The rites of passage may mean different things to us all and probably change with each generation. In elementary school being able to ride your bike to school was "the" thing to do. Not only did you have to convince your parents
that you could physically ride the mile or two to school safely, there were other rules at school such as walking your bike on school property. As we get older obtaining a drivers license, being able to legally consume adult beverages and getting a "real job" are the next levels in our quest to become adults. The older we get the more silly some of these earlier goals become. I still think convincing my parents I was responsible enough to ride my bike to school scores highest in terms of effort for me to achieve a desired goal and I still treasure this experience.
So what are the rights of passage for boys and young men who have DMD? My sons never rode their bikes well enough to go more than a few hundred yards (Matthew didn't have strength to pedal a trike.), so riding to school was out. Driving doesn't appear to be feasible and I'd rather they not take up drinking. It really is complicated. Like everything else related to DMD we take each day at face value, celebrate the victories and look for answers for the disappointments.
Patrick recently texted Alice asking if he and Matthew could "walk" home from school and she e-mailed me asking what I thought. Every day the bus comes to the house picking them up in the morning and dropping them off after school. Apparently they both decided it was time for a change. We live two miles from their school and there are sidewalks along the route except for the last quarter mile to our street, but the side of the road is paved and the shoulder is eight feet wide. My immediate response was yes, of course, but while replying I asked Alice to ride her bike to keep an eye on them. I got two calls at work from people who saw the boys and wondered if they missed the bus and were safe (I'm glad people watch out for my sons and appreciated their concern.). Once I explained Matthew and Patrick just wanted a change the callers immediately expressed relief and said it was great the boys had decided to go out on their own.
This incident got me thinking about the things I was able to do as a boy and at ages 16 and 18, Patrick and Matthew's ages, and how I'm more cautious and concerned for their safety. I regularly walked a mile to a local store by the time I was ten to spend my allowance. At fifteen I was working at a local supermarket, bought my first car and had my license by the time I was sixteen and had my first legal beer at eighteen (The laws hadn't changed to 21 yet.). Why did I hesitate letting Matthew and Patrick skip the bus and take their time coming home? For my sons and many others who have DMD the isolation they experience because of their disability hampers social maturity and I worry this will alter their judgment. They don't have what we would call "street smarts". That wasn't the reason for my apprehension/protectiveness. Matthew has become significantly weaker and should his hand slip from his controls he is unable to get it back on the joystick to keep moving. Patrick is able to help provided he is able to reach his brother. More than this, I am concerned with people driving as they cross streets being able to see the boys. They would also be passing by some "tougher" neighborhood (Not that I expect people to give the boys a hard time or influence them to take up smoking.). Some of the young people in this neighborhood are a bit fowl mouthed and I like to limit their exposure to this language. Still, I relinquished control and let them come home with a bit of independence (As much as you can have with Mom riding nearby on her bike.).
As it turned out Alice was needed because Patrick didn't take in to consideration his chair wasn't fully charged and needed a bit of a help on the last hill coming to our street. This doesn't validate my asking Alice to accompany the boys home as much as it assuaged my concerns.
I constantly think of how to foster ways for my sons to experience more from life and unfortunately I'm still at a loss. Matthew has had several girlfriends while in middle school, but in high schools he just has girls who are friends. Patrick is still uninterested, yet I'm sure one day he'll become infatuated with a young lady or two. Alice and I have driven the boys to movies and once or twice to the mall to meet friends, but going on dates isn’t the same for my sons because Alice or I need to drive them around. Nothing spontaneous happens when the specter of mom or dad coming by in an hour hangs over like a dark cloud. I still hope my sons will meet someone nice and I am not opposed to providing more opportunities and leeway for them to learn more about themselves and their world.
The other impediment is societal bias towards the able bodied. So much freedom is taken for granted when you are able to walk and climb stairs. Most private homes have at least a few steps to enter which is enough to prevent someone who uses a wheelchair from getting inside. Our sons are unable to visit most friends as their homes are inaccessible. The few times they’ve been invited to parties it was summer and they had to remain outside, so if there were indoor activities they were excluded from participating.
When Alice and I bought a new car I transferred the boys and took them for rides. Matthew and I found a great place where he can see the beach and we sit and just think. We also have a favorite pub we visit where Patrick can be lifted onto a stool and Matthew pulls up to the bar in his power chair for dinner. The staff treats them like kings and it has become a bit of tradition to go for a change of pace. These are small steps and are won't replace real independent activities, but until other opportunities occur we’ll all to settle for what we are able to do.
That seems to be so much the way it is for those in this DMD world. We need to celebrate our small victories and find our silver linings. With more perseverance and a little ingenuity we can come up with other opportunities for our sons to experience similar “rites of passage” that we had and maybe come up with some which are more meaningful to our sons.