When you are the parent of a child with special needs (or two children, in my case), you become a member of a secret society. You had no idea you were to be tapped for induction into this group, and you’re pretty sure you wouldn’t have said “yes” if you’d been asked beforehand if you wanted to join. Nevertheless, you throw your heart and soul into the doctrines of this new fraternity – education, advocacy, and research. You begin to preach the virtues of access to education, the significance of research, and the importance of advocacy. You put hours upon hours of your time into navigating the medical and educational systems in order to achieve the best possible outcome for your child. You do everything in your power to give your child what he or she needs. What you can’t make happen, though, is change in another person’s heart.
We’ve been very fortunate over the years to have had near-universal support and acceptance of our children (at least on the surface – if our friends and acquaintances had negative attitudes they’ve not expressed it within earshot). I’m sure that eventually we will face some ugly circumstances and some even uglier people, but so far we haven’t seen any sign of it – not, that is, with regard to Nathan or Sarah Kate specifically. I’ve blogged before in “The Dangerous Cliche'” about the uglier side of the special needs debate and those individuals who don’t value my children. It’s tempting to think that those people are “bad”, but I try not to think of them that way, because they are people – uninformed, perhaps, but still people. It’s very easy to lump faceless, nameless people into a broad category, but it’s much harder to do that with individuals that you know and love.
There was a boy near my age in my church when I was growing up that had an intellectual disability, and as a result of his sweet nature (reinforced by my parents’ strong values), I would never have thought it was okay to speak negatively about a person with a disability. Earlier this week in “Dare to Dream”, I blogged about the many occurrences this fall of students with Down syndrome being crowned Homecoming queens and kings. These students were recognized by their peers because their peers knew them personally. The school system allowed these students to attend with their more able peers, but the system didn’t crown them – their peers did. The students had relationships with these young men and women, and they acted based on those relationships.
Amy Julia Becker provided the following assessment in her blog, “Thin Places”, today, which sums up my thoughts in a very real and personal way:
Change happens through public policy, but it starts with relationships. A doctor who knows a child with Down syndrome uses different words to share a diagnosis of Trisomy 21 than a doctor who understands Downs only as a medical problem. A teenager who is friends with a person with Down syndrome thinks twice before using the word “retard” to joke with a friend.
There are days that my head spins with “what if” and “will he ever” and “how will we” scenarios. I feel that I need to take action – BIG action – to change the world. But on other days I realize that I am already doing little things that, when taken together with the little things done by moms like me all over the world, will move our society forward.
The bottom line: it starts with personal relationships. Love really IS the answer.