Very rough day. Somewhere around 10 a.m., I received this email from a program director:

“It was great to see you and meet[] Julia this week. Our team felt that what we provide and the environment could be over stimulating for Julia. We think a smaller size structure program will be a good fit for her. I did reached out to Nancy from DDS with feedback. I am sure you will be able to find a program for Julia.”

That last sentence — “sure you will be able to find a program” — really stung.

Julia and I visited the program, Delta Projects, on Tuesday. Julia’s behavior was not perfect but by the time that we left, she was in conversation with some of the staff and a few of the participants. I was hoping that Delta Projects was a possibility for her. The director’s email quashed that hope.

This is the third program that Julia has been rejected from that I thought might be a fit.  Next week, Julia and her therapist have a short trial visit to JF&CS in Waltham; however, the program’s director has let me know that Julia might not be ready for their type of CBDS (“Community Based Day Services”) programming.  When Julia and I toured the program back in July, Julia showed some challenging behavior due both to her anxiety and to her understanding that she would not have unlimited access to the internet at the JF&CS day program.

Although I have been in touch with every day program within 30 minutes of our home, there are no other day program options for Julia.

This summer, the month-long PYD arts day camp and the Exceptional Citizens Camp took Julia away from Elliot House, her present day program, for 6 weeks.  Slowly she was weaned from screen time, not an easy task when she was at home but I thought we were making progress. She came back from sleep away camp on August 20^th strong then when she left.

Since Julia returned from sleep away camp two weeks ago, she has been at Elliot House 3 times a week. I hate dropping her off there because I know the lure of 24/7 screen time on their computers for Julia. This Wednesday at Elliot House, Julia was on the computer the entire day, even skipping lunch. Wednesday evening was extremely challenging—Julia was angry at me, she was loud and cursing, threatened me with harm, at one point refused to eat supper or to take a walk, both of which she sorely needed.  

Since she returned from camp, I have found things for Julia to do with me two days a week—library, art lesson, shopping, visiting Cheshire. This has helped limit the availability of screen time but Wednesday evening showed me that 2 days a week with me does not mitigate the harm from 3 days at Elliot House.  I also know that I cannot keep her home with me permanently until I find an appropriate program or until the PDP funds come through and maintain any semblance of an adult life or further Julia’s progress to functional independence and employment.

Our travels begin in another 10 days and she will be with me 24/7 for those 6 weeks.  We can be active and avoid long periods of time on screens which I am sure will help Julia; however, when we return home the options will only be Elliot House and spending time with me. A sure recipe for regression which will make finding a program so much more difficult.  

Today, I tried to work through the DDS-PDP paperwork today to set myself up as the Employer of Record for her Participant Directed Program.  Can I say again that this was not what I wanted to do?  Direct anyone’s day to day programming? The assumption that the participant, that is Julia, can be directing her own programming, or that I, as mother and advocate, can set up a program to further Julia’s independence and to educate her for future employment truly blows my mind!

Be that as it may, I worked through paperwork and hit a few snags—my address on the forms was incorrect, making them void if they had been submitted to the IRS.  The forms took two weeks for DDS generate and get to me. Also, one of the forms listed in the check list was missing. I complained loudly—well, via email—to DDS and the forms got corrected. The fifth form never appeared. By a bit after 5 when everything was closed down for the holiday weekend, I sent the four documents via email to DDS and to PPL (“Public Partnerships”), the financial management service for the state.

I fear that we are not on track to have providers for Julia ready to work by the end of October when we return.  Our potential providers do not have the on-boarding paperwork which I imagine is a bear to complete (Those employment applications were about 30+ pages in Wisconsin.) After next week, I will not be here to urge our providers on or to help them with paperwork. 

I am ending the day feeling incredibly and utterly defeated.

I am losing possibilities for Julia to lead a productive and somewhat independent adult life. The rejections are piling up. Pre-Covid, Julia was a pretty perfect fit for a program like Gateway Arts where she could spend her days making art.  By the time she interviewed there a year ago, she was not independent enough for them.  She used too much of the behavioral specialist’s time when she spent a day on trial at Outreach for Inclusion in June. 3L Place in Somerville was not interested in interviewing Julia after I reported her anxiety issues this spring, and the Vinfen program in Brighton, felt that although they have plenty of behavioral supports in place, that Julia would not be challenged by their activities. Add to that, Delta Project’s opinion that Julia needs a smaller and less stimulating structured environment.

A mother who blogs on Facebook and whose daughter with disabilities has another year or so in the same transition program that Julia was in, has written how she hopes that she can craft a gentle off ramp to replace the cliff that students with disabilities fall off when they finish with school based supports. That was me 18 months ago!  I can laugh or cry or both when I read about her efforts.  Perhaps she will be luckier than I have been.  Perhaps her daughter will be a better fit for more programs. 

I have to say I doubt it though.  Not to jinx her efforts or dim her spirit, but I have been working at least a little every day and many days a lot for more than 18 months, trying to craft some ramp, some bridge, a few stepping stone in the river, something, anything to facilitate Julia’s entrance into the adult world.  

So far, I am failing. 

That’s why “I am sure you will be able to find a program for Julia” stings so badly.  I’ve looked for a program for 18 months, I’ve tried to implement the PDP since the beginning of summer. If I make enough noise, contact enough people with a little bit of power, call and email enough program directors, I get a phone call, a meeting, an interview for Julia but I am no closer to something really good for Julia than I was 18 months ago.

And that feels like failure.