'Good days. Bad days.'

A father’s journey with Autism

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They’ve become our magic words. It’s like giving yourself permission to take a do-over. And we need that. This disorder is still a mystery for the most part. We’re dealing with something that, in most cases, parents are just as much as the experts as the doctors.

Most days you pray for small miracles. A tiny sign of improvement. Anything. Having a day with no “potty” accidents because your child cannot use verbal skills simple enough to ask to use the toilet. A full sentence with at least three words used in context and not some phrase echoed from a movie or cartoon. Even something as simple as, “Good Morning, dad” is cause for celebration.

The thoughts are there. You can see the wheels turning. You see the struggle in your child’s eyes. The frustration building as they ball their fists and go through a series of neurological ticks and barks that come out instead of the words they so desperately want to use. You’re helpless as you try to will the words out of your child’s mouth. Their frustration becomes your frustration.

According to Zaragoza, many marriages end over the added pressure of raising a child with autism. The constant meltdowns, outbursts and added medical costs are often too much for the marriage to survive. Throw denial on top of that and you have the equivalent of a ticking, emotional time bomb. When asked what the most difficult challenge she faces within her job, Zaragoza pauses, then says uncomfortably, “domestic violence.”

Fortunately, things never got that bad in our home but I could easily see how they could. There were times when I was so angry that I couldn’t make it through the day without snapping at someone I loved.

Depression sank in and my marriage suffered. Soon, my wife and I couldn’t agree on the simplest things. Communication is impossible because the things you need to say are too painful. And listening is out of the question because your ego has shut down to try and protect itself. Everything compounded by the hopeless feeling that, as a father, I was powerless. I couldn’t fix my son.

Now five years removed, that time was the low point. Sure, I was in denial and certainly depressed. But I was also feeling sorry for myself. I had a family who needed me. Fortunately for all of us, while I wandered around in a fog, my wife, Wendie, took over.

Wendie says that she knew in her bones there was more going on with our son than some “late bloomer” phase as our HMO pediatrician had supposed. Like all good mothers, Wendie made it her mission to get answers and demand help. And woe to anyone on the end of the phone line who tried to feed her the scripted line of HMO insurance doubletalk.

Wendie refused to take “no” for an answer. She requested a different doctor, one who would actually talk to us and really listen. They eventually did just that. We met with a female physician who actually listened to us.

During that visit, the word “autism” was first introduced into our lives. The doctor couldn’t be sure but certainly suspected it. She gave us the referrals that we needed to navigate our way further into the maze of HMO healthcare — a coveted doctor’s referral being the golden key that opens the door to specialists, neurologists, psychiatrists, psychologists, CAT scans. The works. All concerted in an effort to diagnose our son’s problem.

It wasn’t long after we received Dean’s diagnosis that we met Frank Dang, a health professional working to help families living with developmental disorders find support services. We soon learned that Dang had a son who was also living with autism. We were told that his son Urian was 21, going to college and working part-time.

It was Dang’s personal perspective and positive attitude that helped my wife and I understand that there are much worse things than life with autism. College? A job? Those were hints of the so-called normal life that we’d once dared to hope for our son.

Dang reassured us that autism is not a degenerative disorder. As long as you continue to work and build your child’s strengths, they can only grow. But that’s not to say that things get easier. When we asked how things are different from raising a child with autism to now living with and caring for a 25-year-old man with autism, Dang took a long pause before saying, “It’s the same.”

The answer shook me up a bit. I guess I was hoping to hear a bright, sunshiny answer like “everything gets better with time.” In his usual positive manner, Dang quickly added, “We still have to teach him things every day. No matter how many services or teachers there are, no one can teach like a parent because of the time involved.”

And it’s just that type of love and caring that give a parent the energy and motivation to persevere when we’ve all felt like giving up. Dang goes on to add, “Parents don’t need a medical background to cope. They have the skills as parents. They need to find what external motivation helps their child.”

After the first visit with Dang, we felt our first sparks of hope. Thanks to him, we now had a plan. Dean’s diagnosis of autism may have felt like a kick in the guts but there was some relief in actually knowing what was troubling our boy. It was a place to start. The mountain may have looked terribly high and treacherous from where we were but at least we knew which way was up. Before the diagnosis, there was only darkness and uncertainty.

In the five years since first leaving Dang’s office, the progress has been astounding. Dean could not speak in context or socialize with others and had virtually no coping skills. Five years later, after lots of hard work, let downs, triumphs and some luck, we have a content and happy child. He smiles, laughs, interacts with others and, with some coaching, can tell us what he needs most of the time.

All the various therapies chipped away daily on the wall that had surrounded our son: speech therapy, occupational therapy, socialization therapy, even play therapy. No magical cure, just good, hard work on a consistent, daily basis.

There was also the introduction of various medications as a form of managing our son’s emotions. I didn't like it. Honestly, I hate it. The idea that my son needs drugs to function was and is something I still wrestle with. However, there is no denying that the results were mostly positive. Dean simply could not focus in a classroom setting. He couldn’t relax his mind long enough to absorb anything. So in his case, the medicine allowed him to calm down long enough to gain something from a day of school.

There were drawbacks too. The medicine suppressed his appetite and we had to really monitor his intake to make sure he didn’t lose weight. There were also the daily meltdowns that followed at home when the meds wore off. All of the chaos and noise that he would absorb during the day was kept in check by the medication. Once it wore off, the flood of emotions came out in a sudden wash of distress and panic.

We could see the benefit of the medicine working in conjunction with his education so we had to find ways to soothe him when he got home. A quiet, cool, dark room. Or a soothing bath. Sometimes it was a losing battle and he would just cry himself to sleep and hopefully be calm when he awoke. To this day, medicine is part of his regimen. But as I say, for him, the benefits outweigh the drawbacks.

Not long after Dean’s diagnosis, we were able to get him into a preschool class at the Whittier Educational Center in Clairemont. His first days away from home were pretty bad. The teachers said there were lots of tears but they remained positive. They were all so amazing and patient. Still, it was a scary time to first allow yourself to trust others with our troubled boy.

I remember his first day on the school bus. The afternoon bus was late coming home by almost an hour. We were panicked. Where was our son? Did something happen? When the bus finally pulled up, the driver apologized as there was a traffic accident on the freeway. Dean was teary eyed as I picked him up and walked him off the bus. The poor kid took one look at me and threw up. Thus began his journey of formal education.

But just a few days later, a funny thing happened. A miracle. At least it felt like a miracle to us. Like most autistics, Dean was a visual learner. He understood and could relate through pictures. With the help of some fine therapists and educators, we had finally found a way to help Dean express himself.

The Picture Exchange Communication System, or P.E.C.S., allowed Dean to assemble a series of pictures in a sort of sentence that expressed what he wanted or needed. It was the wedge that opened the door, and we kicked it wide open. By using the pictures to express himself, bits of relevant speech soon followed. My 5-year-old son was finally starting to speak. Not just speak, but relate to people around him.

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