Sunday, March 05, 2006

John


I slept a little late this morning and when I got up I was a bit surprised to find Alex had convinced John to go outside to play basketball. I watched from the window as they passed the ball back and forth beneath the goal. When John made a shot Alex transformed herself from opponent to cheerleader, jumping around wildly and yelling, "Yeah, John!" as he beamed with pride.

John has to be in just the right mood to engage in any sustained interactive activity. More often than not, his autism draws him into solitary activities. When John was younger, we used to pester him to do the sort of social things we thought he should be doing. But being forced out of his shell made him melancholy, and over time we've come to realize that John has his own preferences that should be respected.

What's it like, having a child diagnosed with autism? It's like being thrown into a pit - a dark pit where you clutch your little one and fall, fall, fall through the darkness not knowing where you'll land. Someone whose three-year-old is diagnosed with autism can't look at an autistic teen and say, "So my child will be like that one day," because austim is such a wide and varied spectrum. Some austistics are extremely high-functioning and intergrate well into society. Others are so profoundly compromised that they need constant supervision to keep from hurting themselves. Many, like John, are in the middle.

With time, though, one learns to be grateful for what one's child can do, rather than focus on what he or she can't. Yes, part of me grieves that John will never know romantic love or comprehend the plot of a good book. But part of me admires and even envies a life uncluttered by prejudices, jealousies and grudges. Unswayed by the politics of life and relationships, John loves who he loves with genuine affection. He finds joy through immersion in his chosen pursuits. He adores his video games, riding our Haflinger pony Guinevere, bike riding, playing soccer and doting on Jingles the Cat.

He has a very Zen perspective. He lives in - and enjoys - each moment without worrying about the next.

As a brother, John has taught his siblings the importance of appreciating the limits and differences of others, as well as something about autism itself. They all love him, but it is 8-year-old Alex who is his biggest fan. She's become an ambassador of sorts, a protective go-between quick to explain her brother's lack of eye contact and reserved manner to strangers.

Alex was about three when she noticed something was different about John. We were in the car and - as usual - she was chatting him up. On this day, he was particularly quiet, and it annoyed her.

Why, she asked us, did John not always talk to her.

Larry and I looked at each other and explained - as best one can to even a precocious three-year-old, that her big brother was autistic. He was different and didn't always like to be touched or carry on conversations.

We waited for a reaction but got only a shrug. Alex seemed quite willing to accept John for who he was.

But a few days later, when John was ignoring her again, she ran up to me and fumed, "Mom! John's being autistic to me again!"

So we sat her down - trying not to laugh - and explained to her that being autistic wasn't something John was doing to annoy her. He was born that way, just as some folks are born blind or deaf. Part of loving John, we said, is respecting his limits and letting him be alone when he needed it.

Allowed to flourish on his own timetable, John has become ever more approachable and engaging. The child who used to retreat into himself is with us now more than ever, knowing that if he needs to escape for a bit no one will try to stop him.

Watching the gains John has made over the years has been bittersweet. We know there are limits. But the pain of his diagnosis has been overwhelmingly replaced by the blessing of his sweet, uncluttered nature and ability to teach - from his own world - by example.

I've heard it said that God gives children with disabilities only to special parents who are up for the task. But I don't believe that. I don't consider John's presence some cosmic flattery of a God who saw us worthy of parenting him. No. I believe children like John are here to teach those of us who have much to learn. I'm humbled by John's presence, and thankful for having been sent such a teacher.

22 comments:

Taylor said...

Morgan, that was beautiful. John is fortunate to have a mother, family like yours. Little Alex: "Mom! John's being autistic to me again!" They do say the darnest things.

Are there any alternative treatments out there that help at all? There's probably an overwhelming amount of information on autism on the Internet. I suppose you have done everything possible. It is very apparent that you have done the most important thing and that is to have the right attitude - it makes all the difference in the world.

prettylady said...

I second Taylor's comment--that was one of the most beautiful things I've read in a long time. I have more admiration for you than ever.

Morgan said...

There are so many opinions about what causes autism - heredity, vaccinations, diet, allergies environmental toxins - that I've come to believe it's more than one thing.

We were extremely concerned about Lucas, who showed signs of autism when he was around a year old. He didn't talk, wouldn't hold eye contact and had the same erratic sleep patterns and behaviors we'd experienced with John.

When Lucas was two, he was evaluated and diagnosed with Pervasive Development Disorder Not Otherwise Specified - a vague, clinical term that meant the psychologists thought he was somewhere on the autistic spectrum.

We put him in speech therapy with a wonderful woman who suggested we try a diet free of wheat, gluten and dairy that - when used as early intervention - "cures" the symptoms in about 30 percent of children.

To make a long story short, within a month Lucas was talking. His therapist went on to believe he was not autistic, but apraxic - a condition where there's a short circuit between thinking the words and getting them out.

Today, Lucas' shows none of the signs of autism that had so concerned us. He's highly social, engages in imaginative play and has normal speech. We still wonder, sometimes, whether more was going on, but whatever was going on responded immediately to the special diet, which we've continued. It's expensive and involves cooking separate meals for Lucas, but the benefits are worth the extra work.

Dietary changes did not help John, as whatever caused his autism remains a mystery.

More kids than ever today are being diagnosed with autism and there's a lot of debate about that. Are more children autistic, or is the condition over-diagnosed?

It's very hard to say, because the symptoms autism itself are so varied.

A few years ago, I had the good fortune to meet a man with autism who contacted me after reading something I'd written about my son. This fellow was a very high-functioning writer and musician who has become a dear friend. I went on to write a magazine article about him and he's helped me to understand what may be going on in John's mind.

Thanks, Taylor, for your kind words.

John will forever be a mystery to us, but when you have a child you take what you get and are grateful for the experience.

Attitude is everything, and we've tried to accentuate the positive. One of the most memorable things anyone's said about John came from my friend Ann, who once referred to him as my "baby spirit." That was very apt. He is a pure soul, indeed, and a good person.

Morgan said...

Thanks, Pretty Lady. :-)

Morgan said...

"They do say the darnest things."

Alex is the Queen of Saying the Darndest Things, especially where John is concerned.

Two Halloweens ago, we went trick-or-treating in town. Lucas was a bee, Alex was Little Red Riding Hood, and John was a vampire, complete with cape, white makeup and teeth. It was a Friday night, the night we usually reserve for going to the bookstore. Because we ended the trick-or-treating on the other side of town from where our "usual" bookstore was located, we went to another one.

For John, who really likes routine, this wasn't acceptable. We'd only been inside for a few minutes when I realized he was crying.

"What's wrong?" I asked him.

"I want magazines," he said, referring to the video gaming magazines he prefers.

"There are magazines here," I said. "They're in the back."

"I want Barnes and Noble magazines," he said.

"Well, we're going to look at magazines here instead," I said gently.

John tried to pull himself together but was quite a mess at this point, with tears streaking his face paint. People were starting to cast odd glances as this nearly six-foot tall, crying vampire.

Alex felt compelled to step in.

"It's OK, everyone," she said, "Holding up her hands. This is my brother and he's just autistic."

A few people smiled. An old man walked up and patted Alex on the back and told her what a good sister she was. She beamed and took John back to help him select a magazine.

We've learned to circulate between bookstores so John won't get stuck in a rut. If he does get anxious about something, it's common to see Alex whispering to him that everything's going to be OK.

And it always is.

Bane said...

Tsk. It seems we have much in common, including our mutual hatred of each other.

Sad, really, when you think about it.

Taylor said...

Morgan, your little Alex sounds like a joy. Through John, she is a wiser and better little person than she would have been without him in her life. Funny how God works, isn't it? What we often view as misfortune is actually God's hand shaping our lives, ourselves for the better.

I briefly dated a man who had never seen misfortune in his life. He had nothing inside himself. He was a shell of a man. I dated a man who had nothing but misfortune in his life. He was amazing.

Morgan said...

I don't hate you, Bane.

tc said...

Good morning, Morgan. Here's a link concerning a young autistic woman who got her Ph.D. from the University of Illinois recently:

http://www.theithacajournal.com/apps/pbcs.dll/article?AID=/20060216/NEWS01/602160329/1002

She's done some great work on animal sensory systems. I never got to meet her (she, of course, was extremely reclusive while she was here.)

BTW, I hope that I didn't overwhelm you with my email. We're not particularly scary or intense or anything, I just wanted to give you enough information so that you could ask informed questions if you wished.

Best always,

Tom

Morgan said...

Taylor, one of my favorite phrases is "Life is like licking honey off a thorn."

To get the sweet you have to risk and endure the spikes.

I think trials do make us better people, even if we don't see it at the time.

Some people believe when trials do make us better it's because they're endured with grace. That's a load of crap, though. I've not always greeted tragedy or disappointment with grace. When John was diagnosed, oh, how I cried and railed at God.

But life is a tide. You can only cling to that rock of anger and depression for so long before it pulls you away. Then you have to keep your head above water. Once you accept that you're stuck in the current, you learn to swim with it.

The swimming is sometimes mistaken for grace when, in fact, it's something you just have to do. The trick is to learn to appreciate the feel of the water and go with it, rather than fighting what you can't.

Morgan said...

Tom,

Oh Lord no! I loved your email. In fact, it was so thought provoking that I wanted to set aside a block of time to respond.

I was so inspired and so impressed both by you and what you had to say, and have so many questions for you! I'll try to write later today.

I'm quite familiar with Temple Grandin. I've seen a couple of specials on her and "Animals in Translation" is on my reading list.

Another book I'd recommend is "The Curious Incident of the Dog in the Night-Time." It's a work of fiction written from the perspective of an autistic teen, but it is so wonderful and moving, especially if you know or have a loved one with autism.

Shrubbery said...

Morg, you see that story about the autistic kid who drained six three pointers in three minutes in his last high school basketball game. Check out ESPN, they've been running the story since last week. I thought of you immediately.

http://sports.espn.go.com/espn/news/story?id=2352763

Morgan said...

I loved that story so much and when I saw it on CNN it moved me to tears. What really got me was the way the stands just emptied with other kids cheering him on. It was awesome.

My supervisor at work printed the photo and story out on a page for me to take home. I have it up by my computer.

I think the boy's autism helped him sink those shots.

I know John has much a much better grasp of spatial relations than most kids.

He's also a real whiz at video games. It's amazing. I bought him a couple for Christmas and he'd beaten them both within a couple of days. I don't even try to play Tetris with him unless I'm in the mood to get trounced. He's like a robot with that game.

Mia said...

Morgan, thanks for sharing your story about John. I can relate as my younger son has ADHD.

I live in the NY town where JMac scored the goals. This incident brought so much joy to our entire community and I'm hopeful that it will help ease the "stigma" associated with disorders such as autism and ADHD. Take care, Mia

Mia said...

OOPS!! I should've said "baskets" maybe - you can tell that my kids play soccer rather than basketball:)

Mia

Morgan said...

Mia,

That's great that you live in the same town as JMAC. I can only imagine all the buzz. I heard Disney has contacted his family. I hope so; that would make an inspiring story.

It's nice to see autistic and similarly afflicted children gain appreciation for who they are. I prefer it to the false appreciation that comes with assigning labels like "special" or "exceptional."

We were in the bookstore one afternoon when a young boy tried to engage John in conversation. When John refused to acknowledge him, I offered that John was autistic.

The mother gave me the sort of sympathetic look that had obviously been perfected through Much Practice, and said, "So, your son's...special."

"No," I replied. "John is no more special than my other children.

She looked flustered. "Do you prefer exceptional?"

"No,"I told her. "Because that implies my non-autistic children aren't exceptional. John isn't any more exceptional or special than any other child. He's just different."

She scowled, gathered her child and left without another word.

I don't know who comes up with these euphamisms like "exceptional" "special" or "differently-abled." I'm sure they're well-intended but I think it's a denial of the challenges mentally or physically disabled people face. It's a denial of part of who they are.

Good luck with your sons ADHD. My newphew is ADHD and he's had quite a tough road with it but is doing well.

Mia said...

Morgan,
My pet peeve re: ADHD is the comments I get from people that don't really understand ADHD and the ones that chastise me for giving medication to my child. I realize that ADHD is a controversial issue but I don't think people should judge your situation if they haven't lived it. We refused to use medication until he broke away from me as we were exiting a plane, running across the tarmac and under an adjacent plane. This story usually gets them to understand the impulsivity of these children but I tire of telling this story constantly.
Mia

Morgan said...

Mia,

Parents know what their children need more than anyone else, so just brush off the criticism.

Drugs like Ritalin are - in my opinion - overprescribed, but in some cases medication is warranted, especially in situations where a child's inability to control his or her impulses puts him or her at risk.

We feel fortunate that John doesn't have any problems with hyperactivity. Like many autistic children, he does have a touch of Tourette's Syndrome and we have been asked if we want to put him on medication for it. But his odd little tics don't bother us and we can't see doping him up to make other people feel more comfortable. However, if he had some sort of behavior problem or imbalance that we felt in anyway compromised his safety, such a decision would be a no-brainer.

Don't let anyone make you feel as though you have to explain your decisions. You're a loving mother doing what is best for your son.

Mia said...

Morgan,

Thanks for your kindness and wisdom.

Mia

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