As I am writing this, my son is watching an animated feature film about accepting others unconditionally via monsters!
At six, his questions are incessant. Some of those questions involve my disability: “Mommy, why can’t you walk?” “Will we need an elevator in this house forever?” “Why don’t they build steps that can turn into a ramp?” These are typical questions for Edward right now.
I have cerebral palsy, so I showed him a video of how the brain works and tried to explain my condition in terms he would understand. This has led to even more questions, which can drive me up the wall, if I’m being honest.
That being said, he is the adventure of a lifetime, and my biggest fear. I read about so many stories about inspirational people who have completed so much despite their disability, and I think, They are not inspiring because they live with a disability; they are inspiring because they finished something. Most mornings I’m lucky to finish a cup of coffee before i officially start my day. I say Edward is my biggest fear because on top of all the “normal” parenting worries, there are other important factors to consider:
- Will his teacher understand that I cannot attend every event or meeting due to accessibility concerns?
- Will the school bus company adjust his stop without me having to use the ADA as a threat?
- Will ADA compliance ever mean more than just a ramp to some people to some people/businesses/organizations?
- Will the signal buttons on the crosswalk ever be reachable in my state?
I digressed a bit, but these are all issues which factor into parenting with a disability because, as a parent, you want to meet all the needs your children have. Performing daily tasks should not require a big production, but a lot of times, productions are necessary. A necessary evil, so to speak.
Acceptance is a key phrase in our little family; patience is another. Life is all about give-and-take. I’m hopeful that Edward and I are on our way to mastering this. I am attempting to teach him to do his own research to answer all of the questions he has. We’ll see how far my attempts go. For now, his extremely inquisitive nature is both a blessing and a curse.
“To parent is an awfully big adventure!” J.M.M. Barrie,paraphrased.