Childhood to Adulthood--The Saga Continues

Chronicling the life of our autistic son Joel from his childhood to adulthood, he turns 21 in December 2010, brings to mind the constant concern, constant joy, and emotional roller-coaster that a special needs child causes in a family. In the course of living our lives, we often encounter dramatic events that require our emotional reaction. Events such as loss, or birthdays, or tender moments, or thrilling times, or adventures, or an infinite amount of audacious and stunning things that happen to human beings. All these and more elicit great emotional responses from us. But once they are done, while vestiges of the experience remain, in general the emotion reposes, returning to a calm ride on the sea.

Yet having a special needs child causes an entirely different set of emotions in a parent. Good parents love, protect, and worry about their children all their lives. It is almost a mandated condition of parenting (and grandparenting I hear), to spend a great deal of time being concerned about your children. For us the same is true. We love our children and each one is special, deserving our devoted love and attention forever. The difference is that the dramatic events that elicit great emotional responses, turn away and go into repose. Parenting a child without disabilities provides the human emotions opportunities to relax, to calm themselves, and to experience still waters after the turbulence.

Parenting a disabled child, however, can be likened to being on rough waters that will not change, will not become still, and will always threaten to overwhelm the boat. Furthermore, the boat remains on the water and will never land. Turbulence becomes a way of life on the open water and any calm is relished but somehow anomalous in a quaking quagmire of constant contention. But wait, if all that is true and more, where is the pleasure, the joy, the blessings?

I recall as a teenager, hiking through the Franklin Mountains searching for and finding Prickly Pear Cactus. Carefully, but thoroughly, we would gather the little pears, cutting out the tiny needles and collect them for jelly. It was pain-staking work due to the fear of needles getting stuck in fingers or even in tongues, but the joy of the taste of the jelly was worth the effort. So it goes with raising a disabled child.

Unlike dramatic events that dispel, leaving behind vestiges of concern, but ending in positive, raising a disabled child has no end. It requires an infinite amount of tenacity and patience. It is ubiquitous and difficult. Not for the faint of heart, a parent must apply due diligence to virtually everything from hygiene to health to safety education to behavior. Somewhere in the transference of child to adult, the parent must find ways to make the child socially presentable, contribute something to society, and fit into the world.

I do believe that a parent of such a child must take some time for self-examination, for to learn oneself is to be able to "learn" about others. A moment of selfishness or self reflection can make one aware of a lifetime of selflessness. And selflessness is absolutely necessary for raising a disabled child to adulthood.

But like the prickly pear, the rewards are wonderful and like the song says, "Love Changes Everything." To love your child is to do everything possible to help him or her regardless of the challenges in front. In some cases, love can take the form of institutional help or medical intervention but in most cases, love is the ruling factor in all decisions for nobody knows your child the way you do.