All the recent talk about Mama Grizzlies (ala Sarah Palin and others) got me thinking about the most awesome women (and men) I know - the parents of kids with significant "special needs."
I have been involved with this population long enough to remember when the concept of "refrigerator mothers" was commonly accepted, even among the professionals. As with so much of my early teaching years, I feel a profound need to apologize over and over again for all the damage we did with such horribly incorrect ideas. Can any of us imagine how painful it must have been for a young mother struggling to cope with a very challenging child to be told by her doctor that the problem was that she didn't really love her child? Or didn't love him/her enough? And that the only real hope was to send the child away to some institution (usually far from home) and let the "experts" raise them?
Moms - and dads and siblings - today have it considerably better, but their lives are still impacted in ways that most of us can't begin to comprehend. Little or nothing about their daily lives compares to the norm, if there really is such a thing when it comes to family life! School personnel struggle to implement needed accommodations to make a child's time away from home as conducive to learning as possible, but that's peanuts compared to what Mom, Dad and sis/bro Grizzly have been doing for years before school enters the picture. Virtually everything they do at home is an accommodation of one sort or another - sleep schedules (and disruptions, or total absence of sleep!), dietary restrictions or preferences, furniture arrangement, trampolines on the floor or swings suspended from the ceiling, disrupted or non-existent travel or holiday plans . . . it goes on and on. Parents of young kids with autism are told of the critical importance of early intervention and often pay huge sums of money for such services. But it's more than that - looking for therapists, training them, and then opening your home and family to an almost constant stream of outsiders who come to work with the child. It's one of the few things that people in the autism community agree upon - early intervention helps, but at what expense? And what if a particular family just can't manage it?
I recently listened to a panel of moms of kids with autism share some of their more painful memories of the difficulties they have faced in the home, school, community, or place of worship. Some have learned of school practices bordering on abuse, some have moved - often more than once - to find better services for their child. Married couples have lived apart for years so that one could work and the other could live in a school district that might better meet the needs of their child. And of course, many couples could not survive the pressure and stress and found divorce to be the only option. Then there are the effects on siblings. Often overlooked in the chaos that ensues when family life revolves around one particularly needy member, they might withdraw, or act out, or take on more than they can handle in the way of responsibility - all of which adds to the stress and guilt experienced by the parents.
It doesn't end when a child graduates from high school. In fact, that's probably what's been on the parents' minds from Day One - on those rare occasions when they find time to think! What happens then? And what happens when/if we are no longer here to help?
I worked in the schools, mostly at the elementary level, and I observed first-hand some significant progress in how we developed programs to meet the special needs of even the most challenging students. Now I find myself spending time with families who have adult children in need of services, and I know there is a rapidly growing number of these individuals who will soon be leaving the school setting. We are woefully unprepared to meet their needs. We owe them - and their awesome families - a whole lot more!