From schools to workplaces, recreation to the great outdoors we have all heard the word "accessiblity." It is my experience that unless you have rolled a day in a wheelchair, you really have no idea just how unaccessible the world still is.
I decided to blog about the experience my family encounters to bring more awareness to the trials and tribulations, and of course bouquets, that occur for both the caregiver and the amazing little guy who endures all this.
I am speaking of my son who has a muscle wasting disorder called Duchenne Muscular Dystrophy. This disorder is devastating enough without the trials he has endured in his 12 years thus far.
I am my sons greatest advocate but if you think making arrangements and getting all the little details in order is an easy task, think again. He is now in Grade 7 and since kindergarten ( when we first heard of his diagnosis) we have had to FIGHT for accessibility just to help use everyday necessities such as power buttons for doors, ramps, accessible playgrounds, accessible pick up spots and of course access to stores and restaurants.
Here's the trick. My son did not need a wheelchair until this year. Don't get me wrong, he still had an extreme amount of accessibility issues due to weakness. We gained a lot of muscle trying to carry him up stairs. I had many sleepless nights and worried days wondering if someone would notice if he couldn't get a door open and he was stuck outside after recess due to a rediculous rule that he could not use the one door that had the access button because it was not on the side where the students came in.
I've had to fight for real access to the playground instead of the severe slope they tried to have him climb. Because my son looked completely normal in mobility when walking(not running, jumping or climbing) it was easy for people to forget his struggles and he would be encouraged to push himself. With DMD tearing and pulling muscles is a bad idea and strength training can cause more harm than good, a fact many people have a VERY hard time understanding.
I remember as a child myself hearing about accessibility and people trying to fight for their rights to be accommodated. That was well over 25 years ago. How far have we really come. It is true many people do their best to make the world accessible but we have a LONG way to go.
Now we are moving forward and I hope to blog the trials and tribulations we face daily to help others understand the small and large things that affect people with challenges ongoing. The astronomical blunders, the discourteous attitudes and the general anxiety it causes those of us who experience these challenges everyday. With any luck I will have lots of good things,helpful people and overall happy events as well.