In an article that appeared in Sunday's AnnArbor.com (3/28/10), Annie Zirkel has hit the nail on the head:
"Raising a child with disabilities is like living in a yard with an invisible fence."
The fence expands and contracts, sometimes fencing in your other children whom you hoped might escape some of the limitations of life with disabilities and sometimes expanding into new possibilities that make life seem a little brighter and less claustrophobic for everyone concerned.
As Annie says, envy of people not confined by the invisible fence occasionally rears its ugly head. Many years ago, I remember going to a party at my daughter's middle school a few weeks before the winter break at the end of February. I was eavesdropping on a conversation between two mothers, one of whom was trying to decide whether her family should go skiing in Colorado or spend the week in a friend's condo in the Bahamas. Oh, please!
My plan was to take every measure necessary to preserve my sanity during the dreaded "vacation". That meant loading the boys into the van for their daily activity, an hour's ride through the countryside with music playing. This we called "airing out the boys" and it had become a ritual for maintaining happiness for them and sanity for us parents on weekends. I also hoped for a few hours of respite care from our wonderful and experienced sitter, but that depended on whether the other families who relied on her had gotten to her first. As for my daughter, I hoped she would have lots of invitations to visit friends. It was much easier to do fun things with her when the boys were in school and she was not.
I avoided most, but not all, of the activities for parents at "regular" school, because I could not get over how well put together and rested parents of "regular" children look. The contrast to my harried and sleep deprived friends from the "irregular" school was too painful and distracting. And, yes, I know that other people have awful things to deal with that don't always show on their faces or in their choice of wardrobe, but I still did not fit in.
Nevertheless, Annie has some wise words for people like me:
"I imagine I will always struggle with the challenges of this invisible fence. But I do take care not to spend too much time envying other's grass because it doesn't make mine grow any better. The best I can do is try to make our yard nicer, keep the edges from closing in, and work to appreciate our rare opportunities — no matter how brief or imperfect — for a change of scenery."
Annie Zirkel, LPC is an Ann Arbor parenting consultant and past editor of “A Different Path,” a Washtenaw newsletter for families raising children with special needs. You can find her at www.practicehow.com or contact firstname.lastname@example.org .