Accepting Differences

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

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

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

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

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

(Yes, I was...)

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

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

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

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

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

And for the first time ever, this happened:

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

I wholeheartedly embraced his cute, crazy differences!

It was an a-MAZing, liberating feeling.  

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

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

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

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

Screen Shot 2017-06-02 at 10.16.52 PM

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

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

IMG_2160

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

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

And yep, this used to really bother me.  

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

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

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

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

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

Might as well soak it up.

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

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

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

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

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

IMG_3723

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

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

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

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

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

Seriously, shame on me.  😦

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

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

 

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.

Navigating the Perfect “Autism” Storm

Most people with Autism need a high level of structure and clear-cut routines.  

Familiar people, familiar places, they know what’s coming, no surprises, etc.

This makes them feel comfortable and secure, and in Autism research, there is overwhelming proof that people with Autism thrive more in every way when you place them in a very stable environment.

So sure – this is great in theory, but highly unrealistic.  

Life doesn’t work this way.

So, what do you do when you have a child with Autism who is about to go through a situation that is completely new, and potentially painful, in a strange place with strange people?

Namely, a dental surgery?

AND, couple this with the fact that Gabriel was just five years old, and had a serious receptive and expressive speech delay that allowed him to communicate like a two-year-old.

Meaning, yes, we could try and tell him what was about to happen and the reasons for it, but we wouldn’t have any guarantees that he would understand anything we were saying.  

There was no such ability to have the following conversation:

Mom: “Gabriel, you have some teeth that need to be fixed, so we’re going to take you to the hospital and they’ll put you under, they’ll fix your teeth, and then you’ll wake up and be a little groggy but you’ll be fine.”

Gabriel: “OK Mom, got it.  I’ll be fine.  Thanks.

In my dreams.

We had the makings of a perfect storm ahead of us, with the potential of a truly traumatic experience for our little boy.

While it was an outpatient procedure and he wouldn’t have to spend the night in the hospital, he was still going to have to go through a million, different tiny procedures (each of which would be difficult for him to do, and any number of these could potentially cause a meltdown):

  • Smelling the air in the hospital
    • He and many with Autism are super sensitive to any different smells
  • Waiting, and waiting, and waiting….
    • Tough for any kid but this was certain to just heighten the anxiety
    • (I had the iPad fully charged and ready to go…)
  • Putting on a surgical gown
    • He might not like the texture or feel of the gown against his skin
  • Having blood pressure taken
    • I’m sure he’ll be thinking, “Why is this thing squeezing my arm and WHY is Mom allowing it?!”
  • Mask on his face to put him under with anesthesia
    • Again, scary for any kid, but a mask on his face?  He’ll probably freak out and try to rip it off.
      • This is the same kid who screams bloody murder if someone tries to cut his hair..
  • Waking up in a strange place with strange people, in PAIN
    • In the past he’s refused to take medicine..  How will we get him to take his pain killers?

How could I prepare him for ALL of these new experiences in a nonverbal way?!?!  

How could I cushion each little blow so that he wouldn’t be completely terrified and traumatized the entire time…??

(insert deep breath here…)

Well, looking back, I truly think that God intervened, because it was right at this time that I was taking an Assistive Technology course through my Special Education MSEd program, and one thing we were studying was “Social Stories.”  

Telling stories through pictures.

Not a novel idea, to be sure, but this kind of story is highly individualized and is designed to provide the child with a very specific, play-by-play of what is going to happen.  And when you’re dealing with kids with speech delays, incorporating visuals is one of the most valuable things you can do.  

Not only do you tell them what is going to happen, they can “see” it.  It made perfect sense.  

I took the idea and  created a very simple “social story” for him, to show him a step-by-step playbook of what was about to happen, and ALSO, to show him what he had to look forward to after the surgery was over….

A PRESENT!

So Daniel and I sat down with Gabriel the day before the surgery, showed him this story (below), and very slowly – and very simply – talked our way through it, picture by picture.

Gabriel, tonight you’re going to go sleep, then wake up tomorrow, you’ll have a bath, and then we’ll go to place called a hospital.  You’ll put on a hospital gown, and lie down in a bed.  Mommy will be there and I’ll put a mask on my face, and Gabriel, you will put a mask on your face.  Then you’re going to hold Mommy’s hand, look in Mommy’s eyes, you’ll start to feel sleepy, and you will go to sleep. Then the dentist will fix your teeth.  Then you’ll wake up, and Mommy will have a present waiting for you!  Then we’ll take you home and you can sleep.

screen-shot-2016-12-02-at-12-14-58-pm

Now.  I don’t want to brag (but I admit I AM about to brag a little… 🙂

It worked.  And it worked SO well…!

Truthfully, when he saw “present,” that was it.  After that moment, he talked about nothing else.

“Present?!  Present?!  Present!!!”

Not about the anxiety of going to the hospital, or a mask on his face, or having his teeth fixed, etc.

***********************************************************************

So, the next morning came, and we were ready for the worst, but he gave us his best.

ZERO meltdowns.

He was happy, calm, and compliant throughout the entire day.

A pure dream.

screen-shot-2016-12-02-at-1-03-18-pm

I brought the story with us, and showed it to him multiple times throughout the morning – just to keep it fresh in his mind – but I think I ended up being more nervous than he ever was.  

I was the one who was nervous when they asked him to put on the gown, but it went off without a hitch.  And I was the one who started crying when he was looking in my eyes and falling asleep under anesthesia.  

He was just peaceful and brave.  Pure grace.

And he woke up with the same grace with which he fell asleep.  Groggy, to be sure, but not angry, cranky or even irritable.

So yes, the present was the cherry on the top, but I still deeply believe that it helped him knowing and seeing what was going to happen, so there were no surprises.

And, he LOVED his present!  (a Wii game he’d been wanting).  

Very well-deserved, my love.

Since then, we’ve used similar-style social stories for many things, such as before we jet off for a summer vacation, but I’ve never had a social story work as well as it did for Gabriel and his dental surgery.

Highly recommended strategy for navigating the potential, perfect “Autism” storm. 🙂

screen-shot-2016-12-02-at-1-01-23-pm

Thankful for Inclusive Teachers

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Then Noah’s class comes out in front.

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

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

Daniel & I freeze.

What the HELL?!

We exchange horrified glances.

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

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

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

Poor sweetheart.  This was too much for him..

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

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

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

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

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

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

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

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

I watch in confusion.

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

Nothing in the world makes sense at this moment.

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

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

The air around me is completely still.

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

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

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

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

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

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

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

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

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

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

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

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

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

Perfection.

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

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

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

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

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

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

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

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

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

 

 

 

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….

screen-shot-2016-11-17-at-8-08-24-am

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.

screen-shot-2016-11-17-at-8-10-09-am

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.

screen-shot-2016-11-17-at-8-50-20-am

Alone in a Crowd

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

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

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

Let me explain.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Noah, Please shake quietly.

“Noah, please shake quietly.”

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

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

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

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

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

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

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

fullsizerender_1

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

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

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

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

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

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

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

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

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

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

😦

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

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

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

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

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

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

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

Noah was slowly turning inward.

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

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

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

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

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

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

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

fullsizerender