Autism. I’ve studiously avoided the word for years; from about a year and a half to two years old, it’s been on my mind for Danny, but we never made it official. For a while, there was a bit of “maybe it’s just…” going on. Maybe it’s just his hearing loss. Maybe it’s just out parenting early in life because we never knew how well he heard or understood. Maybe it’s just something he’ll outgrow.

I think many parents think these things.

The fact is, it’s a reality for Danny and our family. We recently met with a neurologist who isn’t a big fan of the diagnosis, but he said that most professionals would agree that he’s got it. The fact I’d run into a while ago online, one the neurologist reiterated, is that autism rates are higher than average among CMV kids. At its core, it may not be the same autism as those kids born with it with no trauma or spurring factor, but the results are the same…or as “the same” as any two kids with autism are.

It’s so broad that it really doesn’t explain much.

A part of me wondered if I would react at all when a professional finally (sort of) agreed with our suspicion, confirmed it and made it real. I didn’t. It doesn’t change anything, except I no longer have to dance around it. No more “well, he has autistic tendencies” or “we think he may have autism,” he just has it. It’s no shock; in a way, I’ve known it for years.

I’m still not one of those autism moms that is lovey about it (more…)

I was hesitant to write this post in an effort to respect The Older’s privacy. However, when something like this comes along, I think it’s in part my ‘duty’ to share information in the hopes it helps other parents of kids who have sensory issues/Autism/Asperger syndrome.

My son’s school went on a field trip to the Tampa Theater this week. It’s a great place filled with history and independent films, and I’m thrilled the kids get to experience that with the school. I didn’t even think twice when I signed the form for him to go; it never crossed my mind that there would be any issue. Part of that was because I thought they were seeing a regular movie, and part of it was, well, I just didn’t think ahead.

They saw the show Little Monster Tales, and it was loud. Not only that, but there was a class of younger kids there who were screaming, and because The Older’s class was in the back, the sound bounced off the wall. According to his teacher, The Older, who has been diagnosed with Pervasive Developmental Disorder, ended up curled up in a ball with his hands over his ears and looking like he was in physical pain from the noise. Because his brain can’t process senses like other children his age, noises and the like send him into a panic, and he reacts like he is in pain - because he truly is in pain. His teacher, a wonderful person who was also his teacher last year, covered his ears as well, but the real blessing was the class mom who was with them. She recognized what was happening with The Older right away, and she ran out into the lobby and brought back foam earplugs! They weren’t quite as fancy as the ones shown, but they were similar, and he was able to sit through the show; he was able to enjoy the whole experience with his friends with no further issues at all. I am so happy he was able to see everything and not have to leave!

Since this is all new to me, the news that movie theaters even have these available might be well known. However, if even one parent reads this and can help their child enjoy something that they otherwise would have to miss out on, then I had to share what I learned. Because of this I’m going to buy a pair of earplugs so that he has them with him all the time, just in case we go somewhere and are surprised by something, but I’m thrilled to know that movie theaters have these in case I forget!

So, I’m done asking the question “is he really…” I’m done answering it to. People ask me, almost constantly, “Since he has been diagnosed with 22q deletion, is he *really* autistic?” The quick answer is: We don’t know. He could outgrow the tendencies he is showing, he could learn to control certain behaviors and sensory issues. We don’t know. But, my child has been, for the time, diagnosed with autism. And, he responds very well to the therapy and techniques that are used with autistic children.

The thing about “autism” is that it is almost purely diagnosed based on a set of behaviors. It is not like an illness where certain germs can be tested for, or like an ailment where physical abnormalities like swelling etc can be seen. It is a list of behaviors and mindsets. And my son has those behaviors and mindsets. He is autistic. (more…)