I'm so excited about this next post. Can I just tell you that I love emails!! Love them Love them Love them!! Especially when they are from perfect strangers. This man Mike wrote me a few days back with some incredibly encouraging thoughts. When I asked for even more, this is what he sent back!! He is 60 Years Old and has Cerebral Palsy. For me personally what he said was incredible profound and helpful. Hope you enjoy his words of wisdom as much as I did!!
First, I'm an unabashed fan of doctors, but in my lifetime, like everyone else, I've experienced the good and the not so good.The good have been great, and the not so good we won't dwell on. But, always remember, for all of the good doctors are able to do (and especially for spina bifida...you can't imagine how much progress has been made in my lifetime..and I'm just speaking as an observer with regard to SB), doctors' knowledge is limited too. They can't predict anyone's motivation or determination or what they'll accomplish. In the end that's what will count most.
Next, understand that the world is a far more welcoming place for the disabled than it's ever been. Sixty years ago many disabled people lived as shut-ins. The phrase "disabled access" meant nothing and the world was far more hostile to the disabled. You can't imagine how much this has changed. Now, you're going to run up against people who may not be so nice (my heart broke when I read your Mall story; but the security guards were jerks and the man who complained about Toby's walker was a jerk (sorry), and there are jerky people out there), but you'll be amazed by all of the good people who are out there and they'll far outweigh the bad. As an aside, my wife also has cerebral palsy and she uses a walker too.
We just did our fourth cruise together (as a married couple, none before...darn) (in fact we went to Norway and were above the Arctic Circle for four of the twelve days...very neat) and everyone was wonderful to us wherever we went (on and off the ship). In our childhoods no one could have imagined that people like us would be traveling independently, doing cruises, and all of the rest.
Two more things...
You're certainly on the right track as far as expecting more and more of Toby. Never stop. The more he can do over time
the better. Remember too that childhood passes very quickly and he'll be an adult for a long time (relatively speaking, of course), and the more you expect of him now the better prepared he'll be for the future. The best thing my mother ever did was push school. Neither of my parents were college educated but my mother's big thing was math (and my father's too) and her 'philosophy' was "if you can do math, you can do anything." So, she ended-up with three kids with four advanced degrees (2 in math, 1 in computer science, and my PhD in chemistry...but my dissertation was very mathematical).
But here's the real point....disabled kids need to be educated if they're going to be employed and they need to be employed if they're going to be successful adults. Disabled kids aren't going to become police officers, firefighters, truck drivers, football players, etc...so they need to develop their intellect. Now's the time to start...and never give up.
Finally, let Toby be Toby. Always encourage his curiosity and the things that interest him. Just a few anecdotes.
As a kid I was always fascinated by fire trucks. As I got older (like around 10) my interest peaked as I met firefighters (by the way I live in Philadelphia) and learned more about what they did. At 11 I wanted a "fire radio" so I could listen to "fire calls" and my parents went along (although at different times they probably rued that decision). So began a fifty year love affair with the Philadelphia Fire Department. But here's the point...not only did it start a lifelong hobby, it also brought me into contact with many wonderful people who were role models and were very instrumental in helping to shape my own personal growth. I would have missed a lot had my parents discouraged this interest. And, the other big thing was the periodic table. At age 14, I became fascinated with a periodic table that hung on a classroom wall and of course, I needed a periodic chart (a big one, no less) on my bedroom wall (I have one on my office wall, I'm not a chemist my PhD notwithstanding, but at work I joke that I use it (the chart) to scare our financial people away). So I pestered my parents for six months (I had pestering down to a science early on) and I got the chart. This opened up a lifelong interest in chemistry, helped make me become a more focused and determined student, and eventually found my way to a PhD in chemistry at age 53. So, again, I'm glad my parents let "Mike be Mike." So, let Toby be Toby (with some boundaries of course).
Sorry for the long windedness...
P.S. One thing about my Ph.D. I started my PhD program in 1991 at age 41. For two years prior to that I was "hanging out" with a professor at a local university who encouraged me to pursue the PhD and who also became my thesis adviser.
Without question, one of the most wonderful people to ever come into my life. Again, encourage Toby's interests....you never know what doors will open up in time.