Hesham Khater lives in a white brick, suburban-style house with red shingles amid manicured gardens and beds of blowing leaves.

It looks like a typical family house in any affluent neighborhood of Syracuse.

As the loose screen door swings open, the living room appears with family portraits overlooking the Persian rug and overstuffed couches. Sitting on the couch are Mohamed Khater, his wife Magda Bayoumi and their oldest son Hesham.

Hesham is autistic.

His mouth open, Hesham stares vacantly into space. His two younger brothers, Ashraf and Ahmed watch him type on a small computer with the help of his mother as she gently guides his right wrist.

This is how he communicates. Hesham cannot speak. An empty gaze and a frozen grin accompany each movement he attempts.

But for his parents, both Syracuse University alumni, it is important he stays active and continues to learn.

Hesham graduated from Syracuse’s Corcoran High School in 2005, his father said pointing proudly at the graduation picture on a nearby table.

Hesham started taking classes at SU last fall. But he wasn’t able to continue this semester because he and his family have yet to find someone to help him get around campus every day.

‘I need to go back to school,’ Hesham writes on his computer. ‘Please find someone for me.’

As difficult as autism can be, Hesham and his family have something that lightens the load: faith.

‘Our faith is bigger than the pain,’ Mohamed said.

Hardship, Mohamed added, is a test from God.

The truth, he said, is no training could have prepared his wife and sons for the struggle with autism he’s faced, but their faith took on an extra dimension after Hesham was diagnosed with autism.

‘We always had faith as Muslims,’ Mohamed said. ‘It’s coming from Allah. Everything happens for a reason.

‘I told (Magda) we must accept what Allah gives us. God is testing us with this. Instead of saying, ‘Why us?’ We have to say ‘Hamdulillah,’ thank God, because everything that comes from God is good. It’s hard on him, because people don’t think he’s intelligent.’

As his father spoke, Hesham’s eyes filled with tears. And as he rocked his body with frustration and gasped for breath, Mohamed rubbed Hesham’s back gently.

Suddenly, Hesham got up and nervously paced the flour, gasping, with a helpless grin on his face. Eventually, he crawled back between his parents onto the couch.

‘What’s wrong, Hesham?’ his father asked in a tender voice.

The son looked away, and before his tears could spill, he buried his face in his father’s white shirt. Absorbing his son’s muffled cries, the father closed his eyes and whispered something in his ear.

Finally, Hesham mopped his face with the palm of his hands and let out a long sigh.

‘I am not human to them,’ Hesham typed. ‘I hate the feeling.’

For a while father and son sat there, holding each other tightly.

‘It’s just hard,’ Hesham typed as he broke into tears again. ‘I don’t like to have people to feel afraid from me.’

****

Autism is a complex developmental brain disorder, said Dr. Larry Novak, Hesham’s family doctor.

The disorder falls under a range of syndromes called pervasive developmental disorders, more commonly referred to today as Autism Spectrum Disorder.

Other disorders under ASD are Asperger’s, Rett Syndrome and Childhood Disintegrative Disorder. Novak said progresses have been made in the treatment of autism.

Cheli Paetow is a special education teacher who has been working with Hesham for eight years.

Who Hesham really is, Paetow said, only comes out with people who assume he is competent.

‘Instead people judge him based on a body he cannot manage.’

Beneath his mask, she said, there is a lively soul.

‘He is an exceptional individual,’ Paetow said. ‘He does as much for my life as I do for him.’

Still, Paetow said the findings have proved to be relatively small gains, and the fact is many aspects of autism remain a mystery.

Judging by the wide array of people who fall under the diagnosis, autism is one of the most complicated neurological disorders known, Novak said.

Some diagnosed with autism, like James Burke, a third-year student in the College of Human Ecology, are college educated. He has amassed more than 46 credit hours and has ‘a lovely 3.4 GPA,’ Burke said.

Others, like Hesham, can’t speak, let alone sustain their attention long enough to do a task for more than a few moments.

There are thousands of autistic people throughout the country aided by facilitated communication, said Douglas Biklen, dean of SU’s School of Education and leading facilitated communications advocate. He helped promote the method in the United States in 1992.

The long-term goal of this training is to fade physical support and eventually enable independent typing, said Marilyn Chadwick, an assistant director at the Facilitated Communication Institute in Syracuse.

The process can be grueling for the patient and his or her family, Chadwick said.

Still they deserve consideration, Hesham’s mother Magda said.

Throughout New York state, parents like Mohamed and Magda and educators like Paetow are pushing for research. They are also working to change laws affecting people with disabilities throughout New York.

The struggle of the Khater family is all too familiar to many families across the country.

Estimates of American children with an autism disorder in the United States alone run as high as one in every 150, and one in 94 boys, according to the Centers for Disease Control and Prevention. And autism is growing at a rate of 10 to 17 percent each year, making it more common than pediatric cancer, diabetes and AIDS combined, according to the Autism Speaks Web site and statistics from the U.S. Department of Education.

‘There is still a general lack of awareness,’ Paetow said. ‘People with autism are so smart.’

During their instructional sessions, Paetow said Hesham often typed the things he wants to write about: autism, Islamic politics and keeping Jerusalem a sacred and peaceful place.

‘(Hesham) is a humanitarian,’ Paetow said.

But Hesham has a number of goals besides writing.

‘He really wants to be independent,’ Magda said. ‘He wants to fully participate in the community. He wants to be a consultant for autistic kids. He wants to be a normal citizen of this community.’

****

Magda said Mohamed first noticed the changes in Hesham’s behavior when he was between 2 and 3 years old. He’d heard a colleague talking about her autistic nephew. Some of the changes she mentioned about her nephew, Mohamed saw in his son as well.

‘I had never heard about it (autism),’ Magda said.

One day, Mohamed went to the library, brought home a book about autism and said Hesham had all the characteristics, Magda said.

Magda couldn’t believe it at first. But soon after, she, too, started to notice changes in Hesham.

‘He used to say a few words,’ she said. ‘He stopped talking. He used to run to greet me when I got home from work, but now he just stood there doing whatever.’

Eventually, Mohamed said Hesham started to develop classic autism symptoms: impaired communication and social skills, such as delay and eventually total lack of spoken language, and restricted and repetitive behavior such as flapping of the hands.

Now a stay-at-home mother, Magda said she dropped her job as an assistant manager at a retail store to take care of Hesham full time in an effort to ensure his life continues as normally as possible.

Soon after his parents noticed changes, in 1989, neurologists at the Institute for Basic Research in Developmental Disabilities in Staten Island, N.Y., confirmed Hesham’s autism. Magda almost found the news unbearable; she said she felt caught in a very bad dream.

She spent the next two to three months holding Hesham, because the neurologists predicted he wouldn’t recognize her eventually.

‘We were glued together,’ she said. ‘I didn’t want him to forget me.’

Magda said she felt tired all over a number of times.

‘Mohamed was working long hours,’ she said. ‘I was overwhelmed.’

One day, when Hesham was 8 years old, he ran away.

‘I was nine months pregnant,’ Magda said. ‘Hesham used to run away as soon as we turned our backs. That day Mohamed fell asleep,’ Magda said, laughing. ‘The baby was due in four days, and Mohamed insisted that I stayed home and rest up while he went looking for Hesham.’

Ignoring her husband’s plea, she dragged herself miles away from their neighborhood and up and down East Genesee Street, searching for her son. She finally found him wandering, barefoot, at the corner of East Genesee Street and Brookford Road.

She draped her body over him, pressing his head against her pregnant belly. Two hours later, she was in labor at Crouse Hospital.

Magda said she sometimes locked herself in the shower to wrestle with her feelings. Sometimes she found herself crying quietly in the dark. ‘But most of the time I prayed, read the Quran,’ she said.

Hesham’s parents said their son has been written off as profoundly retarded by some specialists. She said some even dismissed him as a hopeless case, and in the words of an evaluating neurologist in Queens, N.Y., said he had ‘little hope for improvement.’

‘It’s almost as if they were saying ‘dump him, take care of Ashraf and Ahmed, have another child and go on with your life. Forget about him, he is not going to know who you are.’ This is how it’s going to be in the future,’ she said.

‘They only talked to me,’ Magda said. ‘They wouldn’t even look at him. He is a human being.’

At that time, some specialists advised Magda and Mohamed to put Hesham in a special-need institution. Magda said the idea overwhelmed her. This would have meant abandoning their attempt to help him reach some degree of autonomy. But she knew that if Hesham’s condition did not improve soon, they might have to consider it.

Mohamed and Magda couldn’t bring themselves to place Hesham in a special-need institution.

‘I’ll die before I put my child there,’ Magda said.

Instead the family left Queens for Syracuse in the early ’90s to find better help.

‘The city school system (in Central New York) was known for servicing and integrating kids with disabilities,’ Mohamed said.

Hesham’s parents were determined that their son would become autonomous one day. They enrolled him at Syracuse’s Jowonio School in 1992.

The Jowonio School operates as an inclusive preschool in which children with and without special needs learn in the same classrooms, said school director Ellen Barnes.

Hesham thrived in the inclusive classrooms at Jowonio, Barnes said. During that time, Magda said, she noticed significant improvement for Hesham, ‘especially communication and social skills.’

‘They (the people at Jowonio) were my extended family,’ Magda said. ‘Still are.’

****

Before moving to Syracuse, Magda said she often felt alone. She felt she had failed. She tried to tell herself she did everything she could. But sometimes, Mohamed said, they can’t help but to blame themselves.

‘The guilt is overwhelming,’ Magda agreed. Her voice broke, her eyes welled up with tears. ‘Maybe we could have spoken to him more, maybe we didn’t spend enough time with him. I don’t know.’

‘It’s not their fault. They’ve certainly done everything they can do to create a world where Hesham can express himself,’ Barnes said.

And at times she was completely overwhelmed with feelings of helplessness, anger and guilt.

One day, Magda said she was watching Hesham play with his cousins. ‘(That’s when) I broke,’ she says. ‘I got angry with God. I asked God, ‘Why me? I was praying for you, fasting for you, doing everything for you. My sister never prays, and you give her beautiful children. Why do you give me this?”

‘God said to me, ‘It’s because Hesham needs a strong mother.”

That day, the day God spoke to her, Magda said she understood that Hesham was a blessing, a gift from God.

As she spoke, she put her hand around Hesham. His body fell onto her, she pressed her lips against his head. On his other side, Mohamed leaned closer and put his hand on Hesham’s shoulder.

‘She is a strong woman,’ her husband agreed, citing verse 286 of the second chapter of the Quran: ‘God said, ‘On no soul does Allah place a burden greater than it can bear.”

****

Hesham’s autism has not only affected his parents, but also Hesham’s brothers.

One night, Magda recalled, she was in bed, ill, and her 2-month-old Ahmed was crying. Ashraf, who was then 5 years old, hunched over the toddler’s crib and said: ‘Stop crying. My mom has a headache, I’m already taking care of Hesham, and I can’t take care of both of you.’ Magda laughed at the memory.

The funny thing, she said, was ‘Ashraf wasn’t really taking care of anyone. If anything, he was giving me the hardest times,’ she chuckled. ‘But here you have this 5-year-old boy talking to a 2-month-old baby, telling him to stop crying, because he had to take care of his 7-year-old brother.’

Magda said the incident made her realize that maybe Ashraf felt he had to grow faster, that he had to take some of the pressure, too.

‘I didn’t even want him to think of something like that,’ Magda said, running her hand alongside Ashraf’s back.

Every night Ashraf spends minutes brushing Hesham’s teeth, a finger in his older brother’s mouth to prevent him for swallowing the toothpaste. For such a seemingly simple task, there are hundreds of ways to get it wrong, Ashraf said.

In fact, he said, his brother’s autism dominates the family’s simple routines – walks around the neighborhood after dinner, grocery shopping, dinnertime, bedtime, etc.

Unfailingly polite, Ashraf endured strangers’ disrespectful comments about Hesham.

”What’s wrong with your brother?’ ‘Is he crazy?’ ‘Your brother is stupid.”

They were insensitive and unabashed, but Ashraf never lost his temper.

‘I don’t get mad at these people,’ Ashraf said. ‘I just explain them (Hesham’s situation).’

Family friend Tom Ligoci said Ashraf sees his brother as another normal person.

‘Ashraf sees his brother as an extension of who is,’ he said. ‘I think sometimes he looks at Hesham and says ‘that could be me.”

Hesham and Ashraf do everything and go everywhere together: to the park, to play basketball, to the beach, to a picnic or simply down the street.

‘I never felt like I don’t want to take Hesham anywhere,’ he said. ‘Even with all the noise he makes, it’s always good to have him around.’

He fell silent for a moment.

‘I think about the future with him,’ Ashraf said. ‘(When my parents get older), how independent will he be from me and my little brother? Will he have to live with me or live on his own?’

He paused.

‘I think he won’t be able to live on his own.’

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Published on October 20, 2008 at 12:00 pm