Looking Back….

As is true of so many life-altering days, this one started out like all others.

Completely normal.

We awoke that morning and completed our daily routines, my wife preparing for another day of teaching and taking our oldest son to his daycare, while I got ready for another day supporting computer users.  There was really nothing at that time that clued us in to the way our life was about to be turned upside down, no real yellow flags that we had noticed.

RJ began talking sooner than many children his age, and he had begun walking a bit earlier as well, but those are GOOD things, right?  And at an early age, he had taken a shine to the computer, even managing to somehow change the password on my computer one day.

Oh, sure, we knew that our son had an ability to focus so completely on whatever held his attention that nothing could break his concentration.  As he grew older, he slept less and he had real difficulty sitting still.  He was always in motion, something that had become a bit of a problem at his daycare center and even for us when in situations that really required him to sit still.  And yes, we had caught him numerous times putting things into his mouth that really didn't belong there.  Hair was a favorite.  But then, he was a toddler, and toddlers put all manner of things into their mouths and have trouble sitting still for any length of time.  And the temper tantrums, or what we thought were tempter tantrums, had begun to appear as well.  We dealt with them as most parents do, letting our son know that such tirades were not acceptable, disciplining him as necessary; the meltdowns subsided.

Such things are quite common - or so we thought.  

We would learn otherwise.

It all changed on the day I came home to find my wife crying.

We had been asked to remove our son from his daycare center.

It seems the problems were worse than we had been able to see, and far worse than they had ever let on as well.

RJ's inability to sit still, his need to constantly be in motion, was becoming a big problem for the staff to deal with.  He wouldn't sit still during stories, wouldn't lay down during nap times.  He seemed to be having difficulty understanding the stories that were being told, and had begun having screaming jags.  Where, before, we had seen rapid development of speech skills, they were now beginning to disappear.  He was beginning to spend more and more of his time alone, shunning the other children  And to top it all off, his potty training wasn't coming normally, either.  Because RJ was our first child, we really had nothing else against which to compare his development at home.

They told us, for the first time, that RJ needed to be evaluated for a developmental disability.

We removed RJ from the daycare center, and set up an appointment through our school district to have him evaluated, confident, frankly, that we would prove that the concerns of the daycare provider were blown out of proportion.

This, by the way, was our first encounter with the special needs services that can be provided through one's local school system - file that away; you're going to need it.

When we arrived for our appointment, our son was put through a battery of tests, most of them couched in either play or story.  We watched from the observation booths for the next three hours.  When we were finished, the news wasn't good.

Autism.

To say that we were devastated would be an understatement.  Absolutely nothing prepares you for such a diagnosis.  You get married.  You look forward to having children.  You have hopes and dreams for your child.  As a father, in particular, you look forward to enjoying certain traditional pastimes with your son.  With the receipt of a developmental disability diagnosis, all of that changes.

Anyone who says MEN don't cry has never received this kind of news.

But the diagnostic experience isn't quite complete, yet.

You see, this diagnosis must be confirmed by a neurologist.

So we set up the appointment.

On the appointed day, we took our son in.  The appropriate scans - functional MRI and CAT - were performed, and we waited for the results.

The doctor wasted no time getting down to the diagnosis.

Again, autism.

I asked him if there was any chance that the scan could be indicating anything else.  After all, our son had come through a high risk pregnancy.  We were in our thirties when RJ was born.  My wife had been on complete bed rest toward the end of the pregnancy because of concerns for his health.   The delivery had required the intervention of the high risk delivery team.  RJ's vitals disappeared three times.   He had been without oxygen for part of the delivery.  He had deep bruises along the back of his skull from the forceps they used to extricate him from the birth canal, and we discovered at his 6 week checkup that his collarbone had been broken during the delivery.

Was there ANY chance that the scans could indicate something else?

"Mr. Kuiphoff, your son has autism.  There is no cure.  Go home and deal with it."

Thus began our journey into autism.

Prologue...

In the coming days, I hope to share the highs and the lows we have experienced since receiving the diagnosis of autism for our son, R.J., more than 13 years ago. 

This is an ongoing journey, a fight against a disorder to which we refuse to surrender.  

And we still pray for a cure.

Yes, a cure.

You see, contrary to what so many have allowed themselves to believe, there is nothing normal about autism.  

It is not a gift.

There is very little more frustrating to us as parents than to watch the son we love, a perfectly normal teenager with all of the hopes and dreams that go with that age, struggle to achieve those hopes and dreams while trapped in an autistic body, denied the ability to pursue the same kinds of relationships as those he sees around him because he is different.

But we also know how far he has come, what he has achieved to this point in his life with God's help, so we have hope for his future.

John 9:2b-3 (ESV, paraphrased):

“Rabbi,who sinned, this man or his parents, that he was born with autism?”  Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.

We have no idea what works God wants to perform through our son, but it is this hope that keeps us going.

It is our hope and prayer that you find something helpful and encouraging as this develops.

There IS hope.