Over a year ago, The Mighty* published a few thought I had upon the diagnosis of DDR. I’m reprinting it here so that I eventually get everything I’ve written into one place – but also to reflect on if my position has changed or not.
No. It hasn’t changed. As DDR grows my position on HER talents only solidifies. Autism is a spectrum and more accurately is totally individual. We all have our own challenges – some of them get names and some of them are more difficult than others. DDR has her own challenges, too.
This piece articulates what is was to first be confronted with a label for those challenges. And I’m not just blowing smoke when I say HER challenges are actually her strengths. I digress though – I’m sure I’ll get into all of that at some point.
*The Mighty somehow mixed up our pictures with another family. So don’t think you’re on the wrong page if you click the link and you don’t recognize us.
I remember the details pretty vividly of when the therapist told my husband and me that our daughter was on the spectrum. It was morning. The office was dark. The couch was uncomfortable in that it was too deep to sit back on and still have my feet on the floor. The therapist held a clipboard like it was armor. I’m sure now she probably had to deal with a lot of defensive, incredulous parents before us.
This therapist had spent three hour-long sessions with DDR prior to today. Observing her. Questioning her. Trying to relate to her. DDR was 4 years old. DDR walked on her toes and flapped her arms. DDR rarely made eye-contact. DDR was not interested in changing from one game to another until the first game was completely exhausted. DDR talked in long run-on sentences that never had an end or seemingly a point. DDR played solo and not with any preschool mate. DDR hilariously used her name in first person.
DDR also learned the characters of the alphabet before she was 15 months old. She memorized most all Dr. Seuss books by the time she was 2. She memorized song lyrics after hearing them once. She showed an amazing amount of patience and tenacity with challenging crafts. She spoke like someone who lived many lives before and like she was born a 16-year-old. She loved to author her own stories and songs into recorders and would spend hours doing it if allowed.
When the therapist said “DDR has PDD-NOS or Asberger syndrome. She’s on the autism spectrum,” both my husband and I sat in silence. I remember the therapist going into some long explanations of how she arrived at the diagnosis along with some advice as to what we should do next and then asking us for questions. I remember thinking, “I wish I could think of a question.” It was so quiet for so long.
What was said next though is the moment that truly stands out for me. The therapist remarked that I was not crying or otherwise emotional (which if you know me is actually something quite odd) and that maybe we did not understand what she was saying. I slowly answered her. I said to her that she was telling us nothing that we didn’t already know. We knew our daughter and we knew that something about her was different from her brothers, from other kids her age. We were there because we knew “it”–we just wanted to know if “it” was something we should be worried about.
And then I felt stupid. I always knew DDR was different. I always knew she was exceptional. Why were we there to be worried? Why were we handing any kind of power to shape DDR’s thoughts about herself to relative strangers? It was like God came out of the clouds like he does in Monty Python and the Holy Grail and said to me, “Knock it off. Of course you being the guardian of this child is a good idea! Get on with it!”
That day, I handled myself with as much maturity and grace as I have ever in my lifetime. I don’t know where it came from (or where it’s since gone) but I thank the God in the clouds it was there. I wish I had had it in the months before we went and had the presence of mind to lose myself to DDR’s quirks rather than wondering if they were “normal.” I would tell myself if I could go back, “You got this.”
In the years and therapies that have followed the diagnosis, DDR is now 11 years old. DDR makes eye-contact. DDR rarely flaps her arms anymore. DDR walks on her toes but not always. DDR talks endlessly about fairies and computer programs and Kelly Clarkson lyrics.
DDR still insists on finishing what she is doing, but will take a break to eat dinner. DDR has written and published a book of her poetry. DDR acts in plays. DDR has a best friend. DDR no longer uses her name in first person. She doesn’t need to remind me who she is anymore.