Recently, as I watched my son drive off on his way back to college, I couldn’t help but marvel at how far we have all come.
When he was first diagnosed with PDD at age three (nobody was then referring to Asperger’s Syndrome), my son was busy skipping, swinging, and stemming while trying to manage the daily work of kindergarten. Loud noises sent him, with covered ears, away from group encounters, while the world of books and cartoons seemed to be his source of comfort and relief.
Over the years of speech/language and occasional therapy and psychologists visits, the need for sensory stimulation disappeared and new concerns arose. We wondered if he would ever be able to cross the street alone or manage his own money? Would driving a car ever be in his future? We worried each day that he headed off to school about the difficulties he would encounter living in his world. Yet he hung there, a real hero, never complaining and always trying his very best despite the many obstacles that were in his way.
Now, 17-plus years later, this fiercely independent young man is a real example of what can happen if parent remain hopeful and flexible in their vision for their child’s future. What happened? How did he get to where he is today? We now believe it was a combination of his hard work, all the interventions, normal development, and the willingness to “think out of the box” in developing working strategies to help him manage his world as it changes. It involved learning about AS, and accepting him for his uniqueness and the richness that he brought to the family.
It was, and is, not always easy. It has required that, as parents, we knew when we needed to take time for ourselves and set time aside for other family members, and when to ask for help when we were overwhelmed. It has involved taking care of ourselves and staying balanced so we would have the energy to care for out family.
Today we are still involved in an on-going process. We and our son have the rest of college, the world of work, and independent living ahead of us. These challenges, too, will require new strategies, lots of conversation, and a healthy respect for the ebb and flow of it all as we try to navigate through.
But now we are confident that while we may not know what the exact outcome will be, we do know we will not limit our visions of what the future holds.
Susan Shamus has a private practice at Special Needs Advocacy and Personal Life coaching. She specializes in helping families with children with AS find a balance between caring for their families and themselves. Her telephone number is: (617-332-3844).