Parenting and Asperger’s Syndrome with Derek Volk | EXPLORING DIFFERENT BRAINS Episode 02


 

In this episode, Dr. Reitman speaks with Derek Volk, author of “Chasing The Rabbit,” host of The Derek Volk Show, and father of a son with Asperger’s Syndrome. Derek talks about the arduous task of finding a correct diagnosis, the challenges of someone on the autism spectrum finding employment, and the need for understanding from the general public.

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HACKIE REITMAN, M.D. (HR)

 

Hi this is Hackie Reitman again, talking about neurodiversity. We are so fortunate today to be talking to Derek Volk. He is way up in Maine, he owns a box company, Volk Packaging, he’s got a radio show called The Derek Volk Show, his son’s name is Dylan and he wrote this great book, “Chasing The Rabbit,” welcome Derek.

 

HR

 

Why don’t you introduce yourself to our audience?

 

DEREK VOLK (DV)

 

My name is Derek Volk, and I am the third-generation owner of a corrogated box company in Maine, that is my day job. About a year and a half ago now, I sat down, actually to write a business book, and I heard a voice that said “that’s not the book you’re supposed to write, you’re supposed to write a book about Dylan.” I started typing and I ended up with about 280,000 words, and a lengthy book, all about raising my son Dylan. You can go to ChasingTheRabbit.org to get more about it. It has been an unbelievable experience.

 

HR

 

Tell us about your journey.

 

DV

 

Okay well, my wife and I are highschool sweethearts, and we got married in college. About senior year in college we decided that maybe we would try to have a baby. If it worked out, great, if it didn’t, no big deal. And so, as it turned out, we ended up having our son when we were seniors in college, and everything was great, everything seemed perfectly fine, Dylan seemed to be hitting all of his milestones pretty normally, and then at 2, I came home from work one day and my wife had been watching some other neighborhood kids when their parents would be working, and she said something’s not quite right with Dylan. I said “No, no, he’s fine.” She said “No, something is not quite right, and I don’t know what it is but he doesn’t seem to connect with other kids, they’re playing, he’s not, he doesn’t seem to care whether they’re in the room or not.” And we really had no idea what it was.

 

HR

 

Well let me stop right there for our listeners. Right there at that point, you come home, your wife says something isn’t right, and right there, you

HR

Well let me stop right there for our listeners. Right there at that point, you come home, your wife says something isn’t right, and right there, you have a choice to make. You can be a united front, as a family, or you might become one of the statistics in the autism/asperger’s neurodiversity community, where the divorce rate far exceeds normal population. At that point, you and your wife are together, and thinking “we’re going to do something.” and go from there.

DV

My first initial reaction was denial.. he was our only child and our son, and I just had a hard time thinking there could be anything wrong with him, and Dylan was very unique. He was a unique little boy. When he was two he was into vacuum cleaners, where we would spend hours at local department stores where he would play with vacuum cleaners. When he was three he was a furnace for halloween. So we knew this was kind of a different little boy, but we just chucked it up as he was just really smart. So we were a united front and said okay, we don’t know what this is, but maybe there is and maybe there isn’t something that’s wrong with him. As he started to go to school, the nursery school teacher quickly told us he should be on Ridelin, almost the first teacher conference, “Put him on ridelin”, and he was very little at the point and we were not ready to start putting him on medications, based on a diagnosis of a nursery school teacher. So we started looking when he was a little bit older. When he was five, he went to a day camp and about three weeks into the day camp I got a call, the director of the day camp said “Come pick up your son, he’s a monster.” And it was time for us to stop to say okay, something is not quite right with Dylan, and we needed to figure out what it was. We knew at that point that he was having meltdowns that were much bigger. As you described beautifully in your book, a meltdown and a temper tantrum are two very different things. I called Dylan’s meltdowns temper tantrums on steroids. We knew something was not there, and we then spent several years going on what we call the diagnosis of the month club, where wherever we took Dylan, whatever they specialized in, that’s what he had. So when we took him to the lady that specialized in OCD, that was the root of all of his problems.

HR

Give us a time relationship here. Around what year is this?

DV

Dylan was born in 1991, so it was 1993 when she realized something wasn’t quite right. Now, at that point, there was no Asperger’s diagnosis. We could have taken him anywhere in the world and not gotten that diagnosis. So then, it was 1996 when they called him a monster, and it was 1997 when we started the diagnosis of the month club. So, finally after all these misdiagnoses, we go out and my wife would go to the bookstore and buy a book about whatever the latest diagnosis was, and she’d read it and be like, “Well, I mean that kind of sounds like Dylan, but all of the pieces don’t really fit. Nothing really made sense for us. Then, when he was 8 I actually got a letter in the mail from my brother because this was before everybody Emailed everything, it was actually a little article in the New York Times about a boy from NY City who had memorized the entire New York subway system. He could tell you how to get from any two streets. He had this thing called Asperger’s, which was a form of autism. I was reading it and thought it was really interesting. Dylan, at the time, was really into birds. Everything about birds, to a bizarre degree. So I am reading this little story, and at the end of the story, the last paragraph, it talks about how when he was little, when he was two or three, he was really intro vacuum cleaners, and, of course a light bulb went on and I grabbed the post-it note that I had tossed aside from my brother, and all he wrote on was “Could this be what Dylan has?” And that began our efforts to try to see if the Asperger’s diagnosis fit, which, eventually of course it did.

HR

Tell us about Dylan right now as we speak.

DV

Well Dylan is a success story, and I was told for years that I should write a book. I kept thinking “I will write a book about dylan when I know there is a happy ending,” and, for a long time it did not look like there would be a happy ending to Dylan’s story. There were a lot of times when the options at night were pretty much dead or jail. It looked like those were the only two options where Dylan was going to end up. There were some pretty scary times. Today, Dylan is living in Austin, Texas independently. We, of course help him financially, but he is doing a great job down there, he is driving for Uber, and he is producing a series of online comedy content, and he would kill me if I didn’t mention it, so if you go to Dielawncomedy.com, you can check out all of Dylan’s comedy. Recently he has become a weekly regular on the Lance Bass show, which is one of the guys from NSYNC. Lance has a weekly show talking about pop culture, and Dylan did some comedy for them and they loved him, thought he was great, he went out to LA and while he was in LA talking to them, they realized that Dylan’s special interest, which is common in many people with asperger’s, is music. He is like a music encyclopedia. So now every Thursday at 7 o’clock on series XM 106, he has a top five countdown where he talks about the top five songs of the week, why they’re trending and all of this other stuff. So Dylan is doing great.. he still has days where he feels very overwhelmed, a couple of weeks ago he got fired from about his 32nd job, and called me up and was very upset. But sure enough he went out and got another job as he always does. So he is doing well and he is learning how to deal with life.

HR

Very well said. Tell us, from your point of view, the importance of employment, the importance of a job for an individual?

DV

It’s really important, as most people especially men, we sometimes identify who we are, by our job. Dylan has had some very interesting jobs since he was 16. He is very good at getting jobs. In fact, when he was in a life-skills program in Utah, he actually taught a class for the other students, who, most of which didn’t have any form of autism, on how to get a job because he is so good at getting jobs. He is very personable, and he can fake normal exceptionally well for about 15 to 20 minutes, which is what it takes to get through a job interview. But then when he gets the job, that’s where he runs into problems, like I said I think he is on job 32 and he is 24 years old. But when he has a job, and he has a job that he can be successful at, his whole life is different.. he feels better about himself, he has confidence, he feels that he is contributing to his own life, and to society. It is a big diference. It’s why I’m involved in two organizations here in Maine: The Maine Business Leadership Network and the Pine Tree Society, both organizations trying to help people with disabilities connect with employment here in the state of Maine. Maine is number 50 in people with disabilities in the work force, so we have a lot of work to do here, and I am doing my best to try to help out. I talk about it on my radio show a lot as well.

HR

Why don’t you share with our audience, your experience with your Volk Packaging company, a third generation company in Maine, when you’ve said, “you know what, I’ll have Dylan come and work here.” Tell us about that experience.

DV

We here at Volk Packaging, we have 85 employees with the corrogated box manufacturers I mentioned, and we have a woman in our plant who is deaf, we have a blind gentleman who works in our sales department, and I have at least three people (that I know of) that are on the spectrum that are employed here. It is something where I try to walk the walk as well, and one of the comments that I’ve received, and there is a chapter in the book called, “Why don’t you just hire him?” and it was when Dylan was going through job after job and I would tell people oh Dylan got fired again today. People would know that Dylan was going through tough times and they would say, “why don’t you just hire him? Just put him to work at Volk Packaging” and while that sounds great, #1 there is really nothing much for him to do here. The plant is very loud and very fast-paced, so there is nothing he can do in the plant. Even when he was younger in highschool and he would come here I would put him in the foam division where it is relatively quiet, and he had a really hard time. It’s just still too loud, too much going on, the movement of everything is too fast for him.

HR

Take a moment to explain to our audience, for those who might not be familiar, with the hypersenses that are many times involved with those on the spectrum. Hearing, flashing lights, sight, sound, smell, touch, you name it.

DV

All of those things that you just mentioned, for a lot of people they go out into my plant – we have a gentleman that works one of my machines who has Asperger’s, and he is okay with the noise but there are other things, other sensitivities that he has that don’t impact him here at this employment. So there is no perfect employment for somebody with Asperger’s, because, while Dylan had a really hard time with the noise in the plant, the gentleman didn’t have any problem with the noise at all. But there are other sensitivities he has, where making working in a textile factory would be bad for him.

DV

Dylan would tell people when he was seven that he was going to be an Ornithologist someday, which is a pretty big word for a seven year old to even say, much less know what it is. Then that faded and he was into cars, and I remember we used to take him on weekends to car dealerships and he would spend hours looking at cars. The sales guy came over one time and was talking to Dylan about the cars and he said, “Would you like to be a car salesman someday?” and Dylan said no, and the guy looked at him and Dylan said no, I’m going to own the dealership. So when he went through each one of these stages, we would say okay, what can we do to help him? If this is permanent and cars is his thing, maybe someday we’ll buy a small car lot and let him run it. Maybe we will find a job that is a fit for him that will work. Volk Packaging, unfortunately just was not a good fit for him. In fact, at one point, because he struggles with time management and projects sometimes take a long time for him to do – I would give him a project and I would say “I’m going to pay you for this project. This is what I think this project is worth. If you get it done in three hours, I can give you another project; if you get it done in five hours, I’ll give you another project. But you’re only getting paid based on the projects that I give you, because I can’t pay you by the hour and then have you be – that’s not fair to my other employees.” It’s just not so easy to say that because you want own a company, you can just employ your kid. Dylan has done a great job on his own, taking his special interests in comedy and music, and a lot of his comedy is based on music. He takes songs and makes music parodies and they are hysterical. He is taking his love of music and his love of comedy, and he is trying to make it. It isn’t easy but we have confidence that he will do it.

HR

Every Aspie is different, but let’s talk about one of the big common threads which is the social awkwardness. Now your son is far removed from his support system; tell us about how Dylan is doing socially at this time.

DV

He is doing pretty well. He struggles and the last month or so has been pretty good for me. He actually told us just a few days ago that he has a girlfriend. We are very pleased with that. If you go to our website and go to the speaking page, you can connect to our youtube channel, or you can go to youtube and type in Derek and Dylan Volk, you can go to our youtube channel and you can see some of our presentations, and, in the presentation, Dylan talks about his experience with jobs, and then he talks about his experience with girls, and how similar they are. That he can get a girl, he just can’t keep a girl. It’s very funny, he talks about how, with a job, at least they have some investment, they put you through human resources and drug testing and training; a girl doesn’t have to do any of that. She will cross you right off the list as soon as you make a social error. So he has had a challenging time, socially, both making friends and also trying to get a girlfriend, which is something very important, and he would like to have a girlfriend. That is something that he has always wanted and has just never worked out for more than – you know he says he can’t make it for more than a month. Somewhere in that month, in that first month when you have to wine and dine, and open the car door and do all of the things right, he misses things. And the same things with his jobs, he misses the ambiguity of social interactions. So, while Dylan isn’t, like how some Aspies are happy to just stay in the basement and play video games for 14 hours a day, Dylan wants to be out there. The reason I called the book “Chasing the Rabbit,” is because I always compared Dylan to a greyhound, and the rabbit is normal, and he is running as fast as he can to catch it, but it is always just out of reach, no matter how hard he runs, no matter how fast he exhausts himself, he just can’t catch it, even though he can see it. That creates a lot of challenges socially because he misses things. So, for example, for all of the men listening, if your wife or girlfriend doesn’t seem to be in a very good mood and you say, “Is everything alright?” and she says “it’s fine.” we all know that that does not mean it’s fine. Whereas Dylan might say, “Oh, okay. Everything is fine. Go pick up the remote and start watching TV.” When, you and I know that when your wife says “Fine” in that tone, it is anything but fine, and so Dylan needs more instruction and more, clearer responses from people that he just doesn’t always get.

DV

When Dylan was younger, we would ask how his day at school was, and he would say “I can’t answer that question.” and we would say, well, we just want to know how school was. And he would say things like that’s too broad of a question, do you want me to tell you about every moment in my day? That is the way he interpreted that. I remember one day at camp, my father got annoyed because he asked Dylan how was his day at camp and he basically refused to answer the question, because in his mind, there was no answer to the question. It was so broad, and so that is the kind of overwhelming question, “How was your day at school?” but, luckily Dylan was able to express to us, after asking repeatedly, he finally said “You need to ask me more specific questions if you want me to answer you.” So instead we would ask him things like “What did you do in math class?” or “How was your time in recess?” and give him very specific, time-sensitive questions. I was reading Aspertools this weekend and I kept saying “listen to this” and “listen to this” and I loved the one about when the person is getting picked up from the dentist and says “I’ll pick you up in the morning. Get everything you need.” and they are like “How do I know everything I need?” and it is so perfect because when Dylan and I started traveling for Chasing the Rabbit, we’ve been all over the country now. We’ve spoken in Washington and Memphis, we are doing speaking engagements where we are hopefully going to be in New York City in early November and when we first started going on these trips, he would call me and he’d say I don’t know how to pack, I can’t pack. For three days. I would say “Well just get whatever you need for three days.” which seemed like a logical response, and, here I am, I wrote a book, and that is how I’m answering him. “Just get everything you need.” So, sure enough, he showed up to the first thing and he didn’t have deodorant, he didn’t have a toothbrush, he had one shirt for three days. He would get stressed out before every trip. So finally I said to him, look, you need three pair of underwear, three shirts, and I would text him before his trips and say “make sure you pack this, and relax.” because he talked about the anxiety and stress situations, and I said “Relax. You’re not going on a trip to Siberia or the Moon. Anything you don’t have, we can just go get. If you forget socks, we can just go get you some socks. Don’t stress about it, there is enough in life to stress about.” Which, of course, my wife said “You do realize that means that he can just not pack and you’ll take him shopping.” So I have to be careful about exactly what I say.

HR

As we start to wind down, tell us what do you hope that people get from your book Chasing the Rabbit.

DV

I get asked that question a lot, and I think it is a really good question and am glad when people ask it. I have a number of different people that I hope read the book. The answer is different based on who is reading it. For the parent reading the book, I hope that parent realizes that number one they are not alone. As we all know, autism has a huge range, that’s why we call it a spectrum. But whether your child has autism in the verbal, or autism in the non-verbal, or whether they have another disability like Down Syndrome or whatever it may be, the emotions that I share in the book, as a dad, are very similar to what another father may feel with a child with a different disability. A friend of mine, whose daughter is strongly hearing impaired, said that he had the same emotions raising her. So I hope that they get that. I hope that the educators and counselors get a real inside view of just how hard it is inside the family. One of the counselors that read the book said it’s like we’re walking inside the sacred halls of the Volk household, and that’s what I wanted. I wanted people to feel like they are coming into our lives and this is what it was like, and even my parents, who went through everything with us, my mother called after reading the book, in tears, and said “I didn’t realize how bad it was, and I wish we had done more.” it just is, it’s just life. Everyone can’t adjust their life to what we’re going through. And then for people that don’t have a child on the spectrum or don’t have a child with disabilities, first of all, God bless you, but you have to understand that the rest of us, there by the grace of God are raising Dylan. You could have been raising Dylan as easily as I happen to be raising Dylan. So, the next time you are in that supermarket and that kid is having a meltdown and you think that it is just an undisciplined kid and parent who just does not care about their children’s behavior, keep in mind that that kid could have a neurological disability that you can’t see. I had a friend on FaceBook post something about a kid in a restaurant who was having a temper tantrum and the parents weren’t doing anything, and how terrible the parents were. And below in the news feed, there were all these comments about how parents don’t discipline their kids today and blah blah blah blah blah, and I had to jump in. I said “Did it occur to any of you that maybe that child has a neurological disability that you can’t see, and those parents were just hoping to have a night out as a family and it backfired on them? And they are just trying to get through this meal?” So I actually have these cards that I give away with every book and they are little cards that, on the back, say “You are witnessing autism. Be patient with my child. He/she has autism. What might look like poor parenting is a child with a neurological disorder just trying to get through another day in a world that is often very confusing, fast-paced and overwhelming. Thank you for your understanding.” So what I hope is that these cards, I give away some cards with every book and then I sell them through my facebook page so people can just send me a self-addressed envelope and a couple of bucks and I will send them a card, just to cover the cost of the card and the shipping and everything. I am not looking to make money off of them. What I want, is I want some waitress, who was judgmental to some poor parents who are going through one of those evenings, and we would have handed out these cards by the packet. We had them when Dylan was younger. Maybe the next time that some kid is having a tough time in a restaurant, maybe that waitress will think twice about how she looks at that kid and that parent.

HR

Could you reinforce for our audience where they can listen to your radio show, buy your book, and all of that good stuff?

DV

This is our book, it’s called “Chasing the Rabbit” about a dad’s life raising a son on the spectrum. You can get to it by going to ChasingTheRabbit.org, not .com ChasingTheRabbit.org. You can access our amazon page and our youtube from our website. Also in the books coming out starting next week, there is going to be a book-group discussion guide at the back of the book which I just added to the new version of the book. It is also on my website if you go under the about page. If you have a book club and would like to have a discussion then I would be happy to skype or face time or if you are local I can actually come sit with you. And then my radio show is called the Derek Volk Show. It airs locally on Saturday mornings and it has podcasts. You can also go to DerekVolkShow.com to access this.

HR

I would like to get in Dylan’s comedy music videos

DV

Go to DieLawnComedy.com, or instagram.com/realdielawn and you can subscribe to his youtube channel. There are some very funny videos on there.

HR

Derek Volk thank you very much.

DV

Thanks a lot, I really appreciate being on the show, and anybody that reads the book, I would love to hear your feedback, so please reach out to me after you read it.

HR

We’ve been talking today with Derek Volk. His book is called Chasing the Rabbit and his radio show is the Derek Volk Show.

 

 

One thought on “Parenting and Asperger’s Syndrome with Derek Volk | EXPLORING DIFFERENT BRAINS Episode 02

  • Author Image
    January 25, 2016 at 3:50 pm
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    Great interview. Chasing the Rabbit was a wonderful read.

    Reply

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