Sunday, January 27, 2013

In My Expert Opinion

When I hear people talk about "autism experts" the phrase always gives me pause.

I find myself thinking first about what makes an expert. The dictionary says something like: A person with comprehensive and authoritative knowledge in a particular area.

My mind immediately goes to people who HAVE autism. In a way, to me, THEY are the experts. I am a mom to a boy on the spectrum, and I am nowhere near being anything remotely like an expert even on my case of one. 

Then I find myself wondering, can you be an expert in something you do not have? I always answer myself: Okay, I agree that you can, because doctors are experts in all kinds of things they don't have, like cancer and heart disease...

But inevitably I then consider if you can be an expert -- have comprehensive and authoritative knowledge -- about something that is so large scale and yet so ill defined.

I mean, what IS autism? I know my son has it, I know the boy at the park has it, and yet they are not the same at all. We don't know why they both have autism. We don't know what to predict about their futures. Is there someone with comprehensive and authoritative knowledge about both these boys?

If so, where are they, what do they cost, and what do they have to offer?
Can't these experts get together and do something to contribute meaningfully to the community?

I am not saying that there are not autism experts, but I can't help feeling like there are more people claiming that title than makes sense to me.

Thursday, January 17, 2013

Nowhere and Everywhere

I have always had career interests and dreams, and I have pursued them. I did not put those away when I had children, or when we found out my oldest had autism. Two incomes always felt necessary for my husband and myself, for one thing, though I realize we could find ways to live more simply, but also work feels like part of my needs.

Which needs? Stimulation, socialization, satisfaction.

And one more: Usually, work is where things seem to make more sense to me, and I can feel competent.

So today's post is about how awful it feels to have a bad day at work. Not because I have a fragile ego, or because I think one bad day is the end of the world, but because of that otherwise unmet need to feel competent.

I became a mom nearly nine years ago, fulfilling a dream, and bringing joy to my heart. But I feel as though I have been waiting ever since to hit some kind of stride, to feel successful. My children are wonderful, beautiful, lovable people. I am proud of them and I cherish them. Around them, though, I feel so incompetent. So incompetent that reassurance does not help. Logic does not help. It's a feeling I have to own and continue to try to work through inside my own self, and I work on it, and ponder it, every single day.

Last night I had an important event at work, and I did not do as well as I would have liked. I got nervous, my voice squeezed out -- tight and weak -- in a way that embarrassed me, making it worse. It was not a disaster, but it was not what I had hoped, and the disappointment I feel in myself is bitter. I disappointed myself, and possibly others, too. I have to get dressed now and go back to work and face that.

I imagine it would be easier if I started off my day at home feeling strong and capable and successful as a mom. I got up extra earlier, made my kids a great breakfast, wrote necessary notes to teachers, set out warm clothes, and gave them wake-up kisses, but now I am going to try to wrench them from their beds for the third time and I feel sad about it because as wonderful as it is to start my day with my beautiful, growing children, I know that I had far more confidence about last night at work than I do about this morning at home, and look how that turned out.

Saturday, January 12, 2013

Big and Little

I used to teach in an elementary school with a few different buildings; after preschool, students moved to the K-3 building, and "big kids" filled the 4-6 building.

My son's school has only one building, but it hit me today that next year, when he goes to fourth grade, he will be a "big kid." I imagine some of my feelings match those of typical kids' parents. Because my Roo has autism, I feel acutely aware of the milestone in so many ways.

Will he still need a full time aide when he's "a big kid" next year? Probably.
Those suggested age ranges on toys -- do they match him now? I don't care, but I notice, and I am not sure.
Will the gulf continue to shrink, as it has, or will it start to grow? This scares me.
When is the best time to once consider uprooting him in the endless quest for a "good fit" in a school? We never stop looking.
When hormones kick in, what can we expect? Max on Parenthood comes to mind...

I adore my son, and he adds new kinds of joy to our lives each year, but I've often said we have never had an "easy year." He came into our lives in a bit of chaos with his 32-hour, vacuum-assisted labor, and almost nine years later our heads still spin, even as he becomes a big kid.

Okay, I spent fifteen minutes writing this. That is all the time I am going to allow for getting ahead of myself. I see the sun emerging on our Saturday morning, and I'm remembering to just be here, right now. Tomorrow has never offered guarantees of any kind. This day is an opportunity. I am ready to experience it with my husband, daughter, and my little boy.

Thursday, January 3, 2013

Look out World, Here We Come

We venture out more and more these days, emerging bit by bit from our self-imposed isolation, finding our way more into "The World."

I struggle with this.

My control issues, my insecurities, my fears about US and autism and "shoulds" cause the struggle, as much as I want to turn my back on these things.

I brought the Rooster to my office a couple of times when I was short of babysitters and he was off school for the holidays. I tensed, cringed, held breath, loved him, hoped, explained, tried not to apologize. I exercised my weak trust muscle, even though it twinged and shook a bit.

We did okay. I got my work done. Rooster connected in his own way.

A friend and colleague gently described the Rooster as "the happiest drunk at the party" and I willed myself to get what he meant and not turn it in to a reason to suffer unnecessarily.

We took the kids to more parks and parties and stores, and I exercised my weak patience muscles, including the one that smiles. 

I read about another mom honestly sharing her similar-but-different struggles in "The World" and had an epiphany --- realized how I have often silently and unfairly judged: "WHY don't you JUST STAY HOME? WHAT ON EARTH could you be thinking, taking your family out into the WORLD so much?"

Why should we cower? Who does that benefit? How can we grow in hiding?

I think 2013 is going to be our Roostery Family's year of Hello, World.