Wednesday, January 23, 2013

Spontaneous Baby Boy Hugs and Kisses - Why We Didn’t Think James Had Autism

Loving on Daddy in the snow
There are so many signs and symptoms of autism, it's one of those things that you ask yourself if you’re looking for symptoms, or, in our case, not looking for symptoms.

We blamed a lot of James' symptoms on him being a preemie and being a twin. He was born 5 weeks early but they say to add 2 weeks to that for twins. There's something that happens to you in the NICU that only other NICU moms understand. One of the most horrible feelings is seeing your baby turn one month old in the hospital and wonder if it was your fault that they were still there. That maybe they're still there because by the time I hit 35 weeks I literally could not breathe and I wanted them out. I regret thinking that every day. I think feeling those things are something that motivated me to use the preemie card, that card was so much easier.
Loving on Daddy when he got home from work

Here's why we didn't think James had autism.

Autism Sign: Lack of Affection

James doesn't lack affection, he has an abundance of it. James has spontaneous affection. Lack of spontaneous affection is one of the most noticeable signs of autism. But with James, if you're holding him he'll hug you and kiss you out of nowhere. Sometimes when he's walking by you he'll stop and grab your face and kiss you. When we're snuggling on the couch he'll turn and look at me and kiss me.

So James doesn't have autism because he loves on us.

Autism Sign: Lack of Range of Emotions

Nowadays the range of James' emotions pretty much goes from happy/content to pissed. But back then, back then being around 2 years ago, you could get James to babble at you and get him to smile. And his laugh. I don't think I can put the sound of James' laughter into words. James could throw a tantrum so wild you yourself start to cry because you can't help and then 30 minutes later when he's calmed down you can make him laugh and you fall right back in love with him. I've warned some people that once they hear James' laugh they will fall in love. It's gotten harder to get that belly laugh but it really is one of the greatest things ever, as you can see in this video.

Plus, I've said it before, the empathy he has for Lily. It's the best if she's upset and crying and then he starts to cry, or vice-versa, and their cries are in harmony, so funny. When they were apart and saw each other again you knew they missed each other from the smiles on their faces.

There you go, James doesn't have autism because he has lots of emotions.

Autism Sign: No Separation Anxiety from Parents

Kisses (and soda) from Mommy
James was so attached to me sometimes I would worry. Eventually it got so that when he got separated from me he would calm down if he knew (or thought) that I was gone. But if he knew that I was in the basement while he was upstairs it was the end of the world.

James doesn't have autism because he hates being away from me.

Autism Sign: Inability to Handle Change to Routine

I said that James hated having his schedule changed because I was so strict with the schedule the first year of their life. You know, feed your twins at the same time, have your twins sleep at the same, stuff like that.

So James doesn't have autism because his routine issues were my fault because I'm anal like that, and it was the only way I could survive.

Autism Sign: Sensory Issues

Preemie James
We said James had such trouble eating because his "suck" muscles for the "suck and swallow" instinct weren't very strong. Him and Lily turned out to have extreme acid reflux and so we blamed that first year of bad eating on acid not because he hated the way things felt in his mouth. Then when James did eat he only ate certain foods because he was picky, and maybe he had sensory issues because he was a preemie. He and Lily both hated fluorescent lights. That was completely blamed on the NICU because they spent their first 5 weeks of life in low light. All of those reasons could be true, or some of them, or autism could have caused all of his eating problems.

But those are reasons why we ruled autism out.

Autism Sign: Delays in Motor Skills

James didn't roll over or sit up or walk or hit other physical milestones because his head was "too heavy" for him to want to pick up (97th percentile for his age). There were also 8 tall people in the house who could pick him up and carry him and they all wanted to because there hadn't been a baby around for 12 years.

Seeing Daddy after 10 days of being apart
So James is lazy and spoiled so he doesn't have autism (here you need to remember that I'm a very sarcastic person, but I did tell myself those things).

Autism Sign: Delay and Loss of Speech

James' first word was when he was about 12 months old and it was "dog". It was Lily's first word and they said it within a couple days of each other and there's nothing wrong with Lily, so it's ok if it was a couple months late. And it was ok that James "lost words" because every time he would lose one he would gain one. Plus Lily never shut up, I mean, never stopped telling us stories.

James didn't have autism because he was gaining new language and just had a bad memory when it came to remembering the old stuff.

Autism Sign: Lack of Social Interaction, Doesn't Respond to Name

James wasn't social because Lily is SO social. She got so excited when people walked in a room, it was easy not to notice him. She wanted attention and to be held. James was content to stay where he was and when you got excited to see him it was pretty discouraging because he wouldn't even look at you. One of James' uncles is deaf in one ear so we blamed his non-responsiveness on possible hearing problems. We got a basic hearing test done and it showed his hearing as normal but they told us that those results aren't necessarily reliable because he was so young.

Somebody (probably himself) put baby in a corner
James didn't have autism because he wasn't social, he wasn't social because he had Lily to be social for him. And James didn't answer to you because he couldn't hear you not because he had autism.

And then there were obvious things. James' tantrums were wild and long. He didn't point which made it even harder to try and appease him. He was OBSESSED with the credits at the end of TV shows and movies. I personally just kinda figured that just how James was but his grandma's, maternal a pediatrician and paternal who had very close experience with autism, noticed these things and kept track.

I feel kinda stupid because you'd think, 1 in 88 kids (1 in 54 boys) have autism, and it's in James' family history… I also figured that my life was such hell at the time because raising twins was hell and that's just how it was. Oh yeah, he has red hair so we blamed his temper on that. When I was little I sure had attitude and I know my hair got blamed a lot.

And the other thing, James is wicked smart. When got him evaluated last August, so basically 2 1/5 years-old, James knew how to count to 12 and count down from 12. He knew his shapes and could identify them. He could draw a circle and a recognizable triangle. Not to mention he was on level 21 of Angry Birds, and there was more than one level with three stars. Most annoying, he knew that if we weren't at home my phone could access Netflix and his iPod touch couldn't and the little snot knew how to turn off airplane mode so he could watch things (and call people, grr) (we deleted the Netflix app). I thought it was cool that he was so smart, not worrisome. In James' diagnosis, a ten page packet that details the reasons why the doctor believes that James has autism and why it is autism and not an Autism Spectrum Disorder, the diagnosing doctor says "intelligent verging on the precocious." That doesn't sound too bad. I'm just glad James isn't some kind of savant cause when that kid learns to talk...

Looking at Mommy's phone
The moral of the story is: if you were to ask me when I started to wonder if James had autism, I really don't think I did. And I also don't think I worried what would happen if James did have autism because I knew we would do ABA just like our close family member had done and James would be fine. Now I don't worry that he'll be fine, I worry that if he's not fine it's because I couldn't give him 40 hours of ABA a week because I couldn't afford it because I didn't work hard enough or fight hard enough.

Then I think about all those mommies out there who don't know about ABA and have to see what I was seeing, my child slowly disappearing into a world within himself and when he came out he was jerked out, he hated it and I didn't want to do that to him so I just had to watch.

Holding hands
And what's worse? In James' case Lily has to watch it too. She has spent more time with him than anyone in the world. Last time I wrote about how he and I have to say goodbye but she does too. I took me about four tries to get through this: Letter to My Neurotypical Child. I hope I never have to say these words to her.

We've been working on James sitting at the table to eat, and it's been a fight. You bring him to the table by saying, "It's time to eat." There are a lot of different responses you can expect from James and on this particular night it was not a good response. But with ABA you're teaching the child to behave the way that their peers do, even if it means using all your strength to keep James in your lap to keep him at the table. It's pretty hard, but this one night, I had to hold Lily in her chair to keep her from going to him.

You get used to holding James down, but I will never get used to stopping Lily from comforting him.

1 comment:

  1. What a great post and an important one for moms of young children to read. You are doing an amazing job for your son. Way to step up to the plate.