An article on the Psychology Today site earlier this month got me thinking about the line we walk as parents of children with special needs and advocates for cure and prevention. John Elder Robison, an adult with Asperger syndrome, writes:
There is nothing wrong with wanting to take away a disability. That's a great goal, and one I fully support. What's wrong is making something out to be "bad," and then failing to take it away; leaving us stuck with the "bad" irremovably bonded to us.
Robison's concern is autism advocacy that demonizes the disorder. Mine has been the way advocacy for Fetal Alcohol Spectrum Disorder has focused on prevention at the expense of helping kids already living with FASD. For prevention, you need to make the condition look as horrible and hopeless as possible -- but that makes parents resist getting the diagnosis and doctors reluctant to give it, despite the fact that early diagnosis is a huge protective factor. How do you make the case that it's possible for kids with FASD to lead successful lives, how do you appreciate the positive things about their personalities, without making it sound like alcohol during pregnancy is really not so bad after all? And how do you advise women not to drink during pregnancy without it sounding like, "Look at my kid. Good God, you wouldn't want to be stuck with that."
Though parents do so much to promote fundraising and advocacy and fights for a cure, it seems as though that job and the job of parenting are often at odds. Even with diseases that indisputably require a cure, is there a risk of making that all your child is about, or of making your child hyper-aware of how hard his or her life is going to be? I've read books about parents who were powerful advocates for their cause but had to neglect their ailing children to do it. Sometimes the big dragons become easier to fight than the little ones close to home.
Have you found a way to reconcile these dueling impulses? Do you find them to be at cross-purposes at all? Share your thoughts in the comments.
Photo by Kevin Lee/Getty Images