Sunday, April 22, 2012

First Signs.

Besides the question of how I think JT ended up with autism (which I explained here), people often ask what the first signs were that JT had autism.

JT actually had signs from birth, although there is absolutely no way we could have known it was autism. Looking back, however, I can see it.

In the hospital, he wanted to stay in the little bassinet. No matter how much I tried the skin to skin contact to calm him, I found he was only happy when I wasn't touching him. He wouldn't nurse: I had nursed Audrey until she was 13 months old (so I had just weaned her 3 months prior to his birth), so I knew what I was doing. He wouldn't latch, period. He would chug those little bottles of formula, though, so I knew he was hungry. If I tried to wait it out, so that he was super hungry and maybe he would nurse, he would scream until he would get the bottle.

He was an easy baby. He just wanted to be in his room, with the lights out, door cracked shut. He woke 2 times a night from the 3rd day on (when he was released from the hospital and we came home). My family had purchased a $250 co-sleeper bed for him to sleep in, so he could be close. He flat out refused it, screaming until he was in his crib, lights off, door cracked. He wanted that middle of the night bottle and to be immediately returned to his crib. I told my doctor at 6 weeks something was wrong, because he was 'too easy'. I was half-joking - remember I had a 16 month old at home, so I knew what babies were supposed to be like. He told me to be thankful, he was a dream baby. Enjoy him.

JT had several ear infections (9) his first 15 months of life. We wondered why he wasn't talking, and upon completing a hearing test, we found he had 80% hearing loss. We had tubes put in soon after (he was about 16 months old), expecting his language to take off.

It didn't happen.

I thought maybe the hearing loss was still the issue (sometimes it takes a while to resolve) until I discovered one day that I could blow up a balloon in another room (one of his absolute favorite things) and he would come running. I didn't know then it was autism, but I knew it wasn't hearing loss. I was told boys are late talkers, that he would start when he was ready. People told me stories of sons, grandsons, cousins' friends nephews who didn't talk and suddenly spoke in sentences. Everyone said not to worry.

Then at 21 months, I picked up a People magazine with Jenny McCarthy on the cover with her son Evan. I honestly grabbed it because I had no idea what autism was and I thought Jenny was hilarious.

I remember coming home from Kroger and later that night picking up the magazine, just expecting a good read.

My heart absolutely dropped as I was reading it. I looked up from the magazine to see JT flapping and toe walking as I was reading Evan's symptoms. I ran back to my computer and googled 'autism symptoms'. I cried as I checked off almost every single one.

Toe walking. Hand flapping. Lack of eye contact. No pointing. No joint interest. No imitation. Preferring to be alone. HUGE tantrums beyond anything I'd ever seen. Lack of any language. Lack of response to name. No pretend play, instead using toys inappropriately - mostly spinning wheels and playing with door stoppers. Lining up toys. Sensory seeking - jumping off tables, running into things - without any indication of fear of danger. Mouthing everything. The W sit. The list went on and on.

The next day I made an appointment with our awesome pediatrician, who got us in the next day. When we saw him, and I pointed it out, he made us an appointment with the team at Arkansas Children's Hospital to get a full evaluation. I found out later that the same day he wrote 'probable autism spectrum disorder' in JT's chart. He was kind, understanding and positive. That in itself helped our journey start off on a positive note, which I think has helped all along.

1 comment:

  1. This was a very interesting, informative post. I imagine your fear of the unknown during that time. You are a very strong woman with a very strong family. JT and Audrey are lucky to have you as a mom!