(Child pictured is not Cade Lyons.)
“Stay curious. Think well. Advance good.” This is the motto behind Q, a nonprofit dedicated to redeeming culture through conversations. I had the privilege of getting to know Gabe and Rebekah Lyons, the founders of Q, and their three children, while I was in New York for college. Their oldest son, Cade, has Down syndrome. Anyone who’s ever met Cade knows he’s a charmer — he has the most original dance moves I’ve ever seen and a smile that could light up all of Manhattan. He also has an unflagging capacity for kindness — he never turns down an opportunity to say hello to someone and seems to have an inner compass telling him who in the room needs a hug at all times. Cade’s never met a stranger. And the truth is, I could afford to be more like him.
Gabe and Rebekah were part of a team that put together the booklet, “Understanding a Down Syndrome Diagnosis,” and have continued to openly speak out in defense of the lives of Down syndrome children. In honor of Down Syndrome Awareness Month, and in honor of Cade, I had a chat with Gabe about what he’s learned raising a child with Down syndrome and how we the church can think well about, and advance the good for, individuals with Down syndrome.
Tell us about Cade. How has raising a child with Down syndrome changed you and your family? What has surprised you?
It has been a joy raising Cade, that comes with different challenges that many parents may not experience. For us it’s been what we’ve considered a grace that God’s given us, because Cade has taught us so much. He taught us that love isn’t something you bestow on somebody based on their performance, or their ability to achieve, or even their ability to say back to you that they love you. Love is something you unconditionally give. Because the act of giving love in and of itself brings joy to your heart. And it teaches us how God sees us as well.
Cade has been a great barometer in our family of when things are going relationally well. We can tell, because he’s thrilled and happy and joyous. When things aren’t going relationally well in our family, he signals us that there’s a problem. And that has been a gift to our family. Cade acts as our conscience in some ways, he helps us to straighten things out — to find a way to make a relationship better, to apologize, ask for forgiveness, when we’ve treated one another poorly. He has such a sweet tender spirit, and he just picks up on these relational things. While his speech is not advanced enough to share with us all the things he experiences or his feelings, his actions, his motions, his ways of engaging with us easily communicate that he’s very in tune with what’s happening relationally.
Why do you think the vast majority of parents choose to abort after a prenatal diagnosis for Down syndrome?
From our anecdotal discussions with parents, there are two main reasons.
One, the pressure from the doctor, as well as the delivery of the news from the doctor to the parent. That typically is done in a very negative way that makes the parent question whether it would even be wise to keep this child. There’s a lot of fear that starts to well up in them related to whether this is really good for their siblings, whether this will be good for their family, whether they will have to quit their job to be a full time parent for this child. So there’s a lot of fear of the unknown for a new parent when they’re trying to make this decision. And doctors and insurance companies are less interested in going forward with it — doctors, because of their own fears of being sued later, and insurance companies because they don’t want to pay what it may cost over the years for a child with Down syndrome. They feel the pressure.
Number two, parents are not hearing the positive stories about life with children with Down syndrome. And everywhere I go I meet so many people who know an individual with Down syndrome who has brought incredible joy to their life, to their relationships, and to the community. The only stories that tend to be told are the negative ones. There’s a lot of misinformation. We just have to do a better job telling the story of the enriched lives of these individuals, and what a joy they are in our lives and in our community.
A lot of people just aren’t familiar with how much these children actually can do – they can do just about every single thing any of us can do, and live far into adulthood. Sometimes it just takes them longer to figure out how to do it or they have a hard time communicating in speech or emotionally what they’re feeling. So if you look at them as an individual that’s still developing, even though they might be in a bigger body, still learning, still growing – then in some ways that gives you more patience and even more incentive and motivation to help them along and help them grow as individuals to become independent in their own lives.
If you had the chance to sit down with parents who’ve just received a prenatal diagnosis of DS in their baby, what would you want to say to them?
I would want to acknowledge how scary those words sound to a new parent. I would want to empathize with the feelings I had – that my expectations for what this child would be like were now going to be changed and different. But I would not want that fear to keep them from stepping forward into what could be one of the greatest contributions to their whole life. Having this experience, this gift – this child is going to teach them much more than they could ever teach a child about the meaning of life.
How can we change the cultural perception of Down syndrome and how can the church encourage parents to embrace the challenges and rewards of raising a child with DS?
Well the perceptions are changing, very positively. Groups like Best Buddies have done an incredible job. You know, there’s a waiting list many times for typical kids to get to partner with a child with Down syndrome or special needs to be their buddy – to be their person that really looks out for them. I’m thrilled about so much of that progress. And in our school systems – so many of our schools are doing a great job of caring for our children. So I think the biggest way to improve is continued exposure, so that children with Down syndrome are interacting with other people in their communities and aren’t isolated to only be with people who have special needs. So inclusion throughout the community is a big step.
There’s a great opportunity for churches to really provide support for parents. This is one of the most lonely and isolating situations that parents can go through. They don’t know that anybody else can relate to any special need that their child might have. So when churches come along and provide opportunities like Friday night respite evenings where parents can go out and have a date because they’ve got a qualified group of people there to spend time for a few hours with their children, those are gifts to parents. It’s hard to put into words how much it means to a parent to be able to have that opportunity to look forward to of other people caring for their child, loving on them, and their child enjoying being there. I know of other churches that have actually created entire special needs wings for children that include state of the art rooms and training for the teachers, so that in their community they can be known for loving these children and loving these families really really well. That in and of itself would be quite an innovation – if the church is able to lead by providing some of the best care centers as more and more parents find themselves in a situation where their child would have special needs.
Thank you Gabe! For more information about Understanding a Down Syndrome Diagnosis, visit lettercase.org.