“Life is pain, Highness. Anyone who says differently is selling something.” (The Princess Bride)
I recently read an essay that really spoke to me. It appeared in the Summer 2010 issue of Brain, Child magazine. The essay, called Fighting Words, by Elissa Wald, is written by the mother of a young girl who develops a stutter. Although a stutter is not the same as autism, it can be just as socially debilitating. And the reactions of friends and family, as well as her own reactions to her daughter’s challenges, ring true and familiar.
When Wald tells people about her daughter’s stutter, often their first reaction is to tell them about famous people who have stutters and overcome them, or even used the disability to their advantage. They wonder if maybe it is a blessing and will provide the path to her greatness. It is the same with autism. People are always telling me about a person with autism who has overcome their disability and gotten a PhD, or was valedictorian or a champion surfer. Or, to take it a step further, done things they wouldn’t have been able to do if they hadn’t been autistic. Temple Grandin, perhaps the most successful woman with autism, sees the world in a particular way because of her autism. She would not be the same person without it.
Wald, however, does not view the stutter as a gift, something “meant to be” so that her daughter can find her true calling. I read so often about people who say they are blessed by autism. I’m glad they have found peace with that, and maybe someday, after I see all of the wonderful things Moe has accomplished, I will feel the same. More importantly, maybe Moe, will feel that way. But for now, I agree with Wald: “I don’t believe everything happens for a reason. I don’t believe every problem is an opportunity, or at least an opportunity worth the price.” I will certainly help Moe make the best of his strengths, but right now, at least, I would rather he could just enjoy his childhood and not have to work so hard for even the smallest accomplishments, like being able to jump up and down or say his own name.
Wald points out as well that no child really gets off scot-free. When I think about my own circle of friends and family, I can think of many examples of families who are suffering in their own ways. We are dealing with speech delays, Asperger’s, Down’s syndrome, feeding tubes, divorce and more. Wald calls this the “fellowship of suffering,” of which I now consider myself a card-carrying member.
It always amazes me that this isn’t a completely depressing thought, but actually quite the opposite. It helps me to not feel sorry for myself. How can you ask “why me?” if, really, it’s everybody? The fellowship is hardly an exclusive club. And because, as Wald comes to realize, “the whole world is hurting,” we can relate to each other. I read blogs about kids with all kinds of special needs, including Cerebral Palsy, deafness, and of course autism, though even with autism the needs of the kids varies widely. There seems to be not just a fellowship of suffering, but here in the blogosphere, a community of suffering as well. I didn’t intend to move here, but it turns out the neighbors are pretty cool, always willing to lend a cup of sugary advice or comforting words when you need them.
Wald’s husband states that “We will do everything we possibly can to make this go away….But if it doesn’t, then we’ll live with it.” It seems so obvious, right? But it’s the living with it that’s the hard part, the part that causes the suffering in the first place. But suffering also makes you act. It seems that my current challenge as a parent, or maybe as a human, is to find the balance between suffering just enough to keep moving forward but not so much that I’m paralyzed. Wald believes the point of being a parent is “not to forever keep adversity at bay…but to help one’s children feel at home in the human family.” For parents of kids with autism, no truer words have ever been said.
Sometimes the suffering club is the biggest of all, and sometimes you're the only one in it.ReplyDelete
I have lupus. I have moments where I have my pity parties and think "What did I do to deserve this?", but then I realize that without these trials and tribulations I wouldn't have ever been able to become the woman I am today. You'll be ok...you'll get through it...and even if it doesn't go away...you'll define it and not let it define you.ReplyDelete