I started to read this father's story today and was struck by the title of the second chapter: Raising a Question Mark. Yes, most days as a parent of a child with a disability, it does feel like I'm raising a question mark.
When he was born the questions were like these:
Will he live?
Will he be able to nurse?
Will all of his "broken" parts be fixed through surgeries?
How will his disability affect our family life?
Does this mean we are different now?
How will living with a brother with a disability affect his sister?
Can we handle this financially? What about emotionally and physically?
As he got a little older, the questions were like these:
When is he ever going to walk?
When is he ever going to talk and will we ever be able to understand him?
Will we actually be able to have a real live conversation ?
Will he learn to read? Will he learn to enjoy books?
Will he be invited to birthday parties?
Will he be able to ride a bike?
What about drive a car?
Should he be educated in an inclusive general ed classroom or in a self-contained special education classroom?
What kind of a job will he be able to do? Will it be meaningful and one that he enjoys?
Now that he is almost seventeen years old, some of the questions have gotten deeper and more complicated:
Is he employable? Will he be employable by the time he is leaving the educational system at 21?
How can we support the development of his emerging self-advocacy?
How can we assure he will lead a self-determined, self-directed life?
Will he be safe in the world when he is living away from us?
What kinds of supports will he need?
How can we make sure his days will be meaningful and not be spent on the couch in front of a television?
Who will be there for him?Who will be there for him?
Questions. Lots of questions.
The truth is, all of us who raise children are raising question marks. When our babies are born, none of us knows for sure what the future holds. Those of us who have kids with disabilities are raising bigger, brighter, more powerful question marks. If we focus too much on the questions, we will miss enjoying the child that we have. Here. Now. As our children grow it is important to spend time thinking about the questions, but keep the big picture in mind: We are raising men and women, not question marks.