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).

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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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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