Thirteen Years Ago…

20 Feb

Saturday, my oldest turned 13 years old.

The pregnancy was almost absolutely normal, and I remember going through the childbirth classes with several other couples, sharing a lot of anticipation.  Finally, the day came.  I came home and my wife let me know that it was time to take that trip to Tallahassee.  I remember giving her a stopwatch and told her to hit the splits button whenever she felt a contraction.  All the way down, I could hear a “beep” every time she hit the button.  The watch was rather high tech, and would keep track of the closest and furthest contractions as well as the average time between them.  It’s the nerd in me that wanted to know such things!

We were doing pretty well, but it was a pretty long night.  When he was born, I remember cutting the umbilical cord and I also remember a swarm of nurses coming into the room.  I had no idea what was going on.  As it turned out he had a pneumothorax which caused one of his lungs to collapse.  He was rushed to the NICU, and I went with him, leaving his mother who was also in some distress of her own, unbeknown to me.

I remember him wiggling around as they attached the wires and tubes and needles.  He spent 4 days in the NICU, before it healed on its own without any medication, surgery or other interventions beyond oxygen. I was in a total daze.  I had no idea of what was happening at the time.  Or that this was just the beginning of a long journey.

In my wife’s words:

“[He] was born on his due date. As he struggled to take his first breath, his left lung collapsed. Within the following day, his lung had healed without requiring a chest tube. He spent a total of 4 days in the NICU. When he was 2 weeks old, we was back in the hospital with aspiration pneumonia. He was diagnosed with moderate reflux. When he was 4 months old, he started having seizures. At 15 months, he lost the ability to speak the words he had acquired. At 20 months, he was diagnosed with autism. I often asked, “God, why me??”

My wife was always a step ahead of me as far as recognizing when there were problems.  But it was my own background in special education that enabled me to recognize that we were seeing something akin to autism.  The when I asked him, the neurologist admitted that it could be some form of developmental delays and gave him the PDD-NOS diagnosis.  Pervasive Developmental Disorder – Not Otherwise Specified.   Back then, they seemed very reluctant to give an autism diagnosis, especially to someone as young as my son was.

Our story follows a similar trajectory of many other families as we experienced the ups and downs of life with autism.  We had the assistance of many good and competent therapists and teachers.  And there might have been a few less-than-good ones along the way.

He has generally been a happy child, but the teen-aged years are starting out very rough for him.  He has been changing into a young man for the past couple of years with his voice changing and then the attendant mood swings that goes along with this transition.  And typical middle school behaviors of his peers have not helped matters as other kids make fun of him, and he is unable to ignore or handle the name-calling and criticism like he could when he was younger.  There was a time when he often could care less what people thought of what he did or said, but today it is far different.  He is very sensitive about what his peers think or say and of course it is the negative things that get amplified.

In a lot of ways, he reminds me of Daxflame, a teenager who became somewhat notorious on youtube for his meltdowns on camera.  But if you watch (and they ARE hard to watch for those of us close to autism and Aspergers) you can see him struggling to control himself, to be understood and to make friends.

As hard as the videos are to watch, the comments are even more hideous. He exhibited a lot of courage putting himself out there like that.

So as difficult as the first 13 years have been, we’re entering some entirely new territory. In some ways this is much like all parents of teenagers, but with an added complication that makes the conformity demanded by teenagers all but impossible for my son. How does one “fit in” when almost everything they say or do makes them stick out?

3 Responses to “Thirteen Years Ago…”

  1. Rosemary March 6, 2012 at 9:11 am #

    Just discovered this post–thank you. My son is 12 and we are having many of the same experiences. We homeschool, partly to avoid the horrible stress, bullying, etc. The good part about it is he enjoys a lot of every day when he can do his favorite activities. The challenge is boredom, some loneliness, resistance to trying anything new of any kind. I have the sense he needs something more, but it’s hard to find. Other friends on the spectrum might really help, but they’re hard to find, too.

    • Daniel Dage March 12, 2012 at 3:58 pm #

      We have also considered the home schooling route, but can not swing it financially at the moment. But I have often wondered about the boredom/lonliness issues as school is such a major social meeting place. And it is the main reason for kids wanting to or not wanting to go in the first place. Friendships and peer influence become such huge issues at this age and it is difficult to know how to best help. It is a minefield even among those who do somewhat understand some of the nuances of social communication.

  2. Anonymous March 28, 2012 at 1:32 pm #

    Dear friend, I am an adult with autism. Every day has challenges that are even more difficult when a normal person decides to deprive or abuse a person with disabilities. My life has so far been difficult,because many individuals have determined that i am an easy target,So far,always doing what i have been told, has caused me great harm, Over the past eleven months, an intelligent articulate woman had methodically taken without my knowledge,or permission most of my bank account, She even tricked me into signing a durable power of attorney,When it seemed to be at the end of the free ride,{my unemployment benefit} she decided to make herself the victim,With wild accusations of abuse, Her sister operates a school for autism,and knows me well enough to know what is going on, Also she has a copy of the eleven months of Wells Fargo statements,indicating so obviously,blatant theft,paying her credit card,and even making me withdraw cash on several occasions for,so called attorneys fees for my child custody,all of were paid on line ,Now i am left to defend myself without any support system,the local police called a civil matter,Abusing,harming, making false allegations to persons with disabilities should be an important matter<Please make it matter. respectfully Frank E-mail

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