There are parts that I relish, like where the form asks about social abilities. I write that Max is one of the most friendly, cheerful people they will ever meet. "Participates and plays well with others"—check!
For "Communication," I check off "single words" and "attempts words," which are sandwiched between "uses full speech" and "non-verbal." I note that although at times Max can be hard to understand, he makes his needs known, and that he will be coming to camp with his iPad and speech app. Elsewhere on the form, I make it clear that he prefers to be called "Fireman Max."
For "toileting" I note that he needs partial assistance. This, too, was hard won, and four years later (we finally made it happen during the week after Hurricane Sandy when we were holed up in a hotel) I remain grateful that Max mostly uses the bathroom on his own even if certain parts remain a challenge.
And then, I get to "Dressing." And once again, I am checking off "Needs total assistance." And it makes my heart hurt, because every year, I check that off. Max does well with shirts from the Tommy Hilfiger adaptive clothing line, but otherwise he can't put on shirts, pants, socks or shoes on his own. I'm planning to have his home OT focus on pants in upcoming months.
And then, I get to "Bathing/Personal Hygiene." And once again, I am checking off "Needs total assistance." Max can more or less run a washcloth over his body, but someone has to pour the body wash onto the washcloth because he can't manipulate the bottle to do it. Same goes for shampoo. Reaching his hands up to his hair to suds up is hard for him.
And my heart is hurting. But still: I hope.
"He cannot yet dress himself," I write.
I feel the need to say that. Because who knows what progress he will make this year. Maybe, just maybe, come next winter I will be checking off "Independent" the entire form through. Really, though, there is no deadline. If it takes Max the next decade to totally dress himself and/or use the bathroom on his own, so be it. Progress is progress, no matter how long it takes to happen.
And if doesn't happen, well, my heart may continue to twinge when I fill out forms...but I will also be reminded of how far he has come.