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.
We do the same thing!! Now they ask what we want his adult life to be like. I love that.
Oh, thanks so much for sharing that. I get so scared thinking of the future that I forget it really is reality. I do need to remember that there’s more than just elementary school and that they have so much potential that I want to see come to fruition. Great entry!
Thanks for sharing, I tend to bog down in the trees, its nice to look up and wonder at what the forest may look like.
It really is so easy to get lost in the details, we do it…everyone does. Heck, it’s easy enough to get lost in the daily parenting details of playdates, dinner, baths, etc. We all have the added details that most parents never have to think about. Can he stack six blocks? Can he paint on an inclined surface for more than 5 minutes using a mature grasp?
It’s just nice to step back and remind ourselves of the big picture once in a while, I guess that’s one blessing of doing an IEP!
Hi Umma,
I love this. I’m going to save it and share it with my wife. Its important to focus on the big picture and understand what the big picture is for a child with Fragile X.
“the core values, strength and happiness are going to come from us. We can’t ever want to lose sight of that.” love this… thank you for your blog! Today, and many other days, that was exactly what i needed to remember- we’re running a marathon, not the 100 yard dash.