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I've been thinking about what to write about for my first diary for the Parenting on the Autism Spectrum group.  It certainly would be easy to write about the frustrations of interfacing with the various bureaucracies which any parent has to deal with.  Maybe for my second diary.

For my maiden diary, let me tell you a little about how we started this journey we are on.

When I was in my early 20s, I spent most of my summers with a razor-sharpened trowel in my hand, scraping thin layers of earth out of a square hole.  I was an archaeologist.  That career is long past; why is another story.  One of the sites I worked on was at a place named Nauvoo, which was the location of a city of Latter Day Saints, situated on the Western Illinois bank of the Mississippi River.  It was there that the first Prophet, Joseph Smith, Jr. ran the church, and whence 17 sects broke off after he was killed, the most prominent of which is now the Mormon Church.  We got a lot of tourists visiting our excavations.  Invariably, at least one of these would say to us "When I was a kid, I wanted to be an archaeologist".  Whatever path my lfie has taken since then, I do not have the regret of having missed out on that adventure.

What has any of that to do with autism?  Just this:  One quiet day, in the early afternoon, my friend Paul and I were the only archaeologists digging in the squares.  The rest were in the lab, writing with rapidographs on the sides of ceramic shards.  Nauvoo is a small town, and we were an object of curiousity to the locals.  So it was that, as we dug, a pre-teen local girl sat watching us.

Few folks who have not worked in archaeology are aware of one of the most appealing aspects of sitting in a dirt square all day, often being driven into the ground by summer's heat.  Namely, that the slow and quiet rhythm of digging invites conversation.  Not about the weather, or sports.  Open-ended philosophical, political and religious conversation.  An opening up of personal vulnerabilities and intimacies.  The kinds of conversations we usually are afraid to have under normal circumstances.

So, when (I'll call her) Julie started talking about her younger brother that day, neither Paul nor I were surprised.  Her younger brother had Down's Syndrome.  Julie explained to us how hard and frustrating that was for her and the rest of the family.  It was clear that she was looking for guidance, or at least solace.  Paul said nothing, quietly scraping and brushing away in his square.  Along with being an archaeologist, Paul was a "priest" in his church, which in those days was called the RLDS, and is now known as the Community of Christ.  When he said nothing, I knew that he was waiting to see what I would say to Julie.  I looked at Julie for a moment, and then said something close to the following:  Julie, do you realize what a gift God has given you?  You have been given an opportunity to give and receive unconditional love.  Julie looked at me and, after a while, nodded silently.

The day that my son's neurologist told us that he was an autistic, I remembered that conversation with Julie.  God had been paying attention, and considered me worthy of that same gift which I had told her she had been blessed to receive.  No matter how difficult today can be, I never forget that.

I got married later in life than most; I was 36 years old.  And our first (and only) child was born in 1999, when I had reached the age of 41.  That puts me roughly 9 years above average in each category.  Why do I mention this?  Well, a couple of studies have suggested that dads over 40 are significantly more likely to have a child with autism.  So perhaps that may also have something to do with how our son came to be an autistic person.

Ethan (not his real name) was late to the party on most of the developmental benchmarks; sitting up, crawling and so on.  But we didn't think much of it; boys, we told ourselves, are often later bloomers.  He used to stare off into space a fair amount.  I joked that he was listening to the angels.  That remained the situation until one day shortly after Ethan's second birthday.

I was watching TV when my wife blurted out Evan is having a seizure!  I got up and walked over to the high chair.  Evan was blinking rapidly; I looked questioningly at my wife.  I had a dog once who had seizures, she said.  That's what they looked like.  So off we went to the emergency room.

It was, to say the least, a very traumatic experience.  There is nothing like walking into an emergency room with a toddler.  I have never forgotten how, in that haze of chaos, I noted how many caregivers and even patients watched us with obvious compassion.  Ultimately, Ethan and I ended up in an EEG room.  Ethan's mom can get very nervous, and we agreed it was better if I handled that part of the ordeal without her having to be involved.  It is fair to say that Ethan was violently uninterested in being strapped down and having electrodes attached to his head.  But he was young and small then, so the EEG technician and I were able to collaborate to get that accomplished.  (As time has gone along, it has gotten to the point where it can take myself and five burly nurses to set him up for the EEG).

In the process of the struggle, Ethan eventually wore himself out, and fell asleep.  I sat there, holding his hand, weeping silently the entire time it took for the procedure to be completed.

The initial diagnosis was for epilepsy, which was a heavy blow for us.  Among other things, our son might never be able to drive a car.  But we started to adapt.  That is, until the neurologist met with us.  Our son was having petit mal seizures, perhaps as many as hundreds a day.  But it wasn't just epilepsy. Our son had PDD-NOS.  What on earth was that?  Well, it was kind of like autism light.  Ethan had some autistic behavioral symptoms, but not enough to call him a full-blown autistic.

That all changed within a few weeks.  We had a follow-up visit at the clinic, for which my brother and sister flew into town.  The doctor was an older woman, but still a fairly new doctor.  She clearly never got the "bedside manner" memo.  As we all sat around her desk, she explained that, indeed, Ethan was an autistic.  Ethan's mom, who at this point had been holding up, barely, lost it. Oh my God, what are we going to do?  The doctor replied Well, you can always have more children. (No, really; that's what she said).

It was at that moment that I remembered Julie.  It turns out I was right.  However hard it may get on a day to day, moment to moment basis, I have never regretted having the son that I do have.  He is my greatest blessing and joy.  I cannot imagine my life without him.  We are all familiar with the old adage about the glass half full or half empty.  In my case, I see a glass soon to be refilled to the brim by that Higher Power which placed its trust in my ability to steward Ethan so long as he needs it.  My love for Ethan will only grow.  I look forward to the day when he will become sufficiently independent to be achieve a greater level of separation from me.  But in the meantime, every day in his company is a glorious adventure.

More next time.

Originally posted to Parenting on the Autism Spectrum on Fri Mar 04, 2011 at 08:00 AM PST.

Also republished by Community Spotlight.

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