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.


Sunday, June 22, 2014

Sometimes

Sometimes I get really mad at Anthony. Not at our situation, but actually at him. We have been writing letters and calling people and trying to get this appeal done and still, still he goes out and poops in the yard. I mean really.

Sunday, June 15, 2014

Fathers Day

I asked the kids today what their favorite thing about Mike was and Felicity said, he goes to work.  She always says that, though, so she might just be babbling.  Veronica said I forget and Maria said he is so funny and tells good jokes.  I asked Anthony but he didn't answer but I bet there are so many things that are Anthony's favorite, he couldn't even say them all.

This morning, I wanted to make Fathers Day easy on Mike, he made me breakfast in bed on Mothers' Day and I went to get a pedicure and everything!  So when Veronica came in at 7:11 or whatever the hell early hour it was, I got up with her.  We came downstairs and soon Felicity woke up, and we went to Dunkin Donuts where I got Mike a maple frosted donut and iced coffee.  I was going to make eggs but his eggs are so much better than mine and I can never do anything with Veronica and Felicity on my leg, so I went the donut route.  Anyway, when I got home Mike went up to change clothes and get ready for church and then I heard the bath running and it took me a minute but I was like, um, the only reason Mike would be running the bath in the morning is if Anthony had a poop incident and ugh hoo boy it was a mess.  Mike had our friends over last night to watch the Italy v. England World Cup game and ordered pizza and he said Anthony ate a ton of it and I guess it made him a little sick.  Anyways, the point is, there he is, running a bath for Anthony and taking care of biz as usual.  So probably one of Anthony's favorite things about Mike is his willingness to just roll up his sleeves and take care of any mess he makes.  There are a ton of them, Anthony spills water on the floor just to see what will happen (what happens is it makes a giants mess), he takes tons of pretzels and eats one out of every 20 and the rest have to be cleaned up.  I couldn't count how much stuff he does for Anthony.

Another favorite thing about Mike, I bet, is that he is endlessly patient and it's necessary, because of Anthony's thing lately where he is grabbing or kicking us.  Mike is always, always the one to bathe and dress Anthony so basically every night lately Anthony grabs at or kicks Mike, takes his glasses, laughs maniacally in his face and although it drives us both nuts, Mike just gets the job done.

Another thing Anthony loves about Mike, I'm sure, is that he takes him to swimming every week.  He drives him there and walks him in and then when he is done, he takes him to the locker room and dries him off and gets him dressed and brings him home, mostly getting grabbed or kicked and then comes home and does it ALL OVER AGAIN for the bath!

Mike fights for Anthony, we are both fighting the stupid insurance company but Mike is the one going to the appointments with Social Security, faxing the stuff to Medicaid, writing emails which are better written than the ones that I could write.  Mike and I both have gifts when it comes to writing but my writing is more of the boo hoo hoo variety and Mike's is more of the heretofore of the previous engagement law law law very sincerely yours variety.  His writing talent serves us better here lately than mine does, as you can imagine.

Anthony probably doesn't appreciate this about Mike, but I do - he does everything he does for Anthony and for all of us, and he also, as Felicity pointed out, 'goes to work' every damned day so that we can have somewhere to live, cars to drive, food to eat, everything!  Not only does he go to work every day, but he does it all the while with me complaining about him going to work and leaving me alone with these lunatics, ha!  He is really patient, he is so kind and nice - not just to Anthony or with Anthony but with the three girls and also, probably mostly, with me.  He has had reasons, over the last ten years, I'm sure, to lose his temper with me and to get mad but he never does.  He is the best dad anyone could have and he is the best husband I have ever had (ha ha but seriously), we are all so, so lucky.


Tuesday, May 27, 2014

Medicaid and the Family Support Services Waiver in Indiana

Here's what we've done since we found out that we were off the waiting list for the Family Support Services Wavier (FSSW), sometime last fall:


  • received the letter saying that after five years, we were off the waiting list and we would be receiving the FSSW.  
  • looked into what that meant, which was challenging because nobody seemed to know.  Would we get money?  Money in vouchers?  Nothing?  A promise of a new day?  Nobody knows.  We scheduled a meeting for December something and we had to bring Anthony.  
  • We went to the meeting and at that meeting, a nice woman asked us if Anthony could say, go into a drugstore and give the clerk a $5 for a candy bar and know how much change to get.  Mike told her that if Anthony wanted a candy bar, and happened to be in a drugstore, he would just grab that thing and chew right through the wrapper if he wanted it and no money would change hands.  What the hell, I remember thinking, can she not see him?  At the end of the meeting, I asked what kind of things the voucher paid for.  I said that we were concerned about Anthony's security and I wondered if the voucher would cover things like window guards for Anthony and she said somewhat huffily that no, they weren't going to pay for us to decorate our house.  Okay then.  
  • We had to pick a management company, and on the advice of a friend of mine who was a little bit ahead of us in the process, chose Care Star of Indiana.  We had to set up another meeting, with Anthony, at our house and we did.  We kept Anthony home from Little Star and the case manager sat in the driveway for like fifteen minutes, on the phone, until I finally went out if the meeting was still going to happen.  She said she was sorry, she was on an emergency call blah blah blah excuse excuse.  For the Good of the Meeting, I said no problemo and we pressed on.  She said she would send us a pick list for a respite company, since it seemed like $16,000 of respite was all we could get - the waiver doesn't cover therapeutic swimming, occupational therapy, or transportation like we were hoping it would.  We also hoped that we could maybe try hippotherapy or something else which we couldn't afford but it became clear after our meeting that we should just take the respite and go from there.  You can get a lot of respite or CHIO (Community Based Habilitation - Individual - basically going out to places with a caregiver, the pool, etc.) if you use the whole waiver for it, so we figured it would work out okay.  Lots of times we feel like we can't take Anthony places with everyone, because we can't focus 100% of our attention on him, on Veronica. and Felicity, and they all need it.  Bad math, Mike calls it, and he's right.  Of course we are hoping old Veronica will grow up soon and behave better when we're out but so far, she can't really be trusted to not run out into the road or whatever.  Anyway, we were hopeful (MISTAKE).
  • I picked a respite care company and spoke immediately to the Director of Operations, I chose them from the pick list with our Medicaid Case Manager, then .the DoO came out to the house and did an intake, meaning she got our info and said that as soon as she got the go ahead from Care Star, she'd get someone and we'd meet them and go from there.  
  • Many weeks went by and finally, Mike started trying to contact our case manager at Care Star, he called her one week and then called her the next week.  Then I emailed the company and then I called her and then finally she called us back.  In the meantime, I emailed the DoO for the respite care company and asked her what our status was and she said she was waiting for the Care Star lady to send her something.  I asked the Care Star lady about it and she said oh yes, hadn't she sent that?  We had to apply for medicaid!  So we did, we called last Thursday and they called back and - this was funny - the lady called me and said that when we filled out the medicaid application, we hadn't checked that Anthony was disabled and he pretty much had to be disabled to receive Medicaid.  I said I'm sure what happened was that we don't think of Anthony as being *disabled* but that I guessed we should rearrange our thinking for the purposes of our application and the lady said YES we should, ha ha boo hoo.  Anyway, they scheduled an interview this morning at 9:00.  
  • Since I had Veronica and Felicity here and we were starting some home therapy for Anthony at 9:00 this morning, I asked Mike if he would do the interview and he said sure so he talked to the guy.  There was some major confusion because, as Mike said, it's still 1954 at the Medicaid office and they didn't understand why my name was different than all of theirs.  The dude asked Mike what was my name on Anthony's birth certificate and Mike said it was the same as it is now, sheesh.  The guy had to call back because he checked the FSSA database and Anthony's waiver letter wasn't in there.  Apparently our case manager at Care Star was supposed to do that, too, but guess what?  SHE DIDN'T!  So I called her and the guy called back this afternoon and asked the same questions he asked Mike this morning.  He asked what Anthony's doctor's name was, what his address was and his phone number, and THEN he looked him up in the database and there he was!  He couldn't have looked that up first?  He asked what grade Anthony was in and I said, um, he's not really.  At the same time I was answering him I was checking my email and I got the info about Maria's kindergarten graduation and ugh I could do without stupid questions, buddy.  He asked if Anthony could dress and bathe himself and I said, thinking it was best to keep it short, "no" and he said, and you said he has no physical limitations?  What I don't like about these people is that they make it sound like he is the WORST CASE they have ever heard of!  Would you say he has severe autism, he asked me.  I said yes, and he's non verbal too AND low functioning, put that down, they love to see that.  I mean really.  
  • SO now the guy is going to mail me (email, I asked? NO, he replied, reminding me that it really is 1954 up in there, the USPS!) a privacy letter I'm to send to Anthony's doctor, and I have to send a copy of his birth certificate (with my big red A last name on it) and I have to find out why the dimwit case manager hasn't filed the waiver letter, AND we have to apply for Social Security Disability AND SSI and then we can really get going on it which of course means thirty days more of waiting.  
It's so, so disheartening.  I also talked to the Department of Insurance today and Mike talked to our state rep's aide and she said that the guy that she called said that he is really backed up because so many people are calling about this problem.  Really?  Parents are calling because their kids' insurance is being taken away?  HOW SHOCKING!

Monday, April 14, 2014

ABCs of Autism - R

R is for Regression, I guess.  It's hard to say if Anthony is regressing because maybe it's regression and maybe things just suck right now.  He is definitely having a regression with toilet training.  Yesterday he was outside several times and just - went in his pants, not to put too fine a point on it.  Maybe it's because he is just having a high old time outside and doesn't want to come in, maybe he thinks the heck with it, I have been indoors for six straight months, I'm not going in now!  But if that's what is happening, it's still a regression of sorts because in the past, I think he would know to come in.

He is also having tantrums like he used to, meltdowns, whatever we want to call them, and he is grabbing the heck out of us.  Mike says, and I agree, that we have to just think about what's happening right now and not get weighed down with the future.  If he gets bigger and still grabs me like this, I think, he could really hurt me! But Mike says there is no point in thinking about the future because maybe he'll stop doing it, and he is right.

My cousin Agnes posted this great thing on Facebook the other day.  Here it is:

In essay titled "The trick of Life" -NY Times 4/6, Akhil Sharma wrote while going thru a breakdown: "I began to pray for the people passing by. I prayed for the nanny pushing a stroller. I prayed for the young woman jogging by in spandex....I prayed that each of them got the same things I wanted for myself: that they have good health, peace of mind, financial security. By focusing on others and their needs, my own problems seemed less unique and somehow, less pressing..." 

I thought it was just brilliant, it really spoke to me, and I told her that.  I am always praying for myself, nearly constantly, in the middle of all my breakdowns, and maybe that's not the way to do it!  Now as I lay on the floor, where I've dropped so that Anthony doesn't tear my shirt as he pulls me, I don't pray for myself, like I normally would.  Normally, I'd say please get me out of this hellhole or something, ha!  Right now, Felicity is screaming and yelling at me, for example, because she does or does not want me to put a backpack on her shoulders, and instead of feeling sorry for myself and praying for myself, I am praying that she will stop being such a jerk, ha!

Seriously, I am just filling my time formerly spent praying for myself and praying for Anthony.  Praying for the people around us, who might want to give us a dirty look in church or even just stare too long.  I'm praying for the parents who are so hell bent on finding out WHY their kid got autism that they get an answer, or that they give up and just focus on making their lives better.  I pray for Mike and for the other kids.  It really does make me feel more a part of the world, less lonely.  Anyway, it turns out it was foolhardy for me to think that I could ever sit for two seconds of my life and do something but Anthony is having a regression and that starts with R and now I am finished with R the end.