Families First Article

Several people have asked about my recent article published in Families First Monthly, a Northwest Michigan Newspaper. So I decided to post it here, hopefully it will enlighten you to better empathise with an autistic family you may know.

The lows are low and the highs are high… our journey thus far.

confusion

I remember a time when I thought it was cute. I had always been committed to being the type of parent that celebrated my children’s uniqueness. So when Gideon began some “unusual” behavior, Noel and I thought it was wonderful and hilarious. I could certainly relate to any child who felt a strong desire to do anything outside of the norm. In fact I was quite proud of the fact that Gideon was different. Even when he began ignoring us, I just figured that he had inherited my ability to block out the world around me (a trait my wife considers more of a curse than a gift).

But after this persisted for several months and the behavior became more extreme, we started to wonder if something was wrong.

Gideon almost never responded to us calling his name, and at nearly two years old, he still had no words or any verbal communication at all (besides crying). We tried to avoid the thought, but we began to wonder if our child might be deaf. I’ll never forget the day Noel came home sobbing following Gideon’s appointment with the audiologist. It was assumed from his hearing test that Gideon was practically deaf (or so we thought), and it was devastating for Noel to find out that her perfect little boy would have any sort of disability.

denial

It still baffles me how none of his doctors or hearing specialists at the time even suggested that Gideon may be autistic. Maybe they were scared or just did not want to do the “dirty work” of alerting us to obvious warning signs. Sometimes I wonder if this sort of “it’s not my job” mentality of our medical professionals adds to the denial that parents experience when facing the idea of children’s disabilities.

It is difficult for me as I watch my youngest son Rivers approach his second birthday. Because he is such a vibrant and expressive and social boy and it brings back memories of really how far gone Gideon was at that age and how ignorant and helpless we were to do anything about it.

By G’s second birthday he had tubes in his ears and his chronic ear infections (a common ailment among autistic children which I believe points to some biophysical connection) seemed to have cleared up, but it was quite obvious that there was something more serious going on. Even though it was obvious at this point that he was able to hear, he still failed to respond to any kind of verbal communication, had no words of his own, did not even babble in gibberish like Rivers does now, and he had transformed from a silly, smiling, giggling angel into an obviously distressed individual who spent half his day standing on his head and the other half crying inconsolably.

Within a couple weeks, he was officially “diagnosed” as autistic.

For a split second I experienced the denial that is such a powerful, evil force that manipulates people into thinking that this is all just a mistake. But a split second was all I could allow.

My family was nearly full-blown into the denial stage and I was happy that they had that luxury. I kept hearing things like “he’s going to be fine” or “maybe you should get a second opinion” or “he is so beautiful and such a happy kid” or “I’ve never seen him rocking or stacking blocks” or “Einstein didn’t talk ‘til he was four” and more of the comments that supportive family members are supposed to say in an attempt to make you feel better. Little do they know that such comments are just fuel for denial’s fiery darts. For Noel and I to fall prey would have been crippling to Gideon. He needed us. He needed us to be brave. He needed us to focus. He needed us to take hold of the selflessness that only comes by the grace of God and charge ahead. He needed us to escape our world and invade his with one mission in mind. Rescue.

education

Noel and I are blessed with a good level of intelligence. We are not geniuses or anything, but we can think critically, solve problems, educate ourselves and make decisions based on logic, viable data, experience, gut instincts, and faith. So when faced with this problem, we began the steps to solve it.

We would have been lost without the internet.

It would probably be an exaggeration to call her an expert, but within months Noel had probably absorbed the equivalent of a masters degree’s worth of information on autism. She still had a long way to go in learning therapy techniques, intervention methods, etc., but when it came to a knowledge of what was known about autism—the types of studies being done, philosophy of treatments, and the overall picture, she had an edge that allowed her to take the somewhat biased opinions of specialists, authors and therapists with a grain of salt and try to utilize the best parts of all these options as we began our rescue mission.

What our education really revealed though, is that no one knows much about autism. There is very little awareness, few studies being done, and the research being done now is in such infancy that it seems like it will be a long time before any real conclusive discoveries are made.

This is unsettling news considering Autism Spectrum Disorder is reaching epidemic status in the U.S.

false hope

Around this time we were able to meet individuals, both in person and online—mostly moms who seemed to be the most insightful when it came to raising autistic children—who gave us a great support network and directed us to some inspirational reading like Catherine Maurice’s Let Me Hear Your Voice, which chronicles her use of the behavioral intervention (ABA) model to integrate her children into a typical classroom and Karyn Seroussi’s story of how an alternative diet changed her son practically overnight.

These stories are meant to give hope and did for a short time, but soon into the reading I realized that I had to stop. I was setting myself up for great discouragement. Hearing these people’s stories (and knowing my own limitations) made me feel like my kid didn’t stand a chance.

We did not have Maurice’s resources to hire a full-time ABA therapist (not to mention we found only one certified therapist in all of northwest Michigan), and although changing Gideon’s diet has been extremely good for him, it was no miracle cure.

We had to get realistic, and the real story is that it takes work. The real story is that some moms work for decades and never hear their child speak. The real story is that your kid may never be all that you had imagined.

But in the real world you have to work as if he can be.

Attack

My wife is an extremely strong individual. I would say she is probably the strongest person I have ever known. When I was first diagnosed with cancer in 2000, she got me through it. When we were poor, she shopped at Goodwill, started a garden, and fed me delectable vegetarian cuisine. When we had kids, she had the courage to be a stay-at-home mom while the feminist inside her withstood the judgment of our society, and when I was diagnosed with cancer again, she drove me back and forth to Cleveland all year long, cared for both me and the kids, and overcame the emotional trauma that comes with watching your husband face death over and over again.

But this was different. This was her baby boy.

Noel and I react to adversity in quite different ways. It is apparent even in the way we play soccer. As a midfielder I am always trying to see the game from above—the big picture. I take my time, analyze the scenario one piece at a time and patiently make my way up the field. Noel plays the striker position.

The striker has one job—attack the goal.

So for this battle I set aside my wimpy philosophies, joined forces with Noel, and we set out to attack. We were going to cure Gideon. He was going to talk. He was going to play with other kids. He was going to point and pretend and tell jokes and do all the things that autistic kids do not do. He was going to do extraordinary things. He was going to grow up to be the genius who solves this autism crisis thanks to the resulting wisdom of his unique perspective.

And we would make sure of it, even if it killed us.

Persevere.

We soon discovered that “attack mode” would kill us.

Over the past two years we have had the privilege of working with trained people who love autistic kids and love Gideon and have helped us a great deal in developing our intervention strategy. They are unheralded laborers who work for the public schools and community health organizations and even non-profits. We have moved on from the help of some of these teachers but hold them all in high regard and consider their work a very important part of our journey.

One of Gideon’s teachers enlightened us one day when she said “This is not a sprint, it is a marathon.” (Sometimes I feel as though it is more like running a marathon for years while towing a school bus full of screaming kids). Although the attack method probably would do wonders for Gideon in the short term, it would have been devastating in the end. We would experience frustration when we did not see immediate results; our other two kids would basically have to raise themselves, and ultimately we would all burn out, which would obviously put Gideon in a hopeless situation.

So we persevere.

It has been and will continue to be a long and difficult journey. However, we have found that although the lows are low, the highs are really high.

Gideon has brought challenges to our lives that we would have never chosen for ourselves, yet he has brought joys that we never could have imagined otherwise.

Like the day he all-of-a-sudden knew the whole alphabet forward and backwards.
Like when he said his first word “more.”
Like when he pretend-burped at the dinner table just to make us laugh.
Like when he fed his baby brother a spoonful of food.
Like when he called his sister “Sadie” for the first time.
Like when he figured out how to access pbskids.org all by himself.
Like when he played pirates on the trampoline with the neighbors.
Like when he said “I love you Dad” for the first time.

And like every time he has ever done any of those things again.