V’s 21st birthday was in February and a lot has happened since then. As of March he has been registered with a support coordination agency that oversees all the services he will receive as an adult. We already are receiving two afternoons a week of respite and in May he will have his first overnight stay in a home, so that we can go to our neighbor’s quinceanera.
And just this week we found out the big news that he has been approved for residential services and we can start looking at group homes. That is a huge step and one we do not take lightly. Finding a home that provides the best quality care, where he will be treated with kindness and respect, a place that is a good fit for him – that will be the hard part.
The fact is that V is still the same young man that he was months ago, with all the same major challenges and delays, yet he now is in a new category with its own rules and protocol and endless hoops that we keep jumping through. I’m grateful for each step we take and services we can get, yet I worry a lot about how he’ll do in this new world.
We soon enough will see. He has his first weekend away in an adult program next month. Run by Camp Fatima, an organization with a team of dedicated volunteers, the camp is free to participants, just like the Elks Camp was during all those wonderful seasons when V attended for a week. This will be different, though: it’s a much shorter period of time and most importantly, instead of having a 1:1 aide, the ratio will be 1:3 or 4, far less close supervision than he is used to or that he needs. (School is 1:1 or 2, by comparison.) This is the future, a bigger ratio of support to consumer, and already I am worried about how he will fare. If he doesn’t do well how does that portend for the following weekend, when he will have his first overnight in a home, the one we planned so that we can go out?
I recognize the need for respite, and the next step of a home for him but only when it is beneficial for all of us. It is so hard to know how V will adapt to the adult world. We are doing everything we can, with the help of a good home BT (behavior technician) to work on independent living skills, yet still there is a long way to go. There are so many everyday activities of daily living that he is resistant to or not accustomed to, from taking showers – he’s grown used to baths – to getting his hair cut. T cuts little bits when he is sleeping but then he wakes up and resists, so he has a raggedy back of the head, something we have covered up all winter as he wears hoodies most of the time.
And will he adjust to not wearing a hoodie when it gets warmer? Like many idiosyncrasies, this is a sensory issue: he likes the feeling of having a hood over his neck and head. We even have short sleeved hoodies, which are hard to come by, yet even with that on the other day when it was going up to 80 degrees he nearly had a meltdown when I wouldn’t let him wear a sweatshirt. How about wearing sneakers again instead of the slip on shoes he has worn down in the back because he wears them like crocs? There are so many adaptations that will need to be made.
We just adjusted his meds, under the supervision of his psychiatrist, so he won’t be so hard to wake up in the morning. Yet he still takes one medication at night that affects his appetite, so that he often doesn’t want breakfast until he’s been up for several hours. School, where he has more supports, allows him to eat something mid-morning when he finally is hungry, but how will that work for his weekend away or more in the future, when he lives in a group home?
There is so much to worry about and yet I realize how fruitless that is, and wish that this constricted knot I feel all the time could be loosened and I could look to this big new future with hope, curiosity, and acceptance each step of the way. I know that is the more skillful way to get through this next period of time. And yet I have become such a worrier, dredging up past and current difficulties and mapping them onto this still unwritten future. And yet in my gut I feel that, like the rest of us, he will learn and grow when he is in new situations where more is expected or required of him.
Fortunately I have some help to navigate the path ahead: case managers and counselors, a support group, wonderful friends and family, and for now a lawyer. I cannot write this chapter yet, only the preface in which I stand at the doorway and try to remember to breathe, to move forward one step at a time with trust and faith.