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?”

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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?  

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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?

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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.

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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.

 

No Quick Fixes

As any parent knows, whenever something is wrong with your child, you want to help them; you want to “fix” the problem.  If they are sick, you rush to a computer and Google the symptoms, or call a friend for advice, or take them to the doctor.

You work the problem and attempt to solve it ASAP.

Imagine this feeling multiplied by 1000 when you find out your child has Autism.  

You want to help him; you want to “fix” him, but you don’t know how. You haven’t yet comprehended that there is no quick “fix” to Autism because you don’t know enough about it.  In fact, you don’t know anything about Autism, and that just makes it worse.

Through my Special Education studies, four commonalities of special-needs’ parents reactions to their children’s diagnoses are as follows:  

1. Special needs parents usually have an overwhelming desire to “fix” their children.

2. Special needs parents usually have an overwhelming desire to “fix” their children NOW.

Consequently,

3. Special needs parents very often dive into popular “fad” treatments for their children, which offer a “quick fix,” vs. opting for more valid and reliable, evidence-based interventions.

4. These “quick fixes” can be harmful if not approached with caution…..

I am 100% guilty of every single one of these, and here’s how.

In 2007, Gabriel was three years old and we had just learned he had Autism.  At that time, I was an Elementary teacher but with zero special education training.  We were also living in Abu Dhabi, and had NOwhere official to turn for help with him.  Our school (a national Emirati school) had no special education resources or knowledge, and we had a local “speech therapist” tell us that Gabriel wasn’t speaking because he was watching too much TV.  (SMH)

So, frantic and obviously on my own, I did what I believe most parents would do when they learn that their child has a disability – I googled it.  I desperately wanted to help him, and I wanted something that would help him not now, but yesterday.  

But rather than being patient, thorough, and conducting solid research on evidence-based practices surrounding Autism, I googled “Autism,” and one of the first things that came up in the search was Jenny McCarthy’s new book about her son with Autism.  

(Yeah, Jenny McCarthy, the former Playboy Bunny and host of the MTV show: Singled Out).

The summary of her book promised a quick fix to how she essentially “cured” her son with Autism.  Sweet!  She’s a famous actress.  She MUST know exactly what she’s talking about. I’ll follow her lead and have Gabriel CURED in a month or less!

(PS – There is no cure for Autism.)

I immediately bought her audio book and listened to it in one afternoon.

Turned out, her miracle cure was placing her son on a gluten-free/casein-free (GFCF) diet.

She said that when she eliminated these things from her son’s diet, his speech drastically improved, his shaking (aka – stimming) greatly decreased, and he became more coherent and generally more “normal.”  

In her defense, she did make the valid point that not all children might react the same as Evan (her son) did, and provided a full disclaimer that she wasn’t a doctor and was speaking from purely personal experience as a mom.  

But I didn’t hear any of that.

All I heard was the word, “normal,” and a seemingly simple way to achieve it.

I finished the book, then promptly announced to Daniel that we were starting Gabriel on a GFCF diet today.

Now.  Most children with Autism are extremely picky eaters – and Gabriel was NO exception.

Much of this has to do with their senses.  Autism can greatly enhance a person’s sensory perception; which is why a semi-loud sound to a neurotypical person can sound like an atomic bomb to someone with Autism.

Feeling the crunch of a chip between an Autistic person’s teeth may, to them, be the equivalent of someone scratching their fingernails down a chalkboard.

So things like food smells, temperatures, and textures are HUGE factors in determining whether or not a food is appealing to a person with Autism – and because of this, their food aversions may not necessarily exist merely by personal choice or preference.

And the opposite holds true for the foods they like: when they find foods that mesh well with their sensory needs, they can seem addicted to them.

So with this in mind, the following were pretty much the only foods that Gabriel would eat at that time:  

  • Pancakes
  • Oatmeal
  • Cereal with milk
  • Mac & Cheese
  • Cheeseburgers
  • Chocolate milk
  • CHOCOLATE ICE CREAM (addiction alert!)  
    • He would’ve eaten nothing else if we’d allowed it….

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Yep, so EVERY SINGLE ONE of the above food items either had gluten and/or casein in them.  So in order to follow this diet, we were going to have to eliminate ALL of his favorite foods; pretty much everything he was willing to eat.

I foolishly figured that if he got hungry enough, he would eat what we gave him, and it would be an adjustment for him, but it would be worth it because he might be “cured” of his Autism.  

Another problem was, we didn’t have a lot of organic food options where we could try and substitute normal pancakes for, say, gluten-free pancakes.  Whole Foods, Trader Joe’s and iherb.com did not exist in the Middle East back then.  

So there was NO planning, other than my looking up foods with gluten and casein, writing them all down on a list, placing the list on the refrigerator, and proudly proclaiming all of those foods off limits.

We started offering him foods such as rice, beans, potatoes, eggs, spinach, broccoli, and all the fruits we could find.  

Super healthy!  He’ll love it!  We’re awesome parents! 🙂 🙂 🙂

Um, nope.  

He completely refused to eat ANYTHING we made for him – boiled, sauteed, blended, hot, cold, frozen, salty, crunchy, spicy….. he WOULD NOT EAT, and any tiny bites that we managed to persuade him to swallow, he almost always gagged.  He very begrudgingly ate some fruit, but essentially, he went on a hunger strike.  

The harder we tried, the more he refused, and for a few days, our happy little home became a war zone.

About 5 days into it, we realized it wasn’t going to work.  Not only were we making him (and ourselves) miserable by trying to force non-preferred foods, he was losing weight fast.  

I still desperately wanted to “cure” him (or to at least see if Jenny’s miracle diet would work), but this was having the opposite effect – his attitude and behavior were getting worse.

It became crystal clear what the priority was here – first and foremost – to ensure that he remained physically healthy, and preferably happy.  

So, we decided to stop, regroup, and reintroduce foods we knew he would eat.  

Daniel made him a pancake, and he inhaled it.  Then he fixed him another one and he inhaled IT.   Etc, Etc, Etc.  It hurt me to watch it.  He was starving…  😦  

Stupid, stupid, STUPID!    

I was so incredibly angry with myself!  

WHAT was I thinking?!  

I had just officially “starved” the thing most precious to me on this planet; the one thing I wanted more than anything to nurture, and care for, and help: my little boy.

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So, after I finished screaming at myself (figuratively, not literally), I calmed down, and Daniel and I tried to logically assess what had just happened…

While the diet idea itself wasn’t necessarily foolish, the way we implemented it WAS.

It was foolish because neither did I properly research, nor plan it.  I should have done both, and then slowly and methodically attempted to introduce / substitute new foods into his diet – but I was SO desperate to find a cure, a “fix,” (and preferably a QUICK fix) that I just jumped in feet first and took both Gabriel and Daniel with me.  

I have to say though, as openly willing as I am to berate myself and call myself a fool (and yes, this was foolish, to be sure) – if I remove my Mommy hat and put on my Special Educator hat, things like this are common and understandable – and that is exactly what I would say to any special-needs parent who may have tried the same thing.  

Special needs parents may tend to “freak out” a little (or a lot) – especially after an initial diagnosis – and I wholeheartedly believe this is normal.  It’s traumatic – it rocks you to your core – and no one fully understands it unless they go through it.  

And, what gives me perspective is how afraid others seem to be of it happening to them.  I’ve had people who are pregnant with their first child say to me, “I just hope my child doesn’t have any disabilities.  I don’t know how I’d handle it.”  

Well, let me tell you……

I’m always shocked when people think it’s OK to say that kind of thing to me.  HOW am I supposed to respond to that?

However, I understand why they feel that way, and I can’t blame them.  There is absolutely nothing wrong with feeling that way, but I do admit that it cuts to the core a little bit.  I have not one, but three of those types of children that you’re hoping you won’t have.

I suppose I would say, “When you love your child(ren), trust me, you learn how to handle it.”

So anyways, did I make an impulsive move with the “quick fix” diet?  

YES.

But I’ll say this – I’ll never apologize for trying to help my child – and I am grateful for this experience, as it provided me with more wisdom, and now I know to thoroughly research and plan interventions before attempting them.

So, a quick final disclaimer so no one feels compelled to call Child Protection Services on us. 🙂

NO permanent damage appears to have been done to Gabriel.  He is now taller than I am, has a shoe size bigger than his father’s, and is STILL a picky eater – but when he likes something, he eats like a horse.  He is incredibly healthy.  

His little brothers are picky eaters as well, but we fix them foods they like (yes, with Gluten/Casein), and supplement whatever nutrients they lack by feeding them spinach smoothies, filled with fruits, yogurt, chia seeds, flax seed, quinoa, wheatgrass, and plant-based protein powder.  

(They look disgusting, but don’t knock’em till you try ’em – they’re actually really delicious if made properly).

And no, the boys don’t necessarily like them, but we started the boys on them young, so they’re used to them.

Not a “quick fix” to be sure, and that’s OK.  I no longer need or seek out quick fixes.  I need evidence-based interventions, with long-lasting health benefits.

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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.

“Please God, don’t let him think his brain is sick.”

For the record, this is my first blog post, and I’m scared to death.  I grew up being a completely open book (often engaging in embarrassingly TMI conversations & behavior), and then, was burned enough times to turn inward and I became quite introverted with my thoughts – confiding only in Daniel.  

And now, for some reason, I feel the time is right to open back up a little and start sharing some thoughts and feelings about being an Autism mom of 3 with others.  Anyways, my wish is for this blog to end up serving a greater purpose than a personal therapeutic outlet.  I hope it helps others gain insight into what it’s like to be a special needs parent, which I hope will encourage empathy (not sympathy, mind you….) and awareness for those with disabilities and for those who love and care for them. 

This post is about the day I told Gabriel he had Autism.

Gabriel is 12 now, and has been asking pretty insightful, self-examining questions for awhile (i.e. “Mommy, why do I have a shadow teacher?”).  Daniel and I have tried to be honest without going too deep, and have given him answers such as “You just need a little more help with school, Gabriel.”

However, as a very strong advocate for children being self-aware of their own learning needs so that they can self-advocate, I started feeling like a hypocrite and realized that he’s becoming mature enough to know the truth.  So I needed to tell him he had Autism – I just didn’t know how.  All my mommy training and educational training – every ounce of knowledge I have – would evaporate from my brain when I would try to come up with a plan to tell him.   I became an expert at task avoidance, and just when I’d get up the courage to have “the talk,” I’d find other tasks that were screaming to be done, such as organizing my sock drawer.

I just didn’t want him to feel bad about himself afterwards.  Whenever I talk about really horrible people (i.e. Adolf Hitler) with Gabriel, the metaphor I always use is that his “brain was sick,” and the LAST thing in the world that I wanted was for Gabriel to think was that his own brain was “sick.”

So when I told him, I didn’t have a plan, but the moment felt right.  I’m a teacher, and happened upon a teachable moment.  I’d liked for Daniel to have been there, but for some reason, Gabriel has an easier time opening up to me (and females in general), and again, the moment felt right.  I knew Daniel trusted me with things like this, so this was one of those, “You go on honey, I got this” moments that married couples have with each other.

Gabriel loves to ask me questions over and over again (attention-seeking behavior, of course), and I’ve tried to, repeatedly, politely impress upon him that asking the same question to which he already knows the answer is not necessary.

So as per usual, one day this past August, he came up and asked me a question he’s asked probably 25+ times: “Mommy, what’s your favorite Seven Wonders of the World structure?”   I answered, “The Taj Mahal.”  (And for the record, I don’t really have one favorite structure, but I just chose the Taj Mahal since that’s where Daniel proposed to me. 🙂

But, I used this opportunity to follow up and ask him, “Gabriel, do you know why you sometimes repeat your questions?” He sat there a second, thought about it, shook his head and said, “I don’t know.”

So I said, “Well, some people have something inside their brains that makes them want to repeat things.  It’s not a bad something, but it’s a difference.  A brain difference.   And lots of people have this difference. You know Dan Aykroyd? He has this brain difference too.” (AND, I’m proud to say that THIS part I planned, as Gabriel LOVES this guy – he’s a HUGE 80’s Ghostbusters fan – so I’d hoped to capitalize on his positive feelings for Mr. Aykroyd to soften the information delivery, so to speak.)

I continued, “This brain difference also sometimes causes people to have to work really hard to learn to talk, kind of like how Samuel and Noah are both learning to talk, but it’s difficult for them. This brain difference also sometimes causes people to shake, like Noah does.” (I’m referring now to the physical stemming in which Noah often engages – shaking a string in front of his face – so we call it “shaking” with the boys).

“This brain difference is called Autism. Noah and Samuel both have this difference.”

And before I even finished that last sentence, he already had the question out of his mouth: “Do I have Autism too?”

His eye contact with me is often sporadic – but at this moment, his eyes were deadlocked with mine.  I felt like he was looking through my eyes and into my soul.  It was a look I’d never seen before.

I returned the look with all the love I could possibly project through my eyes, and I said, “Yes.”

He didn’t move. He seemed to sit there and study my face. Time felt like it was standing still. So I just kept talking.

“And it’s totally OK, Gabriel.  It’s not a bad thing.  It doesn’t change who you are, but it’s something you need to know so that we can think about it, and talk about it, and we can work on how to help you deal with it when you feel the urge to repeat things.”

He sat there and listened quietly.  Then we both went silent for a second while I held my breath and waited for him to respond.

Then he quietly asked, “So, Dan Aykroyd is autism too?”  I relaxed a bit and said, “Yes, and look at him!  Look at how cool he is!  Look at what he’s done.  He’s a world-famous actor! You can do anything you want to do Gabriel, and so can your little brothers.  You’re not alone.  We’re all going to work together to help you and your brothers learn about Autism. Daddy and I are going to be right here to help you.”

He sat there another second and then, visibly, relaxed a little physically.  He seemed satisfied.  He seemed OK.  He slowly nodded his head and said, “OK,” grabbed his iPad, and started playing a game.

So the conversation ended.  And he DIDN’T ask if his brain was sick.

I got up, walked out of the room, took one of the deepest breaths of relief in my life, and whispered, “Thank you, God.”