Interview: Autism Parent Jean Winegardner of Stimeyland
Jean Winegardner, a.k.a. Stimey, is a mother to three boys, one of whom -- Jack -- has an autism diagnosis. She is empathetic, endlessly entertaining, and a fine writer. Many autism parenting bloggers identify with Jean, and feel about her the way the younger sister felt about Julia Roberts' character in the movie Notting Hill -- that she is destined to be Our Very Best Friend. Though Jean shares herself and her stories at DC Metro Moms Blog and Washington Times Communities as well as on her personal site Stimeyland, I know some of you want more. Read on.
You come across as exceptionally level-headed and positive for someone who mothers three little-ish boys. How do you do it? Does your offline persona match your online one?
What a lovely thing to say. I think that my positivity comes from one of my main philosophies of life: When I have a choice between laughing and crying, I always try to laugh. Although sometimes I do both.
When I look at my kids, I see three such amazing, wonderful little beings, that it is hard to be negative. They're all a lot of fun. Which is not to say that I don't have my moments when I lose it completely. But I think that any mom does.
My offline persona is similar to my online one, with the exception that online, I have the opportunity to edit out or embellish what I want -- something I don't get to do in real life. I'd have to say that writing online has actually really helped me be more comfortable with my true self. I've put myself out there online in an honest way and been accepted, which has helped me be more willing to do that in real life. But, yeah, what you see is kinda what you get. Although I think I'm funnier online than in real life. That's the benefit of writing about your life. You have the chance to publish the comebacks you were too slow to think about as it happened.
Quirky kids like ours often have slightly quirky parents, too. Do you think you fit that description? How? Does it help you identify with your son(s) at all?
Absolutely. I have often wondered where on the spectrum I fall, because I truly believe that I am on it. (But, really, who isn't, I guess.) My mom has told me that Jack reminds her of how I was as a child. I have vivid memories of my ways of being when I was younger (and still today) that are probably diagnosable here in 2010. I think that I have learned to compensate very well (better on some days than others), which gives me a lot of hope for Jack and other kids like him.
I do identify with Jack a lot. I see a lot of me in him, which I hope will help him confide in me and feel good about himself as he gets older. I see a lot of me in my other kids as well, for better or worse. I think that each of my kids are a little spectrum-y, and I think that makes us kind of a cool little unit. My poor husband though. I think the quirky might have skipped a generation in his case.
As a long-time science fiction fan, do you have a different take on Star Trek's constant "Spock and Data learn to be more human!!" story lines now that you parent a child on the autism spectrum?
That's interesting. I can honestly say that I've never really thought about that until right now. (I know. I'm observant.) I haven't really watched Star Trek since I've had kids, but I am definitely a geek. It's interesting, I suppose, that it was not necessarily the presence of emotions that made Spock "more human," but the expression of those emotions. Makes you think. I do know that parenting a child on the spectrum has changed the way I look at most of the world.
You have said that your son's autism/PDD diagnosis (and your littlest's possible PDD label) brought you relief, not devastation. Can you tell us more about that perspective?
I used to be terrified of autism. When my oldest was little, he used to carefully put his trains in the back of his big dump truck and scream and scream when they wouldn't all fit flat, and it scared the hell out of me. When we were interviewing a doula for Jack's birth, one of the women had a son with autism and I remember saying, "I'm sorry." She said, "I'm not. He's a wonderful little guy." Her saying that was so far from my picture of autism that I almost didn't understand it.
When we were first evaluating Jack through Child Find, I was freaked out and definitely scared of the possibility of autism. Although I knew. My "aha" moment was when my husband and I were watching a 60 Minutes story about a teenager with Asperger's. He and I looked at each other and said, "That's Jack." For us, it was a really long process to get from there to his diagnosis. I actually knew long before anyone who worked with him agreed with me. As I was going through the process, a friend of mine told me, "No matter what, he's still Jack. He's still the same kid." And she was right. No label was going to change the fantastic little guy he was.
Jack spent a year in a special education preschool with "experts" who told me "he doesn't present as a child with autism." Not only was I pretty convinced that he did have autism, but I was worried that without the diagnosis that he wouldn't get the services he needed at school without it. Through a study at NIMH, we finally found a doctor who really looked at Jack and gave us our diagnosis. By the time he said the words to us, I had already processed and accepted who Jack was. I was just so happy that someone finally agreed with me and that I could use this new tool, this word, his diagnosis, to get him the help he needed.
I had spent that year "in between" reading and researching and finding others with children like mine or people who had been children like mine. The schisms in the autism community still scared the hell out of me, but autism wasn't so scary anymore.
Since then, I haven't found any expert who doesn't agree that Jack is autistic.
What are some of your favorite things about your wonderful middle son? Do any of them stem from his autism?
I gotta tell you, that kid is awesome! He is a very sensory-seeking, tactile kind of guy, which makes him want to cuddle all the time. I love that about him. He has such a fun little way of looking at the world. A few weeks ago, a pregnant friend of ours came by and Jack rubbed her tummy and told the baby inside, "You are perfect." That's kind of Jack in a nutshell. Super sweet, a little out of nowhere, and wonderful.
He obsesses about things, but the obsessions change over time. But I really love the way he takes his obsessions and uses them creatively in the world around him. For instance, he's really into Super Mario Bros. Wii right now and he will draw intricate worlds that don't actually exist. One day he built an elaborate Mario world with his Legos. Also, he hums the theme song to that video game constantly. He is always humming. For a while it was the Star Wars music. Then it was the Harry Potter music. I love that humming. It's really cute.
I think that one of the wonderful things about kids on the spectrum is that the little steps are huge, which makes them even more wonderful. There was one hot summer day that I had to take all three of my kids on the bus to pick up our car at the mechanic. It was kind of a nightmare. The bus was incredibly crowded, it was about eight hundred degrees, and my littlest guy fell asleep. But Jack had a long, detailed conversation with the guy standing behind us for most of the ride. To be honest, I'm not sure the guy spoke much English, and much of what Jack said was scripted, but it lifted my heart to see him interact like that. Or just yesterday, we went to a birthday party where Jack only knew his brothers and one other child. He played, he interacted, he was quirky, but still part of the gang. It was amazing. With typical kids, I think you're less likely to notice that sort of wonderful bright spot.
How do your three boys get along? Is there parallel play, interactive play, are there full-out brawls? What dynamic does your son with autism bring to the mix?
My guys get along really well. My oldest was only three and a half when my youngest was born, so they are very similar in age and often interested in the same things. I am very fortunate that my oldest son is such a caring and lovely big brother. He helps Jack at school and always wants to help Jack with his homework (which often ends in hurt feelings when Jack doesn't want to play along).
Sam, the oldest, is definitely the leader. He organizes Jack and Quinn to create interactive play. Those two evidently respond to orders well. At least as long as they come from Sam. Their favorite thing to do is some crazy hybrid of dancing and wrestling that they often engage in after dinner.
There is definitely more parallel play unless Sam (or I) organizes them into interactive play.
I feel really lucky that Jack has this sort of constant love and companionship at home. Plus, with an older and younger brother, he will always have a brother in the same school with him. I think that makes us really lucky. Even if he doesn't have as many playdates, his brothers will, and they will include Jack. Then when Jack has playdates, they help run the playdate, so Jack gets modeling on how to interact. (Which is not, I guess, always a great thing. Sometimes my other kids aren't the greatest models.)
It's kind of like we have a constant social skills group going on here.
What message do you try to impart to parents of children with new autism diagnoses? In what direction and to what resources do you point them?
When I meet people who have children with new autism diagnoses, I remember what my friend told me and I pass that on: Your child is still the same wonderful child he was yesterday. I acknowledge that everyone accepts (or doesn't) a diagnosis differently, and I truly believe in live and let live. But through my writing I try to pass along the message that autism isn't as scary as most people think. I truly believe that parenting a special needs child is a cool thing. Yes, it's hard. Yes, there are days when my heart breaks into a thousand pieces. Yes, I worry about Jack's future. But there is so much good in him and other special needs kids. He will have ups and downs and challenges, but every person does. They are just different ups and downs.
I was lucky to see Jonathan Mooney speak about a month ago and a couple of things he said really spoke to me. He reminded us to tell our children, "You're not broken." And he told us that our kids can succeed not in spite of their disabilities, but because of them. I think he's right. Our kids have different challenges, but they also have different gifts.
I tend to tell people that I have found incredible support in the online special needs community. I started at Autism Hub, which, although terrifying because of the controversy and different points of view there, was enlightening for those very reasons. I like that particular starting point because you can find both parents of children with autism and autistic people themselves. I also try to point people to local support groups or some good workshops because I believe that support and knowledge are two of the most important things for special needs parents to have. That is one of the reasons I started my AutMont site.
I also suggest Wrightslaw and their book From Emotions to Advocacy, which I consider a must read for anyone dealing with special education.
What are your goals as a speaker on this summer's BlogHer conference autism panel? Do you have a favorite myth about autism that you'd like to deconstruct?
My goal at BlogHer is the same goal that I always have. I want to share support and I want to let people know that autism isn't as scary as it's made out to be.
If I want Jack to be able to grow up happy and proud of his autistic self, I have to help prepare the world by spreading the word that people with autism are smart, valuable, and important. If someone is unable to communicate like the rest of us, that doesn't mean that that person doesn't have something to say.
Because the topic is Blogging Autism, I am sure I will touch on how the blogosphere, and the special needs blogosphere in particular, has quite literally changed my (and Jack's life). Coincidentally I started blogging shortly before I started to suspect that Jack was autistic. Had I not discovered that special needs community, I know that my journey would be vastly different. I was exposed to the concept of neurodiversity and people who were farther on their journey than I was who helped me get to where I needed to be fairly quickly. Since then, these same people have not only given me vitally crucial moral support, but very specific, real, practical ideas.
I am also very interested in the fact that the online world is a wonderful place for people on the spectrum to interact and make friends without the pressure of instant, face-to-face interaction. I know that I am often more comfortable online than in person. Furthermore, when I didn't know any autistic people in real life, I could find them online, and that was so necessary for me. Now, because of those online relationships, some of those people have become friends that I see in in real life.
Shannon Des Roches Rosa is a BlogHer contributing editor. She writes about parenting her own three kids -- including a middle child with an autism diagnosis -- at www.squidalicious.com. She is looking forward to moderating the BlogHer10 Conference autism panel with its three fabulous speakers: Jean; Pamela Merritt, whose adult brother Bill has autism; and Sharon Da Vanport, an adult with autism whose son is also on the autism spectrum.