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.
I enjoyed reading this post – I love your attitudes and impressions of others. Nice response to the award.
Thanks, Heidi. As an adult I continue to learn better responses to people and situations, especially working at the public library.
I had a cousin who was several years older than I was who had Downs Syndrome. She was the most loving individual as a result she and I were very close. Her parents worried about her if they died first and in her 30s found her a great group home to make the transition easier on her while they could still visit her and ensure the home was the right fit. She lived until she 53 and died only weeks after her father, who ended in the same nursing home together.
we as a society do have a long way to go, but like the conversation you heard, many more people are seeing that a special needs child is still an opportunity to love and be loved.
in my own experience, I was born with Muscular Dystrophy, my children escaped exhibiting any of the symptoms but could be carriers. The MDA would freely test my sons and their wives to see if they were carrying the misshapen chromosome, but neither my sons or their spouses wanted to be tested. Their reasoning being that they wanted their children and would not terminate should their child inherit this. They have that much love and acceptance, it still amazes me.
Thanks for telling me about your situation, Lois. I think when families have more experience with people who have disabilities, they become more compassionate.
Very true Dar.
I love the photos, Dar! We had a similar series on buses here captioned,, “Don’t dis my ability!” I really like the suggestions for enquiring after other people’s children in a sensitive and open way.
Libraries have an important role in helping to create an inclusive community. I always think of that when I see threats of funding cuts to our local library!
I think libraries are one of the few places that people of all ages and abilities are in the same space together (without having to buy anything) – other than free festivals, of course!
If only I felt so welcome in our local libraries – some of them are so ‘cold’ feeling! I have to agree with others Dar, you really are very mindful and sensitive. You carry yourself so well!
At least I can cultivate that impression on my blog, LOL! I think some of it is on-the-job experience dealing with people. When I was younger I was shy and I thought it was respectful to say nothing (so that everyone could maintain their privacy) but now we really do try to be welcoming at the library and 95% of our customers love to chat…if anything, we know too much about them!
lovely post and I love the pics! I have a cousin with downs syndrome and my husband supervises a lot of disabled workers each day in a supported workplace, his clients bring him a lot of joy and it’s great to see attitude changing in general to what they were when I was younger. People have so much to offer the world if we will just open our eyes to see the individual, not the problem.
Thank you – I agree!