"When One Teaches, Two Learn" ~ Robert Heinlein

My sisters-in-law were recently here for a visit. It was so nice to have them here! The three of us were at lunch and Shan asked if she could ask questions about Evie. We started talking a little about Evie's prognosis regarding speech specifically, but also the possible timelines of generally discussed milestones that a child with Down Syndrome might experience. I shared with them a little table of milestone age ranges for a variety of things from speech to potty training and beyond. I explained that there are so many variables and unknowns and that we've just learned to be flexible, open, and find joy in Evie's timelines.

As we talked about speech specifically, we focused a lot on the expectations that people may have based on experiences and things they learned, in some cases, decades ago. Also how Rob and I look at those things related to Evie. For example, even when Ben was little I knew of people to say that little ones should not learn sign language (ASL or otherwise) because that will not encourage them to use words to communicate. I can definitely see perspective there and I imagine there are many children who benefitted from that approach. I also think there is another end to that spectrum: kids who are not taught sign language or other methods of communication, do not speak/cannot speak can become very frustrated, anxious, depressed, etc. because they have no way or limited ability to communicate their wants, needs, feelings, thoughts, and whatever else.

Since Ben was a baby, I've gone back and forth on those thought processes, and I can understand how each can be beneficial in some ways. Ben had a lot of ear infections as a baby... a lot. Every single month of his life until he had tubes put in at 17 months, he had ear infections. It was awful. I do believe that this affected his speech and hearing early on. His hearing is fine now, and his speech is too. For a while we weren't sure if it would be okay alone or if he needed help.

With Evie, we are even more aware of and open to the "alternative" methods of communication. I say "alternative" but I don't think there is just one clear way to communicate, but there is no denying the cultural expectation of verbal speech. Evie communicates with us pretty well, and most of the time we figure out what she needs fairly quickly. People don't have to spend much time around her to understand her, even though she largely relies on gestures and facial expressions. She does like to use her voice too, just not in words. Well, except "mama" and "dada." She says those and demonstrates an understanding of who mama and dada are. She understands a lot of words and short sentences. If you ask her to bring a book to read a story, if she wants to do that, she will bring you a book to read to her. If you ask her to get her ball, and she wants to, she will get her ball. There are so many words and phrases she understands. I digress.

My conversation with my sisters-in-law took a turn that day that has been on my mind ever since. Shan sort of asked and sort of stated that it isn't my job to educate people. At the time, I readily agreed. In a way, I still do. It is not my responsibility to teach people... at least those who don't want to learn. My memory is a tad foggy on how we got there, but Sandy brought up the show Life Goes On, from way back in our childhoods (late 80s to early 90s). One of the characters was Corky Thatcher, who had DS. I had completely forgotten about that show, but remembered how much I liked it.

Within 24 hours of that conversation, I saw a social media post by the National Down Syndrome Society that on March 7th, 2024 they are "honoring Chris Burke (AKA Corky Thatcher) and 18 other actors who have expanded representation of the Down Syndrome community in film and television." We just talked about this! Call it a coincidence or a God thing, whatever works for you. For me, it was a reminder that I do have a responsibility to teach, to make the world better for our perfect girl. She doesn't need to change. The world needs to change to see people with special needs as just that, people. People who are capable, beautiful, intelligent, talented, and worthy of the best life has to offer. That is my job. Not that I can do it alone, I won't even make a scratch in the clear coat of the paint job. But there are things I can do.

When Evie was born, I didn't offer much information on social media or to people who weren't close to me. I don't recall feeling ashamed or anything like that. I was terrified of something I didn't yet understand and thought I was going to lose my girl. I know I've said it before, but it bears repeating, the day she was born was one of the happiest and most traumatizing days of my life. It took me a while to get to a place where I was ready to answer questions. Where I was ready to talk about what DS is and what it isn't. I know there is so much that I don't know and I can only speak from what I've learned about Evie over the last 22 months. It feels really good to know that I'm at a place where I am not only open to questions, but I encourage them! I want people to ask questions so I can share with them the truths I've learned about DS and the beautiful little girl we are so grateful to love.

If I... no, if we leave the education about DS to internet searches, well... I don't know how we'll change the public's perception of what DS is and about people with DS. What you find, unless you really know where to look, is pretty damn terrifying and hopeless. If you're lucky enough to stumble upon a site dedicated to talking about both the realities of DS and the wonders and joys of it, then you can probably get a better picture. That's not what tends to come up if you just search it though. That's what we see. That's what we learn. So maybe, in sharing our story, Evie's story, and being open to questions and conversations... maybe I can do my part to make this world better for my little ball of Evie sunshine.

My two favorite kids in the ocean with the setting sun. 1-24-24.