Estée KlarThe Joy of Autism

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.

“Stop and?”

“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.

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Lately I’ve used this term: “the normal path of autistic development.”  I use it because I do believe that the path of autistic development seems to take on familiar patterns like later acquisition of language, motor planning skills and social skills, to name some. So, although we recognize that while autistic people are similar they are, like all people, also very unique. For the purposes of this post, however, let’s just say, it’s often more elegant to compare apples to apples.

Every once in a while, however, I go check out the oranges. Perhaps it’s because I’m a first-time mother to an eight-year-old boy. I’m quite familiar with that path of autistic development as I find stories in common with other autistic individuals and the parents of them. Yet as a parent of a young boy, I’m curious about the typical eight year old boys. Aside from the speech, the social skills, the sports (among other things),  I notice that Adam is becoming a, for lack of a better word, typical eight-year-old.

Case in point:

He is curious.

I can’t keep up with him in the house.

He wants to be independent and doesn’t want my help.

If I tell him to stop doing something, he gets angry with me.

He climbs and moves and climbs.

I tell him not to.

He does it anyway, even though I know he understands.

He thinks disgusting things are funny.

I don’t like it.

He thinks that’s funny.

I feel out of breath trying to keep up with him.

He thinks that’s funny.

He seeks out attention.

He likes attention.

I find myself sounding like a nagging mother.

I don’t find that at all funny.

He knows things.

He figures people out.

He can manipulate people.

He is becoming more aware.

He is becoming self aware.

That makes me short of breath….my list goes on…..

Are we getting the point? Adam is a boy full of beans. He is growing and maturing and often gets frustrated because he wants to be so independent. That sometimes gets me frustrated as well because I wonder why I feel so ill-prepared.

After climbing upside down into his trundle bed and tearing off the guard rail (I guess he means to say he no longer needs it), I decided to pull out the old Alphasmart Neo keyboard that is so handy to carry around because it is so light weight. Even though we are practising on the Vanguard, a much heavier AAC device, I find the Alphasmart still useful in a pinch. Adam has been practising writing stories on his computer independently. We write them out together, then transpose them, if you will, onto the computer to improve his typing skills. I was quite pleased today to see how his spontaneous communication via typing has also improved. It helped us calm down before bed time this evening and he told me about camp, his counsellors and his day. His body calmed and he was not just the active eight-year-old, but a more empowered one this evening.

Adam wants what he wants when he wants it, sometimes. For the most part, he listens, puts away his things, is now more inclined to get his own things. Then I wonder why I am so out of breath. I mean, it’s what we’ve been working towards for so long. He can put on his own shoes, is beginning to dress himself (okay not perfectly, but I don’t care), and wants to give himself his own shower (I am fearful of the hot water). For certain, I must worry about safety and must always try to stay a step ahead of him. It was this boyish progress that prompted me to check out the oranges. I realized that really, all kids are the same. Just because some can or cannot do certain things, it doesn’t take away the will or desire to do them. Just because Adam can’t talk fluently or initiate play with other kids regularly, does not make him any less of an eight-year-old.

I’ve known that, but to live through our autistic kids’ development just be different for us parents, after all. For so long, we worry about what our kids will not do, and we spend inordinate amounts of time and resources trying to teach them how to do things. There is nothing wrong with this!! Yet when it happens  we sometimes speak about our kids as a series of behaviours instead of noticing that they are growing and maturing as they should — as they should differently, autistically and at the same time, very similarly to any other same-aged child.

I must consider to stop running out of breath and learn to just breathe.

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I am writing this at 3:00 a.m. I left Adam’s room at approximately ten o’clock hoping he would go go sleep. I know I did, but I suddenly woke up at two. I was hoping to fall back to sleep but decided to heed some sage advice and not fight it. I’ve heard that if you cannot go back to sleep, just get up and do something else. The sleep will come.

Sleep is a huge issue for many of us. I remember three years of complete sleep deprivation after Adam was born: three hours of soothing and rocking him alone in a dark room, creeping out of his room on all fours because the floors were creaky and would wake him, only to have him wake up every hour and a half anyway. I remember feeling tired, frustrated and this certainly had an effect on the way I interacted with Adam in the early years, and I didn’t even get a reprieve by way of a naptime. I tried to “Feberize” him to no avail.  I was always flabbergasted that Adam could keep on going on such little sleep. Later on, we discovered Melatonin  which is the only thing that usually helps him fall asleep when he is particularly wired, except for these monthly anomolies where it has zero effect, and I have not discovered the reason specific to Adam.

As I began to quietly descend the stairs in what is typically called the dark night of the soul, coined by F. Scott Fitzgerald,  I hear Adam mumbling softly to himself — quite a change from the infant and toddler days when he would cry.  In fact, my office is directly underneath his bedroom and I can hear him moving about contentedly right now.

I write this because it’s another feat in our coexistence as two different kinds of people. It used to be that Adam would make much more noise and I would spend hours trying to settle him. Perhpas because of experience, knowing that autistic cicadian rhythms have been reported to be different in autistic individuals, I have decided on an alternate strategy: not to fight it. I am teaching Adam how to stay alone in his room quietly and do other things. It still requires some of my effort, my reminding (and perhaps some dark circles under my eyes in the morning), but I know it will be worth it as he is growing and maturing.  As he grows older, he will be able to use this time to read, study, work on the computer, but right now I would hesitate putting him on the computer because he will gear him up rather than wind him down.

This happens to Adam about once a month, I’ve recorded. He seems to wake at 2:00 a.m. and he goes to camp or school and has, usually a fabulous day while I am otherwise dreary-eyed. Still, I am discovering that I too am developing a remarkable energy that I didn’t think I had before. It’s amazing how things don’t feel as difficult if we try to work with the circumstances. In fact, I planned on reading and writing a bit before I realized that Adam was awake.  I’ve ensured that the house is safe in the event I do doze off and he decides to roam, and this might be in large part why I can relax.  So far, Adam stays in his room.

I suppose the only thing is my sensitivity to Adam. I didn’t think I  heard him at two, although I must have. It would be nice to know thatI can sleep through the night while he does what he has to do….safely. We’re getting there.

I sit here writing sort of amazed at how far I’ve come in this. Another milestone, perhaps, not for Adam, the autistic child, but for Estee, the autism mom. It’s past three a.m. now. The dark night will quickly turn to dawn.

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This is the first article published by realtorsthatcare.ca that I wrote on making safe yet attractive living spaces for autistic children. Thank you, Zeshan, for both caring and for being interested in this topic.

While safety may involve anything from picture symbol reminders to locks, I’ve also paid attention to “safe spaces,” that is, making safe sensory places where Adam can escape and learn to self-regulate. As I mentioned in the article, as I learn about what Adam needs, I like to create fun, aesthetically-pleases places and devices that both Adam and I can live with and enjoy.

Photo credits (and all good photos of Adam are taken by) Mike Klar whose work is linked here.

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