Monday, September 22, 2014

Early warnings: Autism

It's hard to put a finger on just what it was about my twins that alerted me to the fact that something wasn't quite right by the time they were 6 months old. My mom-gut was telling me something was different about them, and I wasn't the only one who noticed it - one of my sisters kept them overnight, just once, and said something to my mom when they were about 7 or 8 months old.

They could watch a full-length movie and not notice another thing in the world by the time they were 6 months old. If we turned the television off, screaming ensued that was uncontrollable, and quite frankly, I didn't have much patience for it, so I would turn the damned thing back on.

And the bouncing never stopped. They were late crawlers, slightly late walkers, but those boys could bounce their own seats from the time they were about 4 months old. Constantly bouncing. They loved to be on the move - car rides, stroller walks, battery-operated swings - if they were moving, they were happy (or asleep, same thing in my mind).

They didn't seek much affection. They didn't mind it, but it was never the problem when they were crying - they were hungry, wet, tired. They were fine with being alone. They do seek affection now, though.

They didn't start making eye contact, it just never came, at least not for more than a few fleeting seconds, and you could tell they were getting nervous about it while it was happening.

As they got older, they didn't stop chewing on inappropriate things, mostly toys, their clothes, shoes - I couldn't leave flip-flops in the living room with them, it seriously looked like we had a puppy, and we didn't. They still put everything in their mouths, even with chew tubes attached to their clothing.

They had sensory issues when it came to food as soon as they switched from baby foods - nothing crunchy, not animal crackers, cookies, french fries - if it required too much chewing, they weren't into it. If it required them to bite it, they weren't going to do it.

They loved fruits, they loved carrots and spaghetti and meat loaf. They still love those things, but we are adding more things along the way, thankfully. They ate french fries for the first time a few months ago; not that they'd never been offered, they were just always immediately discarded.

I'm certainly not complaining because my kids don't like potato chips or candy or much in the way of junk food, that part is fantastic and I will take it! But I feel like we're stuck in a rut, eating the same things over and over. I'm constantly experimenting, trying to find foods with similar textures that I can feed them...and I'd like to think I do a pretty good job of it, they're certainly close to where they should be for their age in height and weight, though they've always been big boys (7 pounds each when they were born, 3 weeks early).

They've never been very interested in other people, including each other. I kept my cousin's little girl, who is less than a year older than the twins, for New Year's Eve the year they turned 2 - she was able to get them to do a little bit of turn-taking, use their cars appropriately to go down the the ramp, and they generally had a decent time with her, but they weren't all that interested in her. Same with the children in Early Head Start, when we got them enrolled there for some socialization. They still don't want to play with their cousin, and while she is younger than them, she certainly notices their differences - and she's completely, unabashedly honest about them because, well, she's 3. That's a little rough for me.

They started crawling a little late (a month or two after most kids, not much of a delay there.)
They started walking at 14 and 16 months. No big deal. But they didn't seem to notice the things around them, they'd walk right into them. Even though he's been mobile for a while, Gamble still walks on his tip-toes (common in ASD kids) and Gage can spin for quite some time without getting dizzy. They both still love to spin, flap, bounce and jump. They're balls of energy, constantly on the move.

These things all kind of sound like normal child development, a big reason we didn't get a referral for a diagnosis until they were 2, it's just so hard to tell.

After they turned 2, they started getting aggressive towards each other and towards other people. Gage was a biter. It was usually noise that would set them off, but sometimes it seemed to be nothing at all. They're still aggressive with their triggers, such as transitioning into the classroom/home, taking their focus off of the television and onto getting their diapers changed, going from the kitchen after dinner. It feels like everything is a fight. But they're also lovers - they'll crawl right into a stranger's lap, or grab hold of a stranger's hand, without a moment's hesitation. I was the same way as a child, I never met a stranger, just new "friends" (I actually got into a "friend's" van when I was younger, luckily they actually did know my family and they returned me...).

They didn't answer to their names, though some thought maybe that was just because they were twins...but they just never paid attention to anyone when they were talking, at least they didn't show signs that they were. They're getting better at this, but it's still a work in progress.

So we got their hearing checked, because, well, they'll make you do that for developmental evaluations, anyway. Their hearing is perfect. They don't listen.


And still, some of this sounds just like every other kid in the world. But it's pervasive, it affects every minute of our lives. The boys will be 4 in a few months and for the most part, they've got no words. They don't follow simple instructions. They can't walk into a room without a small meltdown, the transition is tough for them and always has been - even if they're not coming/going, someone else doing so is distressing. Though, they are able to regulate themselves fairly quickly (not usually more than a 5-minute meltdown).

I'm lucky that I've gotten smiles since they were a couple of months old, I'm lucky that we have a house that's not just filled with meltdowns and vocal stims (humming, beat boxing-type sounds, monkey sounds, etc), but with laughter and tickles. I'm so very lucky that my boys are affectionate (when they want to be) and that while the going may be slow, they are capable of learning, they are capable of loving and they are capable of being kids.

We still watch TV a good majority of the time that we're home, but sometimes I can engage them in other activities - usually something to do with the iPad. We've tried sensory activities, we've tried games and drawing and imaginative play - they want nothing to do with it. It's very discouraging, especially for someone who loves learning, to not be able to engage your children. It's upsetting to not be able to get them to sit down with you with a physical book in your hands, though the iPad has really been a great thing for us.

I'll keep the hope that some day, I might get to hear my boys say a full sentence, but until then, all I need are hugs and tickles, and the sound of their giggles. Occasionally Gage will grab my face and look into my eyes, and those few seconds are precious to me, they give me hope.

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