“God said, ‘Shannon, I hung naked on a cross for you. Look at your son.’ What does it matter what these people around me think of me or my mothering or what’s happening in this moment?”
Gayle spoke with Shannon Royce, President & C.E.O. of ChosenFamilies.org. Prior to founding the organization, Shannon served in various pro-family organizations as a public policy advocate. She served as the Director of Public Policy and Legislative Counsel for the Southern Baptist Ethics & Religious Liberty Commission. Prior to her work with the Southern Baptist Convention, she served two Senators as a policy advisor. She earned her Juris Doctorate from the George Washington University School of Law and is licensed to practice (currently Associate status) in the Commonwealth of Virginia.
Shannon and her husband Bill have two boys and live in Falls Church, Virginia. She has been actively involved in Falls Church as an advocate for children with special needs and serves as the Chairman of her local Special Education Advisory Committee.
Click here to listen to our twenty-five minute discussion or read the transcript below.
Gayle Trotter: This is Gayle Trotter, and today I’m speaking with Shannon Royce, president and CEO of ChosenFamilies.org. Thank you for talking with me today, Shannon.
Shannon Royce: My pleasure. Thank you, Gayle.
GT: Shannon, you started this organization to help families with children that have hidden disabilities. If the disabilities are hidden, why do these families need help?
SR: I think the reality is families living with a variety of disabilities have unique needs. Families living with disabilities have all the same challenges that you have, Gayle. You’re a wife and mom and you have all the regular stuff of life. You have a mortgage to pay, you have activities to attend, you have clothes to wash, fold, dry, put away. You have meals to cook. You have all of these things that are just a regular part of life. Families living with disabilities have all of those things, but they also have another whole layer of things on top of all the regular stuff that frankly most people are not even aware of. They have special doctor appointments. They may have counseling appointments. They may have meds they have to monitor and stay on top of and pick up, and they may have OT and they may have speech and language. There’s just a whole extra layer of complexity for families living with disability. And so they are families, by definition, that are in need.
GT: What motivated you to start Chosen Families?
SR: We have a son with a hidden disability. And when I speak of hidden disabilities, Gayle, I’m talking about the whole spectrum of brain disorders that don’t show on the outside. If someone’s in a wheelchair or if someone has an assistance dog, it is obvious to the world that those are people who need accommodation and have a disability and may need some assistance of some kind. Families living with hidden disability — things like the autism spectrum, Asperger, bipolar, Tourettes, OCD, depression, the spectrum of brain disorders that affect these people’s lives — it affects everything about their life, but it doesn’t necessarily show on the outside. And sometimes those families can get a little bit lost because we just don’t realize that they’re families in need. Our son was diagnosed eight years ago with a hidden disability and in trying to just raise him according to Biblical principles, one of the struggles we have is that we went looking for materials from a Christian worldview to address the questions we had and the struggles we were facing, and we couldn’t find anything. There was just such a dearth of information, and we were struggling and trying to walk out our faith in raising this special child the Lord had given us, but we couldn’t find anything. So the ministry really is born out of the heart of a mom who is walking this struggle still. It is a joyful challenge; it’s not all negative and challenging and dark, but there are some parts of this that are very difficult and having resources from a Biblical worldview is really the heart driver behind Chosen Families.
GT: Shannon, how would you say that a family with a hidden disability is treated differently than a family that is facing, for example, cancer?
SR: I have lived with both, as you know, Gayle. And so this is really an interesting question. I think many of the disabilities we’re talking about at Chosen Families — because they’re neurological disorders — they tend to play out through behavior. And so you might have a child with extreme attention deficit issues, can’t sit still in church, really struggles, just a wiggle worm. We’ve all seen them, you may have some yourself, in your family with your kids. But these kinds of issues from the outside looking in, they’re often read as just bad parenting: “You just need to discipline that child better. I’ve got a book you ought to read because it’ll really help you know how to get your child to act the way they’re supposed to act.” And that is so different than an issue like cancer. When I went through cancer treatment five years ago, our Sunday School class brought meals every time I went through a chemo every three weeks. There were meals brought to our home, and we were so grateful and it met such a huge need. But families living with hidden disability, that just never happens. You might really be going through a crisis with one of your children that doesn’t necessarily show on the outside. It may be an internal kind of thing where they’re really laboring or struggling and yet no one seems to notice that unless you just try to talk about it and even then a lot times people don’t even understand. They’re difficult issues to understand.
GT: And you have the experience with both and would you say that they’re similarly difficult or maybe of the same magnitude in certain circumstances?
SR: Here’s the interesting thing. In dealing, for instance, with cancer, I went through treatment. I knew that it was, while a lifelong journey, it was sort of a short-term crisis. I had five months of chemo I needed to endure. It really was an endurance kind of season. I would deal with the struggles of each day but I always had my eye on the end of June. I knew that the end of this challenge was coming.
GT: Yes.
SR: For those living with disability, with illness, you don’t ever see the end. It is just a part of your life, so that makes the challenge really different to process. It makes it different on a daily basis. The balancing act of managing life takes on a whole new light. You mention listening to the Janet Parshall program from last week and on that program Janet played voices of moms of children living with autism. And those voices, boy they just rang of the exhaustion and the weariness and the challenge and the grief and the loss of normalcy and the loss of dream, and it just goes on and on and on and on. And the services that are available for children, for instance, with autism — this is Autism Awareness Month — we’ve got services available for children with autism, but what about that whole generation of children who are now turning 20 and 21 and 22. Where do they go?
GT: I spoke with John Donvan earlier on my website. He had an article in The Atlantic Monthly about finding the first person ever diagnosed with autism. He details in the article, and we spoke about it in our interview, that question of hope for the parents because they know that this is a lifelong condition.
SR: They’re confronted also, Gayle, with — when I spoke about the sort of extra issues that they have to think about — they have to think about legal questions that most families never have to think about. Your kids grow up; they go to college or they find a trade; they go on with their lives; you go on with your life. They’re still your children, you’re still their parent. You’re engaged. When you’re raising a child with a significant disability, you have to look at who’s going to care for this child when we’re gone. You may need a special needs trust to be set up so that brings in a whole layer of legal issues that most families just never have to think about.
GT: And you have a legal background, too, to understand that a little better and most people don’t.
SR: No. Even having my legal background, when you’re dealing with these issues, it’s such a specialized area, you may not have the expertise in that particular area of the law. So it just raises a whole layer of extra issues that are very stressful for families to process and think through and to find answers for because clearly these are people who God loves deeply and dearly. He created them with a purpose just as he created you and me with a purpose. And yet walking with them through their lives can be challenging.
GT: And speaking of that, I have a friend whose child has OCD and anxiety disorder and on your website, you mention that a lot of these conditions go together — you don’t just have one, you have two or multiple. This child has missed several months of school. What suggestions would you give this family to engage their church on behalf of the son and the whole family?
SR: I think that is a really, really difficult kind of challenge. Again, another whole layer — the school layer — of the challenges that take place for a child with special needs in the school system, I think in those kinds of circumstances, the first step that I would take would be to have a really transparent conversation with your pastor or your youth minister or your family leader: whoever the appropriate initial contact at your particular church would be. To just sit down and let them know what’s going on. They may not know. It really may be a case where they just don’t know the challenges your family is facing and I think having that kind of really transparent conversation and just saying, “Boy, we really need your help and support. Can we think about ways that you could maybe help our family?” I just think that is a critical part of this journey.
GT: It’s helpful to hear from other people who are in this same situation. Can you tell us about the different voices on the blogs on your website?
SR: One of the goals of Chosen Families is to help speak to the feeling of isolation that so many families have when they’re living with significant disability. So we have bloggers. At this point we have ten bloggers from various voices and by that what I mean is, we have two moms raising children with autism. One of them is a teenager so she’s looking at those transition issues and questions. The other has with a six-year-old so she’s still early in that journey, in that process. We have a mom of a teenager with Asperger, a mom of a teenager with bipolar. We have a mom of a young child with sensory processing disorders and learning disabilities and another mom of a child with Tourettes Syndrome and OCD. And so we also have a wife of a man with bipolar and a woman who writes about her own struggle with depression. So we’re just growing out the various voices from our bloggers so that they can share their journey, the struggles as well as the joys. You know there really are some fun parts of having a child whose brain is wired differently. They just see the world differently; it makes it interesting and fun in some ways. But they also talk about the struggles. This morning, Gayle, the mom of our teenager with autism commented on one of the blogs, and she commented how what a struggle she’s having just this morning because she labors to try to have her son connect socially. They had a party at their house yesterday (a game party where they were serving pizza and they had prizes for the winners), and she was excited and really trying to help make some connections, and no one came.
GT: Heart-breaking.
SR: Absolutely heart-wrenching. Absolutely heart-wrenching.
GT: Were these people from church?
SR: I think some were from church, and some were from school. But here’s the deal, Gayle, the reality is I’m sure every single individual teenager who didn’t show up probably had a reason they didn’t show up. But what we have to look at is: What extra measure are we willing to take to try to reach out to the family in need? And this is clearly a young man in need. People know him. They know that he has autism and so social interactions are a struggle for him, and sometimes you have to set aside the three things on your plate today in order to look at someone in need and recognize: You know what? It’s really important that I go do this. Because he doesn’t have any friends and I need to do this. And if we don’t talk about these things and provoke this kind of look-at-the-other-person view, we’ll never make progress. So that’s part of what our goal is, is to make people aware, to open your eyes and look.
GT: Those concrete steps you can take, you just mentioned one: If one of these families invites your child to participate in some kind of activity, it would be going the extra mile —
SR: Absolutely.
GT: Are there other steps you can recommend to families not going through these types of hidden disabilities to embrace families that are living with this?
SR: I think when you don’t know what to say, so often what happens is people just don’t know what to say so they simply don’t say anything. And what I would say — a very concrete thing — if there is someone in your church family who is raising a child who just is different — you may not know what it is, but you know there’s something different — just approach them at church and talk to them and give them a hug and ask how you can pray for them. Just don’t walk away. It’s so simple, but it’s so concrete and easy to do — just pause from your busyness and look at that person.
GT: When I spoke with John Donvan, he had a great comment that we all have our own struggles, even those of us without hidden disabilities. He said that he’d been fortunate to have people help him along the way. And I thought that was such a good point: that we all need to be helping each other along the way.
SR: Yes. Absolutely. And you know the Biblical story that comes to my mind when I look and ponder this is the story of the Good Samaritan and the two church figures that are spoken of in that story. It says the man is on the side of the road; he’s been badly beaten; he’s left to die. And two church leaders come along and it doesn’t say that they went over and hit him; it doesn’t say they threw a rock at him; it doesn’t say that they cursed him; it doesn’t say anything like that that they did negatively overtly. All it says is they crossed to the other side and walked by. And that’s what I would call people to be sensitive to and to pray about and to think about. What can I do to just look at the need, acknowledge it, touch the family? What can I do that’s concrete? And I am just utterly convinced that if we have that kind of heart about us and that kind of awareness, God will show us things to do. Things like, this young man with this party yesterday. I’ve got a busy schedule today; I’ve got a test tomorrow; I have a project due on Thursday. I’d really rather go out to Starbucks with Sally, my friend, but you know what, I really— I can take an hour. And it’s just a deliberate act of kindness, extending ourselves to those who are different. And it does take deliberateness because we’re all busy, Gayle. Our lives are crazy busy, ridiculously so at times. And so we really are consciously checking ourselves and being aware that Christ would want us to just extend ourselves in kindness. That’s really what I encourage people to think about.
GT: Shannon, how has what you’ve experienced with the hidden disabilities shaped who you are today?
SR: Wow. You know, one of the main things that I have seen God do in my heart, Gayle — and this isn’t something that we have visited about but just a spontaneous answer — one of the main things that I’ve seen the Lord do in my heart is a really deep work just accepting His acceptance of me and not worrying about what other people think. And that is a gift, to be able to just walk with the Lord and come to the place where if something happens and other people stare because they don’t understand what has just happened — and as the mom of a child with a hidden disability, I know exactly what’s happening here — but I’m not going to stop and explain to the people around me, and I don’t need to. And that is a real place of peace that I have come to. That if I am a good mom in the eyes of the Lord it doesn’t matter if anybody else thinks that I’m a good mom.
GT: That’s right. And it sounds like you’ve learned to focus on the “audience of one” which is what Os Guinness called God. That we should focus on the audience of one.
SR: Yes, absolutely. And the other audience of one to focus on. Just a very brief story that’ll give you a picture of this. I was at a store with my boys one day, and you’re a mom so you know how this can happen: you have the meltdown at the store. Every mom has seen it; it happens. You know, typically though, it happens with your kids when they’re five or under. And you train them and you get them to the place that they understand: Here’s the appropriate way that we behave when we’re in a store with mom. And you get to that place where you can go to the store without having the meltdown. Well, many of the disabilities in that hidden disability spectrum, you will still see some acting-out behavior even when they’re older. It still happens. And I’ll never forget being in the store with my children one day when my older one was about eight, my younger about five, and a meltdown began. Now I began to step in, to intervene, to try to keep that meltdown from going full-blown. I did all the things I knew to do. It was hopeless; it went absolutely full-blown. My son is screaming at the top of his lungs. People are turning and staring. I am mortified. And I breathed this prayer to the Lord, in just an instant: “Oh God, I am so embarrassed.” And I expected His comfort and encouragement, you know that’s what I sort of thought He would say to me. And here’s what he said in my heart, Gayle. He said, “Shannon, I hung naked on a cross for you. Look at your son.” And it was this utterly convicting moment of, What does it matter what these people around me think of me or my mothering or what’s happening in this moment? They don’t know what’s happening in this moment. I need to focus on my son who was in a moment of a crisis. And I will never forget that moment, Gayle. It was a life turn for me that has stuck with me all these years. Because in that moment, the audience of one, vertically, was God. Pleasing the Lord was the only thing that mattered in that moment. And horizontally, the audience of one was my son, who was having a moment of crisis.
GT: That is so powerful.
SR: It was life-changing. It still is life-changing to ponder that. Because those living — well frankly any of us raising children, this is true of us — we all have moments like this with our children. They’re just a little more extreme at times with children with a disability. But you know the reality is, if we are pleasing the Lord in our parenting and we are focused on raising this child unto Him, so vertically we’re focused on the Lord, horizontally we’re focused on that child, that pleases God. And that’s all that should matter.
GT: Absolutely. What word of hope can you offer families struggling with hidden disabilities?
SR: Oh, I tell you. The Lord is near. That is just the daily remembrance; that God is walking with us every day; that His mercies are new every morning. He knows what is in front of us today, and He is walking it out with us. I think that’s what we have to remember: that He is not surprised by the challenges in front of your family. This mom who shared that no one showed up at her son’s party yesterday — she’s grieved today —that grieves her heart. And the good news is the Lord is near to minister to her in that grieving. I was able to say to her, “I am so sorry, that is just heart-wrenching.” And she knew I understood. And I think that’s what we have to cling to every day. That as we are walking out the journey that God has given us, that He is present with us, extending grace for that moment of need.
GT: And Shannon, I have a sense that you’ve reminded us that the Lord is walking with us but you’ve also, through this website, assured that more people will be walking along with families with hidden disabilities.
SR: Absolutely. And that really is the goal, to encourage families living these journeys that they are not alone. That there are other families who understand and are living that same journey with them. But also to encourage the church to just be aware, to open your eyes, to extend grace, to extend kindness to ask what you can do to help. All of those things. The church is called to be the Body of Christ. What would Christ do in this moment, because physically, he’s not here. We are. So would he walk away from this person or would He go over and give him a hug? Would he walk away from this person or would He speak a word of encouragement? We are his body; what would he call us to do in response to the families who are part of our church ministry?
GT: Thank you, Shannon, for speaking with me about this very important topic.
SR: My pleasure. And I hope that folks will go to our website at www.chosenfamilies.org to learn more about our ministry.
GT: This is Gayle Trotter, and you’ve been listening to my interview with the inspiring Shannon Royce, CEO of chosenfamilies.org.
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