When Atti first started therapy here in Modesto, I told all of the people we came in contact with that I wanted him walking and in a mainstreamed classroom. They all tolerated my vision, but not a one of them shared it. When he was younger his therapists were totally confident that he’d walk and encouraged all my lofty thinking, but here in Modesto they all just kind of changed the subject. I felt frustrated when I felt a lack of encouragement, but I never even thought about changing those goals. Maybe the timing of when I expected them, but never the goals themselves. I just figured the therapists would catch up to what I knew my child to be capable of.
I was totally right.
The other day Atti was having a particularly productive day at therapy and his physical therapist said, “I underestimated you.” I ran my hands through Atti’s hair in a moment of pride and she said, “No. You. I underestimated you.”
The pressure is sometimes overwhelming. What I do for Atti now, and what I don’t do for Atti now, can not just affect the rest of his life – every parent can say that – but actually change the level of his disability. Making sure he gets to all the doctors appointments, the therapy, and following up on all the therapy homework – stretching, standing, exercising – it’s a lot. A LOT. And it’s the kind of work that is never done. Even when I’m doing something I’m supposed to be doing I’m thinking about doing more. It’s enough to drive you mad. But if you can find a way to bear up, the results are tremendous.
When I think about the opinions of Atti’s therapists, I’m not mad at them for seeing different outcomes. Atti’s PT has been doing this for decades. She has expectations based out of clinical experience and hard-won observation. She has had to watch as parent after parent eventually smacks up against the reality of their child’s limitations. She saw how much work was ahead of us and stacked that all up against everything she’d seen before and figured that Atti would gain some mobility, but would not have the future I planned for him. And no one was more delighted than her to be wrong.
Instead I’m kind of amazed. Marty didn’t underestimate me because she took one look at me and deemed me incapable. She judged me based on what she’s seen. My beating her expectations has just as much to do with our income level, my education level, the privileges we’ve enjoyed up to this point, the fact that I can stay home and attend to Atti pretty close to full time, the fact that he’s our only child, etc. as anything I’m bringing to the table. Knowing all of that is important because I still firmly believe that given the same set of support and advantages, anybody could do what we’re doing.
But that doesn’t take anything away from me. The fact still remains that I am doing it. I’m proud of my little guy every day he beats the odds, and I’m proud of me for helping him do it.