I’ve been working on setting up some new opportunities for my son, new therapies and other classes he’s going to try out. This always means I am asked to describe him on intake forms and in phone conversations, to explain his “level” of ability, his challenges and strengths, his preferences and dislikes. It’s a necessary evil, to attempt to distill my son’s attributes and needs down to shareable soundbites.
Semi-verbal. Developmentally delayed. Autism. Anxiety. History of self-injury (but better). Understands more than he can say. Can read. Sensory issues. Likes Pixar.
But no amount of questionnaires, recent evaluations, or interviews could ever provide a full picture of this kid, the picture that you need to really “get” him.
You just have to be here.
You have to see how, when I go into his bedroom in the morning to wake him up, he will often stick his foot out towards me off the edge of the bed. This gesture means either he’s hoping for a foot rub or he’s kicking me back out the door. I’ve got a 50/50 chance to respond correctly.
You have to witness how he only touches our dog to fix an ear that has flopped backwards, or to wake her when her snoring gets too loud. But he waits for her to make sure she’s coming on our morning drive.
You have to ride along on our regular commute, to watch how he sits in the front passenger seat, monitoring my driving habits. For instance, there are several points on the drive where I need to change lanes to the right, to prepare for an upcoming turn or freeway exit. I don’t know if he understands that when I turn my head, I’m checking to see if the lane next to us is clear, but he knows when I’m about to look his way. Just before I do, he turns his face to greet mine. Multiple times on every drive, it’s our little daily dance.
I can tell you how his musical tastes bounce from the ABCs to AC/DC. Or how a written text cue holds a power to motivate him that no verbal instruction can match. Or how he will chew the most bitter tasting tablets to take his medicine every day, but if you offer the wrong brand of pizza, he’d rather go hungry.
But you have to experience for yourself how within the same hour that he is yelling and stomping and taken over by a stress he can’t describe, he can be smiling and singing and asking you to scratch his back.
If you came to our house, you’ll see that he doesn’t like it if you stand with your hands in your pockets or with your arms crossed. You may not even be aware you’re doing it, but he will let you know.
If you stay awhile, he will help you close doors and drawers, tuck in chairs under tables, replace the cap on your pen, and return the TV remotes to the side table (whether you want his assistance or not).
If you are new or interesting to him, he’ll look you right in the eye, sometimes within inches of your face.
And if you seem friendly, he may hold out his hands to you and ask you to “shake it.” He’ll be disappointed, though, if you try to give him a traditional handshake. He’s looking for a secret maneuver that his grandpas and other favorite people know, which involves one of your hands clapping between his two. Learn how to do that and you will be rewarded with a huge grin, and a guarantee to repeat that exchange at every subsequent meeting.
See, you’re not going to get all that from these standard intake forms.
You just have to be here, and get to know him.
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