When the IEP team was discussing the vision statement for the next 5 years we had comments to insert but we largely let the rest of the team write that section because Duhdee and I are not 5 year planners. Duhdee and I are big picture visionaries.
Not long after Monkey’s diagnosis there was a message that came across the Fragile X listserve from a parent of a much older man with Fragile X. She was thinking about leaving the listserve because her son was no longer in school and many of the concerns that the other parents were facing simply didn’t apply. She wasn’t sure she had much left to offer. Her (potentially) parting message focused on keeping the big picture in mind. As she looked back she wished that she had spent more time thinking about how she wanted her son’s life to look as an adult and not get so caught up on the details involved in day to day school life. Her message really spoke to me and it has greatly affected how we view school and life in general.
We have a general idea of how we want Monkey’s life to be. We want him to know and to feel love. We want him to be as independent as he can be. We want him to feel powerful and valuable. We want him to feel sucessful. We want him to be happy. It’s a pretty standard parent vision really but when you think about what it means to have a disability in this world you start to see how these are really big ideas. I have family members with intellectual disabilities who have not had the chance to experience these things. They’re not miserable, by any stretch of the imagination, but they could be so much more and so much happier if only they’d had the benefit of all that we now know.
So, when the time comes each year to write the 5 year vision statement we insist that they include two statments that speak to our long term vision but we leave the small stuff to everyone else. We feel that while there is much for him to learn (and we are committed to helping him learn it) the core values, strength and happiness are going to come from us. We can’t ever want to lose sight of that.