It’s been awhile since I’ve sat down to write. I’ve been spending a lot of time processing information. I’ve been processing since April 26.
April 26, 2013, the day the words Autism Spectrum Disorder officially entered our world.
I returned to my desk at work late afternoon after a whirlwind of meetings and a team lunch to find an email sitting in my inbox from the clinical psychologist (Dr. K) we had visited a week earlier. I opened it expecting a question or clarification from Dr. K. It wasn’t a question. It was an email indicating that Madeleine had a provisional diagnosis of Autism Spectrum Disorder.
I’m still not quite sure what it felt like to finally see those words. In all honesty, I didn’t feel much except a surge of adrenaline that had my hands shaking. I was not surprised, but I also wasn’t expecting it. My supervisor let me leave work a half hour early, because I couldn’t concentrate, and really, just wanted to be near Eric. I’m not sure why, but the words she said to me just burned into my brain, “Go home, be with Eric, and enjoy your weekend.” I don’t think I’m ever going to forget those words.
My commute was just long enough to allow myself a good cry. I wasn’t crying because I was sad. I wasn’t crying because we had a diagnosis. I’m not really sure what the exact feeling that was attached to my tears, except I knew that it was my body releasing all of the frustration of the previous 22 months. I felt like a huge weight had been lifted from my shoulders. In a sense, I felt a new kind of freedom. Someone had heard us.
I’ve read a lot of blog posts about others’ experiences or thoughts on “diagnosis day”. Some really great reads I’ve found are here, here, and the one I connected with the most is here. My experience is not quite like anything I’ve found online so far, which I guess is to be expected. Each family has a different journey, including diagnosis day. What I did find in each story was a hidden gem that I connected with, and that allowed me to feel connected to parents I have never met.
I think that our process began when we first saw the words “Suspected Autism Spectrum Disorder” and we’ve felt any emotion you could name since then. What I find the most interesting, is that we left our assessment process feeling more positive than we had felt in a long time. Five days later when I read Dr. K’s email, I felt more at peace than I had in over a year. We have a name to describe our experience, and, although the label doesn’t change much in terms of who Maddy is, it does give us access to a world of information that applies to Maddy. We will be better able to fill Maddy’s toolbox with the most appropriate tools, and she will thrive.
Our therapists often very correctly tell us that it’s not the label that’s important – and I agree with them. You don’t need a label to identify and work with strengths and weaknesses. But, I gotta tell you, as a parent, that label sure brought me a sense of inner calmness that I can’t eloquently describe to you.
I do have some feelings about the diagnosis that don’t exactly pertain to the diagnosis itself:
- I don’t particularly like that this diagnosis has tied us to a longer term investment in inconvenient therapy sessions, daycare/school meetings, and extra life challenges as Maddy is growing and learning.
- I am angry at how the public system treats families, and frustrated more than ever by our two-tier system that prevents many families from receiving the support they desperately need.
- I’m not particularly fond that we’re now part of a world that is full of conflict (philosophical, theoretical, and diagnostic…). We’ve already been exposed to some of the politicized aspects of autism already, and it’s not exactly a walk in the park.
- I’m not happy that Maddy will have to live in a world where some people do not accept, or even tolerate, differences. The differences that make the world the interesting place that it is.
- I’m really not thrilled that I have to be more assertive than I’m comfortable by nature, but I am willing to concede that this might be a good thing.
You know what’s not on that list? Anything about Maddy being on the autism spectrum. All of those things I listed could be changed without changing who Maddy is. The public system could be much better at working with families, people could be kinder to one another and acknowledge that different opinions about issues related to autism are okay – we don’t need to fight to be right, the world could become more accepting (not just of people with autism, but of everyone), and, well, I could learn to be more assertive.
If all of those things were to happen, my life would feel a lot less stressful without changing the daily challenges that our family might be working through, or changing who Madeleine is.
We’ve decided to make the Walk Now for Autism Speaks event a family day to mark this important step in our journey. I know that Autism Speaks is one of those hot button issues in the autism community, but we’ve decided to stand with them on June 2. If autism is a cause close to your heart, or you have a few extra dollars looking for a donation home, you can find our team here: Movin’ for Maddy!
Diagnosis day has been a great reminder to us of how lucky we are to have friends and family who are accepting of all kinds of differences in people. Maddy couldn’t ask for better (great) grandparents, (great) aunts & uncles, cousins, second cousins, or family friends to support her with the love and respect that she deserves. We know that everyone will be waiting patiently with us to see the amazing things that Maddy will do.