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Monday, May 2, 2011

I'm His Dad

by Josh (bio)

N at Disneyland.
My son N was never an easy child. As a baby, he was fussy and didn't eat well. He slept restlessly and woke us up for years at 5 a.m. As a toddler, he seemed easily shook up. At home he did OK, but anything out of our routine was a bit of a nightmare. We have vacation home movies where it seems like he is crying in every shot. Our first born had had colic, so we just assumed that N was a tough baby too, and left it at that.

As N got older, there were elements of his behavior that felt a little different somehow. Every kid goes through phases, but these phases felt longer and more relentless. By the end of N’s first year of pre-school, we knew something was off. He was arguing with other kids, refusing to follow directions and there were a couple of times we had to come to the school and pick him up because his behavior was too much for the teacher to handle.

Late last year, with the help of a great pediatrician, a lot of prayer, and a lot of research (done by my wife who knew in her heart this wasn’t just a phase), N was eventually diagnosed with Asperger’s Syndrome.

Asperger’s Syndrome is on the autism spectrum and it is typically defined as people who have difficulty communicating and socializing with others. They see the world though a literal lens and have trouble understanding nuance, flexibility and adapting. Kids with Asperger’s typically have a singular focus - something they are obsessed with that they spend all their time thinking about. While Asperger’s is more understood now than it was a generation ago, when hearing about it, people still give you a bit of a blank stare. N is not retarded (and really, can we just do away with that word all together?). He can’t count things really fast (like Rainman.) He is not stupid. His intelligence is not developmentally delayed at all.

It has been a tough year. Right now, we are in the process of figuring this all out. As a father, my natural inclination is to want to fix everything. But with Asperger’s there is no magic cure. It is a series of trial and error. My patience has been tested beyond what I knew it could. I have an angry and short-fused temper that I didn’t really know existed. There is a fantastic show on NBC called Parenthood. Among other things, it deals with a couple whose son has just been diagnosed with Asperger’s. In one episode, the dad, when asked how he is doing, says “I am angry all of the time, and then I am mad that I feel angry.” When I heard that, it rang so true that it was scary.

Having a child with a pervasive developmental disorder is not a death sentence. There are so many parents out there with children who are sick or dying, who face challenges far greater than we do. But raising N has presented its own set of difficulties. The only predictable thing about developmental disorders is their unpredictability, so every day is new. There is very little spontaneity in our house as any mention of “if you get your chores done we’ll go get ice cream!” quickly becomes an argument about wanting ice cream NOW! We live a lot in schedules and routine. I have to constantly focus on staying positive and patient, because any negativity or anger quickly sends N on a spiral downward that it tough to pull him out of. We do a lot of tag team parenting.

This post has changed a lot since its inception. When I first wrote it, my editor (my wife) read it and said, “Well, it is good, but I don’t feel like it is honest.” I had sugar coated a lot of things, and tried to make everything sound awesome. Life wasn’t harder - just different! Because when your child has a developmental disorder there is a weird need to look like you’ve got it all under control. “No, it is OK. We are doing GREAT!” And some days that is true. And I believe that someday the under-control days will outnumber the out-of-control days. But other days, you feel one step behind before you even get out of bed, and you do everything you can to hold it together. I owe a lot to my wife, who is amazing and spends a lot more time on the front lines than I do. I couldn’t do it without her.

One thing I do hold onto is something powerful that my friend Rebecca told me. She has multiple special needs kids, and I reached out to her when we were in the process of still trying to figure out what N’s diagnosis was. She told me, “A diagnosis is just a word on a piece of paper. Your son is the same person that he is today and that he will always be. The word doesn’t change that. But you and your wife were given stewardship over him by a loving Heavenly Father. You are the perfect people to help guide him though his life.”

N is an amazing. He is funny and smart and affectionate and my little buddy. If Asperger’s is a piece of the pie that makes N who he is, I can live with that. I'm his dad and I am proud of that. And while I wish sometimes that he could be “easier”, I don’t know that I would want him to be different. We are surrounded by people who love us and love our son and for that we are really lucky. We are full of hope. Just don’t give people the stink-eye when their kid is having a meltdown in the grocery store. You never know.

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