There is one thing that is true of almost every special-needs parent I have encountered: we all have a tremendous amount of guilt. We feel guilty for skipping therapy, for getting frustrated, and for basically doing anything that isn’t spending time to help our special child overcome whatever hurdles they were dealt in life.
I talk about this struggle a lot. I talk about feeling guilty for having more kids after Daniel (my 5-year-old with Down syndrome), because that takes time away from things I can be doing to help him reach milestones faster. I talk about feeling guilty for not saying something when I hear someone speak derogatorily of someone with a special need or says the word “retarded.” And, I feel guilty when I have conferences with teachers and doctors just so we can go over all the things that Daniel can’t do.
For the last five years, my life has been consumed with trying to help my kids live up to their potential, especially Daniel.
A recent NPR episode offered up an eye-opening solution: stop trying to “fix” people with special needs.
The feature that appeared on the station’s Invisibilia segment investigates the inner workings of a small town in Belgium. The small town of Geel has a profound way of helping individuals with intellectual disabilities — radical acceptance.
People in this small town actually home individuals, making them a part of their family. The town has been doing this for over 700 years and has been termed “paradise for the mentally insane.”
In one touching case a woman hosts a male who the townspeople lovingly call “the button man.” Every day the man twists the button off his shirt, and every night the host woman sews them back on for him.
When the NPR reporter asks why the woman doesn’t do something to fix the problem, like sew the buttons on with twine, or get him shirts without buttons, the lady is appalled by the suggestion. She responded, “This man needs to twist off his buttons. Let [him] twist off his buttons!”
In her eyes, his idiosyncrasy was not a “problem” that needed “fixing.”
I am sure these people would be appalled if they knew of the lengths we Americans went through to “fix” our individuals with mental and physical handicaps.
This story is wonderful, yet, despite its message, I have to wonder how difficult it would be to implement.
When being an advocate for an individual with special needs you are constantly walking a thin line. There is that very delicate balance between doing things to improve the quality of that person’s life and just accepting them as they are. Also, at what point does “not trying to fix an individual” turn into gross neglect of their potential by not utilizing all the resources available to that person?
I just don’t know.
But in Belgium’s message to America — to stop trying to “fix” people with intellectual disabilities — I think we can all learn something.
