I am in writing mode which is why my blog posts are coming slowly these days. Stay tuned for one, although as in the title of this ditty, I’m trying to make sense of the things I think. That, admittedly, can take some time.
I came across this with Nick Hornby. As many of you are mother-writers/bloggers out there, I thought you’d also find the “blaming it on the kids” excuse for not writing/sacraficing his “one shot at immortality,” amusing.
I’ve been told that Adam adapts well — it’s not something we hear when it comes to autistic kids. It’s only been a couple of weeks now and he seems happier and settled in his school. As for myself as Adam’s mother, it settles me. For the first time ever, Adam has a desk that flips open, and I’ve already had a chance to see the stacks of binders in his desk. I can’t imagine his little body, for he is the smallest kid in his class, carrying those big things. He has a cumbersome communication device (Vanguard), because he cannot talk fluently. There are always many things for him to take wherever he goes now. It is not a light load.
As Adam becomes more independent, my views of him, of our lives and parenthood are shifting. This is not a journey I will ever attempt to predict. So much has changed in our lives, and now that Adam has switched schools, these feelings are punctuated. I feel that we have reached the second phase or our autism journey, if we can parse life into phases.
These past couple of weeks we have been reading an array of Dr. Seuss’ stories. Every night, I ask Adam to choose which one he wants me to read to him. This evening, he chose Oh, The Places You’ll Go! It is the wisest poem I’ve read in a long time. I thought I’d copy some of the lines because I became rather pensive with all of these changes going on — with Adam’s growth, maturity and the road ahead. While I was reading this story, the lines of the film The Curious Case of Benjamin Button also popped into my head.
What an important a lesson it is for Adam, as it is for us as parents who sometimes get caught up in the idea that our children won’t end up doing or being anything, to think again; how critical it is to see all the autistic adults contributing to society in their own unique way, while also re-evaluating what “success” really means to us. It reminds me, also, of how important it is to have mountains to climb.
Enjoy this abridged version as food for thought:
You have brains in your head.
You have feet in your shoes.
You can steer yourself
any direction you choose.
You’re on your own. And you know what you know.
And YOU are the guy who’ll decide where to go…
…You’ll be on your way up!
You’ll be seeing great sights!
You’ll join the high fliers
who soar to high heights.
You won’t lag behind, because you’ll have the speed
You’ll pass the whole gang and you’ll soon take the lead.
Wherever you fly, you’ll be the best of the best.
Wherever you go, you will top all the rest.
Except when you don’t.
Because, sometimes you won’t.
I’m sorry to say so
but, sadly, it’s true
and Hang-ups can happen to you.
You can get all hung up in a prickle-ly perch.
And your gang will fly on.
You’ll be left in the Lurch.
You’ll come down from the Lurch
with an unpleasant bump.
And the chances are, then,
that you’ll be in a Slump.
And when you’re in a Slump,
you’re not in for much fun.
is not easily done.
You will come to a place where the streets are not marked.
Some windows are lighted. But mostly they’re darked.
A place you could sprain both your elbow and chin!
Do you dare stay out? Do you dare go in?
How much can you lose? How much can you win?
And IF you go in, should you turn left or right…
or right-and-three-quarters? Or, maybe, not quite?
Or go around back and sneak in from behind?
Simple it’s not, I’m afraid you will find,
for a mind-maker-upper to make up his mind.
…Oh, the places you’ll go! There is fun to be done!
There are points to be scored. There are games to be won.
And the magical things you can do with that ball
will make you the winning-est winner of all. Fame! You’ll be famous as famous can be,
with the whole wide world watching you win on TV.
Except when they don’t.
Because, sometimes, they won’t
I’m afraid that some times
you’ll play lonely games too.
Games you can’t win
’cause you’ll play against you.
Whether you like it or not,
Alone will be something
you’ll be quite a lot.
And then when you’re alone, there’s a very good chance
you’ll meet things that scare you right out of your pants.
There are some, down the road between hither and yon,
that can scare you so much you won’t want to go on…
…On and on you will hike.
And I know you’ll hike far
and face up to your problems
whatever they are…
And will you succeed?
Yes! You will, indeed.
(98 and 3/4 percent guaranteed)…
be your name Buxbaum, or Bixby or Bray
or Mordecai Ali Van Allen O’Shea
You’re off to Great Places!
Today is your day!
Your mountain is waiting.
So…get on your way!
This is the video clip where Benjamin’s daughter is reading a letter written to her, from him. You can choose to make the best or worst [of what is handed to you in life]. “I hope you make the best of it.”
Just came in
From the County of Keck
That a very small bug
By the name of Van Vleck
Is yawning so wide
You can look down his neck.
This may not seem
Very important, I know.
But it is. So I’m bothering
Telling you so.
A yawn is quite catching, you see. Like a cough.
It just takes one yawn to start other yawns off.
NOW the news has come in that some friends of Van Vleck’s
Are yawning so wide you can look down their necks.”
I have to yawn. While I haven’t look at the actual study itself, it seems that “The diminished tendency to engage in a contagious yawn suggests autistic kids’ may miss subtle cues that tie them emotionally to others,’ the researchers write in the Journal of Child Development.” (The Globe and Mail, p. L5, September 17, 2010).
Science has not at all discovered the nature of yawning. I feel compelled to qualify this just in case our autistic children may be prematurely described by yet another, interesting, but perhaps not quite precise theory. Yet, that’s what we get in the autism community, don’t we? A helluva a lot of theories, and autistic kids are the prime target.
“The yawn of that one little bug is still spreading!
According to latest reports, it is heading
Across the wide fields, through the sleeping night air,
Across the whole country toward every which where.
And people are gradually starting to say,
‘I feel rather drowsy. I’ve had quite a day.”
From the time Adam came into the world, he could shift my mood. His distress became mine, his happines set me aglow. I remember when he cried and my stomach clenched. I thought it was because I was (and am) a first-time mother. I physically reacted to Adam’s every cry as if I was to dive right in and save him.
Adam is older now. Manifestions of discomfort are different. He has just started a new school and much like it was when he moved with me into our new home, his body jerks as if there is a word behind each abrupt movement. When Adam gets anxious, he can speak less. Instead I get a twitch, a jump and maybe an um hmm kind of grunt. We thought, a few months ago, that Adam was having seizures. Now that we know (via an EEG) that he is not having them, and I am significantly calmer than before. I remember that the twitching passed and so I expect they will again. It seems that with Adam, there are always many steps back before he takes another leap forward.
Yet, even in knowing this, with every grunt, I can’t help feel the exact same way I did when Adam was born. It feels like that early maternal instinct, perhaps. I feel I have to be there to help him, to soothe him. The issue is, it’s getting less possible for me to do it the way I once did.
Adam cannot be comforted by the things that soothed him when he was an infant. All I can do is practice being not only a calm parent, but one who can teach him how to manage himself in these times of stress. For any parent, I imagine “being a calm parent,” takes practice. On those sleepless nights, I’ve managed to teach Adam to read alone quietly in his room and he seems content there. I am trying to teach him to go to the equipment he has for squishing and climbing when he needs this, and he can go on walks for up to three hours to calm his nervous system. While he can’t do those walks on his own yet, at least there are some outlets he has that are self-empowering. Lots of physical activity can also be extremely calming.
Even though I know Adam will be okay in a couple of weeks, and his words and phrases may come back even stronger than before, I just can’t seem to help myself from feeling his discomfort. I simply try not to let in infiltrate everything and the way I interact with him. Yet I yearn for a smile and a giggle during these times.
It is no wonder then, as I walked in the door today, that Adam changed my mood in an instant with a smile. I got him ready for bed, read him a couple of books and he turned over angelically onto his pillow to go to sleep. As I turned out the light, he grabbed my arm to put it around his small body and nestled his soft head in the crook of my neck.
I understood his message loud and clear this evening. Mommy, I need you. Stay with me, I imagine he would say if he had the words to say it.
Something so simple helps me understand everything.
I don’t often put other interviews on my blog but this one was special to me. I remember meeting Lee when Adam was first diagnosed (before the age of two) and her empathetic demeanor towards us for which I am truly grateful. I was a lot more stubborn in those days in terms of not letting people predict what kind of future Adam would have, and I still believe that strength carried us this far, for what it’s worth. Also, I’m a big fan of the facility here in Toronto now named Holland-Bloorview. It has offered wonderful programs and support to my son, Adam.
This picture is of Adam covering his ears while I’m doing a song and dance trying to keep him awake! Say what, you might ask? Doesn’t Adam have problems staying asleep?
Well yes, sometimes, which is why I found this evening so ironic that I have to write about it. Adam was up since two in the morning at his dad’s. When he came home, he was unusually pooped and fell asleep around 5 o’clock. I didn’t have the heart to wake the poor little guy so I let him take a short nap which could spell trouble again at two a.m. It was at this thought that I decided to try and wake him forty-five minutes later. I tried so hard to keep him awake that I found myself creating a kooky song and dance routine to make him laugh. If it hadn’t, I wouldn’t have kept it up for a full hour. While Adam laughed and smiled at me most of the way through it, this moment, which I captured here, signified the end (with no encore).
“Go away, mum,” he said, his small hand swooshing me away.
Since Adam was born, I was sleep deprived nearly every night for three years straight! My infant rarely napped and if he did it wasn’t for long. When I attempted to put him down to sleep, it took me about three hours in a darkened room, all by myself, (just think what three hours means!), only to have him wake an hour and a half or so later.
I need about seven hours of sleep a night. Adam is good on sleep too — more focussed and happy, generally, but his body doesn’t always comply in either falling or staying asleep. As he gets older, sleep is more manageable (when I say manage I mean mostly for me as Adam can still function on little of it) around here and on tougher nights, a small dose melatonin has saved an evening or two. Some days, it has had zero effect. It seems to have little effect if there is a lot going on in Adam’s life.
In 2010 alone, Adam has moved homes, has learned to live in two households (since 2008), and has now changed schools after having been settled in one since Kindergarten — that was four years ago. He started his new school on Tuesday and he has been body-twitching so I am not surprised at the sleep difficulty. Add to that a holiday event last night, well, it’s just so much.
I imagine Adam in his new school trying to figure out his environment, the new people, the new expectations and being completely overloaded. I think of it a little like Tourettes syndrome where individuals who try to “perform” and keep their bodies calm all day long claim that they have to come home and tick like mad. We all do it, as a matter of fact. We all get overloaded and find ways to block out the stimuli. Many of us also wake up in the middle of the night when our lives are disrupted. It is not any different for Adam so while we talk about autism and sleep, much like we do food sensitivities and autism, I believe we have to remember that while many autistic people may claim to not need a lot of sleep in general, it might also be the manifestation of receiving certain stimuli that we are really talking about. In other words, in most of us, we respond to changes, transitions and other matters of life in our sleep and behaviours. Typical kids might also be having nightmares, or cry in Adam’s current circumstance. The specific sensory sensitivity of Adam, however, manifests, we might say, in an autistic way. Similarly, many of us non autistic individuals are gluten and casein sensitive. We just don’t all hand flap (as but one example) when we feel uncomfortable.
Some of the ways we try to ensure good sleeps around here are really cool to cold room temperatures, a dark bedroom, calm soft music and low lights before bed. No computers, no televisions, no noise. I learned early to keep Adam’s personal environment as calm as possible — his “safe haven,” if you will. It’s not always a sure thing, but I’ve noticed that it helps Adam out a great deal.
Yet after school today was quite a different day for us, which is why I am writing this.
Adam is happy now, I’m certain — safe and sound in his bed… and fast asleep.
Safety is a big concern for many autistic people. Sometimes, it’s just not possible to walk across the street by oneself, even though one might be extremely intelligent and capable in other areas. I think of this often so as not to be disappointed if Adam will need assistance in the future. As a parent, I consider it one of my obligations to Adam to ensure his safety. I therefore do everything I can, with the help of others too, to teach Adam safety skills. In the event I cannot, I try to ensure his safety in other ways.
One thing Adam loves to do is go for long walks. On the verge of beginning a new school tomorrow that will teach him safety, social and other life skills in addition to academics, Adam and I took a walk after dinner to his favorite icecream joint. Adam does not run off into the street, so lately I’ve made sure that he walks alongside me without holding my hand. This way I can see how he can walk pretty much on his own. It would be his tendency to flap his hands and look to the ground, and I have no issues with hand-flapping except when he is in an area where he really needs to be paying attention to his surroundings.
“Walk safely,” I repeat. I have chosen this instead of “nicely.” This is not about looking appropriate or “nice.” This is truly about keeping one’s eye on the cars and other hazards. Adam listens. He knows what this means now and he is walking and looking around him.
“What’s coming up?” I ask Adam approaching an intersection and prompt him with “in.” “What do you have to do here?”
“Stop,” he says abruptly.
“Look bot ways,” he says, his words staccato, unfinished, and somewhat robotic-sounding.
“Right. And what are you looking for?”
“Cars,” he says loudly.
“Is there a car coming?” I crouch down to his level pointing around us. Adam looks and answers a yes or a no, depending on whether or not there is one.
I am rather pleased this evening. With the constant repetition of this script that I’ve made up after numerous walks up and down the same heavily trafficked streets, I feel that we’ve made some headway.
I’ll be repeating this routine over and over again I am certain, even if I’m not certain if Adam will be able to one day walk the streets of Toronto safely on his own. It’s worth trying. Worth repeating.
I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.
because finding joy doesn't come without struggle;
because the point is to find it;
because if an autistic person calls autism their way of being, not an illness, then it is;
because every human has value and is a joy;
because despite inhumane acts, I believe in humanity;
but most of all, because of my son Adam.