Autism – Page 2 – Autismdreamx3

“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).

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.

From September 2016…

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.

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 a mom 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 simile 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. :))

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 stimming 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, and Noah has this brain 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 with tears welling up in my eyes, took one of the deepest breaths of relief in my life, and whispered, “Thank you God.”

Category: Autism

Noah, Please shake quietly.

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