A Remarkable Night

Filed Under (Adam, Communication, Development, Joy) by Estee on 15-10-2010

Tonight has been a most remarkable night. Adam has probably talked the most he has in his lifetime.

I have no answers why. We’ve supported him, taught him, spent six years fine-tuning, changing and adapting things. By “things” I mean his therapies and education, devices, strategies, habits, you name it. We made sure he didn’t do things too soon, trying to be attune to Adam’s needs, which have been many. His needs keep changing. It’s a journey. It’s a dance where the steps keep changing, a jazz troupe with a new riff or musician every few weeks. We aim for consistency yet nothing stays the same. Adam never stays the same.

As I said in The Autism Acceptance Project video a few years ago, “when a children are happy, they can learn.” Sometimes I had doubts. Should I have pushed Adam harder?, I asked myself after he lay sound asleep after a difficult day, or a day when I was challenged by others who insinuated I was not doing enough for my child (while not really knowing us). I’m not here trying to give myself kudos or to dismiss the choices of others. Yet, there is a part of me tonight that is proud that I stuck to my guns by doing what I felt was right for Adam as well as my needs and values as his mother.

Our lives, as that saying goes, are comprised of the choices we make. I’m quite certain I’ll continue to make mistakes like all parents, but overall I’ve always believed that being as sensitive to Adam as he is senstive to his environment and to others has been a necessity. By viewing it as such, I made the choices accordingly. For those of you who don’t know us, this started Adam was only 18-19 months old. By the way, I expect my ideas and parenting style to be continuously challenged. It seems to go along with the territory of being a parent. It is gratifying that once in a while we get some kind of affirmation about the choices we have made. That is what this blog post is, in part, about. But really, it’s more about the need to be sensitive and to be open to change as well as our ability to adapt. These are the “things” I have to continuously re-learn. I hope I’ll get better at it.

Adam has had quite a year, not to mention years of going through “people” in his life because of the education and support he has required. His life has been pretty consistent, mind you, but not without upset, as life is for everyone one way or another. This year, he began a new school and the change took a few weeks of getting used to. He lost his words and he engaged in more “OCD” or ritualistic behaviour, desperate to create order out of chaos.

Over the course of four weeks, this has abated. He still has some difficulty letting go of some of the rituals that he began as a result of the change.

“I can’t stop. I can’t stop,” he told me tonight after I silently redirected him towards my bed. Too many words from adults can be irritating not to mention too many “no’s.” He has taken to getting in and out of two bath-tubs in my home. He wasn’t that happy with me, but the crying was brief, about two minutes. I turned on the soft music, helped a rash that was bothering him to soothe Adam a little more, and we just hugged. “I can’t stop,” he said again calmly.

“I understand you are telling me you can’t stop,” I repeated so he would know that I was listening. His body relaxed and he lay deeper into my arms.

That was the only challenging part of the evening. The rest was a night of Adam telling me that he went to the zoo today, that he saw a Gorilla and a Lion, that his rash was “itchy…it is bothering me,” to what he wanted to eat, in full sentences — not the usual two or three word phrases. On his walk he said things like, “I want to go this way,” or “I don’t want to go there.” Perfectly. In the evening he asked for certain lights to be turned off. When I was getting it wrong several times over (there were a few lights on and it took a while to figure this one out), he pointed towards the hallway. “Turn the light off outside!” he said forcefully. Phew. Glad I finally got that one right!

He was asking for books unseen (therefore unprompted… all of this was not prompted in any way), and we read quite a few, of course ending with Dr. Seuss. Tonight was Horton Hears A Who …”a person’s a person no matter how small…”

Change is hard. Change can be good. We can’t stop change. Finding the right time to teach certain “things” has been a challenge because Adam is bright but very sensitive. Knowing when to push and when to back off is based on the uniqueness of Adam, not solely on Adam’s autism. I thank the team who keep sticking with us on this remarkable journey.

A remarkable, notable evening.

The Eight Year Old

Filed Under (Acceptance, autism, Development, Parenting, Safety) by Estee on 18-08-2010

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.

We Go With The Flow

Filed Under (Development, Joy, Single Parenthood) by Estee on 19-07-2010

Adam and I are enjoying what Toronto has to offer. A lover of music, I’ve lugged him to the jazz festival and other performances in our great city. We play piano, sing a lot and I’ve been teaching Adam how to dance. He took it upon himself to dance on my feet. It’s something my dad had to teach me when I was a little girl. Adam just did that on his own. With all of this activity, one would imagine that child would sleep well.

Like many autistic folks, however, Adam doesn’t always need a lot of sleep. I, on the other hand, need my seven hours. He’s still so young, I am unable to teach him at this point to do work, go onto the computer and let me get what I need. In many ways, it can be like having an infant, still. If I left him to his own devices at this particular age, he would turn his room into a gymnasium, climbing all the furniture (which thankfully I bolted down).

It might have been the storm last night that woke him, I’ll grant him that. I heard him yelp. As Adam begins to talk more and find his “voice,” he is also becoming much LOUDER. In the middle of my daze at 2:38 this morning he came into my room and said, “Wake up! Let’s talk!”

My eyes groggy, I couldn’t help but smile, even though I wish this came at seven in the morning. “Adam quiet,” I said, not believing that I’d ask my previously non verbal child to be quiet! “It’s time to sleep,” I pleaded. To this he responded with laughter, like the gods.

I could have gotten really frustrated, the way I have in the past sometimes. I just told him to climb into my bed and I let him chatter away as I dozed beside him, knowing that at least a little rest is better than nothing at all. Occasionally I tried to persuade him with a “sleep,” word or two, and he would at least quiet down for a bit.

At six this morning I gave up trying. I turned on Nora Jones, made breakfast and dealt with my fatigue with a dance. Adam, still energetic and happy took his position.

Sleep or no sleep, I know I should not be complaining.

Our morning dance:

This morning’s song, Shoot the Moon, by Nora Jones:

Where’s My Mother?

Filed Under (Adam, Development, Single Parenthood) by Estee on 06-07-2010

In the sweltering heat, Adam has returned to the camp he has attended for several years now.

“Hey Adam!” the counselors greeted, eager to embrace him under a tent yesterday which did not quell the wall of heat in Toronto. Adam processed the swarm quietly, standing before the semi-circle of enthused pubescents taking his time to assess the environment and some new faces, let alone the emotional excitement and kindness before him. Sometimes it just takes some time before Adam is ready to jump into their arms with a like embrace.

Before yesterday, Adam and I spent the week together — that space and time between the end of school and the beginning of camp. Long, hot days needed to be filled because Adam doesn’t love to stay at home. He loves to go out and explore new places all the time. He likes to walk and walk, and if there is an intriguing pathway or staircase, he might convince me to go along with him. Sometimes I can convince him to come with me too, and so “well-behaved” is he with his now single mom who needs to get “stuff” done. I find myself, in my newer role, asking for his patience with me and he obliges generously. I realized that we have become quite a dynamic duo in our new circumstance, although I admit that being a single mother of an autistic child isn’t always easy in the sense of Adam’s differences and my need to always check my beliefs and expectations at the door.

It also occurred to me that my mother, in a different time and circumstance, spent a significant amount of time with me. She lugged me to the grocery store, her doctor’s appointments. Where-ever she went, I accompanied and I recall what an important life lesson this was. I got to see how my mom acted around the doctor and the dentist; how she interacted with the butcher, the neighbour, the banker, and how she negotiated with life.

In this day and age of programs — and don’t get me wrong, I believe children benefit by them — I not only thought about how children lack going outside to play the way we did when we were kids, but that I tend to get things done only when Adam is in his programs or in school. My parents didn’t have the benefit of such programs. Nor were they considered as necessary in the day-and-age of “go outside and play until the sun goes down.” I suppose our parents got things done when we were out of the house too, but I remember being more connected to their activities overall.

Certainly it’s not safe these days to let our children out all day long without supervision. The world is a changed place indeed. For my autistic boy, safety is of vital concern, friendships are not made easily, and he would wander off and get lost if left to his own devices. Adam’s playmates are aides and kids with aides, camp-mates and like children in music, art or sports programs. Sigh…the world today.

Yet last week, that dear week, I had Adam to myself. Adam accompanied me (almost) everywhere and didn’t complain, in fact, he seemed to enjoy every moment with me. When someone stepped in for a bit to see him, he took me by the hand to insist I come with. All parents know those days when the babysitter arrives and the child doesn’t want mom or dad to leave. My son Adam didn’t express that all too much when he was two and three-years-old. At eight, he is able to show it more.

And so, last week when I left to do some more grocery shopping on my own Adam asked his aide, “where’s my mother?” For a child only beginning to talk in sentences, and ones that are still very hard to come by, it’s quite a question. Perhaps he had been thinking that all along. In those earlier days, we parents may be inclined to think that just because our autistic children are not verbally articulate, that they are not wondering, thinking or understanding so many things the way a typical child might. Surely this sentence, relayed by his aide to me, was music to my ears, but I’ve never ignored the fact that I think Adam often wondered many things.

As I walked into the house carrying a load of groceries, overheated and glad to be home, I saw Adam at the end of the hallway in my kitchen, eating his snack looking at me, beaming from ear-to-ear.

Autistic Development and Those So-Called “Issues”

Filed Under (Autism and Intelligence, Autism and Learning, Communication, Development, Sensory Differences) by Estee on 01-07-2010

One of the most talked about issues in autism is the issue of verbal communication or “functional” speech. That is, speech that is reciprocal, social, conversational. For Adam, there have been major challenges in this area and he has had to use augmentative forms in order to communicate many things, yet for the person who understands his communication, he is communicating all the time. I do not find it too difficult to understand and the one shortcoming I may have is the tendency to feel frustrated when he is — when he cannot get a more complex message across.

Adam turned eight this year and much of this is beginning to change. Adam began to talk in sentences, began to show me things and started to become “the teacher,” in the sense that he would test me on the things he wanted to talk about in books. He learned certain concepts such as what something was NOT as opposed to what it was, among other concepts.

There are a couple of things I want to write with respect to progress in communication ability, quite unscientifically, in this post, for I have not yet found some good citations to support my theories about autism and development. So take it for what it’s worth and perhaps you may see some more of my posts deal with this — with citations.

I’ve been reading how to teach philosophy to children through children’s books: Big Ideas for Little Kids: Teaching Philosophy Through Children’s Literature, by Thomas E. Wartenberg. When we refer to teaching “critical thinking” to autistic children, it usually has to deal with teaching the more functional types like putting puzzles together or teaching Feature, Function and Class — for those familiar you know what I mean. These are the basic skills we believe are absent in autistic children because their very expression is difficult to manifest — be it for attentional reasons or motor planning issues, or both.

We do not address for the “profoundly autistic,” “severely autistic” or any autistic child, for that matter, often enough, how to read books, how to question and how to think abstractly because we have decided that autistic people learn literally. While this may be in part true, we miss an opportunity to help along the critical aspects to being human — the ability to question. I’ve read many a time how we wish to teach some flexibility in thinking in autism. To me, teaching through books and by taking a lead in creative ways to view things from different angles is not only an exercise for Adam, but also for myself. We would all stand to gain from working to think in ways that may not be familiar to us.

We are more often concerned with our children knowing how to read the words (certainly this is the first step to reading at all). We do not learn how to talk to an autistic child who has difficulty with that reciprocity, how to really push forward, even though their manifestation of understanding is not what we expect. In my view, I feel it is dangerous to assume that Adam does not understand as much as it is to take for granted that he can just learn the way a typical child does. Yet all those years of puzzles, functional skills and communication issues makes me worried that Adam is missing the most important component of life learning, that is, to ask questions about everything. I’m quite sure I will be writing more about my in-house experiments here.

That said, I have a short story to tell. With some severe weather hovering around Toronto, there was a downburst, or a tornado. Both Adam and I enjoy watching the weather reports. With bad weather, we are glued to the TV. I was talking about funnel clouds and how they are dangerous.

“Why?” Adam asked.

“Because they can rip down houses and trees,” I said.

“Why?” he asked again. I am thinking about a three-year-old I once knew when I was an older kid and how every answer to a question he had ended up with yet another “why?” Like that, the conversation went on a bit between Adam and I. He kept asking me “why?” until I ran out of answers!

For a typical child, asking “why?” is expected. For an eight-year-old developing autistic child, it was another one of our milestones.

With that “why?” also came a series of sentences and conversations this week. With those conversations came difficulty falling asleep and some body jerks. Also interesting that along with an increased in verbal expression came an improvement on his fine-motor skills at the dining table as well as gross motor skills I noticed while watching him outside climbing structures I’ve never seen him climb before. Could this be a reason for the sleeping issues? Could his body be a-buzz?

Again, I am making a possible correlation that needs to be tested because dad let him sleep in over the weekend (school was out) and this is reason enough for not being able to go to sleep the following day and, perhaps lack of sleep and other frustrations lead to more body jerks. Yet I also wonder, only because I’ve seen it before, if sleep issues and body jerks have to do with an increased output of communication and other “manifestions,” — overall “progress.” So often we view “issues” as a result of “delay” and “behaviours” and we label it as if it is something we have to get rid of or something that worries us. Yet, with this example, Adam is trying so hard to express himself and his body may be following him as it attempts to process the steps we have taken for granted. If we take a view that such preservations, behaviours, sleep problems might have to do with processing, progress and development, how might we address and teach autistic children differently?

It’s something to think about when we study autism and when we rethink the, perhaps, very “normal” path of autistic development.

Miraculous or Naive?

Filed Under (Acceptance, Activism, Advocacy, Art, Autism and Intelligence, Autism and Learning, Autism and The Media, Communication, Development, Joy, Parenting, Politics, Writing) by Estee on 24-05-2010

It is said that one should write something that they would like to read. In those early autism years, as I was in that period of coalescing my arguments and thoughts about autism, I have enjoyed writing about Adam, motherhood, and our “journey.” There is a sense of therapy to writing and that can be beneficial for many people undergoing a similar situation. Writing can help us transcend the feeling that we are “all alone.” Yet I have the feeling after being a few years in this, that filtering autism down to miracles and gifts as well as horrors and tragedies has just become naïve. It’s time for all of us to up the ante (I am turning the finger towards myself here).

There is no new take these days on writing an autism and this in and of itself seems to me that either I’ve become over-saturated with the type of material, or I’ve simply reached a new parenting stage and where it takes me with writing here, I am not yet sure. I have tried to post a few interesting presentations on the blog the past couple of weeks. There are so many performances and exhibitions, and art is a segue to complex ideas often then used and analysed also by science as much as science can influence art. Of autistic performance and exhibition, please don’t label them as “miracles.”

I’m fatigued by references to miracles. Autistic achievement, as is discussed so often here on the blogs, is so often referenced as gifted or miraculous. There are no miracles. There is only what we wish to believe.

We’ve noted what a detriment to the autistic community such stereotyping can be. Even if it’s true that autistic thinking is different, and of benefit to our society in many ways, this is no reason to call it gifted or a “miracle.” When it comes to a play, or an autistic child typing, or a group of autistic children performing for an audience, I’m really taken aback at references to the achievements being “miracles.” However, if we are referring to all of us as being “miracles,” I sort of get that — I get that embrace of the miraculous state we call human. Miracles are a short-cut answer and resolution to that which is unresolvable. Try to tie it up with a convenient conclusion, and we will all fail.

Acceptance is as acceptance does, and in all likelihood, the name is too simple while embracing everything. “Simplicity embraces exactly the right details, the right difficulties, the right complexity,” but it also requires am effort in learning, observing, studying and yes, striving to argue well here in this contentious autism community. Acceptance is not simple. Autistic achievement is not a miracle, although it has been so unrecognized in human history that it is not surprising that we have labeled it as such. This is humanity we’re talking about. It’s messy, difficult, wonderful, full of frustration, anguish and yes, joyful.

And this may be the only miracle.

Visualcy

Filed Under (Autism and Intelligence, Autism and Learning, Communication, Development) by Estee on 16-05-2010

The nice thing about art is that it is a language without words. It’s why I believe strongly that it is an important (not nice and trite, isn’t-the-Autie-a-genius) approach to appreciating not only how autistic people may see and develop, but of course of understanding humanity — a very broad statement, I know, but art is a way to bridge the barriers of looking at people with neurological differences as “abnormal,” “retarded” and the like.

It is also highly ironic that I write about art and that the art world seeks so many words to critique and analyze it. Yet, at the end of the day, we have a gut response to art before we have an intellectual one.

I was thinking about this as Adam has turned to art. This is not just peripheral observation…it goes deeper. Adam studies all the elements of things with ferocity and concentration. He will hold any object in his hand — even a part of an object, turn it around and study it, tap it and consider all of it’s physical properties. He may or may not label it, as he has done since he was eleven months of age (labeling, that is), but I consider that his sharing in this manner is simply his way of sharing with me because he has trouble with words. Yet, his understanding goes far beyond the label.

W.J.T. Mitchell, in his essay Visual Literacy or Literary Visualcy? (excerpted from Visual Literacy edited by James Elkins) asks how seeing is different from reading. “Even more interesting, what would happen if we reversed the positions of tenor and vehicle in the metaphor, and treated reading as ‘tenor’ — the thing to be explained — and vision as the vehicle that might help explain it? What would happen, in other words, if we thought of our task as one of research and teaching in reading, based in models drawn from seeing and the visual system?” (p.11).

It is in this vein that I believe we can begin to explain our words about autism and challenge our very basic assumptions. For instance, consider the two drawings below. Adam, at the age of 8 has fine motor planning difficulties. It is very hard for him to hold a pencil or crayon, but in the first drawing one can see it’s coming and that he is trying extremely hard to express himself.

The drawing beside it, also a Lion, was executed by a same-aged “typical” peer. By contrast, one can see the marks in this drawing made with strength and certainty whereby Adam’s drawing seems a little tentative and soft by virtue of his motor planning difficulty. Take another look. Adam took great care and time rendering that drawing. So much so, he even walked away, came back to reconsider it and lightly put the finishing touches carefully on the tail several minutes after it seemed finished. It was so lightly drawn that it was difficult to photograph. Look at the perspective and how he tries to implement it. It is not a flat drawing. He can see how the body has several dimensions. Compare it to the “same-aged typical peer” drawing — wonderful in its own rite but by contrast, there is, as of yet, no conception of perspective. In one drawing the earth is round, in the other, flat.

Adam's "Lion King"

A drawing of a lion from a same-aged "typical" peer

It is interesting to me to watch Adam’s “visualcy” manifest. It is interesting because he does not fit into any developmental mold. While his hand his light, he is ahead of the curve by way of his perception. One might mistake motor-planning difficulty with Adam’s “retardation,” as it was formerly labeled. Now how dangerous is this when we consider how to teach an autistic person? What assumptions about his intelligence are we making? When I think of schools I get extremely nervous about moving him too slow or too fast. One simply has to SEE.

——

Reference:

James Eklins, Visual Literacy, New York: Routledge, 2008.

Slipping Through My Fingers All The Time

Filed Under (Development, Joy, Single Parenthood) by Estee on 15-11-2009

“Barely awake at the breakfast table, I let precious time go by…”

Hovering over the small stainless frying pan I cook his eggs, sunny side up. He always likes them sunny side up. I think it started when I started making them into “Baby Einstein Eggs,” I would call them where I would place his favorite vegetables and transform two eggs into eyes, then glasses then thinly sliced peppers into cow-licked hair.

“Baby Einstein Eggs,” he said back deliberately, his voice still sweet and squeaky with staccato rhythmn as the words were hard to say. I watched him look at the eggs with such delight, moving his head closer and then back again like the humming bird I always call him, his hands flapping just as fast. I remember now because the eggs have lost their appeal. When did it happen?

He goes to the door now on his own in the morning. He gets his shoes and puts them on before I ask him to. He has even taken to putting on his coat, ready to start his day. Ready to go outside before I am ready. Ready to leave. His assistant arrives to take him to school. He grabs his lunch bag on his own, no need to remind this day. He trots out the door.

“Good-bye, Adam,” I say, hoping the desperation is hidden behind my eyes. “Have a nice day. I love you!” He turns and smiles at me.

“Bye-bye, yes.” The yes is the punctuation mark. It’s the you want me to say good-bye to you so here it is, kind of yes that has become his signature. It’s the way I know he acknowledges that he must say the same thing back, or that he’s heard me. He doesn’t use the yes when it’s a sentence all of his own making. Those sentences are few, but so precious.

When I pick him up or when he arrives home by another, he is so happy to see me and it makes me want to sing. I am relieved to see him. He grabs me and hugs me hard. When he leaves — now to school, to his dad — or later to his life or maybe even his wife, it will be exactly the same.  He grows differently but also like any other. They change, they become independent or maybe even quasi-so, but things do change. Every morning seems the same. I wake. I’m tired. Barely awake every morning, I try to remember never to forget. For the moments, as they should, are slipping through my fingers all the time.

Expression

Filed Under (Autism and Learning, Development) by Estee on 10-11-2009

I’m hard pressed to ever state that Adam really can’t express himself. I mean, I find myself saying it some days in terms of verbal communication. But really, he is an expressive guy. If I were to take an accounting of his “expressiveness” and his “ability to communicate,” I might end up with something like this:

1) He is so affectionate, but not to everyone. He is discerning in who he expresses affection to;
2) He only really wants mom and dad and gives us extra special hugs and tends to shun others away as he wants us all to himself;
3) He knows who his family is because he has variants of affection for different people;
4) He cries when he knows he has broken or made a mess of something;
5) He cries when he thinks he’s upset someone, or that he knows someone is upset;
6) He dances when he’s happy (not the happy dance, but real dancing);
7) He sings what he can’t say — when mom and dad were together with him the other day, he sang Beyonce’s “I’m a Single Lady” — a song that came out at the time of the separation. Here I will add a little bit of my memory of other children I knew when they were little who dreamed of their parents back together again. I imagine this is Adam’s way of telling us the same and that he recognizes the current situation;
8) He laughs at funny things — he laughs at my jokes and he laughs when he’s trying to make me laugh;
9) He talks more and more each day;
10) He types more and more (independently) each day;
11) He reads out loud and understands what he is reading;
12) He knows how to manipulate certain people who all respond to different things. He knows how to “work it”;
13) He uses a word to describe what he is looking at (i.e.; he may type sock and then I can help him build a sentence to correlate with the work GAP he is peering at on his sock so he can type, see and say).

I could go on but it’s late and I’m tired and I’m just basically trying to say how Adam is such a Mensch to me in every way. He works really hard, he wants to do things, he loves people, and his will is strong. I see and experience how hard it is sometimes for him to stay focused and I’m still very proud of him. When his fabulous assistant (she has been with us for five years now and counting), told me that he went wild for Carmina Burana at school, I smiled. I went wild for Carmina Burana when I was young and consider it to be my foray into classical music because it’s so dramatic. Adam danced and moved his body to the music. When I see his notebook wherein Adam is struggling to draw, he is specific about what he is drawing (his assistant writes what he has named his characters that he struggles motorically to draw). And all I can do is keep trying hard with him, to learn, to keep an open mind, to provide him various modalities with which he can work and express himself.

Expression, thank goodness, comes in so many colourful forms.

Super Boy

Filed Under (Adam, Development) by Estee on 11-08-2009

I take a moment to talk about Adam, which I do so little of lately. He has been the inspiration for this blog and all my thinking and rethinking about autism.

He deserves a great deal of kudos for turning minds around. He goes to camp and he can make everyone laugh and smile. He comes home at the end of the day, and I am told that everyone loves him. His smile can brighten an entire room.  Often, I am given credit for this, but it takes two. He was born with the affable disposition. Yet, I do often wonder how, if I’d kept him behind those closed ABA doors (the style of ABA at the time of Adam’s early instruction), if he would have remained his true self.  It is a question I’m sure all parents ask themselves, and there is even a book out which follows children with various backgrounds to adulthood:

cover
Fragile Success
Ten Autistic Children, Childhood to Adulthood, Second Edition
By Virginia Walker Sperry, M.A.

It seems like an interesting attempt at trying to create proof, to distill what makes an autistic person “successful” in life, yet success is also in how we measure it.

I, for one, have measures that seem more akin to a revolution that’s happening right now. My measure may be more along the lines of those who reconsider behavioural economics — a movement away from growth (the thinking that image and objects will make us happier) to the things we do and the way we think that make us happy.  Like all parents, I want Adam to be happy. I want him to learn. I want him to learn discipline without losing his joie de vivre. I want him to want things in life that will make him happy. So far, I think we’ve been successful. He has a natural wonder and curiousity. He still has difficulty with speaking, but he tries hard to string his words together. His drive often amazes me. I do not think the word failure is in our vocabulary.

I do not know if we can measure what makes autistic children become “successful” autistic adults. Like all of us, we are born with personality, to different families with different circumstances.  Adam reminds me of the happy-go-lucky young girl I was once. I’ve suffered my blows, but Adam continues to bring me out of any depths that may tempt me to wallow. He needs me. He thrives on my happiness. For now I am taking heed of the oxygen-mask analogy. I’m taking good care (finally) of myself. I am losing the weight of the world that I chose to once carry. I am lightening up in every sense.

Here is Adam today as “Super Boy,” going to camp.

Adam, you are indeed super. You are my hero.

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The Autistic Foodie (and Other Passions)

Filed Under (Adam, Communication, Development) by Estee on 20-04-2009

There’s nary a moment when I won’t find Adam engaged in some new passion. Unlike the so-called “static” nature of supposed autistic interests and fascinations, I find Adam’s interests variable and ever-evolving.

Lately, he loves puppets, faces, art (he’s an excellent artist), making faces, swimming, the ocean, and most of all, reading cookbooks and then, cooking. He has always enjoyed cooking, but now that he has better coordination, cooking becomes more fun. I thought of this when I traversed upon this website: http://www.mywire.com/pubs/Lets-Cook/

Adam deciding what he wants to eat at Tony Roma’s

We’ve always wrote out the recipe in visual form for Adam to follow, and I know many parents employ this structured approach which works very well. For those of you who are new, you might want to check it out. It’s a good step to break down other creative projects as well, and might give parents some ideas.

Adam used to be the young boy who wouldn’t have much of an attention span. He used to “obsess” over his alphabet and numbers, and love to watch videos over and over again, and we expanded his interests by using his own and also allowing him to just be with his own. While he likes the alphabet I once never imagined, in his early days, when he wouldn’t need the alphabet anymore (in the calming sense or as a restricted interest). I could have obsessed over this as a parent and let it (excuse the pun) eat me up. Now, we watch little tv and spend our days reading, making things, going out, going to the theatre, playing and visiting friends, discovering new toys and yes, in the pool of our activities, there is still a lot of swimming.

I keep wondering how to relay this to a new parent of a young child who has just received an autism diagnosis. How do you talk to parents about how life will be? It is a question that many of us “older” parents think about a lot. There is no way, I have concluded, to offer advice except to speak of our own path and acknowledge that everyone has their own journey. My life with Adam is different than I thought it would be before I had Adam or before he was diagnosed. Yet today, as we’ve simply lived our lives, we no longer fret our days away. We just do. We just live. Only time and learning to live with Adam as a member of our family who as GIVEN so much to us, has it mellowed me. One could read this journey by going back to the early days of my blog as I observed prejudice, among so many other injustices. There comes a point, unless it is outright cruel and pointed, that one becomes less angry and understands that the only way to social justice and acceptance is to carry on with a level of determination and constancy.

To live peacefully is our ultimate aim. To accept autism isn’t to accept in order to cure or “recover” (a silly word used as a curtain to hide the word “cure”). Acceptance means to leave what is and get on with living.

Hmmm… I wonder what I feel like cooking tonight….

Spring Has Sprung

Filed Under (Adam, Development) by Estee on 16-03-2009

If you live in Toronto (or any part of Canada for that matter), it is so amazing to be outside again. Here in the city during the cold winter, we rely on cars, not snowshoes, to get around. Sad, I think, for we would be outside taking advantage of winter a lot more if city snow didn’t turn gray or melt with salt. City winters are wicked.

Nevertheless, spring has sprung. Or at least it’s about to. Adam and I are out walking, taking photos, and he’s now beginning to have his first “conversations.” He uses that word now too. He tries very hard on the telephone and afterwords the word “conversation” springs forth with ferocity from his mouth. He has become outgoing, say his teachers, and he speaks louder too.

The other day, he looked at me intently and asked for a dog. “Black,” he said forcefully. When Adam is sure about something, I can be sure he’s sure. I couldn’t help but feel a wave of guilt, for when recent events transpired, I got rid of the dog in order to resettle. I just didn’t want to leave the dog alone. So Adam is remembering his dog.

“Kiki,” he said again loudly, turning to look me in the eye.

“You can see Kiki,” I said reassuringly. Kiki is now living with friends just around the corner. Just when I thought (even though I should know better) that Adam wasn’t so keen on having his big Goldendoodle pooping and throwing up around the house, I was proven wrong. (I guess Adam doesn’t remember that part).

Now that we will be moving in the summer, a dog might, sooner or later, be imminent. A smaller dog, perhaps. That is, if he keeps asking for one.

When You’re Not Sure, Try It On Anyway

Filed Under (Development) by Estee on 15-01-2009

Adam has been hanging out with friends. He has three friends now that he hangs out with on weekends. It’s simply delightful for me to watch him take the hands of his patient little friends (shows that kids CAN be patient, loving and kind), and lead them around to what he wants to play because he can’t always say it. We didn’t use RDI or facilitated play groups, by the way, to achieve this skill. It doesn’t mean we didn’t try those things long ago. We did. We just didn’t keep those “methods” up. Adam has learned by being engaged with people while being respected when he needs a break from them. He observes.

I was thinking about Adam and finding what he loves. We tried a few things over the years — movies — those were difficult to sit through. I can name three movies he did sit through from start to finish:

Charlotte’s Web
Happy Feet
Wall-E

Movies are harder than believe it or not, theatre. Adam will sit glued to the theatre. So much so, I’ve been able to take him to major productions. He loves to enact too. It makes me think it’s time for a drama class. He watches videos and he tries so hard to say (he has verbal difficulty) what the characters say. He tries to imitate what they do (he has had motor planning difficulty which is improving significantly). Adam tries so hard and this is his way. So it puzzles me when parents of autistic children take away videos because they believe their children are “stimming” over them. When I watch Adam, the provide some repetitive comfort from an over-stimulating day AND he is desperately trying to learn.

As I think about what autistic adults have told me — using puppets (Adam loves puppets) or “Pretending to be Normal,” it reminds me of how we all have to try personas on to find our own. It takes so much effort and I respect Adam’s. Drama is a really healthy way to explore feelings and one’s SELF. It’s what I believe is a safe haven for Adam to explore himself and probably the most healthy and accepting way of developing one’s Self overall.

As we’ve grown into adults, don’t we all have stories of pretending to be something that we are not? By trying certain things that may not feel natural at first, we come back to being who we are meant to be.

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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.