How Autism Could Save our Sons’ Lives

In November 2004, Gabriel was nine months old, and we were still more than two years away from learning about his Autism diagnosis.  But we learned something else about our little boy’s health that was equally as concerning (sometimes more so) and, quite frankly, terrifies me every day.

I was sitting on the floor at my mother-in-law’s house in Wisconsin, eating a bagel topped with honey-roasted peanut butter, and watching Gabriel perfect his crawling skills.  He saw that I was eating, so he crawled over to me and gave me a precious, “I want some, Mommy” look.  Without a second thought in my mind, I dipped the tip of my finger in the peanut butter and let him taste it.  He acted like he wanted more, so I repeated this one more time.  Then he crawled away and I continued eating.

I can’t remember who saw it first; I think it was Daniel. But what I do remember is he had turned a very bright red in about 30 seconds, and he had made fists with his hands and was repeatedly and quickly rubbing them up and down on his face. I took his top off and his entire torso had turned red, as if he has suffered a brutal sunburn. He wasn’t crying but quietly whimpering, and while I was very scared and beyond confused at what was happening, Daniel was the one to put two and two together first. He said, “Maybe he’s allergic to peanuts.”

I was in shock, but deducted that Daniel might be right. Gabriel wasn’t having trouble breathing (thank GOD), but beyond the discoloration, he had suddenly become extremely lethargic and wanted to lie down. We put him in bed, and called our pediatrician, who couldn’t see him until 2:00 PM that day (it was around 10 AM) so he told us to come in then. (I have SO much to say about this incompetent doctor’s reaction, but more on that later….)

So not knowing any better, we obeyed, gave Gabriel a lukewarm bath, and put him to bed for a nap.

We took him into the doctor at 2:00 PM and he took a quick look at Gabriel, checked vitals, and calmly announced, “Yes, he appears to be allergic to peanuts. Just make sure he doesn’t eat them.” -A quick $200 for him to tell us that.

Well, for the next few months, we did just that, until we spoke with a friend of Daniel’s from college who was also a doctor, and upon hearing our story, our friend nearly lost it.

Doc: “Didn’t that doctor order any blood tests on Gabriel to determine the severity of the allergy?”

Us: “Um, no. Should he have?”

Doc: “Do you have an Epi-pen??!!”

Us: “Um, what’s an Epi-pen?”

Screen Shot 2017-07-25 at 10.14.35 PM

Thanks to our doctor friend (who, BTW, was also the doctor friend who eventually told us that Gabriel had Autism – this guy is our family’s Angel, truly….) but he referred us to a different pediatrician (one who knew his head from his… yeah, you know) and we were quickly referred to an allergist, who conducted the appropriate tests and told us that Gabriel was not just allergic to peanuts, he was deathly allergic to them.

He said the only reason Gabriel didn’t go into anaphylactic shock (when your windpipe closes and you can’t breathe) when I gave him the peanut butter was because I gave him such a little amount.

He said his RAST levels (blood test levels) were “through the roof,” and he would need to have an Epipen near him at all times for now, and more than likely for the rest of his life.

Luckily, he also told us that the allergy was ONLY for peanuts (which is not actually a nut but a legume) so Gabriel was cleared for all other nuts. Some good news….

But very quickly, back to that despicable pediatrician.

ARE YOU KIDDING ME?!

Keep him away from peanuts.”

No tests ordered, no other advice, no other cause for concern, etc. THAT was his advice. He didn’t even bother to tell us that allergies can increase in severity over time, and that Gabriel’s life could potentially be more in danger as he grew older (which has indeed turned out to be the case).

Knowing what I know now, I wish we would have turned this guy in, sued him, exposed his incompetence in a very public way, etc.  I’d gladly do it now but we have no proof, and there’s probably some sort of statute of limitations clause against bringing legal grievances against doctors.

But, 13 years later and I am STILL on fire at this guy.  Let me just say, if you are in Janesville, Wisconsin and you are looking for a pediatrician, do your homework and thoroughly shop around – because this guy is still practicing.

Ok, soapbox over.

Reflecting, Daniel and I were as ignorant about food allergies as we were about Autism. Neither of us had prior food allergies in our families, so we knew nothing and suspected nothing, until this slapped us in the face.

So WHERE did these allergies come from?!

Same place Autism came from, I suppose. Who knows….?

However, studies have been conducted which compared the prevalence of health conditions associated with children with ASD and found that allergies, particularly food allergies, were more prevalent in children with ASD than those without (Gurney, McPheeters & Davis, 2006).

When Noah was born, not only were we on the lookout for Autism but also for the peanut allergy. It was very easy to keep peanuts out of the house and Gabriel’s daycare was on alert, so we weren’t too worried – except for one thing: we could not buy Epipens in Abu Dhabi…!  They literally did not sell them there. The incidence of food allergies was so scarce there that there wasn’t enough of a demand for them.

(Quick jump to present day: This is an issue we are still dealing with. We can’t get them in Jeddah either…). Our Wisconsin allergist told us that eastern-Asian countries such as China boil their peanuts, while western countries such as the US roast them.  When we roast them, certain proteins are brought out, and somehow, the fact that we ingest those proteins contributes to the increased incidence of peanut allergies.

Living abroad doesn’t help our case either.  Peanut allergies are not widely recognized and are largely not taken seriously, and especially here in SE Asia (where we are currently vacationing), peanuts are in EVERYTHING.  Scary..  😦

Anyways, we kept Noah away from peanuts until we could get him tested (usually done at two years old), and sadly, yes, he followed in his big brother’s footsteps as with the Autism diagnosis. Noah’s allergy levels are also dangerously high, and he too must have an Epipen near him – but his levels aren’t as high as Gabriel’s.

Thank goodness (and I’m fiercely knocking on wood as I type this) but we have thus far been successful in keeping Noah peanut-free (except for some peanut-infested birdseed we found him playing with when he was two; a quick bath and some Benadryl solved that without incident.

And just last year, we had Samuel tested – and while we were fully expecting him to follow in both of his big brothers’ footsteps, as with the Autism, God decided Samuel would be spared any food allergies.

I’ve never had happy tears flow as quickly and forcefully as they did when I learned that news.

And here is where Autism comes in, as a potentially positive thing.

Yes, Samuel has Autism, the same as his brothers, but he is NOWHERE NEAR as picky an eater as his brothers.  He’ll try anything, which makes the prospect of Samuel having a peanut allergy downright horrifying.

If a random child were to offer Samuel a peanut butter cookie, he would try it.

Same thing with Gabriel or Noah? – There’s no way would they touch it.

There are not many instances when I am thankful my sons have Autism, but if one of the symptoms of Autism is food aversions – causing kids to be picky eaters – then in this case, I am thankful for Autism.

Because here’s the paradox: although it’s probably because of the Autism that Gabriel and Noah have the peanut allergies, it might just be the Autism that ultimately helps them avoid peanuts and thus, saves their lives.

 

References

Gurney JG, McPheeters ML, Davis MM., (2006). Parental report of health conditions and health care use among children with and without autism: national survey of children’s health. Archive of Pediatric Adolescent Medicine. 160(8):825-830. doi:10.1001/archpedi.160.8.825. http://www.ncbi.nlm.nih.gov/pubmed/16894082

 

 

Accepting Differences

Check out Samuel.  Yep, the one on the right – striking the yoga pose – while he’s supposed to be in position with his classmates for a song, during his recent spring PK3 concert.

Geez.  Such a perfectly symbolic picture for my life as a mom with Autistic children.

And I think that 10 years ago, sitting front row at my child’s concert and watching my child do this?  It probably would’ve mortified me.  

(Oh wait, it did.  Gabriel did things just like this.  So did Noah.)

And even 5 years ago, I think I would’ve still been pretty embarrassed.

(Yes, I was...)

I used to be very shallow and insecure (probably still am, but I hope not….) but I grew up caring very deeply about what others thought, and had an overwhelming desire to conform to what I thought society expected of me.

I’ve been working on shedding this mentality for a very long time, and I’m ecstatic to say – that on the day of Samuel’s concert – maybe I’ve finally grown out of it.

I walked into Samuel’s classroom that day knowing full well that he’d stick out.  I knew that he’d be bouncing off the walls, and not doing the same moves as the other kids.  

And he performed (or rather, didn’t perform) exactly as I expected.

He was all over the place.  Jumping when they were standing.  Standing when they were jumping.  Silent when they were singing.  Singing when they were silent.  It was like he was intentionally doing everything the opposite of what he was supposed to do.

And for the first time ever, this happened:

I laughed, and laughed, and laughed some more.  I gave him a thumbs up.  I shook my head, took a deep breath, shrugged it off when his shadow teacher shot me an “I’m so sorry!” look, and then took pictures and videos of everything so I could remember it forever.

I wholeheartedly embraced his cute, crazy differences!

It was an a-MAZing, liberating feeling.  

And it came out of the blue.  It surprised me.  I couldn’t believe how OK I was with what was happening.

And I walked out of there happy, and grateful, and honestly, more peaceful than I’ve felt in a long time.

So afterwards, I really reflected.  What made this experience so different from all of my prior experiences with the boys’ very public displays of their differences?  

Experiences such as when Gabriel was expected to walk across a stage for his KG graduation and instead threw himself to the floor in a screaming tantrum?  

Screen Shot 2017-06-02 at 10.16.52 PM

Experiences such as when Noah just stood there like an obvious statue when the entire 1st grade class was smiling, singing, and waving their arms in song around him?

Or, when Noah and I are supposed to be decorating cupcakes with his classmates and parents, and he decides to dump an entire container of sprinkles on top and then proceeds to try and inhale them with a straw?

IMG_2160

OR, when Samuel is perfectly fine, but the second he sets foot on the PK playground, he decides to throw his toys, then when I sternly tell him to pick them up, instead he throws himself to the ground and just lies there while kids are stepping over him, trying to play?

I’ve had m-a-n-y such experiences – and most of which, in the presence of parents and teachers (most of whom are my colleagues) – who sometimes shoot me judgmental looks of pity, disapproval (or both), or embarrassed smiles, OR, who are so embarrassed for me that they look away or politely flee the scene.

And yep, this used to really bother me.  

Not only the awkwardness of this happening in front of other people, but just the repetitiveness of experiencing difference.

I would think, “They are SO different than other kids!  EVERYTHING they do is different.

I’M SO !@#$%! TIRED OF THEM BEING SO DIFFERENT!!!!!!!!!

And I don’t know – maybe it’s age, maturity, tired of caring, and/or accepting the inevitable – but I think I’m finally in a place where I can let it roll off.

There is no cure for Autism.  They will always have it.  They will ALWAYS be different.

Might as well soak it up.

It’s not that I’ve lowered my expectations for what I’m expecting from my children.  I don’t want to say that.  I think I’ve just altered my expectations.

I’ve stopped expecting them – all three of them – to be the same as other kids.  

And, I’ve started anticipating and expecting the differences.  In some cases, even looking forward to them.

And as I said, it has given me peace.  A certain peace that I don’t think I’ve felt since before we noticed that Gabriel wasn’t talking.

I’m not on the verge of tears anymore when I see Gabriel or Noah wandering by themselves at lunch, as was the case for the last few years, or when I see how Samuel is the only student in an entire sea of children who is wearing big goofy red earphones during an assembly because of his sensitivity to sound.

IMG_3723

And it’s not that I don’t still feel a small amount of emptiness when I see them being ostracised or somehow singled out.  

I don’t think this feeling will ever go away completely.

Autism is still not a very welcomed guest in our family, but it’s not the mean, hateful intruder that I once perceived it to be.

And I know that if I can’t accept the fact that they will act or behave differently in many of life’s situations – then I’ve got a whole lot of emotional pain ahead of me – pain that might not be necessary – if I can just channel that same mentality as I experienced during Samuel’s concert.

And in the grand scheme, I should never forget how blessed I am to have these precious, little differences in my life.  I’m honestly ashamed for ever having felt embarrassed by them, or sorry for them (or for myself) that they can’t completely conform to society’s standards.

Seriously, shame on me.  😦

But I’m human and flawed, so I’ll keep praying and trying, and will never give up on them, or myself, or our family.

So, OK Autism.  Bring on your differences.  I think I’m finally ready for you.

 

Thankful for Inclusive Teachers

Tomorrow is Thanksgiving, and I am deeply thankful for many things, but something happened this past week that made me exceptionally thankful for my children’s teachers – and for ALL the wonderful teachers out there who work so hard to promote the inclusion of children with special needs.

There was a video that went viral of a teacher in West Virginia forcibly removing the microphone from a boy with Autism’s hand when it appeared it was his turn to speak in a Thanksgiving play – and thereby consequently, visibly devastating him.

(If you haven’t seen it, here is a link for reference): http://ktla.com/2016/11/21/boy-with-autism-brought-to-tears-as-teacher-snatches-mic-at-thanksgiving-play/

Needless to say, Daniel and I were both furious when we watched it. We each made simultaneous comments to the effect of, “I don’t know WHAT I’d do if I saw that happen to one of our boys,” etc.

My eternal sympathy goes out to that sweet boy (Caleb), his poor mother who had to witness it (Amanda), his family – and to every other special needs parent out there who watched it in horror.  I hope the amazing outpouring of love for him somehow makes up for that despicable situation.

Anyways, that video was the impetus for this week’s post, as I have a shining example of a polar opposite situation – a situation in which an autistic boy’s teachers believed in him and gave him an amazing opportunity to shine in a concert – when they most definitely could have placed him in the back – or even made the plausible argument that it would be too overwhelming for him to perform.

It’s like I feel the need to talk about this pure act of kindness to counteract the unintended (or intended) malice displayed in that video.

So when Noah was four years old, he was in a small concert with his class, and he did his best to stand in front of people and attempt to take part in the songs and moves, but it ended up being pretty overwhelming for him, and he cried through most of it.

(Here’s a happy picture of him before he went on stage and turned on the water works.  They performed the nursery rhyme, “Hey Diddle Diddle,” and he played “the little dog who laughed to see such sport“).

screen-shot-2016-11-23-at-7-14-25-pm

So the following year, Noah was five, only speaking maybe 20 words, stimming (shaking) all the time, and very, very shy.

The concert came around again, and Daniel and I were hopeful that he would be able to perform as well (if not better) than the year before.

Baby, just stand up with the other kids, try your best to sing, (and if no singing, just try and mouth some of the words…) maybe participate in a couple of movements with the other kids, and a little less crying would be the BEST bonus!  🙂

So Daniel and I show up to his concert, and watch as all the other PK4 (4 and 5 year olds) classes sing their songs, do their dances, etc.  Precious as always.

Then Noah’s class comes out in front.

Daniel and I slink our way up through the crowd to try and see better. As we’re walking up, we see all the children in Noah’s class nicely lined up in a straight line parallel to the crowd, quiet and ready to perform, some sitting in a row of chairs and others standing behind the chairs.

BUT, Noah is standing up out in front of them all, BY HIMSELF!

Daniel & I freeze.

What the HELL?!

We exchange horrified glances.

I begin screaming in my mind.  “WHY IS he out in front by himself, and WHERE is his shadow teacher?

WHY is she allowing him to be standing up like this, out in FRONT, sticking out like a SORE THUMB?!?!

He must be so scared, or stunned, or embarrassed by being in front of so many people that he doesn’t remember what to do or where to go..

Poor sweetheart.  This was too much for him..

I’m actually on the verge of quickly walking around the back of the crowd and moving closer to where he is to try and fix this situation, since his teacher and shadow teacher seem oblivious.

But I don’t move because just then, the music starts.

I now know I’m too late – it’s too late to do anything about it without causing a scene.

I catch a side view of Daniel – he’s covered his mouth with his hand, and seems to be bracing himself.  He’s as mortified as I am.

I’m FURIOUS. And we work with his teachers. They’re our colleagues – and before this moment – I loved them dearly and deeply respected them.

I start strategizing how I’m going to handle this diplomatically. Maybe a carefully worded email to the Elementary principal?  Or better yet, a face-to-face meeting with the principal.  Yep, this requires face to face, and I’ll open it with my usual, highly-practiced, soap-box rant about the importance of special needs inclusion.

So before I know it, Noah starts spinning around with his hands out.

This is weird. This isn’t usual. But what I also see is that while he is still definitely out in front, his classmates have stood up from their chairs and are spinning around too.

I watch in confusion.

Then Noah stops spinning, walks over and clocks one of his fellow classmates over the head, and both he and the boy fall to the ground.

Nothing in the world makes sense at this moment.

Before I have time to begin praying, both Noah and the boy pop up to their feet, the boy runs off around the back of the group, and everyone stands up and starts spinning again, Noah included.  And Noah is STILL in front.

Wait a minute. There’s a pattern to this.

The air around me is completely still.

Noah finishes spinning, then hits another classmate on the head and they both fall to the ground. Then they both pop up, the classmate runs around the back, and Noah stays out in front.

Daniel and I exchange glances again, but now our expressions have turned from those of horror and anger to surprise and disbelief.

This is real. This is on purpose. Noah is literally dancing, and following a choreographed routine. In front of people. LOTS of people.

He repeats this cycle over and over, and it gets cuter and more miraculous each time.

I’m absolutely stunned, and my eyes fill up with tears.

His teachers believed in him. They included him. And not only did they include him, they gave him the LEAD ROLE in this song.

In one year, he went from not being able to stand and “sing” in front of a small, crowded room without becoming overwhelmed and crying – to this proudly and boldly performing in front of a large gymnasium filled with people, AND having successfully memorized a series of repetitive moves.

Yep, you’re damn right I’m going to have a meeting with the Elementary principal – but now I plan on complimenting her on how absolutely AMAZING and wonderfully inclusive her teachers are.

So now I’m floating, my vision blurred through my tears, and Noah gets down to the very last little girl still sitting in a chair. The only one in the row who has escaped his cute wrath of being clocked over the head and falling out of his/her chair.

And all of a sudden, he turns around and runs as fast as he can towards the end of the row of chairs.

Daniel and I both belt out laughing (because the way he runs is so freaking cute…) and we both assume he’s forgotten to “clock” the last little girl.   (If you watch the video, you’ll actually hear Daniel laugh and say, “He forgot one!”)

But Noah didn’t forget anything. He did exactly what he was supposed to do.

The last little girl wasn’t supposed to fall out of her chair – she was meant to stay in her chair and lie down and fall asleep.

Perfection.

Needless to say, I felt deeply ashamed for having doubted Noah’s teachers – and I have never been so happy in my life to have been proven wrong.

Noah was glowing when we saw him afterwards, and we couldn’t hug and kiss and praise him enough.

He was so puffed up and proud of himself – it was awesome.

And even though he couldn’t really tell us how he was feeling, we could see it in his eyes.

So this is dedicated to Rania, Sarah, Diana, and to ALL the teachers out there who love their students as if they were their own, and believe in them enough to give them chances to shine.

And to Amanda, the mother of Caleb (the sweet little boy shown in that video in West Virginia) I don’t know if you’ll ever read this, but if you do, please know that this is certainly not meant to gloat about my child’s experience when you’ve both just gone through such a horrible and traumatic ordeal.

It is sincerely intended to send out hope to ALL parents of children with special needs.

There are so many teachers out here in the world who will treat your little boy with the love and respect he deserves, and I pray with every fiber of my being that he encounters those teachers soon. I pray that they make him the star of the next show, and believe he is capable of great things, because he is.

Wishing everyone near and far a very Happy Thanksgiving, and if you’d like to see something that might make you smile, here’s Noah’s video:

 

 

 

Alone in a Crowd

I love (and I mean LOVE) working at the same school where my husband works and children attend. It is one of the super-perks of teaching in the international schools realm.

I can have lunch with my husband nearly every single day. If one of our boys is sick, I can be at the nurse’s office in a moment’s notice to offer cuddles. Mother’s Day celebrations? No problem. A short, one-minute walk across campus. Winter concerts? No need to take off work and drive myself (er, excuse me, I forgot where I am, be driven by a driver) across town to the boys’ school.

While I deeply cherish these opportunities, I have to admit (and I feel deeply selfish and guilty to admit this…) that being in such close proximity to my children at school can hurt.

Let me explain.

My coordinator position is such that I am constantly on the move around campus. One of my principals once called me a “moving target.” With responsibilities in both the Middle School (MS) and High School (HS), I walk back and forth between these two areas of campus multiple times a day, which takes me right by the Elementary playground and into the MS field area.

And between all the students’ breaks, lunches, recesses, outdoor PE classes, etc., there is hardly a day that goes by that I don’t see Gabriel and/or Noah multiple times a day. (Samuel, unfortunately, not so much – I don’t make it over to his part of campus very often).

Make no mistake – the ability to see my boys all the time is wonderful, and I do not take it for granted.  Noah is still young and uninhibited enough that when he sees me, even from far across a field, he will sprint towards me with a massive, excited smile and open arms and bless me with the biggest bear hug he can offer. I used to return the favor by picking him up and spinning him around above my head, but sadly, he’s becoming too big for me to do that without throwing out my 41-year-old back… BUT, I can still return the hug and kiss, and ask him if he’s OK. His usual reply is, “Yes, Mommy! OK! Everything’s OK! Love you!” And then he runs back to his class, and I shoot a grateful “thank you” glance and wave to his understanding teachers, who are always so gracious to allow him to do that, and who usually seem to enjoy witnessing our little bonding moment.

Gabriel, who is a pre-teen, middle schooler now, is much more subtle. He usually just strolls up to me, and we exchange small pleasantries.

  • “Hey babe, how are you?”
  • “I’m good, Mom, everything’s OK.”
  • “OK, good.”
  • “Ok, see you after school Mom.”
  • “Love you.”
  • Side kiss
    • (Meaning, not a kiss on the lips but one of those Arabic-style kisses where you touch cheeks and make a “kiss” noise with your lips).

These are the good times and the good feelings. But sadly, with the good often comes the not-so-good.

What sometimes hurts, is that with the constant access to my children at school, I also have a front-row seat to the social implications that being Autistic has on them.

So I’d estimate that 98% of the times that I see Gabriel and Noah, they are alone.

They are either sitting alone at a picnic table (sometimes even with their heads down on the table), or sitting on a curb at the edge of the field watching the other kids play soccer, or standing alone waiting to enter a classroom – or (and this one kills me) sitting by themselves at a lunch table in a loud and crowded cafeteria.

They are constantly surrounded by other students, so in the physical sense, they are not “alone,” but very little to no interaction is happening with other kids. And this isn’t to say that Gabriel and Noah always look sad when they’re alone – but they don’t necessarily look happy either – they are just kind of existing in that place and time; waiting for the break or lunch to be over so they can return to a more structured environment where they aren’t required to independently socialize 100% of the time.

On any given day, I’ll be heading somewhere, and I’ll see Noah sitting by himself. Then two minutes later, I’m over in MS and I run into Gabriel sitting by himself.

Sometimes I’m ok with it. Sometimes I fight back tears. Sometimes I find myself purposely avoiding the cafeteria during MS lunch, or the ES playground during recess – because on that day, I know I can’t handle seeing it.

It’s like constantly being pinched in the same place; the first time it hurts but isn’t too bad; the second time stings even more, and each time hurts more and more, until you eventually you start to form a bruise – which never seems to go away because you keep getting pinched in the same place.

Oh, how I wish I could form a callus and not a bruise. I wish I could harden my heart against it, or blow it off, but as most parents understand: this is impossible.

And sometimes if I have time and I see one of them alone, I’ll walk over to them and engage them in a quick conversation, just to try and provide them with a small break from their loneliness.

But, a valid question that as been posed to me before (by a couple of highly insightful people), is: “Are your boys really lonely – or, are you feeling lonely for them?”

Is this ALL the fault of Autism? Or, are they sitting by themselves by choice, because they need a break from the overwhelming nature of school itself? Or, is it a combination of the two?

Even though they are Autistic, perhaps they are naturally introverts, and I just can’t see it.

One of the hardest things of being a parent of Autistic children (and, of children with special needs in general) is to try and find the very thin line between where the child’s personality ends and the child’s disability begins – and both of which impact and affect each other – which just makes it even more maddening to try and decipher. And, (going deep here…) maybe they are so intertwined that there’s no line between them at all.

So I don’t know. Maybe they are enjoying the silence and solace. Taking a brain break. I would love to think so.

I also think I have such a hard time with seeing my own children be alone because when I was growing up, my social life was extremely high on my list of priorities. I was never comfortable sitting or being alone at school, and I personally felt very strongly that I needed to be included in things that were happening around me, and if I wasn’t – like if I wasn’t part of a nearby conversation, or if I wasn’t invited to a big party – it deeply bothered me.

So, now, having children that are very different than I was, are my old beliefs so deeply ingrained that I think – because I craved lots of friends and social attention at that age – that my own children must be the same in order to be happy? ­

I now know the answer to that question is unequivocally, “No.” Introverts can be just as happy as extroverts. To each her own. Different is beautiful. Etc, Etc.

So, since I know the logical answer, why do I still become so sad when I see my boys sitting by themselves?   Maybe I’m afraid that they want to be social and have friends (even one friend) but don’t know how to reach out to others.

And – just a quick shout out to the credit of our AISJ community – from what Daniel and I can tell – the boys are not bullied here. They are not outwardly treated badly by their peers, and they DO have kids reach out to them sometimes – so their isolation isn’t completely one-sided. And to be fair, Gabriel and Noah have both, for whatever reasons, been known to be out & out rude to other kids who have tried to talk to them or play with them. Noah, not sure why – but Gabriel has been bullied before in a couple of his former schools, and he has a memory like an elephant, so his motivation for keeping others at a distance might be self-protection. But overall, at AISJ, I don’t think we can really blame other kids for our boys’ isolation.

This is where my boys lack the social skills and confidence they need to be receptive to social opportunities – a clear-cut characteristic of Autism. So professionally, this is where I feel good about how our AISJ Learning Support department is hard at work in trying promote social skills training for all of our kiddos with special needs.

Personally, the Mommy side of me is trying to branch out and create more opportunities for our boys to interact with others.

Noah has had neighbor kids come over and invite him to play before, and he would go outside and not play with them but just “shake” (see blog post #2 for explanation) so understandably, the invites didn’t last. However, I’m hoping the “no shaking in public rule” is helping, because he was recently invited over to a boy’s house for an “official” playdate – the first in a very long time – and not by the parents but by one of his own classmates. (I cried when it happened.)

Gabriel, on the other hand, has yet to ever be invited to, or host, a sleepover, but we’re working on that.

We can’t expect the boys to branch out in isolation, so Daniel and I are learning that we need to do more to scaffold those opportunities.

And I haven’t mentioned much about Samuel because this doesn’t appear to be affecting him yet; his peers are still young enough to include him in play opportunities in spite of his differences. I wish this would last forever.

So, my bruise is there, but I think it’s partially self-inflicted. I know I need to stop projecting my idea of happiness onto them, but I can’t help but still be sad sometimes.

I believe the lessons here that I need to digest and internalize can be found in the heavily clichéd but deeply true Serenity Prayer by Reinhold Niebuhr:

God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.

Noah, Please shake quietly.

“Noah, please shake quietly.”

This is a phrase Daniel and I repeat anywhere between 5-20 times a day.

Out of our three boys, Noah tends to display the most “outward” signs of Autism.

When he was two years old, he found a short, plastic hose – part of a mattress air pump – maybe about three feet long – and he started carrying it around with him and shaking it. He would shake while walking, and also while sitting, and all the while staring at the end of the hose. This was something new for us, because Gabriel never did this.

In Special Education speak, this is called “stimming” or “perseverating.” Its purpose is to meet some sort of sensory need, and has been compared to tapping your fingers or bouncing your leg up & down when your legs are crossed; it’s akin to any kind of “normal” looking body twitching that people do to expend extra energy.

So we naturally started calling it “shaking” because that’s what it is, and it would sound ridiculous to say, “Noah, please perseverate quietly” all the time.

Over time, the shaking became more frequent and more intense. He started standing up and literally dancing around as he shook, while making high-pitched “jibberish” noises (noises that we’ve named “chirping”).

He also evolved from his beloved hose to hair ribbons, strings, and even long-stringy leaves off of trees. In fact, I can always tell when Noah has arrived at my office even before I enter, because he has left evidence all over the ground in front of my door. There are long, thin leaves everywhere – the rejects from the many leaves he has pulled off of nearby trees. (And I feel sorry for the nearby trees; they have all been stripped bare up until the height of Noah’s outstretched arm).

fullsizerender_1

He is always looking for something special in the leaves, and he’ll keep pulling them off trees and trying them out until he finds the “perfect” leaf that gives him the ultimate sensory satisfaction. What specific characteristics are necessary for the perfect leaf?  No clue. But I can’t wait for the day that he is able to verbally express himself well enough to explain it to me, because I am insanely curious.

And he does it when he’s bored, or when there’s nothing structured happening, or if there’s no iPad around. So if we allowed him to do so, I believe he would shake every waking minute. Whatever sensory need he is meeting, that need is profound.

And we’ve tried make light of it and have fun with it.  We even turned it into a little song that Noah and I still sometimes sing together (and think KC & the Sunshine Band when you read these lyrics..), “Shake shake shake…shake shake shake… shake my NOah, shake my NOah!”

What’s great is, it’s not like he can’t control it. He can. When we tell him to stop, he stops. Just not for long.

When Samuel was diagnosed with Autism, the PhD who worked with him asked us about Noah’s shaking, since Noah was there with us at the hospital. She seemed shocked that we allowed him to shake. She told us that we needed to immediately stop him whenever he started it, because it would open him up to bullying. This I completely agreed with, but what she meant was that he shouldn’t be allowed to do it at home – or at all, anywhere, anytime.

Now, I have an MSEd, not a PhD, so I didn’t argue with her, but as a Mom, this didn’t seem right. He is doing this for a reason, isn’t he?  What would it do to him if we forbid him to shake? (In retrospect, I wish I’d asked her that question – PhD or not.)

So we started to limit the shaking, in that we told him he wasn’t allowed to shake at school. But to compensate, he started pulling small strings from his socks and rolling them around in his fingers – which I have to say I do prefer more to the out & out shaking / chirping show, but over time, all of his school socks started falling apart. Then he went for strings from his shorts. Then his shirts. Then our curtains at home. Any string. A little annoying, but no big deal, but what was a big deal was the fact that this type of “shaking” was so discreet that he could (would) do it during class, and if he’s staring at and concentrating on a ball of string, chances are he’s not paying attention to the lesson – and yes, that’s a problem. So we asked his teachers to be on the lookout for this and not allow it during class time.

And we didn’t worry because he was still getting his fill of the full-on shaking at home.

But one weekend, about a year ago, I’d absolutely had it. As much as I love our little Noer (my nickname for him), the chirping was out of control. I’d listened to it for as long as I possibly could. One way I’d learned to adapt was to block it out mentally, but on this day, this coping mechanism was no longer working.  He was so loud and so annoying I could n-o-t take it anymore. (Not one of my finest moments coming up here.)

I absolutely blew up.  Before I knew what I was saying, the words were out of my mouth. I shouted, “Noah, STOP! STOP! STOP SHAKING!”

😦

Anyone who knows Noah knows that he is very, very (I mean v-e-r-y) sensitive, and so of course he stopped in his tracks – stunned – and the saddest, most heart wrenching sobs followed. And he ran to me and nuzzled up to me and between the sniffs and gasps, he repeated, “Mommy, I’m sorry. I’m sorry, Mommy.” Etc.

And I immediately realized what I had done, and I was so sad, and so ashamed, and I started crying too – holding him and petting him and telling him, “I’m sorry too, Noah, I’m sorry, it’s OK, it’s OK.” I reminded myself that he’s not doing this on purpose. He can’t help it. He needs it. But I felt at that moment (OH so selfish moment) that I just couldn’t handle it anymore – and so I remembered the PhD’s words, and I thought I’d give her advice a go.  Maybe she was right; maybe I’ve been overestimating his need to shake.

So I quietly said, “Noah, you need to stop shaking. OK? NO more shaking from now on. Do you understand?”

And at that moment, he was so ready to please me and make me happy again that he immediately agreed and (still sobbing) uttered, “Ok, Mommy, no shaking, Ok Mommy, make Mommy happy, Ok?” I said, “Ok, thank you Noah.” And that was that.

For the next few days, he stuck to his word. He sat on the couch while we watched movies, played games on his iPad, and played with some toys. He seemed “normal!” But he didn’t seem himself, and each day after he seemed a little bit worse – a little more depressed. Daniel and I both noticed this, but I was so proud of him for being so strong (and I was so enjoying our newfound silence) that I played it off as probably something else – maybe something at school wasn’t going well, and he was sure to bounce back soon. Daniel wasn’t so sure.

Then a couple of nights later, while asleep, Noah wet his bed. Which never happens.

Daniel is often more insightful than I am, and he called it. He put two and two together and helped me realize that this was getting bad.

Noah was slowly turning inward.

It’s like his brain and body were starving. He was fighting a primal urge and going through stress (possibly even pain) that we probably can’t imagine – bravely resisting what his body/mind desperately needed – in order to make Mommy happy.

He is so brave, and I am such a bitch.

I went and found his favorite “string” – part of an old Halloween costume that I had hidden away in a drawer – and went to him and handed it to him. I gently told him, “Noah, I want you to shake.”

The look he gave me was a mix of disbelief, happiness, and relief. But he was cautious, like he didn’t believe me. He confirmed, “Shake?!” So I reassured him, “Yes, Noah, shake! It’s OK. Please shake! Make mommy happy! But Noah, do you think you could shake quietly?”

Noah very happily replied, “Yes Mommy! I’ll shake quietly!” And he started to do his dance, holding his ear with one hand, leaning slightly over at the waist, feet running in place, and shaking the fire out of that string.   And he was back. My happy Noer was back. He still chirped a little, but it was so quiet it sounded like a mouse squeaking, and I can certainly live with the mouse.

At that moment I was eternally grateful for that string.   That string was nourishing my baby’s body and mind, and bringing him back to life.

So now, Noah is allowed to shake in my office, his Daddy’s classroom, and at home, but not out in public. The world isn’t ready for that yet.  And he still needs constant reminders to “shake quietly” at home, but that’s OK.  We’ve adapted.  If he needs to chirp, he is able to go shake in another room – and we’ve got a surplus of earphones. 🙂  The point is, he’s getting what his mind and body need, and that’s all that matters.

fullsizerender