Lazy Days of Summer

Filed Under (Adam) by Estee on 26-08-2009

Tagged Under :

6492_128612431217_516086217_2966165_1979503_s-1 Well here we are, mother and son enjoying some quiet cottage days before the hectic pace of September. There’s something to be said for spending quiet times of doing little else than reading, walking, painting, boating, swimming, eating and just being together. This surely would have been something I would have been afraid of doing in the “early autism” years, worried that Adam might not get his “therapy” fill. But the wind, the fresh air are therapy enough for an otherwise hurried life. I’ve always loved to travel and to experience new things, and while I’ve pulled back a bit since Adam’s birth, I also keep trying to take him places. Even if he can get a little anxious, I know he also loves the experience once he is able to adjust and settle down.

Adam wasn’t used to this new and rented place. Like many autistic people, adjusting to new places can be very difficult. It took Adam about three days to get comfortable here. And thankfully, I had the resolve to hang in there with him, to hold him, to tell him it was going to be okay, and to let him do what he had to do.  Being a parent of an autistic person is also knowing that it will take a few days for the child to adjust. It’s knowing when to hold back, and how to help them along without pushing too hard.  It’s about being very very patient. So, while it started with a lot of tears, you can see here we are now having the summer of our lives.

Cheers to the final lazy days of summer.

Before Motherhood: The Child In Me

Filed Under (Uncategorized) by Estee on 24-08-2009

5536_163963020328_531425328_3905111_5995336_nThis is me in 1981. I’m singing at St. Michael’s Choir School Stage with our band “Maurader.” Those were the days… every weekend jamming in someone’s basement. I played keyboard and as you can well see, sang. I think these were some ditty’s from Pat Benetar….”You’re a heartbreaker….”  Now this was no motley crew. I sang and went to school (St. Mikes was our “brother school” as I went to HNM — an all girls school) with Michael Schade, now a world-renowned tenor, and Mitch himself is now a composer, among some other of my friends who stayed in music and went on to do other marvelous things. The folks from St. Mikes and HNM are a highly-achieved bunch. (C’mon friends, speak up).

Driving up North with my son Adam, the singing hasn’t stopped. Both Adam and I sing out loud to the radio tunes. The rock and roll girl still lives on some 25 years later deep inside the responsible, devoted autism mom. I dance and sing with Adam every day and he loves it. He loves mama’s spirit and mama love’s Adam’s.

5536_163963025328_531425328_3905112_754729_s-1 Adam learns piano. He loves to sing. He loves to dance. We can never downplay the innate gifts we have to give to our children. Thanks to my old friend, Michel, who found these photos, and some of my high school friends (thanks to Facebook), I am aided in that they help to resurrect the great memories and the strong bonds we had. They awaken a side of me that I had nearly forgotten. Going through divorce makes one want to go back to one’s roots. And mine, thankfully, are strong. The memories bring me back to myself. I am painting again — Adam watches every stroke of my brush with great intrigue and attention — he particularly likes it when I paint his portrait. I bring out my guitar to see if I can remember how to play. While writing has turned into my first passion, the other artistic pursuits help move things along when I am stuck. And if it’s passion we’re talking about, I’m happy to say that one of my favourite bands, RUSH, is also going through a revival — eyeglasses, arthritis (I am just assuming) and all. (I am wearing my glasses I cannot live without recently as I write this). It’s all rather fun to rediscover in order to grow.

5536_164445075328_531425328_3912954_7695774_n-1 (This photo was the band that started it all…Xephyr. My first boyfriend on the far right — that is if you don’t count the 1st beau in Kindergarten).

So if ever you think you’ve lost yourself in times of great change, I think it’s important to go back to the days when we felt most fully ourselves. I don’t care if someone thinks I’m a goof  for doing something because of my age, for being a little silly and taking chances will be the one thing that keeps me vital. When we are young, there are no real obligations to quell some of these risks we take to discover who we are and what we love. Growing older and more experienced in life has certainly made me wiser, but when I look back at myself I get the chance to remember an aspect that still lives strong within me. It reminds me that it’s not over — the exploration not yet complete.

While I still sing in the car, I often think of returning to voice training now that my life has cracked open again — and why should I not? I’ve sung in choirs (once with Toronto Mendelsohn), and in many other venues.  I also consider how I’ve turned my creative self towards autism and Adam and how he challenges the artistic growth within me as I also hope to nurture it in him. So, forgive me for being a little self-indulgent as I turn giddy down memory lane. Remembering who I was makes me excited of who I may still become.

Rock on.

The last sweet days of summer 2009

Filed Under (Adam, Autism and Learning) by Estee on 21-08-2009

IMG00880-20090821-1245 It was a happy and a sad day, Adam’s last day of the day camp he has been attending for the past three years. I remember when he was very little — around three — when I’d drive him in for a half day. I worried so much in those early days. I worried if something would happen to him. I worried if he would be happy or upset, as he was so easily in those days. I hung on every word and report the staff would give me and I would jump if my cell phone ever rang while he was not in my care.

Several years later, Adam seems to be a bit of a bigwig at camp. I am happy that he seems to swagger on and off the bus, and this year he did his last week without an aide, except for Greg (seen on the left) who agreed to shadow Adam on his last week. I had, of course, asked permission to publish this photo.

I picked up Adam at noon so we could head up North for his last couple weeks before school starts. And what did I find? Adam was hugging and playing with his counselors and their affection for him was in no short supply. We could barely leave after saying multiple and lingering goodbyes. Alyssa was sitting with him waiting for mommy. Greg was as  well. When we headed for the car, Jeff had to stop Adam one more time. Some other counselors waved from afar and didn’t make it into the picture.

This was a phenomenal summer for Adam — Addy is what I call him at home. He rocked the rock-climbing wall. He hit the target a few times in archery and had his first forays into baseball and golf. My kitchen shelf is FULL of ceramics and other arts and crafts. I can’t even keep up with all the songs he comes home with. Today, said Greg, it was “Tonight’s gonna be a good night,” by…oops I forgot…but it’s on the radio a lot. Adam tries to talk and it’s a challenge, yet it’s coming. He picks up a lot from his friends at camp and every day, I could tell Addy was, well, a happy little camper.

The end of Summer 2009 for Adam, in this year of enormous change in our family’s life, has been a successful one. Thanks to all the staff at his camp (which I will not name for obvious reasons), for accepting Adam and letting him succeed… as he is.

Disability Studies Online

Filed Under (Critical Disability Studies) by Estee on 20-08-2009

Critical Disability Studies is a growing field of study which studies the history of disability and contemporary disability issues in the humanities and the sciences. If you do not have the time to attend full time studies, there is now an online option:

http://www.cds.hawaii.edu/main/ads/certificateprogram/

http://www.cds.hawaii.edu/main/downloads/news/2008_2009/pdf/DistanceLearningCourses.pdf

I can personally attest that the study is eye-opening and fascinating even if there is no person with autism or another disability in your life.

Top 50 Autism Blogs

Filed Under (Websites) by Estee on 18-08-2009

Tagged Under :

We’ve been rated again. Only this time I rather enjoyed reading the thoughtful summaries of all the blogs they rated. No particular perspective is favoured here on this site as the spectrum of political viewpoints are all represented.

Visit this website for the latest top fifty autism blogs: http://nursepractitionerschools.org/top-50-autism-support-and-research-blogs/

Ryan Barrett

Filed Under (Uncategorized) by Estee on 17-08-2009

48673560-1This is Ryan Barrett. I do not know him. But he could be my son, Adam. He is beautiful. I’m sure he brought his family so much pride and joy. When I read the story that he was found dead I responded with unusual intensity. I feel as if I am looking at my own son — those vibrant eyes. I know that Adam brings so much life to me in ways I could have never imagined.

I am saddened by this story and for Ryan’s family. I do not think I could carry on without my Adam. So for Ryan’s family, I offer my heartfelt condolences on this horrible loss. See story: http://www.wpix.com/news/wpix-autistic-teen-found-dead-campsite,0,7027775.story.

CBC’s “Positively Autistic” Wins Its First Award

Filed Under (Autism and The Media) by Estee on 11-08-2009

Last year, I participated in this CBC documentary “Positively Autistic,” which first aired in October 2008. The documentary has received exceptional positive feedback and has won it’s first (note how I write first) award:

http://www.newswire.ca/en/releases/archive/June2009/27/c2007.html

RTNDA announces 2008 National & Network Award Recipients

    TORONTO, June 27 /CNW/ - Some of the best news stories and programs in
the country were honoured tonight by RTNDA Canada, The Association of
Electronic Journalists. RTNDA Canada presented its coveted Network RTNDA
Awards at an event in Toronto.
    National awards were also presented to winning stations in Central
Canada. Similar awards dinners have been held in Moncton, Edmonton and
Vancouver over the past several weeks to honour winners from other regions of
the country.
    The awards program was the culmination of a conference focusing on the
future of local news. "Congratulations to all the winners" said RTNDA
President Cal Johnstone. "These awards underline the value of local news
coverage to Canadian communities."

You can watch the CBC documentary located on the right-hand margin of this blog.

Super Boy

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

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

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

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

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

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

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

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

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

IMG00849-20090811-0812

Ontario’s Accessibility Act

Filed Under (Activism, Autism and Learning, Critical Disability Studies, Inclusion) by Estee on 05-08-2009

By 2012, accommodating disabled persons in Ontario will become mandatory for all non profit organizations. Accommodating people with disabilities will be enforced, and this will make it necessary for all not for profit agencies — which includes hospitals, schools, religious organizations, transportation services and the like — to be able to utilize and/or make available Assistive Devices for non verbal individuals as well as other equipment, environmental provisions and the deliverance of the “products and services” (which entails what we commonly refer to as  accommodation) for a diverse population of individuals with various needs.

Under the Ontarian Accessibiltiy Act which became law in 2005, non profits will all have to comply by 2012 and other businesses by 2025. The use of such terms as “customer service,” positions the act to read that it requires to view our disabled population also as clients and consumers — the latter term which, in our current economic belief and behaviour, renders Ontario’s disabled as more “valuable” citizens.  It is true that the disabled are important part of our society and contributors to our economy, and it makes sad but true sense that our legislators have to enforce the accommodation of all our citizens by using these terms. Economic terms. We deliver a basic human right via “customer service.”

Now that it is soon to become mandatory for an area that I’m particularly interested in — schools — I wonder why there is continued resistance in Ontario to use AAC (Assistive Augmentative Communication).  Adam needs the computer in his school to communicate his understanding of the concepts being taught. It seems like simple ABC to me. In this day and age where technology is common and relatively inexpensive, and where autistic children can indeed excel, it makes little sense that we have to make enforceable the ways and means that autistic children can participate and be included in the classroom and with their peers. This argument goes beyond devices and right down to understanding how autistic children can learn and respond and how the format of the lessons and teaching styles need to be delivered. For if our children are now viewed as valuable “clients,” then one would think they should certainly be entitled to no less.

I for one am working with the act and terminology to encourage service providers unfamiliar with accommodating disabled people in Ontario to adapt and include. Once we can help others to understand that disabled children do not “pull their other children down,” but in fact propel them forward both as compassionate human beings as well as academically, we can create more just classrooms. “Research shows that for typical students in inclusive classrooms, academic performance was equal to or better than that of general education students educated in noninclusive classrooms.” (Exceptional Children, 64: (1998) 239-253) “And, contrary to the worries of many parents of typical students, the inclusion of students with severe disabilities (when there was appropriate support) did not reduce teaching time nor create many interruptions.” (Exceptional Children, 61,3 (1994): 242-253).

Yet the burden of proof will remain heavy upon us for some time. There is not really a day that we do not confront resistance to inclusion (or “barriers” which is a commonly used term), in the name of safety, medical needs, the guise of inclusion under the term “mainstreaming,” competition and more myths about why special needs children should not be included in our communities, schools and daily life. It is up to us to hold steady with this burden  to keep up the research and the dialogue about why inclusion is good for everyone.

As Adam goes to an inclusive school, it seems logical that we learn to teach by teaching and we learn to include by including. Legislation or no legislation, we will still have a lot of work to do in order to help others understand autism and autistic people as valuable and entitled in their own rite.

Propulsion

Filed Under (Uncategorized) by Estee on 04-08-2009

Adam is learning to cycle. It is this cycling in the outdoors that keeps us alive in a time of change and confusion. It is a forward motion, it is a challenge to overcome negative thinking, the past, the things we can’t change. My cycling has become a major part of my life this month, and it must be contagious because Adam keeps asking for his bicycle. I think this is something that is going to be something Adam and I will share.

Now that may seem unremarkable for many. Yet my son, who had such difficulty coordinating his body when he was younger, who could not propel forward with his legs, let alone steer at the same time, is now able to coordinate all of those remarkable steps we take so much for granted. I can see us riding into our future together — mom and this little boy who will soon become a man before I know it. I know he will take some paths I will never take. I know one day I will have to let him move beyond me, even though I will not be far behind. But for now, I am here to help him learn and soon we will ride side by side.

Adam is still on his training wheels and I am training on hills. Yesterday, I accomplished a 35 kilometer ride on a heavy bike (I have to get a road bike). I worked twice as hard and I dug deep.

As I did, I noticed my thoughts. When I think about what’s been “done to” me, I become a victim. It’s so incredibly debilitating. But when I refuse to be a victim, I can ride like the wind. Climbing up hills on a bike not suited to them, I had to push extremely hard and it would have been easier to give up. As I rose to the crest of the hill, all my negative thoughts washed away. Divorce or diagnosis — no matter what “D” you are facing (I like to call them the “D’s” — divorce, disability, diagnosis, disease, death, depression…), we cannot succumb to victimhood. We have to instead “dig down deep,” and face the demons which only we create in our minds. Demons are negative thoughts. They are always there, wanting to take over and render us zombies.

Divorce is so much like getting a diagnosis of autism with your child.  Your world is shaken to the core; all your beliefs our challenged; you struggle with your own identity and future in the midst of an uncertain one. I can’t think of any blessing greater, actually, than being challenged to the core like this. No, it’s not fun, but I have to make it so now after ten months of grieving. It’s much easier to glide through life and it is also a blessing to have a strong relationship. But my thinking of hard times as a blessing is the way I can turn things around, for what becomes “real” is manifested by our thoughts. These are the choices that can turn our lives into something vibrant, or something that dies before its time.

So today, I will run and tomorrow I will cycle again. This, I hope I’ve conveyed, is about more than aesthetics. As a mother to Adam, I think about our future, my vibrancy, for the sake of not only myself, but for him and for others around me. I’ve lived the past seven years climbing steep hills of various kinds. I’ve glided down some great hills too, as my reward. I think that for all parents of extraordinary children, we can tend to get wrapped up in the politics, the struggle for acquiring access and services, or for some parents, the (in my opinion) negative struggle of trying to change the autistic child to become “normal.” Sometimes, we need to focus on our own thoughts and challenge our own thinking in order to serve better.

They say one can always become fitter. And so it goes also with the mind.

The Times, The Blogs Are Changing…

Filed Under (Activism, Adam, Family) by Estee on 02-08-2009

What’s a life anyway? A series of decisions, forks in the road, relationships, children.  I consider that sometimes, people are afraid to make decisions and many let others make decisions for them. I do not want to live that life.  Life is that proverbial struggle, that uphill climb, like my recent bicycle ride. I wouldn’t give up then, and I don’t give up now.

Kristina Chew’s recent post, Ave Atque Vale,  reflected what I’ve been writing for nine months now but less forthrightly. She too recognizes that as Charlie grows, the need to blog and write has shifted focus to disability rights instead of vaccines, therapies and the like. I think it’s really interesting to see how many of our lives are parallel, and this is viewable by following bloggers who began writing in and around the same time (most of them are on The Autism Hub).

I look back at my early writing even two years before I began blogging — some two hundred pages of our experiences with different therapies and therapists, supervisors, media and the emotional wrangling that went with it all. I remember being somewhat rebellious to what the experts had to say and was stubborn enough to want to follow our own path. I remember the parents with older autistic kids — there were two camps really — those who said that I was too early on in the autism process mill that “Adam is a cute little pischer now, but wait until he grows up,” to parents of even older autistic adults who quietly observed me and acknowledged the stage I as at, knowing full well that autism is something that will be forever a part of our children and our lives. I think I saw in there eyes some strain as well as some peace — the strain of being burned by autism politics, the strain of raising a child in a world that did everything to fit them like square pegs into a round hole. But also behind the strain was an aura of peace, of time leveling it all, of what we call acceptance for things that just are and will be. This is a part of acceptance that interests me — how people make different decisions and how time weathers us all.

I do not know what lies ahead now for Adam and I. I was a woman who was married and felt some refuge. Now I stand with Adam on my own, no less resolute but having to step back and take some quiet time for his sake and mine.  I made the decision to put Adam at the top of my list of priorities. For better or for worse, here I am.  I am proud of our lives. I am proud of how I’ve lived mine so far. I have no regrets. I cannot change the kind of person I am. I cannot change the decisions I made. We can’t make our husbands, wives or partners want to join us on the ride. Some of us move out into the world and try to make a change. I imagine this isn’t easy on all partnerships. Maybe I’d rather be that woman who makes decisions instead of letting life make them for her. Maybe women like me do not always fit into the world as it stands. Maybe the sense of “not belonging” is deep within me and has given me that will to fight for Adam’s inclusion in this world.

You see, no matter what side of the fence we are on, no matter what happens, this life we all live is so interesting. It is not interesting if we sit on the side-lines and take no stand at all, have no convictions or beliefs. I am baffled when humans get pounded on the head and then cower away (by the way, I took a recent post down on Autism and Laughter study not to cower but because what I wrote was not thorough nor thoughtful and will be the first in line to admit it). I am perplexed when people criticize us and we decide we are too tired to go on. Sure, life beats us down and we need to gather ourselves and that takes time.IMG00831-20090731-1608

But this autism mom, woman, writer, little girl, friend, dreamer, someone’s ex, daughter, cousin — and all the other things that make up who I am — will never, ever, ever give up. I don’t think it’s in my DNA and maybe, I wonder, this is why I have been blessed with Adam. Adam, who has taught me so many things and keeps making me a better, more thoughtful person. Adam will know that life not defined by taking the safe and easy road, but by having the courage to make decisions. My life is changing and therefore, so is Adam’s. His life will change and therefore, so will mine.  I am in the fog of the dust not yet settled, but am keeping a close eye on the pulse. For some of you, my blog may now be a bit boring because of my life change, for others, it may offer some place where we can share some common ground. For this is why we write. This is why we share our stories. When major things happen in our lives, even if we are beaten down, it is how we rise to the occasion  that matters.

In the words of Bob Dylan:

The Times They Are A-Changin’

Come gather ’round people
Wherever you roam
And admit that the waters
Around you have grown
And accept it that soon
You’ll be drenched to the bone.
If your time to you
Is worth savin’
Then you better start swimmin’
Or you’ll sink like a stone
For the times they are a-changin’.

Come writers and critics
Who prophesize with your pen
And keep your eyes wide
The chance won’t come again
And don’t speak too soon
For the wheel’s still in spin
And there’s no tellin’ who
That it’s namin’.
For the loser now
Will be later to win
For the times they are a-changin’.

Come senators, congressmen
Please heed the call
Don’t stand in the doorway
Don’t block up the hall
For he that gets hurt
Will be he who has stalled
There’s a battle outside
And it is ragin’.
It’ll soon shake your windows
And rattle your walls
For the times they are a-changin’.

Come mothers and fathers
Throughout the land
And don’t criticize
What you can’t understand
Your sons and your daughters
Are beyond your command
Your old road is
Rapidly agin’.
Please get out of the new one
If you can’t lend your hand
For the times they are a-changin’.

The line it is drawn
The curse it is cast
The slow one now
Will later be fast
As the present now
Will later be past
The order is
Rapidly fadin’.
And the first one now
Will later be last
For the times they are a-changin’.

ads
ads
ads
ads

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.