I’m pretty sure every evaluation in my son’s file dating back to 2001 notes that “the full assessment tool could not be completed in its entirety.” These standardized assessments are not designed for kids like mine.

In order to get the services he needs, though, they are a necessary evil.

We are lucky to live in a state that provides, through Medicaid, a fairly good range of home and community based services for people with developmental disabilities. This allows my son to access therapies outside of school, which have been a weekly part of his life since he was 3 years old.

But most of his therapies have been on hold for awhile now. I cancelled his home speech and OT sessions over a year and a half ago, due to safety concerns for everyone involved. 

Since that explosive wave of adolescent stress has settled a bit, I decided it’s time to try again. I found a new clinic, thinking that a change in setting might help reset his expectations and interest for these sessions. Finding providers who “get” my kid is not easy, but I’ve got to start somewhere, and this clinic has openings for both speech and OT.

First, he had to get updated assessments done. Read More

A Space of His Own

We’ve known for a while that our autistic son is going to continue to live with us for the near future, and very likely the far future, too. There aren’t many other options (whether it’s a group home or a shared/assisted apartment) that we feel comfortable with for a high-needs, semi-verbal individual such as he is.

But that doesn’t mean he doesn’t need his space. And, it definitely doesn’t mean that we don’t need ours.

So, for the last year or so, we’ve been strategizing and scheming and dreaming about how we can all live together, sanely, moving forward. Read More