Julia finished her month of arts camp. She still doesn’t have her phone and her internet use is limited. Sometimes her behavior is challenging but overall, she is returning to our real world. PYD, who ran the camp, is staffed with supportive and loving people and Julia responded well to their kindness and attention.

Next week, she doesn’t have a schedule but I am not sending her back to Elliot House. She will go to a sleep-away camp the following week. We have a tour of a program on Monday and during the week, we will go to the gym often. Tuesday, her wonderful therapist, Michelle, is taking her on Codzilla. Michelle also bought her a pair of boxing gloves and learning boxing is an ongoing activity with the hope that it . Perhaps this will be a good outlet for some anger.

Julia and I will go to the beach one day and to a museum on another. She is starting a summer session of cello tomorrow so there will be practice, and her rowing coach has been having her row in a double at least once a week. After her last practice, the coach asked Julia if she would like to race in the fall. This is very exciting.

Day-to-day life is not necessarily easy but it is better than it has been. Focus has always been a challenge—too much or too little and almost never on the most appropriate or productive topics. However, this summer she has maintained some very appropriate focus when she is rowing. Again, like the PYD arts camp this is an incredibly supportive activity. Coaches, volunteers and parents are enthusiastic and helpful. Possibly, most important, there is a sense of community and investment in all participants.

I could wonder why I am only beginning to recognize these necessary program attributes now, but I think that what she needs to flourish has been a part of so many activities that she has engaged in. It has taken a day program that does not meet her needs to recognize how important what she does need. Support, care, relationship, a bit of challenge and choice needs to be built in every part of her day for her to flourish.

Many people talk about the cliff that students with disabilities fall off when they finish with school based supports. No where to go, nothing to do, no supports to do it. I was hoping to avoid the cliff but I think we’re fallen long and far, and only beginning to recover. Over the last 18 months, I tried to be diligent, to investigate and research, to make contacts and plans, and to some extent I have, but these post-Covid times can defeat the very best laid plans. And to some extent, they’ve defeated me. During Julia’s time in her transition program, I thought we were making some head way to get her back to her pre-Covid self. Six months at Elliot House pushed her right back, maybe not to zero but close.

And now to find that in a traditional day program, as well as solidify one-to-one time with people, other than me, who are invested in her.

Because there is no traditional day program that Julia can join in the near future, I have been pursuing the DDS self-directed program. I did not want to pursue this option and I have dragged my feet, insisting that I wanted to find a good traditional program. However, I’ve given in, given up, let go of insisting. Don’t get me wrong, I am still pursuing traditional programs, but . . . At a June 1st meeting with Julia’s DDS transition coordinator, I asked to join the self-directed program. The coordinator promised to set up a meeting, with the appropriate person, but a month later, nothing had happened and the coordinator stopped responding to me. I felt like time, like sand, was sifting through my fingers. Time marches on—and nothing was happening apart from my increasingly angry emails and phone calls. A side note: Julia’s MRC (Mass Rehabilitation Commission)’s facilitator who cannot offer much material support at the moment (Julia is not ready to use the services.) is wonderfully supportive, responding to every email I send even when she can do nothing. For her, I am very grateful!! And another note: through indirect means I found out that Julia’s DDS coordinator has taken a leave of absence. No idea of when that happened but it might explain her silence; however, someone should have let me (and I’m sure many others) know.

Late June, I began to look for other people at DDS to talk to and found a supervisor and an ombudsman. It was the middle of June, the beginning of July, the middle of July and still nothing was moving. It was the ombudsman who started pushing. In the last two weeks, I’ve had a 3-hour zoom with a DDS person on the self-directed side and she has sent me a boat load of paperwork to begin. It is a lot to wade through and will take a lot of my time; however, I have a leg up in that I had to do some similar paperwork and had similar responsibilities in Wisconsin when Julia first joined their adult program.

I now have a budget for a 3-day a week program; each day will be 6 hours. Most of her budget I will use to pay people. My plan is for Julia to volunteer at the library for 2 2-hour shifts a week (I asked for 3 but very happy we were approved for 2.). Then, Julia will work with her art mentor (working on art and setting up an etsy shop), learn to bake and make candy with a candy maker, and work on daily living skills (planning meals, shopping, cooking and taking public transportation) with Ed who has worked with people with disabilities.

My very ambitious goal is to finish all the paperwork before we leave to travel in September. If she can get 3 days a week one-on-one with these people who she knows and is comfortable with, I am hoping that it will serve as her stability. Like school, like home, like cello with Miles and rowing with Lucy.

On the two remaining days remain, she will go to Elliot House until I can find something else. My hope is that I can find and she can be accepted to a new program before the new year. Not sure how overly-optimistic I am.

Then, when we find a new traditional program, I’ll use the 3-days of stable activities to ease the transition. I am not thinking about when and if she will transition to a full time traditional program. That is just too far in the future.__