How I Wish You Would Respond When Your Child Asks About My Child

My husband and I wanted to make sure that we set the tone that we do not believe Down syndrome to be a bad thing, it’s just different.  We feel that difference is something to be celebrated.

Last year, I saw a heartbreaking video of a dad, sitting in his car with tears running down his face after hearing another parent respond to his child’s question about what Down syndrome is.  The dad responded, “It’s an illness of not knowing anything.” Really, is that what Down syndrome is?  This dad didn’t know what to say and then gave the next generation the knowledge and thought that people with Down syndrome will not know anything.

Sword to the heart.

I’ll say it again, the hardest part on this journey of raising a child with Down syndrome is NOT that my child has Down syndrome, it’s the way the world views people with Down syndrome.  That I have to defend that my child’s life has worth and value.  For those that know and love Jack, they know he’s made a positive impact on those around him.  Who are we to say who’s life brings value and who’s doesn’t…and what are we using to measure?  I know a lot of very intelligent people in the world that aren’t making a positive impact on our society.  Yikes.

Parents, it starts with us.  Our kids are curious.  Honestly, how can we expect kids to learn and talk about it respectfully if we don’t model to them what it’s like to notice differences and encourage us all to learn more.  I would be more than happy to have a person come up to me and ask my son what his name is.  I might have to help him recite his name because he is working so hard on his speech, but IT IS COMING and we are so proud of him.  WE ARE PROUD OF HIM, just like you’re proud of your child’s accomplishments! If you showed interest in him, you would be communicating to me that you see him, not his diagnosis.  He’s a child that laughs, learns and  loves…his family, cars, music, dancing, and going to the park.  Sound familiar to your child?  Yes, he learns differently, at a different pace than most, but we love him for him.  We don’t want your pity, we want your friendship, and in any good friendship, we will learn a lot from each other.

On a flight back from an unforgettable family vacation in California this spring, I was sitting in the same row with a father and his teen (or early 20s) daughter.  Jack was in the seat in front of us sleeping on my husband’s lap.  I was wrestling my 22-month old daughter from running up and down the aisle of the aircraft when I heard the girl whisper to her father, “Does that boy have Down syndrome?” The father nodded and responded, “I think so.” “That sucks,” she expressed. Her father shrugged.

And that was it.  Another conversation ended with a few words and a lot of assumptions.  ‘Down syndrome, that sucks.’

Like I said earlier, we’re on the same team. I need you, and you need me. Let’s change this together. Let’s stop letting labels define us and our children. Not a diagnosis, not a disability. It goes deeper to knowing people. Behind each label is a person who has a lot to offer this world, will we give our kids an opportunity to learn from them?

Let’s do this together.