Dan Coulter and Julie Campbell Johnson Coulter

Recorded March 2, 2009 Archived March 2, 2009 01:19:01 minutes
0:00 / 0:00
Id: MBX004967


Dan Coulter interviews his wife, Julie, about raising two childern: one with Cystic Fibrosis and one with Asperger syndrome.

Subject Log / Time Code

How Julie felt when she first had her son, Drew, and then her daughter, Jesse.
Dan being the family storyteller during therapy with Jesse.
Julie finding out that Drew had Asperger after he was misdiagnosed.
Drew and Jesse’s interactions growing up and how they relate now as adults.
How Dan and Julie decided to start a small business selling educational videos on Asperger.


  • Dan Coulter
  • Julie Campbell Johnson Coulter

Recording Location

MobileBooth East


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00:07 Date today

00:10 March 2nd

00:13 My name is Dee. Ann Coulter. My age is 58 today's date is March 2nd, 1902 thousand and nine and we're in Winston-Salem, North Carolina and I'll be talking with the Julie Coulter. Who is my wife. I'm Julie Coulter. M56. Today is March 2nd 2009. Where in Winston-Salem, North Carolina, and I am married to Dan Coulter.

00:41 We're going to talk about our family today. So let's start at the beginning and work our way up. We met in 1981. I was working as a television writer producer director for AT&T in Kansas City. I got promoted and transferred to AT&T headquarters in New Jersey and is looking for a house. I had a fun Lively realtor who found me a condo. I was single and I asked her to keep her eyes open for single women I could date. So maybe you can pick the story up from there.

01:07 Well, I got connected with Joan Decker realtor my supervisor in Birmingham, Alabama at South Central Bell had moved to New Jersey and he said oh, I've got a crackerjack realtor Joan deck. So she was showing me condos and it was a time when interest rates were 17% and it was very hard to find an affordable place to live. So I found a condo and she mentioned that she had just sold one to somebody from Kansas City. So we kept going by your condo so she could introduce me and we finally went by your place one night and barged in on you and you would just come home from a trip and

01:48 We're sitting with all your suitcases around you so that was how we met and then several weeks later. I finally moved up there and my mother had a friend who had gone to a funeral the previous year and became reacquainted with a high school friend at the funeral and she was a widow and he was a way to work so they renewed their friendship and they got married. So a friend of my mother said well if Miss Nell black can go to a funeral and get a husband. I think Julie can go to New Jersey and find one. So we met Lucy in August of 81 and then we got married in March of 1982. So we're getting ready to have our 27th anniversary.

02:35 And we started the family. Our son Drew was born in New Jersey. Can you tell us how you felt when he was born? I was just so thrilled. It was just a magical moment. I was just on cloud nine. We moved the number of times while I work for AT&T and we had moved back to Kansas City when I was born. I was 17 months after Drew's birth. Can you tell us how you felt when she was born? I was thrilled that I had a girl so I had a boy and a girl and Jesse had long fingers. So I said right off the bat that she had piano hands and it was just great having two little children and I was fortunate enough to be able to stay home with them and that was just a great experience.

03:35 When Jessie was very young you had some concerns about her health. Can you tell us about that while she was sick all the time? She had colds and ear infections and

03:48 When you know what I was trained in interior design, I didn't know about children. So I had to do a lot of reading and I read doctor Spock and there were there were all the symptoms of cystic fibrosis that she had.

04:06 What were you with your first year check up? I ask the doctor. Do you think she could have cystic fibrosis contagious laughed at me and said don't be silly.

04:18 And I'm so right after that about six months later. We moved back to New Jersey and and I was so mad that doctor I decided I wasn't going to go to pediatrician anymore. I was going to go to a just a general practitioner.

04:32 So that doctor said well, it seems like she's not absorbing nutrients. And so I went to another doctor and test order for allergies and finally found another doctor who called me one day and said, I think we need to do a test.

04:53 For Cystic Fibrosis if you're right.

04:57 So that's it.

04:59 And she was 3

05:02 When we finally got her diagnosis and she was put in the hospital in New York in.

05:07 It was just a nightmare experience and very very difficult. And at the time children with CF their average age was 17.

05:22 So we were just devastated.

05:25 I remember we have added someone I worked with who knew someone who had CF and she was frequently in out of the hospital. I he knew the parents of the daughter who was like 28, and I remember it was particularly devastating when one day we had sometimes written to the hospital with them and you would call to see if we could do the ride with him or visit him in the hospital and can you tell us what happened?

05:50 I don't remember that. Okay. Well what I remember is that the girls are going to the hospital and died.

05:57 And there was

06:00 Okay, I didn't I didn't remember that President cuz I worked with had. I had this friend. I think what helped what have the most was there was a conference several weeks after she was diagnosed that we were able to go to and some of the top people and the cystic fibrosis world where their researchers doctors and from the Cystic Fibrosis Foundation and this doctor said you have to remember that you have a child first.

06:31 Antenna patient and not to treat them like they're our Patient First and that's what we tried to do. And I think that really helped us we we had to incorporate a whole new way of life. We had to do chest physical therapy on her twice a day and in the morning and in the evening, we would lay her in different positions and clap on her chest and her back with are cupped hands and that took about 45 minutes each time and

07:08 It was great. I would usually do the the morning therapy and then you would do the evening therapy and you had a special way of doing it.

07:17 Yes during the therapies. I became the family Storyteller. Jesse had a little bear a little teddy bear that weed named barely there but you kept weather and slept with every night and took to the hospital with her as a comfort and I tried to make you have stories about barely. I would tell us stories to phos children. So while we did the therapy why was doing the therapy I would tell her a story and after a while. I started recording the story. So we still got those stories but both Drew and Jesse were in the stories and they were about barely beer coming through Jessie's closet and taking Drew and Jesse off the magical adventures where they worth would defeat evil wizards mainly by knocking their hats off what takes away their power and just as a clue you can always feeding Evil wizard by stinky and dirty sock under his nose. Dirty sock is killing material for young kids.

08:11 So it's great to hear those cuz you take the lot of them in to hear those recordings now and to hear their little voices. It's just wonderful story. I remember what I was talking about Drew and Jesse would going to this land where Drew is a prince and Jesse was a princess and Jesse on this beautiful dress and then I started to go off on to the store and Jesse said wait, what about the dwes describe the dress in excruciating detail for little boys with a stopped up nose. What about the dog West it was funny a little later on we move back to New Jersey and Drew was in preschool and we got some reports about him. Could you tell us about that Drew? You know, what I wasn't trying to Child Development and Drew sometimes we do things that people would point out but it just went right over my head like at church one time the lady and Sonny's goes to what he doesn't know how to use scissors and

09:11 I had seen the book The hurried child and and I didn't push him to do things. If you didn't want to play with colors and crayons and stuff. I didn't make him do it. So I didn't think much about it, but it's preschool teacher call one day. He was 4 and 1/2 and she said I think he has a learning disability because he died because I thought he was just a smartass or boys in the world and she said really won't keep his shoes on and I thought well, what does she know? Well, she was about my age now. She was probably closer to 60 and it turns out she knew quite a bit. So luckily we were in New Jersey where they have wonderful special ed programs and the local child study team evaluated him and at the time they diagnosed him as communication handicapped and put him in a special ed.

10:05 Kindergarten class self-contained class where he had speech therapy and there were only five children in the class and he began that in February and he went through the entire math book from February to June when school ended and

10:26 So

10:28 Then we move to Atlanta because I was Jessie's medical condition. I just felt like I needed to be closer to my family in in Birmingham. So my parents could come over and help because

10:43 In my mind Jesse was going to be in the hospital a lot and I was going to need help.

10:48 So when we got to Atlanta the school there didn't recognize Drew's diagnosis or his IEP and I just put him in a regular kindergarten class and that began the diagnosis Road for Drew. We took him to several different experts and got many different diagnosis from ADHD to mild autism to OCD just every person we went to said something different. We finally found a wonderful developmental pediatrician who diagnosed him as PDD pervasive developmental delay and

11:32 So we we we just didn't get very good help. They are in school. We did take him for private speech therapy and then finally

11:43 In about I guess early maybe late 1994. I went to a conference and her diet. McCullen speak and she told about this new diagnosis Asperger syndrome. And so when I went back to the doctor, he said

12:02 Yes, I think you might find it that that is Drew and his his Viewpoint was optimistic that he said Drew will never be the life of the party. But he may do bring up things in a laboratory one day so that to me that was optimistic that the Drew had a future.

12:26 Could you tell me a little bit more about how Asperger syndrome affects Drew personalized as a person Drew struggles with social interactions with people? He doesn't understand the normal everyday give-and-take of conversation. He's he's so bright and is very interested in British humor literature comedies. He he would focus on one particular area at the time and this is common with the people with Asperger syndrome to have a very focused special interest and only be able to talk about that special interest when he was little it was Star Wars or or Legos and then it would move to to another interest.

13:18 He he doesn't he takes things literally so he had to be very careful about how you talk to him. Because if you say I'll be there in just a minute. He expects you to be there in one minute. I think it's interesting to that part of his fascination with Star Wars extended to mythology. So he became so enamored of Mythology that he learned all his lessons and more and it was a challenge. Sometimes it's cool because he knew the mythology textbook inside now and we kind of want to take over the class from the teacher which is also common with with Asperger's Syndrome for a second. Could you just kind of hear some of the fears we had about Drew and Jesse and their Futures when they were both young and we relatively new to this diagnosis has we didn't know how long will you would have her medicine was changing and you know, we we just hope for the best and Andrew since his diagnosis evolvd we

14:17 We just didn't know we didn't know what he would be able to do. We didn't know would he be able to go to college, you know, it was very uncertain what he would be able to do but he has done so many things that we didn't think he could do. He he graduated from college. He got a degree in creative writing. He now works at the library. He's writing a book. He's going to school taking accounting. He had a girlfriend briefly he drive. So I think he's he's he's done so many things that we just didn't anticipate he would be able to do and Jesse's help has been so good because we were diligent about doing her therapy and she has kept that up now that she's on her own and her lung function.

15:17 Like a normal person because she works so hard to keep it that way or the things we did which we learn learning about other parents have learned to some other parents have done to was just going to kind of super parent mode doing all sorts of research finding things that could you describe some of the things you did we did to research CF Asperger syndrome in and move forward to go to a lot of conferences. The CF Clinic would generally hold a conference once a year with updates on research and that really helped us to know what was happening with medicine and for Drew I joined parent support groups. I went to try to go to at least one conference every year. I bought books read books and was in parent support groups, and that was very helpful, but I really had to educate myself.

16:12 How do you think having cystic fibrosis has helped shape? Who Jesse is? I think it's made her a very strong determined person. She's focused on what she wants to do. She knows she has to do things in a different way and

16:32 She she organizes her life. She's a very social person and always has a group of people around her wherever she's been in school and

16:47 She's a very caring person but very concerned about the world. She's.

16:58 She's she's just a very talented special person. I'll tell a story about Jesse's determination of when she was in high school. She decided to join the marching band playing the flute. And as a freshman she went out for marching band practice for a month or so during the summer maybe two months with the band. And before the first game during one of the practices. They invited the parents to come and see everybody marching had a marching competition and in the marching competition the leader would stand there and give these instructions and people have to spend turn watch the right part of the field to do All the Right Moves and they had a competition where if you made a wrong move the director pull you out and they wanted to see who the best freshman was who best soccer was the best Junior the best senior will they started the competition with everybody? And before it was over there were two people left. Jesse is a freshman and a senior one senior and just made one small mistake, so

17:58 Came in second, but you'd be. Every freshman every software every Junior and only one senior beat her so she has and playing a wind instrument having cystic fibrosis. I mean that really it helped her lungs. So, you know it it was just a great thing for her. She started playing piano when she was about six and as we moved around we found different piano teacher she's had some wonderful piano teachers and she came to Salem College and audition for a scholarship and she got a piano scholarship. We were living in New Jersey at the time. So when she was a junior in high school, we had gotten a special therapy vest machine to help do her lung therapy, which

18:58 And we didn't have to do the Clapping on her back anymore and she could be independent. That way we know she can move away to college. So she got a scholarship to Salem College with piano and academic and

19:13 I just couldn't let her go. So we move to Winston-Salem with her.

19:20 And

19:22 And began

19:25 Our own business. So it was just great that we could be independent and do that, but she continued with piano at Salem and had a wonderful senior recital and had a double major in international relations as well. Just during college. She decided that she didn't want to go in the music after all but you kept after music because that was for scholarship, but what happens after she left College

19:55 Well her senior year at Salem they helped her find a mentor who's a local lawyer and I think he encouraged her to consider the law. And so she took the L sat and applied to law schools and she got accepted at William & Mary. So she's in the middle of her second year at William & Mary in the law school and is determined to be an Environmental Lawyer.

20:21 And save the world. Yes, since you doing great. She's made log review and we're very happy. Yeah.

20:27 Could you tell us now? Let's talk a little bit Drew again. How has Asperger? Syndrome has kind of helped shape the person who drew is.

20:36 Drew's got such a unique Viewpoint. He continually will consider something will make a comment about a situation that that just amazes me. He he has a very unique viewpoint on the world. He sees things in a different way then then I do and I really appreciate what he contributes that way. He's he's got he has kind of a narrow focus and I think that that's helped him develop his skill as a writer and his ability to think about stories.

21:20 I think it's interesting that his background in mythology has helped him when he was in college, you mentioned to us that he was starting a novel and I thought oh, well, that's kind of nice and then I read the first chapter and I've been reading fantasy novels and science fiction novels since I was a kid and it was really really good. I was really stunned and then really pleased and I'm I'm looking forward to having him finish. And of course right now, he's working on the accounting degree so he can get a job to support himself so we can finish his novel but could you tell us about when he was a child and we thought he couldn't write it all and why well, he had such a hard time with his handwriting actually forming the letters. So I asked his teachers for permission to be his secretary if he had to write so he had to write sentences with his spelling words. He would come up with a beautiful sentence. But by the time he started to actually write it down and for me to let her he would have forgotten the Senate so if I worked as his dad,

22:20 I prefer and that was just great for teachers to let me do that and his his handwriting has improved. And so when he went to college he he could have used a note taker. He didn't want to do that. Now. He has used that service here at the local college, but I think one thing I've learned.

22:46 In in our experience with Drew is

22:52 A lot of kids with special needs develop on a different pace. So if everybody else's child is doing something at age 15 or 16. Our kids may not do that till 19 or 25. We just have to be ready for them to do things on a different timetable. Let's talk about Drew and Jesse together. Could you describe how they interacted growing up and how they interact today? But when they were little Jessie was much more vulnerable than Drew and I would say do y'all want juice and Jesse would say yeah, we went Apple so she would talk for him and

23:33 They they got along really great together and he depends on her now. He really likes for her to go shopping with him to help me buy clothes. And and we use Jesse has a condom who hit she can often say things to Drew that would be difficult for him to listen to coming from us and they they get along great. I restricted their TV when they were little and so when we did therapy we could watch TV, which Drew thought that was great. So a lot of times Jesse we get to choose what we watched and just the other day Drew told me. Yeah, I remember that Jesse always pick that return to Witch Mountain tape and he got so sick of watching it that he told me recently he hid that he had the video tapes.

24:29 I thought Jesse would have to do something else sometime after do was diagnosed while I was working for Bell Laboratories you had an idea about how we could educate through school teachers because he was mainstream classrooms. Could you talk a little bit but that yeah Asperger syndrome was a new diagnosis got in the diagnostic manual in 1994 in a lot of teachers didn't know about it. So I thought if we could just make a video that would explain Asperger's Syndrome just a basic Asperger syndrome 101. Then I could take that into the teachers in the fall and they could watch that video because I know how time is short for teachers and that would just give them an overview of Asperger syndrome and we were so fortunate living in New Jersey at the time that he had some people. I've always, Angels he had some wonderful teachers instructional aides working with him and we interview them and created this V.

25:29 Because at the high school level there could be 12 or 15 teachers working with him every year. So it was a lot of people to explain Asperger's Syndrome to every fall. So we created that video during a vacation I had from work and then another vacation we created a video about preparing for college and work. We finally decided to leave the security of corporate life and take the part time business. We started to sell the videos full time. Could you share what we were thinking that made us take the risk of starting a small business when we get to Children Well, we had talked with several support groups and I was involved in support groups and it was it was kind of a mission for me that we've turned into a business. Just trying to increase awareness of Asperger syndrome weed listen to the advice of people from

26:29 Support groups and they have made suggestions of videos that we should make and we made one for brothers and sisters who have a sibling with autism or Asperger's Syndrome. We've made videos to explain Asperger's Syndrome to classmates because we understand how important it is the classmates understand the special needs of a child in the mainstream the resources to put away to move down here be close to Jesse Andrew Buchan College down here and start a business. The business is done. Well, we produced 10 videos. We have endorsements from experts at Harvard Medical School University recommendations from the school library journal and our two children of narrated several of our videos. Can you describe our business and how we work on a day-to-day basis? Well, we have a website that we sell videos online and we also sell through

27:29 I think about 26 different retailers booksellers educational suppliers and such as Amazon autism Asperger syndrome publishing company, and we sell to schools and we do a lot of consultation with parents parents will call us and I really enjoyed getting to talk to parents and give them advice and I think one thing that helps us is you're such a good writer the articles that we have on our website are free and those have really helped boost people spirits and give them advice at the same time.

28:18 For a two most recent videos, we interviewed members are more than 20 families about relations between brothers and sisters and their siblings who had Asperger's Syndrome or Autism could use some of the key things we learn from those parents. I think one of the basic things that we learned that was so important was that the families who accepted the diagnosis who are not in denial those families were doing well in the community. They were getting support. They were getting support from their friends and family and they were working to improve communication within the family those families were doing so much better the families who were taking time to give individual time to the neurotypical.

29:08 Child in the family those families were doing really well so that the neurotypical child didn't feel left out because Mom and Dad had to spend so much time with the child with special needs. What's your feeling about parents going for counseling? I think counseling is a great thing for parents at it's been really helpful for me A lot of times parents are afraid to ask for help and they don't feel like they can ask their friends or their family and they need to have a place to be able to just unload and vent in a safe place and counseling can really be a great help.

29:51 Just to say a word from my perspective on what it meant to leave the corporate life and work we're working on it was a major change because I was on a Blackberry 24 hours a day and always having to be near a telephone and it was great to be able to come down here at work just as hard or harder but we were working for ourselves. What is working for a Salesman to you? Well, I really like having around schedule. We do tend to work all the time. It's kind of hard to draw that boundary line. But I do like being a being around boss. We have to kind of be the jack-of-all-trades your your Mister it and the writer in the producer in the technical guy and I'm the accounted in the art director in the production assistant and so we have to do a lot but but I really like doing our own thing on most of the center of autism.

30:51 Things that we've done the two approaches we've taken with her videos is to help people with Asperger syndrome or Autism to learn to deal with the world and also to help others understand and support them. You've described the dream you have for people with special needs could tell us a bit about that. Well, I've seen how difficult it is for adults with special needs to get jobs. The unemployment rate is I've heard it described as 75% I just think it would be great if we could have a program through maybe Americorps that would employ adults with special needs because some of them have very specific skills that could be put to Great use and they could be making a contribution to the company. I mean to the country they could be earning a salary they could maybe become independent and less dependent on public assistance. So

31:51 I just feel like we don't we don't do enough to help people with special needs prepare to live independently. We have never fully funded special education in this country. I'm just thrilled that the stimulus package has so much additional money in it for special education. And I just think it's it's better for the long run. If we focus on helping people with special needs become fully functioning and dependent adults mention that we're making this in the year 2009 just after the government passed a big stimulus package to help the economy recover and part of that has some money in it for special ed.

32:38 For you, what's the most rewarding thing about doing the work that we are doing right now?

32:45 Well when I was a kid my dad work for the phone company and we moved around a lot and we lived in New Orleans for a while. And this missionary from Brazil came to our church. And I when I heard him talk I just thought I want to be a missionary. Well that kind of fell by the wayside as I got to be an adult and then all of a sudden I realized well, I do have a mission field Asperger syndrome is my mission field. So it's it's really helped me to feel like I'm doing something to help increase awareness about Asperger syndrome and to help people understand the gifts that people with Asperger Syndrome have and that they could contribute to the world.

33:28 What is it meant to you to move back to Winston-Salem? And what do you enjoy about living here? Well, my parents grew up in Winston-Salem and because my dad works the phone company and we moved around so much. I always felt like Winston-Salem was home and I used to come here and spend the Summer staying at my grandparents house is I would stay a week at 1 grandparents house and then go to the other grandparents house for a week. And so I just feel like I've come home.

34:00 You talked about talking with parents. One of the parents that I remember the most was the parent in New Jersey who had a son whose class. I think we entire school was in the auditorium and there was a psychologist who showed one of our videos about Asperger syndrome awareness and the mother said after that just made such a tremendous difference in her son's life. He had his clothes before the other kids just knew it was weird. He was teased. He was Amino harassed and after that kids came up to him apologized asked him to sit with him at lunch ask them to play with him on the playground. She said he wasn't coordinated. This was really, you know, he was playing a game. He wasn't playing it very well that you said that really made a tremendous difference in his life. And I think for me one of the things about our business is

34:55 You can have a basic faith in people. Not everybody is going to be good to kids with disabilities if they know about it, but many people are and if you give people a chance and help them understand and don't be afraid they're going to feel worse about the child if they know the diagnosis generally, they're more compassionate if they know there's a reason for the behaviors. So that's what's been an awful lot to me. Is there anything else today you like this year?

35:23 No, I just feel fortunate that I've had these two wonderful children that I've been able to that. I was able to stay home with them while they were younger. I think it would have been very hard to go to work everyday and distill take care of these kids. So I'm very appreciative of the fact that you had a great job and that I could stay home when they were young and help them and you're a wonderful wife and mother. Thank you.

35:54 Can you talk a little bit about your relationship?

35:59 But like how you've grown and how you've changed together.

36:04 Well, I'll start off there. I was delighted to get married in the first place and I just found that the difficulties with the kids did caused us problems. I mean, there's an 80% divorce rate among people parents of children with autism and Asperger Center. We certainly had our share but we always came through it and actually got closer because of it. We're enjoying life now. I think I'm most stressful. Was when we were in New Jersey and I was working all the time and you had the burden of dealing with the kids but things to me or are so much better now that we're able to be together and doing something we love for you. It's it's really hard as parents because you your you just have so little time and you really have to put on your calendar that we're going to go out on a date on this night and have this time together. I think that's really important for parents of kids with special needs and we we did that.

37:04 Occasionally then as the kids got older we could go and do things on her own but it's been difficult counting on that was tremendously helpful and we didn't mean to make any apologies the better. We had two kids with special needs and tremendous dresses at home and at work and being and being involved in a supportive church has always been helpful to me.

37:33 And I would say the right now things are it's really nice. I mean, I work everyday and I can look up and I see my wife said he grew from me while I'm editing you're doing the bookkeeping and working on the content things like that. And it's fun to go out and shoot together. It is very different because when I work for AT&T, for example, I had a crew of a camera lighting guy and an engineer and a gaffer and audio man. And now it's you and me and sometimes we hired a few people but the technology has made that better but more more accessible, but it is great to work with your wife if you love your wife.

38:12 You have to learn to work together that that that's been a learning experience.

38:25 Device, sir things that you've learned from them. I have learned a lot from both of our kids for Drew. He's had to work twice as hard to get half as much and he's found ways to excel in in school and he's overcome some of the social deficits. He has a group of guys that get together every week. So he's got a group of friends lot of people with Asperger syndrome don't have any social contacts or have very big difficulty with social contacts. So I just told you I'm proud of him and I'd say the same thing to Jesse, you know, they're both my heroes Jessie because nothing she wants to do she will let nothing stand in your way. If she wants to do something to finds a way. She's very reasonable about it, but she's determined and she's so bright that you just find a way to make it happen. And I think she will save the world.

39:14 They are there just such bright spots and I think they're each going to make a contribution to the world and I'm so proud of both of them.