Dear Sam: I last wrote you 27 months ago, on the event of your birth. In that letter, I shared some of the lessons I have learned and told you that life brings both joy and suffering.
In these last two years, you have become a child of remarkable beauty and happiness with an astonishing ability to make people smile. You have been blessed by your beauty, your personality and by having parents who are devoted, loving, conscientious and compassionate (which I know first-hand, since my daughter is your mother). I feel great joy when I watch the three of you together.
But to be honest, my greatest joy is about our relationship. The joy I see in your face when you see your “pop” is exactly what I feel in my heart when I see my Sammy. It is a kind of happiness I have never felt before. This mutual affection really all started several months ago at my father’s funeral. Before then, you were not very aware of me. But at the funeral, all you wanted to do was sit on my lap and ride in my wheelchair. It’s almost as though you knew I was in pain and needed your companionship. Since then, whenever we are together, most of your time is on my lap – and we are both happy.
From the day you were born, your mother always described you as “perfect.” It was nice to hear how much she loves you, but secretly I worried. Nobody is perfect and I feared that on the day she discovered you weren’t, she would be terribly disappointed. Both your parents have already suffered enough disappointment and I didn’t want any more for them. Nevertheless, in my effort to be a good father/psychologist, I kept my mouth shut.
My fear became reality well before I expected. When I told you about life bringing both joy and suffering, I had hoped that your first experience of suffering would be the loss of a girlfriend, or failure to make a team in school. I had no idea that you and your parents would suffer greatly before you were even 2 years old.
When you were about 11 months, we noticed that you were not making typical baby sounds and frequently didn’t respond to your parents’ voices. Fearing a hearing impairment, your mother banged some pots behind your head. When you didn’t respond, all of us thought our fears had come true – or worse. When your hearing was tested and found to be normal, we feared you had autism.
Sam, autism is a disease of the brain. Nobody is sure how you get it, but it affects your social skills, language and some of your behaviors. In its most severe form, autism can be associated with mental retardation, lack of speech, behavior that can be out of control, and no social communication. Over the months, our fears intensified as you were still not speaking, and beginning to show some signs of rigid behaviors – symptoms of autism.
We found several experts and had you evaluated. Finally, we took you to see Dr. Andrew Zimmerman, a pediatric neurologist at Johns Hopkins University. After an extensive evaluation, he felt you had something called “Pervasive Developmental Disorder – not otherwise specified.” Recently I asked him what all those words really meant.
“This thing called Pervasive Developmental Disorder is an umbrella term that covers, on one end of the spectrum, classical autism, and on the other end, children with a very mild form of this disorder who have some symptoms from a variety of disorders,” he said. “When I saw Sam, he had most of his problems in the area of expressive language. And this is a fairly classical symptom with children who have PDD, which is what I feel Sam has. Sam also has some other symptoms of autism – some compulsive repetitive behaviors and some rigidity.”
I protested his assessment: “But Sam is as engaging and delightful a child as I have ever seen! Certainly these are not symptoms of autism.”
Zimmerman explained that although Sam has symptoms of autism, he is not autistic. Of course, my main concern was what all this meant for Sam’s future. The doctor could not prognosticate about Sam specifically, but he did say that early detection is critical: “If treatment can be started quite early, the outcome is usually better.” The effectiveness of speech and language therapies has been well-documented, he said, adding that he believes occupational therapy and applied behavioral analysis are also quite helpful. If these children develop language before school age, he added, they can do quite well as adults – even graduating college, living and working independently.
Sam, Dr. Zimmerman was happy to hear that you are receiving all of these therapies and have begun using words to identify important people in your life. But labels and symptoms don’t tell the whole story. There is also the matter of your heart and your soul. I wanted to know how you would experience your world as a result of having PDD. I contacted Dr. Mark Batshaw, a psychiatrist at Children’s National Medical Center in Washington. I asked him if people with PDD understood they were different from other kids. “It is an issue as they grow older,” Batshaw said. “When children reach early adolescence, other kids may discriminate against them.” Although many children with PDD are mentally retarded, those with average or above intelligence will feel the alienation and discrimination aimed at them. He pointed out that a couple of excellent autobiographies have been written by people with high functioning autism – a variation on PDD that could help someone understand what it feels like to have this disability.
So Sam, the road ahead looks like it might be a bit bumpy. Everybody’s heart breaks for what you are going through. And yet I couldn’t wish for better parents for you. They both understand adversity and are not afraid of it. (Your mother, after all, grew up with me, a quadriplegic father.) As you get older, I will tell you how I’ve learned to cope with people staring at me or treating me differently. We can talk about fear, injustice, God, and the tiny little gifts that sometimes live inside of adversity.
And speaking of gifts, I have a story: Several years ago, my friend’s wife had a baby boy. They already had a son who was about 4 years old and all he wanted to do was to spend time alone with his baby brother. At first his parents were hesitant, but the little boy was so insistent that they finally gave in. They peeked through the nursery door as their son ran up to his new brother’s crib and said: “Quick, tell me what the angels look like, I’m starting to forget.”
Even at age 4, you see, most people have started to lose touch with their own spirituality, growing more concerned about beauty, power and achievement. Sam, I have a feeling you will never forget what the angels look like. This disability brings with it a special understanding and appreciation of vulnerability – your own as well as ours. It is the kind of compassion you demonstrated when you climbed on my lap at my father’s funeral.
And I no longer worry when your mother says you are perfect (yes, she still does). Finally, I understand what she means. Your body is not perfect, nor is your brain. She meant your soul. You have a perfect soul.