“I had hunted down this specialist like a crazed groupie and had really badgered his office for just about a year to convince him to come out and consult with Max and consult for us. I thought he was really going to give me that key — that one piece of advice and help that was going to change everything.”
Gayle Trotter: This is Gayle Trotter, and today I’m speaking with Emily Colson, mother of Max, author of Dancing with Max, artist, and daughter of Chuck Colson. Thank you so much for joining me, Emily.
Emily Colson: Thank you, Gayle. I’m thrilled to be here with you.
GT: An autism expert once told you to lock your autistic son, Max, in a closet when he was noncompliant. Was this the worst advice you ever received as the parent of an autistic child?
EC: I think we’ve received a lot of bad advice. I think that came at a time when I was searching so hard for a cure and some hope and something that would turn our situation around. We were in a really bad place back then and the tantrums were just enormous, we couldn’t go out of the house and I had hunted down this specialist like a crazed groupie and had really badgered his office for just about a year to convince him to come out and consult with Max and consult for us. And so we spent about two hours together and I thought he was really going to give me that key — that one piece of advice and help that was going to change everything. And instead what he did was to tell me that when Max was noncompliant and didn’t listen and didn’t follow directions, I should lock him in a closet to teach him a lesson. And more than anything I was devastated that I had wasted a lot of time chasing after this fellow, thinking he had the answers. And he didn’t at all — it was terrible advice.
GT: You’ve had over 20 years of experience in parenting an autistic child. What advice would you give to a mother who has just learned that her child is autistic?
EC: I would give her the same advice that someone gave to me when Max was diagnosed. And that was our dear friend we call Peppermint Patty, and she said to me, “Max is a gift. These children are a gift. God works through these children.” And I didn’t understand that advice in the beginning. I thought that I understood how he was a gift: I was crazy in love with him so how would he not be a gift? And when I explained that to her she said, “Emily, it might take you a little time to know what this truly means.” And she was right: it’s taken me some time because over the years I’ve watched how God truly does work through Max, I’ve watched how Max affects other people — how he changes the rest of us — and how there has been tremendous healing in that process, in the process of God using Max to change the rest of us and help us learn selflessness and compassion and joy of life despite the circumstances. There have been many, many gifts. And I know that a mom who’s just had the diagnosis is pretty devastated, but I promise that there will be beauty to come.
GT: In your book you say that Max is exactly like the rest of us, searching in the wrong places for answers, hoping someone trustworthy will show up and help us through. You mentioned Peppermint Patty was sort of that person for you. Were there other people like that, who were those trustworthy people for you?
EC: I think we’ve had a really interesting journey of some people who come into our lives and stay, and have really been a tremendous help and support, and there are other people who have come into our lives for five minutes, 10 minutes, an hour, and given us such hope and joy in their kindness and some people who have just stepped out of their comfort zones and done something kind for Max, a stranger, has been a really beautiful experience to watch. I’m thankful that we have a wonderful family. My brothers and their wives, and Max has cousins and my parents have all been tremendously supportive. And we’ve had some teachers who have been really great and who have stayed with us in our lives and really been a great support. And ultimately the only one who really can be that constant support is God. And I’m very thankful that even when some of the other things are taken away, he is still there, even though we feel a little bit more desperate when we’re on our own, just us with God. I’m someone that I like a big crowd — I like knowing that I have sort of that Verizon network behind me in the ads where you have hundreds of people. But ultimately it is that God is there for us. That is all that we truly need and require.
GT: In your book you talk about how you had this voice — not a literal voice, but the idea of Jesus telling you to take his hand and walk with him. And your first inclination was to say, “No, I have to get Max first.” Can you explain a little bit more about that?
EC: That was at a very, very broken time. Max was two years old and our lives had just turned completely upside down. My husband had walked out when Max was 18 months old, we were trying to find a new place to live, how were we going to do this financially? I was in the process of trying to understand what was going on with Max and what was this disability, what was this condition that was causing him to have so many developmental delays and his behavior was so different. So it was a really desperate time and I remember throwing myself over the bed in prayer, once again, and having this sort of image in my mind of Jesus saying, “Walk with me,” and yes, my maternal instinct took over and I said, “Yes, but I have to get Max first.” I couldn’t imagine doing anything without Max. And his response, which was so unlike anything I would ever think, was, “I will take him later.” And Jesus was asking me to walk with him, not sit with him — it was a forward motion action required. It was not, “Stay here.” It was actually I need you to go forward and go somewhere with him. And it wasn’t until a few years later when I was truly desperate again that I began to understand that a little differently and that I did need to get up and out of the pit that we were in and take some chances and take some risks, holding onto him — holding onto the Lord — and say, “OK I’m going forward. I don’t know where we’re going, but I’m going with you.” And it made all the difference in our lives.
GT: You mentioned your father is one of those trustworthy people for you. And in your book you say, “God used my dad’s lowest days during Watergate and his seven months in prison to boost him into his purpose. I remember that often when I feel like a bottom-dweller.” Can you describe how having Max and parenting him changed your relationship with your father?
EC: Oh, I think it’s been so beautiful to watch the two of them and how their relationship has impacted our family. When Max was young my dad tried so hard to teach him. And really I think he felt it was his responsibility to impart his great wisdom on Max and we knew there was autism and that Max had an awful lot he needed to learn. But Max was completely uninterested in this approach. He didn’t want anything to do with my dad to teach him so he’d run the other way or cry and it wasn’t until my dad was sick with the flu and he was on the couch for a week. Max and I were down in Florida visiting and he had to watch us. He couldn’t do anything but watch. He couldn’t jump in and interact and at the end of that week he realized — he said to me that he realized what a beautiful boy Max was and how much he could do and what a loving relationship we had and he watched his grandson. He had to be still and observe and that changed everything for my dad. From that point on, I think he realized he had to meet Max where Max was. He couldn’t bring Max into his world, but he had to go and meet his grandson on his grandson’s terms and from that point on my dad would clear his schedule every time we would get together, every time we’d come down to Florida. And we’d do nothing but play mini-golf, go to the park, go to the playground, go swimming, everything that delights Max. And the wonderful thing is, that’s really given all of us a gift. I didn’t have that time with my dad when I was kid because he was in the White House and his life was kind of a whirlwind — it’s always been a whirlwind, but the neat thing is it’s really given us time to just sort of be still and be family together and enjoy each other’s company without running so quickly between one activity and another. And my dad doesn’t take phone calls when we’re down there, he doesn’t do any writing, he rarely does a radio program when we’re there so we just have this wonderful gift of time together and that’s because of Max. Because of his needs, we’ve really had to learn — which is a daily lesson — to learn selflessness. To get out of our own way and be present and available for someone else who has significant needs. That’s a great gift.
GT: That’s something that very much interested me about your book is the conversation between you and your father, because your father writes the beginning and the end of the book. And I knew your father’s story and that he was very driven in his White House years and then the founding of Prison Fellowship, but it’s amazing that God didn’t change that part of his nature after Watergate. He just used that towards the new purpose of Prison Fellowship. Correct me if I’m wrong, but it took Max to change that aspect of him.
EC: I think it took Max to teach my dad something new about selfless love and I think that my dad’s level of drive has been exactly the same, whether he was in the White House or whether he’s been in Prison Fellowship. His drive is the same. His goal is totally different.
GT: Absolutely. Absolutely.
EC: But we’re all continuing to learn new things and God never lets us just sit as we are. He always has new challenges and bumps us out of our comfort zones and I think this was one of those things — Max was one of those things — that has bumped my dad out of his comfort zone. And he couldn’t be the teacher. He had to learn from Max. And Max has had a lot to teach all of us.
GT: You quote your dad in your book as saying, “It’s not what happens to you in life that matters, Emily. It’s how you handle it that determines your character.” What word of hope would you have for parents of autistic children in how to handle the things that life is throwing at them right now?
EC: I will tell you that every day I go through this struggle and there are very few days that are really simple and easy. But I made a decision when Max was nine, so that’s 11 years ago now, that I would wake up every morning and say, and believe, “This is my last day alive.” Now, one of these days I’m going to be right. But I wake up in the morning and say that and it changes my whole perspective because it helps me be a lot braver about what I’m doing in my day. It helps me take some chances that I might not take. There were years when we stayed inside the house, other than a few attempts to get to school which usually failed, and we were really hostages of our circumstances. And I think that there are a lot of families who are right in that spot. This is tough stuff. This is no easy walk, with autism.
GT: That’s right.
EC: But what I’ve seen is that when I take it in small chunks, one day — I don’t want to miss that one day. If I only had one day with my son left, it would completely change the way I looked at things. If it didn’t go well in the morning, I’m going to refuse to let it ruin the rest of my one last day. That’s helped me a great deal. I still do that. It’s still a struggle. This morning was a particularly challenging morning for Max and I could feel my patience running very thin but I’ve got to rework myself and recalibrate and say I can’t let that ruin the rest of my day. I’ve got to work and squirm and sit with my devotional books and pray, get myself back going straight and start again and make sure that I don’t lose any bit of that day because — I’m going to tell you, parents of autistic kids, we love our children desperately — we love them so much, we’re not looking for a trade-in. I think what we need is just an enormous dollop of God’s grace in our lives. And he is present. This is what I know even in our darkest times, I know God has been with us and I know he’s been smiling because he knew the plans he had for us: plans to prosper us and not to harm us, plans to give us a hope and a future. And he is.
GT: Your words are filled with faith and I know from your book that you were not practicing your faith, or maybe had fallen away from the faith or never really embraced the faith before Max was born and you talk in the book about how you’re an artist and how delving into the book of Revelation drew you back into the interest of things of faith. And I found that quite interesting because for a lot of people who are faith-filled, reading Revelation pushes them away from the faith!
EC: [Laughs.] I know! Well, when I first became interested in reading the Bible, and yes it was quite a few years before Max, and I was in my late 20s and I was just curious. My life actually at that point was so perfect and so lovely, that I actually thought: There has to be more to life than this. It’s too easy. Never think that; this is just a little piece of advice from me: Never ever do that. Just soak in those little moments where it feels nice and easy. Those are resting places. But I actually looked at the Bible and thought, Well, I recognize two titles: Genesis and Revelation. And I thought: Well, why don’t I read the end and see how it all turns out. [Laughs.] So God knew. God knew exactly what to do. Because as an artist I began to read it; I didn’t really understand it, but the imagery was so powerful and it was just riveting and I couldn’t believe that I had never opened the book and really looked at this. I thought it was sort of stuffy and that the Christian life might be sort of for boring people. Hold on to your hats.
GT: Or losers, like Ted Turner says, right?
EC: [Laughs.] I just thought those are people that aren’t like me. And once I started to read I was so captivated by the creativity. As an artist, I was hooked. Then I began to read other places — other books in the Bible and realized of course it isn’t all so intensely visual as Revelation. But by that time I was hooked. And it just began to seep in. When I had Max I was a Christian but I really didn’t sort of know what that fully meant. I was on a journey. Without a doubt I was on the path. But it wasn’t until life really completely fell apart that I was so grateful I had that foundation and built from there.
GT: Your dad theorizes that maybe some of us like Max are less affected by the Fall of Man than others. He quotes a theologian as saying, “Autistic kids embody the wisdom of God in ways that interrogate, critique and undermine the status quo.” In your life, how does Max embody the wisdom of God to challenge the status quo?
EC: There is nothing status quo about going through life with Max. Nothing. Nothing ordinary. Everything is turned upside down. Max comes into the room — I used to call him the “spoon in the blender” because everybody turns and looks. Everybody notices and no one remains neutral. Some people try. Some people try to look like they do not notice my son dancing in the middle of the grocery store. [Laughs.] But I really notice them trying to look like they’re not noticing. Because you should notice this! This is very different! But he teases out our true selves. He reveals who we really are. In ways that I think we’re not even aware of. And sometimes people react very badly to Max. But I have a sense that afterwards they’re surprised by their own behavior. And some people respond in extraordinary ways and just do the kindest things. He’s almost a barometer that reads people faster than they can read themselves.
EC: And he can pick people out, too. It’s very interesting. He will read people within just a few seconds on who will respond well and who won’t and he gravitates towards those people that he really knows are going to be OK with him. But he shakes up everything. He shakes up our ideas about life, about what matters, about what’s valuable, about our priorities, about how we see ourselves. You really cannot be full of yourself and be around somebody like Max or you’re going to have a really bad time.
GT: That’s right, that’s right. Well tell me about taking Max to Trader Joe’s because I just love this story.
EC: With the pizzas?
EC: For years we were hidden away at home. We could not go out. So now when Max goes out, after so much effort and so much hard work, he doesn’t miss anything. He just has so much joy. And I took him into a Trader Joe’s and he darted over toward the fruit section of course because he rearranges the fruit because he’s very good at that and then he went to the freezer section — he loves appliances, he loves every appliance, refrigerators, microwaves, vacuum cleaners — so he leapt in front of this open freezer, saw the frozen pizzas inside, grabbed a box, held it up in the air, he was so excited that he started to yell, “Pizza! Get your pizza here!” And there he is, dancing, this 180-pound, 20-year-old man, yelling that he’s selling pizzas. And I’m going to tell you the amazing thing was every single person got caught up in the joy in that little grocery store and every single person took a pizza and within 45 minutes that freezer was empty. It was the most delightful thing. But they really didn’t want the pizza — what they wanted was a part of that kind of joy. And Max has this way of transforming an environment because he isn’t worried for a second about what somebody thinks of him. It’s part of the disability, but I’ll tell you what, it’s also part of the gifts, because he isn’t worried about what someone thinks of him and he isn’t obsessing over what he thinks of somebody else either. He isn’t passing judgment on others.
GT: And that’s a lesson we all need to learn, right?
EC: Oh, and it’s so refreshing. So I think people gravitate towards that. Sometimes they’re afraid of it, but when they gravitate toward it, it is the most freeing, beautiful thing you could see. And that’s what happened in that Trader Joe’s. Max just transformed the place.
GT: Emily, thank you so much for speaking with me. The book that you’ve written, Dancing with Max, is incredible, and I would recommend it to all my listeners.
EC: Thank you. Thank you, Gayle. I appreciate that, and I appreciate your time.