What A Difference A Year Makes

Adam in summer 2007




Adam admiring a boat December 2007


Adam swimming with life jacket early summer 2007


Adam swimming without life jacket end of 2007.






What have you learned in a year? What has happened in a year?

It's what I come to think of when I look at recent photos of Adam and realize that nearly 6 years have gone by since his birth, a little more than four since he was diagnosed with autism.

I have had a lot to learn and a lot to say since then. It's exciting to feel as at home and at peace with life as we know it, and I often think about those early days (maybe some of you are experiencing them right now), when we possessed a lot of fear and our days were obsessed with trying to make Adam less autistic.

Long gone are those days useless days of fear as he succeeds as an autistic person. I can't say I'm a proud autistic person, but I'm certainly the proud mom of one.

Anyone want to write about what a difference a year has made for you?

Doctors Speak Out Against ABC Autism Program (but ABC refuses to listen)

Tomorrow night, this program will air on ABC. Today, our Toronto news media have spoken out also against the airing of the show, stating that "ABC will have the deaths of thousands of children on their hands." Entertainment or not, ABC should be held responsible for the perpetuation of fear and inaccurate information that vaccines cause autism, which for a long time now has been disproven by science.

But many of us know, that empirical evidence means nothing to marketeers who have so much to financially gain from "alternative medicine."

Of course, as an individual who speaks publically about how the media does damage to autistic people, perhaps we can all send an email to ABC stating whether under the guise of "entertainment" or not, the proliferation of inaccurate information is damaging to millions of individuals. Email ABC here to post a comment on their message board.

"I wish to propose for the reader’s favourable consideration a doctrine which may, I fear, appear wildly paradoxical and subversive. The doctrine in question is this: that it is undesirable to believe a proposition when there is no ground whatever for supposing it true.”

-- Bertrand Russell, 1935, On The Value of Skepticism

Another Milestone

Adam lost his first tooth today while eating his chocolate ice-cream bar for dessert. Were it not for his wisdom in passing it to me -- this hard thing the size of a kernel of corn that I thought was a foreign object in the ice-cream, I would have never been able to store it in the silver-case-for-first-teeth someone gave me when Adam was born. I keep every first -- first pair of walking shoes, first outfit, first lock of cut hair and now, first tooth. Of course, I was excited as Adam lolled his tongue around the empty spot, then his finger -- the feeling so foreign. I showed him his lost tooth in the mirror and he smiled. We wrote a story about it and that the tooth fairy that leaves money under the pillow to buy candy (so he can lose more teeth), in the morning. Then, I pulled out the Brother label maker and we had a little bedtime conversation I wish to share. While Adam's verbal ability increases little by little, he has a difficult time with conversation and full sentences.

"Adam," I proceeded to ask, "what happened today?"

He typed, "I lost my tooh."

"How does mommy feel about that?" I asked.

"Mommy is proud," he wrote -- all on his own.

He then typed out some other "feelings" he has been learning on the computer such as sad, angry, ecstatic. I realized these were the feelings he is learning from this particular program to which I said, "that's right, we were talking about mommy's feelings and those are feelings too."

Adam had spent the day playing at his friend's house -- with Daniel and his brother Brandon. He had spent nearly five hours there and I had left him there to play. He did not wish to come home (nor did I blame him after four days being cooped up at home with the flu). So, of course I had to ask,

"How do you feel about Daniel?" to which he replied, "I like duno." I guess names are a little more difficult to spell.

I've been watching Adam play on his computer, read books since he has been nine months old, copy words from reading to paper (even though his hand-writing is still difficult to decipher). And all it has taken is a little concerted effort, some directed questions, a Brother label maker, and a child's electronic dictionary. Okay, and a literacy program, and a good inclusive school, and some great people who work with us every day.

For this mom anyway, having conversations no matter what the form, is just as exciting as the lost first tooth.

By Design

Tomorrow, Henry and I are hosting a conversation dinner on the buildings we admire with the purposes of how we wish to develop our city. It is something I used to be passionate about as an art curator with an avid interest in public spaces. Living in Canada was always gray in the winter, with mediocre architecture. North American design has often been about about economy, efficiency and utility, while beauty has been considered a frill. Only our houses of art and music that have been sponsored by wealthy families have been the most inspired -- like old cathedrals. Perhaps our universities have brushed us lightly with a molding of history here, an arched doorway there. Canada does not have a lot of history.

So I had to think about my favorite building and what I came up with was a myriad of public spaces -- many of them in Europe that I encountered while living such as the Freiburg market where I used to buy my seven-dollar broccoli on a student budget. These markets are always near the city halls and cathedrals. Cathedrals were places where the public slept, commiserated, socialized and exchanged goods. When I was alone in Europe, the Freiburg cathedral was a quiet place to think in the evening. During the day, the market hummed with voices and the smell of coffee invited breaks at umbrella-tables outlining the cobblestone square. It was a place where people gathered everyday, and where the brautwurst-stand provided a student with a cheap meal. It was this culmination of everything -- grandiosity, history, beauty, commerce and community that continues to make it a successful public design.

Whenever I am out these days, I always look for accessibility that reflects our values and our community. I look for curb-cuts, easy access for people in wheelchairs, or for moms with strollers. I always look for nature, for beauty and that which soothes us. I pay attention to the piercing noise at malls -- as I feel assaulted with beaping vehicles, music blaring from within and without stores, and the scents of many things -- all indoors. I am painfully aware of the lack of access to malls on foot, to many of our food stores. Sometimes, it's just too hazardous to walk, and in Toronto, the pedestrian no longer has the right of way, even though it is still a law.

We have built villages for cars -- not for people. When I see people think about design, I really appreciate it. From well-planned classrooms to an outdoor market, I feel a sense of relief. When I see a well-designed (barrier free) environment that soothes, rather than built with steel-like utility, I feel that the person for whom it was built was respected.

I wonder if the lack of access and thought about aesthetics not only reflects our thinking about the disabled, but also about humanity, as it doesn't seem that we truly respect ourselves and our need for each other. We certainly are not building for it.

"How is a village a village? By including young and old, white and black [disabled and non-disabled], rich and poor." -- Anonymous (brackets mine).

The Burden of Proof

Adam and I have been busy. He's typing out more sentences and we're talking a lot about how he feels about things (as opposed to the barrage of questions about what he knows which is a very ABA way of questioning children). Even though I know Adam has a lot to say, there is always more than what I think I know, which is why parenting is humbling experience. Adam likes Van Gogh's "spots" (referring to pointillism) he said to me yesterday. Then, in writing on a keyboard later he said, "I like the ocein," when I asked him what he liked about Florida. Even though a parent can intuitively KNOW one's non verbal or quasi verbal child is intelligent, I think we can't really know what lies within anyone until it is expressed. I am not saying do not assume a person is intelligent or that they are not communicating without words - we know that communication is more than words. It's just that words and symbols are very powerful.

These moments of clarity, punctuate my belief that to really know one's child is an act of guidance and then ultimately in letting-go. We just do not know, therefore we must be very aware of our own limits in thinking about things. It is why we have the phrase "make the least dangerous assumption." It is why I believe that our children are so incredibly awesome. It is, if I were to talk esoterically about knowledge, the difference between creating changeable frameworks that we apply to all kinds of things for our own understanding, versus realizing that nature and humanity cannot be framed. Every time we try, the picture shifts. So imagine the most amazing things!

So now I am going to explain how I felt when I took Adam to a popular horse-back riding program here in Toronto for kids with special needs (not the subsidized one so I'll keep you guessing). Adam, who is averse right now to putting on things around his ears, had a riding helmet thrown on his head as soon as we arrived in a big barn on a cold day. A big strange guy came up (we're talking on his first day), and threw him onto a white horse, without even introducing himself. Whoa! I expected them to introduce Adam to the horse, let me come along for the walk, get used to the helmet. I did not even expect that Adam would be on the horse the first day!!

"We know what we're doing, " the big-guy said to me, trying to reassure me. "Don't worry," his partner joined him from the side as Adam was swiped away from me high on the horse's back. "We work with autistic kids every day." That was a red flag. I felt my innards tense. Anyone who says that "they know what they're doing"...be forewarned. It is the reason I am writing this post. None of us knows a child that well.

Adam cried and cried and cried. "I want to go...I don't want to!" he bellowed as they said "touch your legs." And he did -- in the midst of crying, his little round face all red, his eyes tired of not being listened to, yet responding to them obediently in hopes that they would finally listen to him.

"Say, 'move on Snowman,'" they asked. He would have said anything to get them to let him off the horse. His little voice was becoming raw, and still so small and fragile. "Move on Snowman," he said between gasps of mucous-filled air.

Now I'm getting pissed (with myself and the situation), while hoping that maybe he might calm down and begin to enjoy himself. I am putting on a fake smile, waving at him, trying to reassure him that I'm right there at the end of the long barn. I am feeling pressured from our old ABA days that I'll be judged for wanting Adam off the horse, and am distressed at my uncertainty at this point of what to do. I hate those stares I get from instructors that I am just the mom and they are the "experts." There are some of you out there that I'm sure will know what I mean! How terribly arrogant those stares can become.

"Is your child high or low functioning?" asks one dad as he approaches me while I am absorbed with Adam and his safety. I feel like I'm on the wrong planet, in the wrong place. Is it worth it to go on a diatribe how there's really no such thing as I listen to his feet squishing towards me in the mud. Do I need to justify Adam's intelligence despite the fact he is autistic? I move away and end up responding with little interest, "I don't think of him that way," and leave it at that. The dad looks confused as I leave him in the muck infused with the scent of horse.

I mumble in hopes that the parents who tried to also reassure me: "Yes, we remember when our kids cried in ABA," would hear me as I said aloud to myself, "They don't respect him. He is saying he wants to go." Yes, I am doing it on purpose, but also because I am feeling under attack. I move away and focus on my Adam some more, sucking in the air between my teeth, pondering my next move, feeling their eyes on me, then back to their own children. I watch the other kids as they obediently follow directions. Yet, I don't want Adam to just follow directions. I am proud, actually, that he remains upset and tells them that "he doesn't want to." I am not happy he is upset, but at least it is human. His will has not yet been broken.

"Can I get him off, please?" I ask the two 'instructors,' not realizing that this was an ABA horseback riding program. At least it wasn't stated on their website. They look at me as if my intervention will blow their break-the-kid's-will-and- they-will-begin-to-enjoy-it-approach to obedience. I pull Adam off the horse and also take the helmet off that has been visibly bothering him through the entire ride. His pants were bothering him and the instructors didn't help him out or even acknowledge his discomfort. "Walk on Snowman," and "touch your legs," seemed top of their agenda. Adam's responses pleased the instructors. After all, isn't much of the purpose of intervention to please the adults who do it? (Pause for self-reflection).

"Calm down Adam." I crouch to his level and pat stroke his head, being very quiet. He stops crying immediately. "Let's look at Snowman together." I pat Snowman, I wear the helmet. Adam is watching me. "Do you think you can try again?" He pulls away, but I ask him to give it another try. We are not the giving-up kind of folk. He tires of crying as he whimpers, still very unhappy. We finish quickly after that.

"Many of our kids cry like that and eventually they get so tired of crying they begin to enjoy it," says the big-guy who has decided to follow us to the car. Adam's hands feel like ice and I am anxious to get him warm again. I am trying to give the "go away," body language. "Uh huh," I say un-enthused. I want to attend to Adam whose eyes are still red and watery.

It just may be that the kids learn to enjoy it -- the big-guy might be right. In fact, I don't doubt it. Yet, if Adam had been given time and patience, he may have gotten on that horse willingly as I have put him on ponies many times before. Adam loves so many things and he is usually not averse to new experiences.

But when I was EXACTLY Adam's age, my dad also put me on a great big horse and I freaked out. BECAUSE I COULD SPEAK AND WASN'T LABELED AUTISTIC, he took me right off and respected my desire to have nothing to do with horses for a while. I may have gotten used to it if someone forced me. But forcing wasn't the point. Forcing Adam has never worked for him (or me for that matter). Patient introduction and persuasion helps us get through the fear-factor. With myself as a child, I eventually wanted to do it on my own. I have a healthy respect for horses and don't ride them often.

You see, I wanted Adam also to enjoy himself. We get sick and tired of therapy. Everything for disabled and autistic kids is "therapy." You can't find ONE program -- be it a music teacher or anything unless it is labeled as "therapy" therefore "making the child better" [than they are]. We are not looking for therapy anymore and I hope there are clinicians and professionals reading this in order to be hired as teachers, not therapists -- people who can open up new worlds and help with filling in gaps where we need extra help, and hopefully who have fun engaging with Adam. We are looking for equal opportunity to learn and be a part of many programs. We are looking for a chance to learn new things. Adam wants to be with other kids. We are looking for people with patience and maybe some understanding of the nature of autism and an understanding of how Adam might be good at learning these new things.

Because he's autistic, and I have to assume this as I did not see evidence to the contrary, those instructors ignored his requests, they didn't give him a break until I intervened, nor did they understand Adam's NEED, be it because of autism or not, to be gently introduced to the idea of riding horses.

Finally, I am upset that ANY therapist has such control over us as parents -- that they make us feel unsure about our parenting. It is particularly so right now in our autism community. Those seeds of doubt must exist in every parent. Be it from teachers and other people in positions of authority telling us parents what our kids should be doing and how they should be doing it -- parents need to have greater confidence in the way they want to parent no matter what kind of child they have. This might be even more important for parents with special needs children to assert these needs and desires.

In autism, and I introduce this sentence as such because that's what I am on the journey with, there is a difference between teaching skills and letting a child know their value and enabling expression. One cannot exist in isolation of the other, yet too often the focus is always on teaching skills. So here I was, standing there, letting my gut wrench primarily because I didn't realize that the "we know what we're doing" people were practicing ABA. And if they didn't do it knowingly, they did it anyway. They assumed that Adam should comply with their requests, to prove and show what he knows. Some might call compliance a form of skill-teaching or a basis from which to learn new skills. This program wasn't about enjoyment. It was about obedience. Adam had to prove himself in an environment that expected little of him, with people who cared nothing of him, and who thought that they knew everything there was to know [probably] about autistic children. That is the world that we are creating for autistic people, folks -- a place where all of Adam's energy must be placed on proving his value and his intelligence, not enabling and valuing his expression, or letting him move on in life without the burden of proof.

Needless to say, we won't be back there. Who knows if they have truly created a horse-aversion for the rest of Adam's life. Yet, we will try again another time, if Adam wants. Some experiences we try end up being terrific. We try regular programs, "special" programs -- some are good and others not. Yet, I have to say, I am grateful that Adam does not go to an autism school, at least here in Toronto. I would fear that he would always be so incredibly underestimated.

Resolutions and "Realities"

"The systematic denial on science's part of personality as a condition of events, this rigorous belief that in its own essential and innermost nature our world is a strictly impersonal world, may, conceivably, as the whirlgig of time goes round, prove to be the very defect that our descendants will be most surprised at in our own boasted science, the omission that to their eyes will most tend to make it look perspectiveless and short." -- William James

The wind is blowing in Toronto today. Up to 100 kilometers per hour. Just the right kind of wind for me -- the strong wind that can clear the cobwebs and symbolize new beginnings.

And so I wish you all a Happy New Year. I started mine with a health scare (my brother-in-law welcomed me to the perils of "middle-age")which is why I haven't written that much over the past month. Turns out I'm going to be okay. In the meantime, I spent the holidays so happy with my Adam. The way his hair swept in the breeze, the way he smiles and is so affectionate with us all. At the sudden possibility of my becoming very ill, I wasn't scared about the "future of Adam" anymore. I know, it sounds strange. All our time as parents and we fret about who is going to "take care" of our children when we're gone.

I had to spend the last four weeks wondering and preparing for just that. While I was certainly, upset, that people compare autism to cancer in my situation and the circumstances of my mother who has gone through cancer twice now, I was scarred at only having to possibly MISS Adam's future and all of his remarkable and ordinary moments. And then, considering that there are things simply out of our control, I thought that the one most important obligation we have as parents, is to have faith and let go of our children -- no matter what their "needs." I don't mean to give them to institutions -- heaven's no. I mean to believe in them and let them grow without strangling them with our selfish worry.

I had to think of the possibility that I would become very ill over the next few months. I had to think of all the people I have faith in, and with who Adam has forged his own relationships with, and rely on those people and Adam to continue. I had to drum up the trust I have in Adam, even with his age and vulnerability -- that he would have to "speak" for himself in whatever manner he would.

While I waited for my tests, I spent time enjoying Adam, reading books with him, still teaching and guiding as parents do, but I was very relaxed with him. We had lots of fun and he began to speak more. He wants to play with other children and I enjoyed watching him make his own kind of initiations. He played a terrific Simon Says. We snuggled on the Florida beach where my in-laws live, watched some thundering waves, and we were very content. I'm not saying that it was just my being relaxed that Adam "progressed" (in fact I'm tiring of that word because every human being evolves and the brain is malleable and fluid and everything always changes). I'm saying that we were relaxed and as a result, I probably could just SEE and appreciate more in and of him.

As part of my commitment to my son, I will finish my book this year and spend more time playing with him. Playing music, ball, Simon Says, and other marvelous games. Not to just "teach" him, but to be with him. I truly enjoy him. I think learning comes from being with and doing things together. When we spend too much time hypothesizing what autism is and why autistic people do what they do, we tend to miss everything. We imprison autistic people to our low expectations, often based in false or ever-evolving theories, and we so limit ourselves to the many possibilities and gifts that people -- all "kinds" of people -- bring us everyday.

You won't see me engage in every autism news item this year. You won't see me publishing the derogatory comments that I sometimes receive from others on this blog, and you won't see me respond to questions on how to "treat" your autistic child, or acknowledge how you think I should raise my son. You see, I expect Adam may read this one day. I have personal difficulties in making any suggestions as to how someone else's child should be raised because the same choices in raising any other child also belongs to an autistic or any other disabled child. No government-mandated and segregated "autism program" or "surveillance list" will limit us or our options, and Canadians might wish to rethink the backwards direction such "programs" may be taking us. If anything, I will celebrate our children with you, share in the challenges created by obstacles unnecessarily placed on front of our kids and the adults today who are paving their way.

This blog speaks for itself and for the way our family lives and the choices we've made. The last thing we all need is another "expert" in the overwhelmingly vast sea of false ones. God knows it is those "experts" that compelled me to write a blog and a book in the first place. I will work with others who wish to improve the quality of service, education and inclusion for their children -- which, in my opinion, should be based on the inherent and natural being of the autistic person. That, dear friends, is called FREEDOM. Freedom to be, to roam, to have the education one deserves. I believe in working steadily and diligently in bettering opportunities and changing attitudes, but not worrying in order to "make things better," or "to get more services."

We will hear different interpretations of life with disabled children and they will collide with the interpretations of many other autistic and disabled individuals. One person may ardently claim for "scientifcally proven treatment" based on their "reality." Another may claim their right to freedom -- the freedom to be disabled or or the freedom to have options for their children and for them to be included in schools and society. Wallace Stevens said "reality is the product of the most august imagination." We assume there is only one reality, one code, one cause, one "scientifically proven treatment." We have believed that one day, science will solve everything, says Jonah Lehrer (his last names ironically means "teacher" in German) in his book Proust Was a Neuroscientist. Yet, life as in art, is what we make of it. It is how we paint, weave and write it. And from such constructions, science attempts to deconstruct life -- from how we experience it. Lerher points out that artists like Walt Whitman and George Eliot "witnessed the birth of modern science...[they] contemplated Darwin, Proust [and] Woolf admired Einstein -- they never stopped believing in the necessity of art. As scientists were beginning to separate thoughts into their anatomical parts, these artists wanted to understand consciousness from the inside. Our truth, they said, must begin with us, with what reality feels like."

The challenge of the year as I see it, begins not only with scientific deconstruction, but with listening to experience, particularly the experiences of autistic people. Their art, their writing, their political activism are not pretty little pieces or trite ramblings we can consume on the margins and forget about while the scientists do the "big" work and enjoy our research dollars. Both art and human experience must inform science, not the other way around. It is perhaps this trend to view medicine and science as the explanation for all things human, the faith in "scientifically proven" and the marketing and the money that gets poured into such promises, that disturbs me most of all. For there is no code that is written that can truly illustrate or explain every human soul.

"Science needs art to frame the mystery, but art needs science so that not everything is a mystery. Neither truth alone is our solution, for our reality exists in plural." (Lehrer)