Friday, December 06, 2013

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.  :)

Tuesday, October 22, 2013

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!


Tuesday, October 08, 2013

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.
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.  



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!


Thursday, August 29, 2013

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.




Sunday, August 25, 2013

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.


Saturday, August 24, 2013

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!

video

Thursday, August 22, 2013

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.

Tuesday, August 20, 2013

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.

Monday, August 19, 2013

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.


Sunday, August 18, 2013

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.


Tuesday, August 13, 2013

Update

Well, in door/window news, Anthony had a major, major breakthrough today using the iPad and ProLoQuo, which is an assisted communication device, a talking device.  The first day his speech therapist showed it to him, he started using it.  It's very exciting.  I am so hopeful and excited about him, and I swear he seems excited too.  Wouldn't it be funny if he were just waiting for us to figure it out so he could talk to us?  It's too much to think about, too exciting.

We are making progress on our appeal, talking to the school system, waiting to hear from Anthony's doctor, etc.  I am once again bullish for the future.


Tuesday, August 06, 2013

Insurance

I have been wanting to do this Just Write thing for a while and Im going to try it tonight.  The one thing you should know about me is that the damned apostrophe on my keyboard is broken, some KID broke it, and I am MAD but the thought of taking it in to the Apple store makes me want to cry so for now, no apostrophes.


  • Anthony had a great day today at school.  He had no accidents in the morning, or the afternoon, he wore his braces for most of the day.  We came home and got changed and he TRIED to poop on the floor but I caught him and he went on the potty instead.  So, um, win?  I guess?  Then we went to OT and he was upset at first, but she calmed him down by rolling a ball on him as he lay down on the floor.  She had to put a lot pressure on his back but he loved it and calmed right down and could focus on what theyre working on, which is scanning and choosing the right object from a group of two or three objects.  
  • BUT his program manager called me today and said that the Clinical Director, I think thats his title, wanted to meet with both of us, both me and Mike, and when would be a good time for us to both come in.  Um, never?  I said that Mike would be there tomorrow to drop off Anthony and he could just meet with him then.  She asked wasnt there any way that we could both go?  I said maybe you better tell me what this is about.  I thought maybe they were kicking him out or something.  But she said they were just wanted to share with us some information about how Anthonys insurance company, um, didnt want to pay for 40 hours more a week of Anthonys ABA therapy.  
  • VERY annoying.  Even though we take him to see his developmental pediatrician TWICE a year to say that he STILL has autism, even though he does in fact, still have autism, and have it kind of BAD, it doesnt matter.  The INSURANCE COMPANY has decided that they no longer want to PAY for Anthony to get the therapy that he is PRESCRIBED by a DOCTOR.  I asked his program manager, what of the prescription that his doctor has given?  She said the insurance company has a GROUP of EXPERTS, although not MEDICAL DOCTORS, and they would decide.  The thing is, they decide for EVERYONE that what they dont need is FORTY HOURS a week of ABA therapy.  Isnt that a coincidence?  
  • They want him to transition to the free and public education that is made available to him.  Every time we have met with that school system, they have NEVER indicated that he could go to school twenty hours a week.  I had to fight like a NINJA to get him to go to Kindergarten in the morning one time a week, remember?  But thats what we are supposed to do.  We are supposed to start the transition for Anthony to go to school 20 hours a week and go to Little Star 20 hours a week.  How is that supposed to happen?  Is he just going to go into the third grade?  What about the bathroom?  The bus?  Are all the doors locked or will he have a one on one person to help him not bolt out of the door and into the street?  
  • My guess is that there arent any answers for this.  We are going to have to go to a million meetings and then what we will end up with is something that is good for exactly NO ONE except the insurance company. We can just keep paying Anthem hundreds of dollars a month and they can just ignore the autism mandate and ignore what Anthony needs and we are just supposed to do what they say.  
  • I dont even know.  And you know what else?  Why are we meeting with the RESEARCH AND TRAINING DIRECTOR?  Why is he the one with whom we are discussing insurance?
  • Why arent they sticking up for us, for Anthony, more?  Im afraid its because we dont pay enough.  I cant even think about it too much.  I have been post phone call for like 9 hours and I am going crazy.  
  • So I guess Mike will go to the meeting and find out whats what and we will appeal and whatever else.  We have two months that he can go full time.  TWO MONTHS.  I feel like all of this happens with no notice to us.  We get letters over holiday weekends, now we have two months to figure this out.  
  • I cant believe this is supposed to be better for us, for our country.  We have insurance - we have insurance as a family, for which we PAY and we have insurance for Anthony, for which we pay, too.  What the hell?  
  • Anyway, just like everything else, Im going to pray on it.  I pray that we will not be abandoned but, and this is not for the first time, but its the first time in a while, I feel like its not going to work.  I feel like we are all alone.  

Sunday, July 28, 2013

Seven Things for Sunday

I'm going to say seven things that are true, this week, about Anthony.


  • Never ending toilet training is going very, very well at school but he's had some bad days there recently and he's had at least one day a weekend here that has straight up stunk.  And I do mean stunk, this morning Mike was at church and Maria came down and said I was in my room and something smelled and there is POOP on the FLOOR!  When I look at the big picture, I know how great it is that he's doing so well but it's daunting.  
  • We have to start putting Anthony in his braces again, after a break because he had a growth spurt and couldn't wear his old ones and then we had to wait a while to have his new ones made.  It is just infuriating to get them - they cost $497 and our deductible for devices is $500 (ha ha boo hoo what a coincidence) and it's like TEN CENTS of material and in fact, the straps broke not once but twice the first two days he tried them and Mike had to go back and get them fixed twice.  Annoying!
  • He needs a haircut and I am dreading it.  
  • He and Felicity have been playing together a lot - not because they choose to but because they have common interest and also, she kind of leaves him alone and he likes that.  Here's a picture of them in the bounce house today.  
  • He has been sleeping well but it's spotty - he sometimes is super tired, like if he goes to a pool or splash park with school, and then he falls asleep early and wakes up early and he's very loud and obnoxious and we have to go get him.  But overall, things are fine in that department.  
  • He's so big and tall lately, it makes me think of him being a teenager.  I'm so scared.  I can't believe how I always want everyone to get grown up except him.  I want him to stay little and controllable.  But that's not fair, I suppose, to him, so I am trying to get over it.  
  • He's doing very well with his new OT, I like her a lot.  This week I had to get my exercise in and I asked her if I could go out while she was working with him and she said SURE, she said, she has another mom who always goes and exercises and sometimes she does yoga in another room if the weather is bad.  So I just walked a loop for 30 minutes and it was nice.  I don't mind at all listening to him, or rather not listening to him because he is usually very quiet and happy with her, but it was nice to have a break from it too and get something accomplished.  
Onward to this week!  Wish us luck and I am still asking for prayers that we get his dog sooner rather than later.  


Monday, July 22, 2013

What it's Like to Have an Autistic Brother

This video!  My friend Eileen, my friend from high school, sent me this on Facebook and I just love it.  I love this kid and his voice.  The brother reminds me of Anthony, he has similar mannerisms.  I hope and pray so many things for Anthony - I hope he survives his childhood, I hope he doesn't learn to climb the damn fence and drop six feet, I hope he gets to be 100% toilet trained, I hope he learns to communicate and alleviate some frustration from his life.  I hope he can learn a little bit more so that he can someday write and type and express himself.

But I also hope that Maria and Anthony could have this kind of relationship, or Anthony and Veronica or maybe even far apart Anthony and Felicity.  I know those girls love him so much, and I know he loves and is intrigued by them but eventually the girls are going to want more, right?  I don't know, I never had a brother like Anthony, I don't know what's going to happen.  But I know that there is a reason that Anthony has three sisters and I hope that reason is because they are going to love him and care for him.

Anyway, this video is so nice and SO much better than certain Ted Talks with certain spoiled selfish siblings talking about how horrible their life was with their autistic brother.  It's really beautiful and it fills me with hope.  I look at that kid sitting with his brother at Dunkin Donuts, standing on the beach, not climbing on tables, not running into the surf, and I think maybe.  Maybe some day Anthony will slow the hell down and not always be climbing on tables, running away from us, maybe.  I know I am hanging a lot of hope on this dog working out but I am going to continue to hope that that is a thing that happens for us.  I have been on the lookout for so long I am starting (?) to get sort of weird.  I would love to relax a little, I'd love for him to relax a little bit.  I am asking for prayers and hope that we get a dog for Anthony sooner rather than later.  I am wracked with guilt that I didn't do the application sooner.

My wrapping it up skills are wanting, I know, so I'll post a link to the great video again.  Here!  Go watch it!  Bring tissues!

Friday, July 12, 2013

Something

 Isn't he something?  I'm just going through this CD of pictures that they sent him from his camp and I found this one.  He looks like the girls here, and I think it's because he's making a face, he looks like ... I don't want to say normal but he looks normal to me.  Maybe he looks like the Anthony of my Dreams or something.  That's weird and wrong, because he already is the Anthony of my Dreams but I mean, he looks like a regular little kid, maybe feeling a little self conscious because he's wearing a helmut?  He's so cute. 

Friday, June 28, 2013

First Week at Camp Ability

Anthony is finishing his first week of Camp today, it's gone so great.  His therapist Janelle, who is with him this week, said yesterday that if today went well we could consider it a great week.  I said I think no matter what happens today we'd have to consider it a great week.  Here's why:


  • he's been outside a lot this week and even though it's been hot, it hasn't been dangerously hot.  He's gotten a lot of fresh air and sunshine and he wears a ton of sunscreen, so he doesn't have a sunburn or tan but he has a lot of cute freckles.  
  • this should probably be number one but his toileting has been AMAZING, he's had ONE accident, and that was only because the toilet was too far away.  He told his therapist he had to go, but they just didn't make it in time.  Since the same thing happened to Maria this week, I am calling it a normal camp mistake, ha!  When I think about the fact that two years ago, Anthony was in diapers and never thought one time about not going in them, I want to fall on the floor and cry with gratitude.  
  • he's been so happy to come home - he rings the doorbell every afternoon when they get here, and he walks around the house, he might go outside and check out the yard, but he checks in with me and will force eye contact and then laugh or smile.  I have been going to get him for four years at Little Star, and I think we are all grateful to have a little change up to the routine.  
  • He's going swimming every day, they have a bunch of small pools, I guess, and he really loves it.  
  • Janelle, his therapist, brings him home every day and it's been nice to talk to her a little bit.  She is his morning therapist and since Mike always takes him in the morning, I never get to talk to her.  On Monday, we walked around the house and I showed her the backyard, where we have the bounce house, playset, trampoline, pool, etc.  She said it was nice to see him in his natural habitat, ha!  
  • For the second year in a row, Anthony went horseback riding and it went just great.  I'll put some pictures below, they are amazing, right?  I could not stop crying yesterday looking at them.  She said the one of him petting the horse was her favorite, because it took him a little while to do it and then he really seemed happy that he did.  
  • I know he must get tired of working so much, and even though it's kind of a busman's holiday, he seems really happy to just be playing and having fun.  I'm so glad that we're doing this, I'm grateful to Little Star for sending a therapist with him, and for Janelle being so plucky and willing to GO with him, and I can't wait until next year!  

Sunday, June 09, 2013

(Yes) ICAN

Last week we went to our interview about Anthony's helper dog.  It was on Thursday and it was such a busy day, of course.  The girls had their last day of Vacation Bible School, and we wanted to do the interview in the morning so Anthony wouldn't miss much school.  Anyways, Mike and Anthony went to the meeting for 9:00 and Felicity and I dropped off the girls at VBS and met the boys there.  The meeting was in a big, giant, empty room, save for a few chairs and a table.  The idea was, I guess, that Anthony would just act like Anthony so they could get a clear idea of who he was.  Ha ha boo hoo, I guess he wanted to show them everything because of course he pooped while we were there!  Anyways, the woman was so nice, so reassuring.  We are always following Anthony around, making sure he doesn't break anything or whatever and the woman basically told us that he wasn't going to do anything that she hadn't seen before, and the point was to SEE him, so sit down, ha!

Of course I cried during the interview.  I mean, I am not an ugly, loud crier, like Bradley Cooper or something, but still, it's embarrassing that tears are sort of running down my face for more than half my life.  It just - it sounds so GOOD, it sounds like something that could change our lives and I mean, I hate to be mean, but our lives could use some changing.  We spend so much of our time scared of what is happening with Anthony, will he fall down off something, will he POOP on something, at some point are our neighbors going to get sick of seeing his naked ass in the yard?  Mostly, of course, we are scared of him running away.  This woman was blithely saying, we can train the dog to bark every time Anthony gets near the door, and we can play a game called "Where's Anthony?" with the dog, so that the dog can always find Anthony.  And then - and this is the part that really made me cry - I was saying that Anthony has such sensory issues, that he is so tense, and she said that they could train the dog to HUG Anthony and oh jeez louise.  I am crying now, thinking of it!  I mean, that would really be a dream come true, to think of Anthony having a buddy and a friend, and he could just pet the dog and then his oxytocin levels would raise and um, it was just too much.

The bad news is that it could be a long wait.  It could be THREE or FOUR years, which is too much and I mean, who even knows what he'll need in three years.  But it could be as soon as November and I am just going to pray that that's how it happens for us.  A lot of crappy things have happened to us over the last several years, so I am just going to expect that finally a good thing will happen that we really need.  I would appreciate any and all prayers and good thoughts that it will all work out.


Friday, May 31, 2013

Five for Friday - On Friday!




  1. Anthony is supposed to go for a field trip today to a park but it's pretty rainy so I don't know if he'll go.  I almost hope he doesn't, because he didn't have any clean shorts so he had to wear sweat pants.  I swear if I don't do laundry for ONE DAY, and PLENTY of it, we are behind.  
  2. He switched therapists this week.  He is supposed to switch every 12 weeks but this has been like seven months with his afternoon therapist.  He'll miss her and I know she'll miss him too.  It's hard, he has so many changes and he really doesn't seem to care but how do I know unless he starts to freak out?  
  3. We are finished with art class.  I am hoping to find something else this summer that he can do, something more like swimming or horseback riding.  Everything is so expensive and/or daunting, insurance company wise, I hate to do it.  We got a letter this week from Mike's insurance company, demanding to know if we have other insurance, and reminding us that we have to TELL THEM if we do!  Go to hell, I think.  Mike has been contributing to his insurance for 18 years or whatever the hell, they don't even cover Anthony's ABA, shut up.  Jerks.  
  4. Anthony is doing very well with the potty stuff - my mom was here with him yesterday, I had taken the girls to Maria's tap recital and Mike was coming home a little late to take Anthony to swimming.  My mom said he just seemed a little funny, so she asked him to go to the potty and he did, he pooped and peed on the potty!  So exciting. 
  5. What else.  Oh, he has two weeks off at Christmas and I am mad about it.  Last year they just had off on like Christmas eve and Christmas and then the weekend and then the same for New Year's Eve/Day, but this year they have the whole damned time off.  It makes me mad because that is guaranteed to be not just bad but horrible for all of us, and there is nowhere to go  because everywhere will be really crazy and crowded because EVERYONE will be on break.  Also, it's wintertime so we could conceivably have off for snow days right around then.  It's awful to have so much of your life under someone else's control. 

Saturday, May 25, 2013

Flowers II

 These flowers are from my cousin Wendy and her husband Curt.  It's a big deal, right, 50 years?  FIFTY YEARS!  My mom says it doesn't feel like 50 years but man.  FIFTY years.  Anyways, the flowers are beautiful and really cheer up their house.
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Flowers

 Here are the flowers my aunts and uncles sent to my parents for their 50th wedding anniversary, aren't they pretty?  I wanted my Aunt Joan to be able to see them.
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Friday, May 17, 2013

BIG MOMENT

I have to write this down and I have to record what has happened.  I know that it's super lame, especially because it's FRIDAY NIGHT and this is what I'm doing, but I have to have a record AND I'm really, really happy and proud.

Tonight Anthony got home from school and he hung out for a while, then at one point he went upstairs and I followed him, because we didn't know if the doors were open or whatever.  Normally, we'd just let him go outside and run around, but it was pouring down rain.  ANYWAY.

So I went upstairs and he was lying in Maria's bed.  I said, come on let's go downstairs, and he got up and went into Felicity's room.  I shooed him out of there and then he was kind of pulling on the railing, making me nervous, so I said hey, let's go downstairs.  He went downstairs, but backward and I was facing forward, so it was kind of hair-raising but we made it with no one falling.

SO.  We kind of wound our way around toward the kitchen and the bathroom and then ANTHONY HANDED ME THE 'BATHROOM' ICON AND WENT IN TO THE BATHROOM AND POOPED ON THE TOILET.  That's RIGHT!

Ooh it was exciting!  I said yay, Anthony!  Maria came running in to look at the poop and she said, barely able to contain her excitement, HE IS POOPING MORE AND AGAIN!  Once again, as always, I am glad we don't live in an apartment, ha!

He was so proud and happy.  It was an amazing experience.  He is also doing a thing where he screams and screams, just to feel it or hear it or whatever and THAT is driving us mad, but I am going to dine out for a LONG time on this poop. Eww.  You know what I mean.

Wednesday, May 15, 2013

Occupational Therapy vs. (?) Applied Behavior Analysis

I don't really think OT and ABA have to be at odds, but it feels like it sometimes.  In four years that Anthony has been at Little Star, he's also gotten OT for maybe ... three years of that time?  Maybe two, I'd have to go back into my files (that do not exist) and find out, so let's say 2.5 years.  I think he does much, much better when he is in OT as well as ABA.  I think the perfect combination was about one year ago, when there was an OT at his school, one who worked with the ABA therapists and also with Anthony.  That OT is the one who recommended that we have Anthony see someone about getting him into some leg braces, she was a wonderful resource.  Of course, now she's not there anymore, there's a part time OT but he sees a lot of kids and it's just not the same.  I don't hold anyone accountable for that, it's just the way it is - the insurance company cut Anthony's school's reimbursement by 20%, which STILL makes me mad but whatever, that's not even as bad as it's going to get, I'm guessing, so I am saving my ire for when it really counts.

Anyway, when I approached Anthony's school about him getting OT outside of school hours, billable hours, I felt some pushback.  One of the reasons was because Anthony is prescribed 40 hours of ABA a week, and they have to charge for all that to stay on track, so he can't have an OT come in during the time that he should be doing ABA, because what would the ABA therapist do while he was getting OT?  This is a good point, I feel, but it still left me kind of stranded when it came to getting him some OT on a regular basis.  I found a place that does OT and that has evening hours.  He now sees an OT on Tuesday nights at 6:00 - this is perfect because I never work on Tuesdays, so I can take him and sit in the waiting room for 50 minutes by my damn self and it's just great.

I went last night and he did very well.  I could hear him - or I should say I *couldn't* hear him, for most of it, which tells me that he is content and doesn't need to hoot and holler to stim vocally.  Amy, his therapist, told me that he picked out colors when she asked him to and she said she should have known that he knew his colors, but it surprised her for a minute.  I said he knows everything and she laughed.  I said I know it sounds silly but he does - I feel like he knows everything he's ever been taught.  When he was Felicity's age, he knew how to count to 20, his colors, all animals, his alphabet, just everything. Felicity only knows Max and Ruby but because of some different wiring, SHE is going to be fine and he struggles and struggles.  It's such BS.

Anyways, I think this is an interesting link, which describes the differences between OT and ABA, and which talks about what they ARE and what they ARE NOT.  One of the most interesting things is that Occupational Therapy is not a new phenomenon - it's over 100 years old.  I think that might be interesting to people who are in their 20's and who think OT is some kind of magic voodoo or something, that there's no science behind it.  Not that I know anyone who thinks that, ha!

Sunday, May 12, 2013

Video

Here's a video of Anthony, from yesterday.  I watch it over and over and try and figure him out but I don't think I ever will.  Why does he move his head like that?  He is watching the Wiggles here, which is the only reason I think he's sitting as still as he is.  He moves a lot, it's one of the reasons I think it's been so hard for him to get a lot out of his art class.  I imagine it's hard for lots of seven or eight year olds to sit still for 90 minutes but man, he needs more and more breaks every week.

Today we had a little party for Veronica, she'll be four on Tuesday.  It went fine and we just had our parents and my sister and a friend of mine and her kids and Anthony just lost his mind, a little before 5:00.  He was absolutely inconsolable, screaming and crying, and basically, I guess, having a meltdown, like he used to.  I hate to think that it's starting again.  I guess we just have to take one day at a time, but if anyone was ever reading this and thought they had anything for us to try, I'd listen.  I'd listen a LOT.

Friday, May 10, 2013

Five for Friday


  • Anthony had a good week, he went to school every day, he did well at school.  He is 'testing out' of a lot of stuff, which is good but I'm not sure exactly what it means.  Yesterday his afternoon therapist said how well he did yesterday and she said said, I mean, of course he did.  He's a genius.  He really is.  
  • Here's an article about how kids with autism see, basically it's NOT LIKE WE DO.  I feel bad about my lack of knowledge about how Anthony sees, if his sight is okay, if anything I do bugs him.  I don't know what to do about it, though.  
  • I got Anthony all signed up for his summer camp this week.  He's going to go the week before and the week of July 4.  I'm glad it's all set up.  
  • He went to the dentist, did I say?  I may have, it was last week, but I am too lazy and squished by Felicity on my left arm to look.  He had no cavities.  
  • He'll be eight years old next month, one month from today.  EIGHT!  

Tuesday, April 30, 2013

New OT - Evaluation

So Anthony is going to start with a new OT soon, but every time you start with a new therapist (OT is occupational therapist, sorry), they have to do an evaluation and because they are not doctors, they have to have Anthony's doctor sign the prescription for it.  Anyway, they send me a copy of his evaluation and it's so depressing.  I mean, how old will he be, how long will I know all I know, before it doesn't bug me so much that they write this stuff down about him?  It's one thing to live your life, and another thing entirely for people to talk about it, or heaven forbid, write it down.  It feels so different.

Anyways.  It says his tone is hypotonic, which means he has low muscle tone.  That's probably because he doesn't use his body like he should, I guess?  There are 10 "underlying impairments" in which he is "moderately impaired" and just one that he is "severely impaired".  He's severely impaired when it comes to Left Right Discrimination.  There is something funky with his vision, I know, but I will be damned if I can figure out what we'll do about it.

Anyway, he has year long-goals, so that's good.  There are many good things about starting with this new OT.  I really liked her, she's been at OT for 20 years, the office is very close to our house, they have appointments in the evenings, it's one more thing to do with just Anthony.  It will be good but it's hard to read, every time, all the things that they think are wrong with my sweet baby.

Monday, April 29, 2013

Five Things

Okay, I started this on Friday!  I'm determined to do Anthony's Five Things (for Friday) and Maria's and then I'll be caught up.

1.  We went to art class again this week, he has not had a bad time like he did the second week again, but I wouldn't say he loves it.  He doesn't love all that sitting!  This week we took a lot of breaks and jumped up and down.  I have to say something about the art teachers - that is probably not the right title.  They are art teachers but they are also like Master Artists or something so I don't mean anything bad against them but they are Anthony's art teachers and I know that for sure, so that's what I'll say.  Anyway, they are so nice.  I appreciate them so much, they are patient and talented but mostly they are KIND.  The clay teacher always signs to Anthony and even though she never asked if he used signs, she makes the effort and I appreciate it and I bet Anthony does too, even though he maybe doesn't show it, ha!  The art teacher doesn't even blink, really, when we get up and jump around or Anthony tries to drink the paint.  They are so nice and beyond welcoming.  If you know anyone who would benefit from a community type class, you should look it up at Very Special Arts of Indiana.

2.  What else.  Anthony gets a note home every day, saying what he did, how he did toilet wise, if he needs any supplies, etc. Last week one of his therapists said that when he was waving BYE to someone he said "peace out".  Is that possible?  I want to investigate further, I mean I know they don't LIE, but ... peace out?  Anthony?

3.  I hate the movie Forrest Gump. I mean, I hate it a LOT and I really hated the book - Forrest goes to space with a monkey in the book, what the hell?  It's been on a lot lately and I find myself loving it, loving that Forrest Gump.  I love the thought that even though nobody had any faith in him ever being anything, his mother believed in him and he had such a great life.  Ugh, Anthony - making me love FORREST GUMP!

4.  Anthony had such a crappy morning yesterday that we brought the bounce house inside!  It's been cold and or rainy for months and now it's getting warmer but it's so muddy!  So anyway, he liked it, I think.  He still had a not-great day but it was better than it would have been, I bet.

5.  He went swimming at the Monon Center the other day, with school, and he loved it.  She said he went down the slide a lot.  I am hoping this summer to be able to take him to a not super busy Y around here and go to open swim sometime.  He loves it a lot and while I don't wish we had a pool, I am going to try to get him to a not-crowded-and-therefore-complicated pool more often this summer so he can do something he likes.

6.  (BONUS!) He should be starting with a new OT soon.  I am praying he can go on Tuesday nights at 6:00 so it doesn't affect my work schedule but we'll see.  I think it's going to be really good for him, I'll keep you all posted.

Wednesday, April 17, 2013

Thought: What's in a Name?

This week, I read a Signing Time story, written by a woman who was the mother of a son with autism. Her son sounded a lot like Anthony, never much of a talker, everyone said it was because he was so physically sound, such a boy, first born, blah blah blah, etc.  So she had him diagnosed with autism when he was around three and then they started using Signing Time and then he got good at it and then he signed MOMMY and then, finally, her little boy was BACK.  I shared it on Facebook and said that while I love Signing Time and that it's been great for not just Anthony but all the kids, I don't like the myth pervaded around the internet and the world that somehow because your child is not talking to you, indeed not communicating well with you, that he is somehow LOST or GONE.  I feel it is a) not true and b) hurtful to all children who don't communicate well - if you think your child is not there and has to come back because they are not communicating with you, I fear that other people will think that MY son isn't there, and if he isn't there, where is he?  and also c) some kids of parents are really gone and I think it's disingenuous and cruel to act like your child is gone when they are, in fact, RIGHT THERE.  It's up to me, as Anthony's mother and advocate, to figure out a way to communicate with him and to teach him a way to communicate with me.

That teaching takes all kinds of forms - Anthony is working with PECS, he is a ROCK STAR with PECS, to quote his speech and ABA therapists, and before long I have no doubt that he will be using some kind of communication device to use to talk to us.  Sometimes we have to ignore him to teach him what bad communication is.  He is driving us BONKERS with this pulling on us, it is annoying in the immediate way because he is tearing our clothes, breaking my favorite necklace, etc.  But it's also annoying and scary in a less immediate way because of course it worries us.  Anyway, when Anthony has a tantrum or pulls on us or something, we have to ignore him so that he doesn't think that THAT is the way to communicate with us.  It's hard to keep up with and it can be hard to ignore because he is pulling on our clothes and scaring us about our future.  But we persist, and it's getting better, so that's good.

One thing this woman said in her Signing Time story, and something else I see a LOT in Autism circles, is that she wanted her son to call her Mommy.  He had never called her Mommy, she said and then finally he learned how to sign Mommy and he signed it and it was just great, just amazing, how he called her Mommy.  This morning I was taking Maria and Veronica to school and Felicity was sitting in her car seat behind me, kind of moaning, "Mommy.  Mooooommmmmmmyyyyy.  MOOOOOOMMMMMMMMMMYYYYYY!" and I was thinking, ugh, why did I ever want someone to call me Mommy?  No one ever uses it in the sweet way that I imagine they would.  It's always accusatory - Mommy!  Where are my shoes?  MOMMY!  I want a chocolate waffle!  MOMMY!  You forgot to (insert transgression here)!".  I was thinking about this woman who wanted to be called Mommy so badly, and I was thinking of how often I have thought that too, if he could only say Mommy.  If he could only say I love you.

But I think it's folly - I am his mother, he knows it and I know it.  I know he loves me.  He knows I love him, because I say it all the time.  I say I love you, and I'll take care of you, and I'm proud of you, I say everything to him, because I can.  But he can't.  And I was thinking, it's not so much that we want these kids to say Mommy, to say I love you, because we know it.  What we want when we moan about our kids saying Mommy is not so much that we want them to say Mommy, but we want them to be the kind of children who CAN say Mommy.  Anthony can't say Mommy, not easily.  He certainly doesn't seem to be able to call me, to call "Mommy?" if I'm not there, he never could.  I wish SO MUCH that he could do it, even just logistically it would make our lives easier if he had to go to the bathroom and could call me.  Or if he was scared in the night and needed me, and he could say "Mommy!  I am scared and I need you!", that would be great.  But he can't, not right now.  And I just feel like to constantly be going on and on about it is kind of wishing away who he is and I can't do that.  I always think about that book that I read about bright children who talk late, The Einstein Syndrome.  In it, the author says that this little girl who spoke late's first words were "I'm sorry" because for years all she had heard was her parents begging her to talk.  I read that years ago and I swore then that I wouldn't do that, that I wouldn't make Anthony feel bad by asking him to do something he can't do.  It's a tricky proposition, because of course we want Anthony to work hard so that he can learn to communicate and to live in the world, but to want him to use all that energy to say Mommy?  Not, like, ROSEBUD or something, but just Mommy?  When I know and he knows that I'm his mother?  That is some sort of poppycock that I'm not willing to worry about.