Living Without Question

Filed Under (Acceptance, Activism, Advocacy, Discrimination) by Estee on 27-04-2010

At Toronto’s Sick Children’s Hospital, we got Adam’s EEG done today, I’m relieved to report. Adam, Grandma and I went together and I’m glad we shall get some information after the few months we’ve had (see previous posts on body jerks/spasms). I’m too tired to write too much at the moment — the sedative was so strong I could not leave Adam’s side all day — but, I do have to say that I get asked a lot of questions about autism when I go to Sick Kids. As I try to soothe my son from a stinging needle in his muscle, I get asked

When was he diagnosed?
How did you know?
How did it look?
Was he detached from you from birth?
Did he line his toys up?

Yada yada.

Please don’t get me wrong. I do not mind answering questions, but I also need to attend to my son. I suppose I should say I do not mind in the appropriate context. I would rather come in and answer any question on another day rather than be asked with Adam listening as if he’s not in the room. Indeed, I did mention something as politely as I could.

It’s a bit of an issue for us parents and for autistic people, this having to answer all of these questions all of the time. Yes, I mean every time we step out the door. Yet others have to understand that part of our willingness to answer such questions is also an attempt to be able to move on in our lives without having to explain ourselves — “us” being parents of autistic people or autistic people themselves.

Sometimes I wonder how far we’ve come in autism “advocacy” — if we are doing more harm than good. If people were not classified in the first place, if a statistical norm was never invented (indeed it was in the nineteenth century by the medical and legal communities in order to deem who might be dangerous in society — all based on possibility, not on facts…read Foucault), if autism and autistic people were not as targetted in the media as “abnormal,” if we were truly a more accepting society of all forms of human, we might not have to live our lives constantly having to answer how we exist and how we came to be.

Isn’t this what we’re aiming for — to live without question?

Changing Terms

Filed Under (Acceptance, Autism and Learning, Critical Disability Studies, Inclusion) by Estee on 23-04-2010

Here in Toronto, I sit on Inclusion Committees. My son has been included in a Montessori classroom but we are going to leave after June. The school gave Adam loads of acceptance and enabled him to bring his aide, his adapted programs, his computer laptop and the like. The school was wonderful in that it was a calm environment that had concrete Montessori materials for him to use.

We had to adapt his program, ourselves, while staying within the structure of the classroom. He worked alongside the other kids and the other kids loved him. He learned how to engage with them and they learned how to engage with him. It was very important at the time we made the move to a Montessori school that Adam be with peers and be able to learn to tolerate them, the noise, and being able to play and learn with others. It was the right move for him. My wish is that schools would provide more education about people with disabilities: how to be more patient, tolerant and accommodating, and there are programs in Toronto that are attempting to achieve such goals. Last night, I attended Inclusion Awards night in Toronto and spoke briefly with The Honourable David Onley (Governor General of Ontario) who is himself disabled.

It was a successful experience and I have to admit, we’ve not had any problems with our school choices like so many other families who must endure the public school system, the IPRC process and assigned E.A’s. In addition, too many “special needs” schools ironically turn down autistic children with behavioural challenges or children like Adam, who have difficulty talking. I understand that that is very difficult, heart-wrenching and it seems we sit on pins and needles waiting to see if we either get the luck of the draw or if we have to endure another heart-wrenching process as I have also been privy to it. This is the most unjust process I can think of as no child should be turned down from any school, let alone the “special needs” schools, but this is the reality right now. Here in Ontario so far, Inclusion is only as successful as the person who is leading the process within the school. A teacher is only as good who understands the child as a unique and whole human being, and is willing to go the extra mile. But for those of us who live through this daily, I’m not saying anything new.

Although I am thankful for our successful early years, our weekends were left struggling to find play-dates from many of these children. Adam always gravitates to the other students with special needs anyway, so it became easier to enroll him in social programs for special needs children. It’s a common story: like attracts like. We feel more comfortable with the people who may understand us and with whom we may understand, and we have to allow room for all of this in the Inclusion process. Adam’s school was a brilliant jumping board for Adam to graduate to the next level, so he will be attending a school that will be able to accommodate his learning needs more appropriate to his new found curiousity. Or so I’m hoping.

Inclusion is nascent in the Toronto community. Still, there are attitudes to hurdle, not to mention a reluctance to invest time, money and training, perhaps because these attitudes are not really up-to-speed. If a question I received yesterday from another parent with a child with another disability was any indication (“is your son violent?” ),one may begin to understand the many general assumptions that exist out in the world about autism and wonder if fear is the biggest barrier to Inclusion. I certainly don’t blame anyone for asking such questions — there are people with many challenges out there. Adam is not violent. He is affable, social (for an autie — he just does it differently but often craves being with others even if he may engage in the “Adam way”), and he wants to learn, even if he struggles with what appears to us like distraction (or should I rephrase that and say it is also us as the parents and teachers who struggle with it because it challenges us to have to learn and see the way our children might?). Adam is talking more now and he was approved for a new device which will enable him to communicate even more. He is bright, able in so many ways. He has a handicap in a world where his style of being is the minority, mind you, but this doesn’t stop him, or me, from moving ahead.

This is the first year I’ve engaged Adam in more special needs programs — for social skills, life-skills and general leisure. He is still Included in a “regular” summer camp, but Adam now needs a different kind of support as he grows into the world. I am very happy for him that he will be gaining these new skills and looking forward to his ability to help others, as I believe it is crucial in life that we all find our areas in which to swagger. In fact, as I’ve sat with it for a few days now, I’m thrilled. I still have no doubt that he will be able to do contribute and go on to further education in his future. It’s not an outrageous expectation: I’m basing it on the person I see in front of me who is utterly capable and who is a privileged boy in that he is being given two healthy, willing parents who enable opportunities for him in his life. I still work in Inclusion because I want to see more opportunities for Adam by the time he reaches his twenties. We have to work at all angles — both in Special Education and Inclusion. The trainings co-exist and are not exclusive of each other.

This lead to another thought I had this morning as I still read the many pleas for money for “Early Intervention.” I wondered why, after I’ve come so far in my own thinking, the term still bothers me to the extent that it does. So here’s my answer: Adam doesn’t need intervention. I may be lucky that Adam is an only child as I have nothing and no-one to compare him to except for my own childhood. I figure we have made our own normal. Our weekends are full — yes, we do visit friends and other children, we have programs to attend, concerts and plays to see — and yes, these have to be pre-planned (but then again, what family doesn’t organize a play-date?). No, I cannot drop him off and leave him alone in someone else’s house yet, but like all things Adam, he will do things his way and his own time. I could sit here and cry and bemoan that fact that he is not doing all of the “typical” things other boys his age might do, or imagine that he is somehow lonelier for it. But is he? He has no siblings to compare himself to. He is competent in our home, a burgeoning artist, musician and cook. He enjoys other children and will likely gain a long-time friend when he is ready. Like myself as an only-child, he has learned to entertain himself or play with me or spend time with his grandparents or much older half-siblings when they return from university. For us, our normal was early engagement and we grew into acceptance. For certain when Adam was two years old, I believed all this engagement would make him more “normal,” whatever that meant to me at the time. Six years later, I can see that our life is normal. It is normal to us and aside from our personal struggles recently with life transitions, I really love our life. I figure that one of the many gifts I might be able to give to Adam is my belief in this. All I have to do to believe it, is to let go.

The idea that one has to intervene still suggests that something is wrong. The other day, my best friend’s niece was on the A&E show called Intervention. Amy suffers from aneorexia/bulimia and is in serious trouble. The family asked for the show’s help in getting Amy the help she really needed. If not, Amy would die. To me, this is the seriousness of that word Intervention: it suggests that something is seriously wrong and is akin to the analogy that autism is like “a fate worse than cancer.”

It is not. Autism is our normal. Autism simply means that I needed to engage differently at those early stages of growth, not employ the tactics of early intervention. I wish I had had someone to tell me this when Adam was first diagnosed as it has taken me time to grow into my thoughts and words. Adam was not ready for the forty hours of ABA that was suggested back in those days, and we all know that even with all that ABA and all those promises, our children are still autistic.

When I hear parents complain about autism (see this blog on Kim Stagliano and her recent tirade on blaming autism for Aiden Johnson death), I can feel myself being sucked into a vortex and I do not see how that helps us become better parents to our children. Yet I suppose if certain parents truly feel empowered by believing autism is like cancer, if that gives them some kind of hope as the walks, marathons, runs do to defeat disease, then they will work and talk hard. They will use fighting-words.

I am of the belief that by fighting, one is defeating the child, not the autism. I am of the belief that by attacking the child from every angle like a huge dose of chemo sends a message to that child with a different perspective and manner of engaging in the world, that THEY are wrong. I see autistic children as they grow older with those beliefs surrounding them, absorbing the idea that autism is a disease and that “they are more than their autism.” What does that mean other than a denial that autism has truly effected the way one perceives and engages with others and the environment? Why not be proud of that and learn ways to take advantage of it?? I’m so sad to see parents fight so hard and then become so despondent.

I propose that while we are changing schools next term, that we again look at the terms we use. Had I intervened with Adam in an aggressive way, I truly believe he would have regressed into himself and perhaps with more aggressive behaviours. Instead, I propose we act gently. We have to challenge ourselves everyday with the notion that there are many kinds of normal in this world and while the world may not yet totally get it, it is through our use of terms and our actions that will enable the rest of our communities to jump aboard.

I am very uncomfortable using the term early intervention for assisting autistic children. I believe we have to work to change not only our attitudes, but our terms have to catch up. Perhaps we can use terms such as early engagement and early promotion of the different forms of play that we can engage autistic toddlers in the same respect and presentation we promote play for typical toddlers. Of course, the earlier we can do this, the earlier parents may be able to accept their autistic toddlers, and this supports everyone.

Keeping Autistic Children Safe

Filed Under (Acceptance, Safety, Sensory Differences) by Estee on 21-04-2010


This is the first article published by realtorsthatcare.ca that I wrote on making safe yet attractive living spaces for autistic children. Thank you, Zeshan, for both caring and for being interested in this topic.

While safety may involve anything from picture symbol reminders to locks, I’ve also paid attention to “safe spaces,” that is, making safe sensory places where Adam can escape and learn to self-regulate. As I mentioned in the article, as I learn about what Adam needs, I like to create fun, aesthetically-pleases places and devices that both Adam and I can live with and enjoy.

Photo credits (and all good photos of Adam are taken by) Mike Klar whose work is linked here.

Aimee Mullins on Disability and the Opportunity of Adversity

Filed Under (Uncategorized) by Estee on 14-04-2010

Please watch this video on TED.com. “It’s how we meet adversity,” that matters. No matter what the challenge — autism, other disabilities, emotional struggles, we have opportunities when confronted with adversity. I was thrilled with this video as I try to convey the same not only in how I discuss autism and parenting my son, but also how I attempt to deal with emotional issues post-divorce. I certainly hope that I am conveying a similarity between autism and ‘disabling’ events in life under this umbrella. It is with adversity that we have many opportunities:

I am also posting this as I continue to wonder why schools are still averse to including autistic/disabled children in our schools and in our communities. I hope this helps change attitudes further. We can lift the lid. We have to work on showing teachers, schools and members of our communities just how to do it. But it starts with thoughts and words about how we view disability.

Review of Stacy Morrison’s, Falling Apart in One Piece

Filed Under (Acceptance, Creative Non Fiction, To Get To The Other Side, Writing) by Estee on 13-04-2010

falling_apart_in_one_piece_ “Forever can be undone in a second,” says Stacy Morrison, author of Falling Apart in One Piece: One Optimist’s Journey Through The Hell of Divorce (Simon And Schuster).

Stacy is a successful editor of Redbook Magazine. She begins at “the end,” she says — when her husband declares without counseling or any other clue, that “he’s done.” He leaves Stacy to piece together all the possible reasons for his leaving (over 300 of them apparently, which she has numbered), as well as the pieces of her life and very being. She is left to raise her three-year-old son Zack and learns to become a single parent, throughout trying to figure out where she belongs.

Chris, her ex, hangs around a bit, although he clearly doesn’t take a role in parenting in the beginning. With all of her obligations, her job, her type A personality, Stacy stumbles, crashes, falls, and then swims into new existence for as long as two-years post divorce. She finds she does not fit into old social networks, is struggling to keep all the balls in the air, while dealing with an “evil” house that gushes water in the basement which she must repair before selling it post-separation. The theme of gushing water runs throughout her memoir as she finds a new home for herself and for Zack. The sound of water (and she even experiences the gush in her new apartment from a leaky toilet) haunts her in her dreams even as she has moved into her new place and it serves as a metaphor for her feeling of drowning post-divorce. “I was still afraid of my not-quite-ex-husband and the way he seemed to hate me. And I still had to start over on starting over, because here I was almost two years later still stuck, still falling apart, still floundering, still drowning, goddammit. Still under water.” (p.205)

What was startling to me was to read how such a confident, capable woman, similar to most women I know, was so scared and disabled by having been left. It was striking because no matter how competent we believe we are, the dissolution of a relationship, especially one with a child, can be so debilitating and take years of recovery. It is endemic of our society that we think we can plan everything. It is this belief that we can actually be in control that leaves us standing dumbstruck at the aftermath, wondering why it all didn’t work out.

Chris, her ex, seems supportive of this book, wherein she regards his unfulfilled dreams having been one of the reasons for their divorce. “He hated me for being capable. For dealing. For buckling down and handling the stress of life. For being someone who attracted stress into our life. For being someone who liked challenges. For being the person who would step in when he had to step out.” (p. 63) For letting Stacy write this, I give Chris so much credit and it attests to his strength. It must be difficult to read about your short-comings from your ex, your unfulfilled business dreams (which I hope have since been fulfilled). Yet, on balance, Stacy lists a multitude of her own shortcomings and she has to work through the perceptions of Chris about her as well as of herself.

“At night I could feel other reasons sneaking into my head. I caught glimpses of where Chris and I didn’t see eye-to-eye, the parts to me that I didn’t necessarily even like myself, the instances in our marriage in which I had been selfish or mean or ungenerous, the moments when I had doubted our relationship. Maybe I was a bad person. Maybe I wasn’t who I thought I was. Maybe I was unlovable.” (p. 40) “Every single piece of who I thought I was was being called into question as I sifted through our shared history, looking for my answers.” Stacy talks about how he called her an “unhappy person” and “crazy,” which seems to be, as she notes later on, Chris’ issue. Yet it effects her to her very core as she tries to heal from the breakup.

In one exchange, she gathers her wits and says to Chris, “‘I am sorry that is how you see me and how you experience me. And I know that you do. But I know in my heart that I am a generous and loving person.’ It was the turning point, the moment I realized that I didn’t have to meet anger with anger, that I didn’t have to marinate all the terrible things he wanted me to feel….I could also see that Chris was lashing ot at me partly because leaving me hadn’t cleared him of his responsibilities to me and Zack, but I knew that whatever anger he was feeling about that was for Chris to deal with on his own. In that moment of vulnerability, of being open to his anger, I sensed a strength in myself that I knew I could trust.” (p. 121)

Stacy shares so much of herself and of her struggle to stay afloat emotionally for herself and her son and she learns to grow into a new relationship with Chris while letting go of the dynamic they once shared. She lets go of all the “complicated reasons a marriage starts to fray,” and reflects on her friends and colleagues need for a reason — did someone have an affair? Who was at fault? Although she was the one who “was left,” she doesn’t have a high opinion of how onlookers need to find reason or blame, and postulates that perhaps finding those easy reasons (at least easy in terms of logic) shields them from the many cracks in their own relationships. All one has to do is to look at Elizabeth Edwards and not feel terrible after what she has been through. The fact that a woman has to be blamed for “emasculating” her man if he has an affair or two is just but one example of how society wants to find a simple reason for a failed marriage. Certainly we all want to believe that we are untouchable by the possibility of breakups. We all want to believe that what happened to our friend, that politician or celebrity would never happen to us.

Stacy’s moral is that no life can be planned, and as a arch-planner, this was one of her lessons. She says, “Life is good. Life is hard. These two truths are unrelated…Everyone has pain in their life. It counts all the same.” (p. 230) The truth is, it can happen to anyone. There don’t seem to be any rules we can abide that can truly determine a successful relationship. There are too many factors in life, too many circumstances, too many turns to be able to determine a cause for either success of failure. Perhaps too, there is no such thing. Perhaps we are simply fortunate to have had a relationship at all — no matter what the duration.

While she becomes successful at learning to leave Chris’ opinions of her behind and leaves him to sort out his own issues, I once again applaud Chris for allowing Stacy to write this memoir so honestly. There is not a hint of self-pity in this book and for every one of her perspectives, I believe she is fair and she cites many of her own “faults.” It is simply an honest tale of how two people have grown apart and their need to find their own paths. In writing it five years post-divorce, she also calls her own situation “fortunate” in that she and Chris are still raising Zack together. “I think about how Chris is a much better partner now than he could ever have been if we had stayed married,” she says.

When reading her memoir, I think back to how excited I was to marry Adam’s father and how we spent our thirteen years together as a couple and all the joyous and challenging days. I think about how proud I am of having had that relationship and having Adam come from it. I had always called Adam our “love child,” as he was conceived right after our marriage. I remember the courting, the planning and how excited we were from all of that and how the whole family got involved and how important it was for me.

It saddens me, however, that we still, in a liberal day and age when we are learning to get along in many different familial configurations, that divorce can still become so acrimonious, and how it can end so abruptly. It is devastating for so many people — family and friends combined. While anger is natural, it is just but one stage in the process of divorce. It was this paragraph by Stacy that I liked that I feel could help people heal better, in order to honour a partnership so significant:

“I believe there has to be a better, more connected, more compassionate way to help people around us honor the end of one of life’s most beautiful leaps of faith.”

And that is what marriage is. It is a beautiful leap of faith against all odds, and like Stacy, I’m still glad I did it. By being glad, by honouring the time we spend with someone, we permit ourselves to move forward with evermore hope and joy in our lives. It seems that both Chris, Stacy and Zack have been able to do just that.

Adam’s 8th Year

Filed Under (Acceptance, Adam, Communication, Single Parenthood, To Get To The Other Side) by Estee on 12-04-2010

“This movie is rated G and is suitable for all audiences.” Adam sat on the couch when we arrived home from Florida, both of us exhausted after waking at 3:30 in the morning to catch an early morning Westjet flight that was cheaper than the rest. The early bird catches the worm indeed, but you have to be prepared to be sleepy for the rest of the day. As I turned on a movie for Adam and I to watch together, this silent caption came on the screen and he read it, fully understandable to me. Adam’s speech over the past several weeks is becoming markedly clearer. Then, something suddenly went wrong with my cable box (as it has all year long — I need to write a separate post on the ABSOLUTE RIDICULOUSNESS OF TELEVISION TECHNOLOGY AND HOW FRUSTRATED IT MAKES ME, but let me save that for another day), and then the sound went mute.

“Oh my God!” exclaimed Adam. “Oh my God,” he said again like a Valley Girl. It is something that I say when I’m COMPLETELY AND UTTERLY FRUSTRATED WITH THIS NONSENSICAL TECHNOLOGY, and my boy is listening indeed. Coming out that cherub mouth, that voice that still sounds so very tiny let alone the mouth that says so little, I am of course ecstatic and laughing.

“You’re right Adam,” I affirmed by hugging him and scruffing up his dark blonde hair, “Mommy is really fed up with Rogers Cable. Just wait and I’ll see if I can fix it.” I attempted changing inputs, mumbling my frustrations to myself lest Adam learn some words I’d prefer he learn later on in life, checking cables and rebooting several times — all which seem smart and logical attempts at fixing the sound problem. Instead, Grandpa, who studied electrical engineering no less, jiggled the box and voila… the came sound back. If only I had thought of that. There is irony in this, I hope you see. Sometimes we try so hard to fix things when all it needs is a little jiggle.

I have to say that this Monday morning, the day after Adam’s 8th birthday and back to work and school, I am kinda floating on air. It was very apparent to me how much Adam needed me during this trip and how happy he was to see his mother happy again. Something has shifted during the heavy period of separation and we seem to be settling in. I think it started when I created my own space, made it mine and began to live in it. I knew that fixing a house was a process of also fixing me. I had thrown every effort and last bit of energy making it Adam’s and mine — a place where we could be happy again, and it saved me during this most difficult time. Yet by throwing myself into this, Adam was also needing me. While I was still living in the matrimonial home during the process of fixing up this house, the weight of it felt as heavy as being buried six feet under. The house I had built with my ex now came to represent loss. The foundation that had been faulty in that house and needed rebuilding, so symbolic. So how fortunate I was to have the time to create something new for Adam and I — something now that I have come to appreciate so much. So blessed do I feel today with spring upon us and having finally made that move so that we can move on with other things.

The house has a lot of light which was important to me when I found it. I wanted Adam to feel the light and the air as well. Moving was tough, as many of you already read in previous posts. For Adam, security is found in environments. It takes him time to adjust and this was extremely difficult beginning from late last fall. Every time I thought we were over a hump, we were right back where we started with really bad-looking spasms. I did not see Adam smile very much during this period, and it made my sadness and worry ever more pressing.

Despite having the house prepared, there is always more work once one moves in — things don’t work properly and living in the house day and night, I began to feel how it wanted to live. The house asked me to learn all of its idiosyncrasies. It asked me to support it and work with it. It has been a couple of months now since we moved in and I believe I am getting to know her well. I think the house is certainly feminine because she is beginning to support us.

In Florida I was relaxed and didn’t worry about the house or anything back home as I had in the past. I had completely relished in taking Adam many places, and swimming with him every day. I noticed his great huge smile returning, the way he listened and talked to me more than ever before. It seems every year and every trip and every new experience (even after hard ones) sends us forward again. Adam wanted to be with me so much as he grabbed my hand or told me what he wanted to do, looking up at me, smiling. All he wanted was his mother back and all to himself. Going through divorce I know I had tried even harder to be present for Adam, feeling so guilty about the breakup and upsetting his life. Such contrast in my states of being seem so stark now that time has passed and I am feeling relaxed again.

Returning from the airport was a little strange as this was the first time we would return from Florida to our new home and I realized it when we took the new route. I was concerned that the house would feel foreign again after nearly two years of hard labour and emotional work. Yet, when Adam ran up the stairs towards the front door, threw off his shoes and ran into the kitchen with a great big smile, that was it.

I did it, I thought. I made this house a home. Adam’s smile and getting right back into his routines was testament to this and his being here with me upon a return was one of those markers in my life that I will never forget. It was as if he gave me further permission to relax as he stuck in his metaphorical flag in our family-room floor. We belong here and we belong together.

_DX03632The following day I set out hurriedly to prepare a birthday party for Adam that was suitable for him — the chocolate birthday cake, the sparkler, his favorite friend and cousin, and some family. Presents came next. The boy who never understood that there were presents underneath that paper several years ago (the paper had been entertainment enough back then) has learned to open them with greater anticipation. He was happily answering questions and hanging out with people, and took his favourite friend by the hand to show him his room. When we parents checked in on them, they shut the door on us, not wanting us to disturb their playing.

Adam’s happiness clearly has a direct effect on mine, and mine seems to have an effect on his. His happiness over the past twelve days has helped me and his feeling at home in his new house makes me feel as if I’ve earned, and learned, something important. Both the house and Adam pulled me out of my head during one of the toughest times of my life. Adam needed me every day and it was every morning that he got me out of bed during the first six months of my separation. Then, it was the house and a vision of Adam and I being happy together again that became a necessary obsession. Working on the house was the promise of hope.

While I have not written about my situation, and my deadline for finishing my manuscript is the end of this year, I’ve come to realize that even writing about writing here is a little difficult because I’ve been so close to intense emotions. I’m not so certain that no matter how a divorce happens, that the details matter in the end, although they make for my truth and the story itself. A marriage is so utterly complex that it is difficult to pinpoint one exact reason for it not working, and it is simply too easy to cast blame on people. For now, that’s all I say about the subject, except that like I always talk about in autism, life is supposed to be filled with challenges and joys. We so often want to avoid the things that are difficult but we forget that all of life’s events are unavoidable so we might as well live them well and let them build us. For that reason that I must be an optimist by nature and I will always be a risk-taker. I will always believe in love, partnership, marriage — whatever works. I believe in it even when I have tripped and fallen on marriage before.

I am still on a path on my own and with Adam. I am finding out where and who I am again. These are two separate things — this healing from divorce as well as raising a son with autism, yet I cannot avoid intertwining the experiences as Adam and I grow together. I do find it difficult to relate to other people who are divorced, for they do not have autistic children, and going online to talk about parenting children with autism is a little difficult when the parents are not divorced. Like my house, our lives are unique and we are growing into them every day. While I’d love to find easy answers on some days, or support networks on others, they never quite hit the mark and then I realize that I am truly on my own, no matter how supportive and uplifting friends are.

After all the guests left after chocolate cake on a sunny spring day, I remembered the day Adam was born and showed him a picture that sits at the entry of his bedroom with his birth announcement. His dad was equally excited the moment Adam was born and it felt a little odd that he was not with us yesterday, but I plugged on knowing that this absence is now permanent, at least for me, and our relationship as co-parents is also evolving and growing — all another step in accepting what is and what makes Adam and I a complete family. I let the moment pass through me thinking back to those eight years and quietly asked Adam to the wall where I could measure how tall he was. I miss the old measures in our old house where I marked the wall there beside his bathroom. I no longer have the measures when he turned two, three-years-old and so forth and something about that makes me feel a more profound loss, as simple as markings on a wall beside a bathroom may seem.

So at twilight I asked Adam to stand next to the rocket-ship measure I placed on the wall beside his new bathroom. He stood against the wall and I put a book on his head to mark it right, saying very little, feeling hushed by this moment:

47 inches
Adam, 8 years old
April 11, 2010.

Right there, on the wall of his bedroom. Like the flag being put into the ground.

Home.

Neurological Nirvana

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

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

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

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

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

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

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

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

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

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

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

My Very Important Job

Filed Under (Adam, Joy, To Get To The Other Side) by Estee on 02-04-2010

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I had a very important job today. One that surpasses all administration, bills, and the like. My mandate for the day? Make Adam giggle… a LOT. I realized that he hasn’t been giggling as much as he used to. Adam, who is about to turn eight, is becoming a much more serious little boy, but he is also a little boy who is experiencing so many changes.

Adam is on vacation and as usual, we head to his home away from home: Miami. I haven’t been away with Adam since December and we are both having a really good time. Adam looks up at me often and smiles, hugs me, grabs my leg and is a lot more verbal down here. He seems glad to be spending lots of one-on-one time with his mother who is not otherwise distracted getting our lives back on track. I realized, while walking along the edge of the ocean hand-in-hand with a contented little boy, that in between school and programs and the big move, we have been drifting through our days trying to survive all of the changes of separation and divorce. While it’s a part of living, may it only be temporary! Adam sure likes his mother happy (and so it goes, mother likes Adam happy too).IMG00332

Sometimes we just keep doing things day-after-day and we forget about the sun, the ocean and the importance of doing very little in order to make room for all of the possibilities. In the sea of change, we try so hard to find the lifeboat forgetting that all of this too is what life is about. Change is the only thing certain — so goes the saying. With change, opportunities.

When the sun shines and Adam smiles, there seem to be so many more of them.

The Long News

Filed Under (Autism and The Media) by Estee on 01-04-2010

We are bombarded by news stories. If you are like me, you might remember CNN in its earlier days, when it was significant to watch the fall of Soviet occupation in Wenceslas Square or the Berlin Wall coming down (I was in Berlin the year before and in Wenceslas Square just last year — side note…doesn’t really matter). The only two other times in my life that were highly memorable in terms of news-watching was the first man on the moon in 1968. I was only three but I remember it well. Of course, we all remember that atrocious day of 9-11.

Today, I hardly watch the news. CNN is a plethora of pundits commenting on the news events. There is hardly a representation of real news anymore; by that I mean interviewing the people who are part of the story as opposed to onlookers who comment on the story. Thank you very much, but I think we should be reading such opinions from The New York Times or other older styles of news media that we held in our hands and contemplated. I for one still buy The Atlantic, Harpers, Utne Reader among others which I find intelligent and thoughtful. The demand for creating news 24/7 has not only overloaded us, but in my opinion, forces us to live on the periperhy of life, contrary to what we thought it would enable us to do. A lot of news doesn’t make us more engaged in the world. We might hear a lot of what is happening on our planet, but we are neither partaking in it, nor absorbing it well.

I don’t think I need to explain that this is happening in autism too because it is such a hot topic in the news. It’s a very fine line because all this new media (it’s sheer quantity), can also be an opportunity. Yet, in my experience in dealing with the media, there are journalists and programs few and far between that will devote the time, energy and funds to researching a topic for a great length of time. That documentary “Positively Autistic” (see one of the videos on the sidebar of this blog) took eight months to produce! Lani Sellick its producer, spent months calling and visiting people trying hard to understand the rick complexities that embody autism. The piece was approximately fifteen minutes long and now CBC’s The National — a program that had been defined by the late Barbara Frum — has now cut such pieces from it’s news program because the format has changed and those pieces were “too long.” No one wants to spend the time or the money really getting to the heart of an important story. It’s all fast and furious and well, empty.

I have been a member of The Long Now Foundation for just over a year.This excerpt, from the TED conference is about The Long News. Not only does the Long Now Foundation raise questions about why short term thinking about our world is a problem, the immediate point that comes to mind is how this short-term “autism-is-a-problem-that-must-be-cured-asap” can be especially dangerous. Many ethical questions begin to come into play.

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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.