Tuesday, October 21, 2014

First IEP Conference

So today was Anthony's first case conference while he was an actual matriculating student.  I was not looking forward to it, because I wanted to talk about two things in particular.  The first was that his teacher mentioned to me that one of her assistants was a "yeller" and had yelled at Anthony, that that was her way of getting his attention when he was misbehaving.  I mean, it's not that I think Anthony is a perfect little flower and never does anything wrong, it's not that *I* haven't raised my voice to him over the last nine years, but he is in a special education classroom and I don't really think he is misbehaving when he is climbing on a table or something, or shouting, or crying.  I believe that within autism, all behavior is communication and if I didn't believe that, he and I would both be in trouble because he acts in really crazy ways sometimes.  Also, and this is maybe more particular than I get to be at this juncture, but my whole thing with these people is that we brought Anthony to them and said what do you think?  He is prescribed 40 hours a week of ABA therapy but the insurance company says he is ready for his free and public education, what do you think?  Basically we said I don't think you can handle this, and they said we can handle this.  So if they can handle it, and they can provide his special ed teacher with assistants who can handle it, I don't expect "yelling" or "screaming at him" to be an acceptable form of teaching.  So I mentioned it at the conference and hoo boy, it got very awk and uncomf, to quote my friend Brenda, in that room.  The principal and the Special Ed Coordinator or whoever she is, all of a sudden sat up like they had something rammed up their backs and the Special Ed Coordinator was all, um, er, argh, was there an incident?  Because I don't know about an incident.  So the teacher said that she was working with the assistant and it was getting better, plus Anthony wasn't doing any of the behaviors that he was doing so it was kind of resolved at this stage.

Then the speech therapist said how she really thought it would be great for Anthony to try this LAMP approach, instead of Pro Lo Quo on his iPad, which he has been using for a long time and it would be great because he could have more icons and more words and he could really have a language explosion because he would have more words! and he was doing AMAZING with her and I was all, hold the phone.  I mean, I said, the only way I could agree that Anthony was doing amazing with you is if we have completely different versions of the word amazing.  I said Anthony is not using his iPad here at all, hardly, and we know that because he has been backsliding in quite a few areas, like making requests, and also because his iPad usage is just fine every day when he comes home from school, when he was at almost nothing left when he used to come home from a day at Little Star.  I said that Anthony had been working with Pro Lo Quo for quite a while and that it indicated to me a COMPLETE LACK OF AAC devices and Anthony for her to cavalierly mention that she thought we could just switch it up so that he had more "core vocabulary".  I mean, you can put any words into Pro Lo Quo that you need to, it was just bs.

So this was the point where I said that between the screaming assistant, and the lack of iPad usage, the speech therapist saying that he could only take the iPad home for "educational purposes",  and the fact that some of Anthony's 'friends' at school were touching his iPad, his iPad that had a case without a handle, I said all those things together were adding up to make me think that we had a giant disconnect and a misunderstanding of autism, Anthony, and how Anthony uses his iPad.  I said our goal is for Anthony to use his iPad as his mouth and even if the other kids really liked his mouth and it was super cool, it didn't mean that they could play with it or take it away from him.  The school couldn't say that he could only bring his mouth home if it was for educational purposes!

I got kind of upset, when I was talking about the assistant yelling at Anthony for 'misbehaving'.  Right after I talked about that, I went to the part of the IEP prep documentation where the OT said that Anthony used his iPad to request to go to the bathroom and then he played in there so that he didn't have to do any work.  Angela and Kasey, his program manager and speech therapist were clearly shocked and they were kind of upset about it, I thought, and so that made me more upset.  I said, in a choking voice, that Anthony is the hardest working person that I know and that for this occupational therapist to say that he was going in the bathroom to get out of OT was just insane and proved my point, over and over, that they didn't know what they were doing with him.  I said I think Angela and Kasey can back me up on this because they have ACTUAL DATA to show that he works harder than anyone at Little Star, that he flew through his PECS training because he is so smart and devoted to the idea that he can communicate and be HEARD and that for this yahoo to say that he is just going in the bathroom to get out work drove me insane.  And all of this was delivered in a choking voice that I could barely get out of my furious chest, so they were all a little worried, ha!  I mean, I wish I were just the kind of person who could just talk about things that are incredibly important to me and about which I am furious without crying, but I am not, and I don't see anything changing at this late stage in my life.  I was actually just happy that it was a crazy-seeming crying, because I want them to be a little afraid of me, ha!

So everyone talked and we seemed to come to some kind of agreement and then the Special Ed Coordinator said that I mean, Anthony has the ability to communicate, his iPad is RIGHT THERE next to him and I mean, there are times when kids in school aren't supposed to talk anyway, right?  And then I said well now, you have me thinking that although I am TALKING, I am not COMMUNICATING with you because for you to say that makes me think that you don't understand this at all!  I said I don't want Anthony to have his iPad at the ready so that he can INTERRUPT or BABBLE during circle time, for the LOVE of GOD, but everyone else gets to bring their working tongues and mouths to circle time, just IN CASE something comes up and I think Anthony has the right to have that too.  You giant jerkstore, I wanted to say but didn't.  She said blah blah blah of course that's not what I meant, blah blah blah.

THEN she asked about the Extended School Year and I said yes, we were concerned about the summer and I was glad she brought it up because I wondered what was available - was the school open, were there classes, what goes on, I asked.  She was VERY cagey about it, she said there could be 'availability to the classrooms' and that there were some 'camp' options.  I said, after going round and round for a while, well, we would be interested in whatever we could get for Anthony.  I said that since what he's had for years is 40 hours a week, for most of the year, that we have found that Anthony does better when he is busy and occupied and she said well, everyone wishes they could keep their kids busy all summer.  I said actually, while I'm sure that's true, I'm not talking about everyone.  I'm not even talking about all my kids, I said, I am just talking about ANTHONY and I think we are in another situation where you are acting like he is a typical nine year old and I am concerned that you don't understand Special Education or autism.  So we said we'd revisit that in the spring and I said fine.  I mean, really, what the hell?  She is the worst kind of worst, this woman, she is just holding all the cards and barely giving us a peek and then when we want to look at the whole card, or God forbid her whole hand, she snatches them all back and accuses us of cheating.  Like I am somehow rooking the system by asking for Anthony to be educated, and to get whatever else is necessary for him to BE educated.  I wanted to smack her the whole time.

But his teacher said that she wants to come to Little Star to observe him, and she only seems to want to make Anthony, the individual Anthony succeed.  She is really terrific and I am hopeful, despite everything, that we will be okay but man.  It is beyond exhausting and depressing to go into these meetings.  My least favorite feeling is that I am being misunderstood and that's all that happens with these people.  It's frustrating but you know, I  am bullish  for the future.  I think that as long as we stay on it, Anthony can get an education, and I think he has come this far in like 10 weeks or whatever, who knows what else can happen for him?

Sunday, October 05, 2014

Fall Break

Anthony is on fall break starting tomorrow, but thank God, he is going to Little Star every day.  On Friday we took all four kids up to Little Star for a parents' night out and we went in and Anthony raced ahead and flung himself to the floor, he was so happy to be there.  I feel excited for him, that he will be at a place all week that he likes so much.

Things are going okay, they are not great and we had a long weekend because his respite care girlfriend was off on Saturday, she was throwing a party for her daughter, who was turning two.  But they are going okay, I mean, they are sometimes okay and sometimes hard but that is true with the girls, too.  Felicity herself could drive a person to DRINK most days, and that honey badger is on break, too.

But as long as I stay in the present and just worry about today today and that's it, I'm okay.  I can't worry about the future, even though it is tempting.  Maria said today "when are we getting Anthony's dog?" and I said I am praying for it every day.  I hope it all works out, I know it will.  I told Anthony tonight when I went up because he was crying, I said, listen - soon we will have a dog and we will send you both to bed and he will hug you whenever you want and then our lives will change.  He looked skeptical and I feel skeptical but what can you do?  We are keeping on keeping on, wish us luck!