Only just about everything.
Ethan’s transition into ‘adult life’ has been nothing like I anticipated. It is has been so much harder, slower and fraught with roadblocks than I could have foreseen. Thank God. I am glad I didn’t know – similar to how I am glad I did not know that he would be born with an extra chromosome.
I have noticed that my frustration and disappointment is not well-met by people asking how Ethan is doing. They want to know that he is busy & happy. They want to hear that there are lots of ‘programs’ for adults with disabilities. They want to hear ‘He’s good, thanks!’ I have not complied with their desires. I’ve bitched, moaned, and complained. I have been honest. People haven’t enjoyed that. I can tell by the looks of disgust on their faces. Most people tell me that I must be ‘missing something’. Unlike them, I am not comforted by this thought, because I know that I am not.
The reason I know that I am not ‘missing something’ is because I picked a highly competent Support Coordinator. This is crucial. A support coordinator is the key to unlocking the state-given budget assigned to your (adult) child when they entered the system. Later this week I will attempt to explain this system. You might not believe it.
I have been visiting programs, making phone calls, attending seminars and talking to other parents for a year about this system. Right before Ethan graduated – ‘the system’ changed. The programs that were available to people who graduated 5 years ago, or 3 years ago, or 1 year ago are not available to Ethan. It was a shock to find out that our beloved Midland School, whose other half is Midland Adult Services had been rendered “not an option” by the Department of Labor – but let’s not go there right now. We were recently informed that there is some type of work-around for that situation. It is not exactly the same services that we expected to be available to him shortly after graduation. We are now 100+ days post-graduation 🙁
We visited 10 different ‘Day Habilitiation Programs’ before Ethan graduated. These are programs that individuals can go to and participate in a myriad of activities – recreation and otherwise. Ethan has been attending one of these programs for two weeks, three days a week. He has been bowling, shopping, swimming, using the fitness room, doing crafts, & cooking. It’s good. My concern is that we will never get access to employment opportunities and transportation is a total bitch. It is either all me and Dennis sharing the driving, dreadfully expensive transportation options or terribly inconvenient ones. There is a way to use his state given budget for the expensive type of transportation – if they have room and a route – but at this point I am appalled at spending $50 or more on short routes to where he is going. Our current option requires a lengthy and complicated reservation system, paying in cash, fluctuating fares, a huge window for pick up times and long waiting list to be put on a regular schedule. Ugh.
I will devote a post to transportation soon. You probably won’t like that post.
The system is lacking in vibrant programs and viable routes to employment. It is woefully inept and poorly organized. People who truly care for these new graduates are having to fight the system, rather than relying on it for true support.
Don’t tell me to cheer up or that there must be more out there or whatever trite statement deflects the fact that this is a very difficult time. I am trying to accept that what I thought this would look like is not what it looks like.
I am terribly discouraged and right now I am just going to sit in The Suck of it all. You are free to go read a more positive blog.