May 23 is the end of the school year and the end of the only life CJ has ever known since he was four years old.
May 23. In case you were wondering, it is just over five months away.
This terrifies me. There’s no blueprint. There’s no official plan. There’s no more track of upward and outward. In fact, unless I figure something out, it’s basically the opposite. What happens next? What are our short term goals? What are our long term goals? What are the backup plans? What does CJ’s future look like after he ages out of the school system?
Nothing has ever terrified me more.
He really (really, really) wants to go back to “college” . He attended one of Arc Jacksonville’s Summer Experience four week sessions last summer. He was out and living large, without mom or coming home each day, and with an invisible army of support behind him, he was making it happen. Yeah, that sounds like college.
He might be able to go to both sessions this summer. College x 2. And after that…? After that, it is all me, all the time. Me with CJ at home. Me without the daily break for both of us. Me without the system support to help me help CJ make sense of his changing world. I had one friend describe it as being CJ’s the cruise director on the Good Ship Nowhere to Go. That is NOT what I signed up for. I would be miserable. He would be miserable. What 22 year old wants to hang out with his mom all day every day?
Is there help? Yes. Are there other services? Yes. But there’s no framework of the school system to help me sort it out. It is once again a labyrinth filled with flaming hoops to jump through, over and over.
What about a job, you say? What about putting all these life skills and experiences of CJ’s out there in the community where he can keep growing and contributing? Right. There’s the Vocational Rehabilitation, which is part of the DOE. They work with people with disabilities to help them find jobs and provide support. Sounds great, right? In reality, they are overworked, underpaid state employees doing their best with limited resources. Like so many services since we started this journey, the squeaky wheel gets the oil. Guess who gets to spend the day squeaking now? And the nicer the squeaky wheel, the faster, sometimes. It’s a delicate balance between pleading and demanding, and most day’s I favor the latter.
CJ’s school has a program where he goes to “work” at local businesses for a few hours each day. The school provides transportation and someone to go with him and coach him. He has worked at a YMCA, Goodwill, a grocery store and several restaurants. He has enjoyed almost all of them. He loves to feel useful. Don’t we all?
The problem with all of this is after he is out of school, that program goes away. What will I do? Once that plug is pulled, where do I turn to plug it in again? If he manages to get a paying position, even for a few hours a week, how does it all work? How does he get there and home? Who helps him to make sure he is doing what he is supposed to be doing? Who helps him keep the job? Who lets me know when there’s a problem so I can jump in with support? So many of the people who manage to get jobs lose them when they can’t perform without the supports they so desperately need. And if he gets a job, I am now the taxi, personal assistant and job coach. What will that do to my sanity?
There is a bus service through the local public bus. We had to apply, get a doctor to fill out a form and go for an in person interview. He was eligible. This will provide transportation to and from work. I have heard the bus trips can be quite long as they go door to door to pick up and drop off. CJ has always loved riding the bus. I am hoping it will give us both more healthy time apart.
He wants to move out. A week doesn’t go by without him asking about “college”, the apartments (“the ones over there with the pool”), or the “little houses” at the Arc Jacksonville. Not “if”, but “when” can he go. What on earth do I tell him? What if the answer turns out to be “no?”
I’m trying to make sure he gets to do every senior year moment possible. His name is on the senior class shirt. He went to the Homecoming dance. He walked in senior night with the football team. He already has plans for prom. I know his experiences will always look a little different, but I want to make things as “normal” for him as I can. But I’m always aware that I’m giving him this normal, knowing it’s unsustainable for much longer.
I still wake up in the middle of the night and I can’t breathe. I still wrack my brain trying to think
of one more thing, one more option, anything I haven’t done, anyone else I can contact.
I love my son, but he is almost 22 and the world is coming at us both. Both of us are anxious. Both of us are hopeful. But the future is all on me. And so far, there’s no real answers and no real plan.