Thursday, August 30, 2018


Anthony has been doing this thing lately - I mean, he has done it forever but recently it's been every night and late into the night - where he bangs on his door.  We got him a nice heavy door installed but it's totally a situation of, all the better to bang the shit out of the door, guys, thanks! We have been ignoring it the last few nights and it's really helped.  The problem is if he needs attention of the bathroom variety, we don't know until we go up there.  Luckily he is banging the hell out of his door so he can't hear us go up but it's trying.  I mean, it's all super trying! I don't want to complain all the time but MY LORD it is making us really tense.  All weekend he just screams and screams and SCREAMS and SCREAMS. 

I want to say the screaming and the shitting are really ruining me but I don't want to be crude.  The wailing and the wasting? The pooping and the pppppp party noises?  I can't make it work, so I guess we will stick with the crude one.  During Anthony's whole life, I have thought if I can just fix this one thing I'll be okay.  If I can just get him to not scream so much, sleep better, stop running away, eat better, on and on and on.  But I do feel like this is the hardest part, the bathroom issues.  The bathroom and the blathering, ha! It's hard because if he has an accident, you have to take care of it.  If he pees on something when you are out, or GOD FORBID poops, that's a pretty big matzoh ball out there, you have to take care of it.  If we are at home and want to put him up in his room because we've told him, if you do _____ again, you are going to your room, we have to put him in a pull up and put him in those pajamas and THEN put him in his room.  And he's thirteen! Am I going to be doing this when he's 18? 23? Good God, it's too much to think about. 

I feel like my ears are ringing all the time, like when he was little and I could hear him screaming no matter where I was.  The other night Mike and I had both fallen asleep, and he woke us up banging on that door, I mean, it is a modern miracle that it doesn't wake up the girls but it sucks that it wakes us up too.  I can't believe it doesn't wake them up, I can't believe it doesn't wake up the neighbors. 

Anyway. I don't know what my point is.  Life is hard.  There's the lesson for today!

Medicaid Waiver in Indiana

An Open Letter to Anyone Responsible for the Medicaid Waiver in Indiana:

Anthony has had the Medicaid Waiver for several years now.  I think it's been five years.  We have really only had one good year out of those five, and by one good year I mean a year in which we could use the waiver, and we could be confident in his respite staff, that we could actually get some respite from constantly caring for him.  We went to NYC for our tenth wedding anniversary, so it's coming up on four years, I guess, and his respite staff person met my parents at our house every day after being at Little Star and she took care of him until bedtime, when she got him through the bath and gave him his medicine and got him ready for bed and safely in his bedroom.  After she abandoned left us to move on to greener pastures, we have really not had anyone since, for any reasonable amount of time.

We had the one who thought Anthony was "messing with her" and who was "embarrassed" by Anthony.  We had the one care company who thought we should look for someone to be respite staff at maybe our church.  We had the one who took off all the time.  We had one who treated the job like it was what she could do if she didn't have any other plans.  We have a great one now, but she started this past Monday and her last afternoon with Anthony is next Wednesday, and she'll be off Monday for the holiday, ha! We are hopeful that with summer break coming, we will have more staff available to fill in for more shifts.

We ended up doing three nights of Parents Night Out at Easter Seals Crossroads and it was great, every time.  The second time the girls went and they had a great time - Felicity didn't go because she had a softball game, but it was fun for Mike and me to be able to go to a game of hers together.  It was so hard to get him started in those Parents Night Outs, I always feel like I have to fight for every damned thing with him and I'm so sick of it.

The other day at Little Star, I was talking with his therapist and she was looking at him so fondly, she was saying that she is trying to stay with him a little longer, she likes him so much.  I mentioned to his morning therapist that I was looking at a fellow learner's long hair and man bun and I was thinking maybe that would work for Anthony and an hour later, I get an email from his program manager with pictures of the man bun she had crafted for him.  They all really love him! I have to remind myself of this because so many people are so thoughtless, they make me think that he is not lovable.  I have to fight for so many things for him, I get caught up in that thinking, I think maybe he doesn't deserve it.  It hurts my feelings that someone doesn't want to spend time with him! Which is ridiculous because it has nothing to do with him, most of the time.  If someone who is supposed to do respite care work with a child who has autism and they don't LIKE him, then I don't want them to do it anyway.

But it's so hard.  We are feeling so jerked around by the woman who hires the staff people, it's almost comical.  Someone starts and we like them and they literally can only do like three shifts because they have another job.  I was telling the afternoon therapist that and she was like, why would she only work three shifts?  Why start at all?  YES EXACTLY.

I want them to know that even when we have respite, it doesn't really free us.  We are never free of our obligation to take care of our kids, even if we are at work, or asleep, or not in the same state as they are! We have to take care of them and they are always on our minds.  But Anthony is on our minds in such a different way, it's so much different with him.  Even when I am at work and he is at home with Mike, I am still worried about him.  When Mike is home with all four of them, it's so hard, and doors can be left open, Anthony has run out several times while I've been at work.  This is not to say that Mike can't take care of him but it's just that when it's just one adult and all four kids it's almost too much.  It's getting easier as the girls get older because they don't leave the doors open as much, etc., but man.  It's heavy, figuratively HEAVY on my heart and brain.  I am always afraid that he is going to run out the door and into traffic.  That he will have a seizure and suffer instant death.  That he will jump out of his window.  That he will - I mean, anything.  He doesn't have the capacity to stop himself from getting hurt and in fact engages in behavior that could hurt him and I feel like I never take a deep breath until he is asleep every night.  It's exhausting.  It's beyond exhausting and it's never going to stop.

But when we used to have our wonderful respite staff, I felt like we could relax a little bit.  I felt like we could be with the girls in a different way and they could see me in a different way.  It took a little while but once we got there it was so great.  It was so great, in fact, that Mike called it when he said this is never going to last, she is going to ruin every one else for us.  And he was right!

We off this waiting list after being on it for five years and it's almost worse to have had it and now not have it.  It's not definitely worse because Christina, our wonderful staff person, was so great and really taught us a lot about Anthony.  She could presume competence in him in a way that I still am trying to do, years later.  So it is better to have loved and lost, in this case.  But I would like to love again!  I would like to find someone who could really like Anthony and enjoy seeing his progress and spending time with him.  I would like to go out to dinner with Mike sometime at dinner time.  I think of the song from Fun Home, I want, I want, I want...