Sunday, 29 April 2012

Roar For Autism

By the time Jack was Nathan's age I was taking him all over- we did all kinds of fun things together.  I feel like Nathan gets shafted all the time....I never take just him anywhere.  So today that's what I did.  Nate and I went with our friends Helen and Lila up to the Roar for Autism (for Kennedy Krieger) in Cockeysville.  I got some real quality time with the youngest member of our family.  The event itself is actually a bike ride/nature walk, followed by a family fun festival.  We just went to the festival this year- would've done the nature walk but there were no strollers allowed.  It was great because it was not huge or overwhelming.  Basically it was a huge playground and then several activities (such as balloon animals, races, a couple of crafts) none of which Nathan participated in.  So we played on the playground and then went to the resource tent (aha, mommy always has ulterior motives).

The resource tent.  Can I camp out in the resource tent?  Can my children and I live in the resource tent?  Because the word tent implies that it is a place where one can stay, no?  I spent probably 45 minutes in the little "tent", talking to everyone I could, signing up for every mailing list I could find.  It has been one of my greatest frustrations on this journey that we have one of the most prestigious autism research facilities in the world in our backyard and we can't be seen there.  Kennedy Krieger does not take our insurance.  Note the lingo of an insurance case manager....most people would probably say that our insurance wouldn't cover it.  It's mutual people (sorry, soapbox time)- Krieger doesn't like the rate that my insurance is willing to pay, my insurance is not willing to pay what Krieger wants.  Both are likely being unreasonable.  Meanwhile, my kids are the ones missing out.  I have done everything I can think of to keep the boys "in that loop".  I located a Kennedy Krieger developmental pediatrician who also has a private practice....where our insurance is accepted.  The boys have been there for developmental assessments.  So at least they are on her radar when she hears of studies, etc.  But I was hoping the resource tent might include some information on studies where I could initiate enrollment myself.  I wasn't disappointed!  Tomorrow I will set about emailing a bunch of primary investigators to see if the boys would be a good fit for individual studies.  And I am also expecting enrollment packages in the mail for the Kennedy Krieger school- so we can get them on the "waiting list".  The waiting list for autism programs and appointments is atrocious. It is also a testament to how great the need is and how limited the resources are.  The resources can't keep up with the explosion in the number of new diagnoses.  While I understand this in theory, I am unwilling to allow this situation to affect my children's care.  I have a feeling that I am going to have to become a very squeaky wheel, but I'm good with that.  On the positive side, the growth of autism diagnoses has spawned many new studies, and of course, these are not paid for by insurance, or the participants for that matter.  So we can go to Kennedy Krieger to participate in these.  They almost always involve at least 2 or 3 developmental assessments, in addition to genetic testing, other blood work and of course, interventions.  If this is the avenue I have to take to get the boys what they need, then so be it.

I spoke with a physician from Kennedy Krieger for quite awhile, she asked about the boys' current therapies, school, etc.  She talked to me about a few studies, and we parted ways.  While I was at another booth, she popped over and took down some more information on the boys.  Call me, call me!!!!  It's like having a my phone working??  How long will she wait to call?  Too bad you can't check for a dial tone anymore :).

Nate seemed to have a good time and had only a few minor meltdowns.  There was a constant wait for the swings, no shock there (for those that don't know, swinging is particularly soothing for a lot of kids on the spectrum- mine both have meltdowns whenever I try to take them off).  There was an elaborate network of "bridges" on the playset and Nate found a triangular pattern to run in and repeated it about 30 times.  Then he ran laps.  He loves to run back and forth over and over again.

our friend Lila joining Nate in his running.....

So I think Nate liked being the "big cheese" for the day.  I certainly enjoyed it!  He conked out almost as soon as we hit the highway to go home.  His little buddy Lila kept reminding her mommy and me to be quiet because "the baby is sleeping".  SUCH a cutie!!!!

Saturday, 28 April 2012

For Posterity

Lazy Saturday at home.....mommy is recovering from a migraine while Natey continues to recover from his strep.  He is taking his medications like a champ....along with his brother's "pinching".....poor kid

Thursday, 26 April 2012

Magic Bullet...

I ran into an old acquaintance from my days at Hopkins last night.  Such a great thing.  She happens to have a little boy who is also on the spectrum.....we couldn't talk to each other fast enough.  The Autism community is huge.....and yet small at the same time.  About 5 minutes into our conversation, I asked her which doctor she is currently taking her son to.  She said, he's older, not an "official" DAN doctor, but he's really probably haven't heard of him.  I told her to try me.  She told me his name, I said great, we're seeing him on May 25th, love how he brushes his teeth while he's on the phone with you.  What a HUGE comfort it is to know that the physician you are trusting to care for your children is trusted by someone you have a tremendous amount of respect for.

So we talked for quite a while, compared supplements, diets, etc (we are doing very similar things).  We discussed various treatment options and I was able to hear her take on them (her son is a bit older, so she has been around the block a bit more than she has been a nurse longer than me, and helped train me when I was a new nurse).  Just being able to speak with someone I know and trust who is going through something similar to what our family is going was such a huge relief.  Support groups are great, other parents are great, but nothing can replace that familiarity.  She warned me not to expect a miracle with the new doctor....she emphasized something I am slowly learning to accept as time goes on.  There just is no magic bullet for this.  It's a process and Nate isn't going to come back to us over night.

We had another home visit from the head of Infants and Toddlers on Tuesday morning, along with the educator who usually comes.  Once again, I asked point blank....are you concerned about his lack of progress?  This time she said she would be lying if she said she wasn't.  They started talking to me about implementing some non-verbal communication tools, such as PECS (picture exchange communication system).  Basically, the child hands you a picture to communicate what they want/need.  Instead of talking.  Because they can't.
Fortunately, we have a whole set-up for PECS from when Jack was a bit younger.  We didn't have to use it for the same purpose with Jack (God knows Jack can communicate his needs).  With Jack, we used it to ease transitions, give him a visual schedule of what was going to happen next.  So I would have pictures lined up on his board that indicated "wake up", "go potty", "get dressed", "eat breakfast", "go to school", etc.  Having this guide to refer to really did ease Jack's anxiety.  Of course, now we are using it for a totally separate reason....and most of the pictures aren't relevant.  Nate is too young to be able to generalize a drawing of food for "I want something to eat".  He needs an actual photo of the particular thing he wants that he can hand to us.  I am praying this is just a transition to language.  Either way, I am so desperate for him to be able to tell us what he wants that I would do just about anything.  The educator offered to laminate photos for me if I email them to that's next.  couple of examples:

My poor little bugaboo woke up this morning with a runny nose and he was pulling at his right ear.  Normally it's right thumb in the mouth, left hand on the left ear.  Daddy brought the ear pulling to my attention (thanks daddy).  So we went in to see our favorite pediatrician on earth.  His ears looked fine (thank god), and his nose looked viral.  She stated that because of Nate's previous yeast issues, even if he had an ear infection, we might want to try some natural treatments first, since antibiotics have a tendency to wreak havoc on sensitive guts.  The only time antibiotics would be a MUST is with strep.  With that, she took a look at his throat....RED.  She did a rapid strep test, just to double check.....super quick positive.  CRAP.  See, every parent hates giving antibiotics to their's a pain, always worry about diarrhea, other side effects, etc.  But with could cause a whole additional set of problems....the last thing we need is more yeast, more damage to his GI tract, etc.  That's part of how we got into this mess in the first place.  So in addition to amoxicillin, we have to restart...dum dum dum....nystatin.  Oh boy.  We did this around Thanksgiving and it was miserable.  But we'll get through it.  So being a true autism mommy, the first thing I did when I got home?  I consulted the University of Google....dangerous proposition my friends.  I had remembered reading something about strep and autism in the past.  So I typed in "chronic strep, autism" and here is what came up....

Has my kid had strep forever????  He's never been tested before!!!  What's the deal???
Sick :(

See???? Dangerous proposition.  I emailed the pediatrician and said, you're gonna think I'm a moron, but......
Quick response--- nope, Nate does not have PANDAS, however it's important to treat so it doesn't lead to his immune system doing something funky to his brain- especially since we already know it has been malfunctioning in other ways.  Is it wrong that in the back of my mind I am still hoping for improvement on antibiotics??  I am starting to understand a little more each day why people make the journey to Fatima, or run to Europe for newfangled treatments.  I look for anything....pray for some tangible problem each day that will help me solve this puzzle that is my son.  No magic bullet right?  Do I have to stop looking though?  I don't think so....

Tuesday, 24 April 2012

The story of John Davis

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.
Jack's story:
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!
Our first "official" portrait....mommy at 16 weeks in Sorrento, Italy

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.

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 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 :)

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 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.   

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!  

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.  

look how tiny you were!

I love this picture of you next to daddy's hand.....

Early memories:

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)

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 cried for 12 hours your second day of life.  Daddy and I have always thought that you were making up for your birth day.

Daddy driving 25 miles an hour the whole way home from the hospital (this is how we know he loved you right away!)

Riley the dog knocking over furniture in your nursery while trying to check you out.

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 :) )

Daddy and I taking you for your first walk in the stroller.....I lifted the wheels over every bump.

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)

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

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)

Sitting upstairs in my office my first day back at work and crying the entire time.  You, by the way, were perfectly fine.

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.

You laying on your changing table for 30 minutes at a time staring at yourself in your little lion mirror.

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....
How did we go from this......




 To this?????

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...
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!

Sunday, 22 April 2012

Forgot one!

Just a quick follow up to Friday's post.  I really have nothing of consequence to say (hooray!!!).  But this makes me think of my sisters.....

Thank you, that is all!

Friday, 20 April 2012

True Support

It's been a quiet week kid-wise.  NO appointments, no drama.  Just the usual day to day.  So this week has been a blessing in our house.

Several close friends, however, have had really rough weeks.  Huge losses.  Significant hurts.  Weeks like this bring perspective, make me realize just how much I have.  I am not someone who runs in a big group,  in my life I have felt lucky if I take one significant friendship from each experience.  These are all people who I could pick up the phone and talk to at the drop of the hat, and it would feel like no time had passed.  I could text them an expletive out of nowhere and with no context and expect to get one right back!  These are true connections....age, beliefs, occupations don't matter.  One of my best friends is 29 (+31 hehe), lives in Wisconsin and I have met her face to face exactly three times in the 6 years we have known each other.  When I do see her I feel like I need to put up a partition so we can have a proper conversation :).  Establishing this type of friendship is a huge emotional risk.....but obtaining it  is one of the biggest blessings in life.  There have been times when I have given to the point of hurting myself, times when I have been really hurt by those I have risked caring for.  But the times when I have been rewarded with true, lasting friendship have far outnumbered these.  And so I will continue putting myself out there.  Life is too short to risk missing out on someone who could turn out to be very important to me.  Will I continue to get hurt?  Without question.  But I will know who my true friends are.  When the going gets tough....true friends are there.  No matter what.  It's a tough lesson, and one that I have learned the hard way many times.  I have almost lost friendships through my own stupidity and self-centeredness.  I almost lost one of my dear friends when I first met my husband and chose to throw myself into his life as fully as possible.  I am lucky.  She didn't give up on me, even when she should have.  And I count her among one of the very best people I have ever known.  She had a huge loss yesterday;  right now I feel her pain almost as acutely as if it were my own.  So I wanted her to know that I am thinking of her, and I am here.  And I love her.

I want to take a moment to acknowledge the fact that I have learned quite a bit about true friendship this year.  About being a true friend, and recognizing true friendship versus convenience or manipulation.  I have often acted naively  in my life.  For the most part, when it comes to friendship, I choose this.  I want to believe the best in people.  I'm actually quite frequently right- but I have also been duped at times. The difficulties in my life over the past year have really clarified in my mind who I can trust, and who I can't.  "If you give your trust to a person who does not deserve it, you actually give him the power to destroy you."  This is a lesson I seem destined to learn over and over again.

There are so many friendship sayings out there...."A real friend is one who walks in when the rest of the world walks out.". "True friendship isn't about being there when it's convenient; it's about being there when it's not." Or my personal favorites....A friend is someone who will bail you out of jail. A best friend is the one sitting next to you saying "boy was that fun." and "A true friend is one who thinks you are a good egg even if you are half-cracked."

I was having a typical text conversation with one of my closest friends the other day....she is just about as high strung as I am and was questioning me about health issues.  She told me she felt sorry for me that I was her only friend that was a nurse and I told her I was used to these kinds of questions.  Hell, my next door neighbor knocked on my door last night with a freaking cracked bloody skull so I could tell him if he needed stitches (I'm a TRANSPLANT nurse buddy....).  I started giving her examples of all of the health conditions I have been asked about and she said something along the lines of "I see neurosis runs amongst your friends".  My reply?  But of course, how else would I fit in?  We are ALL half cracked around here!  And I wouldn't have it any other way!  How boring would that be?  What she doesn't understand is that she could knock on my door at 3 am and ask me to examine her gangrenous pinky toe...I would invite her in and fix her a cup of coffee to boot.  She has been there for me unconditionally....has answered my phone calls and heard only sobs, has gotten many of the aforementioned expletive texts :).  She has never told me she is too busy (even though she is), she has never told me that I am being ridiculous or negative.  She has never judged me (this is not to say she does not express her opinion, she just still loves me when I ignore it).  She is the first person who finally admitted to me that something was "off" with Jack.  She validated my fears, she helped me face them, when no one else would.  So if she skins her knee, bumps her head, or has a problem she wants to talk about, I am there.  That is what true friendship and support are.

Tuesday, 17 April 2012

Oh Crap....

I was trying to decide what to call this post.  I really wanted to call it Oh Sh**  but couldn't bring myself to do it.  I have tried to keep this blog somewhat upbeat thus I am going to deviate a bit because I am very frustrated.  NOTE:  if you are the least bit squeamish, do not proceed!!

For those of you who I am pretty close to- remember the WORST thing that Jack ever did as a toddler?  The one that started about the time I was 8 months pregnant with Nathan and continued for a good 6 months at every opportunity?  One that involved untold amounts of bleach, lysol, laundry detergent and many, many pairs of one piece pajamas?  God has a sense of we go again, with Nate. 


Before proceeding, repeat after me.....he is cute, he is cute, he is cute...

There is a section of my autism journey guide called "the poop pages".  What, you ask?  I don't think I need to repeat it.  When Jack was a little over two, we moved him into his "big boy" room, as we needed the crib for the new baby.  Nap time became a this day he has no shades on his windows because he used to yank them from the brackets.  He would knock every book he owned off of the bookcases, he would stand at the door and scream.  All while I was working down the hall.  And when none of that worked.....he went, how shall I say it...diaper diving.  Now I know that all little kids explore this "avenue" at some point in their childhood.  But kids on the spectrum take it to a whole new level.  Tactile experiences are especially intense....they either love or hate play dough, dirt, mud....other umm, things.  Both of my children appear to love tactile stimulation.  On the walls, their toys, themselves....I think you get the point. Daddy affectionately coined the term "smearcus".  Funny how you can joke about stuff when it happens while you are at the office!   I started putting Jack down for bed and nap with one piece pajamas on to curtail this issue.  Which worked well until he figured out the zipper.  Then we had to get footless one piece pajamas and put them on backwards so he could not get to the zipper.  He never necessarily "outgrew" this.  I just decided to give up on nap time because it was way too stressful.  And eventually (and I do mean eventually) he started using the potty consistently.  It is one of those parenting experiences where you thought you had reached the point where you could look back on it and laugh.  Yeah, I'm not laughing anymore.

So Natey started "experimenting" about 2 weeks ago.  Last Thursday was the first really big "incident".  And it was BIG.  And discovered about 15 minutes before I had an appointment 10 min from home.  Awesome.  Yesterday though....yesterday was rough.  I had gone upstairs for 15 minutes of "respite" after a very full day before we headed to Rolly Pollies.  As I was coming back down the stairs, I heard "oh crap" (thus the title of the post) from the front hallway.  Then I observed daddy dashing up the stairs with Natey in tow.  Shortly thereafter...."Why, son, why, why???"  It always amazes me how grown men can completely freeze in the face of a little poop or puke.  I guess I am a bit insensitive to this since I worked on an oncology unit where this was just the norm.  And let's face it....we're dealing with little kids.  What I encounter at home will never even compare to what I dealt with in the hospital.  Not that it makes it any less disgusting.  Anyway, so I decided to be nice and go upstairs and take over.  Sometimes it does not pay to be a nurse!

The big question- is there any way to make him STOP doing this??  He understands no, but I don't think he always connects his precise actions with us saying it.  Unlike Jack when he did this.  Not that it made a difference at the time anyway.  We tell him no while cleaning him up, but the problem is....he LOVES the shower.  Loves it!  It's like a party in the tub every time he does this.  Great reward, no?  Unfortunately I fear we are just going to have to do everything we can to prevent any opportunities and wait it out.  I was so hoping we wouldn't have to go through this a second time!

Just Not Through Your Nose......

Sunday, 15 April 2012

Something New

Welp, it happened.  After 5 years, we finally left our children with someone else for the weekend.  For the first time.  Unless you count that night when I was in labor with Nathan- technically he had not been delivered, so that counts as a night without kids, right?  We told a couple that this weekend and their eyes just about bugged out of their heads.  I have always had a pretty severe case of mommy guilt- I never planned on being a "working" mom, away from my kids during the day.  So that's one of the main reasons we have never left the boys.  Especially, of course, since their diagnoses.

The fact that my parents are nearby and have cultivated a close relationship with the kids is really what made me feel ok about going.  Even then, this wasn't a leisure trip, but I won't bore you with those details.  Every parent out there is cognizant of the fact that while children bring so much joy to a family, they also bring significant challenges.  I felt naked all weekend without the boys, much like any parent leaving their kids for the first time I would imagine.  However, I won't deny it, it was liberating.  We got stuck in traffic- so what?  No one was in the back seat screaming "it's our turn" or "mommy go through the cars!".  We ate gluten, and lots of it!  When we arrived at our destination, I sat there and let the car run for a good 30 seconds, just to enjoy the lack of a little person screaming "turn it the car going to die???"  Waking up in the morning and just taking care of myself?  Putting on makeup BEFORE breakfast?  Showering whenever I wanted to?  How did I ever think I was busy before I had kids???  Like I said, every parent can relate to most of these issues.  It's difficult for me to put into words how intense Jack is, or how touchy Nate is with transitions and new situations.  I feel like trying to understand parenting a child with autism when you have neurotypical kids is much like trying to understand being a parent at all before you have kids of your own.  It is impossible (and God does that for a reason :))  All of the adjustments we have made for the boys' needs have taken place gradually, so it's hard to remember specifically what they are.  I mean, most people don't call a restaurant at least twice before taking their kids there to ensure their dietary restrictions will be met.  Most parents don't start prepping their 4 year old days in advance to go out to dinner- do they?  "Jack it will be noisy, there will be lots of people, lots of lights, you will have to wait for your food, please don't scream at the waitress..."  Even with all of this, he needs constant reassurance and often ends up with his hands clamped over his ears in a matter of minutes.  Yes, we prefer to eat in or get take out these days.

I have spoken several times about how challenging this year, since diagnosis, has been for our family.  But I often forget, our family has been dealing with the daily issues that autism brings for at least 3 years.  And in some ways (SOME), the diagnosis has brought us some relief.  I no longer have that feeling of "I'm a bad parent".  I don't wonder (as much) why I can't soothe my children a lot of the time.  I don't wonder why they tantrum so often.  Or why Jack has such a hard time writing, or cutting with scissors.  It's nothing we, as parents did.  We love, take care of, and nurture our children as well as any other parents.  They are not going to react the same way to discipline, or comforting, or new situations.  As parents, my husband and I have taken on too much ownership of these issues for too long.  In some ways, it is freeing to finally understand that some of this is out of our hands.

To be away from these issues for two whole can I describe it?  I missed the boys terribly, but....I could breathe.  I am an anxious person by nature- trying to anticipate the reactions of two children on the spectrum is tricky and definitely has me wound pretty tightly most of the time.  This weekend I actually felt....calm, for the first time in a long time.  I had the ability and energy to focus on other areas of my life that are also very important.  The boys come first, and they should, but I am finally realizing that this doesn't mean I have to give up myself or sacrifice my relationships.  Having complete thoughts and conversations is a valuable thing, and should not be taken for granted.  And this benefits the children too....sane mommy = happy kids!

My parents had the boys, as I mentioned, at their house.  I packed up all of their food, supplements (in cups labeled for each child for each day) and the other usual accoutrements.  The trunk was pretty full.  And when we got to my parents house it looked as though they had robbed a Toys R Us.  Who knew they still had the play table and chairs, the little kitchen, the Little Tikes car, the doll house?  When I spoke with my mom Saturday night she was "arranging" the furniture in the doll house so they could play with it in the morning.  Ummm, mom, have you met my children?  With one sweep of his hand, Natey will send those carefully arranged furnishings flying- mark my words!  I received multiple texts to see if various foods were "ok" for the boys.  I couldn't appreciate that more!   Per my mom's report, Natey was glued to grandad's side for much of the weekend.  I am thinking he didn't mind too much :).

Over the phone, my mom said that phrase that every daughter longs to hear, "honey, if you ever wondered if we respect your parenting....we do".  Well actually, I think I should replace "we do" with "ugh", but same idea!  Thanks again grammy and grandad!  This weekend was very valuable for our family and it would not have been possible without you!

And now, I am back in my FAVORITE place!!! Are these children precious or what? 

Friday, 13 April 2012

Brotherly love

So many parents that I talk to complain about all of the bickering that goes on between their children.  Constant fighting for toys, attention, tv shows, etc.  I long for this everyday.  Don't get me wrong, I am sure that after awhile it would be annoying, but right now I can't see that far.  Right now I am grateful for every moment that the boys notice each other's presence.

Before Nathan regressed, the boys were starting to play together, but in the past 8-9 months that has pretty much stopped altogether.  They both have social deficits and there have been days where I truly don't think they have interacted at all.  As I have mentioned before, Jack has been making great strides socially.  He is playing with other kids with much more frequency and realizing that he can have conversations with them as well.  A few weeks ago, Jack saw one of his cousins, who is about 6 months younger than Nathan.  He came home and told me all about how his cousin said this, and his cousin said that, including "Jack".  He then looked at us and asked us why Nathan doesn't talk to him.  We explained that he's having a hard time learning, but that he goes to a school to help him everyday and that Jack can help him too by talking to him.  He has asked me this question multiple times since then, and even bent down in Nathan's face on various occasions and said "Nathan, talk!".  Amen, Jack.  If only it were that simple. Nathan's language continues to stagnate despite all of his therapies.  I recently started looking for other specialists to help us and in doing so spoke with one of the leaders of the support group I attend.  She recommended one doctor who is nearby, who....wait for it.....takes insurance!  My friend and I often joke about the foibles of practitioners who take insurance....seems like all the good practitioners these days don't need to (other than PCP's).  So while I was thankful, I will admit I was suspicious.  So I called the office to request an appointment and the receptionist told me that the doctor prefers to do phone consults regarding the children before he will see them, to see if they will be a "good fit".  Ummm, ok.  So when will this "consult" take place?  I am told the doctor does phone consults on Mon, Tues, and Thurs between 7-8 am (when there is a full moon, haha).  OK, so this guy takes insurance when he doesn't have to and then consults with new patients in the early morning on his own dime?  I am told that he will be at home, and may be going about his "daily tasks", but that he will listen and hopefully be willing to take the boys on.  So yesterday I locked myself in the bathroom (for what parent is able to speak sanely at this time of day with breakfast/school shenanigans going on?) and called.  The first thing I heard????  Swish.....spit.  Awesome.  Then good morning, how can I help you?  So is he flossing while I tell him the boys' story?  Guess what?  Don't care!  Floss away buddy, as long as you help my kids!  The actual conversation involved very little information exchange, as when I tell anyone that I have two children on the spectrum, they immediately want to see us.  There was talk of amino acid and heavy metal testing, changes in supplements, etc.  So I am excited!  Let's get going!  And we only have to wait.....6 weeks.  Sigh.  OK, I can do this.  6 weeks is nothing in the autism world right?  Doesn't matter.....mommy is impatient!

So back to the boys....Jack seems determined to make Nathan interact with him.  This is so amazing!  While it is heartbreaking to hear him say "talk!" over and over to him, he is getting through, slowly but surely.  They are starting to "play" at times.  Jack has figured out that Nathan loves to play chase, so he will go up to him, start laughing in his face and bumping him until Nathan starts running.  Then they are off!  All over the place they run, BOTH of them laughing like little crazies.  Mommy Bliss.  Of course Jack quite often breaks out "the pinchers" and after that things have a tendency to go downhill.  But it's fun while it lasts.

This morning for the first time, Jack went into Nathan's room to say good morning while Nate was still in his crib.  My mom has always told me stories of how my older sister used to get me out of my crib in the morning to go watch cartoons.  Until now, I had really no hope of anything like this ever happening.  We sat and listened to Jack "talk at" Nathan for a good 30 minutes.  Poor Nate :)  At one point we heard a shrieked "say hermit crab", then "your face looks funny", and "you must be a genius! say something".  The second two are undoubtedly movie quotes, in case you are wondering.  But Nathan babbled back some of the time, and laughed some as well.  I got the boys dressed and brought them downstairs for breakfast.  Jack sat in his booster seat and then asked to be scooted closer to Nathan.  Yes, I got teary, and yes I took a picture.  Good, good morning over here!

Quick side note, I went to a Stella and Dot Jewelry party last night and discovered that they have a bracelet line that benefits Autism Speaks.  20% of the proceeds from the sale of these bracelets are donated to the organization.  They have 4 different styles, and they are very cute.  I will post the link...check it out, it's for a great cause!

Tuesday, 10 April 2012

It's a sad, sad day.....

My little Jack said something devastating to me today.....he was playing with my pandora bracelet, which he often does, and he grabbed the airplane charm (which is my charm for him) and said "take this off, we need a crab!"  Oh no......this can't be happening.  Airplanes have been such an integral part of our lives for over 3 years now.....are we really, gasp, moving on????

I have mentioned in previous posts that Jack's main passion in life has been airplanes, but I thought I would take just a few minutes (and pictures) to pay tribute to Jack's first true obsession.  Mommy and daddy know more about airplanes than we ever thought we would, or hoped to for that matter.  For instance, did you know that the Albatross is the pride of the German fighter squadron?  Me neither 3 years ago....I also never knew of the phenomenon known as the Fokker triplane.  We have been through the Blue Angels, the "Top Secret" or Blackbird, the Stealth bomber and fighter (and he WILL correct you if you mix them up), the Curtiss Jenny, the Spad, the P-38, the P51 name a very few.  And now he says he's done???  Oh no, I don't think so!  If he's done, then I get to go through all of it- I need closure darn it!

It all began when he was nearing the age of 2.....when he realized that propellers could spin much faster than blades of grass....

Yes, I realize that the cake is a train (I did make it after all), but see the empty car?  That had a plane on it.  Guess who grabbed it before I could get a picture?

And we were off and running....
 at the firehouse.....

 the pumpkin patch....
on horseback...
visiting the new baby brother....

first day of school....

Then there were the airplane adventures....
The airshow (or as daddy and I like to call it....the day from HELL)

The boy was SO OVERWHELMED from the moment we got there.....cried almost the entire day.  good times!

The airport museum...

Could he be any cuter in that cap????

And then there was the trip to the Outer Banks, when daddy and I shelled out some money to take Jack (and Nate) on an aerial tour of the area.  The pilot's name was Eric, the plane's name was Rosie.  It was the best day ever!

Best money we ever spent!

When Jack turned three, he asked for an airplane birthday party.  One thing with Jack....I have never regretted paying attention to detail with him.  He appreciates everything I do when it comes to a "theme".  He noticed everything at his airplane party.  I had to hide all of his toy planes so he wouldn't lose it if his buddies tried to play with them, so instead I replaced them with about 100 gliders.  I figured there was no way he could hold them all, so he would have to be ok with other kids playing with them.  It worked!  Another great day!

black craft paper runway, balloon clouds, paper airplanes.....

Then there was his blue angel halloween costume....

mommy spray painted the helmet yellow and ordered "authentic" decals off of ebay.  The boy was in heaven....

He also tried to "share" his passion with Natey at times...

So really son?  You're done????  Now what???  I hate to tell you this, but mommy HATES hermit crabs.  They are gross.  And the way their legs just spring out of the shell is creepy.  And they are smelly.  Oh man....I miss airplanes!!!!