People who know me, know that although we have a little one with pretty almond eyes, I don’t talk a whole lot about Down Syndrome. We have never attended DS seminars or conferences. We aren’t part of any organizations or DS support groups and Indy doesn’t gather for play dates with other little ones like her. Not that there is anything wrong with those things. They just haven’t been for us.
Joey and I did go to one meeting at a Down Syndrome clinic at a big hospital in Nashville one time right after Indy was born and were so disappointed, we never went back. It had taken us six months to get the appointment and Joey had a hundred questions about what the best choices for Indiana’s diet were, did they recommend any essential oils or supplements, will Indy be able to read or drive a car, etc… but when we got there, they pretty much told us nothing. They seemed to be very busy and overwhelmed and didn’t have any answers to Joey’s questions. To the best of my memory, this is what we learned… kids with Down Syndrome are prone to love sugar and salt, that they are going to probably be overweight and have a lot of limitations, and that most of the time, will not live as long as other people.
I’m sure they meant well, but for us it wasn’t helpful. It was the opposite of helpful. And the few parents we met who had kids with Down syndrome, weren’t very helpful either. Their children didn’t seem to have any boundaries. No diet restrictions. And very low expectations.
So Joey pretty much stopped asking other people for answers to the questions she had and decided she would take it into her own hands to choose what’s best for Indiana. A few of those choices were… no sugar, dairy, or gluten for the first five years. She eats everything on her plate, always. No means no. And the belief she is capable of being or doing anything she sets her mind to. In essence, we were going to have the exact same expectations we have for any other children.
And so, it turns out, our child doesn’t have Down syndrome after all.
At least at nine years old, she doesn’t know she does. And we pretty much forgot that she does not long after she was born. It just stopped being a thing for us. And so, my experience with raising a little one with DS, is that I don’t really have any experience with it.
We have a joke that we say at our house, that we think is funny, but I’m sure there are others out there who might not appreciate it. Because Indiana looks so much like her big sister Heidi, when Heidi was young, we say “she looks like Heidi, before Heidi grew out of her Down syndrome.”
Now I don’t want to offend anyone. But to us that’s funny. Mostly because for us, Indy having Down syndrome isn’t a precious thing. We don’t get bent out of shape if someone doesn’t say it, or spell it properly. We’re not embarrassed by it and we don’t let it be an excuse for Indy to have bad or unruly behavior. We have always treated Indiana like a regular, typical little girl, and honestly, that is 100%, exactly what she is. A very sweet little nine-year-old girl.
For us, DS is like me having blondish-red hair and Joey having brown. Hopie being tall and Heidi being not so tall. God made us all a little different. And having Down syndrome is part of Indy’s differences. Her eyes are almond-shaped and mine aren’t. She reads fast and some kids don’t. Indiana doesn’t see herself as any different than any other kid she’s ever met, so why in the world should we?
Now there may come a day when she does see things differently. When she looks in the mirror or sadly comes home from school hurt because someone said she was different. And if, and when, that happens, I’ll just remind her that God made us all different. It’s just that some differences are harder for some people to understand.
All that to say…
This weekend we’re hosting a Down Syndrome conference here in Homestead Hall at our farm. All day Friday and Saturday there will be different speakers talking on a variety of subjects having to do with down Syndrome. Sharing information and insight that hopefully will be helpful for the parents and people who will be traveling here from all over to attend.
Since it’s here in our barn, I’m going to try to come and meet some folks and listen to some of the panels. Although I’ve never been to one before, I’m excited to be part of it and will be speaking at some point. Probably mostly sharing my experience of raising a child with Down Syndrome who doesn’t actually have it. And what that’s been like so far. And I’ll share some of what I’ve learned and think and will be looking forward to hearing what some of the other folks have to share.
I am most excited that it’s happening here at our farm in the concert hall. I so want our place to be for much more than just concerts and homesteading events. I want it to be a place where lots of ‘outside the box’ conversations are going on. From medicine, to food, to education... you-name-it.
I mentioned earlier that Joey didn’t look outside for much of the information… but one of the few people that Joey looked to for answers early on was Andi Durkin. Andi had a blog called dstoday.com and in it, she shared some of her insights for raising their son Jett, who was four or so when Indy was born. Although Joey and Andi never met or talked, the insight Andi shared was really helpful for Joey. And for Indy too of course.
Through Andi’s blog, Joey found out about Linda Kane, who is a Neuro-Developmentalist that we’ve become friends with through the years. The input and info she’s shared with us has been invaluable. She helped us to see that Indiana is capable of pretty much anything.
And so a few years ago, I reached out to Andi online and introduced myself and thanked her for her help (although I’m not sure she even knew she was helping us). And we’ve kept in touch the last year or two and that became a conversation about possibly holding a Down Syndrome conference here at our farm. And though it’s taken a while to come together, it’s this coming weekend, Feb 24th and 25th.
Honestly, I have no idea what to expect. I’m just thankful we get to host something like this here, and I am gonna get to be a small part of it. Andi has lots of experience putting together conferences like this and knows lots of outside-the-box clinicians, thinkers, and parents who are going to come share this weekend.
If you, or someone you know, would like to attend the event or watch the live-stream version, just go to www.downsyndromeoptions.org.
- rory
PS - Rachel from ‘Signing Time’ (she is who Indy learned sign language from) is also going to be part of the event this weekend, so Indy is going to be so excited to see her. You can see my blog post about Indy learning signs from her HERE.
