Lately I've been thinking a lot about how my vision of Janey's future affects her, and affects how we spend our time with her. I've been doing a little soul-searching. Am I selling Janey short by how I envision her future?
After a lot of thought, I actually for once cut myself a break and decided---no, I'm not. To show my reasoning, a little analogy. Say I bought a Power Ball ticket (which I don't, but I could of!) It would be fine to dream about how life would be if I won. I could picture the house I'd buy, the charities I'd support, the trips I'd take---I could very much enjoy the thoughts. And it's true that it's POSSIBLE I'd win. It wouldn't be likely, not at all likely, but it's not impossible. There's nothing wrong with that kind of dreaming. However, what if I decided to live life assuming I WOULD win the lottery? What if I put a down payment on a huge house, if I booked passage on a cruise, if I bought myself a bunch of fancy clothes for the charity galas I soon would be attending? Most people would agree that wouldn't be the best course of action.
I dream that Janey will somehow learn to read, that she will finish high school, that she will go to college, that she will have a family, that she will live on her own. I dream those things for her all the time. I am open to those dreams coming true. However, Janey is ten. She can't read, she isn't toilet trained, she can't really have a conversation...in any measure, she is severely intellectually delayed. She also show a lot of very difficult behaviors, enough so that she last year spent time in a psychiatric hospital. Of course, there are not exact odds for life outcomes, because there are too many variables. But if we looked at 100 ten year olds with that general profile, I'd be surprised if even one of the 100 accomplished the things on my dream list for Janey. If Janey were four instead of ten, the odds would be hugely different. Many, many four year olds with profiles like Janey go on to do many of the things on my list. Quite a few six years also do. But as the years go by, the numbers get smaller.
Does this mean I'm giving up on Janey? Not in any way. It means I am using reasonable odds to decide where to put our time and resources. Janey's time, her time RIGHT NOW, is valuable. Another analogy---Picture a couple that wants to have a very comfortable retirement. In fact, they are obsessed with saving for retirement. As their children are growing up, they pass up many, many chances for fun with the kids because it would use money that needs to be saved for retirement. They don't eat out. They don't take vacations. They don't have reliable cars. They don't spend a cent they don't need to. And yes, they have plenty of money when it comes retirement time, but I would say they have missed a huge amount in doing so. They have lived many years not enjoying the right now.
When I have time to spend with Janey, how should I spend it? Janey has been in school for eight years now. She can't name letters. She can't add simple sums. She can't reliably identify shapes or colors. When we have a block of time with her, does it make sense to work on those skills, taking into consideration that the odds are very, very low she's ever hold a job that requires those skills, and that so much time has already been put into trying to teach her those skills? I would say no.
Instead, I choose to invest in the now. Lately, when Janey gets home from school, we spend time together listening to a cool on-line station I have found, one that plays nothing but Casey Kasem countdowns from the 70s and 80s. I love the stories behind the songs Casey tells, and Janey loves much of the music. She dances her amazing dances, she learns the songs at an amazing rate, we have quite a time of it. When she hears a song she hates, she turns off the music and we move on. But while the time lasts, I'd say it's time extremely well spent. Janey is having fun, I am having fun, and she is actually learning things that will help her enjoy her future---more songs, more types of music, the things that have been demonstrated over and over are her strengths and her joy.
My dreams for Janey, my dreams that I think truly can come true? That she have a meaningful life---one with joys and interests and respect from those around her. Success isn't the same for everyone. I think being realistic about what Janey's future might be like is not giving up. It's actually opening up a huge amount of time in the now, and letting us work on a future that respects who she actually is.