Monday, April 13, 2015

The Things That Matter

We were lost. Again. In the 5 1/2 years Ethan has been seeing Dr. Milanese, the developmental pediatrician, her office has moved three times. This year the confusion was my fault. It probably would have helped if I'd looked at the reminder card from her office more carefully, so I wasn't searching for a building number that didn't exist.

I wanted but didn't want Ethan to go to this appointment. I enjoy checking with Dr. Milanese -- she's fabulous at what she does -- but in the past our appointments have seemed to be mostly about what Ethan can't do, what makes him still have a diagnosis, etc., etc.

There was that. But more.

A few years ago, she kept pushing for Ethan to have some sort of genetic testing. She kept throwing around ruling out that Ethan doesn't have Fragile X syndrome, which from my limited Googling skills doesn't seem to make too much sense, as usually it's linked with developmental disability, and Ethan has a super high IQ. ("You know, with your family history of autism," she has said for multiple years. "And it would be good for your daughter to know. And you aren't planning on have any more children, are you?"). Not that she'd said it in a judging way. Although who knew what she was thinking?

Another year, and we hadn't gotten the testing done.

Now here we were. And with Chloe, and Dr. Milanese's watchful, judging eyes.

I don't have any overwhelming concerns about Chloe and autism. There are times when she will do or not do something and I get a little worried, but I think that is natural for anyone who has had a special needs child. I also think that because Ethan's form of autism is so mild, and because I've already seen some positive things Chloe is doing, socially speaking, I feel a bit more at peace. And an autism diagnosis doesn't seem as scary.

I have grown to accept Ethan's autism. I know it may not be as easy when he is older, and I may not feel that so much. But right now, I am sitting with a feeling that took a long time to get to. Autism isn't constantly hanging over our heads, whether we're talking about Ethan or Chloe. Which is why I don't want to get the darned genetic testing. I love my sweet boy. I don't care about his genes. Only I don't know how to tell this to the professional, to the one with the laptop and the clipboard, because I can't share my heart.

As I suspected, Dr. Milanese started chatting with Ethan while keeping an eye on Chloe. At one point she called her name, asking her not to touch something, and Chloe turned to look at her.

"Ahh, I see how she understands the cadence in my voice," she remarked.

This scrutiny, while not unexpected, made me rather uncomfortable. I do appreciate having the connection so that if red flags appear we have an "in" with the developmental pediatrician -- no waiting around. I just felt as if the entire appointment was a test.

I felt as if my life and choices were being put to a test.

She continued to chat with Ethan, offering up tidbits about herself to see if Ethan would comment; pointing out things to him; asking him questions.

She watched the way he interacted with Chloe -- getting her toys, offering her snacks. They sat down at a little table together playing with a wooden stacking toy. It was meant for older kids but Chloe was trying her darnedest to get the balls around the pegs. Ethan was becoming frustrated that she wasn't stacking them by color.

"Does Chloe have any words?" Dr. Milanese asked Ethan, not me.

"She says 'maaa' when she wants milk and 'baba' for bottle," he answered. She does have some other words, but I wouldn't say she's had her language explosion yet.

"It's good to know she is using her words to communicate rather than just labeling things," she said to me.

The appointment went on, a jumble of conversations interrupted by Ethan interrupting or the baby getting into something or Ethan getting silly and rambunctious. "This is our life," I said kind of jokingly but seriously at one point, and I wondered.

This is the point where everyone in the world will tell me I shouldn't care and that it's none of her business, but I wondered if I was being judged.

I wondered if the medical, logical side of her brain was wondering why we would have "risked" having another child, why we kept blowing off this genetic testing that she'd once again mentioned?

Our time was almost up. For the first time in a long time, Dr. Milanese surprised me. Instead of telling me the things Ethan should be doing that he wasn't, she said, "Ethan seems more conversational than last year. Have you noticed that?" I agreed.

"I have no concerns about Chloe right now," she continued. I knew she'd been watching.

She sent us on our way, encouraging me to follow up with the neurogeneticist. "They'll provide additional neuropsych testing so you'll have that to stack against the school's tests," she said.

I wanted to tell her I was a little burnt out on them all. CARS, ADOS, any and all of it. I had spent too long watching numbers and seeing if they'd inch in the "right" direction. And they would always inch and there was always improvement, but it was pretty obvious at this point she wasn't going to remove an autism stamp off his forehead.

I have traveled a long path that I am still traveling. One that has been slowly worming its way out of the habit of wanting MY child to be the best, the smartest, the most adjusted, the most popular, the most talented, the most advanced, the most loving and giving and generous.

I have fought hard battles against thoughts birthed in childhood that my family was different, something was wrong with me or them, that we were somehow defective.

I don't want my son's genes tested right now. I just want to learn how to love him fully and truly.

If Chloe started showing delays we would of course get her help, but I am, God help me, trying to enjoy our last one. I don't always want to have eyes like a developmental pediatrician. I don't want our play time together to constantly be like a Dr. Milanese appointment.

If I could tell her how I really feel, I would have asked: Do you know what it's like to miss your son's babyhood because you were afraid something was wrong with him? Do you know what it's like to live most of life dreading things that might never happen? Do you know what it's like to be learning how to take risks and to let go and to learn that love is not what your child does or how they make you feel? Do you know what it's like to be blessed with a gift that you never thought you'd have?

This is why we have another. This is why I am done with tests right now. This is why we only see you once a year, doctor. Because I respect you, but you are all about the diagnosis. We are doing life. And I am resolving to love every last imperfect, lovely, scary, awesome, unpredictable bit of it.

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