Monday, May 10, 2010

First Signs

Not long ago we had a guy come and wallpaper our downstairs bathroom. I called him "Mr. Fix-It" for Ethan and he happened to be there on a Tuesday afternoon, which is also known as Crazy Time in this house. Anna was home from school, we had two therapists here, and Mr. Fix-It had spread his wallpaper stuff all over the dining room. Ethan was stressed. He kept running to check the bathroom and saying, "Fix it! Fix it!" My own head was pounding. I was explaining to the guy about Ethan when he came out with, "You know what causes that, don't you?" It's all that mercury, in the vaccines."

"That might have something to do with it," I responded quickly. "But not with Ethan. I am convinced that's not the case with Ethan."

I'm not here to argue that vaccines have absolutely nothing to do with the increasing prevalence of autism. But I am here to say that they are most certainly not the only cause, and that I feel that with many kids, there are many more factors in play. It's just not that simple.

The fear that grips parents, thanks in part to the media and the fact that there HAS indeed been this increase is that there is no test. You don't know know, you have to wait and watch. Look for signs. Yet sometimes the signs are just typical baby or toddler behaviors. So it's more than just a sign, it's a combination of signs, and some of them indeed are subtle. What's also so challenging is that every case of autism is different...I think of it like fingerprints sometimes. There are similar themes but never quite the same expression of symptoms.

Sometimes, though I wish I could find a scientist somewhere doing a study on autism, how it develops, and how to detect it, and would love to offer myself and my experience. You see, I was looking for autism. I hate to admit it, but I was. All of my life, in the back of my mind I wondered what the chances of me having a child with autism actually were, because of my family's history. This is not the kind of information you can find online. I remember hearing that engineers are more likely to have children with autism. Dan is an engineer. I'd think these things and try to brush them aside, but every once in awhile, I'd poke around on the internet. Or I'd ask my mom what Andy was like as a baby.

So much of this was driven by fear. When I look back at my pregnancy and when Ethan was a newborn all I can see is that word, looming. FEAR. I have always been a fearful person but the fear hit me head on, especially after he was born. I remember two moments: one when he supposedly failed a hearing test (they redid it right there in the room and he was fine), and another when he choked on something and stopped breathing for a moment where I felt the fear just curl its fingers around my throat and not want to release its grip. Then Ethan had jaundice and we had to shuttle him about that first week to have his blood tested and keep him in sunlight (in November!). I was exhaused, as all new moms are, and I was tense and on edge, and adding to it was that gnawing fear that something is going to be wrong with my baby.

And so I think about the signs. What were they exactly? In the beginning it was so hard to differentiate because Anna was such an atypical newborn. She literally smiled at birth and was so alert. She didn't want to sleep! And then Ethan, my Ethan, who was so sleepy and seemed almost as if he'd been born a bit earlier than 13 days early.

He was fussy, but not terribly so. He would sleep and sleep and sleep sometimes. He couldn't make up his mind about nursing, but we made it through, at least for 5 months. There were little things, here and there. He smiled late. He seemed to be slow in tracking objects with his eyes. He didn't do a lot of cooing or back and forth noises, but there were some. I remember asking the doctor that, again and again. Does he play peek-a-boo? Does he imitate patty cake? I'd hear. And I'd say that yes, he'd done it before, but not that often. The doctor didn't seem to care about that. He just cared that Ethan possessed the skill.

There was this day when Ethan was five months old when the fear attacked me. This was around the time I took him to have pictures done and the bumbling guy there couldn't get Ethan to smile or really focus. I ended up calling the pediatrician to have him checked. She really didn't know what to tell me and didn't really find anything, except that one of Ethan's feet turned out more than the other. We started talking about my family history and Dr. Hoberman's expression softened. Before I knew it, she was recommending I talk to a counselor. It seemed, she thought, and understandably so, that this was more of an anxiety problem than a problem with Ethan.

And you know, in some ways she was right. No matter what ended up happening down the road, I look back now and think that I wasted at least a year worrying about Ethan when there wasn't really anything I could do, at that point.

What were the signs? I do ask myself that now, not because it matters, except that maybe, I think, I might be able to help someone else. The signs presented themselves ever so gradually, and confusingly came in conjunction with Ethan meeting just about all of his major milestones within the normal timeframe. Except that the social milestones were always flagging a bit.

I do remember that those reflexes they talk about (like the morrow or "startle" reflex) seemed to be taking longer than normal to fade away (which would signify some kind of neurological trouble, possibly). And one time I remember watching a friend's baby reach into a container and cleanly pick up cheerios, one by one. Ethan had trouble getting his hand in and picking up things cleanly (which would be a motor planning issue).

When Ethan was about nine months old I noticed something that made my blood run cold. I don't mean to sound dramatic, but it did. Instead of smiling at the cashiers in grocery stores, he would seem to look through them. He didn't act afraid or turn his head. He would literally seem to be staring not at them but past them. Time went by and he did start to get some words around a year. Interestingly, while he'd do daddy and mamma every once in awhile his favorite word was light. The word fan came early, too. That makes me smile now. Even then, lights and fans.

Last year I was still doing videos on a freelance basis and in March (Ethan would've been about 15-16 months old) we filmed a family with a little girl about Ethan's age. I marvelled at how social she was, but then I thought, well, she's a girl. Girls are usually more social."

Yet something inside me knew. After awhile the belief changed from an irriational fear that I could brush aside to a small voice saying, "Something is wrong. Get him checked out." One afternoon when Ethan was about 16 months old I decided to make the call. I had just left him with my mom and he had not flinched at my leaving. He didn't wave bye-bye, didn't say mama, just looked right through me. I got into the car and cried. I was shaking. I dialed Birth to 3 and asked for an evaluation. I hung up the phone and felt better, although I wasn't sure why.

I'm not sure why I'm writing all of this. Maybe it's because we're coming up on exactly a year since that first evaluation. While the year has been difficult, one of the hardest times was that beginning period, when only I was convinced and I spent a lot of time painfully trying to convince others. Dan didn't believe me. My parents thought I was just being paranoid because Ethan was not like Andy as a toddler. Sometimes I was actually ridiculed. That was so hard. It was hard for me too because, being such a worrier, I wondered again and again if it was all in my head. Then when he was evaluated the first time, he was borderline with the "red flags." They kind of left it up to me to do something. His doctor (who is the blase type) said to wait it out. But something in me said no, so all summer I spent calling a developmental pediatrician at CCMC, trying to get Ethan in for an appointment, arguing when they told me we might have to wait 6 or 8 months.

I don't know, maybe I'm writing all of this because with the vaccine controversy that's still out there I had to tell my story, that I am convinced that sometimes kids are just born with autism. I was watching like a hawk, and nothing changed after Ethan received vaccinations. Things just kept going on the pace they were going. Yes, I look to my own experience, and who knows if there isn't some influence? But I'm bothered by people like the wallpaper man who are convinced that has to be the explanation. Sometimes there are no easy answers. Often there are no easy answers. But I am thankful that every day, we are learning more.

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