"There is nothing more difficult to take in hand, more perilous to conduct, or more uncertain in its success, than to take the lead in the introduction of a new order of things."

~ Niccolo Machiavelli, historian and writer

Monday, August 3, 2015

How Do You Know When You're on the Right Track?

"We all have a destiny, a dharma to fulfill, and there are endless opportunities, people and circumstances that surface throughout  lives to illuminate our paths."
~ Dr. Wayne W. Dyer
First, I have a confession to make - I love quotes. I collect them in fact. That's right, 56 pages of quotes in a Word document. But enough about that, I want to talk about this particular quote.

I would like to believe those words above are true, you see. It's not that I believe in fate to the exclusion of free will; no, not at all. I see it much more like opportunities opening up in your life, windows if you will. Little windows of destiny, perhaps, as you make your way through your life.



Always a choice.

Even though my father had been in a wheelchair from the time I was born and I had two severely challenged older sisters (who had been institutionalized before I was born); even though during my last year of Law School, I was diagnosed with a chronic medical condition ... despite all that, before my oldest daughter was born, I had always naively thought that persons with disabilities were taken care of. The whole social contract thing at work and all that; society doing it's part to help those who were not as capable of helping themselves.

My perfect little baby girl was 13 months old when she had her first seizure. The first of many, many, many seizures - I gave up counting after a while. As if these clusters of up to 100 seizures over the course of a week was not bad enough, we discovered that after each bout of seizures, she had regressed, lost some of the skills she had previously developed.

In fact, after her second bout of seizures, which occurred when she was 19 months, she lost all her words except for mama and baby, could no longer climb stairs and had "forgotten" how to play with her toys. She was still interested in her toys; it was just that she no longer knew what to do with them. For every toy that she picked up, you had to take it gently from her and show her how to use it, what it did. After you did this a few times with the same toy, it seemed to start to come back to her.

Although I had no clue at the time and despite my own childhood and family experiences, that was my first real introduction to the world of disability. That was the beginning of a journey that I know so many of you have taken. We each may have traveled our own paths, but our experiences are so similar in so many ways.

It's funny, though, I never really picked up and focused on my daughter's developmental delay until she was around 4 years old. I was at a support group (probably one of the last occasions where I sat through a meeting just listening, taking it all in without much to say) for parents whose children had epilepsy and my child was the youngest in the group; all the other children were in school. The discussion that night turned, of course, to school and the challenges these children and their families faced in that system. Up until that point, there had been so much of focus on the medical side of stopping my daughter's seizures that our family hadn't really paid much attention to her challenges. This is hard to explain - she was taking speech therapy and in early intervention at the time. so obviously we recognized these issues but ... they simply had never been the focus. The seizures were the problem, we believed. Stop the seizures and all will be well.

Well, the rest, as they say, is history.