to answer. The parent should not answer questions, but should refer all inquiries to the child. Thus with the dog, rather than having just the parent or teacher try to bring the child out of their own world, the entire community is talking to the child.)</span></li>
</ul>
<div style="background-color: white; color: #252525; font-size: 14px; line-height: 22.3999996185303px; margin-bottom: 0.5em; margin-top: 0.5em;">
<span style="font-family: inherit;">A long-term study of service dogs and children with autism reported:<sup class="reference" id="cite_ref-3" style="font-size: 11.1999998092651px; line-height: 1; unicode-bidi: -webkit-isolate;"><a href="http://en.wikipedia.org/wiki/Autism_service_dog#cite_note-3" style="background: none; color: #0b0080; text-decoration: none; white-space: nowrap;">[3]</a></sup></span></div>
<ul style="background-color: white; color: #252525; font-family: sans-serif; font-size: 14px; line-height: 1.5em; list-style-image: url(data:image/svg+xml,%3C%3Fxml%20version%3D%221.0%22%20encoding%3D%22UTF-8%22%3F%3E%0A%3Csvg%20xmlns%3D%22http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%22%20version%3D%221.1%22%20width%3D%225%22%20height%3D%2213%22%3E%0A%3Ccircle%20cx%3D%222.5%22%20cy%3D%229.5%22%20r%3D%222.5%22%20fill%3D%22%2300528c%22%2F%3E%0A%3C%2Fsvg%3E%0A); margin: 0.3em 0px 0px 1.6em; padding: 0px;">
<li style="margin-bottom: 0.1em;"><span style="font-family: inherit;">“Highly significant increase in <a class="mw-redirect" href="http://en.wikipedia.org/wiki/Pro-social" style="background: none; color: #0b0080; text-decoration: none;" title="Pro-social">pro-social</a> behavior with a parallel decrease in self-absorption."</span></li>
<li style="margin-bottom: 0.1em;"><span style="font-family: inherit;">"Fewer autistic behaviors - examples include clicking noises, repetitive spinning or jumping or hand-posturing (<a href="http://en.wikipedia.org/wiki/Stimming" style="background: none; color: #0b0080; text-decoration: none;" title="Stimming">stimming</a>), and bolting or roaming."</span></li>
<li style="margin-bottom: 0.1em;"><span style="font-family: inherit;">"More socially-appropriate behaviors (such as reaching up for hugs, frequently imitating the therapist's actions, joining or initiating games).”</span></li>
</ul>
<div style="background-color: white; color: #252525; font-size: 14px; line-height: 22.3999996185303px; margin-bottom: 0.5em; margin-top: 0.5em;">
<span style="font-family: inherit;">Autism Assistance dogs can be trained to help keep the child safe. With tracking the family is able to quickly find the child if they wander away and can't be seen. With tethering the family is able to enter the community with their child who has Autism safely. The parent is always in charge of the dog.</span><br />
<br />
<br />
Thanks for helping our family, and most of all, our Jack!!!!<br />
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Jennyhttp://www.blogger.com/profile/06479192285933054835noreply@blogger.com0