When Arizona was diagnosed with sensory processing disorder and “autistic-like” behaviors in Spring of 2009, I didn’t quite know how to tell people what was going on with her. Because it wasn’t initially a definitive autism diagnosis (a fact that I felt proud about, to be honest), I had a hard time explaining what was going on with my child.
Sometimes I told people she had some developmental challenges that were fixable. Others I told she had a late start in life, but that we were effectively playing catch up and that all would be well. Looking back, I downplayed it a lot. Certainly, I felt embarrassed of my child’s “disabilities” largely in part because I thought it had something to do with the way I conceived, carried, gave birth to and ultimately parented her.
Eventually though, it became apparent that Arizona’s special needs were not something she was just going to “outgrow.” She was diagnosed, definitively, as being on the autism spectrum, along with ADHD and some other fun side dishes. She became a candidate for special education services and resources through the school district due to her eligibility of autism. She was getting a lot of help that she needed.
Still, though, I wasn’t sure how to bring up her autism diagnosis. Is it something that would cause her more fear; realizing she was different and that her brain didn’t work like her peers? Would she use her diagnosis as an excuse for not doing work and what she needed to do? Would it put her into a depression; realizing she had a disability?
And so, I decided to wait. We often talked about her challenges and also about the things she did really well. She knew having a “helping teacher” (BII aide) at school made her unique to the other kids. She knew her brain worked differently than her peers, especially when unexpected things happened (fire drills, loud school assemblies, winning awards).
My friend Nancy encouraged me to let Arizona bring it up herself, in time. That’s how it went with her now 12 year old daughter, Danielle. And so I waited. And I continued to be open with Arizona about her challenges, differences and “super powers.”
About a week ago, we were reading one of her favorite stories, “All My Stripes” – a tale about a zebra with an autism stripe who struggled with various challenges throughout life. Even though we’ve read the book together a hundred times, Arizona stopped during the story to ask me, “Mama, what is AUTISM?” So, I explained to her what it was. And almost like a light bulb going off, she looked at me and said, hopefully and inquisitively : “Mama, do I have AUTISM?”
And, I smiled back at her and said, “Yes, in fact, you do!” And she said, “Oh wow, Mama … then I have a very special brain, right? I have a magical brain with super powers!” And I said, “Yes you do.” She pondered a little more and said, “Um, but is it a bad thing mama? To have autism?” “No baby girl, it is an amazing thing to have autism.”
And she smiled and let it sink in and wondered why she was given these special powers. “But Mommy, do you have autism?” “No honey, I don’t,” I replied. “That’s okay mama, you still know how to take care of me.”
And yes, I hope I will always do right by her. It’s a new experience for both of us, learning and growing in the uncharted territories of this unique journey.