It’s pretty certain that our daughter has autism. The state is in the process of confirming it — well actually, setting up an appointment with us (it’s been four weeks now). Danielle’s suspected it since almost day one in that way that mothers know what’s going on with their children. I came to terms with it at about ten months. Since then we’ve changed our parenting to match our understanding. It is not her role to conform to us, rather, it is our role to adapt our style to her needs. What’s the secret recipe, then? For us it’s been the same as it was for Gabe: know what she wants, understand how she communicates, respond accordingly. Adaptive parenting with some heavy leaning on Piaget, Gotto, and lessons we learned along the way.
First, unconditional love. No matter what happens we love her, just as we love our son and each other. We love our daughter. She is a person to whom we are linked inexorably and joyfully so. Every moment we are together, she is to be wrapped in the unspoken sphere of love that a parent has for a child.
Secondly, no comparing. At 21 months she should be doing X, Y, and Z things and saying A, B, and words and yadda yadda etc. etc. None of that matters. Not any more. Her progressions are measured against her previous moments. Her development is measured by her willingness to be in the world, to interact with Danielle and I, to chase her grandfather out of the den, to do something today that she didn’t do last week. The first thing we had to get over was that the definition of “normal” has changed. She’s the only normal we’ll ever want.
Third, communication. She has a way of seeing things, of understanding the world. It is not our job to force her to our way of thinking and seeing and communicating back. Rather, it is our job to ensure we understand the way she does things. The way she thinks and then transpose that to our way so that we can know her needs and wants and fears and joys. We don’t know how well she’ll be able to communicate as she gets older, so we need to learn her mind and language in order to be able to be her parents and protectors.
Fourth, no assumptions. At 21 months she doesn’t have a vocabulary to speak of. She doesn’t speak in the way you would expect her to. She does know what’s going on, though. She observes what’s happening around her. We don’t underestimate her or assume she can’t understand us. I share the groceries with her. Danielle teaches her music and songs. We dance together in the playroom as a family. Danielle finds her toys she likes and clothes she’ll enjoy wearing.
Fifth, withdrawn playtime is not a bad thing. There are moments in her day where she just wants to be alone. To do things by herself. The things she does may be mystical (spinning car wheels for 15 minutes, or drawing spirals and circles over and over) and they look frightening. Her face is content, though. Her forehead smooth and her breathing relaxed. Eyes focused on the task and not glazed and distant. She’s happy. We leave her to herself. We know that she’ll come out of it at some point to see what’s happening or act out a bit of the TV show that’s on in the background. Her attitude is more important to us than her actions. We find ways to enter her world and to get her into ours. There’s no point in forcing it.
The secret world of our daughter’s mind creates a disability only where others expect her to behave the same as everyone else. I ask this: does anyone actually behave the same as everyone else? Her mind’s a mystery in the same way my son’s, mine, or my wife’s was. Her mystery maybe has a different answer and is far more complex, but the journey to find the answer to this mystery is one every parent is ready for.
I guess what I’m saying — and I won’t speak for Danielle here because I think she got this much quicker than I did — is that I learned that in order to come to terms with my daughter being autistic, I had to come to terms with how I defined parenting. If I defined parenting as a script that is followed a certain way, then an autistic child is a challenge and off-putting and a stressor in the ways I’ve heard said. However, I realized that if I simply redefined parenting as being the best possible guide for my children in the way each needed it most, I was freed from the script. I found that it was the script — that suburban and public-mind driven set of rules for parenting — that was damaging me, causing me stress, creating a challenge, not my daughter’s autism. She is only defined by autism inasmuch as it is the label for her introspective avoidance of eye contact, her lack of vocabulary, etc. Her sense of humor, artistic drive, intelligence, love, smile, desire to wear pretty things and make them dirty outside: those are her. Those are who she is. If autism is then only a facet of her being, then dealing with it should only make up a facet of our parenting style.
And so it has.
It’s not easy, though. There are many opportunities for depression and confusion to set in. Idle conversations in public about the behaviors of toddlers, pictures of children looking directly at their parents, first words, first songs: all of these things are constant reminders of what our daughter is not doing. Reminders of why the world will try and brand her as different or “special” or one of the thousand other labels used for people that are harder to understand. All of these things work to undermine parents like Danielle and I. Parents who raise a child, not a syndrome.
We will persevere, though. We will find certain keys to communication. Keys to understanding our daughter and to helping her understand us and our world as much as possible. My daughter has autism. We are raising a daughter.