Disappointing email on Friday morning came in as Julia and I arrived at an anime convention in Westford.  

Nice thing about Another Anime Convention, yes, that is its name, is that there is a special ticket rate for those, parent or caregiver, who are there only for a kid. “Parent in Tow” is on my badge and I didn’t even have to explain why I wanted the rate accompanying an adult. The badge had some limitations but it was plenty for us.  I went to the “game shows” and the panels, including one very interesting one about women writers and performers in ancient Japan. Julia most enjoyed the hand sewing workshop that was pretty useful and very well done. The “Parent in tow” badge was about a third of the cost of Julia’s day badge. Convention tickets are expensive and I appreciate the break. So good on them!

Back to the email.  It was from The Price Center. The day center that I toured in August and was so excited to hear that there were openings in the program that I was most interested in for Julia. Back in August, it took more than a week to get Julia’s DDS referral packet to them. I don’t know whether that delay was the cause of the disappointing email. Really, may have or maybe not, but if it was, it is pretty rediculous to think Julia lost out because her referral packet was delayed by days.

I’ve been emailing the Vice President of Programs who was my post-tour connection looking for some update after August. Mostly without response. I kept writing every week and she responded last week, saying that my query was being passed on to the Director of CBDS  (Community Based Day Services) and ES. After not hearing for a week, I emailed him this week for an update and got this today:

“My apologies for just getting back to you now, but unfortunately as of right now we are taking referrals for a wait list but are unable to accept anyone into the program until we hire more staff.”

This was the same response I’ve gotten from The Price Center for two years.  Well, two years ago they would not even take referrals for a wait list. Is this progress? I wrote back to the Director with questions including asking for a sit down with him and a tour for Julia.  And he will be my point of contact from now on; however, right now, I am completed deflated.

I was not depending on a place at The Price Center.  Gosh, I don’t even know if that program would be perfect for Julia because I have not had the opportunity to sit down and talk about Julia and her needs with someone from Price Center.  I was not depending on The Price Center but it was a possibility and it is in our town which would have meant that program outtings had a decent chance of being to places that Julia either knew or lives close to.  And the chance of doing her library shift (and could be shifts) at the Newton Library and being supported by someone other than me. Maybe even a chance to volunteer that the cat shelter in town that Julia is interested in.

Is it me? Is it my approach? Too agressive, not persistent enough? Just not the best tone when I get in touch? Is it Julia? Is it the contents of her referral packet?  Is she not compliant enough to be wanted by a really good program? Is it DDS and our case manager’s very slow response? Did the Price Center have some openings in August or did they lie during our tour? Is lie too direct a term here?  Misspeak?

Is it anything that I can do anything about?

I have concentrated my energy for the last two years on finding placement for Julia at a day center. I’ve dabbled some in the supported housing world (which she will need) but kept my focus on services that might some day lead to employment.  I imagined doing this first, and only when I felt the placement was working well, would I switch to devoting time to Julia’s future housing and start systematically working through life skills lists that I’ve found.  Today, I’m second quessing that plan. Julia is unhappy where she is and the program will do nothing to accommodate Julia’s needs. 

And my head, I am blaming us. I am lost. We are who we are. By no means perfect.

There is another young woman who is finishing up this year in the same transition program that Julia was in. Her parents have found what they consider a “perfect placement for her” and she is slowly transitioning to it during her last months of the school’s transition program. This is the cadilac of transition plans and was not available post-Covid to anyone aging out of public school when Julia was. Admitedly, this young woman is much more compliant than Julia has ever been and probably friendlier and more group motivated. Perhaps she is much more socially in tune, perhaps she even wants friends.

I am jealous.  Evnious of this young woman’s mother for being able to navigate so much better than I can. Ok, perhaps this is only the Facebook reality and all is not as honky dorry (Does anyone say that anymore?) as it appears. Facebook is where I read about the young woman’s future.

But why can I do it?  Why can’t I manage a great day program and a path to independence for Julia?  I see it in her sometimes.  Admittedly, not all the time, but some of the time.  I just can’t find the right track to put his train on. The feeling of failing this morning is very strong in me.