My Pre Teen Is Born

Filed Under (Acceptance, Adam, Development, Single Parenthood) by Estee on 27-04-2012

It’s happening. Adam is growing and with it, a new attitude. Puberty is peeking through his ten-year-old countenance.

I realized this pre-pubescence more accutely yesterday when he emerged from school. Usually full of smiles at seeing me, he looked cross. “Daddy’s house!” he exclaimed. His dad and the nanny tell me that Adam often asks for mommy when I’m not around. On occasion, Adam will check to see where I am, and he seems reassured. It was new for me to hear this declaration. When he looked disappointed to see me, I felt a mix of rejection and giddiness at the same time. After all, Adam is a boy and I hoped there would come a time when he would want to be with the boys. A boy is supposed to want to identify with the males in his life. But what of me?

“Hi honey,” I laughed, bending down to kiss his cheek. Adam’s eyes were still serious and he didn’t lean in to my lips as he usually does. “Daddy’s house!” he said again.

“You don’t want mommy?” I asked, forcing myself to appear a confident mother. Adam was silent as the teacher and I chit-chatted as usual.

“I couldn’t believe it today,” she said, her eyes wide and proud. “It was like watching an adult Adam. He did everything that was asked of him.” She put his hand on Adam’s shoulder while he was listening and looking at my car. “At one point my sentences were so long, I thought he wouldn’t understand me, but he could follow everything.” I took in a long breath and half-smiled, grateful for her positive report and enthusiasm. I grabbed the handle of Adam’s small red rollaway suitcase he takes to school and handed it to him as he began walking away.

“Thanks so much,” I said to the teacher turning and waving, and then tuned in on Adam who was walking ahead of me to the car. “Hey Adam, do you want to call Daddy?”

“Yes,” he replied firmly.

We got in the car and I called his dad on the Bluetooth. “Adam said ‘daddy’s house’ when he got out of school,” I said, “so we’re calling you.” Adam listened to his father’s cheery ‘hey buddy’ voice, and Adam talked a little — phone conversations are difficult for Adam to respond to. Afterwards, he seemed content.

We arrived home and Adam washed his own hands and headed for the kitchen for his snack, all without my reminding. He had a piano lesson, and Grandma and Grandpa came for a visit. Every time I went downstairs to see how he was doing, though, he pointed to the door. “Go away!”

“Okay, okay!” I said, trying to be jolly but it was a put on. My kid doesn’t want me. What an ingrate…that little schnood! (a word of affection that was developed in my family years ago). My feathers were a little ruffled and I mumbled briefly. What did I do to him today? Nothing out of the ordinary happened. Is this what is to come? My thoughts were skipping all over. Never you mind, Adam. I’ve been here for you all along and no matter what you think, I’m always going to love you. Then I started Googling in search of what age boys start really wanting their fathers.

As much as we want our kids to want us in a divorced situation, I welcome Adam’s need for his dad and other members of his family. It’s a new kind of separation like watching a child graduate or leave the house for the first time. While I am celebrating Adam’s growing independence and associations, I feel that this breaking away is just the beginning, and I’m a little sad too.

Everyone always said to me while Adam grows up, “consider yourself lucky that your kid doesn’t talk back to you.” That was always difficult for me to reason, as I longed to hear Adam’s voice and more complex thoughts, or his yelling at me that he was going to visit his friends. Thanks to his typing and his growing verbal ability, this is slowly changing, but having him grow up is surprisingly challenging in a way I’ve neither experienced nor expected. Is it perhaps more challenging when we have to let more dependent children “go?” You’d think I’d be jumping for joy, and while I sort of am, I missed his need of me. All sorts of “separations” were running through my head — all good, natural and still, emotional.

I want Adam to feel safe to feel and express whatever he needs. To help Adam, I started talking about his dad at the dinner table, and he was very attentive.”Daddy is funny isn’t he, Adam,” I said. He looked me straight in the eye and smiled. “Yes both mom and dad really love you.” I kept talking about love while drawing raindrops and animals with Adam at the table after dinner.

At the end of the evening when everyone was gone, Adam looked in my face; his eyes regained their sparkle for me. Then, he leaned in to give me a kiss. We went through our usual wind-down routine in our quiet house — a shower, teeth-brushing, and I’ve helped Adam become more independent doing these basic things. He climbed into bed merrily in his p.j’s with the dogs on them, carrying a book on How To Draw Insects.

“Mockingbird,” he asked as he burrowed himself under the duvet. It’s a song I’ve been singing to him since he was a toddler. I turned off the lights, snuggled alongside him and started to sing softly.

He didn’t tell me to go away.

The Adam “Rating Scale”

Filed Under (Autism and Intelligence, Autism and Learning, Autism Spectrum and Diagnosis, Behaviours, Communication, Development) by Estee on 16-04-2012

I’m in the process of completing forms. Adam was diagnosed with autism at eighteen months of age. Now that he’s ten, I’ve been re-reading files and reports from clinicians and teachers over the years. We’ve never had a formal IEP because he’s not in public school. Instead, I’m creating a comprehensive history of Adam. I’m also making it current, adding samples of his work along with new reports. I’m calling it Adam’s Ability Binder. It not only will list Adam’s challenges, but will focus more on his abilities as a means to serving him well. Ideally, it will address his ability and disparity of skills — where he is advanced and where his disability makes life more challenging. When it is done, I’m going to find a way to ask Adam what he likes the most and add that to the binder. Right now, I’m combing through years of typed conversations to include and add to this list.

My intention is that it becomes Adam’s living document that goes with him, and to which he can contribute as he grows older. We have no system which understands autism comprehensively, let alone the nuance of every autistic individual. I am trying to create that for Adam and I’m trying to work within the system we have.

I’ve been going through these “Autism Rating Scales” again. They took me three hours to complete. In some of the line I couldn’t stop myself from writing “that is a silly question.” Or “this is a biased question,” when refering to whether my child does “strange things.” I don’t think the things Adam does are “strange.” I know him to be a normal autistic person, for lack of better terminology.

Here were but some of my pet peeves about the questions:

How can we tell if a child is “laughing inappropriately” if they cannot tell us why they are laughing? Laughing and giggling can also be a sign of stress. What if a child’s autism doesn’t let them respond consistently? Adam can sometimes draw with great focus and other times he can barely seem to hold a crayon. Sometimes he speaks full sentences and other times he can’t utter a word. Talking about “shared interests” comes with great patience from a skilled communication partner, and Adam may reveal it verbally or typing, but not yet all of the time.

When completing the Vineland-II, BASC-2, GARS-2, ARS, or Conners 3, it’s so easy for me to notice what’s missing from these “scales.” I sigh and mumble through them, and realize I’ve got my own summaries to add. Many of the questions are also about friends. Adam seems aware of his difference, and I’ve learned this when he has typed about it. I also know Adam to avoid situations where he is aware of his difference or think he might fail. I’ve seen Adam approach a group of children to join in, then stops and waits on the sidelines because he doesn’t know how to “get in.” Recently when another child expressed pity towards him because he is autistic, Adam stopped jumping and smiling. After standing on the periphery of children, not sure of how to join them, he gives up and goes back to playing on his own. Sometimes he doesn’t know the rules of the game and can’t play when he is invited. Is this “not interested in other children?” Of course it isn’t. His inability to communicate like others, however, and in keeping up with the rapid rhythm of activity and conversation makes having friends challenging. Still, Adam has made leaps this year — wanting to join in with other children, and his increase in spoken language.

Thankfully the person evaluating Adam has recognized the limitations of these scales and the complexity of him. It is important to have your assessors understand this and urge them to observe in every setting possible. It’s important to know what lens we are assessing the autistic child through. Some of them can distort the image.

Now my back hurts from sitting at my desk too long. I’ll be back at it tomorrow, hoping to tip the scales in a fair direction.

The First Ten Years

Filed Under (Acceptance, Adam) by Estee on 11-04-2012

It was like yesterday. I went into labour and Adam arrived nine hours later. After he was born, he cried a lot and his eyes darted around the room. My narrative of Adam’s life in part goes like this: He was born and he was uncomfortable in this world. It was as if he already understood the painstaking road ahead.

I want to commend him and all that he has managed on his own — from the stares, to the people who have talked in front of him (all of us tend to do that until it dawns on us that we shouldn’t; we can be parents of typical kids and do it too). Despite his differences and challenges — he is neurologically complex unlike some other autistic kids — Adam has made friends in his own way. He will run up to someone and want his “squish” or “spin me higher.” He has a way of charming us to provide what he wants and needs. That look crosses over his face when he meets denial; his eyes begin to smile and glimmer like Marilyn Monroe on the silver screen. We succumb and receive our thank yous in many forms.

He has worked hard. He has struggled with motor planning and still finds it hard to hold a pencil, even a weighted one, among many of his challenges. For those moments he has been able to focus in the way we like to see, he has shown us what he can do — from typing, research projects, to his love of music, dance and YouTube. He is becoming a master of computer games, climbing, and of course, the trampoline. Aside from the times he needs some space from our demands, Adam has engaged us all.

I hope I can convey his beauty and loving nature on this blog. It is in honour of him as well as my message that he, as an autistic person, has been able to enamour us. It hasn’t been the other way around. Sure, many of us thought we had to engage him. We’ve taunted him with goodies and rewards to “respond” in a typical way as “proof” that he understands. Still, he’s in control. He has been all along. He has had to manage many of us “Typicals” in the way we speak, treat and regard him. Most of us don’t even notice how he’s able to do that.

As I create a plan for Adam which he will contribute to as he gets older, I think of everything Adam is, not what he should be. For ten years, I’ve heard more about his deficits and inconsitencies from teachers and professionals, and I’ve struggled with this like swimming against a strong tide. In all fairness to the wonderful people who have helped us on our journey, we all tend to focus on the gaps. Every parent wants their child to achieve. Every teacher strives to help a child become independent. It is our way of protecting and preparing them from and for a harsh world. I always need to come back to Adam and what he can do, or else I fear what may become of us. What of his autistic-ness has been consistent and is the message of how he needs to learn and be in the world? Once I view Adam as a consistent, whole being, I can see him.

Since he was eleven months old, Adam could decode or read words. He has been in love with books. The world, to use Adam’s own reference during a walk last week, may just be a series of “catacombs” that he is compelled to explore. It also causes him much anxiety. Be it his environments or knowledge itself, (see picture of Adam reading the dictionary), Adam is scaffolding and accumulating his knowledge, perhaps furiously, in neat boxes, in his very own and unique way. It may be one of his many contributions to us. There is value to how he learns, sees and thinks, and also in how he needs to navigate. I for one want to keep learning all about it. I want to keep “seeing” and supporting him despite all the veils that flutter in front of my eyes now and again, and that threaten to impede my view — many of my own making.

I look forward to the next ten years; our bumpy journey, joys and all.

Catacombs

Filed Under (Anxiety, Autism and Intelligence, Autism and Learning, Behaviours, Movement Disturbance, Obsessions, Safety, Transitions, Wandering) by Estee on 07-04-2012

Yesterday Adam and I had a jog, a long walk and a trip to his favorite playground apparatus, a spiderweb made out of rope which he can climb through.

He’s particularly enamoured with this piece of equipment as he can climb and nudge his way through the holes in the rope that make it a “web.” As I watch him, he’s polite to the other kids, waiting for them to move aside, or trying not to get in their way. There’s an eager route happening that I can see he needs to complete. I watch his face and imagine the cogs churning and the patterns he might be making as he moves so quickly and gracefully, if not earnestly. I imagine math going on in his head as he figures out his route. He doesn’t need to hesitate, like the other children, to think of where his foot should go lest he fall a few feet down to the ground. Funny because Adam will sometimes hesitate just walking down a hall. He has mastered this web.

After that, we went on our long walk. As we passed an impressive Catholic school in the area, Adam spotted a path. I began to feel his body tensing as he pulled me towards it. I let go of his hand so he didn’t have to feel that I might say no. With the couple of times he bolted and his need to explore every door — “door is a question” he once typed — he seems to be afraid that someone will tell him that we can’t go through every door, so he pulls at our hands. This led to some tantrums and bolting last summer when we said he couldn’t go through many of those doors. He just couldn’t stop himself.

I felt the tension again and I wanted to see what would happen if I let go. His brow furrowed; he was serious, but he walked with me and I knew full well he didn’t want to be without me. He didn’t want to become lost. I took deep breaths and spoke softly, because he “absorbs” my feelings, but still, I was at the ready in case he got that eager look in his eye and wanted to run.

As we walked side by side he began to say “catacombs…. catacombs.” Adam is not being taught those words. Let’s just say, he’s got a lot more ability than most people can see, and leave that for now. The point is, like much “autistic language” I’ve seen and heard, he appropriated a word he learned on his own, somewhere, to the paths he was exploring.

I was sort of glad that the forested path came full circle. I didn’t want to stop him and I considered where-ever we ended up, we could take a cab home. Or at some point, I would be able to tell Adam that we had to turn around, and see how that went. This is going much much better now. Adam is less stressed when I explain it’s time to turn around when my voice is soft and I give him warning.

Exploring Adam’s “catacombs” with him can be fun, although I’ll admit that I often have my own agenda and I urge him to follow me. I know very well that I must explore his, with him. We may not be able to explore every door, and I know that his environments are very important to him. Yesterday, he gave me yet another insight into the confusing world, which he is so eager to see… and master.

Unlocking My Self

Filed Under (Acceptance, Parenting) by Estee on 02-04-2012

For Autism “Awareness” Day (in addition to my post below), my article Unlocking My Self is now up at Holland Blooview and for BLOOM.

Please Don’t Stop The Music

Filed Under (Acceptance) by Estee on 02-04-2012

It’s “Autism Awareness Day.” I’m not sure I like all the “awareness” events that still grieve the autistic person, “locked inside” a body. Every day is an autism awareness event in our lives, and it can be rather tiring. It seems to take a huge percentage of our time justifying our right to be in school, regarded as intelligent, included in programs, or to be viewed just as any other person would want to be regarded and treated. It’s difficult to be included and accommodated without people wanting Adam to become more “normal.” It’s hard to find a seat at the table.

When I stood with my favorite autism moms at Adam’s school the other day, their children still toddlers, I witnessed, how dreary language and media representation effects our view of ourselves as well as our children. I’ve always felt that the way people make us feel for being different (aka “abnormal” and in need of fixing) makes life harder, not easier. It amazes me how parents lose faith so early on in the autism journey, and while it can be tiring with those sleepless nights, we have to learn that we are “normal” or “quirky” in our own right. This should be a day of celebration and acceptance. I find laughing at our autistic quirks in this house, with respect, helps us live more happily. Laughter enables us to accept ourselves.

At Adam’s school, they play musical chairs. You know how musical chairs goes — the music goes on, then it stops suddenly so the kids have to sit in the available chairs as quickly as possible. There is always one less chair than there is a child…go figure. Whomever doesn’t get a chair, loses. I’ll bet this game in particular is difficult for autistic kids who can’t catch the rhythm of social interaction and games like this one. Temple Grandin describes a scene like this when she’s watching a circle of people talking. She’s trying to participate but she describes it like trying to jump in on a game of Double Dutch (skipping for those who don’t know it). She just can’t get in.

For Adam, we’re still in the turn-taking and sequencing phases, and he’s learning to be patient while waiting for a turn. Yet he loves to dance with people! The music plays, he probably starts to dance or follows everyone in the circle, then probably doesn’t understand why he doesn’t get a chair. I’m not there, you see. But I can just imagine.

Adam gets upset when they turn off the music. I can picture him dancing and jumping with that ecstatic smile on his face. He’s probably thinking “What the ____? Put that music back on!”

Some days it’s hard to be an autism blogger or purporting a belief in autistic people, more than it is just to live in the moment and dance with Adam. He wants to dance with us. Please don’t pull away his chair at the table. He deserves a place there. Please don’t stop the music.

For viewing:

Here’s a video choice from John Michael Carly of GRASP who spoke at the Colombia University Centre for Bioethics last year.

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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.