According to Bill Dogherty, a family with a child with special needs has two tasks (he would be rich if he were paid a dollar for all the times I have quoted his great advice):
Make a place for the disability,
yet put the disability in its place.
As the mother of a 26-year-old with Down syndrome, I can show you quite a few times I chose not to follow Mr. Dogherty’s wise counsel. Instead, I chose to follow only the first part of his advice and, of course, to an extreme.
I would hear of a new regimen, new therapy strategy or the litany of goals that Karl had yet to reach. In prime fashion, I would go into this crazy “overdrive” into which parents like me fall easily. God forbid anyone get in my way. I was on a mission. In no time, I would make Karl’s disability the centerpiece of family decisions and time commitments. It is so easy to get to this point. I’d spend hours dreaming of what to do to get this “new thing” in place for Karl. After all, all his life’s outcomes - his happiness, his skills, his acceptance in this world - depended on this “thing”. (I am being facetious here. I know some of you are hearing me loud and clear, right?)
This ended at the least in dissatisfaction and at the worst in misery. One time, I committed to seven therapy sessions a week. (Yes, that did happen, I’m ashamed to say.). And I was dragging my other two preschoolers to every session as well. I became, of my own admission, difficult to live with. Moreover, I became physically exhausted. There was no way that I could follow through on the “homework” from those seven sessions and do normal life.
One morning, WC, confused, blurted out: What is going on with you? I remember being embarrassed to admit what I had done. I was miserable. Thankfully, as happened quite a few times, we stopped and reconfigured priorities with our whole family - chiefly us, as a couple - as central. Then the dissatisfaction or misery subsided.
WC and I realized what I had inadvertently done: ignored the second half of Dogherty’s advice. I had not put the disability in its place. Let’s admit: disability can be very disruptive - very - unless we follow Dogherty’s advice: Make a place for the disability, yet put the disability in its place.
So how do we start heeding this advice? We need to back up a few feet and examine our own selves. I humbly submit the following steps that WC and I have found helpful.
Before we can help our children, each of us need:
- To have healthy communication with our child’s other parent. If I had only come to WC before scheduling the 7 therapies, WC would have been able to show me some wisdom in keeping to just a normal 3 therapies a week: children work better with days to rest between, too much daily disruption to routine can damage outcomes of even the best therapy, etc. . . .
- To build a network of support for our child and ourselves. We need to be pulling others around us to help: perhaps taking my child to therapy, perhaps caring for my other children while we are at therapy or perhaps bringing us dinner on the day we have therapy. . .
- To know our child is a welcome member of our family, NOT the CENTER of our family.
- Not to compare our family with other families. Every child is different. Every family is different.
And most importantly, remember: Make a place for the disability, yet put the disability in its place.