Filed Under (CMV & Special Needs) by Kel on 10-09-2012

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, or is super about awareness. Like CMV, like deafness, this is just another step. Maybe if I had one issue to champion, I’d be more prone to get behind some movement or another, but I have a lot of stuff going on with this kid! And I don’t embrace it; I don’t love being a mom to a kid with autism, I don’t feel blessed to have a special needs child. Frankly, it sucks, and four and a half years later, I still wish it hadn’t happened and that I could know the kid Danny would have been.

A part of me wonders if that doesn’t exist in most parents of kids with some issue or other… They just don’t want to admit it, because it doesn’t sound good to wish your kid was different from the way they are. I do, though. I wish his life was easier, that he could knock down the barriers that he lives with. I don’t feel sorry for him, or us, though. It sucks, but some things in life just do. Life is about making the best of the hand you’re dealt, and I tend to think we are doing that, and doing it well.

Like with CMV, we certainly could have this autism business worse. He’s not violent. He’s not 100% uncommunicative. He’s not extreme. And he is Danny, with all his humor and cheekiness and mischief.

The neurologist asked, as his parting question, how Danny is with hugs – because some kids with autism don’t or can’t give their parents that. In response, Danny stepped over and leaned into the doctor in his version of a hug.

Guess he answered that question for us.

And what a cool answer it was. That’s our Danny.

     

 

Comments

Christine carter on 11 September, 2012 at 10:29 am #

Kelly- this post is just amazing. I had no idea Danny was autistic, just thought it all had to do w cmv. You’re right, knowing doesn’t change anything, except for maybe a “piece of mind” if that’s what you wanna call it. I admire your honesty. Most people don’t say how they really feel about these things bc of what others might think or say or simply the fact that as a parent your not “supposed” to think negative about your child. Truth is I bet everyone dealing with these issues or any other issues feels the same way as you. You are such a strong person and a damn good mother. I dunno if eric and I could handle these things if that every happened when we have kids. Like you said though, life just sucks sometimes and there’s nothing you can do about it but take it day by day and be thankful for all you do have. You have 3 beautiful boys! I love the whole hug thing by the way. Danny rocks!


karen on 11 September, 2012 at 2:38 pm #

I could probably go on for hours about this…but I won’t. You know that saying life isn’t about weathering the storms, it is about learning how to dance in the rain. Simple as that. I have spent my life’s work with children such as Danny and what an honor it has been to be part of their lives, and I am so proud to be Danny’s gramma. What a wonderful little spark he is and I know the world is a better place because he is here.


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