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The Big Sister Speaks! (A Guest Post)

I haven’t had any guest posts here before, but what better time to start? My daughter Emily (the one on the left) is eleven, going on twenty-three. I wrote about her and her sister earlier this year, but she topped me with this, which she wrote for school last week. I couldn’t be prouder. It’s worth noting that we didn’t help her on this, except to clean up a few details in her timeline, and fix some minor punctuation. This is all her. And the best part is, she really lives it. Her sister does, too. I’m thinking more and more that the siblings of special needs kids are some of the most amazing people on the planet. -jh


Don’t Judge a Boy by his Diagnosis

By Emily Hague

It was June 2009, and it was that crazy year that my life changed forever. My little brother Jack was three, and I was eight. Everything seemed perfect. School was out, and my friends and I were playing every minute we could together. All of that changed when one day, when mom and dad called me and my little sister, Jenna, inside early. I had no idea that what I would learn would turn my whole world upside down.
     
I remember thinking how frustrating it was that my friends and I were right in the middle of making a perfectly good fairy house when mom and dad had to come in and ruined all the fun! Mom set the stirring spoon down next to the stove and sat down in a chair as Dad opened the door for us and sat us down on the couch. I can’t tell you exactly what was said, mainly because I can’t remember, but it went something like this: “Girls,” my dad said, “things are going to be a little different from now on.” “How so?”I grumbled. I didn’t want anything to change. “Well,” my dad said, “Mom and I, just found out that Jack has autism.” I was about to ask what autism was, when Jenna beat me to it.”What’s Autism?” I think Mom and dad had a hard time explaining this to us since Jenna was only seven and I was eight. They did their best to explain but I still didn’t understand for quite a while. All I knew was that Jack couldn’t think like we did, and that was good enough for me.
 
Three days later we moved to rainy, cold Oregon, and there Jack started going to a school called a Child’s Garden that specialized with kids with autism. I saw him slowly learn and grow, and it became obvious that he wasn’t quite like other children his age. He liked to wander off by himself. He didn’t look you in the eye, and he couldn’t talk. One morning we were excited to show mom and dad that we had taught Jack how to say “Please,” but when we told him to say it the next day, he looked at us as if to say “What are you talking about?” His mind had lost the words again. 

Suddenly it all fit together in my mind. Autism made it hard to communicate with Jack because he couldn’t talk or understand everything. It was like he was trapped in his own world. I asked Dad why Jack would stare out the window and not look us in the eyes. And he said, “He sees things differently than we do.” Little things like a light or a sound that wouldn’t bother me at all, would drive him crazy. When he pulls away into his own little world, that means he can’t cope with the light, or the sound, or whatever else is bothering him. Even now, Jack has a tendency to get attached to random things that we see as every day items (we’re not sure why), such as a certain shirt, or a spatula, or a bean can. If you take one of these things out of the equation, you get a fit.

So eventually we each developed a special way to communicate and connect with him. My personal way was and is to talk directly to him, play directly with him, not act like we’re talking to somebody from another planet. He’s a kid too. We play tickle tag throughout the house, go on walks to the park, and play games on the iPad together, just like normal siblings. Because we are normal siblings.
 

Over the years I’ve seen people look at him in his state of being as if to say,”What the heck?” And I know that they could never really understand who Jack is. As Jack’s sister, I’ve learned not to look at Jack’s outward appearance. I’ve also learned that you need to take time to understand somebody before you form an opinion about them, otherwise you could be making a big mistake. So the old saying’s true: “Never judge a book by its cover.” But in Jack’s case, I say, “Don’t judge a boy by his diagnosis.” I love Jack, Autism and all. He brings joy to my life every day, and I can’t imagine life without him.

What my Autistic Son is Teaching Me About Measuring Results

Here’s an accomplishment: I’m 34, and already on my fourth midlife crisis.

My wife says it has all been one crisis chained together. She might be right. All I know is I want a Harley, or something less practical for a father of five…

What’s my problem? Oh, just the same old midlife-crisisey stuff, but mostly this: I feel like I’m not where I should be. I have yet to finished a book I’ve been trying to write for five years. I do not have a master’s degree. I have never been picked for “So You Think You Can Dance,” and it’s been like, four years since I have won my fantasy football league.

Results are hard to measure. Success looks so relative. For me, every time I accomplish something, I look up to see a dozen other people who accomplished it ten years earlier, with ten times the results. “Oh you’re blogging? And you’ve got almost 400 followers? That’s cute. I’ve got half a million, and a book deal with Harper Collins.

Stupid twenty-five year olds getting their stupid books published…

But then I look at my son. By almost every societal measure, Jack is years behind his peer group. At seven, he doesn’t talk, ride a bike, tie his shoes, or soap himself up. He has no interest in wiffle ball or show-n-tell.

There are some formidable challenges here that can weigh down on the psyche of any parent. Concerns about the future (let alone the present!) can consume me during rough patches, especially during regressions: awful days of stress and meltdowns. Defeats. However those instances do not create a complete picture of Jack’s progress. If I insist on counting defeats, then I must also count victories. My own intellectual integrity demands it.

For example, in the past two years, Jack has learned:

  • How to initiate play with his siblings
  • How to say “mommy” and “daddy”
  • How to go potty by himself (!!!!)
  • How to stall his bedtime by claiming the potty privilege 3 times an evening. (Isn’t that so NORMAL? I love it!)
  • How to find the Netflix app no matter what folder we hide it in

There are more, of course, and most of them aren’t earth shattering discoveries either. Just real, measurable results. And these simple victories seem to fuel him.

Simple victories. I’ve had a few of those recently, too.

  • I learned to whistle two years ago, and now I rock the Andy Griffith theme like a boss. An old boss.
  • I’ve preached some sermons this year that I thought were decent, and one in March that I was actually quite proud of (because I didn’t say “are you with me?” or “does that make sense?” fifteen times…)
  • I am writing often, and some people are even reading what I write.
  • And then, of course, the bigger victories:

    • I bought a house for my family last fall, and we adore it.
    • I got a beautiful girl to marry me fourteen years ago, and she hasn’t left yet.
    • We made five kids, and all of them like me.
    • I came through a long, hard season, and I did not lose my faith that God is good.

    In order to properly measure success in life, we must acknowledge our wins and not just our losses. Then, we must, like Jack, take at least a little satisfaction in those wins.

    It’s a simple lesson, but it’s sturdy enough to help me laugh off my own fake midlife crises. (Yeah, they’re fake. Mostly.) I might not be as far along as I’d like, but I’m a blessed man with an amazing family. And together, we are moving forward.


    * Photo by Sugar Beats Photography

    Fighting Autism with Lame Theology

    Jack sitting in the barnI just finished reading a great post entitled “THE AUTISM DADDY RELIGOUS MANIFESTO.” The anonymous blogger has a nine year old boy with severe autism–worse than my son’s, whose is formidable enough–and was put off by trite religious platitudes that were supposed to make things better. He is not a believer, but he is honest, and I want to stand next to him in addressing this “comforting” statement to autism parents:

    “God never gives you anything you can’t handle.”

    First of all… really? Are we still using that line? I had hoped it would go out of fashion with TestaMints. Because nobody in the history of pain has ever been healed by religious denial. Ever. Read more