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The Unexpected Joys of Raising an Autistic Child (Part 2 of 2)

Original Air date 09/24/2010

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Emily Colson talks about the trials and triumphs she's experienced in raising her autistic son, Max. Her father, author Chuck Colson, joins the conversation to discuss the lessons they've learned from Max which underscore the sanctity of all human life. (Part 2 of 2)

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Episode Transcript

Opening:

Recap:

Emily Colson: Well, autism can be extremely challenging and there are families who are struggling every day and yet, what I've seen in Max is that, this boy that others might dismiss, has the power to affect others in such a deep and beautiful way, that it almost washes over the difficulties.

End of Recap

John Fuller: Well, "almost" is a key phrase there and as a dad to a son with autism, I can really understand firsthand some of the difficulties and the joys that Emily Colson is referring to there. This is "Focus on the Family" with Focus president, Jim Daly. I'm John Fuller and as I said, Emily Colson [is] on the program, along with her father, the late Chuck Colson.

Jim Daly: John, I so miss Chuck. What a loss it was when he passed away, but you know what? I love it. He used to talk about knowing fully when you leave this earth and he knows fully now. He doesn't look through a glass dimly. He knows what's on the other side. And even though he passed away a few years ago, I can still feel his influence in my life and in this culture today, on so many of us.

And John, I feel for you and Dena and for Emily, as parents of autistic children. That's something that we have not experienced, Jean and myself, so I know there must be many, many difficult days, but like you said, also days of joy. And I know just regular parenting can be really tough, so my heart goes out to you in that way.

John: Thanks, Jim.

Jim: For our listeners, you may have rebellious children who challenge you to your absolute limit. There doesn't have to be any kind of other condition. They're just tough. Or maybe you have a child with another type of limitation. Maybe it's a developmental issue or a childhood cancer. My nephew had that and that was not easy for his mom and dad, my brother and sister-in-law.

But there are a number of things that can really take the wind out of our sails. And sometimes we just need people to wrap themselves around our families for a period of time and to lend some support. It makes a world of difference.

And today as we air this second half of this powerful story with Chuck and Emily Colson, we hope you will be encouraged to look for a family or two, maybe in your church or just your neighborhood, who need a little help, that maybe you and your family can provide. It's a great lesson for your children. If you missed the first half of our conversation, get a CD or a download and I know it'll touch your heart.

John: Let's go ahead and hear Chuck Colson and his daughter, Emily on today's "Focus on the Family."

Body:

Jim: Emily, in the book, you share a story that involves you, Chuck. It's the Prison Fellowship Angel Tree project and Max participated with you. And something you said in there just struck me. But set that up for us and then I'll mention the quote.

Emily: Oh, sure. Well, we took Max when he was about 2-years-old to deliver Angel Tree gifts. And my dad and Patty do this every year. And I brought Max along, knowing that we might not really be able to go into the house where the family was and deliver the gifts. We might have to wait outside. He's just 2-years-old. He really couldn't cope with much at that point.

And the whole way in the car, we kept telling Max, "This family needs love. Their dad or mom (I'm not sure which one it was) couldn't be with them at Christmas and couldn't be there with the kids. So, they might feel a little sad and they need love." So, when we got there and walked into the house and I'm holding Max on my hip and trying to hold him tightly--

Jim: Right.

Emily: --so that he wouldn't get nervous. And he got inside and he started to wiggle out of my arms. Got down on the floor, toddled over to one of the girls and pressed his cheek up against hers and then, walked over to the other little girl who was on the floor and just pushed his cheek up to her and just stayed there until they almost melted into one--it was so powerful--and then came back to me. And I picked Max up and I looked at my dad. I mean, Max would never leave me at that point. He was just glued around my neck.

Jim: And that gave you that insight, that although perhaps he can't express himself in what we could call the normal way, he is hearing you. He is absorbing it.

Emily: He is.

Jim: And what you said in the book, I mean, it brought tears to my eyes, Emily, 'cause you said, "This child, who is incapable of uttering a single word, spoke more clearly that day than any of us." That is beautiful.

Emily: And he did.

Jim: How do you, as mom and John, perhaps as you were thinking here, you as a father, how do you fight through the tough moments, the endless tantrums, to see the beauty, to say, "Okay, God has created these children in His image and this is His expression in them? How do you hang onto those threads of beauty?

Emily: Well, I had sort of a turning point in my life when it became so difficult. Max was 9-years-old and the tantrums were so significant that we could hardly get out of the house. And by the end of the day, I was so exhausted, just from dealing with life, that when Max was finally upstairs in bed and sometimes he'd sleep for maybe an hour, maybe two hours, I was too tired to go to bed.

And I would come downstairs and sit in this one rocking chair and just stare at the wall, because I wanted to stop feeling. I wanted it all to just stop for a moment. And I found one night a hole in the wall (Chuckling).

Jim: Hm.

Emily: And the next day I took Max over and I said, "Max, what happened here?" Max was always bumping into things and crashing against things and breaking things in the house. And I brought him over to that hole and I said, "What happened?" And he didn't answer and I kept setting up the question differently, but I wasn't getting a response.

So, I thought, "Oh, I bet he bumped it with the vacuum cleaner." It was such a perfect round hole. And so, I opened the closet door to get the vacuum to see if it would fit into the hole and I realized that the doorknob fit perfectly into the hole in the wall, only Max hadn't done it. I had, when in the middle of the night in one of my rocking chair moments, I got up and decided I would clean, that maybe that would make me feel better. And a shelf broke and that just broke me and I took that door and I swung it open so hard that I punched a hole in the wall.

Jim: Hm.

Emily: And seeing that, seeing what I had done in my own tantrum, in my own inability to cope with life, really broke me and that night I made a commitment that we couldn't live like this any longer. We were hostages of autism.

Jim: Hm.

Emily: And we weren't living. And so, I decided that I would wake up the next morning and I would say and believe, "This is my last day alive." Because truthfully, I couldn't imagine how I was gonna keep doing this. I knew I wasn't gonna quit, but I had no idea how I was gonna keep going.

Jim: So, you learned to embrace--

Emily: So--

Jim: --it.

Emily: --I said, "One day, I can do one. I'm gonna enjoy this one day with my son." And so, that's when we started, just going out no matter what. I thought, why will I care if it's my last day alive? Why will I care if people stare? Why will I care if people are unkind? It's one day; I can do it. And so, it turned things around for us and we just went for it. (Laughing) We just decided, we're gonna get up and live. We're gonna live brave and go for it.

Jim: Did you feel relaxed after that? Was there a sense of--

Emily: It was--

Jim: --being relaxed?

Emily: --horrible. (Laughing)

Jim: It was horrible after that.

Emily: It was the most frightening concept, but I knew we couldn't stay where we were. So, it wasn't this moment of, you know, "Yeah! We're gonna go for it and everything's gonna be great!" This was my last shred of hope, only going on the strength that is God's--

Jim: Hm.

Emily: --not my own. I was done. I was out of strength.

John: In a beautiful way.

Emily: Thank you.

Jim: Talk about the car. Yeah, the car was a great story in the book where he loves, Chuck, your car and tell us about that, how much he enjoyed your--

John: Was it the seats--

Jim: --dad's car.

John: --the car seats.

Emily: Oh--

Jim: Yeah.

John: Yeah.

Emily: --car seats. Max adores seats out of cars. He loves cars, but he really loves the leather seats. So, my dad had a car that came to us, that we then passed to my niece. By the time the engine died, Max actually had started the letter-writing campaign to be next in line to inherit this car. He didn't want to drive it fortunately; he just wanted the seats.

So, my brother, Wendell and his two daughters, helped Max one day, take the seats out of the car and together, they all built the chair bases on the seats.

Jim: Right in your living room.

Emily: Oh, now those Audi seats are right in our living room.

Jim: And Max loves it.

Emily: That's Max's car.

John: Wasn't there a situation though before those seats came to your home, where Max saw somebody else's car?

Emily: Oh--

Jim: Thought it was Chuck's.

Emily: --oh, yes and he jumped into it. Yes, he did.

John: So, you're in a parking lot.

Emily: We're in a parking lot and he flew into this woman's car when she opened her door to get out (Laughter), which is really--

John: A bit of a shock--

Emily: --an icebreaker.

John: --okay.

Jim: For her.

John: So you're a parent and your child just goes in somebody's car. (Laughter) You gotta laugh. Tell us about that. And the--

Emily: It's great way to--

John: --woman responded.

Emily: --meet people.

Jim: She responded very well though, didn't she.

Emily: She was wonderful. She was so calm. She looked as if it happened every single day. She was absolutely a delight. And it turned out that she invited us every time that we would see her car, we could be able to sit in her car and enjoy it. And one day we exchanged phone numbers. And she called me one day and she said, "I just have to tell you, there's some bad news. We're turning in the car." And Max and I rushed over. We were like grieving relatives.

Jim: To say goodbye.

Emily: (Weeping voice) Can't get rid of this car! But the lovely thing that came of that, is that while we're playing in her car, we met her husband, who I began to talk to about Max and he was curious. And [it] turned out, he was on the board of the youth baseball league in our town.

Jim: (Chuckling)

Emily: And so, from Max leaping into this woman's car, there's a baseball team (Laughing) for about--

John: For special needs--

Emily: --30 or--

John: --yes.

Emily: --40 special-needs kids.

Jim: That's something.

Emily: So, you never know--

Jim: You never know.

Emily: --what can happen with our kids. And you do have to laugh. You do.

Program Note:

John: Well, that's a great perspective to have from Emily Colson on today's "Focus on the Family." You do have to laugh at some of the children's activities and what they say and some of those circumstances you find yourself in. I'm John Fuller. Our host is Jim Daly and we're talking with Emily and her father, the late Chuck Colson about Max, who obviously, has been used in some pretty powerful ways in their lives.

And it may be that you have a special-needs child and you can't laugh. Really all you can do is cry because it's so very difficult. Focus on the Family understands and we care and we have trained Christian counselors who are available to listen to you, to offer some compassion, maybe point you to some resources. And they're just a phone call away. Our number is 800, the letter A and the word FAMILY, 800-232-6459.

And we've got a variety of resources and helps for you, as well as the CD and download of this program at www.focusonthefamily.com/radio. Let's go ahead and continue. Here's Jim Daly, speaking with Emily Colson and the late Chuck Colson on "Focus on the Family."

End of Program Note

Jim: Knowing what you know and going through what you've gone through, talk to me as a parent who has an autistic child. What advice would you provide? I know you should first go get the book, Dancing with Max. That would be a wonderful start. But speak to me today. Help me understand how to take that deep breath and not be--

Emily: Uh-hm.

Jim: --too concerned.

Emily: Uh-hm. Well, you're really the one that I wrote the book for. And every time I sat down to write, I looked back at that rocking chair that I used to sit in when I was so broken and so desperate and wondering if there was any hope other than curing my child and it didn't seem to be happening that he was going to be cured.

And I know what a struggle this is. I know how difficult it can be, how we go without sleep. We can't get to the store. We feel isolated. I understand that, but I will promise you, that God will work through your child and seeing that is so much more beautiful than any of the struggle.

So, I'd tell you to hold on, but it will get better. There will be beauty. There will be goodness. I promise and so does God.

Jim: Hm.

John: Emily, I think what you said was so reflective of where God has brought us in the journey and that is, to not look at my child as a mistake.

Emily: Uh-hm.

John: I think it's easy for us when we have these unmet expectations and when you go through so many awkward moments in public and when you just don't have an answer--

Emily: Uh-hm.

John: --for this child.

Emily: Uh-hm.

John: And he's helped me to see the value of trying to get inside--

Emily: Uh-hm.

John: --and to experience life as my child is and to recognize that He made that baby, who grew up to be this child here, who is so challenging. And the truth is, I am so much like that child--

Emily: Right.

John: --with God, my Father.

Jim: Hm.

Emily: Right.

John: One of my coping mechanisms is to say, "Lord, I am so much like him with You. What can I learn here?"

Chuck Colson: Let me just put one perspective on as the granddad here. Two events in my life I thought were catastrophic. One was going to prison and the other was a daughter having to raise alone an autistic kid, who at that time was a real handful.

Jim: Hm.

Chuck: And I couldn't see anything that could possibly good come out of either one of them. Out of prison, came a ministry around the world and I've seen how God has used adversity for the greatest joys and blessings of other people.

And in Emily's case, I have seen how this little guy has changed me profoundly. The relationship between Emily and this boy has given me a whole new look at what God's love is. He's brought us so closer together, so much closer together, as a dad with his daughter.

He's brought out gifts in Emily that I didn't know she had. But I really have seen her growth in Christ in a way that never would've happened except for Max. And when you consider the eternal consequences, Max is a gift. Emily's friend, Patty was absolutely right. He's a gift; he's a blessing.

Jim: You know, Chuck, you're saying something there that has broader context and broader meaning for all of us, 'cause not all of us have an autistic child, but we do have difficulty. It comes in all kinds of forms.

Emily: Uh-hm.

Jim: And for we, as the Christian community, we need to see those opportunities to deepen our dependence on God and to trust Him more. And when we do that, we're closer to Him. Isn't that true?

Emily: Uh-hm.

Chuck: That's exactly right. He uses these things to bring us to a point of total dependence on Him. Then He really works His wonders. And so, don't look at these as the down moments of your life. You will at the time. You will think this is the end of the world. God will turn it around and use it in the most amazing ways.

Jim: Hm.

Chuck: I mean, we think today life should be measured by how productive it is to society. And that's why in every society that has lost the Christian ethic, the paraplegics and the quadriplegics and the people who are invalids and unable to produce anything are the first to go. That was the case with Nazis.

But these are the people who teach us more than anybody else can teach us. These people have value and importance--

Jim: Right.

Chuck: --and life that can't be quantified by how much they can produce.

Jim: Amazing.

Chuck: These people have a great blessing and great message to teach us.

Jim: Emily, talk about Max's faith. I understand that he is baptized.

Emily: He was baptized.

Jim: Help us understand--

Emily: Yes, he--

Jim: --that.

Emily: --was. It was really beautiful. We were in church in Florida with my dad and Patty and Max has always had a difficult time in church. He was fine when he was very young. He could go with me, bounce on my knee. He loved the music. He could manage the classrooms. But as he grew a little older, church became like so many things for us. We just stopped going. We just couldn't do it.

And you know, so many families with autistic kids are hidden from the eyes of the church, because they can't get to the door. They can't go. So, I don't think our churches even know how big an issue this is.

Jim: Hm.

Emily: But in Florida, my dad's church has this wonderful big "megalobby" with televisions and nice cozy chairs. So, we were out there, perfect spot for us. I could see the service and Max could be Max. And we saw a woman baptized on the television monitor in the service. And Max is watching the television and he said, "What's that?" And I explained what was happening and that she was being baptized and what it meant.

And a few minutes later, Max said, "I want to be baptized in Grandpa's pool." (Laughing) "You what?" (Laughter) and we went through this back and forth.

Jim: But he got it.

Emily: He understood what it was. He understood what it was. And so, we walked into the pool; Max walked into the pool so calmly. He knew it was different. He knew it was special. And my dad, who's been such a strong influence in my faith, baptized Max.

Jim: Hm.

John: Chuck, do I understand that there's a picture that commemorates that baptism, that dunking that you did of Max? It was some years ago that you shared with me, there's a picture that has special prominence in your study.

Chuck: Yeah, there is. I have my "ego wall," like everybody else does and pictures of all the Presidents and all the famous leaders and the Pope.

Jim: The "ego wall."

Chuck: Right in the middle of it--I confess it; everybody does--and right in the middle of it is this big frame with a picture of me baptizing Max at the moment I'm baptizing him that Emily had taken, along with the drawing, explaining it all. And that's in the absolute prized position in my house. When somebody comes to the house, that's the first thing I want 'em to see.

Jim: More than anything.

Chuck: More than anything, more than the presidential medals or the Templeton Prize or all that stuff. I want 'em to see that picture.

Jim: Emily, it's been wonderful to talk with you about your new book, Dancing with Max and what you've learned as a mom--

Emily: Thank you.

Jim: --of Max and how you've shared that with other moms and dads today and before. And Chuck, just so good to have you. Thanks, Grandpa--

Chuck: Uh! Thank you. (Laughter)

Jim: --for being here and the grandfather you've been--

Chuck: Yeah.

Jim: --to Max.

Chuck: Yeah, that's the role I enjoy most in life now in all my busyness, it's just to be a dad to these wonderful kids that I have and a proud grandparent, particularly the special relationship with Max.

Jim: Emily, obviously, you have invested now 19 years of your life into Max.

Emily: Uh-hm.

Jim: What are your hopes for his future? And Grandpa Chuck (Chuckling), I think that question'll come right back to you, as well. So, Emily, what do you see?

Emily: That's a really difficult question, very hard. Ten years ago I would've had no idea how to answer that when I was in the pit. I would've said, my hope is just to be able to survive.

Jim: Hm.

Emily: But I've seen so much joy in Max, my hope is that his joy will continue and that he will continue to influence other people. On a practical level, I hope he will have something that he can go to in his adult life, whether it's a paying job or a volunteering job, whatever it might be that he feels that he's making a contribution, that he feels useful and needed and valued, because that is very powerful in Max. He volunteers in our church. And I will tell you that on Sunday mornings, he bounces out of bed, because he knows he's needed. And he's important and--

Jim: Uh-hm.

Emily: --he has a role to play, where other people are counting on him. So, I hope and pray that there will be that opportunity for him. It's a scary thing. There's an awful lot of adults [sic] that are coming into this system with autism that they're coming into a system that really doesn't know how to deal with autistic kids.

Jim: Hm.

Chuck: Jim, this is where the church really has to step up, because at age 22, they start losing all of their state support and they're really cast out on their own. And families have gotta come up with some creative ways to help these kids in need. And if they have a mother like Emily, who can continue to care for 'em, that's great. All of them don't. And so, this is a huge problem. And the government is cutting out all kinds of benefits to these kids.

Emily: Uh-hm.

Chuck: And with the budget crunch, they're gonna be cutting out more.

Emily: Uh-hm.

Jim: Yeah.

Chuck: So, the church really has to step up. This is a big human problem here.

Emily: Uh-hm.

Chuck: And what's Emily's hope for the future? That Max can have as full, a rich life as possible, but--

Jim: Yeah.

Chuck: --that's gonna take a lot of help from a lot of different places and not just ... government handouts can't do it anyway. So, maybe it's better. Maybe the church'll step up to this one.

John: Hm.

Emily: It's a great opportunity right now.

Jim: Yep, yeah, it is; it is. And John, I just so appreciate you and just that emotion that you talked about. We're praying for you and Dena and we love you guys.

John: Thank you. God's been very good and He's taught us so much. And he's just 7; I can't wait 12 years from now when he's 19, like Max is, to see what God does.

Jim: Well, you all have handled it so well. Thanks for teaching us a little more about our Christian walk.

Emily: Thank you. Thank you for letting us share this.

Closing:

John: As you can tell, some tender hearts in the studio on that day as we visited with the late Chuck Colson and his daughter, Emily. And this was recorded about four or five years ago and since that time, one of our producers got an update from Emily just to see how they're doing. And Max graduated from his special needs school and has three very part-time jobs, as she describes them. And he serves faithfully at church and every night he tucks a picture of Grandpa Chuck under his pillow. And as Jim indicated, please continue to pray for Emily and Max.

Now we've got a picture of Max's baptism that Chuck mentioned from his "ego wall" and some of the pictures that Emily drew with Max, which helped him process information. And you'll find those and some encouraging materials that affirm the value of every life at www.focusonthefamily.com/radio.

And while you're there, you'll also find encouraging material that affirms the value of every life. It's our Be a Voice campaign and you'll find details, downloads, materials, articles and more at www.focusonthefamily.com/radio. And if you'd prefer to call us and ask about helps and resources, we'd invite your call. Our number is 800-A-FAMILY.

And I think I mentioned this earlier, but I could not read Emily's heartwarming book, Dancing with Max without tearing up repeatedly. She captures so very well the joys of life with Max and so, please make sure that you get a copy of that. We've got details online or we can tell you more when you call.

And it'd be our privilege to send that book to you when you make a generous donation to the work of Focus on the Family, as we lift up life and come alongside families dealing with challenges. We need your financial partnership and so, for a gift of any amount, we'll send Dancing with Max to you as our way of expressing appreciation. Our number again is 800, the letter A and the word FAMILY.

Our program was provided by Focus on the Family and on behalf of Jim Daly and the entire team, I'm John Fuller, thanking you for joining us and inviting you back tomorrow, when we'll have a special Good Friday program with Dr. Tony Evans and once again, help you thrive in Christ.

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More Episode Resources

Guest

Emily Colson

View Bio

Emily Colson is an artist, author and speaker. In her book Dancing with Max – awarded "Book of the Year" by the Austism Society – Emily and her father, the late Chuck Colson, share the struggle and beauty of life with Emily’s autistic son, Max. Emily has told her story of hope throughout churches nationwide, as well as on numerous media outlets. She is passionate about engaging families affected by disability with the church. Emily has been a single mother for most of Max’s life, and currently resides in the New England area.

Guest

Charles Colson

View Bio

Chuck Colson (1931-2012) was the founder of Prison Fellowship Ministries, a Christian outreach to inmates, ex-inmates, crime victims and their families. He was also the founder and chairman of The Chuck Colson Center for Worldview which seeks to build and resource a movement of Christians committed to living and defending the Christian worldview. Well-known as the aide to former President Richard Nixon, Chuck was also popular as an author, speaker and as a commentator for the nationally syndicated radio broadcast "BreakPoint." Chuck is survived by his wife, Patty, their three children and several grandchildren.