Tuesday, December 29, 2009

I Thought...

I haven't talked much about this, but I have often remembered the first time I ever wondered: What if I had a child with autism?

This was well before we had reason to suspect that we already did.

My baby boy is less than a year old. He has had my heart for far longer than he's been outside my body. I fill journals with letters I write to him, pouring out my love and all my wishes for him -- a precursor to this blog. We are living in our first home, our condo. We are downstairs, we have the TV on, I'm wearing sweats. The Rooster is a sweet, slobbery, difficult baby who sleeps poorly and catches every germ, and he is gorgeous and charming too, and I am still more giddy over his existence than I am exhausted, but only by degrees, and not all the time. Parenthood strikes me as harder than I had expected, though I had not expected ease. Already I frequently feel baffled and awkward at mommy/baby groups but I keep thinking of it as a mommy problem, not a baby problem.

The Rooster is playing on the floor, not too near the TV, because we have been careful not to let him get too much screen time - hIt will be a year before I introduce him to Sesame Street (when my very pregnant body needs a rest after I feed him dinner and before daddy gets home), and I still am allowed to watch things that interest me on occasion. He is playing with farm magnets while Good Morning America is on, and the doctor is doing a medical story about "The Tilt Test." The idea is that you hold your baby in outstretched arms, then tilt him to see if he allows you to, or if he leans his body in effort to not tilt, or something like that -- somehow your baby's performance in this maneuver will indicate to you if he might have autism.

I immediately pick up the Rooster, and my heart starts to pick up its pace. The question has arrived, and we are tilting. The doctor in TV Land indicates babies will clearly do X or do Y in response, but not my baby. My baby seems to do kind of an XYZ thing. Inconclusive, if you even believe the validity of such a test, which I find dubious. I hear the question spoken inside my head: What if? And I think to myself this premature, uninformed, knee jerk thought: "Nothing could be worse than autism." And next I think, "I couldn't survive if my baby had autism." I have no reason to believe my child has autism, and for a moment I am caught shocked by the knowledge that I have neglected to worry about this ism, and in my neglect I have surely jinxed us into increased vulnerability. To make up for lost time, I begin to apply myself to worry about autism, which I know precious little about, in the hopes that worrying about it will serve as protection. I assume having an autistic child means never hearing your child tell you, "I love you," and I imagine that this is the worst thing that can happen to anyone in the whole wide world. As I listen to the morning show segment, hearing the word "autism" over and over again, I picture stereotypes of hopelessness and isolation. I make my boy cry as I keep trying to tilt him, and each time the outcome is inconclusive.

In another couple years, while we muddle through more inconclusive times, when we are asking ourselves these questions again, I will begin my education about autism and children with special needs. I will have as much to unlearn as to learn, and that is saying something.

I'm not a perfect student, and I am still forever asking my husband: Will he be okay? And my husband is forever answering me: He already is okay.

I read at Hopeful Parents today an interesting essay that said that kids with autism are not less -- in fact, they are more. Then have much to teach us. Not everything in the essay resonated for me, but that part sure did.

I've had a little holiday time off, and so I loaded the Kindle software on my phone and read "What I Thought I Knew," a memoir of a special needs mom's unique journey to special needs motherhood. I highly recommend this fascinating story of a divorced woman who discovered in a very unorthodox way that she was already sixth months pregnant, and that her child is likely to have special needs. She is not sure she wants to have or to keep this baby, a baby she did not plan for, a baby for which she is unprepared, a baby likely to have many challenges. She punctuates her tale with lists of things she thought she knew along the way, and then goes on to show you how wrong she turned out to be.

Earlier this month, I woke up with a strong urge to know how those of you who read this blog would complete the sentence, "I thought autism..." I wasn't sure why I wanted to know, and I hadn't yet read the memoir, or even heard of it. Those of you who commented really described similar suppositions to the ones I held. You said things like, "I thought autism was kids who couldn't talk and who just rocked back and forth," and, "I thought autism could only mean 'unreachable'. "

In that vein, here are things I thought I knew, in my own journey as a special needs mama.
  1. I thought I knew what autism looked like.
  2. I thought I knew that having a child with autism would break me.
  3. I thought I knew what happiness looked like.
  4. I thought I knew how to make sure I raised a happy child.
  5. I thought I knew how to prevent bad things from happening by worrying about them.
  6. I thought I knew everything I needed to know about hard work, and that I would always enjoy working hard at any challenge

Here is what I know today:
  • I have a child with autism. He tells me he loves me in so many ways, not just with words alone. He is not broken, nor are my friends' children who cannot say the words out loud. I am not broken, either. We are only as isolated as we choose to be.
  • Happiness looks different than it used to, and I get my share. I cannot GIVE my children happiness, but I hope I am helping them find, create, and embrace it.
  • Worry is just a black hole where time gets lost. It tugs at me all the time, but I fight to keep it from sucking me completely inside its vortex.
  • Sometimes life is hard. It is a work in progress. It is at the mercy of time.
  • Life changes, and life changes us. Much of what I believe I know at any moment in time will require some serious unlearning and relearning later.
What about you. What do you know? Is it what you thought you knew?


jess said...

I think most of all I'd say i thought I knew what love was. I thought I knew it's heights and I thought I knew its depths. I had no idea on either front. I am grateful that I got to know.

Stephanie said...

I really don't know what I know. Not yet.

jess said...

did my comment not come through?

i tried to write ..

i think more than anything i thought i knew what love was - its heights and its depths - i had no idea. and i'm grateful i had the chance to find out.