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.