- “You know what the difference is with you? I feel like when you look at me and speak, you don’t even notice my wheelchair…you see me as a person and treat me like anyone else…”
- “I don’t feel sorry for myself, so why should you?”
- “Don’t pity me.”
- “Don’t talk to me like I’m deaf or a baby, just because I live in a wheelchair most of my day, doesn’t mean I can’t think/talk like you…”
All words spoken by clients I work with daily. These are conversations we have and things they express to me as desires of their heart.
We all just want to be seen, heard and understood, at the end of the day.
I think because we adopted Blake, I don’t experience the level of guilt many mother’s experience after learning they have given birth to a child with special needs. This guilt may not even be something we realize we express or make decisions from. But we do! In my work, guilt shines through in many ways we as parents and caretakers make decisions with our kids. At the end of the day, pity is our approach. And it hurts to say out loud, and hurts even worse to realize. BECAUSE IN ALL HONESTY OUR KIDS DON’T WANT TO BE PITIED. They are out there living life and we are holding them back by feeling sorry for them.
Let me give you some examples I see pity show up in everyday life in my own child’s world and in the world of the clients I work with.
Grandparents–> You had a doctor’s appointment? We should go get ice cream and McDonald’s…
Teachers–> All A+’s on report card for entire semester, no proof of work.
Social Media–> Here’s a cute video of a boy with Down Syndrome dancing at a game *goes viral*
Parents (of adults with special needs)–> If you stop calling me all afternoon and complaining, I will take you out to eat tonight.
School system–> We haven’t been keeping attendance of your kid with special needs in our class. He comes when he comes and we are glad to have him when he does…
Church Youth Program–> Child is screaming, running all over church out of control, while his/her peers sit and listen. **nobody does anything to make the child follow the same rules**
Parents–> Trusts that school is taking care of the child all day long, doesn’t question education and learning within the classroom.
Caretaker–> Just let him sleep in his chair all day, he shouldn’t have to exercise since he doesn’t want too. (despite his parents paying for his workouts)
Music Lessons–> This is a performance based class/group, he/she won’t be able to do it, it is too hard.
I could go on and on…
Yes.. there are different expectations and different modifications that need to be made for certain developmental delays, etc. BUT these expectations should not differ much from the norm that is expected from others. People with special needs live up to the standards you expect, AND QUITE FRANKLY WE AREN’T EXPECTING ENOUGH, in my opinion.
We owe them more. I am asking you to demand high expectations from my son, as we do at home. If his peers aren’t allowed to do it, neither is he. If his peers are expected to behave, so is he. If his peers are earning grades a certain way and receiving an education through various formats, so should he. If he has a job to do, and the requirements are within his abilities, he should do it and be expected to, with no excuses.
He is amazing, and has huge capabilities I can’t wait to see play out someday, AS DO SO MANY OF HIS FRIENDS AND THE CLIENTS I WORK WITH–
BUT If we continue to sell them short, THE PITY SHOULD BE ON US.