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.

Monday, April 07, 2014

April is Autism Awareness Month

April is Autism Awareness Month and people are making me mad about it.  I feel like most people are great about it, truly wanting to be more aware of how they can help people with autism, families with Autism, etc.  My cousin Bridget posted a cute picture of her and her son Liam wearing blue for World Autism Day.  I have friends who are moms of kids with autism who post facts about autism, Anthony's school is doing a blog post a day ( I wrote one ) about it, these are all good things.  Not so good things include the ongoing love for Autism Speaks, a corporation that I really think is more damaging than good for people with autism, and just people in general.  Also, it seems like Autism Awareness Month sometimes turns into Vaccines Awareness Month and it drives me crazy.

Here's what might happen - a Facebook friend of mine might post something about vaccines.  Sometimes, the article has a disgusting picture with it, I won't post an example, because it's DISGUSTING, but like a child covered in welts and bumps, with a headline about how mumps is making a comeback.  It's so patronizing and insulting because I don't think that's what mumps looks like and also?, don't try and scare me with pictures!  I can't unsee those things!  Anyway, so the friend posts it and then someone else will comment that the government can't be trusted, or they don't want their child getting AUTISM and this is what really makes me mad.  Because while I agree that the government can't be trusted, I really feel like my pediatrician can be trusted, and if I didn't feel like he could be, then I think I should get a new pediatrician!  But what kills me is that there are people who compare having mumps or measles or whooping cough with having autism.  Having a disease which can KILL their child with having autism.  The mind boggles.

Also what might happen is an Autism Advocacy group I follow on Facebook (The Thinking Person's Guide to Autism) might post an article about how they are not supporting Chili's Restaurant supporting some Autism group which mentions that maybe vaccines cause autism.  The advocacy group says that any comments which say that vaccines DO cause autism will be deleted, and then so many people get SO MAD and what about their RIGHTS?, they ask, is this SOVIET RUSSIA, or AMERICA? and I think go to hell, dummies!  Why should you get to keep perpetrating this MYTH of vaccines causing autism on an autism advocacy page?

I have Facebook friends who believe that vaccines cause their child to have autism.  One friend posts pictures of her infant child making eye contact, saying that he didn't have autism then!  Ugh, it drives me crazy, but what can I do?  I can't post and say, um, yeah he did, because I don't really know and it's none of my business but man, I wish she would shut up about it.  They post about how much they HATE autism and they don't want to call it Autism Awareness Month but Autism ACTION Month.  They want to take action and get rid of autism, because they hate it!  And I think, I don't know what kind of wizards they are but I can't separate autism from Anthony enough to abolish it without thinking that Anthony might go, too.

I try and be patient with people -  I am lucky enough to have four kids, so I have a very clear example of how four kids with the same parents can have the same vaccines and if only one out of that four has autism, maybe vaccines didn't cause it?  Also, if maybe another child out of the four is kind of a weirdo, sensory-wise, maybe that can prove to me that genetics might be a cause of autism.  I read another comment from a 'scientist' at Autism Speaks which said that 'probably' the mother's age might have something to do with autism and I mean, I'm no scientist but do we say probably in science a lot?  Without any actual facts to back it up?  Because if we do than my scientific statement is that since I was the youngest when I had Anthony and he is the only one with autism, I 'probably' disagree with that 'scientist's' theory about the old moms.  But anyway sometimes when people have only one child and that one child has autism, maybe it's easier to blame vaccines, since they have no built in focus group like me.  I know it's really hard to have a child with autism, I want someone to blame sometimes too!  But then I think - and this is the KEY - I think what good does it do Anthony if I find someone to blame?  In what way does that help him or enrich his life?  And then I think, it doesn't, not one bit and then I forget it.

Anyway.  Here we are in April again, Autism Awareness Month.  Funnily enough (ha ha boo hoo) Anthony is having a VERY hard April so far.  He has had two terrible weekends in a row, but I am just hoping it's the darkness before the dawn.  I dream someday maybe the mud in the back yard will clear up and we can go outside and get fresh air and be happier.  It's been a long winter.