Down Syndrome Awareness Month - Inclusion

What’s the point of Down Syndrome Awareness Month? According to a quick search, it’s about showcasing the abilities and accomplishments of people with Down syndrome. It’s about spreading a message of advocacy and inclusion. It’s about celebrating people who have Down syndrome. Not everyone is ready to “celebrate Down syndrome” or get involved in raising awareness. In truth, my family has never participated in a Buddy Walk. We’ve never attended any local Down syndrome events or joined any clubs. Initially it was because I was very much in the “not ready to celebrate” camp. As time progressed, it was because Down syndrome is such a minor part of our life.

Ok, to say that it plays a minor role in our life is not entirely true. At times our life seems to be all about Down syndrome. It impacts us in nearly every area of life. Early in our journey I felt a lot of resentment and sadness about Down syndrome. It’s hard to put into words exactly how I felt. Now though, I no longer feel resentment about Down syndrome, but more about other people and their reactions.

To this day there are people connected to us who STILL use the R-word. No one that I’m close to, but really, once you’ve been made aware I would hope for a little more sensitivity. Another issue that many find offensive is the lack of people-first language. Lily is not a “Down syndrome child” or a “Downs kid” or worse, “a Downs” – she is “a child with Down syndrome.” It’s a subtle distinction, and I don’t think I’ve ever corrected anyone, though I’ve heard it more times than I can count. And yes, inwardly I cringe a little every time. So let me take a moment to say, I don’t hold it against you if you’ve used these terms and I probably won’t ever confront you, but please know that Lily is my daughter, not a disability. I know that most of the hurtful comments are made unintentionally. I try to give people grace and the benefit of the doubt. I know that sometimes it can be difficult to find the right words. I have put my foot in my mouth more times than I care to remember. It doesn’t taste very good 😉 So, unless a comment is blatantly rude I usually let it go.

Beyond hurtful words, lately I’m most frustrated with the lack of inclusion. As Lily is getting older, this is becoming more apparent. For example, church is a a sensitive area for many. Search for “church and special needs” and you will see that, sadly, church is a burden for many special needs families. I’ve read that 80-90% of special needs families don’t attend church. Let that sink in for a minute. The very place that should be at the forefront of inclusion is the place many families find the least welcoming.

Below are a few articles on the subject:

If you spend any time reading the articles above, you will see this is a huge issue faced by many, but there are ways to step up and meet the need. No matter how large or small the church, this should be a priority for all. Even small churches with limited resources can find a way to meet these needs. Not every church will be able to provide (or even need) a fully featured special needs program. It can be as simple as an adult or high school volunteer to stay with the toddler or preschool child to help guide them and keep them safe. Or, for older kids, maybe a buddy system would make the most sense. Inclusion is good for all kids, and adults need to set the example.

Church is just one example where inclusion is important, yet lacking. For example, if I want to enroll my daughter in preschool or in a ballet class, I have to ask around to find places that are special-needs friendly. There are schools and other places that won’t even consider accepting a child with special needs.

A friend recently asked a Ds group for advice. After a disappointing IEP meeting with the public school, she realized she’d need to go with her backup option, which was a Christian preschool her older child had attended. Without even having met her little guy, the school called to tell her they couldn’t accept him. Apparently when they found out about him having Down syndrome they didn’t feel their preschool would be a good fit. After she explained that they were discriminating against her son based on fear and prejudice they grudgingly agreed to take him. She was asking for advice on how to proceed. The advice ranged from “lead the way for future parents” to “don’t take him where he’s not wanted,” with most of us moms falling into the latter category.

We all agreed that advocacy is important and a part of our daily life, but our kids deserve to be welcomed and included. For something like Sunday school or preschool, they deserve to be with nurturing adults who will treat them with love and kindness and not like a burden or a problem to solve. Around this same time someone else shared a story about a mom who was told that her little girl wasn’t welcome in their ballet class simply because she had Down syndrome. I understand there can be logistical challenges with inclusion. On the other hand, don’t all children deserve complete inclusion? Shouldn’t we as fellow humans (and especially Christians!) be doing everything in our power to accommodate and include all children?

The tone of this post may seem pretty negative and critical, so let me leave you with some positive notes. While I do think we need to raise awareness of the prejudice and lack of inclusive attitudes and practices, there are also many wonderful individuals with open arms who seek to welcome and include all children, regardless of ability. The mom in the story above decided not to send her son to that preschool, and instead found a preschool that not only welcomed him with open arms, but made her feel like his having Down syndrome was no big deal. They saw him as a child, not a disability.

Upon the recommendation of a friend, we too found a lovely Christian preschool for Lily. It’s a typical preschool, but they have a scholarship fund set up to hire an aide for kids with special needs. They would have taken her without an aide, but Lily tends to wander (technical term is elope) so I wouldn’t have felt comfortable sending her. There was one day last week that her aide was absent, and to be honest I was a bit terrified to leave her, but the teachers assured me they (and Lily) would be just fine. And she was. I wasn’t sure how Lily would do in preschool, but so far she is thriving! Her teachers give me glowing reports of what a delight she is, how well she is doing, that she is doing just as well as her peers, following directions, staying in line, participating, answering questions, playing with and interacting with the other kids, and having a great time. Just a little brag…today one of her teachers whispered to me that Lily is the most polite preschooler she has ever met. Beam! That’s me beaming with pride, by the way 😉

As you can see in the photo below, she’s just as proud as can be about what a big girl she is with her backpack on, going to school 🙂

**Due to recent experience with stolen images, I have removed personal photos and videos.**