Wednesday, August 27, 2014

End of August

Things are going pretty good for Anthony.  I think school is making him tired, he is sleeping really well!  Sometimes he wakes up early, like 4:30 or something, which is terrible but mostly he goes to sleep a little earlier than he used to and sleeps all night, so that's good.  He seems fine about going, his teacher seems very nice and although I am not convinced that he is in the right place, my worries about immediate regression are unfounded so far, and I'm grateful for that.

He is still driving us crazy with Felicity, he gets right in her face and ... well, it sounds silly but he looks at her and that drives her bonkers and she yells and then he gets kind of wound up and it's a vicious cycle.  His respite care worker is beyond great, we all really like her and I think she is okay with all of us and seems to really like Anthony, so... things are pretty good!  What?  Who is writing this?  HA!

Here's a video Anthony's teacher sent me today.  When I look at him sitting there, at a desk, using scissors, it really gets me right where I live.  I'm glad no one was around when I looked at it, because it really made me cry like this BOO HOO HOO HOO HOOOOOOOO!  Ha!

video

Saturday, August 16, 2014

First Week

Well, we are finished with Anthony's first week ever at his new school.  It has been a doozy, but on Friday he had all smiley faces on his communication sheet, his teacher seemed very optimistic about it, so I guess it has ended on an up note.  It also ended with him pooping in the middle of the livingroom rug, but life is not the French Riviera, as I learned in the theme song from It's a Living, so.  What can you do.

This week, on his first day, some lady met us at the door and walked us back.  On Wednesday, Mike walked him in alone.  His teacher thought it would be better if we walked him in the first week, and we complied.  On Thursday, Mike and I bought brought him in, because we had a shitload of supplies to bring too, and we walked them all in.  Every morning, we saw people, said hi, everyone said good morning, etc.  On Friday, Mike walked him in and some old lady who was rude to him earlier in the week* chased him down and made him sign in.  To sign in, you have to type your name, the student's name, the date, and say why you are existing on the earth and in their damned building.  Then you have to TAKE  A PICTURE for your name tag.  So Mike said I've walked him in every morning, I'm just dropping him off, and Grandma Meany McSecretary told him too bad, you have to do it.  She actually said it was FOR THE CHILDREN.  I am so happy I wasn't there.  Mike did it and I emailed the principal and teacher and the principal wrote back that someone SHOULD have stopped us on Tuesday, Wednesday and Thursday but that was on them and in the meantime it is their policy blah blah blah blah blah.  So I said fine, we will drop him off.

*On Monday, when I went in to fill out the medical forms and see the nurse, I thought I was going to get enrollment forms too but no one gave them to me.  On Tuesday when Anthony started, they called Mike to complain that he hadn't left the forms and Mike said, my wife was there for an hour yesterday and no one gave her the forms.  But if you send us home the forms, we'll gladly fill them out.  Then the next day when he was there, the woman said "I'm so sorry that these forms weren't given to you in the long period of time that your wife was here".  Mike said he wasn't sure if she was being shitty or not but to me that just shows that he is VERY optimistic about life and people in general, because that, my friends, is a SHITTY thing to say.  So now I hate that woman.

On Thursday, when we had the supplies and Anthony and a box and his backpack, we were walking from the parking lot to the school and some teacher scolded me about how I should go to the crosswalk to cross because there was a bus coming, which, the bus was NOT coming, what am I, an idiot?  I am trying to get a bolter of a child from the car to the school without him running headlong into a bus, I know alllll about safety, thanks.  This is my problem with these jerkstore teachers (not you - I'm sure you are a great teacher and not a jerkstore) - they want to be in charge of allll the people.  I am forty six years old, and I have a Bachelors and a Masters degree.  I am the mother of four children.  I do not need you to tell me where to cross the street, you dummy.  This is what I want to yell at these ninnies, but I don't.  I just wave and nod and they think I am complying but under my breath, I am saying "fly away, shitbird!".

Mike went to back to school night, he really likes the teacher and I do too.  I don't think Anthony is going to succeed in this program but if he does I think it will be because of loving people like this teacher.  She wanted us to send in shoes that Anthony would keep on his feet!  She made an "!" too, ha ha, to show how much she meant it, maybe?  I have some exclamation points too, I thought.  Like, we have tried many shoes and he won't keep any on!  He threw one out the window last month!  He likes to take his shoe off and bite the ball of his foot!  Because he has tremendous sensory issues and you a-holes will only give him TWENTY MINUTES of occupational therapy a week!  Don't tell me your problems, lady!  Wait until he takes off his pants and poops in the middle of his desk!  Ha, I am cracking myself up here.

Anyway.  That was our first week, it was kind of exhausting living it and I hate to have to relive it and write about it but I want to keep a record, so here it is.

Tuesday, August 12, 2014

First Day

Well, Anthony had his first day at school today.  It's not his first day ever, because he used to go to public school when we lived downtown and he was in kindergarten, or was kindergarten-aged, but mostly it is his first day.  Mike and I took him together, which is nice, because although either of us could have taken him, I wanted him to know that we were a team on this, and everything.  I don't really know that Anthony would blame ME if he didn't like it or think that I didn't believe in him if just Mike took him, so anyway I am glad we could both go.  We met his program manager in the parking lot, so we all walked in together.  Someone, I'm not sure who, said "is this Anthony?" when we walked in, and came over and high fived him, and asked how our trip was, so I guess she was on the conference call but I have no idea who she was.  She was nice, whoever she was, so I don't care.

We walked to his classroom and met the teacher, she was as cute as ever, but kind of all business too, with Anthony.  She showed him his cubby, and where he should sit.  I mean - where he should SIT!  At a desk!  Mike and I were like, good luck with that!  We said goodbye and beat it, I was feeling kind of nervous that I would start to cry and that is not the image I want to leave with Anthony.  But then we got LOST, totally turned around in that damned school, and then we saw a woman I know from Maria's school, she just started working there, and it was a little hairy.  I mean, we couldn't have gotten too lost, it's basically a big circle, but I felt dumb.

We saw the nurse and gave her his paperwork and then we left.  Mike went to work and I went to the park and lunch with the girls and then at 3:25 I went to get him.  You have to park and go in the media center (library) and I waited and then his teacher brought him.  He looked happy to see me.  She said they had a great morning but the afternoon was crazy, which, um, I could have told her because his therapist was there all morning!  But she seemed very optimistic, so I am going to be, too.

We are going to bring him all week and then maybe next week we'll start dropping him off and maybe the week after that we will have him take the bus home.  It seems like all the bad shit that goes on with kids with autism goes down on the bus but it is going to be impossible for me to get the girls at 3:15 and get him at 3:25 so the bus it is!  He will have an aid on the bus, so I think it will be okay.  We'll see.  I'll be glad when those girls start school, so I can have some time to think.  As it was, I barely had time to worry today, so crazy are they making me.

Saturday, August 09, 2014

Update

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.