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Brendan's Song:
A Father's Day Story

 

This father shares the happy and painful moments of raising a son who has autism.

By Patrick A. Malone

 
Eternally a Toddler

'Simple Things Count'

Wanting a Miracle at Lourdes

Knocking on God's Door

God's Time Zone

What is Autism?

About seven years ago, when our youngest son, Brendan, was three, he gradually began to lose the gift of speech. Eventually, Brendan became mute, and had developed other unusual behaviors such as clapping his hands, running aimlessly, chewing on himself, suddenly bursting into uncontrolled sobbing or a fit of giggling.

Finally, we were told that Brendan had a severe case of autism. This was a little boy who knew his alphabet at 18 months and spent hours looking at books. My wife, Vicki, and I pursued all sorts of therapies and cures. We even took him to Lourdes in France five years ago. But nothing seemed to help.

We spent a long time grieving about the little boy we lost. Now, we have reconciled ourselves to raising a severely handicapped son who will need lifelong special care.

It is still painful for me to see a youngster chatting happily with his father at McDonald’s or on a subway train. I still have intense dreams where suddenly Brendan begins talking normally as if he had never stopped.

Sometimes, it is very hard for me to watch normal children playing and jabbering with each other because Brendan has no relationship with other children and cannot really play. One of the striking characteristics of autism is an inability to engage in imaginative play.

Brendan spends most of his time alone. That seems to be his preference. Yet he can be quite affectionate, and for that we are very grateful.

He can communicate emotion very well, and he can understand the emotions of others. When voices are raised in our house, as sometimes happens, Brendan gets upset. He reminds us of our need to calm down, get along and love each other.

Brendan has two older brothers, Ian and Chris. They are both very good with him. Chris has even spent summers working in Brendan’s classroom with other autistic children.

My wife is also wonderful with Brendan, who requires a lot of patience. He’s always pulling up plants or making a mess with food or dirtying his pants. Brendan has brought all of us closer together in a mysterious way.

Eternally a Toddler

What do you do with a little boy who is an eternal toddler? Once, years ago, when one of our older boys did something charming at age two or three, I remember thinking, Gosh, wouldn’t it be great if they never grew up, if they were always this innocent and wonderful? I remembered that when a doctor at Johns Hopkins told us, after examining Brendan, that he was functioning at a two-year-old level and may continue to do so.

When that happened, something allowed me to cough up a bitter thought: Be careful what you wish for, because it might come true. But I set it aside and moved on.

What can a parent do with a child like Brendan? Well, as with any two-year-old, you tickle him and play peekaboo. You read him books. You play horsey. You try to make him laugh. And when he does laugh, when he throws his arms around you and sighs with joy, you know that life is sweet. It doesn’t matter that he can’t tell you he’s happy because you can see it and feel it.

It’s important to adjust your expectations, too. When Brendan was first diagnosed, we thought, Well, he’ll just be a little delayed in school, but maybe he’ll catch up by the third or fourth grade. As his silence deepened, we realized he might never go to professional school, or college. But could he do something, someday, to make a contribution?

Now we think that some kind of sheltered work might be the most we can hope for with Brendan. But does it really matter? He doesn’t need to earn his place. He did that when God set him down in our midst. What counts is that he is secure and comfortable and safe, and as happy as we can manage.

'Simple Things Count'

Simple things count the most with a boy like Brendan. S.A.T. scores don’t matter. A really good hot dog slathered in ketchup is the thing he enjoys, or a chocolate shake at the end of a ride on our tandem bike. That’s living!

Brendan has inherited from his parents our love for good eating. Thus, he has no handicap whatsoever in locating and devouring any sweet we have tried to squirrel away for some later time. He seems to be saying, “Let tomorrow take care of itself. Let’s live today!” And his face glows with the biggest smile you’ve ever seen.

Brendan has taught me to take pleasure in the simplest things, to let go of petty grievances, to live for the day. We do worry, of course, about tomorrow. That is the job of parents. What will happen to Brendan when we are gone?

Other issues are of more immediate concern: What will happen if his stormy moods worsen? What if he just gets too big to handle? He chews on his arm sometimes when he is frustrated or when he just needs some stimulation.

Even now, prepuberty, he likes to reach down into his pants and pull on himself. What will it be like in a few years when his child’s mind will inhabit an adult’s body?

Wanting a Miracle at Lourdes

As parents of an autistic child, we have a thousand questions like these. The therapists we take Brendan to listen and nod with sympathy. Words come out of their mouths, but we learned long ago that they don’t know the answers either. Parents have to look somewhere else for answers.

Thus, at the same time we were learning to adjust to Brendan’s disability, I was beginning a spiritual journey to understand and deal with this tragedy.

I was angry with God for a time. We were good Catholics, so I thought. How could we deserve this? How could a fate so cruel befall a little boy, especially one who seemed so innocent and lovable?

When I stood at the shrine at Lourdes, I asked for answers to these questions or for some kind of sign. Better yet, I wanted a miracle that would have Brendan speaking again as if he’d never stopped, just as he did in my dreams.

No voice answered me and no miracle happened. But I did get a feeling of peace and calm.

Knocking on God's Door

Some well-meaning people have told us that God doesn’t deal out challenges that we can’t handle. I would like to believe that, but I’m not always so sure. What about those people who seem crushed by adversity? Did they just not pray enough?

Slowly, very slowly, I have realized that in my incessant “whys” I am a child, too. And I come around full circle from child to parent to child again.

I have puzzled many times over words in the Gospel about fathers and sons. In Luke’s Gospel, Jesus says, “And I tell you, ask and you will receive; seek and you will find; knock and the door will be opened to you. For everyone who asks, receives; and the one who seeks, finds; and to the one who knocks, the door will be opened. What father among you would hand his son a snake when he asks for a fish? Or hand him a scorpion when he asks for an egg? If you then, who are wicked, know how to give good gifts to your children, how much more will the Father in heaven give the holy Spirit to those who ask him?” (11:9-13)

Thus, I have prayed many times to God: “O.K., I’m asking, God. I’m seeking, Lord. I’m knocking on your door. Open up, Lord. Let the little boy talk. Remove these unclean spirits that tie his tongue.”

And when I have looked around me, I have seen so many other parents struggling to help their children who have cancer or cerebral palsy, or another problem that’s less devastating. Their faith is tested, too.

A great river of suffering flows through life on earth. What does it all mean?

God's Time Zone

When we were kids and took family trips, we sat in the backseat of the family car and asked over and over, “When are we gonna get there, Daddy?”

Dad always replied, “Soon.”

I think God sees us as that way and has the same response: “Soon.”

But God’s time and my time are not the same, just as a parent’s time and a child’s time are not the same. God reminds us to hush and look at the birds in the sky, the lilies in the field. They soar in splendor, they are robed in majesty. Do we really doubt that God will provide for us?

God had a very good reason for telling us to become like little children. Just as God sent Brendan to our family, he sent Jesus to us as an innocent child.

When Jesus became a man, he climbed up on the cross to show us the way. He even asked, “My God, my God, why have you forsaken me?” (Matthew 27:46)

Suffering is a necessary part of life. But after suffering there is life eternal. That is God’s promise. That is our firm belief.

Thus, we fathers take up our crosses and we struggle through life. We stumble and despair. But we smile and keep going because we know, through Christ’s suffering and resurrection, that there is a promise and a hope.

Brendan will speak to me one day. It may not happen in this life. But, by God’s measure of time, it will happen soon, very soon.


Patrick A. Malone is a lawyer in Washington, D.C., who represents injured people in medical malpractice and product liability suits.

 

What is Autism?

Autism is a complex and mysterious neurological disorder. It was first identified in the 1940’s. One in every 500 to 1,000 persons has autism. This makes it the third most prevalent developmental disability, more common than Down syndrome.

There is no known cause or cure for autism. There is no recognized treatment that is consistently effective, although parents try everything from allergy shots to behavior modification to help their children.

But the disease presents a spectrum of disability. The highest-functioning autistic persons, those with what is known as Asperger’s Syndrome (AS), have normal intelligence, even areas of high function, but markedly impaired social and communication skills. Dustin Hoffman’s character in the movie Rain Man was like that.

When Brendan was first diagnosed at age three with “pervasive developmental disorder,” the umbrella term for autism and related disorders, we had hoped he would be in the AS category. But as his normal behaviors disappeared over the years, we realized that was not to be.

Autism affects language. It also affects skills—communicative, emotional, cognitive, behavioral, in addition to fine- and gross-motor skills.

While there is no specific treatment for autism, drugs can help to calm the mood swings that come with the disease. And behavioral therapies sometimes can teach basic skills to autistic persons. Sometimes very intense behavior modification has worked near miracles. A book that thrilled us was Let Me Hear Your Voice: A Family’s Triumph Over Autism, by Catherine Maurice. Unfortunately, her method didn’t work for Brendan.

Autistic children look normal, but they usually seem withdrawn into their own world. They can be very affectionate, however, as Brendan is at times. Usually, they are unable to speak and communicate, relate to others, learn or understand the nuances of human interaction.

Children with autism typically do not develop creative or imaginative play. They exhibit repetitive body movements: Brendan flaps his hands and taps on objects. They sometimes are highly resistant to change and insist on precise routines. Sometimes they are very sensitive to certain sounds, smells or touches. They seem to have a high pain threshold and will even bite themselves (as Brendan does) for self-stimulation.

Individuals with autism must be painstakingly taught everything they know. Most will require lifelong supervision and care from their parents, siblings, other caregivers or state agencies.

Years ago, parents were blamed when their children developed autism, usually during the first three years of life (as happened with Brendan). Now autism is thought to be based on abnormal development of the brain.

Autism affects people throughout the world. It observes no racial, ethnic or socioeconomic barriers.

For more information, contact the following organizations:

  • National Alliance for Autism Research, phone 888-777-NAAR, Web site: www.naar.org;
  • Autism Society of America, phone 800-3AUTISM, ext. 150, Web site: www.autism-society.org.

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