Last summer I wrote a status report about Julia.  It was rather grim but I needed to get it all down in order to understand where I thought Julia was, and to help me to begin to wonder in some sort of a systemic way, what to do next, where she was going, what I should be striving for, fighting for.  And what the hell was the goal!

The big question that was and remains: What will happen when Julia is finished with Community Connections (“CC”) next January on her 22^nd birthday.  [In Massachusetts, students with disabilities can stay in the public school system until their 22^nd birthday in compliance with the federal IDEA.  After high school, students can enter a transition program and in Newton, we have Community Connections. The purpose of the program is to teach independent living skills and job skills.  Students can then transition into employment or into the adult services programs run by the state.]  While services for students with disabilities is guaranteed until the age of 22; adults with disabilities merely qualify for services.  Depending on the state, the availability of funds and the willingness of the powers that be, students may or may not get services.  Even living in Wisconsin and Massachusetts, where there is  decent to good willingness to provide services, it is always necessary to advocate for services.   

For an adult with disabilities nothing is guaranteed.  And all services are so much more dependent upon money and the whim of the legislature. So, strong advocacy is only more important.

Julia is eligible for services from DDS and MRC; however, during my meeting with  representatives of both those agencies in late December, all I could think about was that Julia did not seem to fit into anything that either offered, unless it was a day program that seemed little more than baby sitting, somewhere that she could go to each day but not somewhere that could help her continue learning in order to move onto something more.

And I want more; I’ve always wanted more for Julia.  I have dreamed of some sort of relatively typical independent life with work, a career, friends, social life, life partner, home and hobbies.  These dreams have been chipped away at little by little, year by year. Yet, there remains a ghost of those dreams, some vapor of hope that she can grow into something that she is not now, the same way that typical young people grow into what they are not when they are 18, 19 and 21.

But during the last two years living in survival mode, I lost what I was aiming for and Julia does not yet possess the agency to take some aim for herself.  And lacking in agency appears to be a tremendous challenge.  So many programs for adults with disabilities demand that their services are driven by the ambition of the client. I have been asking, for what feels like years now, what happens when the client has no desires—no desire to learn about money or how to rent an apartment or how to get to work alone or how to get and keep a job.  

What happens when the client, child, student, adult is not ready for the education, services, activities when they are offered? This is a big hole in all of our systems from learning numbers and letters in school, to team sports to school dances. Everything is geared to the typical mind, the typical maturity level. This is true even with services, educational and physical and social for kids and adults with disabilities.  It would have been great for Julia to join a “little league” when she was 14. 

And now, or in a year, Julia should have the agency to ask for and guide the adult services that she is eligible for. Of course, there are plenty of typical adults who at 22 have little idea of their life path, but they are eventually driven by needing to live somewhere, pay rent, work at something, support a partner, etc.  None of that is in Julia’s vision.  Not yet.  And I insist on “yet” because I am not willing to let go of the possibility that she will develop her own wants, some version of agency that is uniquely her own. 

Just not now.  And probably not by next January when it seems to be so important that she take the reins of her life into her own hands. Interestingly, I just got an email from her.  She has been researching phones this morning during CC.  She is obsessed with having the newest and “best” phone.  She has a very decent iPhone 8. What she wants is a Samsung Galaxy S20+, the one that “has been made over in a BTS design, with exclusive stickers, pictures, and more. Enjoy the innovative camera and design on Galaxy S20+, now powered by the love of BTS.” She writes that if she gets that phone, “it will make her dreams come true.”

Is this the carrot to truly teach her about money, earning, saving and buying? When the student is ready . . . ? After years and years of conversations, work sheets, exercises and practice about money, will it be BTS who will make the difference?  

I laugh.  But, you know, I hope so.

Recently, since Thanksgiving, I have perceived that Julia is very slowly emerging from the bad days of the last years.  I lump together our transition from Madison with the insanity of the Covid years, and what I have had is a young person who had regressed pretty substantially.  I didn’t know if she would would ever have the capacity and the abilities that she possessed in June, 2019.  I don’t think she is completely back to what she was, but I see progress along that path.

And so, last week, it was time for me to advocate for a few agency-promoting activities for her:

I gave up last spring working on Julia getting up and ready for school without my constant nudging.  One day after CC last week, we sat down and talked about independence and getting herself ready for her day.  I had three suggestions and invited her to give me more—a check list, a poster or using our google speakers to remind her of the tasks she needs to do on waking.  She settled on the google speaker and together we reset the reminders, starting with finding a British voice to make the suggestions and playing different J-pop tunes after each reminder.  She now starts the morning with waking me up. I’m not sure why but that was so appealing to her.

She managed to follow all the prompts three times now, although I had to play the initial prompt more than once today. Each day that she used the prompts, she had time to do some morning family work. She did not resent my asking for her to take out the garbage and recycling this morning in the freezing cold.

Julia can get into the house by herself now.  When the van takes her home from CC, the driver usually pulls up to our house, honks the horn and waits for me to come to the door before letting Julia out of the van. This is a wonderful service but Julia needs to learn to get in by herself and possibly to get in without my being home.  She has no trouble doing this and has used her key sometimes when she returns home with her therapist.  I signed the waiver from the program and now she can practice every day.

I was so concerned when the DDS counselor told me that a Gateway placement was a “reach” for Julia and that opinion stopped me cold for a few weeks.  Last week, I got in touch with Ted, Gateways’ director, and asked about their requirements for new artists.  The only requirement that Julia does not meet right now, is her ability to work independently in a group of 6.  I think this is a reachable goal.  I asked her Inclusion Facilitator at CC about working on this as a goal and she agreed.

What’s more, Julia has been baking and cooking a bit at CC and doing more of that by herself, including deciding what it is what wants to cook and cleaning up by herself.  For the first time since the fall, I feel there are some concrete goals for her at CC.

Julia can get some services from DDS during this year as she transitions out of public school, and in December I spoke with Jacqueline Milian from the Charles River Center. She offered a few possibilities and said she would get back to me, but did not get back during this month.  So, I called her, reminded her of our conversations and asked about someone called a “skills trainer.”  These trainers are usually used to help people with disabilities learn to take physical care of themselves —bathing, dressing, etc.  I asked if a skills trainer could work with Julia about routines and independence.  I don’t know if that will be successful but I thought I’d try.

I found a day program agency in Newton that I want to check out.  Reading the websites never gives a detailed idea of what goes on.  I got in touch with the. director to take a tour and also to see if someone from the agency could come to a meeting of my Transition Support Group.  Seems like a two birds with one stone approach to investigation.

Julia is missing social events and Athletes Unlimited is having a Valentine Dance on the 11^th.  I asked if she wanted to go and then signed her up.  It is —duh, duh, dun—in person.  

And finally, I thought about that time between when CC will be finished—January 15, 2023—and when the next step will begin.  If it is a volunteer position or a job, it might be immediately, but as the DDS Counselor said, a seam-less transition is more a goal than a reality, especially if where she is going is a program that they fund.  (Ted from Gateway told me that the DDS “packet” that is necessary for funding is the part of the application process that always takes the longest.)  And so, if that be so, January 16, 2023, might be a good time to travel somewhere.  With prayers and hopes for a Covid-controlled next winter, we can go somewhere for a month or two.  And I can still bug, bother and/or advocate DDS from anywhere in the world.

Whew, update over!