One More Thing

This blog post is great, isn't it? It is being lauded on Twitter as an antidote to the mean lady posting, and it totally works for me. People can be really nice and kind, I suppose. I am hopeful that maybe if I am one of those people, maybe I will start meeting more of my own kind, ha! It does not come naturally to me, but I am working on it. :)

Admission

I was just reading this excellent post and thinking about a time, years ago, when I may have been a jerk to a kid with Autism. I may not have been, he could have just been a kid misbehaving in church, but he may have had Autism.

When I was about 19 or 20, my sister and I went to Mass at this church that we didn't really like, but that was in our town. It was kind of Folksy Massy Catholic, and that is not our thing. There was a family in front of us and this boy was playing with change, slapping quarters together, and his mom was not even paying attention. I leaned over, after what felt like a long time, and said "could you stop doing that? You are driving me crazy!". The mom, at the handshake of peace, said to me, "you know, I'm going to forgive you". I feel confident I said something like "big deal" or something as snotty.

I know! I know I was in church! It's awful, and I haven't thought of it in years. It recently came back to me, and I was gripped with fear that that boy had Autism. I'll never know, I hope he didn't, I hope he was just a bad kid whose mom wasn't paying attention. But he probably wasn't, and who cares if he was? I never should have said that. It never occurred to me, just the same as it probably doesn't occur to people that Anthony has Autism, that there is an explanation to his whacky behavior.

Anthony is super noisy. SUPER. NOISY. He is a bray-er. It's like instead of flapping his hands to stim, he's flapping his vocal chords. It's NOISY. He is upstairs right now, yelling away, when he should think about going to sleep. We don't take him to church, and haven't for years. The last time he was there was Maria's baptism, when he was 2.5, and he was pretty bad then.

He is less impulsive than he was 2 years ago, and I think maybe he could sit for a while and not dart out up the aisle, but he's so noisy. I take Veronica to church and I take her to the back when she is just babbling loudly, and he is like ten times as noisy! So, no church for him, yet. There's a woman whom I sit near in church who is always telling me I should bring ALL my kids to church. She's funny, one time she told me that people are going to think every time I have a new baby, I just get rid of the old one. I just don't want to get into it, though, because I know she'd feel bad if I said "my son has Autism and he's super noisy and I can't bring him". Plus I might cry when I said it, because sometimes I still cry when I say Anthony has Autism. Even though it's been two years! Sometimes I practice saying it first, when I know I'm going to have to.

Anyway. This woman, who wrote about the little girl who was so badly behaved, the girl who wanted to make her jam a pen in her eye, isn't really a bad person, I'm sure. I'm sure she's embarrassed and feels badly about what's happened. But I wish that she and people like her would just look alive, man. It is all over the news that a lot of kids have Autism now, more than ever before! Epidemic! Jenny McCarthy! Parenthood! They're everywhere! Even a jerkstore like I was would NOT have said anything to that child in church if it hadn't been 20 years ago. I hope, anyway.

When we were little and my brother was sick and would get stared at, I would always stare back at people, I would confront them and try and make them feel bad. Now, though, I don't want to make anyone feel bad for feeling bad about Anthony, or me as his mother. I just don't want it to happen. I don't want anyone to judge little Anthony, believe me, he would have NO idea that it was happening, but I still don't want it. We stay home a lot, but I think maybe it's more for me than for him.

Fresh Hell

Anthony isn't toilet trained, he is not even close, actually. His developmental pediatrician told us that with sensory issues like he has, it will really be Anthony's choice when to start training. He said that Anthony won't model his behavior after ours. He'll be five in June and I am constantly on the lookout for signs that he is ready to start some kind of training. Since he's been in school, they have been working on a program with him and we do it too - he gets his own diaper (at school, we are lazy and just get it ourselves), has to pull up his own pants, throw away his diaper, just be more responsible for the whole thing.

Lately, Anthony has been taking off his diaper and it is driving me mad. Twice we've gone in in the morning and found him bare assed, and super wet. We have to strip his bed and get him cleaned up, which is bad enough, but I also FEEL bad, I feel bad that we are leaving him in there all night, all wet. So, I've started checking on him when I go to sleep and making sure that I don't see his pajama pants laying around. Last night he was up LATE, it was almost 10:00 when I went up and I checked on him and not only were his pajama pants on the floor, but so was his diaper, shredded into about a billion pieces. He was lying on his bed, with all those diaper remnants everywhere around him. I called Mike to help me and we brushed off his bed, swept the floor, got him re-dressed and said Good Night. "Good night", he answered. I said "I love you", and he said "I You" and that was that. I told him to leave his diaper on and he did.

I don't know if this means something. Is he ready to train? Should I have taken him in the bathroom and sat him on the toilet? I am reluctant to take him out of his room, since sometimes he thinks that means it's time to run all over the house. Maybe I should bring the potty chair in there when I go to check him?

Last weekend in church I saw a family with a bunch of kids, they were in the front row because they were having their baby baptized after Mass. I noticed their oldest was autistic, or at least that's what I figured. He was rocking and seemed pretty ticky, he seemed familiar. He got mad at one point in the Mass and the Dad was so, so nice with him. The kid kept STOMPING his foot and the dad just talked to him and calmed him. I noticed when the dad picked him up that the kid was still wearing diapers and I got so upset! I have no idea why, I don't care that Anthony isn't trained, he is working on a lot of things and that just isn't one of them right now. But man - I guess on some level it must bug me because BOY OH BOY was I upset. I couldn't stop crying, I made my sister cry, it was time for Communion, it was TOTALLY embarrassing. PLUS I felt like a jerk because that family was FINE, they seemed FINE. It was ME that I was crying for, which is completely selfish and not exactly how I try to be, especially in church! Sheesh!

Meeting

Tonight I'm going to a support group, meeting type thing, for parents of children with Autism. It's actually called Talking About a Cure for Autism, which ... I hope that's not all we talk about, because it seems fruitless to talk about a cure for autism at this point. I hope that we can talk about living with a child who has autism and how to best do that. I would love to talk to someone sometime who has had the same experiences as I have - not the same exact experiences, but close. So I hope that the name is not indicative of all that they do. I am looking forward to getting out.

There is an Autism Expo this weekend that I'd like to attend. Apparently, they have a play area for kids, so I think I'll take Anthony. I want to look into some ID type stuff for him, his school has a booth there, and I like the idea of taking him somewhere on the weekend where he can play and not be the only kid with autism there.

He has been taking his diaper off recently when he is dirty. We are hoping that this is indicative of his NOTICING that he has a diaper at all. Otherwise, it's just a pain. It comes upon me slowly, the realization that he has no pants or diaper on. He came walking up to me yesterday and I looked at him and said hi and then I thought, hmmm,, what is different about him? He had just pulled off his pants and diaper and left them in the living room. Sheesh.

He was very wound up last night in his room. I went up and told him to lie down but he RAN out of the room, I followed him to see what he was doing. He just went into the kitchen, then to the livingroom, then when I sat down, he jumped on me like usual, rubbing his belly on my back. So I took him back upstairs, carrying him, which was hard as he pulled onto every wall in between there and his room. Finally we went up and I said GOOD NIGHT and he said GOOD NIGHT. I said I LOVE YOU and he said I, I, I. Then I left and he seemed better. He didn't go to sleep but maybe Mike didn't say good night to him in just that way? Maybe he was used to me putting him to bed last week when Mike was gone? Maybe he just wanted to run around the house a little? I'm damned if I know.

Things You Have to Do

Things I have to do that I don't think other mothers, typical mothers, mothers of typical children have to do, probably.

• be the only one to go in and get their 4.5 year old in the morning. Anthony just slams the door on Mike when he goes to get him, usually. He loves Mike but he really likes when I go get him because he likes to
• rub his belly on my back. He is obsessive about it. He started it when I was pregnant with Maria so that's almost three years!
• carry their 4.5 year old.
  
• try and figure out what's wrong with their 4.5 year old, with no words to describe it.
  
• block the washer and dryer so that their 4.5 year old doesn't open the dryer door, climb up on the dryer, and get their (socked and shoed) feet into the water of the washer.
  
• wrap duct tape around the knives, so that their 4.5 year old can flip a knife in front of his face without hurting himself.
• Drive so freaking far to school.
  
• keep their 4.5 the hell out of the toilet.
• find their toothbrush every day, because their 4.5 year old has STOLEN it so he can whip it around in front of his face.
• listen to the incredible amount of noise coming from their 4.5 year old's bedroom before he goes to bed. I mean, it's NOISY. It sounds like ten men up there! Gymnasts!
  

Oh, on and on. There are lots of things that we do that other parents don't have to do. But there are also lots of things that we do that other parents do too. We worry about the future. We hold hands when we go for walks. We love our boy and we know he loves us. We watch our kids run and play together. We are all the same, and different at the same time.

PARENTHOOD

I watched the new show Parenthood today, which has a character who has Asperger's, he is diagnosed in the pilot. I cried and cried watching it. Our experience is different, because Anthony doesn't talk much and that was our first sign that he had autism, and he was 2.5 years old when we started him in therapy. This kid on the show is like ... ten? Eight? Because he talks, his parents don't really deal with his issues until he is a behavior problem in school. Some kids are being mean to him and he bites and attacks the boy that calls him a freak. Personally, I thought it was fair, but I might be biased. I read that one of the Producers of the show (I think, producer) has a son with Asperger's and I'm sure that's the reason that it's all treated so fairly, but I think a lot of it has to do with the fact that this actor is AMAZING. There is one scene where the boy leaves his cousin's grade school concert, and he is standing in the playground with his dad watching him, standing right in a puddle and his feet are soaked. I cried and cried watching the scene - partly because the dad is asking HIS dad for help, because "something is wrong with" his son, but mostly because Anthony likes to stand in water like that, too. It is a funky thing, being a mother to a child with autism. It sneaks up on me all the time - I think "my son has autism", and it blows my mind. It's like I forget every day. I hope I continue to forget, I want to always think of him as Anthony first, as my first boy, my baby, without thinking of him having autism first. I don't want to get so hung up on the fact that he has autism that that's all I think about.

• 
  

Stim

 
I have been trying to think of a funny way to use the word stim but I can't. Stimtastic! Stimmy McFlapperson! Ugh. He does this (pictured) a lot. Sometimes he likes to hold things in his hand and flip them near his head, toothbrushes, mostly. Mostly OUR toothbrushes, sad to say. I just bought like eight more for Mike and me tonight because seriously, we can never find our damned toothbrushes! Sometimes he hits himself in the head and jaw, which must feel good to him because of his sensory issues - he can see it and feel it! It doesn't bother me that he does it, but it bothers me that it bothers others. One time we were at a playgroup and he was doing it and these two girls, both about a year older than he were laughing at him. Of course, he didn't care but I did. I can still feel it. I wanted to SMACK those girls and they were little! I just - it brings up all these feelings that I have, I feel like they're making fun of me, like I am their age or something. I am getting hot just thinking about it. It's a terrible thing, to want your child to act normal so he doesn't get made fun of, and to want him to act however he needs to act to feel good and screw the world, at exactly the same time.

A Birth Story

This birth story is amazing and beautiful and I am a shallow person, but I can't get over how gorgeous the mom looks during delivery! Her eyeliner is perfect!

It was very painful for me to read this story - I sometimes think about how differently we would have received the news that Anthony had autism if we knew it right away, right when he was born. Some kids with autism have other problems too, so the parents know that there is something going on from the beginning of their lives. I know of moms whose kids have Down Syndrome who knew it before they were born. I know of moms whose kids were not going to survive outside of the womb. Oh, the pain! How do people stand the pain of having children? Everything makes you feel like your heart and all your nerve endings are now on the outside of your body, exposed to all the elements.

Three Years Old

The year Anthony turned three, he started school, which was huge. We had never left him anywhere before, and kind of before we knew it, he was off every day to school for three hours. His teacher was very good and experienced and she knew just how to treat us, and Anthony, to get us out of there and allow him to do his thing. He had occupational and speech therapy at school, with varying degrees of success. His OT was going on maternity leave almost immediately, and he missed a few sessions before his speech therapist told me that he wasn't getting any OT. I had to make a big stink to get someone to come in, and of course they told me that he was FOR SURE going to get it all made up, etc., etc.

We started him in private occupational therapy, too. Mike has a friend at work whose cousin has a son with autism and early on, she recommended lots and lots of therapy for Anthony, so that's what we were trying to do. Anthony seemed to do well in therapy, but he certainly never really took off talking like I have always dreamed he would.

I think, as I look at his blog, that this was his roughest year sleep wise. I hope the worst is not to come, but when I look at other people's blogs and read books about people with kids with autism, it doesn't look likely. I assume he has such trouble sleeping because of his sensory issues, which are profound. I personally think that even if he didn't have autism, he would have these sensory issues. I don't think he is too far on the autism spectrum, but he is so knotted up by sensory issues, I think it makes it worse. This is all speculation, natch.

We got him his evaluation for his ABA school when he was three, three and a half, really, but it would be six months before he started. He has made the most progress at his ABA school, but it is still such slow going, to me. He is still not toilet trained, and I don't know that we are much closer now than we were when he started working on it in school.

When he turned four, I had just had Veronica, Maria was 18 months old. I think I've said this elsewhere but he never really acknowledges Veronica. He will very occasionally pat her on the head but I think that's just to feel her hair! I hope that he gets some appreciation for these girls, Maria especially. She loves him so, so much and he coldly ignores her most of the time.

Two Years Old

From two to three, we came a long way. When he was two, we had no idea there was anything wrong, and when he was three, he was already diagnosed and through early intervention. Big year!

I'd say in this year he really started having trouble staying asleep. I look back on his blog and can see so many days where he didn't nap, nights where he fell asleep early but woke up and was babbling away in his room. He was so engaged, though, we had no suspicions that he had autism. After we brought Maria home, he used to look at her all the time, lick her head (okay that is kind of weird), etc. He used to get very upset if she cried and we went to get her - he wanted no one to touch her! Now with Veronica, he literally never looks at her. Is that regression? I don't think so, I think he was always autistic, but still, I can see how people have that experience.

He started looking at things upside down and peripherally sometime around 2.5. I thought it was weird, I thought his sleeping badly was weird, I thought his love of small spaces was weird, but I never thought it meant he had autism. He was never off in his own world, like I thought of kids with autism being.

He started First Steps in February of 2008. When they came to do the evaluation, and I swear this is true, he started walking on his toes. I remember I thought he was reaching for something! Those women that came must have thought we were idiots. He took occupational therapy, developmental therapy, and speech therapy for a while and then we cut out speech therapy and doubled up on occupational therapy. He still wasn't talking but we found out more about his sensory issues, which was that he had a LOT of them. We got him a trampoline, a bean bag chair, all sorts of things for him to play with.

I started hearing him up in the night when I was downstairs nursing Maria. At the same time, this movie was on HBO in pretty heavy rotation and I watched it in the night, nursing the baby, and I would cry and cry because I thought that the kids in it sort of sounded like Anthony. There is one child in it who is profoundly affected by autism and they show a video of him in his room, naked and pacing and stimming and he sounded like an animal and also like Anthony. I feel like I accepted that Anthony had autism during those nights in the chair with Maria, nursing and crying and nursing and crying. It really does feel like a loss and I think it's important to deal with it that way. You of course still have your baby, but it is a different way than you thought it was going to be.

I think it can be especially hard when it's your first, although of course we don't know any other way. It's just - you have so many hopes and dreams for your child and it's hard when those dreams are dashed, so slowly and over so much time. It is easy to get lulled into the idea that your child's life is over, just because his life as you knew it or dreamed it is over. The fact is, Anthony can be anything, it doesn't have to define him, that he has autism. We have no idea what the future holds for Anthony, just the same as every other damned parent in the world. So we act like every other parent - we try and set him up with the best resources possible, so he can do the best that he can with what he's been given. I do believe that now, but man. I guess I didn't back in the spring of 2008.

One Year Old

So as I said, he was not saying any words by the time he was one. He started to say words in his second year, but he really didn't string any together. He never, Mike noted, said "airplane" when he heard one flying overhead. We knew he could hear well because even if you whispered "cookie" from three miles away, he could hear and wanted one. We loved Signing Time, and he signed a lot. By the time he was 16-18 months old, he knew his alphabet and letters and he could count to ten. He also knew colors, all animals, basically everything covered in Signing Time songs. I'd say we began to notice differences in him and other kids, real differences when he was about 18 months old. I asked his doctor about it when he was 18 months old, because we noticed that he didn't respond to any requests. One night when my sister was over, we were trying to get him to hand us a bag of chips and he was getting really upset because he could NOT seem to do it. I talked to his doctor about it and he said that he was clearly smart and he wasn't worried. He said "keep reading to him and keep talking to him". He also said we could go to playgroups and open gyms but that I shouldn't expect him to play with other kids. I remember thinking that was good, because he really didn't play with others. He had sensory issues, looking back, but I certainly didn't realize it then. He loved to be upside down, he looked at the tv peripherally, and he was a real daredevil - he climbed on EVERYTHING. He broken the drawers in his dresser, because he'd pull them out to climb on them to get to the top of his dresser. I moved him to a toddler bed when he was around two and naps became a little crazy. I'd leave him in his room (we had a hook and eye lock on the door) for an hour and I'd find him up on his dresser more than half the time. One day he was mad about taking a nap and he pulled his closet doors off the hinges. We started taking things out of his room, and I joked that it looked like a prison cell, but it really did!

When he was 21 months old, he broke his foot in his crib. I went out to see a play and when I called at intermission, Mike said that Anthony had been crying a lot, which was unusual. Mike kept going up and checking on him but he kept crying. By the time I got home, he was sleeping. The next morning, he was kind of limping, but still tearing around. When Mike changed his diaper he noticed that his foot was swollen. But we never thought anything was wrong because he limped, but he didn't stop, he never even slowed down. Finally, we called the doctor and the triage nurse recommended that we take him to the local children's hospital ER, so we did. I remember we had to wait FOREVER for an x-ray and I almost just took him home, I was so convinced that he hadn't done anything. I was super embarassed when it turned out his foot was broken, of course. We figured he had done it on his crib and we moved him to a toddler bed right after that. This was another sign that I didn't know about - his threshold for pain was very high - he never cried teething, he never minded when I wiped his nose, in fact it seemed the rougher the better. Now that I have Maria and Veronica, I can tell that teething seems to bug typical children!

He also lined things up. I never thought one thing of it. Ugh. This makes me feel so stupid, to write all this stuff down. HOW could we not have seen it? WHY didn't I push the doctor to give me a referral for early intervention? It's getting depressing in here...

...which I hate, because we really did have fun. He has always been a joyful person, he is a positive person. Now that there are so many kids around, I think back so often on when it was just me and Anthony. There is no point, I suppose, in worrying about why I didn't know he had autism, I just didn't. Now we do.

First Post

I hate to bog down Anthony's regular blog with what can be ... not SAD posts, necessarily, but just ... I try and think that Anthony is a child first, not just a child with autism, so I don't want to turn his blog into an autism blog, but I would like to have somewhere to go to talk about Anthony and autism. I'm going to try to go in order of how it all went down, for us, and maybe I'll refer to his other blog? Maybe not. We'll see.

We'll start with pregnancy. I found out I was pregnant with Anthony in October of 2004, three months after I got married. It was a weird set of circumstances, one of my oldest friends died tragically and I had to go home to NJ. I was supposed to be in NJ the weekend after her funeral, for a wedding, so I drove out with my sister and then picked up Mike that Friday at the airport and we went down the shore for my friend Chrissy's wedding. I thought maybe I was pregnant, because I thought I was late, which I never was, but I honestly was so traumatized by my friend Kathy's sudden sickness and death, I didn't know what day it was. I took pregnancy tests in NJ but they were the kind that have pluses and minuses and maybe it's just me but I can't figure that crap out. I was exhausted after the wedding and we flew home on Sunday and went to the drugstore to get skim milk and a pregnancy test (that was the list) and found out I was pregnant that night. I used the test that flashes PREGNANT!, which is my favorite.

Anyway, it was a fine pregnancy, I was 'elderly', meaning I would be over 35 when I delivered. I had some spotting for several weeks, but some women just do, my doctor told me. It was a not-so-great labor and delivery story, involving a late doula, a terrified pregnant lady, a giant headed baby, several doctors checking in and out all day, and finally a c-section at 9:00 on a Friday night. Anthony was a screamer from the beginning, I remember the nurse said to him "What are you so mad about?" right after he was born. He cried and cried and cried and cried. He nursed the HECK out of me, he was a ROUGH nurser. He didn't like me to look at him when he nursed - we used to joke that he was like Tom Cruise with his housekeeper - NO EYE CONTACT! He was colicky and had to be held all the time. He screamed and screamed. It is hard to write about even now. We were so new at everything, we didn't know what to do with him. I finally read my book The Happiest Baby on the Block, which I had bought the night before Anthony was born. I took the things that the author said to do and just did them to the extreme. If it said to swaddle him, I wrapped him up SO TIGHTLY he couldn't move. If it said to say SHHH in his ear, I ran the vacuum and held him right near it. If it said to swing him, I SWUNG him. It seemed to help, he got older, and at around four months he seemed over it. At around six months, I started to sleep train him, to get him out of his swaddle and stop rocking him to sleep. It really worked - we had some long nights, but he started sleeping well and started meeting milestones and all was well. He started sitting up, eating solids, crawling, standing and walking, the regular stuff. He wasn't speaking by the time he was one, he really didn't have any words but I never thought a thing of it. I used to tell people he was the strong but silent type.