(editor’s note: This interview was originally published in the SPD Blogger Network monthly newsletter. Each month we feature one of our writers, and this month we interviewed Ryan. He has written several posts for us including Operation Mallrat, Control Freak and others. As part of our focus on fathers, we’re re-posting his interview here.)
Thank you so much for joining us for the interview! Tell us a little about yourself!
My name is Ryan and I’m a graduate of Brookside Nursery School. I am the very proud father of the coolest five year old around, Haydn. I’m a Taurus… I like long walks on the beach. I like to read and write poetry, love to finger paint, and take everything very, very, seriously.
OK, maybe not so much… Just checking to see if you were actually reading this…
I am the oldest of six children, and have over a dozen first cousins. I have spent most of my life around children, and always felt that I would be fairly well prepared when I finally had a child of my own. So, of course, I have a kid unlike any I have ever seen before. I am currently writing a book about my adventures raising Haydn, and I post stories about him in a blog called Haydn’s World. My goals for writing about Haydn are to show a different side of the autism spectrum… hopefully one that will inspire a little thought, and a lot of laughter.
When did you first see the signs of SPD in your son? Which diagnosis came first for him? The Asperger’s diagnosis or the SPD diagnosis?
I first began to notice that Haydn was a little unique when he was around two years old. I have a very large family, lots of brothers and sisters, and lots of kids. When we put all the kids together, Haydn would move himself to the outside of the group, and grab something (usually a lid, or part of a toy) and spin it. Clearly something interesting going on there. He was very verbal. He would ask us for food, drinks, pretty much anything he wanted or needed, but what I did not notice was that he did not ever point to anything. He was using scripted language, as well, not generating his own responses or statements, and upon closer scrutiny I noticed that not only was he using my phrases and expressions, he was even using the same vocal inflection. He hated tight clothing, brightly lit rooms, and certain loud, higher frequency noises, particularly the barking of small dogs. He also started to develop an unusual pre-occupation with fans and light switches, and spinning objects.
When he was three years old he spent a week at the beach with his mother, while I stayed home and worked. He spent most of his time and energy screaming and crying, and developed what was probably the most extreme case of separation anxiety on record. When he wasn’t trying to physically re-join with his Mom, he ran around the house flipping the light switches in each room on and off, over and over and over again. Ignoring this ridiculously obvious sign that something was quite different about our little boy, we sent him to pre-school that fall anyway, where he crashed and burned in spectacular fashion. He cried all day, ran around the room flipping light switches on and off, and lashed out at anyone who tried to help him.
We immediately withdrew him from the pre-school of awful-ness, and sent him to a very small school with very small classes. After Haydn’s second day we met a friend of the owner of the school – The BCBA (head behaviorist) of the largest school district in Bergen County, who was working with another student at the school. She observed Haydn and told us she could help him. We quickly set up weekly sessions with her, and Haydn was introduced to the wonderful world of A.B.A. Thus began Haydn’s impromptu, accidental, early intervention. The two of them immediately began working on his sensory and behavior issues, and by the end of the school year Haydn was sitting in circle time and listening in on sing-a-longs. (both of which were torture a few months earlier).
He met with a developmental pediatrician shortly after his fourth birthday, and he received the diagnosis of Asperger’s Syndrome, with sensory processing disorder (particularly of the auditory variety), and a little pragmatic language disorder thrown in for good measure.
Getting the diagnosis was extremely important to us. I’m sure that hearing the word “autism spectrum disorder,” can be disheartening to many parents, but I don’t believe that it should be. It is my opinion that too many people perceive their child’s classification from the wrong perspective. Words are just that, only words. You can’t get hung up on labels. These labels are the most important tool that we have at our disposal to better help our children. Once you know have a name for something, the fog is lifted and you can clearly see what it is you are dealing with, and start getting help. It’s not as though our children change over night when they are labeled autistic, or classified as having sensory processing disorder. The symptoms are right in front of us, and sometimes getting it spelled out for us is the kick in the pants we need to start acting. The new classification that we received for Haydn was absolutely critical… I like to think of it as his membership card. The card that gets him into the club where he will receive all the services he needs to prepare for the future
You write a lot about your son, and your posts are both humorous and touching. You have your own blog as well at Haydn’s World. When did you start writing and why?
I started writing about Haydn over a year ago because I want to show the “human” side of autism. Too often, it seems, that once a child gets a diagnosis, that diagnosis defines him.
I don’t see “autism” or “Asperger’s Syndrome,” or SPD, when I look at my son. I see Haydn. I like to tell stories and keep things real positive. My son has been dealt a somewhat difficult hand, and has many challenges to overcome. Some kids have more challenges than he does, many have less. It’s very easy to get hung up on the negative. I could very easily make a list of all the things that my son can not do, but where’s the fun in that? You wouldn’t believe some of the things that he CAN do. Every time I read about something that Haydn should not be able to do, he proves me and the experts wrong. Every time. And every time I think I have it all figured out… He throws me a curveball and does something so random and so unpredictable, that I feel like I’m on some kind of twisted game show and everyone is in on the joke but me. Our experiences together are so unique, and sometimes so ridiculous and funny, that I hope that by giving others a little peak into our world, they may look at their own lives a little differently.
You’ve written several wonderful posts for the SPD Blogger Network with more to come. What has been the best part about having your posts on the SPD Blogger Network site? What have you learned from connecting with other parents here?
The best part of getting some posts on the SPD Blogger is simply the exposure to a new community. There is a real positive energy around this little group of parents, and I very happy to be a part of it. All of the parents who have commented have been great. I have had a few parents comment and tell me that my stories made them laugh (my primary goal). A few have even found little tricks in my stories that work with Haydn that they want to try with their own kids (a happy accident… I wish them luck).
This month, we’re trying to feature posts from dads in honor of Father’s Day. What do you think is different about a father’s perspective?
I believe that men and women are wired differently when it comes to raising children. It’s not to say that I love my son any less (which I do not, of course). I think it’s more in our tolerance for what we will allow our children to endure. Where my wife may be more inclined to swoop in and try to save Haydn from a difficult situation and “make it all better,” with a hug and a kiss, I will allow him to face it, stay engaged, and try to work it out. We have a rule concerning sensory difficult situations – “we always beat the room.” That means that we never let the environment dictate the terms of our activity. Even the most difficult and challenging situation will be addressed, challenged, and whenever possible, overcome.
Every thing we do now, is to help ten years down the road, and unfortunately, that means a few tears may have to be spilled along the way. It may be a little trying sometimes, but following this practice has allowed my son to exceed the expectations of his teachers, advisors, parents, and most of all… himself.