Tuesday, May 22, 2012

Worried

As a special needs parent, there are good days and bad days. (Well, I suppose that's true of any parent--but I've only ever been a SN parent, so I have no basis for comparison). Everyone knows this. There are days you want to shout from the rooftops about the progress your child is making. And there are days when it takes every fiber of your being to just get through the day because you feel scared, overwhelmed, guilty. Today was the latter.

Prior to Gabriel getting a diagnosis of FXS, occasionally someone would mention autism because of his speech delay. This was always immediately shot down by me. I would hear none of it--I know my child better than anyone else in this world (except maybe Jake) and I knew Gabriel did not have autism. Even when he wasn't speaking at all, he was very social--had no stranger anxiety, would laugh and smile at anyone, made eye contact, etc. Not only did I truly believe Gabe did not fit the clinical criteria for autism, I also refused to label my child with what I believed to be an incredibly overused, cop-out diagnosis. I thought (and still kind of think...I'm on the fence at the moment) that the autism diagnosis is today, what the ADHD diagnosis was in the '90s. (Begin sarcasm) Your child doesn't fit the definition of perfect? Ok, here's a label! Instead of having your little boy go run around the backyard for an hour to burn energy, pop a Ritalin! (End sarcasm) I know that isn't a popular opinion in the SN community, but it is what it is. (And for the record, I do understand that some children truly have ADHD, just as some children truly have autism. I just think both are over diagnosed).

Anyway, I had to give some background on my feelings about autism in general, because even I can't believe what I'm thinking...I think Gabe could be autistic. About a third of children with FX meet the clinical criteria for autism. That means two thirds don't. Those are decent odds. I wouldn't play a $100,000 minimum bet blackjack table in Vegas with those odds, but I'd play a $5 table.

Here's why I'm thinking what I'm thinking:
  1. Over the last several months, Gabe is becoming more and more socially withdrawn. He used to love to go to the grocery store, sit in the cart, and smile and say hi to everyone voluntarily as we walked down the aisles. Jake and I carry him 90% of the time now, because not only will he not even respond when someone says hello, he seems to be incredibly overwhelmed at being around all those people. He wants to be held so he has our arms around him for safety, and he can bury his head in our neck and block out all the people. We oblige more often than not. I have no idea if that's right or wrong, but it's what works for us. (This is where him being the weight of the average 12 month old comes in handy. See, there's a plus to everything). God forbid a clerk tries to engage him in conversation. At best, he will just ignore them. At worst, he will shriek and try to bury his head further into my neck.
  2. Though Gabe got off to a very slow start with his language skills and began speech therapy at 15 months, he began closing the gap. A month ago, I would guess he was at age level for speech, or close to it. Speech went from being my biggest concern to my least concern, with Gabriel's overall development. He may have been a little behind still, but he was making progress. Here's what gets me worried now: I think he's regressing. I've been noticing some regression over the last week or two, but didn't say anything to Jake because I thought it might be in my head and didn't want to plant the seed in his head. Well, today Jake said something to me about it. That he had noticed it too. Gabe still has a decent sized vocabulary, and will put together some short sentences (typical 2 year old development), but it's becoming muddier. Where a week ago, Jake and I could understand 95% of what Gabe was trying to say, today we could only understand about 50%. The other half was so poorly enunciated that even us, Gabe's parents, couldn't make it out. Sometimes, if we asked him to repeat himself 2 or 10 times, we figured it out. Sometimes we didn't ever figure it out. He's also not using his words in situations where he used to use them. Example conversation from two weeks ago--Us: Gabe are you hungry for dinner? Gabe: Gabe hungry! Us: Do you want a grilled cheese, or chicken nuggets? Gabe: Nuggets and ranch! Example conversation from today: Us: Gabe are you hungry for dinner? Gabe: AH! Us: Are you hungry? Yes or no. Use your words, please. Gabe: yeah Us: Do you want a grilled cheese or chicken nuggets? Gabe: AAAHHHH!!!!
  3. Gabe likes to ignore us now. We can try to get his attention over and over again, and it's like talking to a brick wall. I know his hearing is fine. He just doesn't feel like responding. Again, not always. But it's happening more frequently than it used to. 
  4. Gabe has some sensory issues. These are no better or worse than they've ever been. He's sensitive to food textures and loud noises mainly.
Now, I can tell myself that the first point is Gabe just being a typical 2 year old. Some have stranger anxiety or are shy. Certainly not unheard of, in toddler land. I can even tell myself that the second point is just Gabe being a typical toddler--maybe he's trying to talk too fast to enunciate clearly and trying to see what he can get away with, if he doesn't talk to us. The third point could also be easily explained, I'm sure. The fourth point is typical of FXS kids. But when you combine all 4 together--my mind does wander down the autism road.

It's hard for Jake and I to figure out what's going on sometimes. What is typical 2 year old behavior? What is typical for FX? And what is abnormal for NT kids and FX kids? I suppose at some point in the near future, I'll mention my concerns to one of his doctors. Probably neuro. And I also suppose someday soon, I'll ask his therapists what they think.

I haven't done it yet. I'm scared to hear the answer.

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