Wow. Thinking about topics like these seems pretty overwhelming and after working and thinking and studying on things like this for nearly 50 years, I know just how hard all of this is. But still, all parents of kids with special health care needs or a disability simply are confronted with these issues right from the beginning.
So maybe a place to start is with a comment from a new colleague, Bo Bigelow. He said in our very first conversation that he wanted his daughter, Tess, to be the best Tess she could be. There is the starting point! Now all we have to do is figure out just what will work to help Tess, or any child, become the best they can be.
Mostly, when our children are recognized as having some condition that moves them out of “typical” development, the first things that are suggested are some form of services or therapies to ameliorate the problems that are recognized. There is nothing wrong with that and certainly improving the ability to move, to learn or communicate can help. In the terrible past children recognized as having some serious issues were too often left alone and their problems became more and more massive.
The continuing problem, however, is that services and therapies can too often come to dominate our thinking about our children. The children “become” their health problem or their disability and the time and energy devoted to services and therapies comes to dominate their lives and ours as well. The work on all these things becomes the limiting factor on working on “the best.”
I’m often troubled in meeting families and talking with folks who deliver services that the word “transition” has come to mean some process that gets written into an Individual Education Plan (IEP) somewhere between 15 and 18 years of age. I think of “transition” as a process that starts when the child is born, continues as the child’s “condition” is identified or recognized and continues throughout a lifetime. That is true for all of us and limiting transition to some mechanical process that is built into moving the child from schooling to adult services is, I am afraid, profoundly limiting.
So how can we think and work and live more deeply in ways that do indeed help our children become “the best?” I believe it starts by recognizing that several other things are and will be as important to our children as good services or good therapies. Those other things are community, friendships and growing connection to the adult world.
I tend to think about this as building a populated series of concentric circles. If we draw a circle with our child at the center, the next circle needs to be populated with the people who truly love our child. It starts, of course, with the immediate family, Mom, Dad, sisters or brothers, and can be expanded to include grandparents, aunts, uncles, cousins and others who really connect with an open heart to our children. We have to learn how to see and help others to see the “seeds” of the best are already present in this remarkable little being. Even when services are weak or absent, even when therapies are incomplete and unsuccessful, the child needs to be held secure by a robust “family” who loves them.
That may seem obvious and of course there are many families that surround the child with that love. But there are some who become so preoccupied with “improving” the child that they miss the joy of seeing the child as he or she is at the moment. And more importantly, as family ages and members of that inner circle pass on or move away, the circle can contract to the point where it collapses altogether. So a task we all face is to build friendships with and for the child. If we work well at it, some of those friends will come to love the child just as much as those initial family members. So the next circle become the friendship circle and needs to be filled with a host of friends. It isn’t easy to help build that circle, but it is certainly important. And we cannot think that casual acquaintances are friends.
The next circle out represents a part of the community that regularly supports and interacts with the child. Too often that circle is limited to service providers and while they are and can be important, there is a need to greatly expand that circle to include neighbors, members of associations that the family is a part of, and in general all the “regular places that we interact with folks on a daily, weekly or monthly basis. The folks who populate that circle need to see their interaction with our child as important to the child’s growth and well being and we must help them to see just how important they are. In fact, we need to consciously populate that circle by bringing friends of brothers and sisters, classmates and our colleagues into the circle so that they see just how they contribute to helping our child become the best.
The outer circle includes all those who have only marginal contact with us and our child, but who represent, however, folks who have the potential of moving closer toward the child over time.
So enough for the moment. This “essay” only hints at what I think I have discovered in my 50 years as a parent and what I too often realize represents the ways I have not been able to accomplish all that I wish I had. But what I do know from all that I have done, is that we must help build around our children a full set of circles of love and support and that no service, education or therapy however well performed will be the complete answer to helping our child become the best. It will be the strength of those circles and their longevity long after we have gone that will help our children become the best they can be and help them lead a rich and full life.