After June…

Filed Under (Autism and Intelligence, Behaviours, Joy, Obsessions, Parenting) by Estee on 22-07-2011

“Ma…. M. Ma… M. ” That’s what Adam said to me last night before bed, before he woke with a fever this morning, no doubt having caught the summer cold. It also happens to be Toronto’s record-breaking heat wave. As I wandered in his room with my early morning “gotta wake up” voice, Adam seemed woozy. I sat on the side of his bed and felt his forehead and body. He felt like an oven. There is not a day when he’s ill that I don’t want to take away all his aches and pains.

Last June was a difficult month of transitions — heck the last three years have been full of them. I find it difficult to write when we are going through something because I have to process a lot of my own emotions and ways of looking at life. My convictions are tested. I’ve learned that I’m glad I have some.

Losing an aide worker of seven years, another change in school, a new camp…Adam demonstrated his distress with an obsession with looking behind every door which lead to bolting. When Adam is anxious, his body twitches and he started to lightly nibble at his arm, and sometimes mine. If I had to describe it in my own words and perspective, it was like Adam had to explore everything as if it was a flight response. I would say that this was all about fear and uncertainty. He will able to tell be better when he is able. He is getting more able as he types more to me.

At first, I did what any other parent would do and asked him to stop. Drawing attention to it made it worse. When Adam goes through a state of anxiety, it is hard for me not to as well…like his illness, I wish I could take it away — all his pain. I wish it would stop. As a single parent, I take on the brunt of it too. My parents are a wonderful support system for me as are the people closest to me, but I take so much on emotionally where Adam is concerned. It is sometimes so overwhelming, and I find myself strewn across my bed when he is asleep wondering how I can go on. I find myself in that futile trap of worrying about the future.

Then something clicks. I think of Adam as a person, as I think of myself as a child — all of my fears and needs. I needed my parents, my mother especially, when I was scared or sick. My dad embraced me the times I least expected, like the break up from my very first boyfriend. My mother took good care of me while my dad taught me some lessons about brushing myself off again after life would offer its hits over and over again. I’ve learned that happiness is not a given. It is a gift. Life is about the struggle so it might as also be about how we handle it. I need to show Adam that I am as strong as he will be. He needs me to be.

There are times when I think it so unfair to bring children into a harsh world. I wonder, as Adam will have to struggle through life the way we all do, why I did this to him. Yet nature was stronger than this logic. I wanted Adam as much as I needed air. I cannot imagine life without Adam and without having this level of love and responsibility in my life. Sure, I’m not unlike everyone else that I also imagine freedom. Yet, now that Adam is here, it’s not as important. This is what I made, and what came my way, and I want to make the very best of it.

When I woke up that morning and everything clicked together again, I remembered that we’ve gotten through a lot of phases. I remembered Adam’s smile, even though he wasn’t smiling that much in June. I remembered how much he loves and needs me and how I am fit for the calling. I may have to lie exhausted, strewn across my bed some days, but I know as long as I’m alive, I’ll get right back up again.

Since his new camp began in early July, the twitching abated as did the nibbles on his arm. I learned not to call attention to it, and to provide him with more soothing activities, while teaching him how to soothe himself. Adam uses a steamroller — purchased through Southpaw Enterprises — as a “squeeze machine” which provides him with the deep pressure he seeks. As several weeks have passed, he is more verbal again and the smile is back, even in his latest group camp photo. I try to rub his back and tell him that I understand when he’s frustrated, and he appreciates it.

Adam’s ways of communicating are so diverse. He has motor planning issues, apraxia and catatonia-like initiation issues. These are not motivational in the least. These are real impairments which need understanding and creativity in order to help Adam become enabled.

When people also think that Adam doesn’t understand, I want to show what he can do on his iPad or computer. He is able to demonstrate his ability to answer, usually one hundred per cent on comprehension exercises, with a multiple choice format. I asked his school to do that last year and he was able to answer questions better this way because it is a visual prompt — he has to choose from one out of three of four possibilities. Another way to see this is through his iPad. There are programs (you can start with “Playwords”) that ask children to pick the right word to match the picture or the verbal prompt — some of the words are getting sophisticated. Adam can zip through that exercise like it is nothing. Yet, give him another format, like fill in the missing letter of a word he knows very well, he has some difficulty. He needs me to model several times, the correct way to complete the exercise. Then he’s flying again.

After a couple of weeks of camp, a video of the end of the day “Flagpole” was sent to me by email. I always wonder why Adam points to his favorite activity being “Flagpole,” everyday. It is an end of day camp activity where the entire camp gathers together. In this video, counselors were demonstrating a dance and all the kids had to follow. It was boring at first to watch the counselors on a roof dancing to warbling electronic music. Then, the camera panned out. Suddenly, a small figure to the bottom right looked familiar from the back. I recognized the beige floppy hat and the lean body. It was my Adam following the dance moves and I could tell he was intently watching. It looked like he was having….fun. I was so happy, I forwarded it to all my friends and family. It was indeed the gift I have learned never to take for granted.

Today Adam sleeps in my bed and he needs me around to take care of him. I’m stuck in the house, but I know he needs me, and he loves me. He has just woken as I get up from the other side of the bed. “Stay here,” he says. Don’t worry, Adam. I’m not going anywhere.

Autistic Girl Taken By Province

Filed Under (Activism, Discrimination, Wandering) by Estee on 08-07-2011

Please read Kristina’s and help return Ayn, an autistic girl to her father. They live in British Columbia. Ayn has been taken because of wandering.

Like Ayn, Adam is nine years old and has bolted. We work so hard to take care of and nuture our children and Foster Care is a devastating option. Ayn’s father Derek fears that Ayn is being drugged to sedate her. It may take up to a year to get Ayn back, states Derek’s laywer. Let me describe why I believe this is discrimination against autistics and their families.

As a parent of an autistic child who clearly is anxious about the world about him, which lends to wandering and other behaviours as I’ve observed, I can think of no other person on this planet more equipped to protect my son than myself and his immediate family. We live in a world that wants to make Adam “normal.” He must go to school, and when he goes, he has to exert more energy than other children just to cope. Because Adam is barely verbal, but otherwise very bright, he cannot speak out. Instead, he reacts.

Our schools, while they attempt to accommodate, simply have not been making the grade. As I’ve researched school options and program options in Ontario, our options are few and far between. Every program seeks to normalize Adam. Precious few wish to spend the time it takes to see his abilities and build upon them.

This requires systemic change and a real listening to and understanding of autistic people. May I ask what schools hire autistic adults to work with autistic children in the classroom or consult on school boards for autism programs? Please, write if you know of one here in Ontario. Instead, non autistic educators believe they know better — they believe they know how to teach autistic people. Even we parents sometimes think we know better. It takes us out of our comfort zone to be patient with an autistic nature. Think about the patience and effort that people like Ayn and Adam have to produce in dealing with ours? Sure the toolbox of methods work here and there, but what is happening to our children, to Derek and Ayn, is not an accommodation. This is what we seek. Understanding, accommodation — not separating us from the people we love.

Every single day, Adam and I face these challenges together. We fight for better services, be they ABA or AAC and for all kinds of acccommodations that help autistic people contribute to society as autistic people. I know we are not always listened to. We are not heard. No one believes it’s a good thing, perhaps, to be autistic. Few want to bother because autism is seen as our contemporary problem. If we can’t fix the problem, we have failed. I say we are failing autistic people.

Must we also live in fear, like Derek, of our children being taken away? As parents, we cannot control everything that our children do, or what happens to them. This is true of all children, not just autistic children. Being autistic seems to be a reason to discriminate against us.

As Adam himself goes through many changes in his life (we’ve been checking off the list of “life’s top stressors”), I’ve been re-reading Temple Grandin’s book Emergence: Labeled Autistic. She describes similar behaviours to Adam like fixations with doors, difficulty with communication or inconsistent communication. She describes her twitches (like Adam’s) as “panic attacks” or anxiety.

While I’m processing a lot of this lately because we are in the midst of this ourselves, I see an urgent need for others to understand us. I see a need to reduce some of the expecations, and for calm environments. I see a need to simplify our lives and let things be sometimes. We are so busy dealing with what our kids must or should do, that I truly believe that this only brings on more stress. Every morning when I wake, I wonder how we can simplify our lives, and wonder why it seems to be ever more complicated. This is the commitment many of us parents of autistic children make every day: to stand by our children and fight for their rights to be included in our society, not taken away or segregated.

Every autistic adult who has written a book discusses their panic at this over-stimulated world we live in. Donna Williams, Temple Grandin are really accessible reads.

Let me take some quotes from Temple’s book that may help describe what I call now the “flight response” of Adam, and perhaps children like Ayn. I know there is no scientific evidence to support my theory yet, but I really suspect that wandering and fleeing in many cases has a lot to do with this anxiety:

“The real world became more unpredictable. I longed for relief, but I was trapped in physical distress. Stress showed in my speech, my actions, my relationship with others.”

Adam’s bolting is associated with doors recently. He is fixated on them and has to check what’s behind each. This has calmed a bit since the end of school, but when he’s anxious it can start up again and this is how he can suddenly disappear, even if we hold his hand — he can slip out so fast. Yes, our house has locks from the inside, like Derek’s. I’ve bought I.D. for him, even a harness (which we have not yet used, but it’s here just in case), and we are looking into a GPS. We have programs and social stories and are trying to help Adam in every way we can with his stress. Re-reading Temple’s own accounts, seems to have re-affirmed my suspicions about Adam, and helps me to consider various options for him to grow and develop as a fulfilled autistic individual:

Then, in chapel one Sunday, I sat on the folding chair, imprisoned by the school’s rules of attendance and bored…bored…bored. When the minister began preaching, I escaped into my inner world of non-stimulation. A world pastel and peaceful. Suddenly, a loud knock intruded upon my inner world. Startled, I looked up and saw the minister rap on the lecturn. “Knock,” he said, “and He will answer.”

Who, I wondered. I sat up straighter.

“I am the door: by me if any man enter in, he shalle be saved (John 10:7.9). The minister stepped out from behind the lecturn and stood in front of the congregation. He said, “Before each of you there is a door opening into heaven. Open it and be saved.” He turned and walked back to the lecturn. “Hymn 306, ‘Bless This House.'”

I barely heard the hymn number. Like many autistic children, everything was literal to me. My mind centered on one thing. Door. A door opening to heaven. A door through which I could pass and be saved! The voices sang out and when I heard the words, “Bless this door that it may prove/Ever open to joy and love,” I knew I had to find that door.

For the next few days I viewed each door as a possible opening to love and joy. The closet door, the bathroom door, the front door, the stable door — all were scrutinized and rejected as the door. Then one day walking back to my room from dinner, I noticed that an addition to our dorm was being constructed…I climbed to the fourth floor….And there was the door! It was a little open door that opened out onto the roof….A feeling of relief flooded over me.

Ayn wandered to a yard with a trampoline. Adam returned to the church from where he escaped…through doors and then back inside them again. While wandering is a very serious issue, are our children seeking their escape? Are they seeking relief? Joy? We must keep our children safe, and I can attest that we are doing everything in our power to do so, like Ayn’s father, Derek, who loves his daughter so very much. But because Ayn is autistic, and perhaps because Derek is on social assistance, she has been taken away from him. Is this some sort of sick cost-saving measure instead of providing the services that Derek and Ayn might need? I can imagine the pain he and Ayn must be feeling right now.

Our society must work so much harder to understand what we as parents face and what autistic people face. We must be able to share our challenges in order to survive them, without fear that our children will be taken from us. I want to be proud of the country I live in in how it supports autistic individuals and families. This incident does not make me proud, or rest easy.

Let me share one more quote from Temple Grandin, lest society think that autistics can’t understand what’s happening to them:

As an autistic child, difficulty in speaking was one of my greatest problems. Although I could understand everything people said, my responses were limited. I’d try, but most of the time no spoken words came. It was similar to stuttering; the words just wouldn’t come out…”

and,

Too many therapists and psychologically-trained people believe that if a child is allowed to indulge his fixations, irreparable harm will result. I do not think this is true in all cases. Fixations can be guided into something constructive. Talking the fixation away can be unwise. Just as a bad habit is expunged only to be replaced by another bad habit, so it is with fixation. But making a positive action out of a fixation can be rewarding.

Maybe Ayn needs that trampoline. Maybe a neighbour can give her that access. Social services should give Ayn back to her father as soon as possible. Parents and autistic people need accommodation and better supports. Foster care will not give Ayn many options and will likely create irreparable damage. Ayn is a person-first and a very lovely little autistic girl, I might add. This is the stuff that makes being a parent of an autistic child, challenging. Let me reiterate: we need understanding and support. Not punishment.

Please sign this petition to help bring Ayn home.

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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.