A Child’s Disability

I have a son who has autism. Autism is a disorder that is hard to describe and even harder to diagnosis. My son Phillip was almost three before my first husband and I became concerned about certain behaviors, and more importantly, skills that were not developing.  He was six before we found a team of doctors who could tell us what was wrong.

When Phillip was born, he was the most beautiful baby I had ever seen. A large number of nurses and my doctor agreed. He was a drop-dead gorgeous baby; a head full of sandy golden hair, huge dark eyes, and a beautiful skin. My husband and I couldn't believe how wonderful our baby was!

The first few weeks were pretty tough, but we got through them and eventually I learned to tell the difference between cries, how to bathe quickly and thoroughly, how to combat diaper rash and the hundred others things that every new mom has to learn. Phillip seemed to be completely normal, even better than normal. He hit every development milestone on time or early. We talked about sending him to Harvard.

The first time we noticed anything was amiss was when Phillip was three. We were visiting my in-laws and Phillip was running around playing, making us all laugh. My father-in-law asked Phillip a question and Phillip didn't respond. He asked again but Phillip barely even paid attention to his granddaddy. My father-in-law asked me, “Why doesn't he ever answer me?  He acts like he doesn't hear.”

It was like being hit with a brick. Even as I denied that anything was unusual, I had already realized that my father-in-law was right. Phillip did talk, sometimes non-stop. But he rarely talked to us. We had to ask him direct simple questions repeatedly in order to get a response from him.

I decided to take off that summer to spend more one-on-one time with Phillip. We needed more observation to get an idea of what was going on. We also took Phillip out of daycare and enrolled him in a half-day preschool for the following year. I would only work in the mornings, again so I could try to get a grip on what was happening.

The next year was busy. I was pregnant with my second son and was constantly sick. We bought a house and moved. (Actually, I didn't do much moving. I was too busy throwing up.) I spent every afternoon with Phillip, reading and playing with him.  I called the local school and was able to get a ruling of speech impairment for him. We paid the speech therapist to come to our house, since the schools offered no services before age four.

We consulted with a local child psychologist, who told us Phillip was hyperactive and spoiled, and that I was a weak mother. He was the first of four doctors we would go through before finding the doctors at Ochsner’s Medical Center in New Orleans. Remember this was in 1993, twenty years ago, and autism was considered a rare condition. Most of the doctors had little training or experience with autism.

Phillip was almost six before we got his diagnosis. We spent a week at Ochsner’s Medical Center in New Orleans, having physical, neurological, and emotional testing done. It was an incredibly stressful week, as we struggled to get to each appointment while handling a two year old toddler, and a frightened five year old.

At the end of the week we went to meet with the team doctors who had overseen Phillip’s testing. A kind aide had offered to watch Daniel, our younger son while we talked to the doctors. As we sat in the small white room where doctors delivered unwanted diagnoses to frightened parents, I watched my boy play on the floor as the doctor’s spoke. I looked back and forth from the doctors to my boy, wandering if we were talking about the same boy. My Phillip was smart, already reading and learning math. He just couldn't express himself very well. He just needed some kind of therapy and he would be fine.

The doctors told us Atypical Autism, Pervasive Developmental Disorder, Obsessive/Compulsive Disorder, Expressive Language Disorder, and Functional Retardation.  The whole scene was unreal and difficult to understand. I felt like the floor had fallen away under us. They told us that Phillip would never read; never progress much beyond the level of development he had reached. We left the room holding Phillip’s hand as if he might drift away if we let go.

That night my husband and I knelt beside the hotel bed, watching Phillip sleep. We prayed, pouring out our grief and pain to the Lord. We wept, wandering what was to become of our son, where could we find help for him? And we knew that this could not be the end of Phillip’s story.   

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