I had a realization a few days ago, and I wanted to share. Maybe as parents and caregivers of children with special needs you have all come to this realization already and I’m late to the party, but if not here we go…..Sarah is now 27 years old. Our goal is to have her be as independent as possible, so that she can have a productive and happy life where she is safe.
She has made amazing progress from that newly-diagnosed 2.5 year old, flitting here and there, not communicating, having tantrums to get her needs met to an adult who can get herself ready for her day, who can do a few household chores, who can shop at the grocery store and farmer’s market independently but with someone nearby, and who tells jokes with such an infectious laugh that the joke doesn’t even have to be funny to have her listeners giggling along with her….however, the joke is normally “hilarious” (as Sarah would say).
But this is what I realized; I am happy to have things be the way they are; we’re in a routine, I make her breakfast and dinner (she’ll make her lunch – huge win here!). I’ll do her laundry but she’ll put it away, but this is not ok, it’s not enough. I need to start looking at what Sarah needs in order to have a happy productive life when I’m not here and when Steve is not here. I need to help her work on goals for a future…and a future without her parents. I am planning on living until I’m 100, but unfortunately as much as I can wish for this, it doesn’t mean it will be so. Sarah has an amazing younger brother, Jacob, and I know he’ll be there for her, but I don’t want him to have to “parent” her. I want him to be a brother to her and have his own life as well. So here I sit with this new realization,
I now find myself looking at the Essential for Living skills differently, it’s not only a question of what Sarah needs today, but what she will need in the future, and in a future without her parents.
As I write this, I don’t want to be a pessimist. Let’s enjoy the moment, let’s celebrate our “wins”, but let’s prepare for the future. Let’s look through a critical lens at what skills we are working on with our children: will they benefit our child and also our “future child”? The answer to these questions will be different for different families and situations, but whatever the word “independent” may mean for your child, and this may mean doing things with assistance, let’s have those discussions and work towards that!