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

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.

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.

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.

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.

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!

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.

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.

Update - Medication and OT

So I forget if I said but Mike and I took it upon ourselves to down the dosage of Anthony's epilepsy medication and we have seen 100% better behavior.  He was having a toileting regression, acting super aggressive and crazy in general, and it's just so much better.  His OT told me tonight that she felt like he "was back", she said they had great communication and that many times he smiled at her and cuddled into her neck.

I feel so glad, despite the fact that the scumbags at Anthem BCBS have denied our appeal, or at least this step of our appeal, that he is back and is cuddly and sweet and having so much success.  As I type this, Mike is giving Anthony a bath and I fear from the sound of things that he is splashing water every where, which is SUPER annoying but I'm not going to worry about that right now.  It's just water.  When he was acting in such a crazy way two weeks ago, I was so sad, I felt like I didn't even recognize him, I am unfamiliar with the feeling of being scared of Anthony.

So yes, the insurance company denied our appeal.  They want him to just - go to school!  They are not there to cover educational expenses, which, um, we are not asking for that!  We have a medical doctor who has prescribed Anthony FORTY hours a week of ABA therapy and they are acting like we want them to pay for his summer camp or something.  They also said he appears to have slowed down on his progress, which really gets me right where I live, I think, screw you!  It's true that I can't see Anthony's progress on a daily basis but I know how hard he is working and we are working and his therapists are working and it drives me crazy that some asshole in some suit is sitting in an office, drawing a line through his name and just giving up.  I swear I am not a violent person but I would very much like to smack this "doctor's" face, the one who says that Anthony doesn't need ABA therapy anymore.  I mean, they are not even saying that.  They are saying he's not doing that well with it, he's almost nine years old, give up.  Give up on him and send him to public school because he is not making fast enough progress at his ABA therapy center.  I challenge anyone to tell me how that makes sense.

ABC's of Autism - Q

Q is for Question.  Or query.  My dearly departed friend LeBron used to make a joke, where he'd say "I have a little query", and then he'd say, but really, what prep school boy hasn't? Ha!  

I have so many questions about Autism.  And Anthony.  And now epilepsy.  And medication.  And life.  And state supported waivers.  And - just everything!  

Specifically, we are having the hardest time lately with Anthony.  I took him for a checkup at his neurologist and reported that he had had one 'breakthrough' seizure, which I guess means that it broke through the medication?  Anyway, he wanted to up the dose so we did.  Also, he prescribed Anthony a medication that is used for ADD, he said it would help him focus and that it would be great to see what Anthony could accomplish if he could focus on it.  I agree, of course, so we decided to do it.  

There were some problems.  He gave me a card which said that I'd never have to pay more than $20 for a copay but the card was expired so instead we paid $84.  We have to give it to him early in the morning because it wears off all day and this way maybe it wouldn't affect his sleep, or his appetite.  It was also more medication to give him and we have had a hard enough time giving him the seizure medicine, so it was a lot to add another 2 mls, even though that doesn't sound like much.  But we did it.  

It's been like two weeks and we are seeing absolutely no difference in a positive way from the medication.  Certainly we are not seeing 'focus', whatever that looks like.  They have been reporting from his school that he gets a little weepy and cries at around 1:00 each afternoon, but we haven't seen that on the weekends, so I think that is probably more related to school-related stuff.  Since we upped the dose of his epilepsy medication, we have seen a lot of aggression from Anthony and it's terrifying.  I swear I would rather have him have a seizure than raise his legs to kick me in the face, or pull my hair, or both at the same time.  

Last night I took him to OT, and it was a mess.  We were early so I said let's go get you a soda, which I sometimes do when we are early.  I wanted to get one for me too because I was so tired I thought I'd fall asleep at the wheel.  But the McDonald's drive through was all messed up, I left after a few minutes of un-moving cars and went to the Hardees next door, but there appeared to be some kind of a problem THERE too, and anyway we were late.  Also, Anthony squooshed his soda all over him, soaking his shirt, underwear and pants.  I had everything in the car so I tried to bring him inside to change him and that's when he kicked me and then he slapped me.  I mean.  That makes me really mad!  I am turning myself inside and outside every damned day and he's going to HIT ME?  Really, I said?  REALLY?  Then I got a hold of myself and said, Anthony.  You can't hit me because we have to go inside and go see Amy, so let's go, and he did.  Then he peed all over his new clothes five minutes later and at this point I just wanted to go home.  He was CRAZY, like some kind of jungle boy.  Amy, his OT, said no, he really needs to be here when he's acting like that, which I really appreciated.  Every time he acts out or something happens at his school, they call ME to ask me what's going on to cause it and I'm like, really?  How the hell would I know?  I never see him and when I do he is pulling my hair!  I mean, I know they are not blaming me but it feels like it to my paranoid mind and it was a great relief last night to have someone try to help me.  

Soooo, I put him back in his soda pants, which were at this point better than the urine pants and that Amy got him completely calmed down and sweet and back to his normal self.  Mike and I decided that we aren't going to give him the ADD medicine anymore, I mean, what is the point?  It's not doing anything but hurting him if he is taking a medication that doesn't work, right?  We also decided that we are going to go back to the original dose of the epilepsy medication and see if we see less aggression.  If you google aggression in autism, what you will find is a lot of recommendations for Risperdal, which is an anti-psychotic medicine and has a million side effects, ranging from weight gain to, oh, early DEATH, which, COME ON!  Personally, I think that what Anthony is dealing with is the anxiety caused by not being able to TALK in a world of TALKING and it is bringing him down and he acts out by jumping, climbing, slapping, pulling hair, kicking, etc.  Mike and I have to figure out how to control it so that we can win in the race against time wherein Anthony gets bigger than us and starts hurting us, or God forbid, the girls.  

The thing is, I really think getting Anthony his service dog would help, a lot.  But there are more than 60 people on the waiting list for dogs and I don't know when we'll get the call so I have to do something in the meantime.  I haven't even mentioned it to Anthony's neurologist because I know that I would come across like some crazy dog lady or something, suggesting we replace medication with a dog's love, but I honestly think it would help.  

But again, there is no one to help us.  No one to guide us, only medical professionals to suggestion things that I know won't work but I do anyway, because I am so desperate for help.  For the first time in a long time I am really scared about what is going to happen to us.  When Anthony acts like he's been acting, tearing the glasses off Mike's face, laughing maniacally as he kicks me in the throat, I think, he can't live here.  He can't live with us and be like this.  It is a terrible thought and I don't want to have it but I have to think of everyone here and in order to do that, I have to think if one of the people here is kicking the ass of another person, something has to be done.  So we will try, but man.  I really wish we could get some help.  

Frozen Review - SPOILERS!

I, like everyone else in the world with two ears and a heart, love the movie Frozen.  Maria has seen it the most at four times, Mike has seen it once with her and I have seen it twice with her.  She went the first time on a(n) (awesome) field trip.  My neighbor gave us the cd and we listen to the music a lot.  Maria and Veronica's favorite song is Let it Go and it's mine too.  When I first saw it in the theater, I felt like I was seeing a Broadway Show - I thought, 'these are some incredible production values!', ha!

My internet friend Bonnie has written about Frozen as it relates to kids with autism and I can't stop thinking about it and I can't stop CRYING when I sing the song.  So.  This is SPOILERY, if you haven't seen it yet.

The back story is that Elsa is a newly crowned Queen of Arrendelle (sp) and at her coronation party, it comes out that she has this strange and secret power, which is that when she touches things they freeze.  When she and her sister Anna were little, she used to use  her power to make a winter wonderland in their ballroom, but one time she mistakenly shot Anna with some ice and her parents had to take her to see some trolls to warm her up.  But by warming her up and healing her, they had to take her memories of Elsa's power.  Elsa had to stay in her room and they closed the gates to the castle.  This was the parents bright idea, which, whatever, I don't want to say anything too bad about them because of course (Disney) they die early on in the movie.

So Elsa is in her room for years and years and Anna is running around the empty castle and then it's Coronation Day and they open up the gates and Elsa is ... coronated?  Queened?  I don't know, but she has a near miss when she starts to freeze her scepter or whatever she has to hold.  She and Anna have an argument later and Anna takes one of her gloves and boom! she shoots out some ice and the townspeople turn on her and she has to take off to the North Sky Mountain or whatever and she sings this song.  She is realizing how good it is to be free and she sings:

The snow glows white on the mountain tonight
Not a footprint to be seen
A kingdom of isolation,
And it looks like I’m the Queen.

The wind is howling like this swirling storm inside
Couldn’t keep it in, heaven knows I tried

Don’t let them in, don’t let them see
Be the good girl you always have to be
Conceal, don’t feel, don’t let them know
Well, now they know

Let it go, let it go
Can’t hold it back anymore
Let it go, let it go
Turn away and slam the door

I don’t care
What they’re going to say
Let the storm rage on,
The cold never bothered me anyway

Then, she starts to see the good side of it - now they know!  She doesn't have to conceal it or not feel it anymore, her power, because she is alone and free!  This next line is where I start crying because she looks back at the town and laughs a little as she sings:

It’s funny how some distance
Makes everything seem small
And the fears that once controlled me
Can’t get to me at all

It’s time to see what I can do
To test the limits and break through
No right, no wrong, no rules for me
I’m free

Let it go, let it go
I am one with the wind and sky
Let it go, let it go
You’ll never see me cry

Here I stand
And here I'll stay
Let the storm rage on

It makes me cry because I think about, not just Anthony, but kids with autism and how - well, not Anthony at all, but some kids who have to go to school and 'act normal' or not stim or whatever, how hard it is for them.  We are (?) lucky because we have never been in a situation where someone has said, sure Anthony, come on in to school and learn your reading and writing and arithmetic, just pass for neurotypical because he can't.  It's never been an issue for us.  But the thought of him working so hard all day and then just coming home and, like screaming or hanging upside down or spinning around, because he feels free and like we can appreciate his power which is seen as a curse by other people, well, that is what makes me cry.

I get so annoyed with him.  He is so, so loud.  Some days I think I will seriously LOSE MY MIND if he doesn't SHUT UP.  But if I try and think of him feeling free!  And having some distance and not being afraid! And being one with the wind and sky!, it makes me feel better.  Also it makes me feel sad because I think he is never going to probably sit in a classroom and raise his hand and josh around with friends and - I mean, I hope he will but he probably won't and that has to be okay but sometimes it's still not.  So I am always on the verge of tears, and that's why.

The other part of the story that really gets me right where I live, as it pertains to Anthony, is that Elsa decides that she is going to just live on her own in her (beautiful) ice castle and she won't have to worry about anything.  Because she doesn't know that she froze her whole town and that everyone there is suffering, until her sister comes and tells her so then she whacks her with frozen power AGAIN (if you ask me Elsa should stop GESTURING so much, the dummy) and now she gets her in the heart, which the troll said can't be fixed.  But it can be fixed, with an act of true love, which of course happens and Elsa figures out that true love can save not just Anna but Elsa too and everyone!  True love, she says, of course!  And then I start to think that even though Anthony has this power that no one really appreciates as a power and is in fact kind of a PAIN, the only thing that will save us and him is TRUE LOVE.  Once Elsa realizes it, she uses her power for good and she can control it.  So I think, well, we can just truly love the heck out of Anthony, and not just him but each other, Mike and me and these other kids and then we can use his power - we can let him live in the world and be happy.  And then I cry like this boo hoo hoo hoo HOO!  And this is all while I am singing in the car and Maria always says, what is WRONG with you?  Ha!

Anyway, obviously, I give the movie two big thumbs up and also ten tissues.

ABCs of Autism - P

I want to write this post about patience, which is funny AND ironic because the p on my keyboard is broken.  I know just what happened to it, too, I vacuumed it up last weekend.  I have been working on the computer in the toy room because my laptop's keyboard is broken and these kids bring so much damned food in here, it's always disgusting, so I vacuum the computer desk and whoosh!, up went the  p key and the F5 key, too.

Anyway, patience.  It is important to work on patience with any kids, but probably more with four kids and definitely more, an infinite amount really, if your kid has autism.  So many things can go wrong on a daily basis, AND you have a lot of worry about the near and far future, it's definitely necessary to have an abundance of patience.

I give you last week.  Anthony has been off from 'school' since December 20 and I ut it in quotes because it's of course not a school but a therapy center.  He is prescribed 40 hours a week of ABA therapy, but he was off for two weeks.  This is maybe so that his therapists, and other therapists, can have time off, which I'm sure they really need.  When I went in for my last meeting, it struck me how hard they work, how involved they are with their learners, as they call them.  But Mike and I, after going through the two and then THREE week break with Anthony, are of the opinion now that it can't work for them to have such a long break again.  It was horrible.  It was horrible and THEN they had ANOTHER week off because we had snow and extreme cold in Indianapolis.  Anthony's school follows the closing schedule of the school corporation in the town where his lace is located, which is mostly not a problem, but it got really crazy last week because Thursday afternoon, the school corporation finally said they'd just have a delay on Friday and then the parents in this rich suburb of Indianapolis went insane, so worried that their widdle children's feet might get a widdle bit wet and HOW could they stand at their BUS STOP when there was SNOW DRIFTS there?  HOW?  How could they ut them on the bus, they asked on the school's Facebook age?  Wouldn't the bus SLIDE?  OH NO!  What will we do?  Well, what the school corporation did was change the delay to a closed day and so we had to tell Anthony that even though we told him YESTERDAY he could go to school today, in fact he would be home another day.  It was like 43 degrees on the day that they canceled school.  It was ridiculous and frustrating and it made me want to give u.  I wanted to just stay in bed and give u!

But of course I didn't, we can't.  We had to get u and put on boots and go for a walk and try and get some fresh air and try and tell the powers that Be at Anthony's lace that we think closing down for that long is a bad idea and detrimental to him and his program.  We also have to try and see if they can see that it's kind of stupid to follow a school cor that is so worried about students standing at bus stops when no one at Anthony's place even takes the bus.  Anthony's never even been on a bus, ha!

Luckily, Anthony still had occupational therapy while he was on break.  He had OT on new year's eve and on the Tuesday after the snowstorm on Sunday.  We went outside every day that we could.  He went to the nearby trampoline place the Saturday after New Year's, but he couldn't go last Saturday because we were having a birthday party for Maria at 11:00 and we had so much to do.  Trying to get this house ready for a arty with everyone in the house is another exercise in frustration, I was basically praying for a quick death most of the morning and if Mike had taken Anthony to the jump place and not been here, I know I would have lost my mind.

I have more patience with Anthony than I do with the other kids, as I've said.  I have more because I need more.  This morning I tried to wake him u and give him his medicine and get him out the door by 8:10 and he allowed me to dress him, but fought me like an animal when I tried to give him that medicine.  He kept pulling up his legs so he could kick me, I thought, has he taken a self defense class somewhere?  Isn't that what they teach you?  Finally, I got him his medicine, gave him his congratulatory piece of gum, and put the girls in the car.  I went back upstairs to get him and of course, he was soaking wet from an accident, so I had to change him and then get him downstairs and in the car so I could get him to school on time.  Of course it is snowing, I just got the van back yesterday from six weeks in the body shop from when we got rear ended and it's making a funny noise, and I thought to myself, I can't do this.  I can't.  I can't do it!  But then I just put the car in reverse and pulled out of the driveway and off we went.  What are my options?  To not do it because it's hard, because it seems impossible?  Not allowed!  In a situation like that, I have to be patient and wait for it to get better.  It always does.

We are trying to find things to put on our budget for our medicaid waiver.  I know they will cover respite care but do we have to find the car?  Do we have to have a respite care babysitter for Anthony and another regular babysitter for the other kids?  Can I put my Y membership on the budget because Anthony takes adapted swim lessons there?  We have so many questions and we haven't even been approved yet. maybe we won't and then we will have to aeal.  That will stink but we will have to do it, right?  We have to be patient and wait to hear about the waiver and then be patient and wait for our medicaid counselor and then be patient and wait wait wait.  We went on this list five and a half years ago, we heard we were eligible six months ago, and we are still waiting.

I am not a patient person by nature, I guess.  But if you have a child who is diagnosed with autism, start brushing up on your patience skills, you are going to need them.  Maybe read some Book of Job or something.

**Note, in order to get the p key, I typed it with a pencil and then copied and pasted it so if there are errors forgive me!**

ABCs of Autism - O

O, I am terrible at this, ha!  Really we will talk about Outlook for O.  

I have been following this guy on Facebook and reading his blog, Autism Daddy is what he goes by, and I have really been enjoying his blog.  It's I guess not surprising that people go on and on about what a great DAD he is, how his OUTLOOK is SO GREAT, on and on and on in a way that I don't really see people going on about mothers of people with autism.  I would chalk it up to regular sexism, but I think there's something else, too.  I think that Dads of (usually) boys with autism can have a lot of problems adjusting, as documented by Rodney Peete, and I think we are all just really impressed when we see a Dad acting in a good and positive way.  Of course, we only see the outside of people's lives when they show us what they choose, but this guy is very interesting and seems to have an overall realistic but sunny attitude about his son, Kyle.  He is also close to Anthony's age and the dad is close to Mike's age and the boy has pretty severe autism and is non verbal and was also just diagnosed with epilepsy, so there are many similarities and God knows I love to find similar stories to ours, to help us feel not so alone.  

Anyway.  I try to have a positive outlook about Anthony and his having autism.  I remind myself that he is a healthy person, and that he is really smart.  I try and look at the sunny side of it, believe it or not, even if by nature I am a pessimistic person.  It has been so ... I have no idea what I was going to say there, we are all home and these kids are driving me bonkers.  I only thought I could write this because Anthony has been sleeping literally all day, we think he had another seizure in the night because there was evidence that he threw up and he never and I mean never sleeps like this unless he has had a seizure.  We want to call the doctor and see about if we should do anything but no one is working today because it's -15 degrees and we have a foot of snow and declarations of EMERGENCY have been made here in Indiana, so we are just letting him sleep and hoping for the best.  

Anyway, I am a pessimistic person and I felt really superstitious in a way that I never was when Anthony was a baby.  I would have ONE tiny thought about how he had slept okay the night before, or that maybe things were getting better and boom! he would have a terrible night.  When Maria was born, I thought surely I can't have two colicky babies in a row, right?  And then she was super bad too, and by the time I had Veronica I just expected it to go badly and then when it did I felt bad that she was so bad but also HAPPY that I was RIGHT, for once!  

But I can't afford to be pessimistic about Anthony, I simply have to believe that things are going to work out okay for us, for him.  I have to believe that his story will be more like this girl and less like the horror stories that I read seemingly everywhere else.  He is so smart and so great and so...Anthony that I feel like I owe him a positive outlook.  Lord, there are so many people with such bigger problems and there are people who don't even get to raise their kids.  I mean, Anthony is right here!  He is smart and sweet and so cute and charming and he also has severe autism and sensory issues, that is the whole picture, that is what we are working with.  You can't choose your baby, as my mother used to tell me, but I know that we can choose our outlook and we owe it to Anthony to choose a positive and hopeful outlook.  I think everyone does.  

ABC's of Autism - N

N is for NEVER.

When you get a diagnosis of autism for your little kid, it is hard to not be negative about it, to not feel on some level like your life is over.  It is over, really, ha!  I mean I'm kidding but it is - the life that you thought you were going to have is over, and that sucks, but really, who knows what kind of life they are going to have, especially when that life involves other people, and especially a child?  You can't pick your baby, my mom always used to tell me, and it turns out it's true.  Mike and I have had to do a lot of soul searching, together and separately, although thank God it has mostly been together, and I think what we have found is that you have to be ready for the worst but hope for the best.  You can never say never about your child with autism.

Anthony was diagnosed when he was 2.5 years old, although I guess the official diagnosis came right before he turned three.  I will never forget it, when that school psychiatrist said to me, has anyone ever said the word autism to you before?  Thank God, we were prepared for it, because I can't imagine NOT thinking that he had autism and someone saying it to me.  It was jarring enough and I knew she was going to say it!  Anyway, at the evaluation, they had all these tests that they do, does he look under a cup to see a ball that is there?  Does he follow one step directions?  I mean, he did nothing they told him to, he wouldn't even sit down.  I remember thinking this is how it's always going to be, he will NEVER be able to follow directions, he will NEVER be able to answer a question or ask one.

And here we are, five years later, and he has made so much progress.  I never thought he would be able to be toilet trained.  I never thought he would sleep all night.  I never thought he'd be able to make a request.  But last night, before he went to bed, he went into the bathroom and (sorry for TMI) pooped on the potty and then slept for like ten hours, asked for a waffle this morning, and has done God knows what else just this morning at school!  I don't like to get my hopes up anymore about anything having to do with any of these kids, but I really believe that the sky is the limit for Anthony.  And more than that - I think if he does live with us forever, that will be okay too.  If when we die he has to go and live in a home or something, I think he'll be okay.  It's not easy for a person like me to think positively about a situation that is so emotional and seems so dire, but you have to.  You have to strike the word never from your vocabulary, or I guess you could keep it in there but only for things like "never say never" and "never give up on your child with autism".  I see stories every day in the news about kids who have finally busted through whatever communication problem they were having and truly, now the sky is the limit.  I would hate for Anthony to have some kind of untapped potential and not be able to reach it because Mike or I thought he could never do it.

When I started this series, I NEVER thought it would take so long.  Maybe I'll finish it in 2014 sometime?  As my nephew Parker used to say, you NEVER know.  :)

ABC's of Autism - M

M.  M, I was thinking today.  M is for Mike, who is Anthony's excellent father.  If your child gets an autism diagnosis, look across the dinner table at your partner or spouse and if it's not a super tough and honest individual who would do anything for his or her family, well let's just say I hope it is.  It is a tough and long road but I feel very lucky that I am married to someone like Mike, who is smart and reassuring and has a great sense of humor and makes our lives not just easier but great.  But I'm not talking about Mike for M, I decided.  Then I thought maybe Miracle.  Or Magic.  So often when things go well with us, it feels like a miracle, it feels like magic.  The other night we were all up in the girls' room before bed and Mike was taking Anthony into his room so I said good night and went to kiss him and Anthony leaned in for a kiss, and it was like magic.  Mike and I were laughing and giggling and so amazed.  Three days in a row, this week, Anthony has sauntered into the bathroom and sat down and pooped on the toilet.  Miracle.  Magic.

But I'm not talking about THOSE words either.  The word I'm using for M is Medicine.  Anthony was diagnosed with epilepsy this week.  We went to see a pediatric neurologist after he had three episodes that we thought were seizures.  As soon as I started looking into it, I looked into vomit and autism and poof! I read that 30-40% of kids with autism developed autism AND it was very common among non verbal kids with autism AND it usually happened during pre adolescence.  I mean, it was everywhere and as I called around to his developmental pediatrician and talked to the nurse there, and as I talked to other parents, everyone, everyone was nodding their heads, yes of course it sounds like seizures, they said.  This makes me really mad, I mean, it's one thing that no one will treat us medically for autism, but could we not treat actual MEDICAL conditions medically?  Do I have to do EVERYTHING?  SHEESH!

I asked for recommendations for pediatric neurologists and then I asked our pediatrician for a referral and he got us in with this guy who a lot of other people had recommended, so that was good.  He was very nice, the doctor, and he said that once a person has two seizures, they call it epilepsy.  Anthony had an EEG, which came back perfectly good, which the doctor says happens half the time.  So now Anthony is taking ... some medication and I forget the name of it, but the doctor said one of the side effects is that it can have a relaxing effect, which, um, okay!  It was funny, Anthony was ON FIRE the day that I took him to meet this doctor.  He turned on the sink 40 times, he was climbing up in the window, literally climbing the walls, tearing the paper off the table, just nuts.  So when we were talking about medication the doctor said this one had a relaxing effect and maybe that would be okay?  Mom?  Ha!

He's only taking it since Sunday, and sometimes I think *I* am going to have a seizure when I am trying to give him the medicine in the morning, but so far, so good.  Everyone keeps saying how SORRY they are and OH NO what will we do?, but I am fine and I think Anthony is too.  I told my brother yesterday, I am relieved to have a medical condition that can be treated medically.  It's not like I took him to the neurologist and the guy told me, yes he has epilepsy and good luck, figure it out.  I feel like I have some guidance and care for the first time since we have had Anthony's diagnosis.  So, onward and upward!

ABCs of Autism - L

L is for Love.  I of course love all of my kids, but I don't love them the same.  I love them equally, I guess, but not the same.  I love Anthony the hardest because I have to.

Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.

Lao Tzu

I just saw this quote recently and it made me think - I love Anthony so much and I am constantly, constantly thinking about it, how by loving him, I get braver and stronger and more able to love him. The first bit of advice that I would give someone who has a child with a new autism diagnosis is this - love them.  Love them as hard as you can and then you'll get strength and courage to love them more and out of that will come an ability to help your child.  You have to just love them, autism and all.  

It's like when people say they HATE cancer or something because someone dies from cancer.  I can't say I hate autism because Anthony has it, and for me, to say that I hate autism gets a little too close to home for me, I can't say that I hate anything that has to do with Anthony.  

Love is the answer, and you know that for sure.

John Lennon

Love is the answer, for sure, as far as I'm concerned.  When you have a child with autism, you can't have the usual, typical things move you to love your child.  Maria has been climbing the monkey bars at school, and it blows my mind that five weeks ago when she started kindergarten, she couldn't do anything but hang from one bar for a few seconds and now every day, she says WATCH THIS MOMMY! and she just swings from bar to bar, so determined and then so proud.  She is doing really great at reading mastery, she can spell all sorts of things and Saturday when we were at the library, she told me she wanted to find books by this certain author.  My heart swells with love and pride when I see her swinging from those bars, and when I looked up the author that she mentioned and found out that he was, in fact, a children's author.  I can't believe the way she is flying through her life!  

I don't have those kinds of moments too often with Anthony.  I have a lot of frustration, a lot of worry, and a lot of - well, a severe lack of faith in other people.  Two times in the last nine days, Anthony has thrown up and then had what appears to be a seizure, and two times we have taken him to the ER.  Well, Mike has taken him because when it happens Anthony can't even move and Mike has to carry him.  The ER doctor this time saw Anthony for maybe ... two minutes?  I'm not sure, she told Mike that she couldn't find anything wrong with him and that we should follow up with his doctor.  I can't imagine how much we're going to be charged for that special care.  Now I've been trying to get his pediatrician to order an EEG for him for two days and nothing!  So people are jerks, and I think you have a great opportunity to realize just HOW jerky they are when your son or daughter has autism and you have to count on other people so much.  

Sometimes we are so tired!  Friday night I worked super late, the restaurant was crazy and I was there until midnight, and then I met my sister for a drink and THEN I got home and I couldn't sleep until like 3:00 and then Anthony was up at 5:30 and the baby at 5:45, and ugh, I was so tired.  I wasn't probably as tired as Mike, we were both just beat.  That rarely happens anymore, we are on a pretty good run of Anthony sleeping well, which I hate to talk about, but my point is that it's hard to feel loving feelings when you are tired, or worried, or sad, or worried or tired.  So when you find out that your child has autism, even if it is your first instinct to get mad or want to find a scapegoat or maybe you want to wonder WHY this is happening to YOU, my advice is this - feel all those feelings for about 24 hours and then just start loving your child, and keep your mind and heart so full of love that there isn't any room for hating autism, or for being mad at anyone or anything responsible.  You don't have to love being so tired or worried, I mean, DUH, who would love that?  Nobody, but by loving your child so much you will find that it doesn't matter about all the stuff that you have to do, all the extra stuff.  Because it just grows - courage grows from loving someone deeply, like Mr. Tzu said.  Or Mr. Lao.  When you are tired, or doubtful, or you hate every medical professional around and you think why am I doing all this?  WHY LORD WHY, as I always think?  Just remind yourself the answer is love.  And you'll know it for sure.  

ABCs of Autism - K

To know, know, know him, is to love, love, love him, and I do, and I do, and I do.

Can you know someone if they never talk to you?  On Survivor or Big Brother, or any of the shows wherein someone votes out someone else, sometimes one says to the other, I had to vote you out because I don't even know you, we've never even talked!  I read this blog about a girl who doesn't talk, her mom is the one who has really inadvertently guided me on communication devices, and she said one time that if her daughter didn't have a communication device, she wouldn't know her at all.  It really struck me because I think I know Anthony and I think he knows me.  His receptive language is always better than I think.  I tell him all the time that I love him and that I will take care of him - that I'm proud of him and that his father and I will always be here to take care of him.  I think he knows that!

He is just starting with the iPad as a communication device and while I am really excited, and I know it will mean a lot for him, I don't feel like I KNOW Anthony better because he can tell me what he wants to eat, or that he wants to watch his favorite video.  I can't say I feel like I know Maria or Veronica better than I do Anthony - I feel I know him really well.  One of the things I always used to say in those IEP meetings with the public school was that I may not know anything about autism, but I know everything about Anthony.

Friday night, I was at work and Mike texted me "call me ASAP".  My phone's battery was almost dead so I tried to use our work phone but THAT didn't work and by the time I went back to my cell phone, Mike was calling me.  He told me he was on his way to the ER with Anthony, he said he had thrown up after his bath and that he couldn't sit up, he couldn't stand up, and that he was, like, listless and drooling.  I left work and drove the hospital, the longest drive of my LIFE.  I was thinking, what could it be?  Did he eat something that poisoned him?  Mike said and I had seen that he was FINE at 5:00, Mike said he ate well, he was climbing on that damned fence, perfectly normal.  I forget what else I thought it could be besides poison but I was convinced that I was just going to find Mike at that hospital, and that he was going to tell me the worst.  I am dramatic by nature, I guess, and I also - I feel like once we got that diagnosis about Anthony, those years of worrying about him have taken a toll on me and that toll is that I'm a crazy person and always convinced he is going to die, that I'm going to lose him.  Anyway.

So Mike texted me when I was still on my way and said they were back in a room, so I thought that was good.  Unless, I thought, Mike just didn't want me to drive off the road with the bad news, but I just put that out of my mind.  He was lying under a blanket when I got there, his temp was around 96 and he was super pale.  They said they were going to do a CT Scan to rule out appendicitis, that his stomach seemed tender.  They also said they were maybe going to do a catheter and I said that it had to be an absolutely last resort thing - UGH I mean, COME ON!  Anyway, they never had to do it because the doctor said he thought he smelled strep on him when he looked at his throat and it was strep.  Isn't that crazy?  I don't know how it happened so fast, but man, it was a giant relief that he could just take five days of antibiotics and be fine.  We are on Day 3 of them now and although it STINKS to give him the medicine, it's the best news we could have gotten.  I was so worried and we were home by 10:00!

Of course he has been a crazed lunatic since, he feels better, I guess.  I wish that he could tell us if his throat hurt, or his stomach, or something, so that we would know better how to help him, and so that we could avoid ER trips like that.  I don't know if this is something that will come with the iPad.  So far, he seems to only request his Wagon Wheel song that he likes so much.  But I'm confident and hopeful that as he uses the device more, he'll come to know that he can tell us anything, not just that he wants to hear that song.  Ha, we KNOW that for sure!

I feel like I know Anthony really well and I hope he feels like he knows me, knows Mike, the girls.  I may have to look harder than other moms but it doesn't feel like it.  As with everything else regarding Anthony, it feels completely normal to me until someone points out that it isn't.

ABCs of Autism - J

J is for Joanne but this is not really my blog, plus I hate to go on and on about myself, so I'll refrain, ha!  It's not true that I hate to go on about myself, I love to talk about myself.  I remember one time when Anthony was a baby, my only baby, so maybe he was less than a year, Mike and I were watching the Departed.  We used to watch a lot of movies and tv in the basement, so we couldn't hear anyone who was maybe crying or grousing.  So anyway, we were watching The Departed and Vera Farmiglia is in it, and she has really pretty blue eyes.  I told Mike that and I said, I used to have blue eyes and Mike looked at me like I was crazy because of course I still did.  Then it occurred to me that I sort of felt like I must have brown eyes now, because I had been looking into Anthony's brown eyes for so many months.  That is crazy, right? That's motherhood, for me anyway, and for Anthony too.  I spent so much time with him, and his eyes were blue and then turned brown and I guess somewhere along the line, I thought my eyes must have turned brown too.  I really felt different, I guess.  Anyway.

J is for jealousy, for our purposes.  I am jealous all the time, of everyone, who I think has a better and by better I mean easier life.  I try and fight it because a) it's just not good for me and also b) it's not good for my kids and family and it's not an actual representation of my true feelings about my life - I love these kids and Mike and my family, I just don't always LIKE it so much.  Also, c) everyone is full of it and just because someone says how great their life is and how many times they might say LIFE IS GOOD on Facebook, it doesn't mean it's true.  It doesn't.  People say all kinds of things about their life, and they say them for all kinds of reasons.  I try not to get annoyed with people if they are being what I think is braggy about their FABULOUS life because maybe they are just trying to be happy and who am I to be mad at someone about that.

But I think it's really normal, when you get an autism diagnosis, to be jealous of other normal families, whether or not they are really normal in reality.  Would I pick this hard life if I had a choice?  I guess not, I mean, it's not my dream to worry about toilet training for EIGHT YEARS of Anthony's life, I don't like to worry about him, I don't like not knowing from month to month what is going to happen to us.  But I think if I really think about it, no one else knows what their futures hold either.  I saw a lady on the news today who lost her son to this certain kind of brain cancer, he was sick for 18 months and now he's gone and I think man, I bet she didn't think her life with him was going to go like that.  None of us know what will happen - once we have kids, our lives are not our own anymore, nor are our hearts.  I don't know who said it's like your heart is walking around outside your body, but it's true.  For us, maybe we are just more aware of it than people who have typical kids.  So even though I might get jealous of small, teensy things that other people have or don't have, I wouldn't trade my life, my kids, any of it, not for the world.  Maybe people are jealous of ME, I figure.  I mean, I think that would be really dumb, but I suppose anything is possible.

ABCs of Autism - I

I has to be for Insurance.  Although *I* hate to discuss it, I have to.  We have never had to deal with the insurance company so much as we have in the last five years and it's horrible.  When we first looked at Anthony's therapy center, we found out that Mike's insurance didn't have to cover us, because they are self-funded and because he works for the Federal Government, they don't have to abide by the autism mandate, and we didn't know what we'd do.  The lady at Anthony's school recommended I talk to another parent of a learner there, a lady who got her son his own insurance policy, and this woman was so nice to me, she gave me her insurance agent's information and said that they just paid their premium and the rest was covered.  She also told me that her son had made great strides at the ABA center, it was a great news phone call, and she remains a friend of mine.

When we thought we could get insurance coverage for just Anthony and they would pay for everything, we didn't believe it.  We were so nervous, like, the whole first year - I mean, we went from thinking we were going to have to get a Line of Credit for $30,000 to thinking we were going to pay $160 a month for his premiums, it was hard to believe!  But it was true, and he was covered for a long time.  We were able to get insurance for Anthony even though he had a pre-existing condition because of the autism mandate in Indiana.  The rules have changed, now, because of the fact that insurance companies are run by a bunch of horrible people, and in order to get your child his own insurance policy, at least one parent has to be on the policy too, which drives me insane, but at the time that we got Anthony's insurance, we just had to get it for him.  It has made for some extra paperwork and the premium has almost tripled since we've had it but as Mike says, as long as they keep paying, we can't complain.

Around two years ago, when Anthony was six, was when we started getting some letters from the insurance company, but it was so strange.  We'd get them on, like, the Saturday of Memorial Day weekend or something, these vaguely threatening letters.  Then of course, we had to take him to his developmental pediatrician every six months to prove that he still had autism.  It's terrible, to be so scared all the time, but we just did it, because who cared?  As long as they were still covering him, and he was doing well, who cared?

Then of course, this year was when they really started to threaten, to promise, that they were going to not pay for all his therapy anymore.  Because he is at school age now, and he is, as they constantly remind us, entitled to a free and public education, they think he should just - go to school.  Just get on the bus and go to school!  Be mainstreamed!  GO TO SCHOOL!  And he can't, I think, I mean, not in the way that other kids maybe can.  He is just getting toilet trained, he is just starting with the iPad as a communication device, he doesn't talk at all.  When I pick him up now, his therapist tells me how his day was, they write notes in his book, but what will happen if we just send him off to school, I wonder? But here's the thing - the insurance company doesn't care at all about Anthony and I love him - we are completely at odds when it comes to Anthony and I don't know how to navigate that.

But we have gotten help - the Training Director at Anthony's therapy center has been here before, they have done appeals before, and we are in the midst of it.  Mike went to a meeting yesterday at what would be Anthony's school - to take a look at it, and to see if there is a way we can send him there in the mornings, maybe, and then he can go to Little Star in the afternoons.  He said it seemed good, the teachers seem nice, and one even goes to our church, which is nice.  But he said that they had concerns that Anthony wouldn't stay seated, and um, he won't!  I don't know if he can right now, not for very long anyway and I worry that it's these sort of demands placed upon a kid like Anthony that leads to teachers and teachers' assistants to tape kids' hands to their desk, or to strap them in a chair and turn the chair on its' back, because the kids just won't listen!  I think they think, here's these OTHER kids with autism, and THEY can sit for hours, why can't this one?  Of course the answer is obvious WHY some kids can and some kids can't, but if what you are doing is MAINSTREAMING kids, obviously you are not focusing on their differences.

Our hope is that everyone decides that Anthony is not ready to have his ABA therapy cut from 40 hours a week to 20 hours a week in the next six months, but now we are more accepting of the fact that maybe if we focus on next fall as a goal for him to go to school part time, he will be better prepared and we all will be in a better place to go.  But I still resent the insurance companies and their scumbag doctors who pull key words from reports about Anthony and say that he is "doing well" and "communicating" and he should be able to be in the FREE and PUBLIC school.  The way I see it. Anthony sees a doctor who is prescribing ABA therapy 40 hours a week, and the insurance company is deciding that that doctor is wrong.  They want to look at an ABA center as being for early intervention only, someone at Anthony's center told me, but I don't know what will happen to Anthony, just because he didn't get better in time.  You can only be profoundly affected by Autism until you are six years old now?  Because the insurance companies say so?

It's awful, it's awful to deal with all this AND everything else, to make appointments to see schools that you don't want to see and meet with people who don't want to give you anything, at the same time that you are making sure Anthony isn't pooping in the yard, or running away, or not getting a dog.  But what can you do?  People have it worse, that's for sure.  I should have made I for IMPATIENT, because that's what everyone in the house is, so I have to wrap this up, ha!