For Noah, On your 11th Birthday Eve

My precious Noah,

Tonight as I watch you sleep (a favorite pastime of mine…  I do love watching my boys sleep….), I find myself remembering the afternoon you were born, 11 years ago tomorrow.

It was one of the best afternoons of my life, followed by one of (if not THE) scariest nights of my life.

Before we knew about your peanut allergy, or your Autism, there was almost something else – a complication that could have resulted in you having a major surgery just days after you were born.

Here’s your story.

Your birth was to be a planned C-section (because you were going to be a BIG baby, already weighing 9 lbs @ 38 weeks!), so Daddy & I were able to have a relaxing morning before heading to the hospital that day.  We dropped your big brother off at his preschool (he was only 4 years old then!) and then strolled over to Al Noor Hospital in Abu Dhabi.  We even had time to snap a quick, last pic of you inside my tummy!

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Everything went well, and you were born at 3:40 PM (which is the EXACT same minute that Gabriel was born, by the way….) and I remember hearing you cry for the first time.  I was so happy to hear your voice that I started crying, to the point where I was shaking, and I remember the Anesthesiologist looking at me shocked & wide-eyed for a second (like he thought I was convulsing), until he realized I was just being super emotional.

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They brought you to my hospital room not long after, and I finally got to hold you and snuggle for awhile.  Daddy and Gabriel came to see you, we took some new family pictures, and then your brother and Daddy went home and the nurses took you away to the nursery.

A few hours went by, and I missed you, so I rang the nurses and asked them to bring you to me – and they said they would, but then they didn’t.

I tried to be patient, but you still didn’t come.  I started ringing the nurses almost every 10 minutes to ask where you were, and each time they would come in and say you were on your way, and then they would disappear and nothing would happen.

After a couple of hours of this, I was extremely (and visibly) angry and upset with them, and one of them finally said, “The doctor is coming back to the hospital and he will talk to you.”

By this time, it was about 2:00 AM, and for the doctor to be coming BACK to the hospital?  Meaning he was coming back because of, you?

What the HELL was happening?!?!  (er, or, What the heck?!?  –You won’t read this until you’re older anyways… )

I started ringing the nurses more and asking them what was wrong, and they wouldn’t tell me anything, but things weren’t adding up.  When I was holding you earlier, you were sleeping, breathing just fine (as far as I could tell), your color was good, and I didn’t detect that anything at ALL was wrong with you.

And now, I was all alone in this hospital room and I desperately wanted to call your Daddy, but – I didn’t want to wake him up in the middle of the night and scare him until I had something to tell him other than the feeling that all nurses at this hospital were mean, and incompetent, and were definitely hiding something from me…..

So I waited, and waited.  I’m pretty sure I started crying, and the saddest feeling of dread was washing over me.  And I was getting SO angry and frustrated.

WHY wouldn’t anyone tell me what was going on?!?!

After what truly seemed like an eternity, the doctor walked in.  He was wearing normal clothes, like he had just come from home, and he looked tired like he had just woken up.  He told me that you had a very swollen stomach (which I didn’t see because you were wrapped up in a blanket when I was holding you), but also that you had been throwing up bile all evening and you weren’t passing your meconium (your first baby poop).

So they did an x-ray on you, and when he showed me the screen, it showed your sweet, tiny little frame, and maybe 40-50 little air bubbles stacked on top of each other in your stomach.  Basically, you were blocked up and nothing (no milk) was getting through your little body.

The doctor was afraid that you might have a condition called Hirschsprung’s Disease; meaning, a part of your colon would’ve been diseased, and that might be what was preventing things from moving smoothly through your body.  It wasn’t life threatening, yet, but it could turn so very quickly if you weren’t able to, well, poop.  If you would poop, this would finally let all the air bubbles out of your stomach, and then you could drink some milk without throwing it up.

It was like a bad dream.  You may have some disease I’d never heard of before, and you might have to have surgery?!  I was so very sad, but I remember thinking that at least there was something we could do, and that it truly could’ve been worse.  The doctor also said that he wasn’t ready to call the surgeon just yet, because “all surgeons usually want to cut right away,” and he wanted to give you a little more time.

Over the next two days, you stayed in the NICU, in a little incubator, with IVs in your hand and tubes draped over your precious little body.  I came to see you and held you, and admired how beautiful you were.  I wanted nothing more on Earth than for you to be OK and to take you home with us.

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And then came the time for me to leave the hospital, but we couldn’t take you home with us.  You had to stay, and we had to go home, and that wasn’t right.  You were supposed to come home with us…  We had your crib ready.  We had plastered your room with Winnie the Pooh decorations.  We even had a mile-high stack of diapers awaiting you….  There was nothing but love, comfort, cuddles and kisses waiting for you at home – but we couldn’t take you with us.  Your little tummy was still bloated and filled with bubbles, and so you had to stay at the hospital until you were able to pass everything through.

I cried when we left the hospital, and I cried when we got home.  It was one of the saddest experiences of my life.  But some good news was that the doctor said you appeared to be doing better, but they still wanted to monitor you, and he would call us if you threw up again.  That night, I prayed so hard for the phone to remain silent – for it NOT to ring, and God answered my prayer.  It didn’t ring.

The next morning, your Daddy and I went to see you at the hospital, not knowing if we were going to be able to bring you home – but when we saw your doctor and he saw us, he started smiling.  He happily told us that you had your first “poop,” and the bubbles in your tummy were gone, and that we could take you home.   I was so happy I started crying and asked the doctor if I could give him a hug and he said, “Yes,” so I practically jumped on him and gave him a HUGE hug and then skipped through the maternity ward to where they were keeping you.  We gently wrapped you up in your brand new blue baby blanket (the one with the baseballs and footballs that your Grandma Karen sent you) and we brought you home.

I spent that afternoon feeding you, kissing you, snuggling with you, taking endless amounts of pictures of you, and watching you sleep (just as I am right now).

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And here you are, 11 years later.  You have grown into such a sweet little boy with the purest heart.  Daddy and I call you our family’s “Border Collie,” which means that you are always checking on everyone to make sure they are OK.  You are the first one to let us know if someone isn’t OK – like if someone is hurt, or sad, and you’re always asking if everything is all right.  You love Doritos and Chocolate Milk.  You love your iPad. And you are really GOOD at math! 🙂

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You have blessed our lives in countless ways, my love.  Thank you for being you.  Daddy and I are so lucky to have you as our son.

Happy 11th Birthday, Noah Christian.

“Can Surgery Remove my Autism?”

Damn, kid.

Gabriel never fails to ask the really tough questions.

To provide context, he had a sore throat not too long ago, and as it didn’t seem to be going away anytime soon, we went to the doctor.

It was a new doctor, so when we went in, they asked him the standard “new patient” questions, like “Do you have any allergies, what medications are you on, etc.”

So we went through all that, and then they asked if there was any further medical information they needed to know.

I whispered to Gabriel, “Do you want to tell them about the Autism?”

This seemed to irritate him a little, but he replied to them (in a slightly exasperated tone), “YES, I have Autism.

To this, the nurse didn’t bat an eye but just smiled and said, “OK, thank you for telling us.”

(I was so grateful to her for that – the professionalism and automaticity with which she responded to him).

Then he and I went back out to the waiting room and he went quiet.  I asked him if he was OK and he quietly said, “Yes,” but I could tell he wasn’t.  I started to second-guess myself and think that maybe I shouldn’t have mentioned the Autism – but in hindsight, I’m glad I did. Medically speaking, it’s necessary for them to know; even though he’s 14, he still has a considerable speech delay that could potentially impair his ability to express himself in the future – say if he’s hurt, or on medication, but can’t tell them exactly what or why.  At least they would know.

I also think I wanted to try and normalize the Autism…  although I’m not sure what I mean by this.  I guess really normalizing it would’ve been to NOT mention it, but I do feel very strongly that the Autism is something he needs to own.  I’ve seen enough student/parent denial in my time as an educator to know that denying and/or ignoring a disability does NO good.  Trying to pretend it doesn’t exist is SO harmful and counterproductive.  Much better to hit it head on, own it, figure out how best to deal with it, and move on.

Anyways, we sat there a few minutes quiet, and then he asked, “Mom, can I have a surgery to remove the Autism from my brain?”

My heart dropped into my stomach and I immediately started praying for the right things to say.

No, honey, the Autism isn’t something that can be removed.  It’s part of you and your personality.  It’s part of what makes you the wonderful person that you are.”

He replied, “But I want to be intelligent.  And I don’t want to be different.”

And here’s where I was immediately grateful for my Special Education background, because I’ve had this conversation countless times with students in Learning Support – as for our students, it’s VERY important that we constantly convey the message that there are MANY kinds of intelligent.

Sweetheart, do you know what “intelligent” means?  It means that you are capable of doing SO many different things!”

And I rattled for at least two straight minutes…

“You can take care of yourself and help take care of our family, like always doing the dishes for our family, or boiling chicken for yourself, or fixing your little brothers a bowl of cereal!  You can keep yourself safe like remembering the house keys and always making sure our doors are locked; you can read music and play the trumpet, you can remember things that happened when you were three years old and tell stories about all places you’ve been, you can find absolutely anything you want to on the Internet faster than Daddy or I can (and that is 100% true!). LOOK at everything you can do!”

I actually said a lot more than this, but you get the point…

He seemed to ease up and acted like he felt better after my rant (or, maybe he just wanted me to shut up… 😉

But then, he gave me a shy smile and said, “Yes, but I can’t drive yet…

Oh Dear God.  So it begins…..👀

Anyways, that particular conversation ended, and I can’t necessarily claim success, but he hasn’t mentioned this again, or asked me anything remotely like this since (this happened a few weeks ago), and I do feel like he would keep asking if it were bugging him, so I’m hoping that what I said made him feel better about himself.

But the comments still come.

Random comments every so often about how he doesn’t like to be “different.”  He’s also starting to talk about girlfriends. “Mom, when will I have a girlfriend?”

And this one breaks my heart – as I’ve seen / heard this comment from some of my older students with Autism as well.

I tell him the only thing I know to say, “Gabriel, you’re so young, please don’t worry about this.  It’ll happen someday; you’ll meet someone, just like Daddy and I met each other.”

I pray I’m right; I hope he will find someone, with or without Autism, who will love him and accept him for who he is.

—His growing up is honestly tough to handle, and it’s not getting any easier.

Daniel & I have a dear friend who is a Pediatrician in Wisconsin, and he was the one who detected Gabriel’s Autism before anyone else.  He told us, way back when Gabriel was three, that the Autism would really rear its “ugly head” when Gabriel hit his teenage years.

Well, we’re here, and I’m honestly scared..  He’s so sensitive and self-conscious.  I hope we can keep finding the “right” or “semi-right” things to say or do when Gabriel hits us with these tough questions…

And to end on a lighter note (but still along the same lines), Gabriel and I were recently looking a picture of me when I was pregnant with him, and he asked me, “Mom, how did I get IN there?”

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Me screaming inside: !@#$%!”

**BIG BREATH**

“Um, well, (imagine me stuttering and stumbling over my words….) I had an egg inside of me, and, um… you grew from the egg.”

Gabriel: “So, HOW did the egg get inside of you?  Did you EAT the egg?

…….

OMG…  I can’t imagine how many shades of red my face turned while I was trying not to scream with laughter…!

My mind sort of went blank at this point, but I think I said something to the effect of, “No, sweetheart, I already had the egg inside of me.”  And I stopped right there and immediately changed the subject before he could ask me about Daddy’s role in the egg fertilizing process.

Um, yeah.  He’s at the age of questions. Tough questions.  Some questions that I would never EVER anticipate (although, to be fair, I should’ve anticipated the pregnancy question at some point….).

Such is the parenting life in general, I guess, but throw Autism into the mix and it literally turns into a Forrest Gump situation: “It’s like a box of chocolates, you never know WHAT you’re going to get.”

So please pray for me to be able to think on my feet quickly, restrain my laughter when necessary, and no matter how much a question throws me, enable me to find the words to help him realize that he is exactly the way God intended him to be, Autism and all.

Six Years Away…

2023.

This year may seem a long time away, but it’s not – not if you are a parent of a child with Autism who is going to graduate from High School in this year.

It’s ONLY six years away.

At AISJ, students have their graduation year as part of their e-mail address, so I’ve been looking at Gabriel’s e-mail (Dotterweich.G.23@aisj.edu.sa) ever since he was in 1st grade.

Usually when I would see it, I would smile and shake my head and think,

2023 is soooo far away.”

But it’s not. And it never really hit me until this year.

I think what’s different now is the fact that two of my students (who I’ve worked with in Learning Support since I arrived in Jeddah in 2011) are graduating this June.

I call them “my babies,” because they were just entering 6th grade when I met them; and they were both so short, and so tiny, and fresh out of Elementary School, and sooooo very precious and innocent.

(They are STILL precious and innocent, don’t get me wrong! 😉

But, NOW they both tower over me in height, and are wearing Senior jackets, and…. yeah.  They’re full-on men now, not the “babies” I inherited when I arrived.  I’ve told them both that I am going to lose it at their graduation this year (lose it meaning “cry, hard, probably uncontrollably”), because I’ve never known AISJ without them, and I truly consider them family.

Anyways, this year, THE main topic of conversation with them has been what they are going to do next year when they leave.

And I can never have this conversation without ending up thinking about my own boys – especially Gabriel – since he is the oldest and closest to graduation.

What will Gabriel DO when he graduates?

  • Where is he going to live?
  • HOW is going to live?
  • Will he even be independent enough to live on his own?

A four-year university will probably not be an option, at least not at first.

This is pretty much a “given,” since he is on a modified curriculum – meaning he attends 7th grade classes but we simplify the content and allow him to access it on his reading/writing/comprehension level, which is around 4th/5th grade.

It would take several more years of high school beyond his Senior year for him to be able to access Freshman university level content – but I highly doubt he would be too excited about extending high school for a few more years.

I have to say though, that I am deeply encouraged by how many US and European universities are creating programs for students with Autism, so who knows…?!

But, even he if was to enroll in some type of university program, would he be able to survive on his own?

  • Drive?
  • Pay bills?
  • Cook food (or even buy food?)
  • Use an ATM?
  • Not burn the house down?

My optimistic prediction: Yes, in six years, he will be able to live independently.

The thing about Gabriel is, he can be incredibly responsible and independent when he wants to be (meaning, if there’s something in it for him), meaning, a reward.

It’s a-MAZing how quickly he will move, or how hard he will work on a non-preferred task – IF he knows he’s going to get something he wants in return.

So, I created a behavior system for him (which I call a “Responsibility Chart, see below”) that gives him points for doing things he should do, and when he collects enough points, he can “spend” them on things like Xbox games, renting or buying movies on iTunes, etc.  This is essentially an allowance system, without handing over actual money.

It is Gabriel’s responsibility to log on every day and document his points for the tasks he has completed.

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Many of these tasks are super simple and deal with hygiene, and I have to say that for the most part, he is pretty good about taking care of his hygiene needs.

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BUT, then he also has tasks such as homework, chores, trumpet practice, etc., – not as preferred…

So, to incentivize the more important things (or the tasks which take longer or take more effort (such as reading for 20 minutes every night), he receives more points.

And, as all parents know, it’s necessary for children to pay consequences for poor choices in behavior, so it is also possible for him to become grounded and/or to lose points.

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AND, I realize there are people/parents who don’t believe in giving kids rewards.

Some people view rewards as “bribes,” and think that kids should be intrinsically motivated to do such things as brush their teeth, use deodorant, do their homework, etc…

  • You want to have clean teeth?  Brush ’em!
  • Want to smell nice?  Shower & deodorant, please….
  • Want to learn?  Do your own research!

Common sense?  Of course. To a 40-year-old, yes, but not necessarily to a 13-year-old (with or without Autism...)

13-year-olds would much rather play their XBox for 8 straight hours and smell like a locker room than waste 15 minutes of that precious time taking a shower.

To those who don’t believe in giving rewards, I say, if you think about it, there are very few things in life where people do not expect to be extrinsically rewarded in some sort of way, no matter their age.

I teach because I love it.  I am highly, intrinsically motivated to go to school every day and collaborate with my colleagues, in order to help improve the lives of our students.  HOWEVER, you better believe that I expect to be paid for what I do (as does every other teacher I’ve ever known).  Payment is my extrinsic reward.

So, of course, Gabriel’s points won’t last forever, and after awhile, I intend to make him work harder or longer for the points, until he becomes mostly intrinsically motivated to take a shower or do his homework (or at least, that’s the plan...).

And, beyond the points, I’m proud to say that Gabriel can already do many responsible and independent tasks on his own!

He can cook!  He boils his own chicken, washes his own grapes, blends his own chocolate milkshakes, washes dishes, helps his little brothers pour their bowls of cereal, rides the bus home alone with Noah on our early-release school days, has his own phone, carries house keys and lets himself into our house, etc., etc.

He’s scared, though.

Any time we talk about the future, you can see the fear in his eyes.  He’s even said some really insightful things like:

  • “I don’t know how to make money.”
  • “I don’t know how to pay for things.”
  • “I don’t know how to travel on airplanes by myself.”

And I appreciate his honesty, and admire him for it.

I always reassure him that we will teach him (and we ARE teaching him; more about that in a future blog post); but we make sure he knows that he will never be alone if he doesn’t want to be.  He will always be welcomed to stay and live with us, but I really don’t think he wants that.

His current obsession is to live in London, and we visited several Hard Rock Cafe restaurants this past summer in Asia (which he LOVED), so his current dream is to go be a waiter at the Hard Rock Cafe in London.

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*I can’t lie; I have slightly higher aspirations for him than a waiter – and I don’t think he understands how SOCIAL a waiter has to be in dealing with the general public… (this is coming from someone who waited on thousands of tables all throughout her HS and university career….)

I’m grateful I have six years to help him understand that.

But I’ll tell you what – I believe the very definition of happiness is being independent.

Free and able to do what you want; live where you want, live how you want.

So, my love, if you want to be a waiter in 2023, we have six years to make it happen.

Your Daddy and I will do everything in our power to help you gain the skills and knowledge you will need to succeed on your own, and to become the best damn waiter in London.

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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.

 

Travel and Autism

Gabriel turned 13 years old a couple of weeks ago, and we took him and his brothers on a “bucket list trip” to Cairo, Egypt to see the Pyramids and Sphinx – to mark his official entrance into manhood!

This trip necessitated a very short, two-hour flight between Jeddah & Cairo – and three days away from home.

And, our sweet little Noah was terrified.

In spite of our international lifestyle, including Noah being born in Abu Dhabi and our literally flying all over the world with him from birth on, Noah has been nervous on airplanes as early as he was old enough to know what was going on.

And truth be told, I share this fear.

I make it a point to sit next to Noah during our flights, because I know that during every take off, any turbulence, and every landing, his hand will be squeezing the fire out of mine, and his head will be firmly buried in my chest, with my arm tightly fastened securely around his body.

And I have to admit, this comforts me. Not only in the “I’m being the best Mommy EVER! sense,” but, in the fact that I need this physical comfort too.

And, personal note here: I’m mentally working on this fear of flying issue; it’s not fun and I want to be over it… But in the meantime, valium and wine (not necessarily in that order..) help tremendously.  😉

But back to Noah: what also hits him hard is the fact that he is an UBER picky eater, and he shuts down on flights. Won’t eat, won’t drink, etc.

He’s gotten better though; in past years, on 15-30 hour trans-Atlantic marathons (i.e. Tampa-Atlanta-Dubai-Jeddah), after we finally reached Jeddah, Noah was so sick and dehydrated that we had to take him to the ER and get him on a saline drip for a few hours.

PS – We don’t do this anymore; we definitely learned our lesson. Any time we take massive trips, we break them up and take daylong layovers to give the boys (and us) time to recoup.

Anyways, fear of flying is certainly not always synonymous with Autism, but I’ve no doubt his Autism contributes to his anxiety – along with the plane ride itself, the lack of familiar food, and especially the bigger, overall concept of the unknown.

Travelling, by definition, is an all-encompassing series of NEW experiences, and Autism doesn’t sit well with “NEW.”

Consequently, as Noah has gotten older, he has become a serious homebody.

Case in point: We arrived in Cairo, and the very next morning, he started crying and saying, “I want to go home.”

**BTW, this is new for us; Gabriel is perfectly fine on planes, loves going to new places, and when we’re gone, NEVER asks to come home…**

It’s also new in the fact that this is the first time Noah has displayed this heightened level of anxiety – probably because he is now old enough to know and understand what is coming; he knows if we say, “Noah, we’re leaving on an airplane in three days,” he comprehends it, internalizes it, and then obsesses on it.

So in the week leading up to the trip, Noah started vomiting in the mornings. Not because he was “ill” with a virus or infection, but because of anxiety.

And he vomited multiple times the morning of the flight, on the flight, and even the morning we went to the pyramids. We were literally standing at the foot of the Great Pyramid of Khufu, and I had Daniel, Gabriel and our kind tour guide making a human shield around us while Noah threw up into a plastic bag I was holding.

But then once he got it out of his system, he was fine.  We rode camels about 30 minutes afterwards, and a camel ride is NOT a smooth ride – were all thrown around, shaken up, etc. – and he was stellar.

He is such a little rockstar.  🙂

He even posed for this pic right after the finishing the camel ride, and while he was posing, said in the cutest voice, “I am STRONG!”

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Indeed you are, my little love.

So it’s the mornings, the uncertainty of what’s coming next, and the obsessive desire to be back in familiar surroundings.

We still saw what we wanted to see, but cut the morning short – and once we got back to the hotel and he had his iPad, he was fine. Except, still asking every hour or so, “Mommy, can we go home?”

What was very interesting was the night before we left, he actually became excited for the airplane.

Noah: “Mommy! Tomorrow, sleep, wake up, go to airplane, and go HOME!!!!” with a big, beautiful smile.

Me: “Yes, baby, tomorrow we go home.”

Noah: “Oh, THANK YOU MOMMY, thank you so much!!” followed by a kiss for Mommy, which Mommy always loves, of course.

What Mommy does NOT love is the fact that in one month, we are leaving again on another short trip (Oh wait, definitely, Mommy loves that fact! 🙂 but it’s the attached fact that Mommy doesn’t love – that Noah is probably going to go through this again, and this time it will be worse (i.e. 7-day, spring break trip to Greece and Cyprus: more flights, longer flights, and longer overall duration of trip).

However, this is where I am grateful for my Special Education training, as I will be more prepared this time with a picture-filled social story, detailing every step of the trip for Noah so that he knows, within reason, exactly what is coming:

And, thank God Noah has a hands-down, aMAZing Learning Support team who is going to work with us on getting him ready.  Collectively, we will be:

  • teaching him breathing / relaxation strategies
  • soliciting help from some of his little friends to make him videos of encouragement that he can watch while he’s away
  • tasking him with taking pictures and making a little picture book (or video blog, not sure which yet) to show his friends when we get back
  • role playing going on a trip with him; packing a bag, going to the airport, taking pictures of new sights, etc. to try and get him used to the idea of seeing new things, while still feeling safe and secure in a familiar environment
  • any other ideas are welcomed…!

And, because he pretty much refuses to eat anything but very familiar foods, Daniel and I are going to prepare and take a massive “familiar food” care package with us.

So…… This is the plan.  No idea if it will work, but I’m hopeful.  If you’re failing to plan, you’re planning to fail, right?

We will give it our best go to try and help him decrease his anxiety, while trying to heighten his enjoyment of the trip, and hopefully expanding his confidence if/when he overcomes this fear.

I just deeply hope that in time, same as with Gabriel, Noah will learn to look forward to and appreciate new experiences: including heading out there into the unknown to see the world.

One last thought.

(Classic soapbox moment ahead….)

There may be people reading this who don’t value travel the way Daniel and I do.  You may believe that we should move home to the US and cater to Noah’s wishes because of his Autism.

With all due respect, we completely disagree.

First of all, we can’t shelter Noah from change (even in the US), and it would be highly unhealthy to even attempt to do so.

Second, Noah is very stable here in Jeddah; we’ve been here six years, with no immediate plans to leave, and he has (I believe I mentioned this before) an absolutely amazing (over the top, freaking AMAZING) team of Learning Support professionals who love him as their own and take care of him at school. Personalized care I’m certain we would never get in the states.

Third, Daniel and I live where we do and the way we do because we believe there is too much beauty and diversity in the world to not go out and experience it to the greatest extent possible.

And we want our boys to see this world.  We want to give them the world.

We ask others to open their minds and include our boys in their lives, in spite of their disabilities, but it’s equally important for our boys to have open minds and be open to others’ differences, cultures, etc.

And for us, this ex-pat lifestyle is the most authentic way to show them how different, and beautiful, we all are.

Noah knows he’s loved.  No question there.  And if we truly believed we were hurting him or his brothers, we would adopt a different lifestyle.

But in our heart of hearts, as parents, we believe he will be just fine.  Even more than fine, hopefully.

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Mommy, Why did Jesus make me Autism?

Hardest question I’ve ever been asked….

About two months ago, during school, I happened to see Gabriel during one of his breaks.

He was sitting outside on some bleachers, deep in the middle of a group of boys.

This both shocked and excited me, because this was different!  He usually spends his breaks either sitting by himself on the bleachers, or just kind of wanders around by himself, killing time until the next class.   

So, as I looked closer, not only was he sitting amongst a group of boys, he was talking!  Like, in a highly animated way, as if he was telling a story.

This was A-MAZ-ing!  

I came even closer as I wanted to see exactly who he was talking to, so I could make mental notes of who the boys were who were being so nice to him and listening to whatever he had to say.

And then, my heart dropped from out of the clouds.

No one was looking at him or paying attention to him.  He was having a full-on, highly animated conversation – with himself.

This was new; I’d never seen him do this before.

And not only had I never seen him talk to himself before, I most certainly never saw him do this while sitting in the middle of a group of boys.

–Oh my sweet angel, WHAT are you doing?  Are you SO longing for a friend that you’ve created an imaginary friend?  Or, have you become so desperate for others’ attention that you’re now behaving in a manner which you believe will give you attention?  AND, you must no longer care if that attention is negative?–

I fought back tears, felt my stomach sink, and just sat there awhile and watched him.  He couldn’t see me (and I was very thankful for this) as I didn’t want him to catch me watching him while I was undoubtedly looking so heartbroken.  (I was watching from inside our Middle School teachers’ lounge – which has dark tinted windows that prevents students from seeing in.)

I carefully studied the boys sitting around him, waiting for a side look from one of them, or a comment, or any minuscule hint of bullying – which would have automatically launched me off that couch and outside to deal with it in a second – but, they all seemed to be so engrossed in their own conversations that they either didn’t notice him, OR, they were all doing an excellent job of ignoring him.

I watched for a few more painful minutes, and he finally seemed to settle down a little, and then thankfully, the bell rang and they all got up and dispersed to their classes.

I knew he had dodged a massive bullet, and I started to plan out what I was going to say to him that evening about it.

So that night, I sat him down and gently said,

Me: “Gabriel, I saw you today during one of your breaks, when you were sitting with a group of boys.  Do you remember that break?”

Gabriel: “Yes.”

Me: “It looked like you were talking to someone.  Who were you talking to?”

Gabriel: Silence

Me: “Can you tell me?”

Gabriel: Confused and afraid glance

Me: “Gabriel, were you talking to yourself?”

Gabriel: “Yes.”

Me: “Do you know why?”

Gabriel: “No.”

Me: “Gabriel, it’s OK to talk to yourself.  People do it all the time – but they do it when they’re by themselves, in private.  Like when you’re at home in your room.  But, when we’re around other people, like at school, if we have thoughts in our heads, we need to try and keep them in our heads and not let them come out of our mouths – unless we are talking to another person. “

Gabriel: Nods head, “Ok.”

*Long Pause*

Gabriel: “Mommy, maybe my Autism made me do it?”

Me: “You might be right, Gabriel, and that’s OK.  Remember we said that Autism is a brain difference?  This might be one of those differences, and again, that’s OK.  You can control this.  When you’re at home or by yourself, you can definitely talk aloud to yourself if it makes you feel better.  OK?

Gabriel: Silence, thinking.

Gabriel: “Mommy, why did Jesus make me Autism?”

Oh my God.

–I catch my breath and pray a three-second prayer for the right words–

Me: “Gabriel, Jesus loves you, and He made you in a very special way.  There’s no one in the entire world the same as you.  Jesus created you just the way you are, and He wants you to do wonderful things.

Your autism is what makes you, you.  Please remember it’s not a bad thing; it’s a difference.  And there are many ways that your Autism helps you.  You know how you can remember so many things?  So many details of all the places we’ve been and the things we’ve seen?  You know how you can remember so many of the world’s different currencies and how you know all of the different “Wonders of the World” structures and where they are?  How you can remember so many of the different flight times between all the places we’ve been?  

Your autism helps you remember all of these wonderful things, and it’s going to continue to help you learn as you get older.  What we have to do is use your autism for the good things, and control it when it wants you to do things that might actually be a little too different – like what happened today with talking to yourself.”

Long Pause

Me: “Do you understand what I’ve said?”

Gabriel: “Yes.”

Me: “Can you tell me what I just said?”  (which I have to do because any time I ask him if he understands something I’ve said, his default answer is always “Yes.”)

Gabriel: gives me a pretty good, abbreviated version, hitting the important points of how he’s special and he can remember  a lot of things, and how Jesus loves him.

I was relieved with his answer, but he still didn’t seem completely convinced.  At this point, he kept trying to leave the room, so we took a break from the conversation.

And I believe it worked, because I haven’t seen him talk to himself since.

But, in true autism fashion, Gabriel still tends to repeat questions – so I’ve had to re-answer the question, “Why did Jesus make me Autism?” probably 8-10 more times.

And every time, I try to remind him of the fact that Jesus loves him, he was created exactly the way Jesus intended, and that he can use his autism for good.

But the problem is (and I’ll never tell Gabriel/ Noah/Samuel this) that I’ve asked Jesus the same thing a million times.

Jesus, WHY did you make my children autism?

Because I hate autism.  With every fiber of my being.

I don’t want it around.  I want it out of our lives.  I don’t want to figure out how to use it for good – I just want it to disappear and stop clouding my children’s (and my students’) minds.  

And believe me, I want to believe everything I’ve said to Gabriel – that Jesus made him exactly how He intended.  But this is where I don’t understand Jesus’ reasoning.  

The negative effects resulting from autism have, by and large, outweighed the positive effects.  

So again, why????  Why our children?  And why us?

Anyways, this is my daily struggle – asking questions to which I’ll probably never know the answers.

So honestly, it’s here to stay, so why fight it, I guess?  

Just turn that fight into a fight for inclusion and acceptance, constantly try to help those with special needs improve their lives, and continuously search for new ways to use autism for the good.  

About all I can do.

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“).

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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:

 

 

 

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.