21

21. 

V turns 21 today, February 9th, and I need to parse out what that means in terms of his future, and what it means in the moment, to find a way to celebrate that my youngest son has reached this milestone while grappling with the huge tasks and uphill battle we face in the coming years.  So first:

Happy Birthday V! You are a fine young man with many strengths and gifts and we are so proud of how hard you work to continue to learn and grow. We’ll have some favorite foods for dinner and then a cake and sing to you and you can blow out the handful of candles that represent 21 years you’ve been on this earth. We hope that this will be a wonderful year for you. Although so much is uncertain and we don’t know when or how your life will change in the coming few years, know that we are here for you, that we will always advocate in your best interest.  You are such a happy person (usually : ) and we will do everything we can to keep you feeling good about yourself: confident, stable, safe, content.

That’s the easy part, the good part, the celebration of life of someone we love.

Then there’s the rest, the “falling off the cliff” part we’ve been girding ourselves for, when you age out of the formal schooling of the education system at age 21 and there is no legal mandate or federal requirement for providing supportive services. So 21 looms large in the life of families like ours. Fortunately we are working hard so we don’t fall off the cliff, assuring that you have all the services you need in this new chapter of your life. We’ve already gotten over a few big hurdles and are gearing up for all that is left to do.

We were successful in getting an extra year of school thanks to the Bridge Year, which our governor enacted to serve students who lost out on significant education due to the pandemic, so it takes a lot of pressure off of finding a day program starting this summer. That means you get an extra year at your familiar school.  

Our reassessment was successful in changing tiers so you will receive the maximum amount of annual funding for services. Having a lawyer is a big expense for us, yet it’s worth it already: we’ve practically doubled the funding you will have access to each year, which should mean you can have all the supports you need to thrive. (Something, of course, everyone deserves.)

We edited and signed the letter from hell, crafted with a good lawyer’s precision, 2 full pages of the absolute worst highlights of the 18 page assessment, making the case for why you  should be moved up the 12 year waiting list for residential placement.
It was a painful document to read, far more piercing than the longer assessment with its flat fill in the blanks format. While I hope it will be effective it is difficult to see on paper a story I’ve never let myself fully believe. I tell myself it’s a tool, a necessary step in getting what we need. It is our lawyer’s job to get action from public agencies notorious for moving slowly or not at all.  Still, it is hard to take in the portrait that it paints, all dark gray and black, a picture of dire circumstances that are unbearable.
We have learned to live with challenges; they are woven into the fabric of our lives yet they are not our lives entirely. There is much joy and contentment stitched in as well,  Life is full of difficulties yet it is more than that.  I couldn’t survive otherwise.

We’ve selected a support coordination agency and filled out a 20 page personality profile that gives us the chance to show a better nuanced picture of you, one that includes your strengths and likes and a vision for a happy future. It too took a long time to fill out. I’m relieved we have a good agency to work with, that we are starting off this brand new unknown world with people who hopefully will be on Team V and help us receive all the services you need in the future. We just had a two hour meeting with them to review what this new stage of life might look like. They gave me a glimmer of hope…as well as eight more forms to fill out.

We are not falling off a cliff, we are peering over the edge yet firmly grounded in safe territory.
There are many more next steps but we don’t know what they are yet.  Fortunately we have some guidance, and we will face each new hurdle as it comes. I am cautiously optimistic yet not altogether comfortable. There are so many unknowns.

For now, Happy 21st Birthday V. We love you and will do everything we can to make it a good year and to give you a future that is bright.