New Behaviour

Filed Under (Adam, Autism and Learning, Behaviours, Inclusion, Sensory Differences, Sleep, Transitions) by Estee on 04-02-2011

We talk often in autism about a dissonance of skills and “uneven learning.” It’s an easy thing to notice or say, but it doesn’t seem that easy to accommodate. Not easy, because we still have the expectation that an autisitic person must respond typically.

Adam has had quite the transitional year. He has gone through parental separation, moved to a new home with me and started a new school where the expectation is that he sits at a desk. His sleep has worsened, and his avoidant behaviour in doing certain “tasks” has begun. And yet, my Adam is talking in full sentences more often, is telling me how he feels, and can play a mean “reciprocal” game of I Spy with me. He can draw well (if given the chance) with perspective that is more sophisticated than his same aged-peers, even if his motor planning, that is line, is not as sure and resolute.

I have to say that when someone talks to me about Adam’s “behaviour” I do think in the old-fashioned sense that he is not behaving “well,” as opposed to looking at what’s causing the behaviour. It still pops up from time to time, and I am concerned that implicating behaviour is a way to not only blame Adam, but put an expectation and onus on him that is not fair. That is but one legacy that ABA left behind, although I’m not commenting on some of the methods used by the practice as part of an overall pedagogy. I bribe him a lot to get things done.

Adam needs physicality, lots of movement, interesting content, and a chance to respond more by typing. He needs more preparation, I believe, to start his day, and a different kind of structure in it. What I mean is, by 2 p.m., the boy is tired. I am still trying to figure out what that structure should look like as I orchestrate new programs and activity in his life. Because, Adam is no longer a baby. He will be turning nine this April.

It seems to me that we are learning about how autistic children learn, or at least I’m learning everyday. My process of learning about Adam and trying to work with his team of teachers and supporters never ends. Sometimes, I sit and stare at the wall, I admit, and wonder why we still haven’t figured this out. Maybe I was secretly hoping we would have by now.

I’ve hit the books again. I’m watching Adam closely as he has trouble falling asleep at night. I watch my own responses to him when I feel tired and frustrated. And one thing that surprises me is that I still am not giving up. I don’t want to blame Adam for being autistic. I want so badly to support him and to have support. I am still trying to articulate what accommodation really means for him. I am constantly evolving my attitude, and behaviour, towards him.

Soon Adam will have an aide who will take him into the community, to help him be a part of it, make friends, take theatre classes and go skiing (he starts next week!). I hope to get him into Special Olympics and keep working with those who have helped us along the way. It is clear we don’t have all the answers yet. But if you have some success stories to share, we’d sure appreciate them.

Autism and Sleep (again)

Filed Under (Sleep, Transitions) by Estee on 09-09-2010


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.

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It’s 3:00 a.m.

Filed Under (autism, Safety, Sleep) by Estee on 16-08-2010

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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About Me


ESTÉE KLAR

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.