Monday, September 30, 2013

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.

Wednesday, September 25, 2013

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.

Friday, September 06, 2013

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!