The Gift of Max
About the Guest
Life can change in a moment. Emily Colson, joined by her father Chuck Colson, talks about the birth of her beautiful son, Max. Reeling from a difficult divorce and fearing what might underlie Max's difficulties, Emily persevered in seeking help for her son, who was eventually diagnosed with autism.
Life can change in a moment.
The Gift of Max
Emily: People had told me, ”This will be the hardest job you’ve ever done, being a mother,” and so I just assumed that the no sleep, the digestive battles -- I thought that that’s what other parents were doing. It wasn’t until I was sitting in a play group with some other moms and I asked the question, “How do all of you do this on two hours of sleep a night?”
Finally, someone said, “Emily, my child sleeps all night.” And the other one said, “My child doesn’t have those digestive battles.” I felt so alone, sitting in that room, looking at all these mothers who were staring at me and my beautiful child. I began to realize, “I have a different journey.”
Bob: This is FamilyLife Today for Tuesday, November 30th. Our host is the President of FamilyLife, Dennis Rainey, and I’m Bob Lepine. Today Emily Colson and her father, Chuck, share with us a little of the journey that God has had her on for the last almost two decades now.
And welcome to FamilyLife Today. Thanks for joining us on the Tuesday edition. Before we dive back into the story that we’re spending time talking about this week, there’s another story we’re sharing with listeners this week, Dennis, a story of some generosity of some friends of ours.
Dennis: No doubt about it. In fact, some friends have stepped forward – the number is now approaching fifty of them – who said “We want to help FamilyLife and FamilyLife Today stand strong in 2011. They have helped establish the largest matching grant we’ve ever had for the month of December in the history of our ministry. It’s a little over $2 million. So we’re coming to our listeners here at the beginning of the broadcast. Basically, I’m just sharing with you as a listener: “I need your help.”
Bob: The way it works is, when you make a donation of any amount, we can go and claim that same amount out of the matching gift fund. So, you send in a check for $100 or call 1-800-FLTODAY and made a $25 donation, and we can go and recover those funds from the matching gift fund. As you said, to get to a little over $2 million is going to be a stretch for us.
Dennis: You can see how we’re doing by going online to FamilyLifeToday.com. There will be a thermometer on there that you can track all month. We just need you to pick up the phone or go online or write a check and drop it in the mail and say, “I want to stand with you guys. You’ve helped my marriage and family here through FamilyLife Today.”
I want to tell you something. I want you to stay tuned, not only for today’s broadcast, but I also want you to stay tuned in the future, because we have got some electrifying things coming your way that I believe have the potential to strengthen literally hundreds of thousands and millions of marriages here in America and around the world.
Bob: You can make a year-end donation by going to FamilyLifeToday.com and donating online, or you can call 1-800-FLTODAY, 1-800-358-6329 and make a donation by phone. We want to say thanks in advance for your generous support here at year end. We really do appreciate it.
Now, in thinking about the story we’re going to hear today, Dennis, the story of Emily Colson giving birth to a son and the distress around the birth of that baby, I had to think back to your experience and the experience of your daughter and son-in-law when your grandbaby was born. Everyone knew there was something wrong right away.
Dennis: Well, the birth of a baby represents so much hope and so much expectation and there are so many dreams and things you want to see this young life ultimately go on to achieve and to accomplish. When there is a diagnosis that intersects with the dream, that throws a bit of a curve into the whole thing. I mean, you have to step back and recalibrate and do what Emily Colson did, ask the question, “Who is God and where is he in the midst of this?” He was very much present.
Emily Colson joins us again on FamilyLife Today and she just happened to bring her daddy along, who a few of our listeners may know, Chuck Colson. Welcome to the broadcast, Chuck.
Chuck: Thank you Dennis. I’m happy in this new, unaccustomed role of being the set-up man for my daughter.
Dennis: You know, later on – not on today’s broadcast, but later on I’m going to have you introduce her. So we will give you the set-up a little bit later on in the week. Emily, I want to say welcome to you as well.
Emily: Oh, thank you so much. It’s a pleasure to be here.
Dennis: She’s written a book called Dancing With Max: a Mother and Son Who Broke Free. We learned yesterday what it was like for Emily Colson to grow up as a teenager with her daddy going to prison, and a little of their relationship. We’ll not get into that again today, but the book really contains a powerful set of illustrations of how God cemented your relationship back together again as father and daughter. You went away to college, ultimately met a young man, you were married for ten years before you actually got pregnant, and you had a little boy by the name of Max. Why did you and Gary wait so many years to have a baby? Was that planned, or did you have difficulty?
Emily: Well, I think it just didn’t really enter into our plan, and we’d had some struggles in our marriage. At the time that we did decide to plan Max, we really felt that we were ready. I think that we weren’t quite as ready for anything as we thought we were.
Bob: Emily, was there anything during the time when you were pregnant with Max that was an indicator that maybe there was something going on?
Emily: I was one of those moms that never ate a chocolate chip. I was one of those hyper-diligent moms that did everything right. I weighed my food, I just did everything I possibly could, and I had some complications in the pregnancy, but nothing to indicate autism.
Bob: Chuck, were you present when Emily was giving birth? How were you hearing about all of this?
Chuck: No, I was keeping up with it by telephone, dying with anxiety. We went up immediately after Max was born, and I could tell there was something different about Max. Over those first few years, I just kept saying “I hope and pray this is not what it appears to be,” but it showed all the signs of autism from age two on, or age one-and-a-half on.
Dennis: Emily, there was a moment that you wrote about in your book when Gary was holding Max --
Dennis: --and you just felt an urge to pick him up out of his arms and hold him, and there was something special that took place in your own heart.
Emily: Oh, I remember it so clearly. Max came home. I was a new mom and nervous, and all of a sudden we were sitting together, and I looked down at Max at two weeks old, and he’s screaming, crying with his mouth wide open like a big black kidney bean, and something came over me. I looked down at this child, pulled him from my husband’s arms and held him in my arms and said, “It’s okay, Max. It’s okay.” And all of a sudden I could feel this warmth come over me and I know that was the moment that I fell in love with Max.
Dennis: Gary actually commented on it.
Emily: He did. He said, “What just happened to you?” He was kind of sarcastic about it. He saw something completely change in me, and I never went back. I’ve been in love with him ever since.
Bob: What did happen to you? What do you think? If you look back on that moment, what happened?
Emily: I think I understood at that moment that Max wasn’t judging me, he wasn’t testing me to see if I was a perfect parent, he wasn’t expecting me to get it all right. He just needed me to love him, care for him, mistakes and all. All of a sudden, everything just released and I felt as if I could just love this child and be his mom and it was okay if I didn’t have all the answers.
Bob: Caring for Max in that first year had to be an incredibly stressful time. I think about what ultimately happened in your marriage. You guys were drained, both of you—
Bob: --physically, emotionally, caring for your son.
Emily: Absolutely. And people had told me, ”This will be the hardest job you’ve ever done, being a mother,” and so I just assumed that that’s what they were talking about, that the no sleep, the digestive battles -- I thought that that’s what other parents were doing. It wasn’t until I was sitting in a play group with some other moms and I asked the question, “How do all of you do this on two hours of sleep a night?”
Max was probably a few months old at that point, maybe four months old. They all looked at me and stared, and finally, someone said, “Emily, my child sleeps all night.” And the other one said, “My child doesn’t have those digestive battles.” I felt so alone, sitting in that room, looking at all these mothers who were staring at me and my beautiful child. I began to realize, “I have a different journey.”
I had no sleep essentially, for nine years, which is the case for many, many moms with autistic kids. Many dads, many families know what this is all about. But it was pretty tough in that first year.
Dennis: I wrote down what you said in your book. You said, “Love, hate, fear, helplessness,” you said, “I wanted to stop feeling.” You know, after reading your story I can understand that how you would get to the point of wanting to stop feeling such loss.
Chuck: People ask me often about how I reacted to all that, and it was very, very difficult for a dad to watch his daughter suffer that much, particularly when we’d had such a close experience together in that hospital, and now I’m watching her go through terrible experiences. On the other hand, I watched her do something which subsequently has become a great spiritual lesson to me. I saw her completely sacrifice herself to take care of this child, give up everything else, and this is agape love.
You know there are four kinds of love, storge, which is affection, and eros, which is sexual attraction, and phileo, which is a brotherly relationship. Agape love is the one that we’re least capable of, because it means total self-denial.
I’ve only seen it twice. I’ve seen it with Al Quie, who offered to go to prison for me when I was in prison so I could be home with my family. He was willing to give up his career as a congressman and take my place in prison. He tried to, went to President Ford to see if he could do that, that’s agape love.
And what I’ve witnessed with Emily is agape love. So all these things which we are talking about, which are really tough, and this is a painful story – it’s a story that people will identify with Emily because all kinds of – everybody has had pains like this. Maybe not this concentrated as Emily, but you can also learn that God uses suffering and redeems it.
Dennis: I know many of us don’t think of ourselves as being an example of how to suffer, but there’s a book in the Bible that is really written to Christians who were scattered and they were being persecuted. It’s the book of I Peter. It talks about in that book about how we are to suffer and be an example of how Christ suffered on our behalf, and Emily did that.
On the other hand, Emily, your husband didn’t process this quite in the same way as you did, and ultimately, your marriage dissolved in a divorce.
Emily: Max was eighteen months old and he left. That was before I even had the diagnosis, so after going through a really difficult divorce, Max was diagnosed with autism. Yes, that was a pretty difficult time for all of us. And yet God has done so much through this whole thing, and brought us to the most extraordinary place that I can look back now at those places of pain and know that he used it, he has redeemed it. It’s been extraordinary with Max.
Bob: I’m wondering if – and I’m sure you’ve asked yourself this question—I wonder if you’ve come to an answer – If Max hadn’t been born, if he hadn’t had autism, would your marriage have survived, do you think?
Emily: No. I think there would have been another stress that would have created the same kind of reaction.
Bob: So the foundation had cracks and the stress just revealed the cracks that were there.
Emily: That’s exactly it. It just wedged it open.
Dennis: As I read your book, I just couldn’t get away from some of what your dad just mentioned. Being a single parent mom, tackling in the early years something you didn’t know what you were fighting. You didn’t know what you were up against.
Dennis: You hadn’t yet experienced a diagnosis of what Max was coping with, and yet you began to search for solutions and finally found them. I think it would be important to share with our listeners a little of that story of how you finally did get a diagnosis and what your response was at that point.
Emily: It’s really tough to go through this when your child is being evaluated. I’m watching Max being tested, and he’s not getting any of the answers they’re looking for. It’s difficult. I wanted to jump in and change things and intervene and translate, but I needed to stay on the sidelines. So I knew it wasn’t going well, and they are asking all sorts of questions. The evaluators left, went and had a discussion about what was going on, clearly, came back, they sat in these four little chairs and I sat across from them holding Max and he’s kind of playing and having a good time.
Suddenly I realized they were not asking me the same kind of questions they were before. It was very quiet, it was very hushed. They knew then that it was autism. They weren’t going to tell me, but Max leaned into me. He was trying to hug me. I’m trying to get information from these people, because it took a year to get into that hospital, and I finally just gave in.
Max threw himself on me like Garfield on the inside of a car window, just stuck to me, and it was as if I’d been drugged. I just felt that overwhelming love for him, and I leaned into him and I said, “Max, you did a great job today.” I could hear the oohs and aahs from the evaluators; it was as if grace just lapped over the sides and spilled onto them.
Bob: Autism has a spectrum to it. There is severely autistic, mildly autistic, there is Asperger’s, I mean we’ve heard about this autism spectrum. Were they able to in the diagnosis place Max somewhere on that spectrum?
Emily: They placed him simply as autistic. It wasn’t until later on that you begin to sort of understand where the child falls on that spectrum. By the time Max was nine, I really was pretty broken and the autism was so challenging that we could barely even go out of the house because the tantrums were so huge. These aren’t the kinds of tantrums that other kids have when they want to buy something and they throw themselves on the floor. What Max wanted was for the world to make sense and it didn’t, and he was looking to me to give him the answers and to help him to understand the world.
Bob: So you would say he was at the far end of the spectrum?
Emily: He was a pretty complicated child when he was young. Yes, he was. He was pretty severe with autism.
Bob: And I’m guessing, as you described how you were during your pregnancy, very scrupulous not to eat a chocolate chip or do anything that would endanger your child, I’m guessing that in those early years with Max you were doing anything and everything to try to fix this.
Emily: Oh, I most certainly was. I was hunting down specialists like a crazed groupie. I was sure that somebody had the answer and I needed them to help us. We hit a lot of dead ends.
Bob: So if a mom came to you today with a four-year-old who has been diagnosed and who is throwing tantrums and said, “Okay, I’ve read about these dietary things I can do, or about color therapy that I can do, or there are things you can do with sonic waves” – she’s found it all on the internet – what would you say to her?
Emily: I think that there are some things that are reasonable that we absolutely do have to pursue, and some of those things that aren’t so conventional can actually have a really powerful impact on our kids. The challenge is, we don’t know what treatment works for that particular child. There’s no set formula, there’s no set guarantee that will work with every single child.
Bob: So do you try everything?
Emily: Well, I think you try a lot of things.
Chuck: Actually, what Emily did that unlocked the problem with Max was really quite ingenious, and actually would be helpful to people who have this kind of a situation. Tell them what you did that finally enabled Max to make sense of the world around him.
Emily: This is truly an answer to prayer. I had been praying for God to lift Max’s anxiety. I thought if there’s one thing that’s really holding us back and changing his life, it’s that anxiety for life. So, I began drawing pictures for Max, as an artist drawing pictures of life and how it was happening and unfolding around him at the time. I was translating life real time into pictures.
Very quickly Max made suggestions of what he wanted me to draw, and he started telling me things he was afraid of from eight years prior, his hopes, his dreams, his fears, his thoughts. Everything began to spill out when he saw it land on the page and become concrete and tangible on paper.
Now that was ten years ago. We have about 1400 of these drawings now, these conversations. It’s really Max’s diary. I can see the progression in Max over the past ten years. The drawings from earlier were all about his fears and things that he couldn’t understand in life. Now, his drawings are about things he’s interested in, people he wants to see, singers he hopes will come over and have dinner at our house.
Dennis: I wonder where he got all these dreams. Could it be he got them from his mom, because when you were given a diagnosis that said Max wouldn’t be able to do any of these things, you shot back at them, “No, my son will be –“ What? What did you say?
Emily: Oh, we had a really nasty fellow in the school system one day who was almost making fun of Max. Truthfully, it was really a painful time. I pointed my finger into the air and I said, “Max is going to be a bridge designer some day. You just watch.” Truthfully, what has happened is that Max has been a tremendous bridge in teaching us the things of God and connecting us and connecting people. He has been the bridge.
Chuck: You know, we are so limited in our thinking on life. We are going to put people in little boxes, and we’re going to say, “This person can do this. This person can do that.” God can do anything, and he shows us and confounds the wisdom of the world by taking someone like Max and using him for something really great. He’s a gift. Max is a gift.
Emily: He is. I had a wonderful friend when Max was diagnosed. We called her Peppermint Patty. She said to me, “God works through these children. Max is a gift.” She said, “You’re going to have to wait a while. It might take you a few years to know what that really means.”
Well now that Max is nineteen, I get it. I understand what Peppermint Patty was talking about. It’s an extraordinary gift. Max is, at nineteen years old, known as “the Joy Boy.” He has brought out the most extraordinary things in other people. This kindness and graciousness in other people for the things that they’ve done for Max has been amazing.
Dennis: You know, I’ve got an idea. It’s coming up on Christmas, and you’re looking for a meaningful gift to give your family. I’d encourage folks to get a copy of Dancing With Max. It’s got 28, 29 chapters in it, and the chapters are short. It would make a great family time, once a week, that’s almost half of a year, to maybe have your own dance with Max at the dinner table, and go to school on this young lad and pick up some of the joy that he has to pass around. I think it might be a good idea for a lot of families.
Bob: Of course we’ve got copies of the book in our FamilyLife Today Resource Center. You can go online at FamilyLifeToday.com to request a copy of the book Dancing With Max, or you can call us toll free at 1-800-FLTODAY, 1-800-358-6329. That’s 1-800, F as in “Family,” L as in “Life,” and then the word “Today.” Or again, online you can find out more about Dancing With Max at our website, FamilyLifeToday.com.
You know, every so often I will meet folks who are new listeners to FamilyLife Today, folks who, although we’ve been doing this program for now more than 18 years, they’ve just started listening in the last three or four or five years, or in some cases, just the last few months. It’s always fun to get to know new listeners and to find out a little about their story. If you are one of those new listeners to FamilyLife Today and you don’t know much about us or about the ministry, I want to encourage you to get to know us, to go online, to check out FamilyLifeToday.com, see what all is available.
In fact, we’ve got a gift we’d like to give you. It’s a Christmas book written and illustrated by Barbara Rainey. It’s called When Christmas Came. This is a book where Barbara takes what is arguably the best-known verse in all of Scripture, John 3:16, and looks at the Christmas account through the lens of that verse. If you’d like a copy of the book to share with your family during the holiday season, contact us online at FamilyLifeToday.com, or call 1-800-FLTODAY and simply request it. Just ask for a copy of the book When Christmas Came. We’re happy to send it out to you, and we hope it helps you get to know who we are a little bit better.
Again, our website is FamilyLifeToday.com, or you can call us toll-free at 1-800-FLTODAY, 1-800-358-6329, that’s 1-800- “F” as in Family, “L” as in Life, and then the word, “Today.”
Now tomorrow we are going to hear more from Chuck and Emily Colson. Emily is going to share with us about Max in his teen years and his young adult life, and about what the future holds. That comes up tomorrow, and I hope you can be with us for that.
I want to thank our engineer today, Keith Lynch, and our entire broadcast production team. On behalf of our host, Dennis Rainey, I'm Bob Lepine. We will see you back tomorrow for another edition of FamilyLife Today.
FamilyLife Today is a production of FamilyLife of Little Rock, Arkansas.
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