Wondering what happens when they grow up…

It might not be the wisest thing for me to do, writing this morning before a shower or coffee or when I’m still utterly wrecked by the engulfing sad of a beautiful book I read yesterday. But here I am anyway.

The first week with the little kids was every bit as difficult as I had imagined, but more fun and filled with much more learning (by me if not the kids) and with much more heartbreak than I had ever imagined. I have three more weeks with them before the end of the summer and I am still laden with fear and worry, because I’m not sure how I can do better with them. And I need to do better [more on this another day, promise]. Thank the merciful heavens for my assistants, who know everything and are wonderful!! I would have given up without them…

So, why the heartbreak over these little ones? Because I can’t help but wonder about what’s going to happen to them as they grow up. School will be hard enough, and it will be filled with adults who are trained to help, adults who are fundamentally kind and dedicated and willing to work with them. Yet even with all of that trained dedication, school is going to be at best a struggle and at worst a battleground. And then what? They age out of public school and into . . . what? Yes, in many cities, there are programs for adults with serious cognitive disabilities, but they are relatively few and not usually well funded or well staffed. We spend, as a society, so little on programs for adults with moderate to severe disabilities. And families are not always able to expend the time, the effort, the enormous amounts of money necessary to care for people with such profound deficits.

I keep thinking of my dad’s older sister, who suffered severe oxygen deprivation at birth and was profoundly disabled as a result. She never spoke, she never walked without assistance, she never cleaned herself or used the toilet or fed herself or anything that we think of as a necessary life skill. She was given a short life expectancy by the doctors, who had seriously underestimated the depth of love my grandparents had for her. Instead, she lived into her sixties, and, with the exception of a few years in a nursing facility, she lived her whole life with my grandparents, and then, after my grandfather’s death, with my grandmother. My grandmother lived her love for Alice. She changed her diaper, dressed her, kept her clean and comfortable, she slept in the same bedroom with her, she ate every meal while simultaneously feeding Alice. She took Alice with her on all her errands and shopping, talking with her the whole time, treating her with the gentleness, dignity, and love that every human being, regardless of ability, deserves. Grandmother never complained about any of this. She didn’t sigh or whine or act depressed or stressed or anything like what most of us do when we are even slightly inconvenienced. She simply did what she knew was right, and she loved her daughter without reservation or shame or regret. Grandmother was a rare and beautiful human being, the like of which I’ve neither seen nor met anywhere, anytime else in my life.

Love does seem to be the answer, yet love needs practicalities to be shown, I think, especially with the children I’m working with this summer. Care must be provided, plans made and implemented. But I don’t know how and I don’t know what. I feel helpless in the face of this tremendous need…


About mizmonk

Thinking about it. I am not my job, but I don't do much other than work, so . . . wait, what was the question again??
This entry was posted in Education and all that, Family and tagged , , . Bookmark the permalink.

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