Tara, Billy & Pioneers

I am not a professional blogger. There are people who have made a living from sharing their words with the world and make money doing it. Of course I would love to make money doing the very thing I love and am passionate about, but I struggle with it all the time. Would I be selling my family's privacy? Will my boys someday hate that I divulged so much that was personal and intimate with virtual strangers? Writing this blog has become cathartic, but that means that sometimes I just write what's in my head without giving much thought to who might be reading it and whether or not I am offending someone, or crossing a line or hurting someone's feelings. Every now and then I get feedback from someone that makes me remember that I'm not just writing this for myself, that people are reading my thoughts and it sometimes evokes thoughts of their own. Yesterday I heard from Tara.

Tara had been in my class since the 7th grade and I had always admired her. She had a sense of maturity that was beyond anyone else I knew at that age. When the rest of us were spending our free time in part time jobs in retail, in sports, or just in improving our social life, Tara was volunteering her time with a girl named Lily. Lily had special needs and I had never before been exposed to anyone like her. I'm not exactly sure of the relationship, but it appeared to me that Tara acted as a "Big Sister" to Lily. I remember Tara's remarkable calm and confidence when she was with Lily and the obvious affection they both had for each other. I remember thinking how lucky Lily was to have a Tara in her life. In the summer before our last year of high school, Tara told me about a summer job that she would be returning to. Shadow Lake Camp was a residential summer camp that serviced all ages of people who had an intellectual disability. I jumped at the chance to move away from home for the summer to work there too. What an eye opener.

That summer really changed my life. I worked as a residential counsellor to people with varying disabilities from brain injuries to Down Syndrome. I learned about being responsible for people's health, well-being and happiness around the clock. I learned to see people for who they are and never underestimate their abilities. I developed a fierce protectiveness for my new friends and could no longer accept people's casual jokes or disrespectful use of the word "retarded". I remember one of my campers who had Cerebral Palsy that left her unable to speak. Let's call her Becky. Her poor body was painfully twisted and gnarled yet she always had a smile on her face. She insisted on being wheeled into every activity regardless of whether or not she could participate. After a few days, I figured out that she could write. We used pen and paper to communicate and it was only after our first exchange that I realized that this girl had enough personality for 10 teenagers. We would argue and banter like sisters and she would put me in my place. She could become angry and bitter at life's injustices, but could quickly banish the negative thoughts with a sharp wit. She made me appreciate that you can't judge a book by its cover and that there are times when life really does suck and it's easier to admit it than to pretend all is fine and dandy when it's not. As long as you off-set your pessimism with a laugh, you'll be okay.

After my summer at camp, I came home with the desire to work in the field. I worked my way through my last year in high school doing the overnight shift at a group home with five residents who had developmental disabilities. I believed that it was my role to 'care' for them. None of the residents were verbal and most of my time with them was spent providing support and tending to their needs. In all of my training for the job, I don't ever recall being trained on how to teach or engage them in any truly meaningful activities. Their days were pleasant enough but very routine. Every day seemed like the one before, revolving around physical therapies, eating, bathing, sleeping, some crafts and some chores that were assigned based on their level of ability. There was the occasional field trip or outing and random visits from family members. I moved on to university and not long after, took up another job in a larger residential group home that housed 20 residents. I think back to their vacant faces and remember the line-ups at the med room door where everyone waited for their daily prescriptions. I remember one young man that I had such a soft spot for. We'll call him Billy. I can see him in my mind now. He always wore sweats and we had to cut the tags out of all of his clothing. We had to shave his face with a straight razor because he couldn't tolerate the electric anywhere near his head. He had the most beautiful, gentle sky blue eyes that you'd only see in little darting glances because he would rarely make eye contact. While everyone else was engaged in a group activity, he would be in one of two places in the house. Either standing against the wall in the common room, rocking from foot to foot while lightly tapping the heel of his hand against his temple, or he would be standing at his bedroom window, staring outside. Every now and then I might be successful in coaxing him into trying something different, but it would only take someone else's raised voice to send him over the edge and he would run shrieking into his room, slamming the door behind him.

I don't remember hearing the word autism in those group homes and if it was used, it was a dismissive label that was used secondarily to a prognosis of developmental delay. I felt deep compassion and care for them all, but if I'm being totally honest, I didn't view them all in the same way I thought of Becky. To me, Becky was trapped in a body that failed her. But I fell into the trap of believing what they told me in the group homes. That all of the residents were developmentally delayed and could probably not learn and most likely didn't care about what was going on around them. This may have been true, but I would argue that the medications they were on significantly contributed to this fact.

This brings me back to Tara and the blog. Tara has gone on to continue being a remarkable woman with three children of her own with special needs. Facebook reconnected us a couple of years ago and she has continued to inspire me. I hope she won't mind me sharing part of a message she sent to me:

As I read your frustrations, I was reminded: 20 or 30 years ago, our children
would have been institutionalized as the norm, they would not have been schooled
and, in the not too distant past, they would have just been left to idle. As we
fight for the best for our kids, I sometimes need to be reminded that it just
does not exist. Society is changing and our generation is the one pioneering the
way for our children. It does not help the frustration on a daily basis but I
believe that, one day, the services will be there because we fought for
them.Good Luck

Her message made me cry. How true this is. I have thought the very same thing so many times. Our children are in a limbo generation. We are kicking and screaming to prove all the old stereotypes wrong. People with autism are not all violent, unthinking, unfeeling or uncaring. Incapable of progress or love. When supported in a loving environment and by people who believe in them and their potential locked within, most of the kids can go on to be very successful and lead fulfilling lives with loving relationships. In the last year, my view on autism has done a 180 degree turn and I believe wholeheartedly that autism is not what we once thought it was; a neurological disorder, a miswiring of the brain caused by genetics. I believe that our environment and toxins are causing an epidemic of assaults on this generation, resulting in inflammatory diseases including autism, asthma, allergies, ADHD and the list goes on. I heard it said somewhere that someday future generations will look back at our kids and say "oh my God, what have we done??!!" What's it going to take before people take notice? When the stats show 1 in 3 kids diagnosed with autism? I could live with autism if I didn't believe that it is an illness of the whole body. Perhaps not every person with autism is affected in this way. But I believe that my kids are proof that there is more than just a miswiring going on. I don't want to turn this into a rant about biomedical intervention. But it is these thoughts that break my heart when I think about all of the Billy's that I have known or that are out there or who have come before my children. It is a tragedy of epic proportions that the Billy's were left to idle, as Tara says. I feel sick with sadness when I let myself think about all the thoughts, desires and emotions that were locked inside their heads, unable to come out. The rocking, the shrieking, the head banging.. were they all signs of pain and frustration and not simply 'autistic behaviours'? And if they were signs or expressions of pain, how can we live with our shame in knowing that we did nothing to help alleviate it?

I thank God that my kids have more opportunities than they would have had 20 years ago, that I have tools and strategies available to me to teach my kids, that parents would not have had decades ago. I am grateful for what I have and I shed many tears for those who have not had these same opportunities. But that doesn't mean that I don't want more for them. It does mean that I will alienate people along the way, particularly people who think us autism parents are pushy, demanding or greedy. That think "what makes them think they're kids are so special or deserve more than any other disability". Well, if I took on that same attitude, then I would be satisfied with putting my children in institutions and perpetuating the cycle of stereotypes. I don't care what people think of me, because I don't matter in this. One day my kids will thank me. I know they will.