Tuesday, May 27, 2008

An autism mom

Son’s special need creates a bond tested by challenge, forged in love

Lisa Simone knew her son was different, but she didn’t know why. Jonathan didn’t talk. Jonathan didn’t follow directions. He didn’t recognize names. And worse: Jonathan hurt other kids for no apparent reason. He hit them and kicked them and butted them with his head.

If she left Jonathan alone in his room, he would rip up books, tear the sheets off his bed and toss everything out of the dresser.

She tried techniques other parents try: time-out, consequences, even an occasional spanking. Nothing worked.

What was she doing wrong?

His behavior had turned so horrid by the time he was 18 months old, Lisa hated taking him anywhere.

And worse: She wondered why she ever became a mother.

Motherhood, Lisa discovered, sometimes bears little resemblance to the pictures on Hallmark cards. She had imagined happy days filled with birthday parties, play dates and family game nights, trips to the park and vacations to Walt Disney World and to “Sesame Street Live.”

She had quit her job as a paralegal to devote herself to her new baby. She enrolled him in gymnastics, playgroups, swimming lessons and music classes. She bought passes to Carowinds, Discovery Place and the Nature Museum.

But Jonathan was a fussy baby who grew into an uncontrollable little boy, and she worried that one day he might end up in jail.

“I was not doing anything different than what other mothers were doing,” she said, “but he responded differently from the way their children responded.”

Lisa blamed herself. What was wrong? When other mothers in their playgroup became pregnant again, Lisa’s despair grew. They were ready for more children, and Lisa still couldn’t control her first child.

She confided in her friend Arlene Crandall after a baby shower one night, talking with her in the street for over an hour, rehashing everything, trying to figure out what she was doing wrong.

Every day with Jonathan was a battle.

Every day Lisa asked herself why she became a mother.

Every day she wondered if she could make it through another.

Arlene sensed Lisa’s despair and, though friends warned her not to interfere, she told Lisa about a place in Charlotte, N. C., called the Carlton Watkins Center, where children with developmental delays are evaluated.

It would take five years before a final diagnosis, but that evaluation was the start of Lisa’s journey away from hopelessness.

“I’m always telling people now to get it checked out,” Lisa said. “The best thing they can tell you is that it’s nothing. If it is something, you can start working on it.”

For Jonathan, it’s autism.

In August 2006, after six years of therapy and hard work, 9-year-old Jonathan Simone stood behind a lectern, facing about 100 people at a luncheon for the Autism Speaks advocacy group, and he read a speech he wrote about himself:

“When I was 8 years old I discovered that I have autism. I was pretty afraid because autism makes people’s lives hard. Mom told me that my autism makes me smart and then I wasn’t afraid anymore.”

Jonathan listed some advantages he has because of his autism, which is a neurological disorder that affects social interaction. First is his great vocabulary. “I know words that other kids my age don’t understand. This can be a problem too, because one time in second grade one of my fellow students said, ‘Happy Morning.’ I didn’t like mornings because I got woken up so early, so I said, ‘The mother of all oxymorons.’

“Nobody understood me. Everyone thought I was calling everyone a moron. My teacher said I was in trouble because I called everyone a moron, but everyone was wrong. Later I explained what happened and then I wasn’t in trouble.”

Jonathan said he’s also a good thinker, and is good at math, computers and reading. He has a great memory, and is good at telling jokes.

“And now for my difficulties: Mom says when I was little, I couldn’t talk, and I used to hurt the kids I was around. (One difficulty can lead to another.) I used to ignore people who were talking to me. Then I started going to therapy.”

Lisa and her husband, Vinny, spent many tens of thousands of dollars on therapy. They enrolled Jonathan in a special-needs preschool, and Lisa worked with him at home, grueling hours filled with his tantrums and her tears. She searched the Internet and read books, and contacted different agencies.

Over time, Jonathan’s symptoms improved.

“Now I go to a regular school, but I still have challenges,” he said in his speech. “Sometimes I still have trouble following directions. When my schedule at school changes and nobody warns me, I get mad and I begin to shout and then I get in trouble. I prefer the usual schedule.”

Before Jonathan finished his speech, Lisa was weeping, this time tears of joy.

“Every time he accomplishes something that we had no idea he would be able to accomplish, I feel very fortunate,” she said. “He is so insightful and observant, he surprises me a lot.”

Her friend Arlene describes Lisa as “the most remarkable person. She just keeps on trucking no matter how bad it gets.”

Or how much it costs, said Vinny. “If we have to give up vacation to pay for therapy, so be it. If she wasn’t like that, Jonathan wouldn’t be where he is today.”

Today, Jonathan is in fourth grade at Davidson Day School. He is doing so well that Lisa, who is 39, has time again for herself.

After all her struggles with Jonathan, you might think she would take a break. Instead, she took a job last year as a teacher’s assistant in a special- needs classroom at a public school, and is using the knowledge she gained from raising her son to help other children.

“I was so lucky to have wonderful teachers in his life that I enjoy being a part of these kids’ lives,” she said. “Sometimes people see their deficiencies, but they have gifts that will just blow you away.”

Like Jonathan’s creativity. His humor. His hugs and kisses. “I wouldn’t change him,” Lisa said. “I would

make things easier for him and some things easier for us, but that’s all.”

Some days being Jonathan’s mother can still be tough.

But the tough days no longer come at Lisa one after the other. She’s able to put her challenges into perspective. Jonathan is an easy child compared to the child he once was. Lisa’s biggest challenge is forcing him into social situations.

“We are in a good, good place, which is not to say that I never feel despair,” she said. “But I can’t say it’s different from what any other parent feels. I’m sure all parents have concerns.”

For some mothers, it may be drugs. For others, attention deficit disorder.

For Lisa, it happens to be autism. “I am such a better mother because of it,” she

said. “Oh my God, I’m such a better person. People will tell me that I have so much patience and my husband, who knew me pre-Jonathan, looks at me and laughs and says, ‘You?’

“Even though we don’t do the stuff I wanted to do together — like board games and hockey games or going to the movies — he’s my constant companion. If he has to hang out with anybody, it would be me. He’s like my little best friend.”

Asked to talk about his mother, Jonathan, who is now 10, said in his formal, almost professorial way of speaking:

“She’s a good mom. “She’s after my health. “She gets my flu shots. “She makes sure I eat healthy and she brings

me to school every morning. “She works hard, but she doesn’t help me on

my homework.”

Then he admitted: “Sometimes your child can

be hard to handle. One time when I was 3, I was angry and I peed on her on purpose.”

He switched topics abruptly, the way he sometimes does, and talked about his dogs, Tobi and Oreo, before announcing: “It’s a strange world we live in. They can put a man on the moon, but they can’t put a decent taste in medicine.”

Jonathan stood up. He had nothing more he wanted to say. He was finished talking, ready to do something else. He wrapped his arms around Lisa, and she kissed him on the forehead.

1 comment:

Brooke said...

Lisa,
You are an inspriation to me, thank you for sharing your story! I have worked in the field of autism for 6 yrs, they are my passion, and I strive to do what's best for the lives of these children, thank you for doing the same! Keep up the great work at home and at work!
God Bless
Brooke