Living In Oz: One Parent’s Story

By Kirsten Root

Hello. My name is Kirsten Root and I have two sons with Asperger Syndrome. My 4 y.o. was diagnosed about a year ago and my 3 y.o. was diagnosed four days ago. I am very new to the world of Asperger Syndrome, so today I wanted to talk about how I am making sense of it all. The first thing I have learned is that I can’t use figures of speech or symbolism of any kind at home. If I say “it’s raining cats and dogs” my literal-minded sons look up into the sky for falling animals. So, since my sons are not here today, I am going to go all out with the symbolism. Here we go. We’re headed to Oz.

We are all Dorothy. We always assumed we’d be living in Kansas, but then the tornado—the diagnosis—struck and we landed in Oz. We brought Toto with us. Toto symbolizes the healthy habits, hobbies, or friends we cultivated back in Kansas. Before the diagnosis, what kept you balanced? Was it yoga? hiking? getting enough sleep? Was it the women in your book club? your spouse? Now that we’re in Oz, and more stressed out than ever, we cannot short-change the things that keep us strong: when we take time to replenish ourselves, we are not being selfish!

Next we meet the Scarecrow. The Scarecrow symbolizes our brain trust. We need answers, advice, and ideas. I won’t dwell on this point because you are here at this conference, so you already get it. I do want to offer props to the cult of the waiting room. Has this happened to you? Your child is in a therapy session, and you are planning to catch up on e-mails or just close your eyes. But then it happens. You strike up a conversation with the mother or father sitting across from you and by the time your child comes out of her session, you’ve given and received great advice and information. I have learned that Scarecrows are everywhere, and I’ve learned to listen to them!

Next on our journey we meet the Tin Man: someone who can see into our hearts and knows what we’re going through. Let’s talk about The Public Meltdown that happens in the last aisle of the grocery store. People stare—some with kindness, and some like the woman who once said to me, “There’s nothing wrong with that child that a good spanking couldn’t resolve!”

If only all the strangers staring at you and your suffering, out-of-control child knew what you have already done to prevent or minimize this moment! That morning you checked to make sure all the tags were cut out of her clothing. You served strawberries for breakfast, of course, because Tuesday is strawberry day. You drove the same route to the grocery store, etc. etc. etc. But I have learned that what strangers believe doesn’t matter. I have learned that it is far more important to find some Tin Men who know exactly what we did that morning in an attempt to forestall the meltdown, and what we do each and every day. How we contort our lives in order to smooth a path for our children. How we bend so our children won’t break. I am lucky to have met some Tin Men. I have met Page, who took me to coffee after each tornado—each diagnosis—hit. And Gloria, another mom who is here today. I hope you all have some Tin Men supporting you.

Now it’s time to add the final companion, the Cowardly Lion. And who does the sweet, misunderstood Cowardly Lion symbolize? Our sons and our daughters, of course! Because it does look like cowardice, doesn’t it, when they refuse to go to school or ride the bus? When a birthday party is too much to handle. When a flushing toilet or broccoli on a dinner plate sends triggers terror. But we have learned how courageous our children actually are. Every day, we send them into a world fundamentally unsuited for them, full of sensory overload and incomprehensible social rituals. Every day we ask them to master the academic curriculum, the hidden social curriculum, and to do this under constant sensory siege.

Every time I fight for insurance coverage, or attend an IEP meeting, I remember what the world requires of my sons. I keep a quote by artist and author Mary Anne Radmacher in my wallet: “Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying ‘I will try again tomorrow.’” This kind of courage lives in all of us and in our children.

We have met all of our traveling companions and we’re on a journey through Oz, but how do we know when our journey is at an end? Unlike the real Dorothy, we know we can never go back to Kansas. I have learned to dream big, so for me, the end goes something like this:

I close my eyes and see my two boys about 15 years hence, in college, on the first day of the semester. They are dressed in relatively clean clothes, and although they both need haircuts, their faces and nails and teeth are clean. They have found their class, and have arrived a few minutes early, and they are talking to their new professor. “Hello,” they say, “I’m in your seminar this semester, and I have Asperger Syndrome. Some people need glasses to help them see, or a hearing aid to help them hear. Like them, I need a few small things to help me succeed in your class. I’d like to discuss this with you; when might be a good time?” Can you see how obsolete I have become? In my dream, when my journey has ended, I have stripped away every role I currently play in their lives and, one by one, my sons have taken over these roles for themselves: chauffeur, housekeeper, laundress, chief cook and bottle washer, social secretary, accountant and advocate. I will know that my journey has ended when the only job left to me is to love them. And here’s the strangest thing: Remember all of those other mothers, the ones we left behind in Kansas? They have the same goal! Just like us, they want to launch happy, independent children into the world. The journey’s endpoint is the same for the Kansas moms as it is for the Oz moms!

This journey will not be an easy one for us—or for the Kansas moms, either. But there is a very important distinction. During all the years that we, the Dorothies, will work to build our children’s independence, WE WILL GET TO LIVE IN OZ! We have this tremendous honor, the honor of raising our sons and our daughters, and we get to do it in a world full of quirky, beautiful, impossible things like talking trees, Munchkins, and cities made of emerald. And finally, everything I have learned makes sense. Of course our children expect to see falling animals when we say, “It’s raining cats and dogs.” We live together in Oz, after all, where monkeys can fly. How lucky, how fortunate, are we?
Speech delivered at AANE Annual Conference (Mothers’ Panel) on October 16, 2011

With thanks to Emily Perl Kingsley for her inspiring essay “Welcome to Holland.”