2004 Interview

In 2004 a good friend of mine was in grad school for counseling. She had an assignment to interview someone with unordinary circumstances. I was honored that she chose me. That was five years ago but the thoughts expressed are still poignant today:





Interview with Gary Paquin,
The Father of Liam, a Child with Autism
Megan Wheeler
Northwest Christian College


Interview with Gary Paquin, the Father of Liam, a Child with Autism


Megan Wheeler (hereafter MW): How do you feel about my conducting such an interview with you regarding your feelings about having a child who is not typically developing?

Gary Paquin (hereafter GP): I feel good about it, because I like when people ask me about it.

MW: You like people to ask you about it?

GP: Yes. I can see people wondering and I always wish that they would just ask me about it. I want to tell them, “He has autism.”

MW: That leads into my next question: how you refer to your child’s disability, and how you prefer others to refer to your child’s disability, if indeed ‘disability’ is a term with which you feel comfortable?

GP: That’s a good question. I refer to his disability in the simplest terms that people can understand. So I say that he has autism, but it’s actually more complicated than that. I don’t personally see him as an autistic child. I see him as a child that has something that gets in the way of interacting normally with the world and that potentially can be lifted at some point. I don’t like the term disability, but it is what it is, and I am not all that invested in making politically correct statements about what something is. So that’s what it should be called. One of the distinctions that I do prefer is that people recognize that Liam has autism, rather than calling him autistic. When people refer to him as autistic, it is as if that’s all he is, and that’s not true.

MW: Would you describe Liam for me?

GP: Well, yes, Liam is a wonderful 3 year-old boy, who is full of curiosity and spirit. He’s funny, he’s smart, he’s everything that I would want in a son. He loves books and music. He has even choreographed some of his own dance moves. He knows what he wants, but has a hard time communicating it to others. He tries hard, gets frustrated, but then, with some help, he figures it out and learns new ways to communicate every day. He’s a hard worker. When it comes time to be on task, he gets down to business. At home Liam has a big room full of fun equipment to help him with his motor skills, and he loves playing and being silly in this room. Liam knows all the letters of the alphabet and all his numbers up to 20. Liam has a personality that undeniably bursts through the veil that attempts to hold him back from the world around him. It is easy to tell that he wants so badly to be a part of this world in the same way that you or I do, and he puts the hours in to get there. I believe he will make it. Liam has a lot to offer the world. He really affects the people around him in a positive way. People can't help but love him.

MW: That’s a wonderful description, Gary. Liam does indeed seem to be a very special boy. What is your level of awareness or consciousness about the discrimination or oppression that Liam faces or that you as parents might face?

GP: I don’t feel right now that he’s at a point where socially he’s discriminated against, although educationally we’ve had some struggles with educators viewing him in a certain way, an inaccurate way, and I assume that will always be something that we will struggle with. I think it’s when he gets older, though, that I worry. Kids are cruel. And you think about when he gets to the age to start dating, are girls going to want to go out with him?

MW: Can you tell me a little about those struggles regarding educators, their inaccurate views of Liam?

GP: Well yes. We’ve really had some amazing people who’ve worked with Liam, and these people have been able to recognize that we, as Liam’s parents, we know our child better than anyone, that we have educated ourselves and continue to educate ourselves about autism and the unique ways in which Liam struggles with autism. Unfortunately, however, we’ve also had educators tell us that we need to accept that his word for dog is “da” and that that’s the best he can do, that essentially he is retarded and that we need to lower our expectations as such. What was the second part of the question?

MW: Are you aware of being treated differently than other parents; are you aware of being looked at or people reacting to you differently when you are out at the grocery store or in a restaurant, for example?

GP: Yes, there’s a little bit of that. You can see that people are aware that your kid’s different. He’s acting differently and sometimes you can see that they don’t know what it is, and you want to just say he has autism. But it’s not something that you can really just talk about, so that can be a little frustrating at times, but you get used to it too. A part of you just says, “well, that’s my son, that’s who he is, and if he acts differently then no one should have a problem unless he’s hurting somebody.” So I really just don’t let myself care about what they think.

MW: I would like to ask about your family’s acceptance or lack of acceptance and how that has affected you?

GP: We don’t feel that most of our family members fully embrace what we’re going through, what we’re dealing with, or the interventions that we are using. We get the support, but I don’t think there’s a level of really trying to understand what’s going on and what we’re going through. That’s a generalization. There are some family members who really do get it and who really are supportive. I think that in general most of our family members mean well but really don’t completely get it.

MW: What about your interventions?

GP: Even though what we are doing is research-based and has been proven to be effective, it’s not part of mainstream medicine, so it’s not validated by the mainstream medical community.

MW: How does it feel to be embracing something that isn’t mainstream? Is that new for you?

GP: Not really. I have always been interested and open in one way or another to alternative forms of treatment. I give validity to anything as long as you get results. So, when mainstream medicine doesn’t offer you anything, and you see that there’s a possibility that something else will help, I see no reason not to try it. If you get results, you keep on and, if you don’t, you move on. That’s the way I see it. If you don’t explore all of your options, you’re missing out on some opportunities.

MW: Do you have family members that believe that Liam does not have autism?

GP: I think that they all believe it now, but it took them time. I think that it was probably different for different family members. There was some element, I think, of denial, and there was some element of “oh, they’re just over reacting; every kid’s different, every kid develops differently; so, he’s not crawling yet, but. . . .”

MW: It sounds like it must have been a very difficult time for you and Angie?

GP: Yes. It’s not only that, but it was the time that you need support the most and you’re not getting it, and I think that they think they are giving it to us. But it’s just frustrating, because you think that they are understanding something, and then something comes up and it becomes very clear that they’re not.

MW: When did you first recognize that your child had autism?

GP: Well, it’s hard to pinpoint exactly. I think the first time I thought it in my head was about at age 10 months. The first time either Angie or I spoke about it was when Liam was about 14 months.

MW: So you had the thoughts for a time before you were able to talk about it?

GP: Yes, we had friends who had babies Liam’s age, so we could always kind of compare, and we knew that Liam was developing differently than other babies. When he was a baby, we would hold him up to look at us, and he would do everything he could to avoid looking into our faces. We later found out that there is just too much information there for a baby with autism to process, that looking into our eyes was simply too much stimulation for him. It was really after his first birthday. We had a party for him, and he was just in his own little world. It was after that, right around there, that we first talked about it openly. His birthday’s in February, and the Christmas before that birthday we were getting photos taken for Christmas cards, and I remember that we were trying to get Liam to look at the camera and he wouldn’t look. You know, most kids will just naturally look where your voice is. If I say Claire’s name, she turns her head immediately. So there were things that kept getting more and more prevalent, and then I was the first one that said, “I think maybe he’s autistic.”

MW: What an intense time that must have been for both of you, when you were deciding whether or not to share those thoughts with one another.

GP: Yes, it was a scary thing to say for the first time. Because at the time we knew nothing about autism except for, you know, Rain Man. We had no idea really what we would be dealing with, and, as far as I knew, autism was what it is, that’s what you got. But I’ve found out that it doesn’t have to be what you’ve got. In some cases it does, and in other cases it doesn’t.

MW: What information did you get at that time from your pediatrician?

GP: He just said you really can’t tell anything until age three, and so basically he said just don’t ignore him. That was his advice, just don’t ignore him.

MW: My goodness!

GP: And, you know, I was stupid. I just thought, well, he’s the expert. Well, it turns out that he’s not the expert. The expert is the parent, if the parents choose to be the expert, and that’s what Angie chooses to be. I’m not the expert Angie is for Liam.

MW: But you’re becoming an expert as well.

GP: I really haven’t put the time in to read the books. I’ve read some books, but not nearly the scope of what Angie reads.

MW: In my experience as a preschool teacher, I have seen that it takes a great deal of courage for parents to get to the point where they are able to accept that their child has a delay. It often takes a great deal of persuasion by the teachers in order to support the parents in that acceptance. I have not seen yet a case in which the parent advocated for their child to be recognized as having autism.

GP: Well, in Angie’s mind, she had no choice, and that’s the way it should be, and she was devastated. We both were, but I was kind of more shut down, and she was breaking down and crying all the time, and it was a hard for me. It makes me sound like a bastard, but I just felt, “I can’t deal with this and your feelings too, so just keep it to yourself.”

MW: I think that that’s a classic response that families have when dealing with any kind of grief or loss, because each person is going through his or her own process of acceptance, the grief that each family member feels can affect other families profoundly and people often respond with an innate need to protect themselves from one another’s grief. From what I have seen in my work with families who have had to accept that their child has a disability, there is a process of grief that is involved, a sort of letting go of the ideal child, a process of facing that loss in order fully to accept this very real child.

GP: Yes, we each saw it differently. It was a tragedy for Angie, and it wasn’t for me. For me, it changed our thoughts about his future and our expectations about what his future will be, but I just saw him as my son. I didn’t see it as a tragedy. But that distinction was hard for her. And her feelings were hard for me. We had a really hard time just being with each other, because we weren’t on the same page.

MW: Can you tell me about that process?

GP: Well, I’m not sure how we resolved it. It was partly, I think, having to accept that we were coming from different places, and I think that I could accept it more readily than she could.

MW: You could accept that you were coming from different places?

GP: She just couldn’t understand how I could not see it as a tragedy, and I don’t really know how that resolved itself or if it resolved itself. I mean it’s not an issue anymore,
but. . . .

MW: Why do you think that Angela needed you to join her in viewing it as a tragedy?

GP: I don’t really know why I didn’t view it that way. I think maybe, that . . . maybe, I’m afraid to see it that way. You know, maybe if I acknowledged that it was a tragedy, it would be too hard for me to deal with it. I never thought of that before, before just now. And maybe deep down I did think of it that way, but I didn’t acknowledge it, and that attitude, if it were me alone, would not have helped Liam. Because Angie did see it that way, it motivated her to seek the information, to educate herself, to find out what we could do to support Liam, to find treatments for him. I would not have done that, you know?

MW: What would you have done?

GP: I probably would just have listened to the doctors, because I would have thought, “well, they know what their talking about.” I mean, eventually maybe I would have networked with somebody and thought maybe there’s something that we can do, you know? But I don’t think I would have put the energy into it that she did, to really find every possible answer and resource.

MW: Do you think that it changed you in any way to have moved from that point of seeing the doctor as expert to realizing that actually you are the parents and so thus you are the experts?

GP: Yes, I think it has. It’s hard to say how, but I think my view sort of changed in a sense that maybe people need to take more responsibility for their own lives. I mean, I’ve always kind of felt that, but maybe it reaffirmed that it’s my life, my responsibility to my child. I can’t always rely on other people to make the right decisions.

MW: Wow! It can be very difficult to lose that comfort level, the comfort that’s provided in trusting in a larger being, whether it be God, or our parents, or our doctors. It can be scary having to recognize that you are the one that holds that place that takes a great deal of courage.

GP: Yes. You know, what if he had downs syndrome? In some ways it would be a hell of a lot easier, because you know what that is. Autism is so enigmatic and there is nothing concrete about it, whereas downs syndrome is what it is, and everybody knows and accepts that. But I would not change Liam for the world. If I had a choice of having a typically developing kid or Liam, there’s no question.

MW: In a way it seems like the fact that Liam has autism makes your bond with him that much more special.

GP: I think it does, because you know he needs me more.

MW: Have you had much interaction with other parents of children with autism?

GP: I have not, but Angie has. We did go to a group which was for parents who had children on the wheat free dairy free diet, and it was great to feel that support, but we are just so busy right now that it’s hard to follow through. Angie has consulted with other parents online. So there is a little networking that goes on, but not a support group. I do think it would be good for us, though, at some point.

MW: What do you think your greatest challenge will be as far as dealing with discrimination as Liam gets older?

GP: I envision that he will probably get picked on and that would be hard for me. So that’s the biggest thing I worry about. We are gong to put him in private school, but I will always feel more protective of him than of Claire, I think. But you never know, because he could make a full recovery and become capable of taking care of himself, his future is so unknown.

MW: If you could be candid with your family, what would you ask of them?

GP: Man—that’s a can of worms. I have never really been able to articulate what I need from them, because it’s such a gray area. I guess that what I would probably ask them would be to accept that what we are doing is what’s best for Liam and to support us 100%, and to ask us all of these questions that you are asking me, that no one ever asks us. I would want them to try and understand about, not only Liam’s condition, but also how it affects us, about how it affects them, about how it affects everyone. I would want them to be more open about it. Each family member is different in terms of his or her level of support, but I don’t really feel that in general we get listened to. I would like them to be able to make an effort to understand where we are coming from.

MW: As your friend and someone who is in the field of educating young children, what advice would you give me about working with parents of children with autism?

GP: I think that it really depends upon the level of involvement parents choose to have with their child. In interacting with parents like us, my advice is to acknowledge that as parents, our input is valid and important, to acknowledge that we are the experts when it comes to our own child. I think that it’s very important to listen to parents. If they are parents who are putting all of their trust in you, it’s very important to help them understand that they need to become the experts, that it is their job to advocate for their child, that what their child is getting at school is going to be a drop in the bucket, and that the education needs to continue at home. Parents need to understand that their interactions with their child are more important, than anything that they learn at school.

MW: The issue of not being listened to, of not being heard, seems to be an issue that has permeated this entire experience for you. It strikes me that this is a key component of all forms of oppression and discrimination: not being allowed a voice.

GP: Yes! That has been a very hard thing for us.

MW: Are there any other feelings that you would like to share?

GP: Well, I do feel that I haven’t lived up to some of my responsibility by not keeping up with all of the information that Angie has kept up with. If something happened to Angie tomorrow, I would be lost. I mean I would know a lot of things—what to do with him, where to go, and what programs to put together for him, you know—but I would have a hard time.

MW: So what does that feel like?

GP: I feel guilty and sort of impotent in a way, you know, like I can’t keep up with her. And I feel like I’m lazy, because I just let her do it, and I just follow her lead. I mean, we make decisions based upon the information she brings in, so it’s not like her making unilateral decisions. But I trust her completely for information and what she wants to do.

MW: Yes, and you work very hard and put in long hours thus enabling Angie to stay home and be there for both Liam and Claire. I think that it is important for you to come to terms with the fact that each of you has an important way of contributing to the relationship and to the family. And it’s so great for Liam to have both of those parental responses.

GP: Well, yes, I know that that’s true. And, you know, it doesn’t mean that I don’t get sad once in a while. I mean, I wish that he were typically developing. I wish that he didn’t have autism, but you know, why wouldn’t I wish that? Part of that wishing is hoping that it will be, sometime in the future. I do a have a lot of hope for him, but sometimes it hits me that he could struggle his whole life with this and not have the kind of life that any parent would want for his kid…

MW: I was wondering about how that must feel to worry about getting behind knowing what you need to know about how to deal with your own child and to believe that you have to consult books in order to keep up about him? And I guess it just makes me a little sad to see that you seem to undervalue what you bring to your relationship with Liam: your love and acceptance of him as a person and the simplicity and purity of that love. I think that that is a huge contribution to his life.

GP: Well, yes, it is huge, and Angie loves him in that same way. I totally think that my relationship with him is as important as Angie’s is, and we have developed a sort of therapy in how we just play with him. Liam and I have certain things that we do. I say, “Liam do you want to touch the ceiling or do you want to have a raspberry on the cheek.” It starts out as a game and becomes a routine. Through play we make those connections. We have this thing that we call poof toss in which I toss him into a big pillow, he loves that. What ever we do with him it’s always about helping him to learn to make those connections.

MW: I have one last question? How do you feel about having gone through this interview with me? Did you have any concerns about it beforehand or any anxiety? Did any issues and feelings come up for you towards me as I interviewed you?

GP: Actually, it was somewhat cathartic for me to be able to talk about it. The first cool thing for me was having someone take enough interest to sit down and to write out some well thought out questions and try to get an understanding not only of Liam, but also of my thoughts on it, my struggles. I have never had a forum or an opportunity to just talk about it, so it’s been great. I really looked forward to this, and I didn’t have any anxiety at all. I was able to be open and honest about my feelings and what we’ve been through, and like I said it was cathartic.

MW: I really appreciate that. You know when I first read my syllabus for this class and saw this assignment, I thought that I would like to interview you and Angela, but then I just wasn’t sure. I didn’t want you to think that that was my focus on your family. It was really a special thing for me to understand a little about your experiences with being a parent of a child with autism and the struggles you and Angela have had. It has also been very special to see you as a father and the bond that you have with Liam. While I have worked with children who have autism and of course their families, I have never had the opportunity to have such a candid discussion. I feel that it will help me in working with families and that in the future I will very much be aware that it is imperative that I make sure that parents feel heard. I really admire how you and Angela as parents have advocated for your son, Liam and I believe that Liam is a very fortunate little boy to have been born into such a caring and supportive family.

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