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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Thursday, August 21, 2008

 

Bottle That!

School is on the horizon -- for Adam and myself. Adam is beginning Grade One and I am starting Graduate School in Critical Disability Studies. Some people have written that they miss my blog and hearing about Adam, but I must admit, it's been nice to get busy with some other things that needed attention. Most importantly, a good dose of summer fun after months of health issues.

Since Adam was diagnosed with autism at 19 months of age, I had grappled with how much one-to-one "therapy" he needed. I thought, in the beginning, that perhaps our summers would be full of work, trying to "get Adam up to speed," whatever that means. I thought that for Adam's sake, maybe we would have to give up many programs and vacations in order that he wouldn't miss out on needed "therapy." I became familiar with putting him in programs, only to pull him out early for some one-to-one instruction at home. Did "getting him up to speed" mean getting him to talk, to respond, to understand?? If I was to accept Adam and autism, what was I doing, really? Were the ideas not in direct contradiction to each other? Of course, support isn't the same thing as "getting someone up to speed," because many of us have realized that we all travel at our own speeds, and let's face it, when it's over, we all end up at the same place. Supporting someone means enabling participation and contribution -- whatever that takes. It is more successful when we put forth a variety of efforts including individual support, constructing supportive environments, working towards societal understanding, and fostering diverse and inclusive communities.

It was only when I realized that Adam was understanding and then some, that I began to let go of some of the currently popular therapies, and sought out supports -- and suppoters -- where he truly benefited. I also began to learn that my perception of his understanding or what others believed lack thereof, was the result of his mode of expression rather than his understanding. I also learned that even the ways he comes to understand the world is often different than my pathway to understanding, but no less sophisticated. When I came to entertain all these possibilities: that he could go to school with his assistant and succeed even while expressing his autistic manner and needs, that others would learn from Adam and realize what a great person he was, that Adam has his own way of learning about the world, that I REALLY began to relax. Okay, sure, I always have that normal dose of parental worry -- no parent would be responsible without it.

At camp this year, a fully inclusive camp, Adam was declared the most popular kid -- tomorrow is Adam's last day at camp. Even among the male counselors, so young and unsure of themselves and how to deal with Adam at first, Adam brought a love out of them that everyone acknowledged as quite special. Kids recognized his intelligence, and everyone wanted to be with Adam, take turns with him, to be his partner in activities. Adam is no jock yet, believe me. His motor coordination has taken time. He is a careful observer, rather than an active participant in sports, but he is coming around. Counselors come over to Adam's cabin just to see him. His cousin -- who happens to be working at camp -- had reported the same claim. I thought, these people must be exaggerating, but I keep hearing it over and over again from a variety of sources regarding Adam's popularity. What parent wouldn't be happy about this? Can I bottle all of these positive experiences as Adam continues to grow into the world?

"If happiness could be bottled," said one of the counselors, "it would be all Adam." Now, while I like to think that maybe I had a small part in that, in reality, I have to say it's all Adam indeed. I think he's a special person, not because of autism, but because that's just the kind of person he is. Autism doesn't make him special. He is just a special kid. Maybe because he has difficulty talking, this affection might be his way to adapt and to create connection for himself with others. For certain, Adam wipes out every stereotype out there about autism, affection and connection.


ADAM WITH HIS SIBLINGS.




Adam came home always with a smile and a certain strut. I witnessed his confidence soar -- exactly what camp should do to kids. He is still a child who cannot talk, but in so many ways he can communicate fantastically. I am relieved that he did not attend a place where is LACK of ability would be the centre of attention at camp. I hear of way too many places that do. Of course, I would never send him to such a place, either. I have come to understand that a big part of my job as Adam's parent is to find supportive environments for Adam to be himself and grow.

So nearly five years have passed since those more worried days, but only this summer would we let go so completely while still offering support and enrichment as I enrolled Adam in his first full days at camp -- no real one-to-one at home, but instead, everything at camp, as we discovered that he likes to learn and be with kids. No more "therapists. No, we asked them to call themselves "Adam's Assistants," in order that Adam begin to understand that they were there for his needs, not there to remediate him. It is important for Adam and I to encourage others to support him and his right to communicate, and to help others understand and interact with Adam on their own terms without "helping" him. I thought that if Adam would need assistants on and off or always throughout his life, then Adam has to learn how to self-advocate now and learn how to employ assistants for his needs. Similarly, the peer-to-peer relationship and nurturing goes both ways. It does not seek to remediate the autistic person in order to have a relationship with others, as often so many autism social groups are conducted, but also helps others to interact and understand Adam in equal terms which is managed by some kind of subtle, personal negotiation between them. It discourages the helper-helpee dynamic and encourages respectful and equal relationships.

Back in the day of the Joy of Autism: Redefining Ability and Quality of Life event that TAAProject put on and popular in the press, I was constantly attacked by Canadian ABA advocates. "It's okay if she wants to let her son stay up until two in the morning," said Brenda Deskin, an ABA advocate here in Ontario who ambushed me on CFRB and falsely claimed her husband was a doctor on radio, insinuating therefore, she had more expertise than I (he is, in fact, a dentist). She would enmesh the word cure with therapy -- implying that I was doing nothing to help Adam while insinuating my negligence of him -- which was not only an assumption, but came off as a planted lie to influence others to her way of thinking in order that the Canadian Government reimburse her ABA expenses and allow ABA to be funded by Medicare in Canada. I am not one to endorse assumptions -- even of those who prefer ABA therapy in order to influence opinion, and I am most definitely not against support, as so many ABA advocates in the past have stated. I am an advocate of support of all kinds that works for autistic people and helps families understand autism, but I am also a supporter of choice for families. I have nothing against this individual and her efforts and cannot comment on how difficult her life is or isn't. Yet, I've always had big issues with the way in which parents "advocate," because my son will hear it. There is a way to express difficulty that doesn't put the blame solely on our children -- maintaining their dignity and also saving ours. I do not wish for Adam or any other disabled person to hear it, and yet that kind of "burden" talk will go on. No, Adam must learn how to maintain his dignity and poise in a sea of ignorance.

I took a trip this summer with some friends for Henry's fiftieth birthday.
A very good friend of mine who has two disabled children, one with Downs syndrome. Around the table was a genetics counselor and other friends who do not have disabled children. For some reason, the way my friend tried to convey difficulty was different than mine and the dialogue became progressively emotional with every sip of wine. When I try to explain difficulty, I explain it not as the result of the child, but as a result of a world that is still ignorant of disability and does not yet understand the debilitating nature of pity conveyed in a media-driven world that plays commercials every half-hour or less on curing something to raise money for some kind of charity in support of research. The idea of being less-than-"perfect" seems to be quite a despicable state in our age, if you believe many of these commercials.

My friend was saying the same thing as I was, except that it seemed to me, what was inadvertently expressed, was that our children's disabilities was the source of the difficulty. Of course, a result of my nature and an awareness of disability representations on the popular psyche regarding disabled individuals and their value in society, I couldn't help but to debate the perception, in fear that that's how those without a disabled child might think she was saying (which she wasn't but the complexity of communication is very difficult to maneuver. I must admit that I have difficulty letting such topics just go, not because of my friend, with whom we share many similar opinions, but, as I said already, by the way the rest of the table may have perceived the discussion and the nature of disability).

In the midst of the conversation talking about genetic counseling, I had noted that 80-90 percent of fetus' identified with Downs are currently aborted, while also pointing out the lack of advocacy from parents in that counseling room, like my friend and I, on the great lives we live with disability, at which point, my friend broke down. To make a long story short, we both ended up outside hugging each other. She felt destroyed by the statistic. She said, "when you said that percentage, I lost it. That means there will be no more D's (her son's name) in the world..." and noted how it was so unfair. We acknowledged how much we love our children AS THEY ARE and we very much respect each other and our children. While she felt distraught that societal ignorance will always exist, it further strengthens my resolve to be involved with inclusive initiatives, no matter how long it takes. We are, as friends and parents of disabled children, working together in our own community regarding attitudinal change, family and person-centred support, and a more inclusive community. In my view, such an event demonstrated how parents CAN come and work together.

If I could put my summer experiences in a bottle, or in fact my experience from this year alone, this might be the year of learning valuable lessons, of accepting many views, many parents, many people, and figuring out how we must all work together.

Adam, thankfully, is happiness, personified. He is still young, and happiness may grow with a tinge of frustration, maybe even sadness, but it will hopefully strengthen his resolve to maintain a strong view of himself, and continue the work that still needs to be done.

5 Comments:

Anonymous Anonymous said...

I couldn't agree more with what you wrote. We all are friends and parent's no matter if the child has a "label of Autism or whatever it may be." Who cares! What ever happened to human kindness and a caring heart? God love's everyone no matter what the "Label". My son has Autism, but like you My Son comes 1st. He is a happy, loving, brillant child. Everyone is Different it is what make's us unique.

2:06 PM  
Anonymous farmwifetwo said...

I've just finished the book "Autism and the Myth of the Person Alone". Concluding Notes, Douglas Biklen pg 280 "Curiously, none of the contributing authors cites behaviour modification as a key to his or her own development".... "And yet the principal element of each person's emergence into social participation has not be behavioural training; it has been inclusion."

Says it all doesn't it. Although we have done schooling this summer. We started redoing the Gr 3 math curriculum in Dec and will finish it about Oct, just in time to start Gr 4. But the eldest is mainstreamed not included so... we need to do extra.

Little boy redid the years spelling, one week every day, some extra math - need to make up a slide on a ruler to use as a numberline somehow - and lots of reading. We're fans of Anne Rockwell who writes children's narrative non-fiction and others.

Formal homeschooling for both kids was completed btwn 9 and 10am and one working at a time... not a lot but enough.

S.

4:49 PM  
Blogger Club 166 said...

Glad to hear that your summer went well. I'll be thinking of you as I, too, go back to graduate school.

Good luck! And have fun.

Joe

8:53 PM  
Blogger Phil Schwarz said...

"It is important for Adam and I to encourage others to support him and his right to communicate, and to help others understand and interact with Adam on their own terms without "helping" him. I thought that if Adam would need assistants on and off or always throughout his life, then Adam has to learn how to self-advocate now and learn how to employ assistants for his needs."

"Similarly, the peer-to-peer relationship and nurturing goes both ways. It does not seek to remediate the autistic person in order to have a relationship with others, as often so many autism social groups are conducted, but also helps others to interact and understand Adam in equal terms which is managed by some kind of subtle, personal negotiation between them. It discourages the helper-helpee dynamic and encourages respectful and equal relationships."

This says it all. Even the best programs sometimes need to review what they do and how they do it, through this dual lens.

Both parts are important: (1) the development of self-advocacy skills, in particular in the employment and management of assistants and assistance; and (2) the development of reciprocal, egalitarian social skills on the part of both autistic people and the nonautistic people in their lives.

I'd like to forward these two quotes (and maybe anything you'd like to expand upon further on these two points) as suggested staff training material to the leadership of the (excellent) summer program which Jeremy has attended for several years, and in which Rachel has been a counselor for the past few years. (The executive director and director of consulting services are also board members of the AANE; you may have briefly met them when you visited MIT and Boston last year.) The staff training materials already include a number of very good readings and media from the autism self-advocacy literature.

And oh yeah, congrats to you and Adam on your upcoming school years!

8:07 PM  
Anonymous Anonymous said...

I was born in Australia in 1959, with Autism.I grwe up in a home for retarded kids, everything from downs syndrome to Autism, and all points between,I did'nt speak untill I was 7, and from there It was deemed best to meet and live with my father and sister. Believe it or not, I could communicate much better as a child, than as an adult. Although non of us spoke, we had basically use of all the other many.many ways to communicate. When the spoken word was used around us, we all had to concentrate very hard to get it right, or we'd get a swift smack.When the adults left again, we could all breath a sigh of relief. My point is that being Autistic does'nt mean no communication or understanding, it simply means these are done in many other ways. I strongly believe that the process of trying to understand the Autistic world is too much take, and not enough give. If you sit in silence for an hour or two, and your friend drops by in a calm mood, there will be liitle said for the first 2-3 minutes, wether your Autistic or not, but there is still a clear line of communication going on. I would encourage everyone to remember that sometimes the Autistic methods of communicating and processing stuff is because many of us have a hypersensitivity to stimulli, and can get easily overwhelmed by the flash,bang and gaggle of life. Try hard to be more sensitive to this stuff, as many of us have had to learn to deaden some of those senses to live in this world with everyone else. Love, patience and a new way of thinking about communication will surely help all of us to continue to grow as individuals, wether we have Autism or not. Thanks,Tony Kerr,Austin TX.

6:05 PM  

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