Looks Easier Than It is or Was: As I continue to blog about the next chapter in our daughter’s life, I want to make sure folks know that I stumbled along in the darkness for a long time too. That pieces of this crazy quilt are slowly assembling should not obscure that I had no idea what our daughter’s future was going to look like twelve months ago. Twenty four months ago I was just praying for some oasis in the special needs desert to emerge to end my worries.
All Process: It never happened. Well over a year ago, we visited places near our daughter’s boarding school that offered residential and supervisory programming post-aging out. But our daughter is not domiciled in that state and we could not sustain a private pay process for any length of time. Out went that plan. And the reassurance that having her somewhat near her old school might offer. But not a waste of time as it folded into the self-education binder we needed to assemble for the journey. Also we knew she would be better closer to extended family fun and support, certainly over the long run, so why bother to have her live anywhere else?
Education Continues: We put together a group of parents from our daughter’s school with similar goals: children aging out and possibly coming back to their home state. But that didn’t materialize. Yet again, the process paid off as all the information folded into our self-education binder. That chapter included the start of meetings with different service agencies and as well as exploring geographic locales. Arranged by one of the agencies, my daughter and I visited apartment settings with confusing acronyms, CLA and CRS, in locations that made me shudder.
Case Manager: Our DDS case manager was key in the process. She set up meetings for our daughter and me to visit several service agencies in the area. We would squeeze these meetings in during our daughter’s school breaks. During the interviews, our daughter would ask questions about “where do the kids live”? and “who stays with them at night?” and “Do you have places where kids can work with animals?” Kids!
I could see her trying to visualize her future, shifting from the school paradigm to the “independent living” model. And I was doing the same. It was quite frightening, frankly.
Unformed Still: I do not want to overburden the reader with every inch of this more than two-year plus semi-ordeal with its disappointments and frustrations. The point is, nothing emerged fully formed and still has not. Someone asked about staffing. Yes, we have 24/7 but how that will work with two young ladies going to different places at different times, remains to be seen.
As We Therapists Say, It Is All Process: Talk to anyone; meet with everyone: Collect as many patches for that crazy quilt of a future. Eventually they will arrange themselves in some pattern of a good life for our child and yours.
©Jill Edelman, M.S.W., L.C.S.W.