For all of March, The Mighty (an awesome blog about living with disabilities) is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? I’m planning to submit this essay. What do you think?
I know, right? I’m just as surprised as you are. If I had been asked to write this letter a few years ago, it might have started out more along the lines of “f*&ck you”, not “thank you”. Amazing how much your perspective can change in just three and a half years.
That’s right. It’s been three and a half years since you first officially entered our lives. Three and a half years since my son was first diagnosed “on the spectrum” (pervasive developmental delay- not otherwise specified).
A lot has happened in three and a half years. My son has grown and learned and changed. I’ve grown and learned and changed. The others members of our family (my husband and my daughter) have grown and learned and changed as well.
This morning, I was dropping my kids off at school. We stopped outside my son’s classroom so I could help him change from his boots into his sneakers. We got one shoe on successfully, but just when I thought we were finished, he looked me in the eye and said, “Mom, my shoe is uncomfortable. Can we try again?”
Let me break that down for you. He looked me in the eye. He spoke to me using words. He used those words in a calm voice. There was no yelling. There were no tears. The uncomfortable shoe remained on his foot as he waited patiently for me to respond to his words. It did not get yanked angrily off his foot. It did not get thrown across the hallway. It did not get used as a weapon against me or anybody else.
As the mom of a child on the spectrum, I see my son face challenges every day. His brain is wired differently, so there are many things that come easily to others (making eye contact, using words to express feelings, remaining calm in a stressful situation) that are challenging for him. And you know what, autism? That used to make me really, really mad at you.
I’m not going to lie, I’m still a little mad at you for all the challenges you present to my son. It’s not fun to always be thinking and trouble-shooting about how the little bumps in the road and unexpected schedule changes are going to affect our predictability-obsessed little guy. But I’ve gotten to the point where the joy I feel in witnessing my son overcoming his personal obstacles far outweigh the stress of those moments.
So now I’ve told you about the challenges that are linked to my son’s neurology. But, that’s not all there is to you, is it, autism? That same challenging neurology that makes some situations and tasks so difficult is also at the root of my favorite things about my son. The way he vibrates with bouncy, flappy excitement when he’s engaged in an activity he loves. The way he explodes into giggly, chortling belly laughs when he finds something funny, even when it’s something he’s seen or heard a million times. The way he gives hugs that are so powerful he almost melts into me. The way he says, “I love you, mommy” with such complete devotion it leaves not one inch of doubt.
And so, autism, I can safely say that while I don’t enjoy the ways you make my child struggle, I can appreciate the satisfaction and pride that comes with seeing him overcome obstacles. I can appreciate the joy that comes from small accomplishments that I might have overlooked if they hadn’t been so hard-won. I’m grateful for the opportunity to love someone who engages in the world in such an intense and uninhibited way.
And, I’m grateful for the way you’ve helped me grow and learn and change over the past three and a half years. As I’ve done what I’ve needed to do to help my son be successful on his unique path, I’ve become more open, more flexible, and more patient. I’ve learned to accept and even embrace things I know I can’t change. And, I’ve learned to passionately advocate for things I can change. I’m proud of the person I’m becoming, just as I’m proud of the person my son is becoming.
And a lot of that growth is because of you, autism.