"I expect my son to go to college, get married and live in his own house."
"The future is unlimited for my daughter."
"No one is going to put limits on my child."
When I first received the news that my daughter has DS, I read a lot of online forums. I still do actually. And I find my reaction to statements like these hasn't really changed much in the last two and a half years. I read these sentences and think these people must live in rainbow and unicorn land because they are not in touch with reality.
Don't get me wrong. I think it is important to have expectations for your children. I clearly have confidence in Phoenix's ability to learn and grow or I wouldn't spend so much time and energy on early learning activities. I see her spark and joie de vivre and feel hopeful for her future. But I wonder if there is a basic misunderstanding that having high expectations automatically translates into these expectations coming to fruition.
My parents expected all of their children to go to university. As long as I can remember, post secondary education was always the implied end to our educational career. My sister and I did in fact graduate from university and we both have found success in our particular fields. My brother dropped out of high school, dropped out of college and ended up as a morally bankrupt individual. How can this be, you ask? Your parents had such high expectations!
We are all limited in some way. Some of us more than others. My daughter will have more challenges and limits than many other children. It will take longer for her to learn and process information. It will take longer for her body to learn how to move. It will take longer for her mouth to learn to make different sounds.
She will be limited.
I can't understand how it hurts the DS community to admit that our children will be limited. It's the reality of having extra genetic material. It causes complications, and challenges and limits. Our children are different. And that's ok.
My brother is a limited person. It's not because my parents put limits on him. It's not because society put limits on him. It's because having high expectations of someone does not automatically cause them to be successful. There is not necessarily causation here.
There are all kinds of other factors that influence people's long term outcomes. Personality, family support, learning styles, socio-economic status, parental education levels, parenting styles, school community, access to resources, peer relationships, and the presence of disabilities all impact the outcomes of children and youth. In fact, the interplay of factors that do influence outcomes is very, very complex. It is simplistic to assert that having high expectations of our children translates to outcomes such as attending university or college. Having high expectations won't cause this to happen. Having a strong academic aptitude as well as a myriad of other factors might allow it.
Given that 99% of people with DS have intellectual disabilities, it is extremely unlikely that Phoenix will go to university. It's not impossible, it's just not likely.
And you know what? That's ok.
I took a graduate course in Spec Ed while I was pregnant with Phoenix. The professor asked the class "Why aren't more high school graduates applying to go to university?" I responded "You are making an assumption that going to university is the pinnacle of what it means to be successful." I think the question should be "How do we let young people know that there are many routes to success and that going to university is just one of them?"
Phoenix is limited. She has a disability that will likely make many aspects of her life challenging. It's ok to admit that.
I can hold this view and still see a bright future for her.