"As long as the world shall last there will be wrongs, and if no man objected
and no man rebelled, those wrongs would last forever
~Clarence Darrow

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.

We all know what they say about those who ignore history ... that it will repeat itself. I hadn't exactly ignored history, I had talked at length to my daughter's specialists about the chances of having another baby with similar issues, what were the chances he or she would have the same (unnamed) condition as their older sister. I was repeatedly assured that the risk of having another child with epilepsy (the focus at the time) was very small - perhaps 1% or 2% higher than in the general population.

Reassured, we went ahead and had a second child. Who was fine. No seizures. Thank God.

However, as she got a bit older, I knew something wasn't right - despite her older sister's challenges and delays, my youngest was even slower in achieving milestones than her sister. I use to remember all the relevant milestones and the age at which both my children achieved them - it's interesting to realize that now I only remember a few - there were many, but all I can say with any certainty now is that my youngest was close to nine months old when she sat by herself and at the age of two, she still wasn't walking. I snuck her into her sister's pediatric neurologist, who diagnosed her with low muscle tone. No big deal, he said. She will walk in her own time. And so she did.

But still something wasn't right. I was very familiar with all the early intervention and speech tricks by then, but at the age of 4, I simply could not teach my youngest her colours. Blue, blue like the sky ... yellow, yellow like the sun and so on. Then she started having issues in daycare - refusing to join in with what the others were doing. Again, in Grade One, defiant, refusing to join in the group. Eventually, when she was eight years old, she was diagnosed with a non-verbal learning durability, (which, by the way, is the opposite of what many people think of when they hear the term).

But back to that quote.

I can't say exactly when, but at some point when my oldest was in elementary school, I remember feeling like I was on a train. I had no idea where this train was going, no idea of the destination. Yet, somehow, I knew I was on the right train on the right track.

I had given up the practice of law shortly after my oldest started having seizures - law didn't lend itself well to part-time work (when your clients want you, they want you), I told myself and my daughter ended up being hospitalized four times a year for 10 - 14 days at a time from the time she was 13 months until she was around 10 years old. So that was that. I stayed in the legal field (I seem to have an irrational love of the law) but no longer practiced.

Eventually, I had become sort of an expert in giving "parent to parent advice:". I received a fair number of calls from parents who didn't know where to turn with respect to their child's struggles in the school system (it was always school-related back then). Somehow, somewhere, they had been given my name and number.

All of which led me to discovering the strangest thing - when I worked with these parents, when I tried to help (whether or not we were ultimately successful) is when I felt like I truly came alive. Corny sounding, again, perhaps but it felt like when I used my personal experiences and legal background to try to help other families, I discovered the real me.

And, hence, the quote above.

I didn't *have to* put my efforts into trying to help these and other families; I didn't *have to* advocate for other children and I certainly didn't *have to" immerse myself in the disability community any more than what was absolutely necessary to me help my own children. And yet. there was such a pull for me to do this work (even though I wasn't getting paid) that I started to feel that this was right; where I was with my career and with my life, right at that moment, was exactly where I was meant to be.

It ultimately took quite a few years for me to, first, see that yes, if I so chose, I could at least try to have a part-time disability practice and then, once I realized that, to actually make that jump to practicing status after 20 years of not practicing. It was 13 months ago that I finally stepped off that cliff, not at all sure where I would land; whether, I was stepping into an abyss or my destiny.

Prognosis at this point: I think I took the right step.

Looking back, there were those who encouraged me to take that huge step and those who, basically, confirmed my belief at the time that, given my life circumstances (my own health, the needs of my young adult children, the fact that even though I had stayed in the legal field, I hadn't practiced law for 20 years, for heaven's sake), it was ridiculous to even consider making such a move.

Opportunities, people, circumstances ... I think in my case, it was more accurately circumstances, opportunity, people.

Oh well, you know what they say ... if you can't beat them (them" being, in this case, my dharma, so to speak), join them.

1 comment:

Unknown said...

I totally relate - I feel that many of my past experiences fed into the work I now do with people who are challenged. Working through the arts to make change is my destiny. Thanks for sharing!