Sunday 8 December 2019

Is Ignorance Bliss?

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

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.  

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.  
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.

The mother in this picture had no idea that over the next 10 years she would:
  • cry an ocean of tears
  • question every decision she had ever made about her own health
  • wonder countless times what she did to cause her beautiful baby to endure such challenges
  • beg, a lot- doctors, therapists, teachers, and mainly God
  • lose many of her friends' support as she navigated this new world
  • sleep less than 4 hours in a row every night.  For. 10. years.
  • 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
  • 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.
  • end her marriage
  • lose any sense of herself for a long, long time

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?

With all of that said, the woman in the picture also had no idea that over the next 10 years she would:
  • cry another ocean of tears each time her son mastered a new word, which at times took years
  • question every "norm" put in place for all of our children- medical, educational, developmental, and social
  • 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
  • beg, a lot (let's be real here)
  • gain beautiful true friendships rooted in love and respect
  • learn how little material "things" matter when those things cannot provide what her child really needs
  • do absolutely anything, anything, to help her child thrive
  • slowly begin to find herself again.
And so... maybe it's not?

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.

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.

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.

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".

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.

My son cannot tell me he is in pain.  I just know.

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.  

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.

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.

I think this quote says it best...

Monday 29 October 2018

Autism On The Road

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.

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.

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.

He's still pretty cute, even after all of that
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...
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. 
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. 
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". 
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. 
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.
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.
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. 
Nate literally laughed most of the way home.  See this joyful child?
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.
I feel like I've been run over by a mac truck. 
But it was a good trip.

Friday 19 October 2018

Believe Me

Believe me

It sounds so simple doesn’t it?

I have been my child’s mother, his primary caregiver, and his main means of communication for nearly 9 years.  I know every inch of him; I know what he needs most times before he ever says it.  I know when he is upset, I know when he needs space, I know when he needs to be held and cuddled.

And I know when things have changed.

I know when my baby is not my baby anymore.  I know when he is hurting.  I know when he is on the edge of losing it.  I know when it is coming.  And I know what is coming.

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?  Why must I produce pictures, or video, or god forbid wait for them to witness things for themselves before I am taken seriously?
Had he ever hurt me before?  NO

Did I ever report self-harm before? NO

Did I ever tell you he would eat nothing at all before?  NO 

Did I EVER tell you that I was becoming afraid of the love of my life?  Absolutely not.

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. 

Because I call bull shit.

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. 

Did they think I was lying?  Exaggerating?  Looking for attention? 

I don’t want attention for me or for him, I want my son back.  I need someone to carry this ball with me instead of playing a constant game of keep away.  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. 
I don’t need anyone to tell me that autism cannot be medicated.  He is almost 9.  He was on nothing before this summer.  I do not want to medicate his autism.  I want to keep him safe from himself.  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. 

I don’t need anyone to tell me that he has gut issues.  I concur.  And guess what? This fiasco started after I attempted to address these issues with a supposedly amazing probiotic.  For us it was most certainly not amazing.  And until a professional looks at him and tells me what they think will be safe, I am not rocking this boat. 

I don’t need anyone to tell me that he is having anxiety.  I KNOW.  We have matching anxiety at this point.  I can feel it radiating off of him almost constantly.

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.  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). 

You are not the one who puts your child on the bus with tears in your eyes several mornings a week.  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.  You are not the one who keeps your phone volume on at all times just in case.  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.  You are not the one who faces friends and family with hopeful looks on their faces, asking how things are going.  You are not the one who opts to keep your mouth shut, because you don’t want their hearts to break too. 

Things are the same.  Or maybe worse.  I am becoming numb.  I am doing my best.  And I am not making any of this up.

Believe me.  I wish I was.   

Saturday 28 April 2018

Cynical, Realistic, or Well-adjusted?

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.

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.  

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.

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.

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.

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.

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.
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. 

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

Saturday 18 November 2017

Giving Thanks for Support

It’s been over a year, so I feel like most importantly I need to say hi. 
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.  And so I hang in there for a while longer.  I figured eventually I might have something else to say.  And finally I do.  The timing is perfect- Thanksgiving!  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.  While the last 6 years have all been difficult, this past year has left me reeling and questioning everything in my life. 
Except that at the same time, it has shown me some really important things.  I have come to realize that there are many many people out there looking out for my family.  People who have been there every step of the way, people who have expected nothing in return and have just loved us. 
We all have times when we have literally “reached capacity”.  Our brains and our hearts have no room left to absorb any more pain.  Have you ever shown up on a friend’s doorstep and just her smile has made you burst into tears?  Like really ugly cry?  For you know, an hour?  I hadn’t had that happen since college, until this past year.  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.  These are not people who come swooping in and fix things (no one can do that), these are people who:
Stand in front of me to hide me while I stand in a corner sobbing.
Respond when I message them in the middle of the night without missing a beat
Reach out to support me even when they haven’t seen me in 8 years
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.
Sneak things into my son’s backpack at school that will help our family.
Take my son out to dinner so I can work late
Show up with 2 hours notice to watch the boys so I can attend a very important appointment
Fly halfway across the country to be there for us during a difficult weekend. 
Drive hours in the car while 8 months pregnant to hold my hand.
Listen to my crying on a daily basis even though they have never even met me in real life. 
Bring food to my family when they are insanely busy themselves.
Fix my son’s broken zipper when the very sight of it broken makes me cry (yes, I know)
Replace every light bulb in our home with energy efficient ones.
Literally disassemble my elliptical machine to get it down the stairs. 
Bring 10 lbs of flour and sugar to my house so I start working on my annual pumpkin bread!
Continue to pull every ounce of ability out of our children on a daily basis. 
Tell me over and over again that I am a good mom, even though I never believe it.
I don’t know how to thank all of these people for the kindness and compassion they have shown us.  I know I can never repay them, and that this list is also completely inadequate.  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.   Or just called (ok we’re moms let’s be real- texted) and asked us to get out of the house to do something. 
I don’t have the right words this time, so just thank you.  We are a definite work in progress, we are struggling, but at the same time we are pushing through.  Thank you.


Friday 9 September 2016

What A Difference!


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!? 

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. 

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. 

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.

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.

This came from one of his teachers:
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.

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!!!!

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.


Monday 18 July 2016

When The Educators Need To Be Educated

I have been struggling over the last 6 weeks, trying to find a way to describe what has been going on with Jack.  I am not someone who jumps on my blog and bashes people.  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.  However I do try to be honest about our experiences as a family.  And I do want to share what we have been going through.

Before I do, I have a confession.  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.  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.  So why were so many parents of special needs kids calling public school a nightmare?  Fighting so hard with staff? 

All it took was one bad experience.  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.  For the most part, we have had completely positive experiences.  Even Jack’s initial elementary school, which has a reputation for being particularly difficult on special needs families, was over all very supportive.  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.  And to be fair, the program did “offer” this. 

I wish I could pinpoint what happened.  Where it all went wrong.  All I can really say is that the new school was not prepared to handle my son.  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.  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!  In school?  I was told that he was not “capable” of “being with his peers”.  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).  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.  Something that my 6 year old “severely autistic” son does daily at his school, because he is supported.  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.  No matter what justification was given to me, my opinion remains that the school did not want to deal with my son.  They did not like that he, as my husband so eloquently put it “upset the apple cart”.  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.  He is not naughty- but he is not quiet.  I think this was not appreciated by some of the staff.  I think his need to socialize and unfortunately disrupt some of these other children was resented.  I think that any and all possible behavioral issues were emphasized and examined under a microscope.  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. 

I am not a mom who puts her son up on a pedestal.  I have always advocated for more services for him, I have recognized his struggles and taken action as much as humanly possible.  That being said, this spring was the first time I have ever experienced the feeling of my son seeming to be targeted.  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.  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.  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.  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.  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.  He chooses a quote that sounds threatening, and is reprimanded as though it was an independent thought.  Yes, it was inappropriate, I get that.  But was it meant in the spirit in which it was received?  Ummmm, no way.  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….

I mean, when he gets upset at home and cries he says “tears run down his spiny cheeks”.  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.  He is telling me “I am sad, so I am crying.”  And I get that, so I don’t look for whiskers, or god forbid quills!

I’m not suggesting he doesn’t have any behavioral issues, because he does.  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”.  Our children’s atypical behavior, while it has not changed, does stick out more than it used to.  And in a new setting- they are penalized for it.  Inappropriately.  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.  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.  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).  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.  When you are treated like an "issue” in a setting where you used to feel accepted and even loved, it can be very damaging.  We are just now, in summer school, working through his tears each morning because he does not want to go back to school.

As a parent, this is not only heartbreaking, it is maddening.  I, as Jack’s mom, have been traumatized by this experience.  My level of trust in the school system has plummeted.  I am at risk of becoming “that mom.”  The one that feels the need to drop in for “surprise visits” to ensure my son isn’t locked in a closet somewhere.  The one who calls every time my son comes home saying something negative, to make sure everything is ok.  I do not want to be “that mom”.  I never was.  But my son has the right to an education in the least restrictive environment possible, and he has the right to expect fair treatment.  And without question, he was denied both of these things this past spring.  And he is my child who can talk to me!

At the  IEP meeting with his school back in May, something was said that I will never, as a special needs mom, forget.  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.  We were told that they were not “equipped to handle autism and all the support that is needed for autism.”  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.  I want to say this, for the record.  None of us are- equipped to handle autism when first we encounter it.  I can assure you that John and I were not equipped to handle autism.  And yet, here we are, doing it!  Autism is being diagnosed at a head spinning rate- a rate that is increasing each and every year.  If your school does not become equipped to handle autism, you will be doing a vast number of amazing children a horrible disservice.  My son is phenomenal- and he will be back in a mainstream school in the next few years god willing.  More education for mainstream educators is clearly needed, and needed quickly.  My son did not deserve to come away from this experience feeling like he was a problem.  And it will take years to get him past this.  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.