And now for something completely different. Recently Meredith from the blog Looking Up with Down Syndrome, a kick-ass parenting blog, nominated me for a Liebster Award. Instead of answering the list of Liebster questions, I thought I would post about my interactions with people I’ve encountered who have Down syndrome, and their families.
My very first experience of meeting someone with Down syndrome wasn’t a meeting. When I was a kid, my great aunt had two sons, one with Down syndrome. We were all were part of a large group of cousins and we all visited each other’s homes. Dennis was a little older than me, and seemed less mature, but he was big and strong for his age. I remember my mom, grandmother and great aunt having conversations about his future. They were worried that my great aunt wouldn’t always be able to care for him, and she worried about what would happen when she died. And, there was great sadness that people with Down syndrome had much shorter life spans than those without. There is a happy ending to this story. Dennis moved to a group home as an adult, where his life skills blossomed, and he lived a full life into his 50s. Much later, my mom told me that in those days, most children with Down syndrome were institutionalized and forgotten. I was horrified!
The next experience that stands out for me was the treatment of some boys at my high school. There wasn’t much mainstreaming at the time, so the school had a Special Ed class. Some of the male students thought it was funny to bait the guys in the Special Ed class. For example, they would tell them to go up to a girl and give her a kiss. Fortunately, their mockery was a complete failure. The girls befriended the Special Ed students and publicly berated the pranksters. Justice, YES! Although schools have far to go in promoting inclusiveness, they do try. My kid’s high school had a “Special Buddies” program in which students would pair up with another student who had special needs or an education assistant. They would just be friends and spend time together, but also specifically attend school events together, like dances and sports days.
I like to think that attitudes are changing. Recently I sat with a group of inner-city teen girls at the library where I worked and they were having a deep conversation. One of them was talking about her dad who was a caregiver for adults with severe disabilities. One girl asked another, “If you were pregnant and knew you were going to have a child like that, would you have it?” The conversation went round and round and eventually all three of them said that yes, they would have and keep their babies with profound disabilities. And who knows, maybe someday they will look back on that conversation and realize they could support each other as moms in that situation, and that community norms are changing.
When a mom does have a baby with Down syndrome, the reality can be quite different. You may know that 80% of children with Down syndrome are born to moms under 35, who usually choose not to have prenatal testing. Maybe a 1 in 691 chance doesn’t sound very high to you, but half a percent of babies have a chromosome abnormality and 3-5% have a birth defect or malformation of some kind (the most common of which is cleft lip or palate). No expecting parent wants to read up on all the possible problems a new born could have, but a little awareness would go a long way.
So would a little sensitivity. I was beyond sad when a former colleague of mine gave birth to her first child, who had Down syndrome, because as soon as others heard the news, they disappeared – they didn’t send cards or gifts, didn’t visit in the hospital or at home, and would not face her. To top it off, like many children with Down syndrome, Max needed heart surgery in his first year. Their second child, as usually happens, did not have any medical or developmental conditions.
I have changed my own actions as a result of my interactions with people of all abilities, especially when it comes to children.
First of all, when someone has a new baby, I ask them how things are going and try to just listen, hoping they will tell me if their child has a diagnosis or any developing health concerns. If they do, I will ask what they think is ahead for the coming months, in terms of check-ups and testing and procedures. I like to acknowledge the parent’s fears and offer whatever practical help I can. Otherwise, though – come on, there’s a new baby in the world! Congratulations are in order! The parents need all the same things every family needs, but especially, the ability to talk openly about their child’s abilities and development.
Whenever I speak with anyone at all who has a baby or young child, I never, ever compare them against a developmental checklist. For example, if someone has a one year old, I would never ask, “Are they walking yet? Are they talking?” There is nothing that stops conversation like a parent who feels judged because their child isn’t “advanced enough.” I usually make a comment about the child, such as, “Your baby is in such a good mood!” and ask the parent, “What does Sarah like to do these days?” Moms and dads universally like this question, and I’ll hear everything from, “Following her sister around” to “Sucking on her toes” to “Bouncing to music.”
I make a point of speaking up when people make jokes about abilities, and I always speak up whenever someone I know uses the dreaded R word.
I hope you’ll drop by Meredith’s blog – I love her latest post which is about how she used to rate everyone by their intellect.
Thank you, Meredith, for nominating me for a Liebster Award, and I know your blog will continue to open hearts and minds!
For further information, visit CDSS.