Reflections On Our First Decade

Filed Under (Acceptance, Adam, Advocacy, autism, Autism and Employment, Autism and Intelligence, Autism and Learning, Autism Theories, Autistic Self Advocacy, Discrimination, Estee, Ethics, Family, Joy, Single Parenthood) by Estee on 11-01-2012

Tonight Adam asked to be carried to his bed. “Carry!” he implores. He has a determined look in his eye. Usually, he climbs into my lap and expects me to carry him to his bed. So I let him again, and cradled him in my arms, trying not to hit his extremities in the doorway.

“Adam, you are getting too big for this now,” I say, my neck and back feeling strained. I carry him into his bedroom and plunk his heavy body on the soft bed.

“I’m not a caterpillar anymore!” he says melodically, and smiles.

“That’s right Adam!”I am pleasantly surprised. It is a rare lucid statement. With all his movements and chants, for the unexperienced, it is difficult to believe Adam is understanding, or paying attention to, many things. Yet I’ve always known he does, even on the days I get frustrated when he can’t respond.

There is a story that Adam The Caterpillar and the Polliwog by Jack Kent. He is using the line from that story and I know he has associated my discussions about him becoming a big boy to the story. “You are not a caterpillar anymore. You are a butterfly!” Adam lifts his head from his pillow. With a big smile, he plants a kiss on my lips and lies back down, contented. I turn out the lights and say goodnight.

I’ve been thinking a lot about Adam and his growth over the past year. Over the New Year, I’ve been thinking how this will be Adam’s first complete decade, and my first decade as a mom. I simply cannot believe that it’s been that long as I remember our journey with autism and with each other.

Adam was diagnosed with autism at 19 months of age and I began writing privately in coffee shops about our experiences when Adam spent a couple of hours in pre-school. I started The Joy of Autism blog and running the events of The Autism Acceptance Project when Adam was three years old. Reaction to my blog and title of the events (The Joy of Autism: Redefining Ability of Quality of Life) were met with both applause and contempt. Today, we read about the joy of autism and parenting an autistic child much more often. Then, parents who were struggling with challenging behaviours and expectations of a cure, challenged me. What did I know?! questioned many parents of slightly older autistic children who were being phased out of services. Wait until your autistic child grows up, then you’ll be in big trouble; you’ll see what we are going through. He won’t be cute forever! I suppose we’ve now reached that same stage. While Adam can still be cute, he is quickly becoming a pre-teen.

In the past decade, we have struggled with acceptance, understanding from others, and in finding a great education. We deal with stigma, and having to justify why we behave as we do. As parents, we are sometimes pitied or called heroes. It’s hard to be a normal parent in the “outside world,” even though autism is our normal. Having to justify our children, and their right, need, and desire to be included can be exhausting if not downright heart-breaking. We keep going out there every day as we brush disappointment off our weary selves. I suppose this is brave.

I also realize, that as bloggers, writers, and advocates, everyone has an opinion. When there is no one cause for autism that science can find, the speculation gets polemic. The nexus of contention seems to be the nature of autistic being and intelligence; is autism a natural, “alternative” way to be human, or is it a defect of the human condition? Of course, I believe it is what it is, although throughout the years I’ve always questioned my own thinking. I still come back to the value of human diversity. Whatever the reason or the cause, I value Adam for who and what he is, how he thinks. I also recognize and try to assist his challenges. I cannot call him a defect. He is whole, loving, able, with his disability. I can’t think of my life without him in it. He requires the extra effort of all to understand his differences in order to enable him. Being constantly challenged for my beliefs has been exhausting and emotional at times. The blessing of this first decade has been the deeper recognition and understanding of the values I held instinctively, and early on.

In the past decade of writing and talking about Adam and autism, I’ve been torn between sharing parts of our experience and our privacy. In the hopes of helping Adam’s future, I’ve seriously thought about whether or not to close the blog, especially since Adam’s first decade also included a divorce — a challenge for any child, and an extra challenge for Adam. I decided that not only does writing about experience help me as his mother, but that sharing is a gift we both give and receive. I was helped by the writing and sharing of other autistic people and parents. I don’t want to fear the sharing, although I’m continually challenged by this. Of course, it is my duty to protect Adam and his privacy, so I believe that every parent must choose our stories carefully. I’ve decided to continue writing.

I also can’t help thinking about the parents who had autistic children ten years before us. Many were the parents in Canada who argued for ABA to be covered as medically necessary treatment (the political argument still exists). Some parents found out about Dr. Lovaas in L.A. and even moved down with their children for treatment, and I may have done the same thing if Adam had been born earlier — maybe not. Adam was born in 2002. In 1992, ABA was turned to as the hope for the education and life skills training for autistic children. It was believed that ABA would be the way to shape the child’s behaviour and normalize them, in time for school. It seemed much more humane and reasonable than “holding therapy.”

The window in which to do this, they were told (and we were too) was five to six years of age. If a child could not talk or learn normally by then, the window of opportunity would close. The “early diagnosis is key,” notice, is also used for cancer, and I know from personal experience that yes, better to get a cancer early (another part of our past decade). Science, parents, autistic people, however, have proven that there is no such thing as lost opportunity. Autistic people need continued life-long learning. I like to think of that all of us require continued training throughout our lives to put this in perspective.

New methods and teaching approaches have been explored and integrated into many classrooms. ABA therapy has, to some extent, integrated different therapies into their own practice. By “operationalizing” these other methods and taking “data” it seems to have been rebranded as “Positive Behavioural Therapy” or “Support. While there is still controversy there because the therapy still doesn’t fully address the abilities and the nature of autistic perception and intelligence, one could view it as a step forward.

It is also difficult to let go of labels. Political policies are built on them. They are made for autistic people largely by non autistic people. Definitions and systems must be defined in policy, and this has been difficult for autistic people because their issues have not fully been acknowledged. So we must be cautious not to lose sight of the progress have made in the science regarding autistic ability, perception and intelligence. We must continue to work to answer the question on how we can best educate and address an autistic person’s needs, and how an autistic person can participate in society as they are. The dyslexic community had to learn and now so must we.

Ten years before ABA took hold in Canada, in 1982, Lorna Wing wrote her pivotal paper reviving the work of Hans Asperger and spotlighting Aspergers sydrome in her paper, Aspergers Syndrome: A Clinical Account. It was ten years after that paper that Autism Spectrum Disorder label and definition of the “triad of impairments” made it into the DSM IV. In thinking about decades, I thought back to 1972 when Ontario’s last mental institution was shut down. It freaks me out to think that Adam’s life could have been so very different thirty or more decades ago. He would have been even more segregated than he is today.

As I measure the decades against autism treatment, and treatment of autistic people, I see that in 2012, we’re learning more every day. We do so even in a perilous time when “designer babies” arguably threaten the continued existence of people with disabilities. Many communities like ours and the Down syndrome community grieve the loss of others “like” them as a loss of community. We’ve launched autism acceptance movement, akin to other civil rights movements, for the equal and fair regard of autistic people in our society. It is still a nascent movement of which most people are unaware. We have not accomplished full inclusion and accommodation. We still have not raised enough awareness.

As I think to 2022, when Adam will be twenty years old, I hope for the ability for Adam to continue his education and the welcoming of his assistants not because he is unable, but because he can be enabled with them. I want for his participation in his own life planning, pre-college/university prep, and vocational training that will be unique to the needs of him and others like him. I think of his life, like mine, as a continual learning curve — certainly not ending at the age of twenty one. I watch and read the other parents and autistic individuals ten years ahead of us, and wish to thank them for the paths they are forging.

I look ahead to the next couple of decades. There was a time I fretted about it until I realized that time is relative and all people develop as they should. I worried about Adam’s future and where he would live. Yet, I intend to hang in there with him, come what may. I had some very difficult moments after my divorce and raising Adam here alone and this is when my worries were at an all-time high. On one very low day, a calm and quiet thought suddenly entered my head, and it was filled with love. While autism may have brought me some of my greatest challenges, it has also bestowed my greatest gift.

I love Adam more than words. He has always been my pride and joy. I know that it is my duty to assist him, and to find others to assist him along the way who will help him become the man he is meant to be.

Maybe I just can’t believe he’s going to be ten years old this year. I turned on an old video when he was first diagnosed. He is twenty months and has the same smile, the same boundless energy. He is the same boy in a growing, lanky body. He is a butterfly.

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.

A Breeze of Good Feelings

Filed Under (Acceptance, Adam, Art, Joy) by Estee on 14-06-2011


I’m going to ramble about good feelings. Following the shock of last week — hearing that Adam’s class was going to be dismantled — I felt like I was in another hurricane. That short story ended quickly, though, as the school came through to accommodate Adam for next year. They too understood the tumult he has been through. For me, it was a wake up call to our future. It’s not that we don’t know something’s coming, right? It’s interesting how something has to happen to get us to the next level. The occurrence reminded me that it’s time to leave the past behind, and get back to learning the next phase of advocating for Adam’s needs. It’s also time for him to learn that he’s autistic and what’s involved in that so he can begin advocating for himself. It’s not that I don’t think that he knows he’s different. What he needs is a toolbox of self confidence and skills to be able to stand up to the people I stand up to now as a neurotypical person.

It’s another reason why I love Autistic Pride Day which is on June 18th. I imagine what positive messages we can give to our children while they are growing up (for there are otherwise too few) — that difference is neither good nor bad, it just is. We are all unique individuals with differing needs and strengths. It’s important to be proud of ourselves, even if we have our challenges. We are proud to be autistic, or family members of autistic people. I would like to help empower and enable Adam in this way. A walk next year (as there is little time to prepare this year), would be a wonderful, peaceful way to walk proud.

Change has blown in in so many ways. It is because of times like the school news that I need to celebrate Adam, myself and the people we love. We are losing his aide of seven years and are welcoming a new one into our lives. We’ve hired a new male aide worker on weekends who I hope will become a part of Adam’s life. His team is shape-shifting and I see Adam soon sitting around the table for part of our meetings and later, for all of them as he tells us what he wants to do with his life and how we can best support him. Sometimes all of these changes literally knock me off my feet they are so exhausting, which is why I take as much time as I can to beam. There is love all around and I don’t take it for granted. There is a person in our lives and lots of music and good feelings all around. I no longer feel I’m swimming way off in the deep ocean. I believe I am arriving at shore — or the ship I’ve been building is at least sturdy enough to lead us there.

The really simple things make me extremely happy. The pummels and disappointments — whether they be from our past or about school — make these moments even more special. I can tell we are settling as I can’t wait for Adam to come home from school. I used to be so tired and worried about Adam’s distress. Just last year he was spasming so much he needed an EEG. Now, he saunters into the house with his lunch bag, flicks off his shoes and runs down the hall to the kitchen where his snack awaits. After reminding him to wash his hands, he perches himself at the counter and noshes at red peppers or fruit. If that’s not enough, he’ll ask (lately) for popcorn with vinegar (yes, that’s right). He’ll get the popcorn himself and after learning that pressing too many buttons on the microwave actually locks it, he turns to me and asks, “Popcorn, puweeze.” He is not quite satisfied until I open the package and turn on the microwave. Then, he’ll go into the pantry and grap the large plastic jug of white vinegar. “Vinegar, puwezze.” He hands over the heavy jug so I can pour it on top (yep) on top. He moves back to the counter stool and gets the popcorn from the bottom of the bowl first so it’s soaked, and chews on one piece at a time

I can also tell we are settling by our routines. Adam nestles into my arm at the end of each day while I watch Peter Mansbridge on The National. Sorry, Peter, but you put my son nicely to sleep. Adam his happy to watch with me quietly for a while. Then his eyes begin fall shut slowly and when he’s breathing deeply, I carry him to his bed, even though he keeps getting heavier. As I pull the baby blue blanket right up to his chin, he is grinning with his eyes tightly closed. “Goodnight my sweetheart,” I say. I kiss him and leave the room, remembering myself at his age, just as happy when my mother or father did the same.

I feel like Jodie Foster in Little Man Tate. Sure, we are not as verbally articulate, but we are no less expressive. We understand each other. We have our many ways. Like them, Adam and I lie around and watch the clouds together; and I hold him tight when the lights are low and the house is quiet except for the whir of traffic outside.

Without disturbing too much privacy, I think there are only a few things I can share as Adam’s ally — simply because I need to express these good times — like his love of music, for one. Adam also has some cool dance moves. This is a combination of raising his arms up in the air to swaying them with the rest of his body side to side, to a full on rock on jump and hand flap — and let’s not forget his electric smile. Adam is increasingly adept at piano and tries his hand at guitar (I think he prefers guitar — no lessons involved). There is no question that he has artistic ability (see photo).

This could just be becoming the happiest time in our lives. That’s why the news of last week was so upsetting because it takes so long to find balance and when there are additional challenges with a child, the last thing one wants is more. I know there are more challenges ahead, but today I decide to take in the light breeze.

I was once told when Adam was first diagnosed that this was going to be a “marathon, not a sprint.” Well, after a few years now, I don’t just think it’s a marathon…it’s Ironman. All of the work is really important, especially in a world that still does not fully understand and accept autism, but it’s not everything. It’s not what Adam will remember or what will necessarily trigger his heart. He’s going to remember when I carried him to bed and pulled the blanket under his chin. He’s going to remember lounging out in the yard and watching and naming the clouds with me when I’m gone. I think the work that we do goes without saying, but it’s also important to stop and listen to the music, to experience love. It’s everything.

Early Mother’s Day Reflection for Autism Moms

Filed Under (Joy, Parenting) by Estee on 04-05-2011

As an only child and single mother to an autistic son, I have to be honest that I sometimes find myself grumbling about holidays. I know it sounds very cynical of me, but hear me out. Another hallmark holiday can make me feel left out. Our kids are supposed to make us cards, buy us flowers, gifts and tell us how wonderful we are. Usually, there is a husband to make the kids abide if the kids are too busy playing Xbox. I remember fondly making those cards and telling my mom how much (and still do) love and appreciate her. In my case, my dad didn’t always have to remind me. Adam can’t make me a card; at least not without the help of another person. So, another holiday comes and that’s the pang.

I can’t get rid of the holiday. Millions of people this Sunday will go out and buy flowers, and make their kids make cards for mom and grandma — another fuss. Don’t get me wrong, I think it’s lovely that people want to celebrate their family members. If I had gotten the date right this year, I may have even made a tea for my girlfriends and their mothers. Part of me does it to avoid self-pity. Another part does it because I believe in making celebrations out of just about everything, not necessarily on holidays. This Mother’s Day, I’ll probably visit my mother for coffee with Adam and I know she and my father will give me their good wishes.

As Mother’s Day approaches, I think of the daily moments I share with Adam; how much we’ve been through together and how much I wanted him. I waited until my late thirties to have him. Other’s have forced him to make cards and say “Happy Mother’s Day mummy… I wuv you,” and he repeats it obediently, hands me the card made with construction paper and crayons. Sure, I love the card and keep them in a special box, but I know he doesn’t care about it so much.

Today, he cares about the items he can make on his own volition. He cares about when I am there for him and can comfort him or love him just because. In return, I receive his voluntary hugs and kisses, his laughter, his smile, his pulling me towards him and saying my name. At night as I tuck him into his favorite blanket, he’ll say in his little voice, “don’t go.” In this house, Adam’s affection and his ability to express himself are like daily holidays. If your child has difficulty talking, you’ll understand these actions and the few words as the gifts that moms like us receive. Mother’s Day? I can see Adam laughing inside if he really understood the nuances of being forced to celebrate Mother. I mean, love is love. Period. He knows it well.

For us moms whose children cannot and may not make cards and say I love you this year, don’t despair. I hear you and I’m with you. Be proud of your mothering efforts and happy that we are moms of our wonderful children. I don’t know about you, but I never get the feeling that Adam doesn’t love me. Just because he can’t always express it in words, or as slick as a Hallmark card, I feel ocean waves of love and appreciation every single day.

That’s my Mother’s Day gift to myself, and to you.

Focus On The Positive

Filed Under (Acceptance, autism, Inspiration, Joy) by Estee on 18-04-2011

Huh. I just wrote that title quickly and then Monty Python’s Always Look on the Bright Side of Life plays in my head and makes me laugh. It’s so cheesy, it’s perfect. Focusing on the positive means you have to feel things, even uncomfortable things. We can screw up, then click our heals and sing a silly tune. So what? So you feel bad one day about something, be it yourself, your “fate,” your kid’s autism. If we didn’t feel we wouldn’t be able to enjoy the richness of life. I have my down days and my up ones and keep learning that staying with the positive is a continued discipline that has to be practiced day in and day out. If I worry about Adam one day, I always know that the next day I’ll think differently because I’ve made that choice. I believe in that kind of life view and that it takes some effort to, well, think positive. That’s it. It sounds easy. No grass is greener than the kind we grow in our heads.

On to my point. Today I’ll share some nice comments in the May 2011 issue of Today’s Parent by readers who read The Joy of Autism article in April. It was the fertilizer I needed to click my barefooted heals, as if the sun was shining on a warm spring day, in thick long grass.

Count Your Blessings

Re: “The Joy of Autism” (March). I always like to commend magazines that include articles on autism. I feel that the more awareness there is, the easier it is for parents to begin to accept and involve their child with autism in the community. As a senior IBI (intensive behavioural intervention) therapist, I develop and implement programming for children with autism and work closely with families to help develop skills. I must admit that I found this article refreshing with its focus on the joys that children with autism often offer. Parents can become so focused on making gains that they forget to enjoy all the little moments of joy. As a parent of three children, I always try to encourage the families I work with to enjoy their child just as they would any other child, and to embrace those little moments of joy that children with autism so often provide. — Rebecca Grezegorczyk, St. Thomas, Ontario.

Fabulous! I raise not one but two boys with autism and I can attest to the fact that finding “the joy” can often seem like a futile and frankly impossible feat. However, I too feel, and always have, that my boys’ state of being should be seen as a blessing. I honestly believe that people living with autism have a great deal to teach the “typical” world. T’is the human experience magnified, is it not? — Marlowe K, via Todaysparent.com.

The Path of Least Resistance

Filed Under (Joy, Parenting, Single Parenthood) by Estee on 06-04-2011

I’m a horrible mother. This thought entered my mind early Monday morning. Adam left for school. I leaned down and he smiled at me and kissed me goodbye, puckering his blushed lips, looking into my eyes. “Don’t forget to carry your lunch bag,” I urged, trying to teach him to become as independent and responsible for himself as possible. He grabbed the blue handle brusqley and walked out the front door in his spring jacket. At nearly nine years of age, he looks like a little man with a miniature brief case. He turns around, revealing a glimpse of soft skin. “I wuv you mummy, yes. B-bye.” I closed the door and headed to the window to wave the way I always do. Adam looked up at me as the car pulled away.

Adam’s birthday was a week away — a few days from now as I write this. It was March Break a couple of weeks ago and he was with his dad. We alternate that holiday every year and it was my time to do my own thing. Am I supposed to have fun? Am I supposed to fall in love again and rebuild my life? It’s so different being a single mother.

I panic, noting the date in my head. Which friends do I invite? Adam doesn’t get invited to very many play dates. Instead, we do programs and school. During programs he at least receives the attention and assistance he needs. There is structure. At least he is happy, but I’m missing him when he is in those programs. I still wish he had friends who came over to visit him in his own home. Adam and I are so dependent on each other for friendship.

Then there is our issue these days of him being terrified going to new homes. We have to work on that the way I said we would a few months ago. We have to visit friends on weekends, for ten minutes or so at a time, at least that’s my plan. We could work our way up to more time and voilà, Adam will be used to new homes. Why haven’t we done more of it? Parenting is tough work, period. It’s also important to enjoy our children. I think it has to be stated even more so when there is such pressure for us parents to be super-charged teachers or “warrior moms (and dads).” We need more balance in terms of what our roles should be and the supports we and our children deserve.

Right, there’s the PECS I have to print out. The team told me I have to label more around the house — they give me a lot of tasks.  More schedules. Safety rules to teach, the phone skills he needs to learn now. I’ve managed to at least put the PECS on the phone. It’s waiting to be programmed. There was that four page instruction list of OT recommendations for evenings in order to keep Adam organized and ready him for bed. There is the homework we do — at least I’m good at  that, piano practice. Adam is exhausted by the end of a long school day and likes to entertain himself on YouTube for a while. But we have so much work to do….

I’m exhausted by all this planning and coordinating of people. I’m guilty that I’m exhausted, some days, and wonder if I’m a good enough mom. I should be teaching him more on the iPad, his Vanguard — crap, I forgot I have to do that too and program it. Then there’s typing, reading books and comprehension questions I have to ask him every day. Reading an article in the Globe & Mail yesterday, Autism: Tracking a Decade of Treatments, and Dr. Cummings states that treatment includes looking “at the role of parents in working with their kids at home.” Holy *&^6. I’ve been doing this for nearly a decade and you want to lay on more?

The reality is, Adam comes home from school, eats his snack, likes to hang around me leisurely in my office or in the kitchen. We do homework, a bit of music and music comes easily to us. He sits beside me and we play duets and it feels like the path of least resistance when we are simply relaxed, doing stuff together. Later, has a shower and winds down for bed. I mean, how much time is there really in the day to be super autie mom? Heck, forget the autie part. There are some moms who home school and nurture genius. Maybe I’m just not one of them. Life has changed.

I try my best, even if some days I feel my best isn’t good enough. They are moms who run those PECS off every day at their computers. They are moms who crack the whip so their kids learn to type and publish books. I try to just keep things moving, negotiating with people in the background, but who are in the foreground of Adam’s life. For me, that’s a full time job right now. I’d guess that for all of us it is.

It hits me. I’m learning my limitations as a mother and as the person I am. I’m learning what I need to do and how to do it so that there is abudance of happiness, not stress, in my home. My laundry list of worries is part of my awakening.

I’m really good at the most important part of mothering Adam. That is, loving him. Lately he calls my name a whole lot more. So I guess he knows it. At least I know it too.

Party time.

“I Had A Feeling That I Belonged”

Filed Under (Family, Inspiration, Joy, Single Parenthood) by Estee on 07-02-2011

Everyone who goes through a divorce will attest, after a significant chunk of time, you can feel cast out, a little lost.

It will be a year since Adam and I moved into our new home on February 14, ironically, Valentine’s Day. As I prepared the house for him to move in, I purchased a sign that I placed on my mantel: “Friends and Family Gather Here.” I knew what was important to me. I knew I wanted to finally build my own place where Adam and I would always belong. This coming Valentine’s Day, although I hate the Hallmark cheese, I’ve got something really special to commemorate: creating love and a warm place to belong. This is a celebration.

People say that you have to live with intention. Well, I guess I did that. I make lists, I put my intentions out there a lot. I wanted to build tranquility, beauty and a happy home for Adam. After some difficult transitioning in the first few months (you can read those posts from a year ago), Adam adjusted. A bitter winter unfurled into spring and summer. Our friends came. Then, my big family on my mother’s side. It has meant so much to me, and I know, for Adam who beams when he sees people here.

Before I got married, I used to play in bands, work in art, write (I’ve always written) and paint. I’m back at it. Adam loves it. Our home is filled with simplicity and lots of music. As I learn to play the guitar again, he strums while I learn the chords. I’ve also taken up my piano playing and Adam played improvised with me for over a half hour last week, proud that he could create something with me. It was just the two of us in the basement, communicating in our way.

I’ve just learned how to play Fast Car by Tracy Chapman on the guitar. I love this song about clawing one’s way to a better life. Belonging is a big theme in my life. Ironically, it’s also a big issue for disabled people.

“Me myself I got nothing to prove.”

At What Point?

Filed Under (Acceptance, Inclusion, Joy, Research) by Estee on 14-11-2010

At what point do we stop participating in research studies? I think about this as I receive another request to do so with Adam. We’ve received many of these notices and requests over the years to participate in one research study or another — none of them very appealing to me.

Adam is eight. He began his life as any other infant and toddler. Then suddenly, at the age of 19 months, before he was two (!), he was diagnosed as autistic. Everything at that point changed in our family life, although Adam had never changed. Our views of him had changed by virtue of a label, a screen through which we now saw him. We spent time in doctor’s offices, with diagnosticians and therapists galore. Life has been nothing but a stream of experts and research trying to figure him out. As his mother, I’ve accompanied Adam on this journey, and even subjected him to this.

Although I’ve always been so inclined, and this is likely a natural progression for me, I feel as if I’m entering a period of trying to look at myself objectively as his parent and how I need to figure myself out. How have I managed, after all, with autism and the many things that life brings? I am becoming far less anxious about what Adam will be when he grows up to trying to figure out what will make us simply content in the day-to-day. The work we need to do should be less about fixing people than on creating an inclusive, welcoming communities.

After all, life is extremely fragile. The odds of being born are slimmer than we imagine. Nature has a way of aborting the “wrong combinations” of genes. Yet, there are so many fragile people who have usurped the odds and reached the point of being born. Who is to say that autism or any other disability in this sense, then, is “wrong?” Perhaps there is no real genetic “order,” and “normal,” is not one complete genetic sentence. It is a new way of looking at disability. It is a new way I can look at Adam who continues to overcome so many odds. Adam is here. He forced his way into the world and he not only survives — he thrives.

Today I can’t stop thinking about Adam’s quality of life, and what that means for him, not me, although the quality of mine seems to improve everytime I look at Adam and enjoy him. He must be taught, he will grow, and he will develop his own need for independence. No matter how severely disabled one is, the will to be so is strong in all of us, even when we need others to assist us in our daily lives. I’m reluctant to be a part of research studies as they are crafted right now — to subject Adam to batteries of tests and “experts,” even if some of these studies may be valuable. I know there are some disorders that may benefit from studies, although my thoughts are still inconclusive on this. Still, I do not want Adam to view his life as if he is living in a sort-of test tube. I do not want to get angry at people who will view, by virtue of their research role, on-looker and so forth, Adam as a subject or a pathology. Hey, he made it after all. He deserves to be here. Researchers should be throwing rose petals at his feet! (Hmmm, that’s an idea. Celebrate life. Novel.)

So I don’t participate. We don’t need false expectations and I don’t need the pain of prejudice, that is, that subtle suggestion that we should be doing something to change Adam and make him better. I am much more interested in, not the genetic code, those “incomplete genetic sentences,” if you will. I’m interested in book of life we are writing — fragmented to full sentences, idiosyncratic spelling, words, noises and all. We are born to give back to the world, to contribute, and to find the beauty in our lives. As I grow a little older, I no longer see the value in competition, in being the best. I see the necessity of working together in creating a more just world.

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.

Protecting Little Joys

Filed Under (Acceptance, Adam, autism, Autism Theories, Joy, Research) by Estee on 04-10-2010

We have to protect our little joys. I was thinking of this as I was putting Adam down to sleep this evening. As usual, we read Dr. Seuss. He eventually yawned and put his head down on his pillow. It sounds “normal,” I know. Around here, hums, noises, hand-flapping, smiles, and some words (difficult to come by) are our normal. Also “normal” is Adam’s soft hair that I can’t help recounting over and over because he presses his head gently into my face before he drifts off to sleep.

Adam has adapted to his new school which will accommodate his special learning needs. Today, he brought home a Recognition Certificate for his accomplishments — on focusing and “completing daily tasks.” I thought it was a wonderful idea to recognize his accomplishments. I loved it also because Adam was full of smiles when he came home from school today. Thankfully, his cheeks are still so round that when he does so they just get fuller like the moon. Time has not taken them from me yet.

As his parent, I have a right to enjoy Adam’s brief childhood. I’ve been in this autism world for six-and-a-half years now with Adam (he is eight) and I’m always breathtakingly amazed with the copious amounts of information about autism, usually presented in dire terms, that infiltrate parents negatively and make them worry. We worry so much that we blog, enter information on Facebook and Twitter about autism endlessly. Okay, let me speak for myself by hiding behind the “we,” won’t you? If we’re not actively doing that, we at least read so much. Worrying about our children, autistic or not, seems to be part of the parenting job. We all want our children to learn. I am not against research or reading the information. Yet I do think it’s okay for parents to take a break from the autism tornados brewing out there.

Autism doesn’t steal our children. Fear and worry steal precious moments with our kids. It steals our happiness with what is. It might be the reason why I find it difficult or frustrating to read some things these days. We still need more “positive autism” out there.

I cannot think of times more special than these: reading to Adam, watching him smile, being witness to every accomplishment (no matter how minor), and simply putting him to bed, to name a few. Thinking of how quickly this will pass — when he will no longer have the famous cherub cheeks and tiny-voiced giggles, well, I want to know that while there was worry constantly spinning around us, and a race to make Adam “better,” that I really did work on being the calm within the storm. I want look back and know that while I served him well to find the best-suited education, I also took the time with him to just be happy.

I Have A Few Dreams

Filed Under (Joy) by Estee on 23-08-2010

Watching me these days and I think you will find me deep in thought. I’m dreaming, thinking. Not the kind of dreaming where I’m floating (well, okay, sometimes), but the kind that I think is important for all parents of autistic children. Maybe this comes at the right time — right before Adam begins his new school.

Usually when we speak of the future, there is fear in our voices. We believe that there will be fewer services, aides and opportunities once our kids turn twenty-one. This is the case for many people. While we must work on the programs and services that autistic people may need throughout their lifetimes, I also want to think about all that is possible. I believe that the more we do this, the more likely we will achieve the kinds of supports and opportunities for our kids that we fear we will lose.

I dream about riding a bike with Adam. Kristina Chew’s stories about Charlie and her husband James has motivated me to teach Adam how to cycle better (he has a tendency to always be looking where he has been rather than where he is going…a rather ironic notion).

I think about taking Adam around the world, and if not entirely around it or entirely with me, I’d like to think he will see the world in any event. I think of Horseboy and recently the travels of Larry Bissonnette and Tracy Thresh as part of the film Wretches and Jabberers (great title). I think that if we’ve come this far, we can likely go farther both physically as well as mentally. I took Adam to Mexico last year, and lugged him deep down into Mayan caves, and there will be more. Sure, we’ll have to endure some discomfort along the way, some rude comments, leering eyes and possibly some meltdowns with delayed travel and other frustrations, but I consider when the time is right, it will be worth the try. I mean, Adam is already an explorer. He will find every nook, every cranny, every inviting pathway that I, in my perpetual goal-state-of-mind, will miss far too often. Even with the liklihood of some discomfort, I can’t help but wonder if moving around and seeing new things may be the best education of his life, and quite likely, of mine.

I dream about Adam in higher education — be in college or university, exploring what he loves and being assisted if he needs it. So many people delay their entrance also into higher education. So the timing just doesn’t matter. There are many stories of autistic adults in universities right now and thanks to them, it keeps my dream alive.

I dream of Adam having his friends and people he loves around him. He likes people. Although we are addicted to social networking (you can find me everyday twittering and FB’ing and blogging — I’m torn about the whole matter), I had written for the TAAP exhibition in 2007 how technology really assisted the social connections between autistic individuals. Adam also uses the computer (although not yet for that) and he has a friend he goes to school with. I see no reason, as he is helped along the way, why the wouldn’t have people he loves to have around him. The many autistic friends I’ve made along the my journey of learning how to support my autistic child has helped me keep this dream alive.

I was also thinking of the dreams I had for Adam when he was newly diagnosed and a toddler — how I had hoped he could go to a good school, become more independent and begin to communicate. Although he is still challenged on the latter, he communicates far better than he used to. The autistic teenagers and adults who use Assisted and Augmentative Communication have helped keep this dream alive.

I dream of Adam cooking his own food because he seems to enjoy helping me out in the kitchen. Although this is not always possible for all autistic people, for others, it is. Susan Senator and her family write a lot about cooking (or is it that I’m especially alert to Susan’s food postings?). She and her son Nat have helped me keep this dream alive.

I dream of Adam continuously enjoying self-expression. He has shown a particular fondness towards art. Those of you who know my passion for this subject will know that I have many autistic artists to thank and who have kept this dream for Adam’s happiness in self-expression, alive. It would be difficult for me to list everyone here.

I realize that since before I started writing The Joy of Autism blog, I have so many people to be thankful for in helping keeping dreams alive. There are many stories on the web now that weren’t when I began writing in 2005. The daily successes are worth reading every day.

Although Adam is still quite different, he has accomplished so much. As his parent, my dreams for him as well as myself are thriving. I think this is what we most fear as new parents — that the weight of unknown responsibilities will take these dreams and hopes away — not only for our children, but for ourselves. While I have not written the entire list of my dreams here today, I see that dreams, as we adjust our views and expectations of our autistic children, really do come true.

As for Adam, I’m quite certain he’ll have many of his own dreams to share one day.

What are yours?

——–
There are so many autistic people and parents who have helped keep many of my dreams alive that I have not listed here today. I’ve been writing about many of them for a few years now.

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:

Toilet Humour

Filed Under (Humour, Joy) by Estee on 21-06-2010

You have to hand it to kids. Just when I forget to laugh, Adam comes up with something to make me laugh about.

Like all boys his age, the proverbial fart joke is something hilarious. What makes the fart so darn funny? I remember my step-children, now all adults, in the backseat of our Durango farting and laughing. “Whoever smelt it, dealt it!” They would giggle, sounding like hyenas in the back seat between whines and squeals, between farts and trying to pinch and smack each other. Of course I laughed. The child’s giggle is infectious. The fart is eternally funny. It takes pretense back down to the level of human.

I was reminded of all this — what seems like eons ago now — when Adam farted this morning before school. “Oops you farted,” I commented and his giggle, the one he never wants to end, ensued.

I suppose I’m writing this not just because farts are funny, but because such toilet humour does not get lost on Adam — the autistic child who supposedly doesn’t get humour. It seems so incredible to me now these vast generalizations are so not applicable in the autistic people I meet.

While I’m not sure what this really says about me, tell me really if this doesn’t make you laugh. It makes Adam laugh!

Click for fart sounds here.

Jump With Me Higher!

Filed Under (Adam, Joy) by Estee on 15-06-2010

This is the phrase that Adam begs of us when he wants to jump.

Here is a video of Adam that his dad taped which may just put a smile on your face as much as it does mine. This is the kind of exhilaration I think we all need at least once a day!

I haven’t put music to it yet. I was thinking of the song When You’re Smilin’ by Louis Armstrong. Then again, I sort of like it without any music at all.

For What It’s Worth

Filed Under (Adam, Family, Joy, Single Parenthood) by Estee on 13-06-2010

I have to admit that I’m adjusting to my new role, still, as single mother. There are lovely days, like yesterday, when I want to spend my time with Adam. We awaited a thunderstorm that never came, but watched Disney’s Mulan anyway — a movie Adam has not yet seen. Adam is more interested in watching movies from start to finish now that his attention is stronger, his awareness keen. In the “early days,” Adam could only sit still for about ten or so minutes and movies were simply not possible. These are rather nice days, like the time today we spent walking around the Scarborough Bluffs, listening to the waves gently swell upon the shore and watching the geese fly off as elegantly as immaculately set-up dominoes. Adam lead me to the shore-side restaurant and we ate together. I’ll admit that sometimes I miss having someone to share this with us, and then again I cherish every moment now because I have learned that life changes in a moment.

Sometimes we spend our afternoons by the pool and he is content in what I have called his nest (see picture) — I have this chair outside even though the rain is determined to wither the wicker away. He will curl up after a swim and stare at the maple leaves hanging above him in the sunlight, reluctant to depart at my declarations that he must be getting cold and it’s time for a hot shower. No, he prefers to cuddle up and listen to the birds. I don’t blame him — it was the same chair I healed in after surgeries a couple of years ago and I dragged it outside because it’s far better to heal outside than in.

As his treat, I purchased Adam a new nest for his room today so I could put it in the corner where he has come to read his books. I placed it under a canopy I also created for him with twinkling lights when I set up his room in his new house. Like all things these days, it was over-wrapped. We arrived home and I was determined to get this simple task done for him. He helped me lug a bag inside and I asked him to play on his own nearby. He wanted to eat, he wanted to do something else — he wanted my help.

“Adam, mommy doesn’t have any help so you have to be my helper today,” I said. New single-mother talk, I’m thinking. But I’m also thinking how frustrated I am over trying to do everything as quickly as possible, wishing right now, in this moment, that I had someone to do it for me so I can turn to Adam instead.

“Just wait, Adam,” I say with irritated breath, unraveling yards of ties and cardboard with an inappropriate pair of kiddie scissors that were handy. It’s me that I realize I’m telling to wait, though. Adam is doing just fine.

I struggle to carry the big hoop of the chair to the upstairs and set the chair up, going as fast as I can.

“Come see, Adam. Come upstairs,” I am now asking after I just told him to stay put. I imagine my son thinks I’m nuts. He obliges me and goes into the chair and curls into it contentedly reading his series of I Spy phonics books, reminding me that “it’s not a horse; it’s a duck.” His language skills have improved. He talks in more sentences, in particular to tell me everything he sees. I suck in some air and sit on the edge of his bed, enjoying him enjoying the chair. I like to watch Adam happy and calm. Heck, I like to experience myself happy and calm.

I know I have to prepare dinner. The grandparents are coming soon, Adam was searching hi and lo in my kitchen for something, as usual, to eat. It’s a wonder the boy is so slim with all he eats.

I am breathing more calmly thinking that I know I can’t do everything at every moment I want to. I know that something’s gotta give; of some things I must let go at certain moments, and maybe even for life. I am still in that growing phase of learning to be on my own as a parent. Although life isn’t bad, it isn’t the same when you have to do everything yourself. I am learning, still, after two years to be okay with this.

While I get a lot of snuggles from Adam and a lot of kisses too, I realized that I don’t get a lot of “how are you’s?” from anyone, really. I don’t get the “how are you really doing?” kind of caring-talk. I suddenly realize it when Adam pops out of his room and hollers from the top of the stairs, “I wub you!”

“What?” I ask loudly as I am in the kitchen preparing food.

“I wub you mum!” All his words were spoken with force but with the same intonation. Then, I hear him go back into the room and shut the door.

I am stunned. I think Adam is saying thank you for the chair, for his little nest. I think he totally knows how much I love him.

For what it’s worth, I needed that.

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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.