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.

Thursday, July 31, 2014

Final Appeal

In order to file our final appeal with Anthem, although I guess it wasn't really with Anthem since it was an external appeal, although it kind of was with Anthem, since we had to send it to them so they could send it to the external appeal, we had to write a letter about Anthony's life.  When you write the letter, you are supposed to keep in mind that although you may normally try to look to the positive about your child, you should be open and brutally honest about what life is like with your autistic child.

So I wrote a letter.  I wrote it and Mike edited it, because we think that I am better at emotive writing (vomit, ha!) and Mike is better and legal writing, at facts, etc.  Here is the letter:

Anthony Beck is our firstborn son.  He is nine years old.  He is a happy and smart person, he loves to run and jump and watch The Wiggles.  He loves to be tickled and roughhoused, he loves music and dancing.  He is the oldest of four children, our only boy, and he is the only one with autism.  He had a difficult babyhood, he has always had trouble sleeping, but he is now a very nice nine year old and everyone who comes in contact with him loves him.  

Our hopes and dreams for Anthony are the same as our hopes and dreams for our daughters.  We want him to use the gifts that he's been given to be the best person he can be.  We want him to learn how to live and thrive in the world.  We are willing to do anything to help him achieve his dreams.  

Every day, we wake Anthony up and get him dressed.  If the pull-up that he is slept in is dirty, we clean him up.  Sometimes this requires putting him in the bathtub.  We get Anthony dressed and get him downstairs.  He frequently does not want to get dressed and responds by passive resistance or by kicking us or pulling at our clothes.  On a good day, Anthony will walk downstairs himself, but sometimes I have to carry him on my shoulders.  If Anthony doesn't want to go somewhere, he drops to the floor and I have to pick him up.  Sometimes Anthony grabs me by the shirt and pulls me to the ground.  He requires minimal assistance going to the bathroom, but sometimes he has accidents and sometimes when he has accidents, those accidents require him to be cleaned up, or we have to clean our house or our yard.  We try to get Anthony out once or twice a day on the weekends, but it is challenging because Anthony will if given the opportunity bolt away from us in a store, parking lot, or park.  He is fast and getting faster and catching him is becoming more of a chore as he sometimes refuses to stop when you call out to him.  He requires 100% of either my husband's or my attention.

Anthony's room has barely anything in it; because we are concerned he will climb on or break anything that it is there.  His dresser is in the hallway because he had tipped it over several times in his room and we were afraid it would fall on him.  Anthony tore both the sliding doors off his closet, and we did not attempt to re-hang those because they are heavy and again we were afraid they would fall on him.  We have a hook and eye lock on his door, which we lock every night because otherwise Anthony would wander the house at night exposing himself to all kinds of dangers which he does not even recognize let alone know how to avoid.  He has only a mattress and not a box spring or frame, because if he has anything to make him taller, he will tear at the window, or the ceiling fan, both of which he has broken in the last year.  We have put plexiglass over his windows so he can't get to the glass panes (he put his fist through one of the panes last year), and we have removed his ceiling fan from his room because he was pulling on the blades, and the whole thing was at risk of being pulled from the ceiling.  We can't leave any of the doors in our house open or unlocked.  My husband or I have to check the door every time someone goes in or out to make sure that the door is locked, or Anthony will try it and run out of the door and down the street.  He shows no concept of knowing that the street is dangerous.  Recently, he ran down the street and straight into a neighbor's home.  We never go anywhere with all of our kids, except to church every week and sometimes if it is too noisy or something else bothers Anthony, he will start yelling or grabbing my husband and I and pulling at us, and we all have to leave.  

At this point in Anthony's life, we do not see a way in which he could thrive in a school setting, because his medical needs are too great.  He is incapable of sitting still or being quiet for long periods of time.  I have read with great concern recent news stories which talk about special education teachers taping mittens to children's hands, belting them in chairs, or turning those chairs to lie on the floor, because I could see this happening to Anthony.  It is my greatest fear that something will happen to him because he can get so frustrated and he won't be able to tell us about it.  Because of his inability to sit still, not run away or understand or follow the most basic of rules, Anthony cannot attend religious education at our church, he can't go to the pool with us in the summer, he can't go to bounce house or trampoline places, which he really enjoys, because he can't wait in line, or take turns.  It's not a matter of him not wanting to behave. He literally can't.  

Anthony has been making slow and steady progress with his iPad and communication device but he still can't say his name if you ask him what it is.  He could not cry for help if he needs it. He could not tell us if someone was hurting him.  My husband and I are in tune enough with Anthony that we can tell if he needs something urgently when he is up in his room, but he cannot make his wants or needs clear to someone with whom he is not really familiar.  

Anthony has taken swim lessons for several years, through an adaptive program at our local YMCA.  He is learning how to swim because we are very concerned about the high incidence of water accidents for kids with autism.  Every single teacher he has had has tried to show Anthony how to swim by making the swimming motions and expecting Anthony to imitate them, but that is not how Anthony learns.  It simply does not compute for him to imitate something in the way it does for other kids, since Anthony lacks joint attention.  

At this point in Anthony's life, my husband and I know that a public school setting is not the place for Anthony.  We are deeply concerned that Anthony will regress and lose all the skills that he has acquired at Little Star Center.  As an example of our concern about regression, Anthony had been doing very well with toilet training for over a year, but his toileting regressed in a major way last winter when he was out of Little Star for two weeks for holiday break and one week for weather.  In three weeks, we lost months and months of work on toilet training and we are still working for him to get back to where he was last December.  Because of our experience with Anthony’s regression with toilet training over three weeks, our grave concern is that if Anthony goes to a school environment where he cannot get the therapy he needs, he will regress and lose years of progress.  Anthony is prescribed 40 hours a week of ABA therapy because that is what he needs - in fact, he probably needs more than that, and my husband and I do what we can at home with him on the weekends and off hours.  By Sunday night, we are both exhausted from trying to keep Anthony and our three daughters safe and happy all weekend.  Sometimes all we can hope for is that he is safe.  Anthony can be very destructive, he loves to splash in water and see water splashing, so he will often fill a cup with water and throw it on the floor.  He will spit water on the floor.  He also likes to open our freezer and throw all the ice cubes on the floor.  Sometimes if Anthony is upset, he will grab one of his sisters and pull at them.  This usually results in them crying, and the noise making Anthony even more upset.

Although our hopes and dreams for Anthony include his attending a regular school, and learning to read and write so that he can communicate and expand his world, we know that if he were to go to a school at this point, it would do nothing but harm him.  He has an urgent and medical need for the ABA therapy which he has been prescribed.  

Of course we lost the appeal. A "medical professional" goes over it and decides whether or not Anthem was right in their decision to cut Anthony's hours so that he could take advantage of his free, public education. I am really mad, heartbroken even, but not because owe lost the appeal. We both knew that there was no way that we could win - the system is set up for us to lose. It would be like banging your head against the wall and being SHOCKED and SURPRISED that it hurts, oh look, it's bleeding! Wow! How did that happen? We refused to consider the possibility that the scumbags at Anthem would suddenly grow a heart and see Anthony as a person and not just a number on a large spreadsheet.

But what I am really mad about is that they made us write this letter. It seems so mean, so cruel - write this letter, pour your heart out and say all this terrible stuff about how miserable your son makes your family life and then guess what you'll get? The very services that are helping him will be taken away, so you can have MORE time to be miserable. I don't understand why the extra punch in the gut. I wonder if it ever works - if anyone ever writes such a MOVING and COMPELLING letter that it ever works. I don't think so, and it's not just because I think I wrote such a good letter, although I do think it's good and true. I think it's because it was never going to work, this plan to take his hours away has been in place for years. It's unbelievable to me, how unfair it is and I am miserable about it.

BUT, starting a week from Monday, Anthony is going to start school. He's going to - ride a bus? I guess? And then he'll be in a classroom for autistic kids and there will be one teacher for every five kids or something and ugh I just do not see it going well. Little Star is being really wonderful, beyond wonderful, and they are going to send someone there to ease the transition and then I guess we will decide how we will use the 20 hours a week that Anthem is still going to cover, although God knows how long that will be. We are planning on suing Anthem but we are taking a week or two off from all this. I have never wanted to quit something so badly in my life as I want to quit this job, and I've never had a job that's more important to NOT quit, which I think is some B.S.

Sunday, July 06, 2014

Sunday

So today we were in church, I was worried about going.  Mike and I went out last night until like 1:00 (!) and we were tired and grumpy and Anthony has had a pretty crappy and I do mean crappy long weekend.  But it went well, so much better than I thought it would.  Felicity won the Worst Behaved in Church prize, because she wanted to walk up the aisle by herself, she was very bad walking up to communion and just in general she is noisy/bad, but even she wasn't too bad.

This bad thing happened, though.  At one point Felicity went back to the old confessionals, and I walked to the back of the church to keep an eye on her.  I want to see her but I don't want her to see me, because if she sees me she behaves worse, usually.  So I was skulking in the back and this woman I know from Veronica's preschool class walked in.  Her son is Veronica's age, and she has a little, maybe two year old girl and she is super pregnant.  She is also super cute, which I admire, so I was looking at her and admiring her long skirt.  She walked in the aisle two rows behind Anthony and Mike, then her two kids, and then her husband.  I saw him look at Anthony and then gesture to his wife to move into the next section.  She said, silently, why?, and he kind of shook his head toward my boys.  She just shook him off and sat down - well, she didn't sit because we were at a standing point but she made it clear that they were staying there and this grown-ass man put his hands on his hips, like in frustration, like *MARIA* does when she is angry.

Ooh I was steamed!  You know, you are not perfect!, I wanted to yell at him.  Your kids can be jerks just like MY kids can be.  You'll still be able to HEAR him if you move to the next row, you scumbag, so I guess it's maybe just that you don't want to see him.  That's so mean, isn't it?  I'm not crazy, right?  I mean, even if you don't want to sit where the boy with autism can be in your line of vision, maybe it would be smarter and kinder to talk about that shit in the car where I don't have to see you.  So anyway, I went back to my row and I turned around and gave that guy a look that I hope said I Saw You, You Creep and I will Thank You Not to Look at my Sweet Son Like That Ever Again.  Also I hope it said You Look Just Like a Petulant Little Kindergarten Girl When You Put Your Hands on Your Hips Like That.  I have a degree in theater so I am really hoping it all came across, ha!

THEN Anthony was getting a little noisy right before communion so Mike took him outside for a breath of fresh air, not a drop of which was available in that hot box of a church we attend.  Felicity ran up the aisle at that point so I carried her out until she wound down.  Mike and Anthony went in and I was standing right behind the last pew, waiting for Felicity to come in, when the guy's Veronica-aged son started flapping his hands like Anthony was doing!  I mean, he was TWO rows behind them!  I caught the kid's eye and just sort of shook my head at him and he looked SHOCKED and HORRIFIED and then HE cried and his mom comforted him.  I mean, I know I am a bitch but I wanted to flick that kid in the forehead - you're crying?  You get comfort because you were making fun of my son and got caught?  I mean, I am a bitch because he is just a little kid, and it's something my kids would totally do.  Yesterday we were at Lowes and I was trying to find someone to help me, I was with Veronica and Maria, and we saw this Lowes guy on the phone.  I said well, I don't want to bother him, let's find someone else and Veronica said, hey what happened to his arm?  His arm was in fact NOT in his sleeve, but I said, Veronica.  You can't talk about people like that.  So I'm not unaware that little kids can be obnoxious but of course, Veronica didn't pull her arm up through her sleeve and wave it around, she wasn't making FUN of him in the way that this kid was making fun of Anthony.

I didn't turn around to shake their hand when it was time, I was mostly busy shaking the hands of the people in front of me but also I just can't.  It's hard for me to be nice to people I don't like when all they've done is EXIST to piss me off, let alone someone who is actively mean to us.  I don't know - I just feel like - it's CHURCH, aren't we all there for the same reasons?  Is there nowhere where we are safe from judgment and cruelty?  I guess not and THAT is depressing as hell.


Monday, June 30, 2014

Update

We wrote a letter for our final update, they have 45 days to respond.  It's so depressing - this is supposed to be an external appeal, but we have to send it to Anthem and then THEY send it to the external appeal people.  Does that seem sketchy to anyone else?  Whatever, I'm sure we'll lose but we have to try.  If we do lose we are going to sue Anthem, and I'm guessing we'll lose that too but at least it will give us a chance.  The Department of Insurance here in Indiana wrote to us and said that they were sorry but they had done all they could do, which as far as I can tell, was writing to Anthem and saying hey um, Joanne says you have done her son wrong and then Anthem wrote back and said, basically, nuh-uh, and they said oh, sorry, my bad.  Anthem owns the whole state, as far as I can tell, so we are never going to get anything done with just our word, or with the autism mandate.

Anyway.  We are moving along on the medicaid piece, hopefully the respite care company place is identifying staff, to use their words, and we can get someone in place.   We haven't heard anything about the dog but I am still praying that it's soon.  I know that Anthony's dog is out there but that is literally all I know about it.  I mean, I believe that this is going to be a great thing for Anthony, that there is a dog who is a good match for Anthony but I just wish I knew when.  WHEN LORD, WHEN?

We are at a pretty low point right now, with Anthony.  I am just hoping, as usual, that it is the darkness before the dawn and that things will get better soon.  I love him so much and I just have to hope that's enough.