I Hear You: Traveling into the Mind of Autism and the Siblings Who Love Them
June 13, 2012 3 Comments
Recently, at the Autism One conference in Chicago, Virginia Breen, the mother of a 14 year old girl with autism introduced me to the audience. “Ginny” is an amazing mother. Her daughter does not speak, but she does use keyboards to communicate, so she collated her daughters written poetry into a book called “I AM IN HERE”. During my talk, now known as: “The Ruby Slipper Lecture”, I used Dorothy’s experience in the Wizard of Oz to help everyone understand what in incredibly exceptional event takes place as a child is taken into the World of Autism. In that lecture I told everyone that I have met some incredibly mean and nasty people – people who cannot think about helping children with autism – much like the Wicked Witch.
but then at the same time my journey with autism has been filled with amazing people – wondrous adventures in a way that has taught me so much about the love parents have for their children and more about medicine than I ever imagined.
In that way, I am on the yellow brick road with dear and trusted friends.
Most of whom have no idea just how wonderful they are, nor how much they teach me about life.
Elizabeth Bonker (Ginny’s daughter) is clearly the Scare Crow, the Tin Man and the not-so-cowardly Lion all in one (with a special touch of Dorothy just trying to get out of Oz, so she can go Home). Here is an excerpt from her book in Elizabeth’s own words:
I can’t sit still
What’s wrong with me?
My body is doing things
I can’t explain
My dignity I am trying to maintain.
People stare at me
When I rock and shake.
I don’t know how much
More I can take.
So much to deal with
Going on inside me.
I wish I could get better.
I want to be set free
From my silent cage.
Then she wrote this: “Some of the people at school who do not know me make me feel uncomfortable. They stare at me. I would not rock and shake if I could stop it. It just happens sometimes. I wish they could understand, but mostly I wish I could explain it to them.”
But my journey is connected to so many others that sometimes I just have to share the love that comes my way with others. This next piece is from Ensley; a not yet 11 year old who told me she is too old for dolls. I believe her. Having a brother with autism has matured her is amazing ways. She read Elizabeth’s book and wrote this to her. Her parents shared it with me and and after a few tears I asked Ensley if I could post in on my blog, thankfully she said yes.
I HEAR YOU – from Ensley
I love your poetry, it is truly beautiful. I think you are amazing because even though you cannot speak with words, you find a way to express yourself in ways that mean more than words. Your poetry is special because it proves to everyone that even people who cannot speak, have a voice.
I feel I understand the struggles you write about in your poetry because I have ADHD, and my little brother has autism.
Before I knew that it was my ADHD and sensory problems that caused me to behave differently than other children my age, I always felt there was something wrong with me. I felt left out, alone, and abnormal. Some days, I feel very out of control, like I am spiraling through a dark, endless hole with nothing to grab onto, and no one to stop me from falling.
I know my little brother can understand how it feels to seem so different from other people. When he is mad or frustrated, he starts hitting his head and stomping on the ground because he cannot find the words to tell us what is wrong.
Like you, I understand what it is like to be stared at. Sometimes my brother gets mad when we are out in public, and throws a tantrum. There have been times when people will look at him like he is a circus act. I wish those people could try and understand what it’s like to be in my brother’s shoes.
Even though disabilities like autism can feel like a cage, prohibiting you from spreading your wings, you do not allow it to, and I admire that greatly.
Keep writing your wonderful poetry. You are an inspiration.
I started work at 7AM and it is now 8:30PM – I have many failings – time management must be one of them, but I cannot stand the idea of failing these incredible and beautiful children. So each day I pray more more children get their ruby slippers and find their way out of Oz. May they all be blessed.