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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Friday, May 29, 2009
Thursday, May 28, 2009
Love And Acceptance
One of the ideas that I had for Liam's website was to blog about our experiences in raising a special child. I haven't really gotten around to it, probably b/c I don't know what to say, don't feel I have the time, etc. But Here I am a 1:00 in the morning, recovering from surgery and fighting a fever for three days now, unable to sleep with a million thoughts running through my head. So....no time like the present.
My hope in doing so is that by opening up about what it is really like to raise a child with a severe disability I can be active in sparking change for myself, for Liam, for other families and their special children, maybe for society. My goal is to share with people who have or have not walked this road with a child an open look at what it is really like so that there is more opportunity to develop a deeper understanding of what it means to have a disability or be the caretaker of someone who is disabled.
I consider myself a fairly private person and for most of Liam's life I feel that I have hidden some of my deepest emotions and greatest moments of triumph from everyone. This leaves me feeling alone, disconnected from the world, like a ghost of a person, a shell of my former self. In doing so, I also feel like I hide Liam maybe because I'm fearful of people judging him or me, maybe because I'm just more comfortable in our little bubble. The most important principal of the Son-Rise Program is the idea of total love and acceptance. It is through love and acceptance that change can occur because this is when you feel most comfortable, open, available, rather than frustrated, stressed, pushing, disappointed. I have come to find this principal to be both the most useful and the most difficult to achieve. I think my journey in achieving total love and acceptance for Liam, all parts of him, and for myself, starts with being more honest, open, authentic. So, mostly, blogging about Liam is for myself, but I hope that it will reach others to educate, inspire, and to feel more connected to people who are different. I also hope that perhaps my words will resonate with another parent out there who may experience the same emotional whirlwind as me, in turn helping us to all feel more connected, loved and accepted.
One of my greatest challenges in being Liam's mom is feeling like I vacilate between viewing him as a "normal child" and seeing his significant deficits. In our everyday life, to me, Liam is just Liam, he's my version of "normal." He's my son, I know him so deeply and so fully, that I almost don't see his disability. Cognitively, I know that he is disabled, but I just experience him as totally normal. Then, out of the blue, I will have an experience that shatters this peaceful little place to be and sends me right to reality where I come face to face with the profoundness of his disability. This is a hard fall and it amazes me that I fall every time. For example, I'll have an occasion to spend time with another similarly aged "typical" child and I will see ALL of the things they can do - play team sports, shower themselves, do math - the list goes on and on. Liam still struggles to follow directions that involve distance (go upstairs and get your pajamas), can't converse, can't write his name or brush his teeth. Most of the time, I totally accept these things about him, I also know that in time, he will improve and be able to be more independent - just on his time frame. However, coming out of my bubble causes me panic, grief, and lots of feelings of inadequacy about the choices that I make for him. "Maybe he'd be better off if we put him in school, maybe he'd be doing better if I just tried harder, did more", and on and on and on. The total opposite of love and acceptance. I begin to push him, get agitated with him, and then feel guilty for my behavior, my feelings - it's not his fault and he doesn't need his own mother judging him.
Recently, I had just such an experience, but it was actually the worst type of fall for me. Because Liam has been homeschooled for nearly 3 years and because I got frustrated with trying to work with the school system, Liam lost his eligibility for special education. Not a big deal, he clearly qualifies, but the process of qualifying him is time consuming and less than a pleasant experience. One of the things I want most in life for Liam is for people to see him as I do (at least most of the time). A whole child, a child with a sense of humor and imagination, who is strong-willed and opinionated, who is affectionate and loving, interested in experiences and the world around him...capable. One of the biggest issues I have had with our special education system is the system's seeming inability to see children with disabilities as children first, label second. I know that there are individuals within the system that do see the child first, but as a system as a whole it just doesn't seem set up to do this. For this "evaluation" we had three "specialists" come to our home to observe Liam. Immediately after letting them in the door, all of my past frustration with the school system came flooding back and I began to regret my decision to do this. It's interesting to see three specialists who work with children fail to interact with a child as though they are a child, not a lab rat. There is no greeting, warm-up, play, make the child feel comfortable - engage the child interact with him. It was immediate observations, taking notes on clipboards, trying to "test" him to see what he can do, and commenting about him as though we weren't there. Liam on this day was playful, engaging, immediately greeted the three "ladies" saying "let's go to the playroom" as he guided them by the hand showing them the way. He was all grins and silliness, anticipating that they had come to play with him. Now I view this as awesome. This is a child who used to show absolutely no awareness if his own mother walked into a room. He never greeted people, and was pretty much content to fling string or rip paper while lying on his back staring at the overhead lights. To me he has come so far and is so open to the world - the world of people. In the report that was later written up about their observations, his behavior was viewed as "too boisterous for the occasion." The majority of the report was similar, pathological language for almost everything he did. Now, some of what they had to say was correct and true, but much of it was not yet. I felt like all of their observations of Liam were made through this lens of autism, and that is what informed their opinions about what they saw. They didn't see a child, with no preconceived ideas to guide them, able to see him as a unique individual. That, coupled with their inability to interact with him as a child, leads to inaccurate assessment that is supposed to inform perfect strangers about what his educational needs are. In our experience, most of the time, these broad generalizations have led to the wrong interventions for Liam. I actually really don't care that much about that right now because Liam is not in school and they don't direct his education. What was really hard was sitting through a meeting with several teachers and specialists, none of whom know Liam, and reading through this report that uses the most negative and pathological language to describe nearly everything about him. Sitting in that meeting I immediately felt that huge sense of regret about being there. I felt the sting of tears coming to my eyes and fought hard not to show my fragility. I felt like storming out of the room, and fought that urge too. Instead I listened to what they had to say, new better than to contradict them as this has tended to be viewed as "denial" and doesn't usually result in any meaningful change. Now, there is a part of me that felt hurt by this report because of its pathologizing nature, especially regarding the things that we see as wonderful things about Liam, but there was also part of me that was hurt because some of it was truth. There was that fall from my bubble where I come face to face with reality in a room full of strangers who don't know my child. I instantly feel the sting of how people must view him. At home, Liam is surrounded by people who know him well, love him deeply, and believe in his capability, even knowing that he is significantly disabled. They see him as a whole child and are eager to share and celebrate his successes and problem solve his challenges. In this setting, it feels protective, safe, loving, a place where Liam is loved and accepted for who he is, not what he can or can't do. When his difficulties are revealed to the world, especially when their viewed differently than how we see him, it feels like being stabbed and that fierce mama protection kicks in hard.
Now this experience hit me hard for a while. I had a hard time letting go of it and began to question my decisions for Liam. It challenged my quest to let love and acceptance be the primary guide in our efforts to help Liam develop. It made me wonder "where is Liam's community? Where does he belong? What would he say he wants if he could tell me? Are we forever going to be cloistered in our home where it is safe from judgment - from facing reality? Is that love and acceptance?" I could go on and on. These are the questions that haunt me, that challenge me, because what I want most for Liam is for him to have a place in this world - to be known, loved, accepted. How best to achieve that, or is achieve the right way to look at it?
After several days of wallowing in my self pity and fear for the future, I logged on to the Son-Rise Program groups that I am part of through facebook. There I experienced such honest love and support for parents experiencing the same thing as me. Such inspiration and dedication to these children as whole beings, to us parents fighting for them. I was moved to tears and filled once again with a sense of conviction that striving for true love and acceptance is the most important principal to live by - Liam deserves that, I deserve that, we all do. I don't know if I'm doing everything I can for him, or the right, the best, the most effective intervention - how can one really know that. Most of the time I do know that I am doing my best and that my intentions for him are true and full of passion. I do know that for him to know that he is deeply loved and accepted, even if stopped making gains, is the greatest gift I can give him and give myself as his mother. Now, if I can just hold on to that knowing.
For any of you who made it through this long post, thank you for listening.
My hope in doing so is that by opening up about what it is really like to raise a child with a severe disability I can be active in sparking change for myself, for Liam, for other families and their special children, maybe for society. My goal is to share with people who have or have not walked this road with a child an open look at what it is really like so that there is more opportunity to develop a deeper understanding of what it means to have a disability or be the caretaker of someone who is disabled.
I consider myself a fairly private person and for most of Liam's life I feel that I have hidden some of my deepest emotions and greatest moments of triumph from everyone. This leaves me feeling alone, disconnected from the world, like a ghost of a person, a shell of my former self. In doing so, I also feel like I hide Liam maybe because I'm fearful of people judging him or me, maybe because I'm just more comfortable in our little bubble. The most important principal of the Son-Rise Program is the idea of total love and acceptance. It is through love and acceptance that change can occur because this is when you feel most comfortable, open, available, rather than frustrated, stressed, pushing, disappointed. I have come to find this principal to be both the most useful and the most difficult to achieve. I think my journey in achieving total love and acceptance for Liam, all parts of him, and for myself, starts with being more honest, open, authentic. So, mostly, blogging about Liam is for myself, but I hope that it will reach others to educate, inspire, and to feel more connected to people who are different. I also hope that perhaps my words will resonate with another parent out there who may experience the same emotional whirlwind as me, in turn helping us to all feel more connected, loved and accepted.
One of my greatest challenges in being Liam's mom is feeling like I vacilate between viewing him as a "normal child" and seeing his significant deficits. In our everyday life, to me, Liam is just Liam, he's my version of "normal." He's my son, I know him so deeply and so fully, that I almost don't see his disability. Cognitively, I know that he is disabled, but I just experience him as totally normal. Then, out of the blue, I will have an experience that shatters this peaceful little place to be and sends me right to reality where I come face to face with the profoundness of his disability. This is a hard fall and it amazes me that I fall every time. For example, I'll have an occasion to spend time with another similarly aged "typical" child and I will see ALL of the things they can do - play team sports, shower themselves, do math - the list goes on and on. Liam still struggles to follow directions that involve distance (go upstairs and get your pajamas), can't converse, can't write his name or brush his teeth. Most of the time, I totally accept these things about him, I also know that in time, he will improve and be able to be more independent - just on his time frame. However, coming out of my bubble causes me panic, grief, and lots of feelings of inadequacy about the choices that I make for him. "Maybe he'd be better off if we put him in school, maybe he'd be doing better if I just tried harder, did more", and on and on and on. The total opposite of love and acceptance. I begin to push him, get agitated with him, and then feel guilty for my behavior, my feelings - it's not his fault and he doesn't need his own mother judging him.
Recently, I had just such an experience, but it was actually the worst type of fall for me. Because Liam has been homeschooled for nearly 3 years and because I got frustrated with trying to work with the school system, Liam lost his eligibility for special education. Not a big deal, he clearly qualifies, but the process of qualifying him is time consuming and less than a pleasant experience. One of the things I want most in life for Liam is for people to see him as I do (at least most of the time). A whole child, a child with a sense of humor and imagination, who is strong-willed and opinionated, who is affectionate and loving, interested in experiences and the world around him...capable. One of the biggest issues I have had with our special education system is the system's seeming inability to see children with disabilities as children first, label second. I know that there are individuals within the system that do see the child first, but as a system as a whole it just doesn't seem set up to do this. For this "evaluation" we had three "specialists" come to our home to observe Liam. Immediately after letting them in the door, all of my past frustration with the school system came flooding back and I began to regret my decision to do this. It's interesting to see three specialists who work with children fail to interact with a child as though they are a child, not a lab rat. There is no greeting, warm-up, play, make the child feel comfortable - engage the child interact with him. It was immediate observations, taking notes on clipboards, trying to "test" him to see what he can do, and commenting about him as though we weren't there. Liam on this day was playful, engaging, immediately greeted the three "ladies" saying "let's go to the playroom" as he guided them by the hand showing them the way. He was all grins and silliness, anticipating that they had come to play with him. Now I view this as awesome. This is a child who used to show absolutely no awareness if his own mother walked into a room. He never greeted people, and was pretty much content to fling string or rip paper while lying on his back staring at the overhead lights. To me he has come so far and is so open to the world - the world of people. In the report that was later written up about their observations, his behavior was viewed as "too boisterous for the occasion." The majority of the report was similar, pathological language for almost everything he did. Now, some of what they had to say was correct and true, but much of it was not yet. I felt like all of their observations of Liam were made through this lens of autism, and that is what informed their opinions about what they saw. They didn't see a child, with no preconceived ideas to guide them, able to see him as a unique individual. That, coupled with their inability to interact with him as a child, leads to inaccurate assessment that is supposed to inform perfect strangers about what his educational needs are. In our experience, most of the time, these broad generalizations have led to the wrong interventions for Liam. I actually really don't care that much about that right now because Liam is not in school and they don't direct his education. What was really hard was sitting through a meeting with several teachers and specialists, none of whom know Liam, and reading through this report that uses the most negative and pathological language to describe nearly everything about him. Sitting in that meeting I immediately felt that huge sense of regret about being there. I felt the sting of tears coming to my eyes and fought hard not to show my fragility. I felt like storming out of the room, and fought that urge too. Instead I listened to what they had to say, new better than to contradict them as this has tended to be viewed as "denial" and doesn't usually result in any meaningful change. Now, there is a part of me that felt hurt by this report because of its pathologizing nature, especially regarding the things that we see as wonderful things about Liam, but there was also part of me that was hurt because some of it was truth. There was that fall from my bubble where I come face to face with reality in a room full of strangers who don't know my child. I instantly feel the sting of how people must view him. At home, Liam is surrounded by people who know him well, love him deeply, and believe in his capability, even knowing that he is significantly disabled. They see him as a whole child and are eager to share and celebrate his successes and problem solve his challenges. In this setting, it feels protective, safe, loving, a place where Liam is loved and accepted for who he is, not what he can or can't do. When his difficulties are revealed to the world, especially when their viewed differently than how we see him, it feels like being stabbed and that fierce mama protection kicks in hard.
Now this experience hit me hard for a while. I had a hard time letting go of it and began to question my decisions for Liam. It challenged my quest to let love and acceptance be the primary guide in our efforts to help Liam develop. It made me wonder "where is Liam's community? Where does he belong? What would he say he wants if he could tell me? Are we forever going to be cloistered in our home where it is safe from judgment - from facing reality? Is that love and acceptance?" I could go on and on. These are the questions that haunt me, that challenge me, because what I want most for Liam is for him to have a place in this world - to be known, loved, accepted. How best to achieve that, or is achieve the right way to look at it?
After several days of wallowing in my self pity and fear for the future, I logged on to the Son-Rise Program groups that I am part of through facebook. There I experienced such honest love and support for parents experiencing the same thing as me. Such inspiration and dedication to these children as whole beings, to us parents fighting for them. I was moved to tears and filled once again with a sense of conviction that striving for true love and acceptance is the most important principal to live by - Liam deserves that, I deserve that, we all do. I don't know if I'm doing everything I can for him, or the right, the best, the most effective intervention - how can one really know that. Most of the time I do know that I am doing my best and that my intentions for him are true and full of passion. I do know that for him to know that he is deeply loved and accepted, even if stopped making gains, is the greatest gift I can give him and give myself as his mother. Now, if I can just hold on to that knowing.
For any of you who made it through this long post, thank you for listening.
Liam And Chester
On Liam’s 6th birthday we decided, for some reason, that it would be a good idea to get him a dog. We got the idea while we were camping at the coast with a group of friends. Many of the other campers brought their dogs. There were about six dogs and Liam really took an interest in them. He seemed to really want to hang out with them and he would just sort of follow them around…at first. The dogs also seemed to take a shine to Liam and you could almost hear them saying after much discussion “Okay, I guess you’re cool. You can hang with us.” The next thing I remember is this pack of six dogs running down the beach after seagulls with a shirtless grinning Liam right in the middle of them. I immediately had visions of Mowgli or some National Inquirer boy raised by wolves, but Angie and I looked at each other thinking the same thing. Later we discovered that we weren’t thinking the same thing at all because I was thinking, “We should get him a dog”. She was thinking, “I hope he doesn’t hurt those dogs”.
On the way back from camping we talked about how Liam really liked those dogs and maybe it would help him to have a dog. Liam was so over dependant on us to entertain him all the time, it felt like a good idea for him to have a companion that could give him attention when we couldn’t. Maybe he would go out in the back yard without needing to have us out there with him all the time if he had a dog to hang out with. Angie reminded me of when we had a dog before we had kids and how it was a hassle with the mess and the shedding and the mess and the barking and the mess. I remembered all those things but completely chose to ignore them because I have this condition where, once I get an idea stuck in my head, I tend to pursue it beyond all reason.
Angie did agree to look into it and we started researching dogs and autism and found out that there are therapeutic dogs for autistic children and that it is very common for autistic kids to bond with dogs and that it can really help them negotiate the social human world. We also found out that these special highly trained dogs cost around $13,500 and that does not include food or a squeaky toy. We also learned that these dogs are really more geared toward kids who are more shut off from the world than Liam was, and the commitment to this dog is that he goes everywhere with the kid; to school, the grocery store, church, the bingo parlor, Chucky Cheese, etc. and is viewed the same as a seeing eye dog and has to be accepted at all those places and that if we don’t have the dog with Liam at all times then we are bad people for not allowing the dog to fulfill its purpose in life. While we really did admire this kind of commitment from a dog, we just could not reciprocate.
I think Angie thought that was the end of it, but not for me (remember my condition?). I still thought that Liam should have a dog but he didn’t need an expensive super dog. He just needed a good all American mutt to pal around with. Angie acquiesced with two conditions: a reasonable sized dog, and a non-shedding breed. Well I could see I had my work cut out for me to find the perfect breed. I Googled “non-shedding reasonable sized dog” and there it was: the Labradoodle. I am going to say that word only once because it is a stupid name for a breed and totally belies the coolness of the dog. What it is is a half Labrador Retriever and half Poodle. It’s hard to conceive of what this dog looks like until you actually see one. It’s a big shaggy mutt looking dog that is not supposed to shed because it is half Poodle and best of all, it doesn’t look at all like a Poodle. This breed can range in size from forty pounds to about seventy-five pounds. When Angie said “reasonable size” I thought she meant that she didn’t want some little yappy ankle-biting dog. I found out later that’s not what she meant at all. The size range was agreeable because Angie was thinking in the forty pound range and I was thinking in the seventy-five pound range; minor details though because we agreed on the breed.
Liam’s birthday was a few weeks away and we had been searching for a good and reasonably priced Labra…half Lab half Poodle. We discovered that most of them were not reasonably priced and that they were in great demand. So, we realized that what we were really looking for was a trendy designer dog. This was a little disconcerting but it didn’t matter at this point because we, and when I say we, I mean I had already made my mind up. I finally found one that was reasonably priced and looked pretty cool from his picture.
We took Liam and Claire to go look at this puppy without giving away that we were thinking about getting a dog. We made up some story that our “friends” dog had puppies and we just want to go say “hi” to them. This dog was eleven weeks old and already forty pounds; about the same size as Liam. He had a cream colored coat and the start of a full beard hanging off his jowls. He walked right up to Liam and began licking his face (probably because Liam had food on his face. Liam always has food on his face). Liam just started laughing and thoroughly enjoying the tongue bath the dog was giving him. We stayed for about twenty minutes. The kids played with the puppy while Angie and I quietly discussed what to do.
“He’s pretty big for a puppy.” She said
“Yeah but look. He and Liam love each other.” I said.
“But he’s already forty pounds.”
“Well Liam will grow too. Besides, look at them.”
Angie reluctantly agreed that this was the dog for Liam. The owner agreed to hold the dog for us until Liam’s birthday when we would present it to him.
On Liam’s birthday all his friends were there. Liam’s friends at the time were all grownups and they were all the therapists who worked with him. These were the people with which he had true bonds and who completely accepted Liam without judgment and many of whom are still close to Liam today. He was ecstatic to have them all there and understood that this was his special day. I had the dog hidden in the basement while the party was going on up stairs. The plan was for me to bring up the dog at just the right moment and present it to him. But the dog let out one big bark and Liam immediately lit up and let out a great big “Whooooooooohoooo!” and started jumping up and down. He could not contain himself. I brought the dog up and Liam just got louder and more boisterous. He would run up to the dog and put his hands on his back and run away and come back and do it again. I thought the dog was going to freak out but the dog was loving it. He was as excited as Liam and was not at all shied by all the commotion. This lasted about fifteen minutes until Liam was able to contain himself enough to let the dog begin licking gluten free cake off his face.
We named the dog Chester after my late grandfather. Chester fit right in with the kids, especially Liam. I say that because Chester and Liam turned out to be almost exactly alike. They are both constantly getting into things, they are both constantly dirty, they both love to play with and in water, they are both hyperactive, they both chew on almost anything, and they are both constantly under foot. In addition to those traits, Chester is not a non-shedder. In fact he sheds like a son of a bitch…literally. It turns out that the non-shedding trait is not a guarantee with the Labra…Poodle/Lab. Also, Chester grew to be eighty-five pounds; a reasonably sized dog in my book, but as stated earlier, an unreasonable size for any dog in Angie’s book.
So, did we accomplish what we thought with Chester? Mostly. I wouldn’t say Liam and Chester are best buddies although Chester tries pretty hard. He is great with both of the kids and they can do anything to him and he just loves the attention. I would say that Liam and Chester have formed a more subtle bond. I remember one summer afternoon looking out the window and seeing Chester lying on the back lawn with Liam lying on his back using Chester as a pillow while looking up at the sky. That was a perfect picture for me. Another time Liam was really upset and collapsed crying on the kitchen floor and Chester came up to Liam and curled his whole body around him, and it really calmed Liam down. When Liam gets upset sometimes he will hit or throw things. Chester gets hit a lot when this happens and he just stands there and takes it. At first I was thinking “Are you stupid? Why don’t you get out of the way?” but after a while I realized that when Liam is upset Chester is always there or he appears there and Liam hits him and Chester lets him. It doesn’t hurt Chester and it got me thinking that maybe Chester can really sense what Liam needs at the time and if Liam needs to hit something Chester is there for him. Maybe I read too much into it. I do believe Chester would do anything to protect Liam, and Claire, and Angie, and me. I also believe that despite the mess and the destruction and the mess and the hyperactivity and the mess, He is a good boy and he makes our lives far richer…and so does Chester.
On the way back from camping we talked about how Liam really liked those dogs and maybe it would help him to have a dog. Liam was so over dependant on us to entertain him all the time, it felt like a good idea for him to have a companion that could give him attention when we couldn’t. Maybe he would go out in the back yard without needing to have us out there with him all the time if he had a dog to hang out with. Angie reminded me of when we had a dog before we had kids and how it was a hassle with the mess and the shedding and the mess and the barking and the mess. I remembered all those things but completely chose to ignore them because I have this condition where, once I get an idea stuck in my head, I tend to pursue it beyond all reason.
Angie did agree to look into it and we started researching dogs and autism and found out that there are therapeutic dogs for autistic children and that it is very common for autistic kids to bond with dogs and that it can really help them negotiate the social human world. We also found out that these special highly trained dogs cost around $13,500 and that does not include food or a squeaky toy. We also learned that these dogs are really more geared toward kids who are more shut off from the world than Liam was, and the commitment to this dog is that he goes everywhere with the kid; to school, the grocery store, church, the bingo parlor, Chucky Cheese, etc. and is viewed the same as a seeing eye dog and has to be accepted at all those places and that if we don’t have the dog with Liam at all times then we are bad people for not allowing the dog to fulfill its purpose in life. While we really did admire this kind of commitment from a dog, we just could not reciprocate.
I think Angie thought that was the end of it, but not for me (remember my condition?). I still thought that Liam should have a dog but he didn’t need an expensive super dog. He just needed a good all American mutt to pal around with. Angie acquiesced with two conditions: a reasonable sized dog, and a non-shedding breed. Well I could see I had my work cut out for me to find the perfect breed. I Googled “non-shedding reasonable sized dog” and there it was: the Labradoodle. I am going to say that word only once because it is a stupid name for a breed and totally belies the coolness of the dog. What it is is a half Labrador Retriever and half Poodle. It’s hard to conceive of what this dog looks like until you actually see one. It’s a big shaggy mutt looking dog that is not supposed to shed because it is half Poodle and best of all, it doesn’t look at all like a Poodle. This breed can range in size from forty pounds to about seventy-five pounds. When Angie said “reasonable size” I thought she meant that she didn’t want some little yappy ankle-biting dog. I found out later that’s not what she meant at all. The size range was agreeable because Angie was thinking in the forty pound range and I was thinking in the seventy-five pound range; minor details though because we agreed on the breed.
Liam’s birthday was a few weeks away and we had been searching for a good and reasonably priced Labra…half Lab half Poodle. We discovered that most of them were not reasonably priced and that they were in great demand. So, we realized that what we were really looking for was a trendy designer dog. This was a little disconcerting but it didn’t matter at this point because we, and when I say we, I mean I had already made my mind up. I finally found one that was reasonably priced and looked pretty cool from his picture.
We took Liam and Claire to go look at this puppy without giving away that we were thinking about getting a dog. We made up some story that our “friends” dog had puppies and we just want to go say “hi” to them. This dog was eleven weeks old and already forty pounds; about the same size as Liam. He had a cream colored coat and the start of a full beard hanging off his jowls. He walked right up to Liam and began licking his face (probably because Liam had food on his face. Liam always has food on his face). Liam just started laughing and thoroughly enjoying the tongue bath the dog was giving him. We stayed for about twenty minutes. The kids played with the puppy while Angie and I quietly discussed what to do.
“He’s pretty big for a puppy.” She said
“Yeah but look. He and Liam love each other.” I said.
“But he’s already forty pounds.”
“Well Liam will grow too. Besides, look at them.”
Angie reluctantly agreed that this was the dog for Liam. The owner agreed to hold the dog for us until Liam’s birthday when we would present it to him.
On Liam’s birthday all his friends were there. Liam’s friends at the time were all grownups and they were all the therapists who worked with him. These were the people with which he had true bonds and who completely accepted Liam without judgment and many of whom are still close to Liam today. He was ecstatic to have them all there and understood that this was his special day. I had the dog hidden in the basement while the party was going on up stairs. The plan was for me to bring up the dog at just the right moment and present it to him. But the dog let out one big bark and Liam immediately lit up and let out a great big “Whooooooooohoooo!” and started jumping up and down. He could not contain himself. I brought the dog up and Liam just got louder and more boisterous. He would run up to the dog and put his hands on his back and run away and come back and do it again. I thought the dog was going to freak out but the dog was loving it. He was as excited as Liam and was not at all shied by all the commotion. This lasted about fifteen minutes until Liam was able to contain himself enough to let the dog begin licking gluten free cake off his face.
We named the dog Chester after my late grandfather. Chester fit right in with the kids, especially Liam. I say that because Chester and Liam turned out to be almost exactly alike. They are both constantly getting into things, they are both constantly dirty, they both love to play with and in water, they are both hyperactive, they both chew on almost anything, and they are both constantly under foot. In addition to those traits, Chester is not a non-shedder. In fact he sheds like a son of a bitch…literally. It turns out that the non-shedding trait is not a guarantee with the Labra…Poodle/Lab. Also, Chester grew to be eighty-five pounds; a reasonably sized dog in my book, but as stated earlier, an unreasonable size for any dog in Angie’s book.
So, did we accomplish what we thought with Chester? Mostly. I wouldn’t say Liam and Chester are best buddies although Chester tries pretty hard. He is great with both of the kids and they can do anything to him and he just loves the attention. I would say that Liam and Chester have formed a more subtle bond. I remember one summer afternoon looking out the window and seeing Chester lying on the back lawn with Liam lying on his back using Chester as a pillow while looking up at the sky. That was a perfect picture for me. Another time Liam was really upset and collapsed crying on the kitchen floor and Chester came up to Liam and curled his whole body around him, and it really calmed Liam down. When Liam gets upset sometimes he will hit or throw things. Chester gets hit a lot when this happens and he just stands there and takes it. At first I was thinking “Are you stupid? Why don’t you get out of the way?” but after a while I realized that when Liam is upset Chester is always there or he appears there and Liam hits him and Chester lets him. It doesn’t hurt Chester and it got me thinking that maybe Chester can really sense what Liam needs at the time and if Liam needs to hit something Chester is there for him. Maybe I read too much into it. I do believe Chester would do anything to protect Liam, and Claire, and Angie, and me. I also believe that despite the mess and the destruction and the mess and the hyperactivity and the mess, He is a good boy and he makes our lives far richer…and so does Chester.
"We need Dave"
My Jeep wouldn't start. "dammit" I thought. "How are we going to do it with one car until I can get it fixed?" I needed my car for work and Angie needed the other one to do whatever it is she does during the day (just kidding honey). We couldn't afford to get the jeep fixed right now. When you have a kid with special needs, the out of pocket expenses force you to live paycheck to paycheck... unless you're Oprah of course. So we decided to see how it would work with one car for a while.
"A while" lasted one day when I said, "screw this. I'll fix it myself." I know a little about fixing cars but it had been a while since I'd been under the hood because "under the hood" usually lead to "under the car" and I hate being under the car, especially in February outside. Well I do have a 3 car garage but to use any one area for a car meant that I would have to rent the largest size dumpster there is and clear out eight years of accumulated garage crap to make room for it. I didn't have that kind of time.
Whenever I have to fix something around the house, be it a vehicle, furnace, drawer, etc., Liam is always right there with me. If he sees the tool belt or hears the words "mow" and "lawn" he immediately realizes that this is the pinnacle of his day. He simply can't get enough of this guy stuff, which makes me so proud that I almost forget that his favorite color is pink.
When I grabbed the tools and opened the hood, Liam climbed up on the bumper to peer in with me. He had a very serious look on his face like he knew exactly what the problem was and how to fix it. If only it were true. "I wonder if it's the starter,” I said.
"Starter." said Liam. Liam is not conversational but he likes to use the words he hears when he can, and "starter" is an easy word for him to say.
"I should call Dave." I said
"Dave" said Liam.
Dave is a good friend of mine whose knowledge of car repair far surpasses mine. After answering a few of Dave's diagnostic questions over the phone, Dave said "You know, I'm just gonna come over there." This is what I was hoping for. Dave only has one tween daughter and a wife who loves him enough to not care what he does with his day (just kidding honey), so he can just pick up and go at a moment's notice...Ahhh freedom; just another word for let's go fix Gary's Jeep.
Dave arrived and in no time he, Liam, and I were putting our heads together. I was holding the socket set, Dave was holding a box end wrench and Liam somehow snuck the hammer from the garage and started whacking the battery with it and saying in a calm and sure voice "starter". By the look on his face it seemed that he was positive this would fix it. I traded Liam a rag for his hammer and he decided that polishing the fender was a better idea.
After Googling symptoms, we had a list of possible interventions. The three of us headed to the auto parts store to buy parts for the three cheapest ways to fix the problem. "Part store" Liam repeated the whole way there. Liam loves auto parts stores, hardware stores, Home Depot, anywhere there are tools or equipment. When we got to the parts store he began to jump around with giddy excitement, whooping and flapping his hands. This always gets looks from passers by that range from puzzled amusement to "What's his problem?" but Liam doesn't care and if he doesn't why should I?
We spent the rest of the day trying the agreed upon fixes and in the end the Jeep still wouldn't start. That meant that tomorrow I would need to try a few other more expensive and labor-intensive interventions. I paid Dave in his usual fee of "drinking some beers with me" thanked him and sent him on his way.
The next morning Liam got me up early. "Fix the truck?" he said.
"Yes, we will fix the truck today." I said
"Dave?"
"No. Just you and me today, buddy."
"Fix the truck."
"Yes, but I need coffee first."
"Coffee"
I was not looking forward to it this day because today involved being under the car. It was cold and wet outside but even if I was spending more money than I wanted to, it was still far less than taking it in to the shop.
Liam and I went back out to the Jeep and opened the hood. We both peered in in a moment of anticipatory silence. Then Liam said, "We need Dave."
"No. We don't need Dave Today." I said.
"We need Dave."
"No buddy, we can do this." I was trying to convince myself as much as Liam.
"Do this." He said.
"That's right man. We can do this."
"Do this."
"Yes, let's do this."
"We need Dave."
The next few excruciatingly frustrating hours were spent with me under the car in impossibly tight positions, bloodying my knuckles, and getting all manner of undercarriage debris in my eyes, while Liam stood on the sidewalk beside the car saying "We need Dave" and "fixing" something else on the Jeep with whatever tool I wasn't using.
In the end, I got the Jeep running again and I did a little victory dance with Liam on the sidewalk saying, "See? We don't need Dave."
"No Dave" Said Liam.
The next day when I came home from work, Liam's therapist asked about what Liam's weekend was like with an amused and concerned look on her face.
"Liam and I fixed the Jeep all weekend." I said.
"Oh" She said. "That might explain why he was saying 'fuck' today."
I don't remember saying that word when I was under the car but I am sure I must have in my frustration zone while I was racking my knuckles and banging my head on the undercarriage.
"And the funny thing is he was using it totally appropriately." She said. "When he dropped his cup or didn't get his way he would just say 'fuck'."
"Well" I said. "I guess that's a good thing right, that he knows how and when to use it. It does come in handy at times."
The next weekend Liam woke me up early again.
"Fix the truck?" He said.
"No buddy, not today. We already fixed it."
"Fuck."
"A while" lasted one day when I said, "screw this. I'll fix it myself." I know a little about fixing cars but it had been a while since I'd been under the hood because "under the hood" usually lead to "under the car" and I hate being under the car, especially in February outside. Well I do have a 3 car garage but to use any one area for a car meant that I would have to rent the largest size dumpster there is and clear out eight years of accumulated garage crap to make room for it. I didn't have that kind of time.
Whenever I have to fix something around the house, be it a vehicle, furnace, drawer, etc., Liam is always right there with me. If he sees the tool belt or hears the words "mow" and "lawn" he immediately realizes that this is the pinnacle of his day. He simply can't get enough of this guy stuff, which makes me so proud that I almost forget that his favorite color is pink.
When I grabbed the tools and opened the hood, Liam climbed up on the bumper to peer in with me. He had a very serious look on his face like he knew exactly what the problem was and how to fix it. If only it were true. "I wonder if it's the starter,” I said.
"Starter." said Liam. Liam is not conversational but he likes to use the words he hears when he can, and "starter" is an easy word for him to say.
"I should call Dave." I said
"Dave" said Liam.
Dave is a good friend of mine whose knowledge of car repair far surpasses mine. After answering a few of Dave's diagnostic questions over the phone, Dave said "You know, I'm just gonna come over there." This is what I was hoping for. Dave only has one tween daughter and a wife who loves him enough to not care what he does with his day (just kidding honey), so he can just pick up and go at a moment's notice...Ahhh freedom; just another word for let's go fix Gary's Jeep.
Dave arrived and in no time he, Liam, and I were putting our heads together. I was holding the socket set, Dave was holding a box end wrench and Liam somehow snuck the hammer from the garage and started whacking the battery with it and saying in a calm and sure voice "starter". By the look on his face it seemed that he was positive this would fix it. I traded Liam a rag for his hammer and he decided that polishing the fender was a better idea.
After Googling symptoms, we had a list of possible interventions. The three of us headed to the auto parts store to buy parts for the three cheapest ways to fix the problem. "Part store" Liam repeated the whole way there. Liam loves auto parts stores, hardware stores, Home Depot, anywhere there are tools or equipment. When we got to the parts store he began to jump around with giddy excitement, whooping and flapping his hands. This always gets looks from passers by that range from puzzled amusement to "What's his problem?" but Liam doesn't care and if he doesn't why should I?
We spent the rest of the day trying the agreed upon fixes and in the end the Jeep still wouldn't start. That meant that tomorrow I would need to try a few other more expensive and labor-intensive interventions. I paid Dave in his usual fee of "drinking some beers with me" thanked him and sent him on his way.
The next morning Liam got me up early. "Fix the truck?" he said.
"Yes, we will fix the truck today." I said
"Dave?"
"No. Just you and me today, buddy."
"Fix the truck."
"Yes, but I need coffee first."
"Coffee"
I was not looking forward to it this day because today involved being under the car. It was cold and wet outside but even if I was spending more money than I wanted to, it was still far less than taking it in to the shop.
Liam and I went back out to the Jeep and opened the hood. We both peered in in a moment of anticipatory silence. Then Liam said, "We need Dave."
"No. We don't need Dave Today." I said.
"We need Dave."
"No buddy, we can do this." I was trying to convince myself as much as Liam.
"Do this." He said.
"That's right man. We can do this."
"Do this."
"Yes, let's do this."
"We need Dave."
The next few excruciatingly frustrating hours were spent with me under the car in impossibly tight positions, bloodying my knuckles, and getting all manner of undercarriage debris in my eyes, while Liam stood on the sidewalk beside the car saying "We need Dave" and "fixing" something else on the Jeep with whatever tool I wasn't using.
In the end, I got the Jeep running again and I did a little victory dance with Liam on the sidewalk saying, "See? We don't need Dave."
"No Dave" Said Liam.
The next day when I came home from work, Liam's therapist asked about what Liam's weekend was like with an amused and concerned look on her face.
"Liam and I fixed the Jeep all weekend." I said.
"Oh" She said. "That might explain why he was saying 'fuck' today."
I don't remember saying that word when I was under the car but I am sure I must have in my frustration zone while I was racking my knuckles and banging my head on the undercarriage.
"And the funny thing is he was using it totally appropriately." She said. "When he dropped his cup or didn't get his way he would just say 'fuck'."
"Well" I said. "I guess that's a good thing right, that he knows how and when to use it. It does come in handy at times."
The next weekend Liam woke me up early again.
"Fix the truck?" He said.
"No buddy, not today. We already fixed it."
"Fuck."
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