Oh, good grief

Yesterday, I attended a "Special Needs Resource Fair" presented to mark the opening of a special needs resource library at our local Jewish Community Center. There were to be tables with information on services for children with special needs, and a keynote address which, according to the handout I got from my kids' school, was to be on "Words, Strategies and Wisdom to Help Parents Deal with the Challenges of Raising Special Needs Children." And can't we all use a few of those every now and then?

Turns out, though, that the speaker only had one strategy: acknowledgement of the crushing, unresolvable grief that all parents of children with special needs live with. Excuse me? Her theory was that all the problems between parents and professionals arise because parents are acting out their grief in some way -- through denial, maybe, or projection -- and professionals are reluctant to acknowledge the poor parents' enormous sadness, and just assume they're trying to be a pain in the behind. She scoffed at pediatricians who say parents should find a way to accept their child's condition and resolve their grief, because the grief is UNRESOLVABLE. She gave examples of parents demanding some silly right or other from the school system, and advised therapists or principals to reach out to the parent and say, "You must be feeling very sad about your child." In her world, the parent would melt, feel understood, and immediately back down. In my world, the professional would get smacked upside the head.

I don't know, maybe she's right about the grief -- for some parents. For myself, I don't think I'm in denial when I say that grief is not the dominant mode of my existence with my challenged children. I may cry when they have a setback or when a Child Study Team member makes a big deal about how far behind they are, but in no way is unresolvable grief the driving force of my life. Maybe that's because I deliberately adopted children with special needs, and so had a head-start in the acceptance game. That doesn't mean I had any idea going in how completely those special needs would take over my life, and how involved I would get in behavior management and doctor management and special education management and reading every book about neurological problems, learning problems, behavior problems, language problems I could get my hands on. But I didn't start from a place of expecting normalcy. So perhaps people who do -- who give birth or adopt dreaming of a normal child and normal development and normal lives -- do indeed feel grief as a constant weighty presence. But is that ALL they feel? Is there no joy, no pride in hard-fought accomplisments, no righteous indignation at insensitive professionals, no heartfelt advocacy for the legal rights of our special children? Is it all just the acting out of grief?

The speaker seemed to feel it was, and when the program went on into a movie in which parents talked about how sad they were, I used the cover of darkness to get the heck out of there. And run back home to my kids, who always find a way to cheer me up.