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!


Monday, September 22, 2014

Weekend

Anthony went to the Answers for Autism walk on Saturday, with Christina.  His school has always participated in this but it's a long event and we can never go because I can't count on Felicity to want to do anything for that long, so it was great that he got to go this year with Christina.  He had a wonderful time, she sent pictures of him rock climbing:

He really liked it, she said he went up halfway two times, which seems great to me.  Yesterday he was pretty good in church, although he got sick of it by the end.  But one great thing that happened was that this woman I know came over and told me that she is his OT at his public school!  She said she sees him every Friday and that she thinks he is doing just wonderfully.  It made me so happy to think that someone that knows us is there, she also said how much she loved his teacher.  So good things are happening with Anthony, and I want to record those here, too, ha!


Thursday, September 18, 2014

Insult/Injury

So today we learned that NOW Anthem isn't going to pay for Anthony's ABA therapist to go to school with him - it has to take place on ABA ground or something.  It's so dumb, we got a letter yesterday saying they were cutting his hours from 40 to 20 and we laughed, we were like, um, WE KNOW!  But I guess that is what they meant.

So now we have to decide whether or not - ugh, whether or not what.  I guess if we send him to school in the morning and Little Star for the afternoon?  But does that mean we drop him at school and then I go get him and take him to Little Star and then get the girls and then go get him?  Because that is a hell of a lot of driving.  Or do we take him to Little Star and then go get him and take him to school?  I don't know.

I don't know but I guess I'm going to find out.  I assume the next step is that they'll just stop paying for the 20 hours and then we'll be completely dropped.  Onward and upward!  Except not upward, ha ha boo hoo.


Wednesday, September 17, 2014

Epilepsy

Epilepsy is worse than autism, if I am giving these conditions grades.  Here's what I wrote about our weekend on Facebook:

Did I say Anthony spent the night in the hospital Saturday? He was in the middle of a seizure when Mike went to check on him, so I raced home from work so he could take him to the ER. Mike gave him the stuff to break the seizure, but LORD that creates a real Weekend at Bernie's situation getting him into the car. Anyway, the boys spent the night in the hospital as Anthony had another seizure once they got there, and I spent the night with Felicity, who had pneumonia and an ear infection, both undiagnosed until Sunday. In other news, Maria and Veronica are a-okay. **knocks wood**
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Poor Mike!  He had the worst of it, I think.  I think about him going up and checking on Anthony, expecting to pull up his blanket and go off to bed himself, and then he finds him, in the middle of a seizure and covered in vomit, ugh.  I mean, I'm sure it's hard on Anthony but I think he is unconscious for most of it.  I would like to be unconscious for LOTS of my life, ha ha boo hoo.  

We adjusted his medication again and now we are just ... waiting?  I guess?  Then he'll have another seizure and depending on what is going on when it happens, we will take him to the hospital or call an ambulance or some thing.  We have to take him to the hospital because it's so awful when it's happening, they last WAY longer than five minutes, and the last two times he has had a seizure and we've taken him to the ER, he's had another one there.  This begs the question, if he has a seizure at home and we give him the valium to break the seizure and then he has another seizure, do we ... give him more valium?  At the ER they give him Ativan on the second one and we don't have that although I wish we did, ha ha boo hoo.because I would take some!  Lots!  

He is really acting crazy lately.  He gets home from school off the bus at 3:50 and - like today, he comes in and I try to have toast ready for him, but he ate eight pieces of toast, dragged a chair over to the cabinet to try and eat the butter in the dish (he didn't succeed today, but he did yesterday), he yells and screams in Felicity's face while she is trying to gain a little solitude in her Princess tent, it's crazy time in Crazy Town.  Maria and Veronica are all up in my grill, can they go to the neighbors, WHY can't they go to the neighbors, WHY do they have to wear shoes, Veronica can only find one shoe, on and on  and on and ON, and it's only one hour until Mike gets home and it feels like ten, seriously.  

Mike and I are both sick with colds, probably from exhaustion because we were both awake most of the night Friday and Saturday.  Then last night we went to bed and I woke up in the night, 2:45, because the stupid light turned on.  We have one of those lamps that you just touch it and it turns on and I guess maybe my brother walked by and the vibration made the light turn on?  Good Lord.  It's almost too much.  When, I wonder, will it be too much?  How will I know?  When I wake up in the loony bin?  

Also, he gets a Communication Sheet sent home every day and it has smiley faces/unsmiling faces for morning, afternoon, and ... some other part of the day.  Today nothing was circled and it said "Anthony climbed on tables all afternoon".  Um, is that communication?  I hate that he is at that damned school and just because it's not that bad doesn't mean it's good.  And he has fall break in like three weeks, one week off, and I'm trying to get him to call full day at his old place but it's First Come/First Served and I may have asked too late so maybe he won't be able to go?  I am dreading it, believe me.  

I wish I could have some good news.  Maybe next time!  

Friday, September 12, 2014

Another Week

This past Saturday, which feels like about nineteen years ago, Anthony slept in super late.  We had to wake him up when Christina got here and that's at 10:00!  I think we just think that if he is tired and needs to sleep, he should, so we try and keep everyone quiet and don't bug him.  But then on Sunday night, he was awake until 2:00 a.m., then around midnight every night until last night, when mercifully, he fell asleep early, like before 10:00.

He had such a rough week.  He was pretty good after school/before Mike gets home, and he was pretty good at OT, but he had some rough times at school and he was really terrible to us at night.  He is doing this thing where he pulls his pull up away when he pees at night and so he gets really wet and we have to change him into new pajamas and a new pull up and then while we are doing that, he kicks and pulls and laughs crazily.  It's awful.  It's so bad that once I do it, change him and I'm all sweaty and exhausted and doubting EVERYTHING, that I can't sleep forever so we have both been really tired this week.  I went to sleep early last night too so I think today is going to be a better day for both of us.

He took off his clothes this week in PE, at school, and he has been taking off his bathing suit at swimming.  He used to take off his clothes a LOT, but he had stopped and now he's starting again and I'm super afraid that it's because he is regressing.  Daily, he is pooping NOT in the potty - well, that's not true.  I think one day he did actually go on the toilet but every other day this week it's gone pretty badly, involving much cleanup and gnashing of teeth.

I hate that every day ends so badly.  It's bad with him and then it's bad with the girls too, Felicity isn't tired because she's had a nap at preschool and so she terrorizes the girls, everyone is crying, Anthony is SCREAMING.  He rushes at his door and SCREAMS, loudly and urgently, and I think boy this is a real loony bin.  And it's like 8:00 and we still have to have dinner and clean the house and get ready for the next day.  We watch one show and it's time for bed and I find it very difficult to go to sleep with Anthony SCREAMING in the next room, ay yi yi, it's too much!

So tomorrow we are going to try to get him up at no later than 8:00 and see if he doesn't sleep better next week.  Back to the drawing board we go, I guess.  Things are going great with Christina, to look on the sunny side, he is going to the company picnic of his respite care place tomorrow, and I think things are going okay at school, despite some problems.  His teacher seems to really love him and I think he is getting used to it.  Here's a picture!


Thursday, September 04, 2014

Pencils

Yesterday, I was joking/complaining on Facebook that Maria's teacher wanted her math homework done in pencil, but I don't have any pencils.  I used to have pencils, but Felicity and Anthony both chew on them, she and Veronica write on the walls with them, they have sharp ends which could poke out someone's eye, etc.  I literally have no pens or pencils just hanging around here, the Sharpies are up on the top shelf and I usually put pens in the spice drawer so no one can readily get to them.

So I said that I wished that Maria's teacher had sent home one of the TWENTY FOUR pencils that I sent in in my supply list.  Maria goes to Catholic school, we pay tuition AND donate regularly to our church, we pay an activity fee, AND I fulfilled supply lists for both Maria and Veronica, without complaint.  Yes, I think 24 pencils is a lot of pencils, and 20 glue sticks is more than Veronica could ever use in one year, but I just did it, just got what I was supposed to.

Then when I went to the roundup and back to school night, I signed up to volunteer - in the library, to do out of classroom work for Maria's teacher, and to conduct Accelerated Reader tests for Veronica's class.  I want to be involved and to assist their teachers, I want us all to be involved in our Catholic School Experience, because I think it's right for us and also because I don't get to have that opportunity with Anthony.  I am TRYING to CARPE the DIEM.

But.  I complained on Facebook about Maria's teacher asking us to have her complete the Math homework in pencil, but not coming across with one of the pencils that we sent in.  It was just a funny thing that Mike and I talked about, and I said it on Facebook, in my Facebook status that only my friends and family see.  People commented and said just buy a pencil, and I said I can!  I would just rather not keep them in my house.  I know that makes me a weirdo.  I KNOW.

The last time I posted on Anthony's blog, I said how happy and grateful I was that he hadn't had any accidents at school.  Yesterday he came off the bus and when I looked at his backpack, there was a note that said that he had an accident in school and we had to send in new backup underwear.  I looked further and found said dirty underwear.  I was telling Mike yesterday, in the big picture, I know that we are right where we are supposed to be.  I know that all of our kids are perfect for us and we are perfect for them.  But on a day to day basis, we are a bunch of weirdos and I know it.  We can't just go to a baseball game, can't just go to our church's big fundraiser this weekend.  I can't just send my oldest child to the school I want, I can't even get his insurance company to do the right thing and pay for him to get the therapy that he needs!  I worry every minute of the day about him and not just the now, but the future.  When he pulls at me, or kicks me, I worry that he is going to some day really hurt me or one of the girls.  It is a constant, constant fear of mine.  I have never been so worried.

So I say this one thing on Facebook about Maria's teacher and how I wish she had sent a pencil home and one of my Facebook friends, who is a teacher, lit into me about it.  She said, sarcastically, yes, Joanne, we all sit around and plot and plan how to make you miserable.  She said, sarcastically again, we don't spend any time planning academics, we just want you to be unhappy.  She asked may I ask you a question?  Did you ask the teacher about this and tell her your situation and see if she could work with you on it?  Honest to God, I felt like I was on Candid Camera.  She said that she didn't appreciate me judging this teacher on Facebook, that she wouldn't appreciate it if she was the teacher.

Holy moly, I still can't believe it.  I mean, I guess I can believe that someone is so constantly on guard about their profession that they are kind of a watchdog about it.  I know that my sister is aware of librarian stuff in the media and on television, and Lord knows I am hyper aware of stay at home mom stuff, or even waitress things!  What I can't get over is that no one will cut me any slack.  I think of hundreds of things a day that I want to say to people, things I disagree with, every single day!  But I don't say them - I think about things that I've read recently about being kind, because you don't know what someone is going through.  I can't get over the things that people say about mothers, or special needs mothers, or servers, or women, or people, and I don't take it personally and attack them!

So I just - if you're tempted to correct me, or make an example of me, I wish you wouldn't.  I tell the kids all the time, I am trying all the time.  I am trying as hard as I can every second of every day.  So I am just asking to cut me some slack, to give me a break, to assume that maybe I am having a bad day and here's a safe bet - if you see me at any point during Anthony's waking hours, I have probably just cleaned up or am about to clean up some poop.  Poop off my NINE year old, poop that I have been cleaning and wiping up and washing out for NINE YEARS.  So cut me a break, people!