Saturday, August 09, 2014


So here we are, after the denial.  A.D.  Ha!  We went to NYC last week, Mike and I, for our 10th wedding anniversary and we spent part of our visit on a conference call with Anthony's new school to see about him starting.  It's hard - it's hard to not be mad when you are not mad at the people with whom you are speaking, but mad about your situation.  But we talked to the person in charge of special ed, the classroom teacher, Anthony's program manager, Anthony's speech therapist, and the school speech therapist, and we decided that he will start there full time on Tuesday.  We have a meeting there on Monday - we have to go to a medical meeting to talk about the fact that he has epilepsy and might have a seizure, and we probably have to fill out a lot of paperwork.

The woman in charge was really pushing for Anthony to go part time there and part time to Little Star but we shot it down.  I'm not trying to be difficult, really, but we just think that he will do better to start where he's going to be and have the Little Star therapist go there and help him assimilate.  The woman - I don't know what her title is, but she was the person who was at the helm for the meeting said at one point that she had overseen like TWENTY FIVE of these transfers and maybe that impresses someone, but not me or Mike.  I don't care if she's done hundreds and thousands of them, I am only concerned with Anthony.  Finally I asked his program manager what she thought and she backed us up and so we said we could try it our way.  None of it is my way, NONE of it, I wanted to tell her.

She said that they would start out with 20 minutes of occupational therapy a week. TWENTY MINUTES!  I said that I had to be honest and I wasn't trying to be difficult, but that sounded like NOTHING to me and that my guess was that it would have to be upped very shortly after starting.  She said that Anthony should be in third grade and she asked if he would be taking the ISTEP, our standardized test here in Indiana.  I mean - it really made me laugh at first, I said sure, give it a try!  But then I was brought up short, as usual, because she said that because he couldn't take the ISTEP, they couldn't say that he was going to be going for a high school diploma, that instead he was trying for a certificate of completion.  That is what they give to people who have been to school but haven't, like, learned anything.  That always gets me right where I live, it makes it feel so permanent and final - like he will never amount to anything.  And I of course know that is not necessarily true but man, the fact that they have to WRITE IT DOWN when he is NINE years old makes me think no one is really going to be looking for scholarly success from him.

Anyway, I remain grateful that we are getting such great and wonderful support from Little Star.  I know that they are going to miss him too, he's so wonderful and I bet they will really miss him.  I am a little freaked out about transportation - in the beginning we have to take him to school and pick him up and he has to go to school after Maria and Veronica start but before Felicity starts and they have to be picked up at basically the same time.  If he is going to take a bus, the woman told us, he'd have to have a helper, so we can't expect to have it right away, we'd have to give her some time.  Mike said don't worry, we are not ready to put him on a bus yet, which we are not, but we are going to have to do it sometime.  I don't know how else we'll do it, the girls get picked up at 3:15 and he has to be picked up 10 minutes after that and it's 15 or 20 minutes away, at best.  I don't know what we'll do.

In a way, a small way, I am happy that he's going to go to school.  I am proud of him already, I know he'll do okay.  I wish he didn't grab me so much and I wish we would be more like 100% on toilet training but except for those things, I am mostly so proud of him.  I feel bad that I wrote about that letter that we had to write - I wrote that letter and all those things were true, but it's not really how our life is.  We are not miserable all the time, I mean, who is?  It's just when you are asked to describe your life and how HARD it is, it comes out kind of complainy.

Things are going very well with the respite care worker, she seems to like Anthony and he likes her and we like her and all is well with that.  It's good, even.  And maybe it will all go great in school.  I am foolishly hopeful.

1 comment:

Aly said...

Maybe I'm more emotional because it's 4:18 a.m. and I'm tired, but I doubt it!! I am literally sick and stunned that you guys are going through this. I have faith in Anthony, and I hope he shines! I don't have faith in the "system" you know ;) Full time public school and 20 min. of therapy..did I read that right? UGH! Prayers, hugs and kisses to all of you. Call me anytime you get a second..ha! Well, hopefully you'll have a second when everyone's in school. Stay strong and...Anthony: you got this, sweetheart! <3 God Bless you all. Love and miss you! xoxoxoxo