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.

Something So Simple

Filed Under (Adam, Transitions) by Estee on 13-09-2010

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.

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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Neurological Nirvana

Filed Under (Adam, Communication, Sensory Differences, Single Parenthood, Transitions, Travel) by Estee on 05-04-2010

A continuance of my last post “My Very Important Job,” I want to talk about how Adam becomes very relaxed by the ocean. The sound of the waves, of course and that beautiful sunshine — everyone was out on the beach yesterday on Easter Sunday, digging in the sand and laying around like beached whales. Adam I spend our days together and I take him to restaurants and new places to explore. I take Adam many places in order for him to become accustomed to them. He also enjoys new places especially when he’s relaxed. It is my goal as Adam is able to travel — although we have had difficult moments in our eight years. Yet I’d have to say that the difficult ones are rather rare, which might be why I tend to spotlight them when they occur. It’s funny, really, because as I talk to other parents, it seems to me that other “typical” children have had heart-wrenching tantrums. When Adam is distressed, what is heart-wrenching for me is not the “behaviour” but rather the fact that he can’t tell me with words what he needs. As his mother, I’ve had to learn to never take Adam’s movements, gestures, even types of cries for granted. They are all important pieces of information to me.

The kind of transitions that have been happening such as moving into a new home during a divorced situation is not fun for any child. Adam had his moments of extreme anxiety. In fact, it went on from the late fall until late February. A long stretch like that made me wonder if I’d ever see him smile again. Even though I knew it deep down in my heart, I did experience those moments of absolute panic.

Being in the south with Adam reminds me how anchored he is to me; how much he needs and wants me, not to mention how much he wants to see his mother smile. Watching how much he reciprocates, plays with me, wants to go everywhere with me, and talks (yes talks — he is very verbal down here this trip), is testament to the need for quality time spent with mom doing easy things. It’s also proof to me that I have to work on my own happiness and spend time doing the things I need to do to nurture it because I am not just doing it for myself. It has taken me two years to begin to realize this.

During that transition from fall to late February, there were days when he was so stressed that Adam didn’t even seem like Adam anymore. If I were a parent who would use this kind of lingo (which of course many of you know I am not), it may have seemed like “he wasn’t even in the room,” (which we know that of course autistic people are aware despite what others think of their behaviour, but this seemed like the appearance of a what Kristina Chew has coined the “neurological storm,” and I like that expression very much in terms of describing what these moments are like). For others who distill autism into that robot-type of cold person, Adam may have appeared “distant” — that we were “losing” him. He had lost all of his words, even. For Adam in particular, who is very affable and connected to people he knows well, this was a stark contrast. Yet, maybe mom was similar. Maybe it seemed like mom wasn’t really in the room anymore as I was trying to find the ground beneath my feet again after separation. I wonder how I may have appeared to my son.

Here, happy, relaxed and spending all of our time together, Adam has spoken the following:

Scenario 1: Browsing through a Payless Shoe Store looking straight at us: “Are you done yet?” Now for a parent with a more verbal child, this might seem like a nagging comment. For a parent with a child with few phrases, we were so happy, laughing hysterically!

Scenario 2: Getting ready to go but mom is trying to find her keys: “Let’s go, let’s go! Time to go, mom!!!”

Scenario 3: As he is doing something contentedly and I am trying to rush him out the front door: “Be patient with me.”

Scenario 4: After swimming and tugging on a wet bathing suit: “It hurts me.”

There are many more phrases coming out of his mouth down here in South Florida. He is not speaking in paragraphs, but such sentences are really nice surprises that this mom obviously doesn’t take for granted. Of course, Adam also has lots of physical activity down here. For a child like Adam who always needs to move around, a full day of swimming, running on the beach, climbing and swinging at the park, and going for long walks all seem to be another key to organizing that precious neurological system of his. Mind you, I’m not sure how to replicate the extent of this — the sheer quantity of exercise back in Toronto. Yet it’s another clue into how Adam needs to organize his neurology and attests to the things that make him feel happy and calm.

Break Time?

Filed Under (Acceptance, Adam, autism, Transitions) by Estee on 12-03-2010

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I was taking a forced break this week. I contracted that nasty stomach flu last Friday and today is the first day I’m feeling better. It’ll knock you down off your feet if you get it.

I realized too that it was a forced break and how I push myself too hard. I had been moving and fixing this new house for a year, I’m still doing it, I tried (with success) to transition Adam through a difficult time moving homes and then I suppose I should not be surprised that I got that nasty flu bug.

I got to thinking about how we push through things and quality of life. I’m a real doer by nature and compulsive at that. I often put way too much on my plate until I realize I simply cannot complete all the things I set out for myself. I don’t like to call it ‘setting myself up for failure,’ but rather just that I still need to learn that compulsive doing is perhaps a way to avoid other things (which granted, I’ve been dealing with), and it’s just time to slow down and catch my breath.

We do it with our children too. We can throw so many things at them and change the course too soon. We doubt their schooling, their programs and we throw, oftentimes, too much at them to see “what will work” (to make them “better” or “progress”). Despite my intellectual knowing that this can create stress on children as well as adults and stress hinders any kind of progress, I’ll admit that I have the same feelings as many other parents out there. Thankfully, for the most part with Adam, I’ve stayed the course, that is, once we found the course that seemed right for him.

Adam and I are due for a break soon — to enjoy our new house, take leisurely walks in our new neighbourhood — to learn the routes that Adam enjoys creating to soothe himself and feel at home. We need to play a board game and some more Go Fish. We were doing nicely with that game. I helped Adam turn-take by using visual cues and the joy of this is, we are enjoying each other’s company in playing it.

I am feeling better now and Adam has been smiling a lot in his new home. One of my strategies was to bring Adam home early from school with his aide and surround him with familiar people, and this helped a great deal. It took three weeks before I really saw him begin to settle in. As you may remember from previous posts, he was having severe spasms that made us very worried about him, not to mention extreme sleep difficulties. Anxiety will create sleep difficulties in anyone, not just autistic people. In order to ease his anxiety, I’ve followed Adam’s lead and have tried to stay on top of when he is about to become over-aroused so I can redirect him to something less upsetting. Adam is pretty good at trying to do all of this for himself, but there are simply times, as he is still a child remember, that he needs some guidance and support. It strikes me as odd that we expect our autistic children to “behave better,” and do not consider the stressors in their lives with more deliberation and compassion. It was when I wrote down many notes about Adam’s behaviour during this transition, for there came a point that I didn’t know what else to do, that I not only came to see the patterns clearly, but I, as his parent, could settle down myself. My worries and expectations about Adam may have been so high, that I forgot to slow down for him too. I thought I had charted a pretty good course, but it wasn’t exactly what he had needed. It was at this point I decided to bring him home early from school for two weeks and enable him to have fun in his new home. It was also at this point that we began to see positive results.

Transitions are one thing — they are very difficult for all children, autistic people and especially for Adam. During these times, we have to take more time out of our “regular” routines to accommodate our autistic children. Sometimes we think we are doing everything we can and we can become frustrated with our efforts as parents. When we take the time to look carefully, it becomes easier to alter the accommodation to meet the person’s needs.

So we’ve come this far, and indeed I’ve learned another valuable lesson. Now….BREAK TIME! (Or maybe some Go Fish).

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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.