By John Bateman
Those of us whose families have a mix of special-needs and able-bodied children often find it challenging to raise kids with such dramatically different abilities. One of many questions that we grapple with is how far do we go to involve our able-bodied children in the disability experience? Should we shield them from it or get them deeply involved?
The natural inclination of many parents, including yours truly, is to do the former. “My healthy kids never asked for such a life,” these parents reason. And, unlike their disabled sibling, the sky’s the limit with respect to their potential. Why burden them with the anxieties and hindrances inherent to raising a disabled child?
The short answer to this question is that to do otherwise would be to ignore reality, which, of course, is never ideal. By shielding our mainstream children from their sibling’s difficulties, we create a segregated two-tiered family. Such an artificial system creates additional stress for the parents, who are constantly scrambling to manage both tiers, and fosters an unrealistic view of the world by the mainstream child.
For some readers this may seem obvious, but for others, we have to learn it the hard way. We think that we’re protecting our able-bodied kids by trying to give them a normal life. In the process, however, we deprive them of a unique opportunity to bond with their family like only those with a special-needs loved one can.
Living with a disabled child is kind of like taking a cross-country road trip without a GPS. You frequently lose your way on back roads, fight with your fellow passengers, stop for directions a billion times and, along the way, experience things that you would never have seen had you been on the interstate moving in the normal flow of traffic. The trip is difficult, no doubt, but it bonds you to your companions like nothing else can. It has taken me over 5 years (and counting) to learn this lesson.
Certainly, the level of sibling involvement should differ based on age and emotional maturity. For instance, you probably don’t want your 4-year old present in the neurologist’s office when she delivers her sobering prognosis for your special-needs newborn. On the other end of the spectrum, you wouldn’t want to force your future NBA All-Star to include his disabled brother in every pick-up basketball game that he plays with his peers.
The general rule for a special-needs family should be: when practical, do things together. From doctor’s appointments and therapy sessions to fun at the beach and the ski slopes, participate as a unit when it makes sense.
It takes teamwork for a special-needs family to make life work. I suggest stressing this point with your able-bodied children, and reminding them that teams work best when each member does his or her part.
Some good news is that your team is not alone. When you have a disabled child, you are a member of an exclusive club. This club includes other special-needs families, friends, teachers and volunteers that are eager to help your team function effectively. It also includes organizations that exist to make virtually all activities accessible to special-needs families. Here is a link to recreational resources in New England:
For those readers living outside New England, try visiting the web site of your state’s disability office or simply search online for local organizations (tip: try using key search words such as your town/state name or zip code and “recreational activities” or “physical activity” and “disabilities”).