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.