State of my world:

Julia’s head scratching has not abated with the delousing and aftermath.  She is losing hair and areas without hair are increasingly visible to the casual observer.  I think she is doing most of her scratching at night before she goes to sleep and when she is alone in the bathroom.  Anxiety, habit, stimming or something else?  Years ago, the way she finally stopped scratching her skin was on a three-strike-and-she-was-sent-home-from-school program.  It was radical and it worked.  I don’t know right now how much scratching is going on at school — I’m checking.  I don’t think that school staff would be willing to put such a discipline into effect.  Of course, if it is mostly at night, that it wouldn’t work anyway. I am in full worry mode.  We will visit our doctor next Tuesday and her shrink on Thursday.   OT is working on it as well. Needless to say, I am without control.

I spoke with a local reporter yesterday about Shabazz High School and my experience last spring when Julia applied for admission and was first asked for an interview and then rejected before the interview took place.  I talked about inconsistent messages and requirements, and apparent exclusion of kids with IEPs.  I told him that just before school closed for the summer and we were about to travel, how I got a call that they were reconsidering everyone who had applied and was rejected.  (I don’t remember if it was rejected without interview.)  Julia couldn’t interview before traveling and when we returned home, I check out the requirements again.  Julia had been summarily rejected for not doing grade level math.  Neither the requirement for doing grade level math nor her math skills had changed.  I decided not to put her through an interview.  I acknowledged to the reporter that the school has been good for kids there and I didn’t want to jeopardize the school for those kids.  And yet, what of kids like Julia?  I am conflicted.

Halloween was fun for Julia.  She announced that it was the best one ever.  I hadn’t delivered on the costume she initially wanted although she liked the shirt I eventually found online.  She was the best she’s ever been at the Halloween script—Trick or Treat, Thank you, Happy Halloween—and she complimented many kids we passed on good costumes or cuteness.  She was thrilled to see kids she knew although most of the time she needed to ask who they were—Julia rarely recognizes people outside of their usual surroundings.  She was nervous in front of a few well-decorated houses and took seriously my choice to go up to the door or pass the house by.  And she did both.  

The best part of the night for her was a visit to friends a few block away.  Two high school girls who have loved Julia for a long time.  Both girls had friends over and Julia hung out for awhile.  I didn’t impose longer than I thought we could.  Julia wanted to stay much longer to watch scary movies with the girls.  It can be impossible for me to judge when Julia/we are imposing.  I don’t want to stop Julia from socializing but I don’t want her to wear out her welcome and then not be able to stop in and visit another time.  Autism sucks!

I spent an enormous time this week writing emails to Boston area schools for Julia for next year.  Yes, I am thinking of moving.  I don’t know if it will come to pass.  I am conflicted to say the least.  I love Madison and the community that I’ve built here.  I love First Unitarian and the friends both at church and through the schools Julia’s gone to.  Julia has a relatively stable school experience and a cheer team that she loves.  I have a great house and neighborhood.  This is a wonderful city.

It is awful to disrupt Julia’s high school experience.  Life for her is relatively smooth. I have gotten much more efficient at advocating for what she needs—there will be yet another meeting, hopefully short, next week to iron out what Julia needs to take tests and when she needs it.  She studied much too long over the last two weekends for the Thursday Earth Science test.  Some of it was good studying except that the day before the test, word was sent home that the test included two study guides and a page in the text book.  She was master of what she had studied but couldn’t take on more the night before a test.  She  managed to get a 57 on the test.  It was no surprise to me with the omitted material and Julia’s test taking skills.  However, some caveats here—the average grade was 62 in the class and she took the regular (not modified) test in the same amount of time as the rest of the class.  All to to her credit but damn! I bet she would have passed if she had the right material.

I’m not saying that use of the study guides was not discussed in class. I’m sure everyone else knew but Julia does not remember and it was not written down in the assignment notebook.  I’ve opted for concentrating on course content and for relying on teachers and aids for communication.  I guess we could work the other way but she doesn’t seem to be in a place to work on remembering everything said in class.  I could be wrong.

My current mantra seems to be: I could be wrong.  Those four words could have come after almost every paragraph I’m writing.

The reason for leaving Madison is to be close to Cheshire.  Our family is small, just the three of us. The reason for doing it in the middle of Julia’s high school career is because as a student, she is entitled to school and social services.  She is entitled to transition services which will possibly be instrumental in securing work for her and  to connect her with adult social services.  As an adult, there is no entitlement, there is only eligibility.  Eligibility comes with funding constraints, waiting lists and budget cuts.  Someone coming into a new community as an adult is at the end of the line for everything; someone moving from student service to adult service has a somewhat better chance of a seamless continuity of services.  And then, there are the community connections which are much more important for someone with disabilities than for typical people.  Dane County (where Madison is located) used to have an incredible record of employment for adults with disabilities, but with a change over to a system in line with the rest of the state, there is no assurance that the rate of employed disabled adults will remain high.  Of course, those delivering services will try to keep numbers high but the numbers for the rest of Wisconsin are dismal and no better or worse than those for Massachusetts.  

There is an even longer term component.  I am struggling right now with whether or not to seek guardianship for Julia.  I expected to do it— she is not ready or able to assume responsibility for herself in a few months when she turned 18— to file with the local court for guardianship.  However, guardianship comes with the requirements to file reports each year with the court, it is not easy to leave a guardianship situation and Julia will go to court and hear a judge declare her incompetent and in need of a guardian.  I talked to Julia some about guardianship and she does not want it.  This can be overruled by a judge depending on reports from a doctor and a guardian ad litem.  If she doesn’t want to have a guardian and if the court grants it, she gets to know that at least three other adults believe she cannot be responsible for herself.  

There are other ways to control and protect an adult with disabilities using powers of attorney for financial and health care matters and a contract for education.  This would work well for now; however, guardianship can come with additional powers.  It can be necessary for a guardian to approve of taking medication, marriage, travel, relocating, birth control and more.  Julia doesn’t need these safeguards now but what about in ten years?  Julia can probably be convinced to agree to a guardianship proceeding right now but when she wants to marry someone who will take advantage of her or move somewhere away from everyone who cares for her?  If I do it now, I can apply to make Cheshire a successive guardian for the future.  Without that, Cheshire could be caught in this same or a worse circumstance I face now after I die.

I am wrestling with these angels.  And whatever I decide now, I could be wrong.

While all this whirls around me, the world marches on.  I voted the other day at the library and was please to wait on line.  Others in Madison have reported similar experiences.  I hope all early votes are counted, I hope voter turnout is bigger than a presidential year, I hope Democrats wins and the House turns.  That is the guardianship our country needs right now.  Not perfect, of course, but necessary.

There was a notice today that after the election, all are invited to gather at First Unitarian for a post-election service on Wednesday, November 7, at 5:30 pm.  There was an impromptu gathering after the 2016 election.  Have there been other gatherings after elections?  Right now, whatever the outcomes, gatherings of like minded people feel essential.