Understanding Autism: Supporting Struggling Parents - Part 2 (Transcript)

Dr. James Dobson: Well, hello everyone. I'm James Dobson and you're listening to Family Talk, a listener-supported ministry. In fact, thank you so much for being part of that support for James Dobson Family Institute.

Roger Marsh: Hello everyone. You're listening to Family Talk, the broadcast division of the Dr. James Dobson Family Institute and I'm Roger Marsh. April is National Autism Acceptance Month. Did you know that one in 54 children in the United States has been identified with Autism Spectrum Disorder? The autism community is growing and here at Family Talk, we are striving to encourage families who have or know a child with autism. I know personally in the Marsh household, my nephew, Ian is autistic and just a wonderful beacon of light who loves the Lord but deals with special needs. According to the Autism Society, autism is a complex lifelong developmental disability that typically appears during childhood and can impact a person's social skills, communication, relationships, and self-regulation. Today's guest here on the broadcast, know how it feels to have a child who is diagnosed with autism spectrum disorder. Mark and Jennifer Shaffer's eldest son was diagnosed with severe autism just after his third birthday.

Roger Marsh: This realization shook Mark and Jenny's world, but through much hard work and prayer with diet and biomedical interventions, their son is now a thriving young adult with a high-functioning autism. Mark and Jenny had been married for 27 years and they're our guests today here on Family Talk, along with Dr. Jerry Kartzinel. Dr. Kartzinel is a board-certified pediatrician and a Fellow in the American Academy of Pediatrics. After completing his medical degree at St. Louis University School of Medicine, he completed his residency in pediatric medicine while serving in the Air Force. Following Desert Storm, Dr. Kartzinel practice general pediatrics and private practice for 10 years until his fourth boy was diagnosed with autism. Today, we'll be sharing the second half of this important interview. To listen to the first half, by the way, just visit drjamesdobson.org. Here now is our own Dr. Tim Clinton with Mark and Jenny Shaffer and Dr. Jerry Kartzinel.

Dr. Tim Clinton: We're blessed to have all of you here on Family Talk. By the way, you're listening to Dr. James Dobson's Family Talk. I'm Dr. Tim Clinton, president of the American Association of Christian Counselors filling in for Dr. Dobson today. We're talking about autism. It's Autism Awareness Month, this month, and we're celebrating that and celebrating the families and the lives of those who are out there, who are dealing with this every day, and trying to raise kids and love on them and help them to find their way and their place in this big old world that we live in. Dr. Jerry, and I'm going to ask both you, the two of you too Mark and Jenny, everybody always asks the question, why? Some people would relate it back from what I've seen to vaccinations and so many different things. You guys, no doubt, have just searched high and low. Why? Why? Why? Dr. Jerry, let me start with you. Maybe you can throw in some wisdom our way, and I'll come back to Mark and Jenny on it.

Dr. Jerry Kartzinel: Okay. Well, first of all, we have to keep in mind that this is a worldwide phenomenon, this increase in autistic children. In my medical training, back in the 80s, the autism rate was between one in four per 10,000. Okay. And I've watched it go to one in 500, 1 in 188. So something is affecting these children and there's nothing that we can call a genetic epidemic that affects all people all around the country, all around the world. So something is definitely impacting our children in a negative way. And there has to be a hard look at anything that we're doing to our children, cause and effect, whether it be the pesticides or ultrasounds or low vitamin D levels in pregnant moms. And I mean, there's lots of different theories. And of course, one of them is vaccines.

Dr. Jerry Kartzinel: As a doctor who listens to histories, I do hear over and over parents concerned about vaccines, potentially being a trigger for this. But I also have kids who have not been vaccinated in my clinic who have also developed autism. So I don't think it's a very clear picture. I think the biggest things that we have to focus on would be that there's actually really good treatments out there for our children to bring them back into our world, to be able to respond to stimuli, to be able to communicate with us, to be actually accomplish developmental milestones that until now, most people would have just written off.

Dr. Tim Clinton: Let's help our listeners to understand this for a moment. Yeah. What's it like behind the closed doors in an autistic home?

Mark Shaffer: My wife just-

Dr. Tim Clinton: Many, many stories, Jenny-

Jenny Shaffer: It's like a rollercoaster and your... It's like a tight rope walk. The school...

Mark Shaffer: Yeah.

Jenny Shaffer: The school-

Mark Shaffer: Dealing with schools is different.

Jenny Shaffer: Tightrope walking that. Do I go in and talk to the teachers? Do I lay back? You're constantly trying to figure out, how to manage them.

Mark Shaffer: But if it's not the schools, it's medical practices, it's therapies.

Dr. Tim Clinton: What do you want the church to know? I mean, I hear the spiritual dynamic here for a moment. What do you want people of faith to know about autism and autistic families?

Jenny Shaffer: Right off the bat when you asked me that, I was struggling to get help. And I don't mean just dumping him off at a program or whatever, but we, us parents, we need a body. We need somebody to come into the home and help us. And I didn't have that, I mean, the area we were living in, nobody really wanted to do it.

Dr. Tim Clinton: You're right. You isolate.

Jenny Shaffer: Yeah. And so I just kind of started hitting a bottom and I just finally wrote a letter to the youth pastor at our church. And I asked, I said, "I need help. I need somebody that will come and just be with him for a while so I can get dishes done or do laundry. I'm not asking for much." And you know what? This girl from the youth group showed up at the door and just came two to three times a week. We set up a schedule. She'd come for a few hours. My encouragement to parents out there is get involved at the church. If that church isn't accommodating your kid, move on, keep looking. There are churches out there that will accommodate your kids, keep looking and don't give up and ask for help. People don't know what you need. They don't know what we need. They don't even know what you're going through, but you have to tell them what you're going through and ask for help. And don't stop until you get it.

Dr. Tim Clinton: Part of it is lack of understanding and fear. There's fear. They're afraid. You know what I'm saying? And they're afraid of being overwhelmed. They didn't even know how to embrace this child. Say severe, you hear what I'm saying? What do I do?

Mark Shaffer: Yeah.

Dr. Tim Clinton: Making back to Dr. Jerry. Again, he's a pediatrician. Also has a son who is autistic. Jerry, my first question was why, but obviously this conversation's moving to how? What do you, I mean, you live this and you help people. You're helping this family, you're helping Mark and Jenny and more, what's your wisdom for us?

Dr. Jerry Kartzinel: Well, first of all, realize that as you've mentioned, as if we're bringing out, it's very, very difficult to raise a special needs child. They bring to us a whole plethora of medical issues that can be treated. The biggest thing for my wife, she would say, "I can deal with just about anything during the day shift, just get me eight hours of unadulterated sleep each night." So we have to get our kids functioning at a better level. We're not asking for the cure. We just want them to be comfortable in the skin they're in and happy. I think reaching out to the church is huge. Some of my wife's nastiest looks she got were from her, and I put this in 1980s air quotes, from her sisters in Christ. The number would pop up on the screen and we'd have to go pick up Joshua.

Dr. Jerry Kartzinel: They didn't help us out to the car. He's tantruming. He's just landing gear up. We're dragging him across the parking lot, poor guy. And nobody calls us up and says, "How are things going?" Nobody wants to bring us over dinner or anything like that. And it's like you said, earlier, poor parenting. I said, "Look, I'm a pediatrician. I've raised three other boys, I know what I'm doing. It's not parenting issues." I think the biggest thing is to know that there is a lot of relief to be had. That these kids can be working at a much higher level, an easier level, a fun level and to enjoy them and look for mentors who've been down the road. I mean, Jenny and Mark, if anybody asks them, how do we deal with this? What's the approach?

Dr. Jerry Kartzinel: We have mentors all in the churches now who have had special needs kids, who've been down that road, who can come alongside these younger parents and give them relief and the support and the knowledge that they need. And I think that's really, really important that God does love each of us that God will provide for us. We just have to ask because sometimes we don't ask. And of course, nobody knows. I was at a church once where I was trying to start a small group, just with parents, with kids on the spectrum. And I couldn't get the church to support taking care of the kids on a Wednesday night. So the rest of it, I said, "Look, I'll lead. You don't have to even bring it back. I'll lead this small group."

Dr. Jerry Kartzinel: And then you go to a church and they say, "Absolutely whatever you need. We've got it." There's a huge number of moms and dads out there who are dying to get back into the church, but they don't know what to do with their kids. Once we get that fixed, get that spiritual link back up, then we can unleash God's power to help these kids. It's just amazing that way.

Dr. Tim Clinton: Jerry, what are we going to do in the medical community? Because of the debate that's out there. You hear what I'm saying about autistic kids and this diagnosis. What's your word on that?

Dr. Jerry Kartzinel: I think again, knowledge is huge and the internet among some of the things that it can do is provide knowledge and help us to know that there are things that we can do. You're absolutely right. Even today you can get diagnosed at one of the major medical institutions and they'll say, "Oh, by the way, don't try that gluten free, dairy free diet. It's a bunch of hooey for these kids. And just go ahead and sign them up in a residential care program. And maybe by the time he's old enough, he'll get in." And I got to tell you 70 to 80% of the kids that I take care of, they respond dramatically to a gluten free, dairy free diet.

Dr. Tim Clinton: Wow.

Mark Shaffer: That was life-changing.

Dr. Tim Clinton: Oh yes.

Jenny Shaffer: Oh my gosh. When I took my son off of just dairy and you have to, I had to take him off casein, which is the protein molecule. And back then, that was hard. You'd have to call around and find out if the product had casein, blah, blah, blah. Anyways, when I took him off dairy, he improved so much that our neighbors on the street asked us if we had put him on Ritalin. And I said, "No." They're like, "What are you doing? Because he's doing so much better." And I said, "I just took him off dairy. That was it." I hadn't even taken him off the gluten yet.

Mark Shaffer: They described it as a fog has lifted from him.

Dr. Tim Clinton: Wow.

Jenny Shaffer: They were like, "He's doing so good." Six weeks later, I took him off.

Dr. Jerry Kartzinel: That's the parents want to hear. That's what they want us with their kids. They want to see improvement.

Jenny Shaffer: You really got to do it. You can't go, "Oh, today I'll just roll in to Taco Bell and tell him to take the cheese off." You really have to do it. I was home with my son for a year and just kept him out of all of the programs, because he was left out on the playground in a special day class alone

Mark Shaffer: That had access to a street. He could have just walked right off. No one would have known.

Jenny Shaffer: It was just one of those horrible things that happened.But in a way it was good in that I realized no one's going to take care of him better than us. So I did the diet, got him off gluten. He didn't eat for two days. He was detoxing off the gluten. And once I got him through that, he started eating avocados. He started eating lettuce, like all this stuff that he never ate. He had bowel movements. He says, "poopoo goes in toilet" and goes and does a poo in the toilet. He was three.

Mark Shaffer: He would eat anything we put in front of him. Before that he was such a picky eater. It had to have cheese in it. It had to have gluten.

Dr. Tim Clinton: Macaroni and cheese. Isn't that interesting. Cheesy.

Jenny Shaffer: The food he was addicted to, was giving him his symptoms. So then once we got him off, the gluten, his hands went down. He started making eye contact. Mark and I looked at each other and said, you know what, all these programs and stuff we have him in that is not the answer. And we did this hardcore diet for a year. I lived kosher. I had separate pans. I had two toasters. I really kept him off of it. And we healed up his gut. Yeah, it was huge.

Mark Shaffer: And Tim, I've got to break in right here just because Jenny, again, I want to give her all the credit for this. She did all the research. She was very, very strict about it. We had him on different vitamins, different minerals, all these things through the doctors we were working with at that time. But this is an area in the family that is so tough for a lot of couples. Jenny and I have been, by the grace of God, we've been on the same page when it comes to treatments. So many families, we see what is, what is the divorce rate? Jenny? Do you remember it?

Dr. Tim Clinton: The burden factor? Yeah. It's like, they're making everybody crazy.

Jenny Shaffer: They don't agree. Like I have friends who's husbands don't want to do a special diet.

Mark Shaffer: We're frantic trying to solve a problem here.

Mark Shaffer: They don't want to spend the money. They're not on the same page with the money. They're not on the same page with the time. They can't afford to have the wife home.

Dr. Tim Clinton: Jenny, you said something very important. I'm going to come back to it. I'm going to come back to you Jerry. Jenny said, it's individually specific. This is not, we don't do sweeping statements here. Each child is unique. The sensitivities are unique. The treatments are very unique. Jerry, let me bring it back to you. Anything else that was you saw that categorically was having impact?

Dr. Jerry Kartzinel: You know, I think that, and again, this goes back to the medicine and if you think of it, these kids are like computers. They got a hard drive and they got a software port. And all of your therapies, your speech therapy, your physical therapy, your occupational therapy or ABA therapy. Those are my software engineers. They're trying to load in proper responses and behaviors. But if the hard drive is broken, then it's going to be a lot slower progress being made. And I think that's what Jenny and Mark were experiencing with these different therapists. When you get the fog out of the child's brain, get that hard drive working, then the therapies start to really catch fire. So another area that I deal with beside taking away, gluten and dairy is making sure that they're sleeping well.

Dr. Jerry Kartzinel: And I might have to add a little melatonin. A lot of these kids have obsessive compulsive behaviors and I can use some natural things, or they have anxiety and I can use things like ashwagandha. We have to use something, unfortunately from a medical point of view. But if we do, why don't we try and use the safest things on earth before we get into the pharmaceuticals? Because if they go see a regular doctor, you're right. They might get put on something like Ritalin or whatever. So there's a lot of answers that we already know in 2018 that can really help our kids function at a much higher level.

Dr. Tim Clinton: We're fighting the clock, you guys, and this is absolutely fascinating. I'm actually liking, bouncing around and it's kind of like The View or something, right? Conversation everywhere. Here's where I want to go in closing. There are no doubt some families out there listening right now, or friends or family members of those who have an autistic child. And it's like, their eyes are opening and there's a sensitivity starting to build here. The word hope, because I'm thinking about Jenny. When I looked over into your eyes, I could see a young mom who was pretty frantic, who was broken, who was terrified, who knew something was wrong. And is going to fight her way through it and still fighting every day. You know what I'm saying? Can you speak some words of hope here for a moment? I mean, you guys are in a different place today, obviously than you were before. God linked you up with Dr. Jerry who by the way is on his own journey. But can you speak some words of hope and encouragement to our listeners?

Jenny Shaffer: I just want to say don't give up. And it's important that you pace yourself. Like I went really, really hard and I did get far, but I broke down after six months of just going hard.

Dr. Tim Clinton: That's that caregiving piece, it's like, you're pouring out and not taking care of yourself.

Jenny Shaffer: When you're up till 3:00 AM, researching online, you've got to pace yourself.

Dr. Tim Clinton: cause you're going to make yourself crazy.

Jenny Shaffer: But every day try to do something for yourself, you know? And whether that's giving yourself extra quiet time or, go on a walk or whatever you can do, it doesn't have to cost money, just make sure that you're pacing yourself. I encourage parents, try everything. The reason we went the route with the diet and all that is because no one's coming on TV saying," This cures autism." So you got to do everything you can within your means and within your power.

Dr. Tim Clinton: Mark

Mark Shaffer: I want to say, boy, I look at my son at age three and I look at him now at age 17. And he is a completely different child. And we had no idea where he would go, what he would do. And now we're looking at him, getting a driver's license. He's at a normal high school all by himself. He's doing it. He's going to seven different classes. He's got two different lockers. He's managing his homework. Although he needs a little bit of help from us, but he doesn't have anyone in the classroom with him. And I am so proud of the work that he put in. I was so proud of my wife and what she's done. The last thing I want to say is the people that God has brought into our lives, Dr. Jerry, of course is one of them that we're so grateful for. But there's other people like he may mention them that we've helped along. People who have helped us. One of Jenny's best friends is Amina and she lives out in Chicago. And we just love her to death because she instructed us.

Mark Shaffer: So like Jerry said, having those mentors. The hope comes from being involved in the community. Yes, you will be isolated by some, but if you get involved in the community, that isolation goes away and you can actually get help and give help

Jenny Shaffer: Keep searching.

Dr. Tim Clinton: Dr. Kartzinel, it's been great to have you on. Jerry, could you give us some closing thoughts too, about hope as you go forward?

Dr. Jerry Kartzinel: Absolutely. You know, I always encourage the parents to grow with this, to make sure that each of their needs are being met. I encourage the family to understand the love languages of the wife and of the husband, and to make sure that we're taking care of the marriage. We're still able to get out on a date night. My mom, when she was with us, she'd come over and watch all the boys and my wife. And I would still be able to go out on a date and have some fun and see a movie. And I think it's really important to keep that marriage strong, keep it vibrant, keep it exciting. And for us guys, you know, mostly not always, but mostly it's the women who are driving the ship. And for us guys, we just have to be able to say three simple little words, "As you wish."

Dr. Jerry Kartzinel: And it goes so well, the women will do anything. Guys, we'll go out and we'll work two jobs if we have to, to make the money. But we just have to make sure that we nurture each other, not to forget the other siblings in the family. My wife would take the other boys out on date night and I'd stay home with Josh or vice versa. This is so hard that it'll either forge your relationship that can never be broken. Or if you don't take care of the marriage relationship, it'll blow apart. And that's why the divorce rate is so high when you have a special needs family. So I've got to keep them together.

Dr. Tim Clinton: It has been such an honor to have all you, the three of you on the program today. I tell you if it's done anything for me, it's made me more tender toward these children and toward families who are raising these kids. You know, there's an old song growing up I used to hear, "What I like about you." You know what? Hey, and you know what it is? We have to think that way. Coy Tomlin, again, friends of our family, the Tomlin family back in Lynchburg. Coy is about 22. I think 23. He calls my son, Zach, his best friend, and we kind of helped adopt him into our family. So when we go to baseball games, Coy comes up and sits with us in a special place and he'll stand up and yell and he'll shake the whole crowd up, "Blue that's that's, that was a strike, blue!"

Dr. Tim Clinton: But you know what? Everybody loves that boy, you know why? There's something special about him and hey, suffer the little children and forbid them not to come unto me for of such is the kingdom of Heaven. God's at work. You know, in closing, I want to encourage you as a family, maybe as a mom or dad go up on YouTube right now. And I want you to type in this phrase, "A Father's Autism Song." Mark actually put this together in honor of his son, and we'll also have a link on our site at drjamesdobson.org, "A father's autism song." It'll touch you. I promise.

Dr. Tim Clinton: Thank you guys for joining us. A real pleasure to have you. Thank you. Our special guests again today have been Mark and Jenny Schaffer and Dr. Jerry Kartzinel, a pediatrician joining us, talking about autism on a fantastic program. If you or somebody you love and you're on that journey, I'd like for you to visit us at our website, drjamesdobson.org for resources, encouragement, hope and help. For Dr. James Dobson's Family Talk, I'm Dr. Tim Clinton. Thanks for listening.

Roger Marsh: Well, that concludes our two day conversation With Mark and Jenny Schaffer with a phone in, from their son's physician, Dr. Jerry Kartzinel here on Family Talk. As you heard, all of our guests today know firsthand, what it's like to raise a child with autism. Like Jenny said on our last program, in part one of this interview, every child with autism is different, but there is support available for families who need it.

Roger Marsh: To learn more about Mark and Jenny Schaffer or Dr. Jerry Kartzinel, or to hear any part of this two day interview that you might've missed, once again, go to our broadcast page at drjamesdobson.org . That's drjamesdobson.org/broadcast. You can also give us a call anytime day or night. We'll be happy to answer any questions you might have about the ministry of Family Talk. We can also recommend resources for you, or just simply pray with you. Our number is (877) 732-6825 that's (877) 732-6825.

Roger Marsh: From all of us here at the Dr. James Dobson Family Institute. Thanks for listening to Family Talk today and every day. I'm Roger Marsh. Join us again. Next time for another edition of Dr. James Dobson's Family Talk.

Announcer: This has been a presentation of the Dr. James Dobson Family Institute.

Dr. Tim Clinton: Hey everyone. This is Dr. Tim Clinton with the James Dobson Family Institute. You want a quick and easy way to listen to Family Talk? We're excited to tell you how you can catch our daily broadcast on Amazon Alexa. That's right, Amazon Alexa. This hands-free smart device allows you to hear myself and Dr. Dobson, while you go around your daily routine. Once you enable the Family Talk skill, say "Alexa, play today's broadcast of Family Talk." It's as effortless as that. Learn how you can set up Family Talk on your Amazon Alexa by visiting drjamesdobson.org/Alexa. That's drjamesdobson.org/Alexa.
Group Created with Sketch.