My sweet Casey turned 30 last week. I can’t believe it – but I really can’t believe that we’ve been living with autism for so long and haven’t gone completely insane.
Had anyone known more about autism way back then, she would have been diagnosed at a much younger age. It’s sad, really. I can watch the video from her first birthday party and see her completely ignore everyone. I can hear guests saying how happy she is in her own little world and that she didn’t need any of us. We might have realized she had autism if more information had been available.
Casey didn’t talk very much. She could say her ABC’s at 14 months and counted beyond 30 soon after. She could tell you what shapes were (even obscure ones that I didn’t teach her) and she could do puzzles upside down (meaning the picture was face down – she could still easily fit pieces into the frame.) She loved colors and named every color in the box. She sang whole songs after hearing them once or twice. But she couldn’t say she wanted a drink.
To be honest, I wasn’t too worried. She was my first and the only grandchild on either side of the family, so she spent all of her time with adults. She never had a chance to mimic other kids – and I didn’t have the chance to see that she wasn’t gaining skills like she should. She was 3 when it was recommended that we get her tested and start speech therapy. The doctor’s only concern was her speech, as she wasn’t showing any other signs of autism. (she was, but I didn’t realize it so I never mentioned it to her doctor).
We took her to a children’s hospital about an hour from our home for testing when she was 3, but for some reason, we never got results from them. By then, she had started a preschool that clearly was not a match for her and we enrolled her into the preschool our school district offered. It had special needs and typical kids. She still had a difficult time, but she had amazing teachers who knew a little about autism and they tried everything they could think of to help her.
She was 4 when she was officially diagnosed. I read scary books and learned what little there was to learn at the time. I think that is one of the biggest differences in then and now. Today – there is information everywhere about autism! Doctors know what it is and they know the signs to watch for. There are therapists who are trained to help children with autism. Schools prepare teachers (sometimes, they have to be told to do so, but IDEA makes sure they don’t argue too much – usually!) I was also told that the chances of autism were 1 in 10,000.
The latest data I’ve heard is that it’s now 1 in 68 children. That’s scary to me! I get asked all the time if I think there is more autism and what is causing it. I don’t know the answer to either. I think there are many things causing it – that’s why doctors can’t pin it down. Maybe it’s allergies to casein or gluten in some people. Maybe it’s genetics in some cases. Maybe it’s stomach issues. Maybe it’s environmental. I don’t know. I don’t think about it much as it doesn’t matter to me.
Is there more? I don’t know that, either. Sometimes, I think the higher numbers are because doctors know what to look for and are finding even the mildest cases. Those same mild cases might have just been called eccentric a few years ago. Again, it doesn’t matter to me. Should it? Probably, but I have my hands full right now. I’m always thinking and planning for the kids – I have little time to think about the why anymore.
The kids have changed so much over the years. If you would have told me when Casey was 8, 9, 10 years old that she would be going places with friends and volunteering at local organizations, I would have laughed in your face. At that time, she was spending hours screaming and beating her head into the walls. She didn’t sleep through the night and if her schedule changed, hell came to our house.
Rob never slept. He was constantly looking for things to jump off of or into. He had no sense of danger and darted away from me more times than I care to remember. He was picky about what he would eat and he saw no reason to talk. He didn’t have the meltdowns that Casey did and he’s still much more mellow than she is.
Today, he sleeps through the night almost all the time. He is beginning to try new foods and is willing to go new places, for short periods of time. She sleeps and loves to go anywhere she can. She wants new experiences and doesn’t hide from strangers anymore.
Some things haven’t changed, though. I still have to help with their baths and showers. I have to monitor their food intake and keep a constant eye on them when we go anywhere. Neither darts off anymore, but that’s a hard habit to break – and I’m always worried that a stranger might lure them away. I still worry about their future and I still have to plan most things down to the last details. And I get tired. And frustrated at times. Sometimes, a good cry is the best medicine.
It’s hard to believe autism has been a factor in my life for 30 years. It’s hard to imagine a life without it. But, really and truly, I wouldn’t change my life. God gave me three amazing kids with their own special talents. Autism made me stronger than I ever dreamed I could be. It also gave me a reason to use the nasty temper God gave me, too. (Once I’m pushed too far – watch out!) I’ve met close friends that I would never have known without autism.
I know you have tough days. I know you have days that crying is the only thing that helps. But, I also know that you will have good days, too, sooner or later. Maybe your good days won’t look like mine and that’s okay. We all need to take the good we see whenever we see it and enjoy every minute we can!
So – Happy Birthday, Casey-pie! Here’s to another 30 years of living and laughing with autism!