Recently, Beth and I were giving a presentation of what sensory integration is, how to recognize dysfunction, and some strategies that may help a kid feel more comfortable and successful in school and at home. It was an honor, and a lot of fun, too. I always get so nervous before speaking with a group, but most of that goes away the minute I open my mouth and start speaking into the microphone. Am I alone on this?
Anyway, not the point.
After the lecture, we were speaking to parents in small groups about autism resources in Maine, the finer points of special education law, and the rights and responsibilities towards students shared by parents and teachers.
A dad came up to me and asked me, in essence, how do you cope with the overwhelming suckiness that comes with having a child for whom every day aspirations and dreams are far out of reach. How do you embrace the suck?
My answer is always the same when I get asked that. Heavy drinking. It’s not true, but it usually gets a chuckle and breaks the tension inherent in asking that kind of question. Honestly, you never fully cope with it. I think everyone goes through a period of mourning regarding the life you had “planned” for your child before you were faced with life’s challenges along the way. That changes and grows over time just like your child.
I still get kind of choked up when I watch some of the other freshmen excel on the basketball court, or when they give a moving speech, or do something Jake will never do.
The more I think about it (or dwell – let’s be honest), the more I think you have to [insert cliché here] turn that frown upside down, or think of the glass as being half full. Right?
I don’t think it does anyone any good to look at any child as a list of deficiencies. Praise them and embrace them for what they CAN do, not what they CANNOT do. Love your child for who they ARE, not for who they AREN’T. I recently posted a quote on Facebook from Hemingway. “There is nothing noble in being superior to your fellow man; true nobility is being superior to your former self.” I’d make everybody miserable, including Jake, if I focused solely on the ways he’s different or doesn’t stack up to his neurotypical peers. What matters most for Jake is that he’s growing, and is consistently hitting milestones “former Jake” couldn’t.
Jake vs. your average freshman is always going to be a losing situation. Jake vs. former Jake is all that really matters. That and helping him to see the world in that light also. Jake thinks he’s a rock star. You know what? He is. He’s doing well in school, and he feels successful. He has always seen his autism as a super power. Just yesterday at the ASM’s Walk for Autism, he asked me if Beth and I gave him his super power right when he was born. I assured him we had. He and Liv were watching a Celtics game that was highlighting autism awareness. Liv mentioned to him that that was sweet. He said, “that’s my super power – not yours!”
I have a happy kid who feels supported and successful in his endeavors. When he thinks about how different he is from “normal” kids, he sees himself as the clear winner. He’s the one with the super powers. I think he pities the rest of the world for being ordinary. How many of us can say that? How can I be too down about that?