I had a good advocacy moment recently. An equipment representative at work was in town, and we went out to lunch to discuss some new stuff he wanted to show me. During the course of lunch, we were chatting about our kids, and he began telling me a couple of stories about his 9-year-old son’s recent acts of compassion, and rightly bragging about his son.
As the conversation continued, he saw on the TV at the restaurant a story about a 10-year-old with terminal cancer who was featured during ESPN’s pre-game show for Monday Night Football. I don’t watch football, so I had not seen this story, but he was telling me about it, and it’s pretty much your standard inspiration porn story. He started going into his analysis of the situation/story, and said, “Can you imagine that? Can you imagine being his parent? Having to watch your kid go through that many surgeries? Having to answer the tough questions that kid no doubt has? Having to watch your kid struggle to live a normal life?”
I was instantly transported back to February 2014, when my daughter Lucy had to have heart surgery at 2 months old to fix her patent ductus arteriosus, to the several procedures she has had since then, to all of the therapy sessions, to the meetings with the Children’s Developmental Services Agency, to our recent IEP evaluation meetings. For about five minutes, I let him continue on his track, answering a quiet “Yes” to each of his questions, but saying nothing more. Finally, I could be quiet no longer, both because I think he was thinking I had zoned out and wasn’t interested in his story, and because I started feeling like had to stop him before he said something unintentionally offensive.
I dropped the bomb on him. “Yes, I can imagine that. All of that. My daughter has Down syndrome, and had to have heart surgery at 2 months old.”
He instantly started the routine I and many parents of special kids are familiar with: He knows someone with Down syndrome, they’re doing great, they’re always so happy, it takes special parents, etc.
Then the questions came: Is she doing OK now? Do you know if she’ll have any more health problems? Do you know what she’ll be able to do? How do you and your wife do it; how do you deal with her disability?
Yes, she’s doing great now. She will probably have more health problems in the future, but I don’t know for sure what will and will not happen. Do you know what health problems your kid will have in a year, five years, 15 years? I don’t know what she will ultimately be able to do and not do, but we encourage her to work on what she is not good at, so that she can get better at it, just like any good parent.
Did you know when your boy was 3 what he would be able to do at 9 years old? Do you know what job he will ultimately hold? We treat her like a typical kid, but get her the help she needs, and just like any other parent, there are things we do great, and things we look back on and say, “We could have done better with that.”
She is more like any other kid in her class than she is different, and we are just like every other parents on the planet.
In the end, I felt like I had expanded his mind just a little bit, given him something to think about, and done my part as a proud dadvocate. Every day can present an opportunity for advocacy. My kid is awesome and so is yours. Take the little opportunities to change the minds of the people around you — friends, family, co-workers, random people in the grocery store. With the support of these people, bigger changes can be made in the world our kids are growing up in.
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