We learned last week that Down syndrome has become a terminable disease. It doesn’t have to be like that. Families who receive a Down syndrome diagnosis in pregnancy or after birth need support, encouragement and resources. They need to hear “CONGRATULATIONS!” They need to hear that their baby is just as important and worthy as any other baby. Let’s explore some stories and resources that can help families process a diagnosis and feel hopeful for the future.

Here is a heartwarming, emotional story about a little boy named Leo. His family shares how emotional it was to maneuver the diagnosis and how support from family was so life-changing. There are some other really great videos (although some have strong language) out there, presented by adults with Down syndrome about the idea that we should be saying anything but “sorry” when a family finds out their child has Down syndrome. This video was produced by the Canadian Down syndrome Society — a society committed to providing accurate information and resources to families and advocating for people with Down syndrome. Since when has it been okay to say “sorry” when you find out a friend or family member is having a baby? It’s never okay.

I’ve discovered that there are so many organizations and resources for families. This highlights a significant need for families to have accurate information and encouragement along their journey. I’ve found some good resources, right here in British Columbia. The Down syndrome Resource Foundation provides services of all kinds for kids and adults with Down syndrome and their families. They provide peer support groups, occupational therapy, physical therapy, behaviour therapy, a podcast, a magazine and so much more! They have in-person and virtual groups and therapies available.

Did you say podcast?

Yes! The Down syndrome Resource Foundation of our very own British Columbia has a Podcast, 11 seasons deep, covering topics from initial diagnosis to developmental topics to family supports to sexual health and even information about the disability savings plan. They really cover all the topics you can ever think of — complete with lots of interesting guest speakers!

The LowDOWN Podcast

A Basket of Love!

There are a number of organizations and families in North America who provide families with beautiful baskets when they have a baby who happens to have Down syndrome. What a wonderful way to say Congratulations! The baskets vary in contents but here are a couple programs. They all operate on donations, and most just have a simple form families need to fill out to receive the gift. Click on photos to be directed to the website.

There are a number of organizations and families in North America who provide families with beautiful baskets when they have a baby who happens to have Down syndrome. What a wonderful way to say Congratulations! The baskets vary in contents but here are a couple programs. They all operate on donations, and most just have a simple form families need to fill out to receive the gift. Click on photos to be directed to the website.

Image credit: Down syndrome Resource Foundation

Image credit: Jack’s Basket website

Down syndrome – a word or two?

After our class last week, I had the idea of putting a Padlet question out there onto social media. The question was “What are some words that come to mind when you hear “Down syndrome?” I created the word art below with the responses. I think these words definitely highlight some beautiful traits and qualities of people with Down syndrome. My favourites are the hugs and the smiles. Is there a word you would add? Consider leaving a comment with your word or words.

I hope you found some helpful information in all of amazing resources that exist for families. I hope you’ll take some time to learn about some of the them so that when the opportunity arises you’ll be able to engage in some conversations about Down syndrome and point people in the direction of support that these resources provide.

I created this “word cloud” image (without the AI option) on this website: Word Art.

Below is a photo of my little friend Alyssa and I. This was a couple of years ago at a girl guide campout. I’ve known Alyssa since the day she was born. We have had some pretty fun adventures together. Alyssa loves Special Olympics Fit Club, Girl Guide meetings and swimming. To know her is a blessing!

Reflection on technology from this week’s post: I was a little bit surprised at how few responses I received to the Padlet question. I shared it on my personal FB page (over 500 friends), my IG story and on a Mom Chat Facebook group with almost 2,000 members. I suppose this is one of the downfalls of technology. You don’t always get the outcome you are hoping for or entice the amount of people you think you will. I remember the most “viral” post I ever made on Facebook. It was about how the City of Kimberley was poisoning gophers underneath the soccer field in Marysville. My daughter found a suffering gopher one night at soccer practice. She had to take it home and we found a small animal rescue to take over the care. Sadly, it died the next day. When I posted about it, the post was shared a couple hundred times and people were irate about the policies that the City had about poisoning gophers, near an area that had so many dogs and children playing. That’s as “viral” as it gets for my social media adventures!