I spent a lot of time thinking about my son’s future over the past few days. My son’s future kept me up to 3am on Wednesday, ran me up and down a mountain at high noon yesterday, and thankfully, led me to dear friends who let me anxiety-vomit all over them.
What exactly am I so worried about?
I didn’t know.
I ran down my list. Am I worried whether my son will get through high school? Whether he will one day work? Whether he will live independently? Money? What happens when I’m gone?
Nope. Valid concerns, but these are concerns I can handle. These are problems that just need a solid plan, and I’m good with a plan.
It took me to the top of that mountain yesterday to figure out what I was really worried about. Sunburnt and winded, I realized what scares me the most about autism.
I want my son to experience being connected to other people. I want this more than anything else in the world. Not just a sense of community and well-being, I am talking about the feelings, the connections, the laughing-crying-loving-yelling range of human emotions…because of someone else.
One of my high school teachers once told me that an awful experience is better than no experience at all. Through the drama queen tears of a fifteen year old girl, I looked at him like he was high.
Now I get it. I absolutely get it. It took me twenty-five more years and an autistic child, but I get it. We are working so hard on my son’s destination, but it is the experiences along the way that combine to make a life. It is the experiences with other people that stick together and litter your brain with memories. And unlike eye contact or stranger danger, I can’t teach this.
I want my son to have that butterflies-in-his-teenage-stomach feeling of taking a girl’s hand in a dark movie theater. And I want him to know what it feels like to try to play it cool and not smile when she lets him.
I want him to feel his heart swell with pride when someone tells him that he did something really, really well.
I want him to have that one friend that he can be insanely goofy with — the hilarious, devil-may-care friend that makes him laugh until he cries.
I want him to get picked on a little bit and feel that knot in the pit of his stomach so he learns how to treat people.
I want him to walk across a stage – I don’t care which one – with a cap and gown on, and feel, not just hear, but FEEL that his family is cheering their freaking heads off.
I want him to hate me when I take away his phone, I want him to slam his fist into a wall when someone he trusts wrongs him, I want him to fall in love, I want his heart to break, I want him to know that when I say “I love you,” this is more than just a phrase.
I want my son to experience life as only those who are connected to others can. This is what autism threatens to steal from my son. This scares the hell out of me. It makes my heart hurt, and is robbing me of sleep. And yet, here’s the kicker … it’s better than no experience at all.
Rebecca Masterson is a writer, speaker, and an advocate for children. For more from Rebecca, follow her on Instagram.