17 years ago I found myself facing what I thought at the time was the biggest challenge of my life; my wife had just delivered our twin sons and her doctor announced to us that both of our sons were born with Down syndrome (DS). For reference sake, Google is 14 years old in 2012; so 17 years ago we had to rely on the support of other parents that had paved a path for new parents like us in our adventure with DS. We found the interaction with other parents to be far more comforting than searching for information on the internet from sources that may or may not be well known.
As a father, one of the first words of wisdom and relief ever spoken to me were “congratulations on the birth of sons, they have been born with the Cadillac of disabilities.” These words came from a fellow father, his daughter born with DS some 3 or 4 years before my sons. In retrospect, his comment was accurate minus the fact that many years later we would find that our sons also have Autism.
Forgive me for the use of ‘my and our sons’, they are always our sons, some of the thoughts I have are solely a reflection of the way I think and feel, so I appreciate your understanding and following along.
From birth through age 14, our biggest concerns were transitioning from phase to phase or elementary to middle to high school. It was equally important that our sons experience as much as they possibly could while in school and we found ourselves very fortunate that our sons educators made every opportunity possible to include Kyle and Hunter. Over the years the boys have made many friends and are known both in school and in our community, which was another goal.
Along about age 14 a friend asked a question that we continue to seek an answer to, “what does the future hold for Kyle and Hunter”?
In less than a year the boys will be 18, this will cause several ‘transitions’ at once; guardianship, social security disability income and the rest of their lives to name a few. As ‘normal’ adults we work and prepare for retirement, as parents of children that age into adulthood, retirement becomes a non-factor for some of us. Reports show that many adults with disabilities do nothing all day; what does this say about our ‘community’ more importantly what does this say about us as parents. Don’t get me wrong, as parents we do all we can for our kids, I am only asking because I constantly wonder “can we do more”? I believe we can, and should; after all, the parents that we relied on as support when our children were born made a path, now it’s our turn to continue paving the path or the path stops.
I have witnessed parents at meetings held by community center boards asking state representatives ‘how is the state going to take care of my kid when he/she reaches adulthood?’ Sad but true; I however do not want the state caring for neither my sons, nor your children either . . . as a community, I believe we have within us the ability to do more . . . our children depend on us.
“The principal goal of education in the schools should be creating men and women who are capable of doing new things, not simply repeating what other generations have done.” Jean Piaget