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!

ABCs of Autism - H

Tonight I was cracking up, thinking how all I really want to talk about, scream about, is the toileting situation.  He is doing so well with it at school and doing pretty well here at home with peeing but the pooping outside, the poo smearing, the constant fear and worry about when the next time he'll poo is awful.  So I was cracking up, thinking that the ABCs of Autism should all be about poo.  A - that poo thing is a pain in my ASS, B - BOY, do I hate that poo situation, C - The poo is driving me CRAZY, D- DAMN, I am mad about the poo situation, ha ha ha!  Anyway, H.  High Functioning.

Is he high functioning?, everybody asks, when I say Anthony has autism.  Well, not everybody asks it but a lot of people, the majority.  He's not, I guess, I always say because he has such a lack of verbal communication but I just looked up the definition and now I'm mad!  I don't know what Anthony's IQ is! There is no way that that child could take an IQ test, it's insane to think he could. It burns me up that someone makes a decision about his IQ (that it's low) when there is now way he could take an IQ test. That seems like less of a problem that Anthony has than that the stupid TEST has, if not everybody could take it. Anyway. When you have a child with autism, you can expect that question a lot, so I guess we should know what it means.

So here's the characterization, off of Wikipedia, which is not always right but it seems right in this case:

High-functioning autism is characterized by features very similar to those of Asperger syndrome. The defining characteristic most widely recognized by current psychologists and doctors is a significant delay in the development of early speech and language skills before the age of 3 years.^[2] The diagnosis criteria of Asperger syndrome exclude a general language delay.^[4]

Anthony definitely doesn't have Asperger's syndrome, he has a severe language delay.  He is eight years old and he has barely any words anymore, although he is tricksy, as Maria would say, because sometimes he'll want a cracker and say CRACKER, as clear as a bell.  Sometimes he has to go potty and he'll say POTTY.  Who the hell knows but he definitely has a language delay, he had it before he was three and he certainly has it now.

Sometimes I get down about our situation, about Anthony's situation, because he is not HIGH FUNCTIONING, or whatever.  But then I see a story like this, about this girl, and she is obviously a genius.  I mean, she still has autism, but she is so smart and sensitive, she just can't communicate like everyone else.  And even though she might have to live with her parents and maybe she won't have a regular job or whatever, what a gift she is giving to people, to parents like me, and to everyone who thought they knew what it meant when someone had autism and was non verbal.  When I see something like this video, I think there must be so much inside Anthony, so much, and it's my job and Mike's and his therapists and teachers and all of us, to figure out what it is and how we can get it the hell out of there.

Most days I feel like I am up to that challenge, so I have to just figure a way to push through the days that I don't feel like I can do it.  We have to keep pushing and trying to make him not *high functioning* according to some random definition, but actually high functioning, in the world, so he can function and have his best life.  Here's to Hoping!

ABC's of Autism - G

G.  God.  Grade School?  Gut?  Anthony doesn't have any problems with his gut.  Nor does he ever have seizures, although there was a time where his daily meltdowns were so horrible and terrible that I thought maybe he was having a seizure.  He wasn't.  I have read a lot about 'leaky gut syndrome' or whatever the hell and Anthony doesn't have it, I don't even know if I believe in it, so I guess that's not what I should talk about for G.

I guess if Anthony were in Grade School, he'd be in the third grade.  When I was in third grade, I knew a lot of stuff!  I knew that busy was spelled with a z and nickel was spelled nickel, even though I got both those words wrong on a spelling test in third grade.  My teacher, who I'll call Miss O'Connell, because that was her name, said busy had a z and nickel was nickle.  I do not even know.  Anyway, I had been a cheerleader for a few years, I knew how to spell, and I had a lot of friends.

I think maybe Anthony knows how to spell, but he doesn't get an education like that at his school.  His rotten insurance company wants him to cut his ABA therapy by half in the next few months and take advantage of his free and public education and I guess we will have to do that, probably.  I want to talk about I  for Insurance, so I don't want to say too much but Mike pointed out that maybe grade school would be good for Anthony.  He said if we want him to communicate with us via typing, some day, maybe he should learn his letters!  As usual, it's a good point from Mike.  It's hard for me, I am really scared about sending him off to school, a school that is possibly full of bad teachers and mean students.  I mean, I'm sure it's NOT and they're NOT but just the thought of sending him off like that, what will he think?  Where will he think his therapists are?  It's hard.  I hope that we can get some time, time for him to use his iPad better and communicate better so we can tell him about school and he can tell us what he thinks about it.

It's hard, at the beginning of the school year.  I see all these friends on Facebook whose kids are the same age as Anthony, whose kids are starting third grade, playing soccer, etc.  It makes me happy to have Maria in school, to finally feel like I am a parent to a kid who is starting kindergarten, etc., but it still stings a little.  I am in a constant state of grieving and also wonder.  No wonder I'm crazy!

I have been falling off a little bit, doing these.  Felicity is driving me mad, she is awake now from a short nap and will probably be a grump all day.  I would have thought I did my penance with grumpy children, but apparently I STILL HAVE A LOT TO LEARN.  Anyway, on to H, next time.

ABCs of Autism - F

F.  First-born.  Anthony is our first born baby, our first son, our first.  Mike and I got married July 31, 2004 and Anthony was born June 10, 2005, so we were new at being married AND new at being parents when Anthony was born.  The other night, Mike and I were talking about it, when he was a baby.  I can't remember why, but Mike said that he thought no matter what, it was all uphill (meaning better - this is always confusing to me) from the beginning, raising kids, because it was so, so hard in the beginning with Anthony.

I remember the night that I went into labor, Mike and I walked over to have dinner near the downtown mall.  We had dinner and then stopped at a bookstore in the mall and I bought Harvey Karp's The Happiest Baby on the Block book.  I had seen him on The View that spring, like when I was home from work for Spring Break or something.  I used to laugh ruefully when I thought how lucky it was that I bought that book the night before I had Anthony.  If I hadn't, where would I have been?  He was so, so ... I hesitate to call him awful but he was AWFUL.  He was yelling so much in the operating room where he was born, this nurse said to him while he was cleaning him off, 'you're just mad at everyone, aren't you?'.  It was awful, he never slept, he nursed so much and for so long and I was all chewed up and everyone and their brother said what a GOOD nurser he was and I'd think, how can this be good?  I have never been so scared.  Seriously, no matter what happened to us after that first week, where I never slept and I was so terrified, it was better than that first week.  So that ended up to be good news, anyway.

Also because he was my first born, I didn't get him into early intervention as soon as I should have.  I am not mad at myself, but I do feel like kind of a dope.  I did ask his doctor at every visit and he'd say, he's so smart, keep reading to him and keep talking to him and he'll be fine.  Mike saw our pediatrician after Anthony was diagnosed and he told Mike that it never occurred to him that he had Autism.  He said his idea of someone with autism was that they were so negative and that Anthony was such a positive person, he just never thought that could be it.

If I could do it over, I'd just call First Steps, our early intervention in Indiana, by myself and not wait for a reference.  I thought I had to get permission or something, but I was wrong.  I am not too mad at myself, like I say, and I don't think it's messed up Anthony terrible that I was six months or one year later than I should have been but if I could do it over again, as I say.  I'd do it differently.

Everyone said, he's such a boy!  He's so physical!  He's so smart, he's fine!  Everyone told me about other kids who didn't talk, Einstein, their own child, their neighbor's child, their cousin's sister's brother's husband's child, blah blah blah on and on.  Ever since Anthony has been diagnosed, a lot of people ask me about their own kids, or a friend's kid or something and I always say this - I think the difference between Anthony's delay, a delay that indicated autism, and a regular old delay, is joint attention.  I remember Mike saying that every kid he knew would look up and point if a plane flew overhead and Anthony never did.  He could not follow directions.  One time my sister Laura was over and I asked him to hand me a bag of chips, he had it in his hand, and we were laughing because he just WOULD NOT do it, it seemed so crazy.  Now, of course, I realize that he seriously couldn't do it.  I bet he could now, actually, but there were years where he could just not follow a simple one step direction.

My advice would be like this, if you think there is a possible delay or something to worry about, call early intervention.  In Indiana, you just have to google First Steps, but if you google early intervention in any state, you should be able to easily contact someone.  It takes a while to get started, especially now that no one has any money, but whatever - it is worth it.  As I tell everyone who asks me, just call, have them come out, the worst they can do is tell you there is nothing to worry about and maybe you wasted your time.  If there is a problem, I tell them, then it's good news because all it's doing is making you right and starting you on the path where you need to be.  It's not like if you never call for an evaluation, it's going to make your child not have a delay, it doesn't make it go away or anything.

I'm proud of Anthony every day, I'm glad he is my first born son.  All I've ever done with him is what every mother does, right?  I've done the best that I can, and I continue to.  I do always get nervous when the subsequent children around around 18 months old, I'm always scared that they are not going to talk (which, I mean, has ended up to be ridiculous, especially with Maria and Veronica), but except for that peccadillo I think we are fine.  Anthony is my first born, my first of FOUR kids (which I still can't believe more than half the time), but those girls love him so much - he is the luckiest big brother I know.

Interrupting the ABC's

Anthony's speech therapist sent me this short video of him working with the iPad yesterday.  He has worked with it for like HOURS at this point, he's doing so, so well.  She pointed out that even though he didn't have to press the "I want" button the second time, because it was already on the top line, he did it exactly right.  It's so dumb but I love to hear that voice!  It's not even his, I am crazy!

ABC's of Autism - E

E.  Eeeeeee.  E.  What to write about for E.  How about expert?

I find there really are no experts when it comes to autism.  I mean, there may be experts in the FIELD of autism, or in sensory issues, or ABA, or occupational therapy or whatever, but I've never met an expert in autism.  I used to say, when Anthony was little, that I didn't know anything about babies but I knew everything about Anthony.  I still feel the same way about autism - I don't know (relatively speaking) anything about autism, but I still do know everything about Anthony.  I mean, EVERYTHING.

Lately, I have been sort of doubting myself because of this insurance/school question.  For a long time, I have been against Anthony going to school, because I think he's not ready.  But then - like today, this morning, this happened.  Mike and Maria left for school and I was getting EVERYONE ELSE IN TOWN READY (bitter, overworked) and I said to Anthony, okay buddy, let's get your socks and shoe and braces on.  This is something Mike always says to him so I was basically just parroting it, kind of planning out loud what I was doing.  And I will be DAMNED if Anthony didn't walk over to this big bucket of shoes that we have in the livingroom and get out his braces!  This afternoon, Janelle (his morning therapist) was telling me how great his listening was today.  She said she'd say things, just off hand, and he'd do them.  Then Pam and Daniel (his old time and new afternoon therapist) said how great he was today - he initiated to go to the bathroom four times, once with the IPAD (!), and Daniel said when they called over the PA "Anthony to the front", he got up and headed toward the door.

So I think maybe I do underestimate him, but I feel like I am just trying to protect us from expecting too much and having our hearts broken.  I guess this is where the experts would come in handy - because an expert wouldn't care about their heart getting broken!  This is why we have to count on people who are not Anthony's mother to get involved.  Mike keeps pointing things out to me that would be good about Anthony being in an education setting.  If he is supposed to use a typewriter type thing to communicate, he'll have to learn to read!  To write!  I'm using so many exclamation points because this didn't really occur to me until he said it.  Maybe together, Mike and I can work with the experts and that will be our best plan of attack.  Because we have to love Anthony enough to do anything for him, but we have to be smart enough, EXPERT enough, to know that if we do everything for him, we are doing just the opposite.

ABC's of Autism - D

I've talked about Anthony's dog, but I'm going to talk about it again, I am so hopeful about it.  Sometimes I think - he is doing so well with the PECS and now the iPad and the program he's using for speech with that, the toilet training has gone well, if slowly, he sleeps pretty well, could it be that we could get a dog and it would help with a lot of other problems?  Could that happen for us, could we have that much good luck?  Of course, the insurance companies of America are around to remind us that we have some bad luck too, so I guess it will all balance out as usual.  I pray every day, several times a day, that we get that dog.

We have filled out an application and it has been accepted by ICAN, the Indiana Canine Assistance Network.  We could wait for two years, or it could be as soon as late fall.  Once we have a dog assigned to us, or chosen for us, we would have to go to two weeks of training at the Indiana Women's Prison - Mike and I and Anthony would go, I guess, although I don't know about that, I'm not sure what we'd do with the other kids.  There's no point in worrying about it until it happens, I guess.  Anyway, that is the general rundown of how it would go.

Meanwhile, we wait.  Anthony is doing really well, as I said, with PECS and his iPad and his general work at Little Star.  We are just plugging away as usual, but sometimes I look on YouTube for good videos about service dogs and autism and I found this one the other day, it's a great story.  I know there is a girl at Anthony's school who has a service dog, she and her family got it through a national program, lord lord it's way more expensive than it would be through ICAN, like TEN TIMES as much. But it seems to be working out really great for her and I'm grateful that she has a dog who is there, it's nice for Anthony to be exposed to a dog and for everyone at his therapy center to be familiar with the concept.

Also, I have friends who have kids with autism who are helped from their regular old dogs, and that is an option too.  I think you can also go places to have your dog trained to help.  There are a lot of options, for us. I think the only option is NOT doing something.

ABC's of Autism - C

Oh, I thought of so many words that start with C!  Like CRAZY, which I am going, all of the time.  Or CRUEL, which is what so many people are to people with autism, which is in this story that I have seen 90,000 times on Facebook, but which I am not reading, because, what is the point?  I have seen enough stories on the news, with teachers and teachers assistants doing stuff to kids with autism in the name of security.  There was the story where a teacher's assistant attempted to give an autistic child a candy with peanuts, because she knew he was allergic and she thought if he had a reaction, he wouldn't go on the scheduled field trip.  Of course, it could have KILLED HIM, too, but I guess she didn't care about that?  That's cruel, right?  Even if he was *horribly* behaved, we can't go around KILLING badly behaved children!  If we could, I would have to put my kids in protective custody, ha!  There is another story, where a teacher was suspended but put back in her job, after she put a child in a chair and then tipped the chair over.  Ay yi yi, on and on, people are jerks!  I know! I don't need to read some letter that some jerk wrote to a neighbor, a family who has a child with autism to know that.

So, anyway, crazy is out, even though I am crazy.  I just tried to lay down to do my stupid 100 situps a day in a vain attempt to get in some kind of decent shape and Felicity sat down right on my face and THEN she dove backward and I had to catch her.  My face still hurts and I am SICK of these two younger girls!  Who in the hell thought it was a good idea for preschool to start WEEKS after regular school?  Anyway.

And probably cruel should be out, because maybe we shouldn't have such negativity, right?  So how about Community?  I have found a nice community of people who know what I am talking about when I talk about Anthony, late toilet training, constant nakedness, ABA therapy, occupational therapy, etc., etc.  Mostly I have found that community online, through other blogs and Twitter but who cares?  It can be challenging, because just like if you know one child with autism, you know one child with autism, if you know one mom of a child with autism, you know ONE mom of a child with autism, but sometimes it's enough.

So here are some blogs that I read regularly, in no particular order:

Stimeyland, We Go With Him, Fragile X Files, Love That Max (I especially like that this blog does a special needs roundup on Fridays, so you can read a lot of other blogs too).  One thing I read right when Anthony was diagnosed was that you should stop reading development books, because they can be really depressing.  I have moaned for years about seeing other kids Anthony's age playing soccer, going to school, making their First Communions, etc., it can be *very* difficult.  I find it's easier to find some people who are in your same situation and start comparing your lives to theirs!  Ha, not really, the devil is comparison, but what I mean is part of reorganizing your standards and expectations is to surround yourself with people who are in the same boat.

And listen.  It is hard, with autism, to find people who are like minded, EXACTLY like minded.  Some people only want to talk about vaccines, some people love and some people hate that stupid Jenny McCarthy (I fall in that latter category, obviously).  But you have to just realize that there are more things you have in common than you don't.  Don't be alone, find a community, wherever that is.  It ends up to be really, really important.

ABC's of Autism - B

B.  B.  Beeeeee.  I'm trying to think of what to talk about for B.  I sort of want to talk about Bowels but I am kind of saving that talk for P, if you know what I mean and I think that you do.  Anyways.  B is for Broken, I guess.

When you get an autism diagnosis, you might be tempted to think that your child is broken.  Your dreams are broken, for sure, right?  I always think about Mike when I see things about kids playing baseball or football or whatever.  Mike loves sports and I do too, and I'm sure we had some dreams about Anthony playing sports or being talented in some athletic way.

But even if our dreams of having a son who plays pee wee football are broken, Anthony is not.  And if those dreams are broken, I guess maybe they were just the wrong dreams!  Anthony has therapists and teachers who love him, and who think he is so smart and wonderful and maybe if he didn't have autism, his teachers would just think he was a regular kid, not the genius that they do.  His highs are so, so high, because they are LIFE CHANGING.  It's like this - Maria and Veronica are toilet trained, they never have accidents any more, and I never think about it.  I don't think they are GENIUSES for figuring out to pee on the toilet, and in fact, I get really mad if they have an accident, I'm like, what the hell?  You can't just wake up and get out of bed and go pee?  Really I have to change these sheets?  But with Anthony, the fact that he just walks into the bathroom and goes is like a MIRACLE, when it happens.  Because I know how hard he is working, how hard he has to work, to know that he has to go and get to the bathroom and know what to do from there.  When Anthony does it, I have a great appreciation for it and I think he is WONDERFUL for doing it.  If he was just a regular eight year old boy, I wouldn't think that.  Everything good that he does, every forward step he takes, I think is WONDERFUL!  So that's good, that's not something that I'd have if he didn't have autism.

I was talking with a friend from preschool the other day, she said her best friend in the whole world has a son who is starting at our public school, in special ed.  He doesn't have autism, this kid, but he has ... is it called mitochondrial disease?  I think so, anyway, he has some profound problems, it sounds like.  She said the boy's speech therapist told the mom that he would never talk if he's not talking by now and I suppose that might be true, like maybe there is something I don't know, but man.  That seems harsh, right?  Anyway, I could see how tortured my friend was, she was trying so hard to be a good friend to her friend, the mom of this boy, and she didn't know what to do.  It almost made me cry, standing there at the park, talking to her, because it took me right back to when we got Anthony's diagnosis, when we had to put him in developmental preschool, and I remembered how scared we were.  It made me think, Mike and I have really come a long way, too.  We have adjusted our dreams and hopes for Anthony so that they are not broken dreams, they're just different.

When Anthony was little and screaming his head off at me, and never sleeping, I remember my mom told me you can't pick your baby, and I think about it a lot.  You can't, and it's a good thing.  If I could pick my baby, maybe I'd pick a firstborn who didn't have autism.  Maybe I'd pick a QUIETER and more RESPECTFUL second child!  I would CERTAINLY pick kids who sleep better, I'd pick for Felicity to have better adenoids and not a bifid uvula or whatever the hell.  But thank God, I am not in charge of every little thing.  Because if I could pick my kids, Anthony wouldn't be Anthony, I wouldn't be able to celebrate all our little victories and know how smart and hard working he is.  Maria wouldn't be Maria, Veronica wouldn't be Veronica and Felicity wouldn't be Felicity. And where would I be then?  I don't even want to know.

ABC's of Autism - A

Today in church, the priest continued his talk about mystics by quoting the great Catherine of Siena, saying "Be who God meant you to be and you will set the world on fire".  And I was thinking, who does God want me to be?  I don't know - I mean, I do know.  I assume God wants me to be Anthony's mother, Mike's wife, Maria, Veronica, Felicity's mother.  Anthony is my first baby and he is definitely the one I will be caring for the longest, he is special needs and high needs  and whatever so I guess I am meant to be his mother, but I already knew that.  So I was thinking, I guess also maybe I'm meant to be the mother of a child with autism, because I am that too.  Today I saw this funny meme on Facebook and it's funny to me, because it's TRUE around here.

Anyway, I had this thought in church.  I have a lot of random thoughts in church because if I try not to think too much about what is happening to me, which is usually that Veronica or Maria are picking at me like a mother monkey, picking and picking and sometimes flopping in my lap or sometimes pulling up my clothes to 'see if I have a shirt on underneath my shirt'.  So, I was TRYING to concentrate on the homily but it was hard and eventually I was thinking, who does God want me to be?  I want to set the world on fire!  Anything would be better than this nonsense, being picked at and undressed in public.

So I thought I'd make this list of What I Know About Autism.  When Anthony was first diagnosed, I relied a lot on the Internet for camaraderie and I was always grateful to find it.  So maybe someone would be searching for some information, some real life information about autism, and maybe I could help them.  And maybe then I will be setting the world on fire!  We'll see.  I'm no Catherine of Siena, I am merely Joanne from Mt. Hope.

So.  A.  Anthony starts with A, Autism, ABA therapy.  I think I'll do ABA therapy.  Anthony goes to an ABA therapy center, meaning that he is in ABA therapy.  He is prescribed 40 hours per week of ABA therapy by his developmental pediatrician.  It's covered by insurance (in our case, although of course the insurance companies (scumbags) do NOT want to cover it but it should be covered by everyone) because it is a Surgeon General approved therapy for kids with autism.  Some, but not all, of Anthony's therapists have BCBA degrees.  BCBA stands for Board Certified Behavior Analysts.  Some of his Program Managers and some Directors at the center are certified as Masters or PhDs, too.

ABA stands for Applied Behavior Analysis, it used to be called Behavior Modification.  It is defined as a system of autism treatment (it's used for other treatment but mostly autism) based on behaviorist theories which, simply put, state that behaviors can be taught through a system of rewards and consequences.

Anthony has been going to his therapy center since August?  September?  I can't remember but let's say August of 2009.  I remember because I was pregnant with Veronica when we went in to look at the place and also because she was a screaming MESS the whole way driving home.  We lived about 45 minutes away at the time and Oh, LORD It was AWFUL!  AWFUL!  Anyways, so it's been four years.  Before we found about it, Anthony was on the track to go to our local public school.  It was fine for developmental preschool but I was really worried about him going there as he got older.  He got pulled out of preschool for occupational and speech therapy and I liked that he got that, I liked most of his therapists.  But it definitely had a warehouse feel, I felt like they were just pushing kids through school and they would always talk at IEP meetings about how he was entitled to go to school under he turned 21 and then he'd get a certificate or something, you know, NOT a diploma.  UGH it was depressing.  I'm sure it's not true that the school was just warehousing special ed students, it just really felt that way in the beginning.

Anthony has come a long way, he is nearly toilet trained, he follows directions in a way that he never could before.  He has had some wonderful, loving therapists who I think really care about him.  They really respond to my questions and requests in a great way at his center.  There are only a few cons that I have with his ABA center.  One is that it's unbelievably expensive, we couldn't do it without insurance.  Mike's employer is self funded (the US government, ha ha boo hoo) so his insurance doesn't cover ABA therapy but Anthony has his own policy and that covers it.  Before we knew that would be possible, we were going to have to remortgage the house or get a line of credit or something.  The other con is that I am a big believer in acknowledging Anthony's many sensory processing issues and they are not, so much.  ABA is science-based, and I feel like they see OT and Anthony's sensory problems as kind of NOT science based.  One thing they worry about is the fact that there's no data on whether wearing a pressure vest actually HELPS a child with autism and sensory processing disorder.  But I think, as a parent, WHO CARES?  If he is happier wearing a pressure vest, if he sleeps better with a weighted blanket, who cares?  Why can't we just do it?  Anyway.  That is my one very small issue with my experience with ABA, but I think I'm like that because Anthony's sensory issues are so profound.

Anyway.  So that's A.  I am hoping to do a letter a day and be finished in less than four weeks but Lord only knows. I want to post more about Anthony, so much is going on, and maybe this is a good way to do it.