A birthday wish for James – Opinion – The Boston Globe

A birthday wish for James – Opinion – The Boston Globe.

This opinion piece in the Boston globe articulates our problem in Massachusetts dealing with funding issues for adults with intellectual disabilities. The young son is turning 21 years old and the friend  quotes the mother: “He has opened our hearts and minds to endless possibilities, but the future is scary. We want so much for him to have a full life with friends, a life that brings him joy and an ability to be a contributor to our community through real work and volunteering. Our vision for James’s future is not so different from other parents, just a lot harder to put together.’’

“To live a life in full, he needs a full commitment from the rest of us. Money is part of it. That’s reality.

My birthday wish for him is a happy and productive life and a world willing to pay more than lip service to help him live it.”

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4 thoughts on “A birthday wish for James – Opinion – The Boston Globe

  1. Ive been lucky enough to have met James and consider his mom a mentor. While I’m not looking forward to transitioning (we have some time), I’m grateful for more experienced parents who are working to make things better for those of us coming up behind.

    I didn’t realize you are in MA (so are we)! Thanks for sharing this

    • Yes, we are Massachusetts and feel grateful for that in many ways. The Greater Boston area has more opportunities than most for our children and for adults as well.The parent community is strong, too.
      I am working with another parent/physician to educate doctors and hospitals about the needs of adults with intellectual and developmental disabilities. We are also developing a new residential plan for our kids and collaborating on a new adult day program. This exercise I’m doing here in the blog is helping me to solidify my thoughts about what I really want for the new project.
      Thanks for reading and commenting. We need to support each other in these uncharted waters!

  2. Money is indeed a part of all of this. I think we – the collective “we” that makes decisions on how shared resources are spent – pull back on providing funding beyond a certain level of care for people we think will never be productive economic units. No one really says that quite so bluntly, but if true it explains a lot. It would take money to even create the conditions under which we could fully explore what a Lily or a James might be able to learn. I see no evidence of legislators on a state or national level fighting for that.

    Which leaves those who love Lily and James and others like them very much alone …

    • What occurs to me now is that we Americans, for all our “It Takes a Village” talk on the outside, really vote with a “take care of it yourself, pull yourself up by the bootstraps” attitude. We need family and community and when someone does not have that home support, we need to be able to back them up as a larger community. (IMO)

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