Friday, December 15, 2017


I remember reading years ago that the word 'teen' was from the Latin root for angst or misery or something.  Lately I've been thinking about it because I feel like our lives are pretty hard - I mean, we are not breaking rocks, we have a roof over our head, we have MORE than just that, we have a good life but overall, it's just hard and challenging to put so much energy into constantly fighting and arguing and saying, but wait! We need more than this! This is not fair! And then I think they are going to get harder, maybe exponentially, when Anthony becomes a teenager and then an adult.  It is daunting, to say the least. 

Today we are supposed to find out from Anthony's center whether or not he can go there next Friday, the following Wednesday, Thursday, or Friday.  They are closed from the 22nd through January 2, but because we, and, I assume, other people who have their child in therapy and not at a typical school, have complained that it's hard on their kid to be off like they are not in need of this therapy.  The more I think about it, the madder I get.  This year there was a poll to take, will you send your learner in if we had these days available? So of course Mike and I filled the poll out YES for all the days, then we get a form that we can fill out last week, where we can say AGAIN what days we would like him to come, THEN we find out that if a therapist wants to work, maybe he can come.  Um.  As Mike said, that is so _____ stupid, who will come to work if given an option to NOT come to work? And to add insult to injury, they are closed next Friday, when the girls are still in school and when all three are taking part in the Christmas program at THEIR school, so we are assuming that we are going to find out that no therapist wants to work so Mike will have to stay home with Anthony.  I had already gotten a sub at work that day because of the program and the girls' early dismissal.  What can you do? I complained and I am told about all the things that happen during a shut down, floors cleaned and waxed, painting, etc., etc. and I think - who cares? I don't care! I understand what happens during a shutdown! They used to have a shutdown at my Dad's company, because they were a FACTORY! Hospitals don't have shutdowns! The place where Anthony and Veronica go to speech therapy is closed the day after Christmas and that's it.  I am also told that in order to stay competitive with the schools, they have to give out holidays like the school to get good therapists.  Um.  What schools have ABA therapists?  The whole CRUST OF THE BISCUIT is that ABA therapists are not teachers, that an ABA therapy center is not a school, what in the everloving hell?

So.  There's that.  We have accepted the fact that Anthony will probably be home, and we are planning accordingly.  We are doing rakishly okay with respite care.  We really like Anthony's new respite staff person, she is very nice, studying special ed, nice to the girls and to our damned dog, who is the neediest jerk you have ever met.  But Anthony is so challenging lately and there are times when he - oh, moves out of his seatbelt when you are driving, or lays down on the floor of the car, or drops down to the floor in the mall, or or or - just terrible behavior.  So we are working on it, as usual.  We have been taking the girls out on Monday and Wednesday so they can be home and maybe be a little more relaxed about going out and it's going okay.  His program manager came to the house for one of his sessions and gave the woman who does his respite some tips, I mean, maybe it will work out.  Maybe not, maybe this is just how it is, maybe he will just get crazier and crazier until he kills us all, who knows? WHO KNOWS? But presumably, as long as he doesn't, maybe she and he can do some stuff during the break and he won't be too miserable. 

I found out about this Parents Night Out at Easter Seals Crossroads through a Special Needs Parent group that I'm in on Facebook (which I'm not even on right now for Advent, it was making me too crazy and no kind of Christian). I emailed the person and called the other person and NOBODY got back to me, so I just printed out the forms and filled them out and mailed them in with a note about how NOBODY had gotten back to me.  The woman who runs it called me and said she was so sorry, blah blah blah.  Then she said Anthony is almost aged out of the program, in June he will be 13, and he could do a teen group but it's in Carmel, and it sounds like Anthony needs one on one care and they don't offer that so it's probably not a good option.  This is the first thing she says to me.  I'm like, okay well, how about the next six months, can we talk about that? She says, yes, but it might not work out for that either, because (and not in so many words) she says that Anthony's behavior sounds pretty crazy and they have 'medically fragile' people there and also neuro typical siblings who can be as young as six months old and they might be in danger if Anthony is there.  This is hard to hear.  First of all, all she has said to me is negative bullshit about my son whom she has never met and second of all, she sounds like an absolute idiot.  I mean, it's Autism 101 that you don't put the slappy 12 year old around the medically fragile six month old? And why isn't Anthony medically fragile, only the way that he expresses HIS disability is that he has some behavior problems?  I asked her if she had other kids with autism there and she said yes! They had many autism experts there! And behavior therapists! They had a whole autism department AND different rooms there and a sensory room!  THEN WHAT IS THE PROBLEM? I want to say, but I don't.  I said I find this to be a very negative reaction, that before you say anything you say all the things that could go wrong, and I find it especially negative when you only called me back after I called, emailed, and finally used the UNITED STATES POST OFFICE to beg you to get back to me.  And do you know what she said to me?  She said I'M SORRY YOU FEEL THAT WAY.  I mean, really! Who still issues that non apology? Don't we all know that's not a thing anymore? I said I'm sorry too! Sorry that you made me feel this way when all I get is negativity and bullshit from the regular world and you are a place for people with disabilities! I'm SUPER sorry about that! So I said, what is the next step? What else do you need from me? And she said, all Hoosier buttsore that I told her what time it was, that the next step was for her to do an assessment and then she would call me back.  I said okay I will wait for you, then she sent an epilepsy seizure plan and I sent it back and she sent an email that said "this is the confirmation that I have received the seizure plan". I was DYING to send an email back that said "this is the confirmation of the confirmation beep boop" but I didn't.  So we wait, if she deigns to get back to me, maybe he will be able to go to a Parents Night Out and then if he is badly behaved or has any problems, I guess she can say he can't go anymore.  Did I say this is a respite thing? That he "gets" to go to it because he has the Medicaid Waiver. 

He has the wrong kind of autism, I'm made to feel all the time.  I ran into a woman with whom I used to work a few weekends ago and she mentioned her grandson had autism.  I said oh how is he doing? She said he's great! He's on the Chess Team at his school! Oh, I always think.  Never mind.  But I was talking to Anthony on the ride home yesterday, I said you know Anthony, you have autism.  And that makes you behave in some funky ways, you have different reactions to things than the girls do because they don't have autism.  That's why you go to your school and they go to their school, you have different gifts and abilities.  I said Daddy and I love you and we are proud of you and we will never stop trying to help you, we will get through this! And Anthony said, wheeeeee youuuuu!, which I imagined as thank you, Mom, that support means the world to me.  I am going to keep repeating positive things until they come true, or I lose my mind and drive off the road, whichever comes first.