Mid-Ability Caretaking
The Not-Quite Done, Always Available, Oversight Parent
As my son edges closer to the finish of his public school experience, I am getting a better picture of our lives after graduation. I spent twenty years dealing with the issues right in front of me — advocacy for better reading programs and organizing social activities — and I find myself struggling to understand my future life.
Parenting a special needs kid was a lot of work, sure, but he was gone most of the day. I could balance those responsibilities with a writing job. I wasn’t steering his ship, and I could lodge complaints when things were going well.
After several months of research, I’ve come to accept that there are few programs or organizations that fully support people with mid-level abilities. In June, I’ll be the Captain of the Ian Cruise.
What are mid-level abilities? Some are young adults, like Ian, who are smart, but poorly educated and poor social skills. Others might have mild intellectual disabilities but have good social skills. And still others have physical or mental health issues. Many in this group might appear to be totally “normal,” but their issues are significant enough to make them reliant on their parents well into adulthood.
Now that I’ve completed the paperwork gauntlet to get Ian into the state bureaucracy, I must flesh out what he’ll be doing in June.
A couple of weeks ago, I attended a “Transition Fair,” which resembles a typical high school college fair. Providers sit behind tables in a school gym and hand out flyers, business cards, and branded key chains. Steve and I walked down the rows looking for programs and organizations that were appropriate for Ian. Yes, no, no, no, yes.
We picked up some flyers for some special programs at two community colleges, one group that organizes social events for autistic adults, and two groups that works with the state to provides job coaches and work opportunities. Then I followed up. I went on one college tour and make phone calls.
I have a plan in place. Three classes at the local community college and two days of work stocking shelves at Best Buy. But there are no guarantees. Ian could easily annoy someone by accidentally calling a boss a “dummy” or loudly complaining about a classmate in one of his classes. The Real World isn’t very kind to oddballs. I’m hoping that by working with the intermediaries that I met at the Transition Fair, we can keep surprises to a minimum.
I am slowly accepting that I will have to oversee this schedule, make phone calls when necessary, drive him around, and maintain all the paperwork. I will have to stitch together various part-time opportunities into a full day of activities. I will have to oversee this operation. While my friends are shedding parenting responsibilities, I am gaining new ones.
It’s not easy to write or do any form of employment, when distracted with driving responsibilities or managing someone else’s calendar. I need a huge chunk of uninterrupted time to really get some proper work done. I also can’t work, when I’m feeling guilty, because Ian has spent an entire day in his bedroom in front of his computer.
And, right now, all I want to do is work. I have some great opportunities in front of me. Getting dressed up, earning money, and doing smart things is way better than sitting around at a YMCA waiting for Ian’s exercise class to finish. I am not sure how I can balance everything. I’ve been a bit grumpy that I don’t have the same life opportunities as my friends.
I talked with a woman of a severely autistic eight-year old last month. Their family hasn’t taken a vacation in eight years. She didn’t think he could sit on an airplane to go to Disney and feared that he would drown himself at a beach house. In comparison, my issues are small. Perspective, Laura!
So, we have an imperfect plan in place with a lot of hazards and question marks. I’m hopeful that Ian will be successful in June with the local college/work plan. If everything goes as planned, it might not be a Great Leap, but a Small Leaps are good, too.
LINKS
From the archives:
Just wanted to thank you for what you do. I'm in an eerily similar space right now with my high school senior who is also mid-level. Friends wonder why I haven't gone back to work. It's because figuring out my daughter's next step (and dealing with all the bureaucracy and paperwork and investigating every organization and funding source) is my full-time job. Thanks for helping me to not feel so alone! I appreciate you.
Yep this is where I am. I do a lot of driving & scheduling & searching & feeling guilty when he has nothing to do but I need/want to work. I am grateful for the programs he does have, and still ... it’s a challenge.