A Sensational Dad: A Chat with Erik Linthorst

How would you feel if you knew your child suffered with...something...but didn't know what it was? What if you were able to describe to people what was wrong but there was no word or label that you knew of to say, "Yes! That's it!" And what if your child was given a label but he or she didn't find nicely into the category of that label? What would you do? How would you help them? Personally, I'd fight until someone listened to me so my child would get the help she'd need. And that's exactly what Erik Linthorst did.

Erik and Jennie Linthorst's story is an amazing one. They had a beautiful little boy they named Graham and all seemed perfect. But when their little guy began to show some odd behavior they decided to seek help. The couple was told by therapists that Graham was Autistic but in their hearts, they knew their son wasn't Autistic. He did show some of the signs and behavioral patterns of Autism, however. So...if it wasn't Autism, what was it?

Erin Linthorst filmed their story in a documentary called, "Autistic-Like: Graham's Story." For any parents, caregivers, teachers or others who have been on this road with a child they love, his story may seem familiar to you in some ways. It's frustrating seeing the symptoms but not knowing what exactly is going on and it's heart-wrenching to want to help your child but have no name for what they're suffering with in order to get that help.

Those of us with children like Graham feel the Linthorsts' story in our souls...we've been there....we understand. But they were brave enough to bring that story out for all of us to see so we can finally say, "Yes! There is a name for it; there is support and treatment options; and we aren't alone." Erik was kind enough to chat with me about his family's amazing journey and his film, "Autistic-Like: Graham's Story." I hope you find it as inspirational as I did.

At the end of our interview, be sure to read details on how you can win a copy of "Autistic-Like: Graham's Story."

________________________________

CHYNNA: Erik thank you so much for finding a bit of time to chat with me. I'm sure you've been told this many times but our stories are very similar in that both of our children reached all of the developmental milestones on par or sooner. At what point did you develop that gut feeling that something was truly wrong with Graham? What signs did you see?

ERIK: From very early on, Graham started doing some rather odd, repetitive behaviors. He would crawl back and forth along lines or patterns on the floor. He would spin wheels. So even though he had met his big obvious developmental milestones (crawling, walking) he was increasingly obsessed with these two behaviors. We didn't think there was anything "wrong" with it. But we were frustrated by it. He wouldn't play with toys. He wouldn't play with other kids. It was our pediatrician who first showed concerns about his behaviors. But then she said we shouldn't do anything about it, we should just watch it. Well, as soon as there was the suggestion that it could be a problem, Jennie and I both jumped into action. We weren't going to just watch. We were going to find help.

CHYNNA: That's amazing, Erik, because often parents will do as their physicians instruct them to-even when they aren't 100% sure. It's great that you followed your instincts. You also did a tremendous amount of research on Graham's symptoms...to find answers, or at the very least, have someone say, "Yes! That's it! Here's what you can do..." How was that journey to the "right" assessment and treatment for Graham? What avenues did you go down for your answers?

ERIK: I'm the type of guy who goes nuts if I can understand how something works. So when Graham started having problems with his development, I became kind of obsessed with understanding child development and what was derailing his. Along the way we found several people who seemed to look beyond the labels and really get the mechanics of what was causing Graham problems. When you find those people, you just cling to everything they say, and you would follow them anywhere. Initially I was open to anything, and we tried many things: special diets, different types of therapy, whatever. And then it's about what works. And it's not that hard to figure out if something's working or not.

CHYNNA: Wow, it's nice to see I'm not the only obsessive parent who must understand things! (I took child development, neurology and brain courses to understand my Jaimie!) And your determination in finding something that works-not just sticking with what's recommended, is so inspirational. How were you and your wife, Jennie, feeling during this time? For some families, it binds everyone closer together. In what ways did Graham's experiences do that for you guys?

ERIK: Well, unfortunately, families with children with special needs have an 80% chance of divorce. Fortunately for us, Jennie and I bonded over the experience. It helped both of us re-prioritize and shed some superficiality. But when you have a child with special needs, it's an all day, every day thing. And that's tough. I think what has helped Jennie and me persevere is that we're militant about having time for the two of us - date night, couch time, whatever. If you don't make it a very high priority, then there's the risk of letting the relationship wither while both parents focus on the child.

CHYNNA: SO true, Erik. Couple time is very important. Thank you for saying that. Now, let's talk about your beautiful movie. Congratulations on "Autistic-Like: Graham's Story." Most viewers might think that being both a filmmaker and a proud, first-time Dad would this an easy film to start. Can you describe what inspired you to go from simply recording your son's growing up to creating this phenomenal film?

ERIK: Well, it was a journey. I wouldn't describe it as easy, but it definitely made sense to do. I had some general skills that were helpful. I had been a screenwriter for a while, and had worked on films before, so it wasn't totally foreign. And I felt strongly that I had something important to share that could help other families in a similar situation. It was still a pretty steep learning curve for me. I think the pivotal point when the film went from something I was considering to something I was accomplishing was when I met my producing partner, Jody Becker, a former NPR reporter, who took an interest in our story. She got on board with me to make the film and was a part of every facet of putting the project together. I couldn't have done it without her. That and I had some early financial support from friends and family that allowed me to fund the project. What most people don't realize is that these things are incredible expensive to make. So I was very fortunate.

CHYNNA: Oh, films are expensive to make-especially when you're doing them independently. That's amazing that you got the financial backing to push the project forward. Now, I've been fortunate enough to have seen bits and pieces of the movie. One of my favorite scenes has to be when you climbed into Graham's crib to "see the world from his perspective." That's so powerful, Erik-truly. And it reminded me of how I tried feeling the environment through Jaimie's perspective. It helped me understand her, and her sensory issues, a lot better. How did you getting into Graham's crib help you as a parent and how did that help you find him the help he needed?

ERIK: That was the moment I started trusting my gut. Up to that point, I thought the doctors knew best. And after that moment, I realized that I could help Graham most, not by reading more books, or surfing the Internet for some silver bullet, but by being present with him in his life. I was truly his greatest asset. I actually spent months climbing into his crib every night to hang out with him, bond, play, laugh. I realized that he and I had this connection that was more powerful and healing than anything else I could do. It also taught me that therapy with these kids isn't rocket science - it's intuitive. It also lead me to being interested in the relationship-based therapies like Floortime and Son Rise, because these therapies built on that basic principle of following the child.

CHYNNA: That's beautiful. I highly suggest readers/viewers having Kleenex handy during those scenes. (I need it right now just hearing your description of everything.) Erik, I love the term "Autistic-Like." Can you explain where this came from and how it's helped you to explain Graham's struggles?

ERIK: The first time we heard the term was when we were going through the IEP process. The school said, 'Well, after evaluating Graham, we can't conclude that he has autism. But we're going to describe him as "autistic-like", and that will get him some services.' I didn't really make much of it at the time, but down the road, when Jody and I were brainstorming titles, she called me from her car and said, "I've got it - Autistic-Like". And interestingly, I was kind of lukewarm on it for a while. It seemed kind of clinical to me and not like a movie title. So then Jody suggested "Autistic-Like: Graham's Story", and I liked that more. And then it just kind of grew on both of us because at the end of the day -- it fits.

CHYNNA: It's brilliant-I love it! You know, you and Jennie are models to many of us of how parents can strongly advocate for their children. Do you have any advice to give other parents on what they can do to advocate for their own children? What should we be doing at home, at school and in the world?

ERIK: Well, there's two pieces - advocacy, and therapy. I'm less savvy about advocacy. I guess my only advice is that while it's perfectly fine to lawyer up and take on your school district, Jennie and I tried really hard to keep negotiations with the regional center and the school system constructive. We just showed up prepared, with informed questions and clear requests. But we were lucky. Often we didn't get what we thought Graham needed, and we were able to pay for it. Most families can't, and that's actually who I consider myself an advocate for. I didn't really make a big stink when Graham didn't get the services he needed from the school district. But I made a film to try to help other families get the help their child needs.

But the other way parents can participate is by getting down on the floor with their kids and doing Play Therapy. One of the reasons I recommend the Son Rise Parent Start Up program is that in one week parents are given the basic tools to play with their child in a therapeutic way. Our doctor gave us a half hour tutorial on how to turn bath time, meal time, getting dressed, whatever, into Floortime Therapy. The book "the Child With Special Needs" also has great guidance on doing this. It was amazing how much it helped us participate in Graham's therapy.

CHYNNA: Thank you for your thoughts on advocacy. I was also lucky to have had support in our school district but many parents don't. I hope parents in the latter group use your film to "talk to" educational professionals on what can be done to get children with sensory issues the help they need in school. How is Graham today? Does he have any understanding what you're doing with the film? Has he seen it yet?

ERIK: Graham is 5 ½ and just graduated from pre-k. He will start kindergarten in the fall. He's going great. He's got friends, tells me elaborate stories and just got his training wheels off. He loves to swim, and play with his Thomas set. Academics will be tough for him. He still can't write, and still struggles with pre-reading. He can't catch a ball. But he's social and verbal and happy. We're still doing therapy. Floortime and vision therapy and lots of physical activities like yoga and gymnastics and swimming.

Graham has been aware of the film for about a year. He loves watching it. Loves to see himself and all the home video. I don't think he really gets all of it yet, but we've talked to him pretty openly about it all. He knows what autism is, and he knows several kids in his class that have autism. He knows that when he was younger we weren't sure if he had it, and we got him some help, and now we know he doesn't have it.

CHYNNA: He sounds adorable. And I LOVE hearing you guys do a lot of physical activities-so important for children with sensory struggles (as you probably already know!) Erik, do you have any advice for other parents who are either at the "I know something is wrong but what?" stage or in the assessment/treatment stage?

ERIK: I recommend getting an assessment from a developmental pediatrician and a pediatric occupational therapist with sensory integration training. I recommend reading Stanley Greenspan's "The Child With Special Needs" and Carol Kranowitz's "The Out-of-Sync Child" and Jonathan Levy's "What you Can Do Right Now to Help Your Child With Autism."

CHYNNA: I have both Greenspan's and Kranowitz's books in my own SPD library. Excellent resources. As we come to a close, Erik, please feel free to share anything you'd like to about upcoming events.

ERIK: Our website is a wealth of info--DVDs are available there. As are bonus interview clips with all the experts from the film. Upcoming screenings are listed there as well - we're at film festivals and conferences all over; and under the "news" section people can watch my appearance on Good Morning America Health and the Documentary Channel. On October 10^th weekend, the SPD Foundation is sponsoring a worldwide grass roots event "Sensory Showtime" - which will include 75 simultaneous screenings of "Autistic-Like: Graham's Story" in cities and countries all over the world. If anyone would like to host a screening in their town, they can contact me directly through autisticlike.com.

I'd like to thank Erik for sharing his pearls of wisdom and thoughts with me. And thank you so very much to Erik, his wife, Jennie for being brave enough to share their story with the world. It will make, and has made, a huge difference to many families already. Because of people like the Linthorsts, we aren't islands in the middle of nowhere wondering whether anyone else is going through the same things or even understands. We are forming strong bridges among us and it's making a difference.

____________________________________________

Erik is generously donating a copy of his phenomenal documentary, "Autistic-Like: Graham's Story," as a giveaway prize for one of our readers. All you have to do to enter for a chance to win is leave a comment. I'll be putting this interview up on my blog as well so if you comment here and on my blog, that gives you two chances to win! And if you sign up for our newsletter through Lily Wolf Words, you'll receive another entry. I'll draw for a winner on August 31^st and announce the winner through my blog. (Thank you, Erik!)