| 4/17/2008 3:00:00 PM | Email this article • Print this article |
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| “You have to focus on your child and look at making progress. Span yourself out. Look at progress for a week, a month, a year. Don’t look for daily accomplishments.”
- Bill Lewis speaking
about life with his
autistic son Noah (Staff photo by Ken Ritchie) |
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| Noah Lewis enjoys time with his sister, Emily. (Staff photo by Ken Ritchie) |
| | Learn more... | On Saturday, Melanie Lewis will host a women's tea and silent auction to raise awareness and funding for the disorder that has consumed her life and her family.
The event is planned from 1 to 3 p.m. Saturday, April 19, at the First Baptist Church in Carrollton, Ky. The tea will include baked goods such as, cakes, brownies and fudge. She also has 100 tea bag holders and 100 pairs of earrings, which Lewis' husband made, for the tea.
In addition to the food and beverage portion of the event, Lewis has collected gift certificates and coupons from area businesses to use in the silent auction.
She will also be selling Michala's bracelets.
"I feel like God wanted me to do it," Lewis said.
The proceeds from the fundraiser will go toward Riggle's plan to build an autism center in Louisville.
For more information on Lewis' event or to make a donation, call Lewis at (502) 732-8396.
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Life with Noah
Carrollton family learns much from autistic son
Sara Denhart
Courier Staff Writer
When Melanie and Bill Lewis had their second child, Noah, they had the same dreams most parents have for their child - to be healthy, happy and successful. The Carrollton, Ky., family thought they had all those bases covered as they took their new son home for the first time.
"As a parent, you aren't given any survival guide," Melanie Lewis said.
Noah behaved as any normal newborn would. He ate, slept, cried, cooed, created smelly diapers and repeated that cycle. It was not until he was a toddler that the Lewises started to see that all their dreams for their little boy might not be the way they had planned.
"At 4 years old, the red flags were flying," Lewis said. "Looking back, at 2 1/2 we could tell something was wrong."
The problem with Noah was that he would not make direct eye contact, he wanted a routine and he was happy when things were the same. He also had problems potty training.
The Lewises took their youngest child to the pediatrician. At the doctor's office the family learned something that would forever change their lives. Noah was diagnosed with autism.
Autism is a brain development disorder that impairs social interaction and communication. The disorder manifests itself in restricted and repetitive behavior, which can be seen before a child is 3. The disorder ranges from high-functioning autism, which is known as Asperger syndrome, to milder autism disorders.
Noah, who is now 12, is high-functioning, and is mainstreamed, meaning that he participates with his peers at school.
Before attending school, he was in speech therapy classes, Head Start programs and special-education classes. Now, he attends regular classes with students at Carroll County Middle School.
"A lot of kids cannot be mainstreamed," Melanie Lewis said.
Even though Noah participates in regular classes with his peers, he is different from other students without autism. He has developed a sharp sense of memory, like a tape recorder, Lewis said. Noah can tell you all the Disney movies he has seen, the previews before the movie and what year the movie was released. However, he tends to tell his family about his knowledge over and over again.
"He feels it is important to tell us," Lewis said.
In addition to sharp memory skills, Noah likes to draw to relax. He does not necessarily excel at art and music like many children with autism do, but he does enjoy drawing, Lewis said.
While Noah is high-functioning, his future as an adult seems cloudy. Many daily things most people take for granted, such as balancing a checkbook, being able to sustain a marriage or taking care of yourself, are challenges for people with autism.
"It doesn't come easily for them," Lewis said. "We have to work with eye contact today."
Because autism plateaus on different levels for people, many autistic people will need continued care through adulthood. Lewis said her son will likely always need sideline assistance.
However, some people with Asperger syndrome will be able to do more things than people with spectrum disorders. People with Asperger syndrome have the option of higher education available to them.
Marshall University in West Virginia offers college programs for people with Asperger syndrome.
Each day, autistic students attend two classes for 50 minutes, and the rest of the day is spent on campus. The university has graduate students who work daily with the students in its Asperger program. The graduate students help the Asperger students with their homework and social interactions. The Asperger students also attend weekly life-skills meetings.
Other schools, such as Western Kentucky University, University of Connecticut, Georgia State University and Daemon College in Buffalo, N.Y., have similar programs to help students with Asperger syndrome.
Living with an autistic child can change the family dynamic. So much of the parents' time is focused on the child, it leaves little time and energy to spend with the other children or together as a couple.
"It hasn't mine, but it can put a strain on marriages," Lewis said.
Because autism can become consuming, parents and siblings of autistic children become impassioned about finding out more about the mysterious disorder and raising awareness.
"To say I'm passionate about autism is an understatement," Lewis said.
Autism affects many parts of the brain, but how it occurs is poorly understood. No cure has been found to heal children diagnosed with autism.
Some parents believe childhood vaccines might be a cause of autism. The measles/mumps/rubella vaccine is suspected of causing autism because some vaccinations contain toxic mercury. The amount of mercury in the blood causes the brain alteration, theorists say.
Lewis ascribes to the vaccination theory. However, she has not had Noah's blood tested for mercury levels.
"I can go back and look at baby pictures and see a difference," Lewis said. "My husband doesn't believe it."
As for a cure, a new experimental treatment is being researched at Kosair Children's Hospital and University Hospital in Louisville, Ky. A 7-year-old Louisville autistic boy named Evan Riggle received glutathione intravenously at the children's hospital.
Glutathione is an amino acid that neutralizes harmful molecules. It helps recipients boost their own natural glutathione production and reduces oxidative stress, making the body less combative.
The glutathione treatments are advocated for patients with Alzheimer's, dementia, stroke and other brain-related disorders.
Riggle had a dramatic improvement in his quality of life after the treatment. The treatments can reduce aggression in children with autism and improve their interpersonal, socialization and verbalization skills.
The boy's older sister, Michala, saw the change in her brother and wanted other autistic children to have the same opportunity her brother had.
Michala, 10, began her quest to raise money for research in Louisville. Hospital officials told her it would cost at least $200,000 to start researching the glutathione treatments and its effects on 50 autistic children.
Riggle began doing the one thing she knew how to do well - creating bracelets. She walked around selling beaded bracelets to raise money for the research. Soon, family and friends began selling the bracelets at local events and raised about $1,000.
Then, Riggle was notified that a private donor provided a check of $100,000 to her cause. The money was from the Ephraim and Wilma Shaw Roseman Foundation.
Riggle has raised about $200,000 in six months, Lewis said. And, Riggle has set her sights on a bigger project - an autism center in Louisville. The center, which would cost about $300 million, would allow families with autistic children to meet one another, get diagnosed, go through speech therapy and provide for other needs.
"(Riggle) takes it back to the 12-year-old boy, the fishes-and-the-loaf parable in the Bible," Lewis said.
Lewis has put Noah on that waiting list to be one of the 50 children tested and treated with glutathione. She is awaiting notification from the Louisville hospitals. She said the hospitals are still working on getting the research criteria approved to begin the study.
Other Kentucky residents affected by siblings with autism are working to bring more awareness about the disorder.
Oldham County, Ky., teenager Natalie Pope has been working on a project to create a license plate that supports autism research. Pope, who was a senior Girl Scout and has a younger brother with autism, began her project after seeing Kentucky license plates that support breast cancer awareness.
She started the project to earn her Girl Scout Gold Award, which is the highest achievement a teen Girl Scout can achieve. The heart of the project was to find a cure for her brother and others who suffer from autism.
In order to get the colorful, puzzle-pieces image on Kentucky license plates, Pope had to pre-sell 900 license plates for $28 each. The puzzle pieces design is a national symbol for autism.
By the time World Autism Awareness Day was observed this month, Pope had reached her pre-sell goal and was able to move the project forward.
The Department of Motor Vehicles in Frankfort, Ky., will spend about three months to create the license plates and make them available at local county clerk offices throughout the Commonwealth.
After seeing what Pope had done, Lewis wrote a letter to the editor of a local newspaper to gain support of the license plates. However, the letter was not enough for Lewis.
"When doing this, I thought of Natalie," Lewis said. "The best thing to do is to give."
With a strong spiritual conviction to do something to bring awareness in her community, Lewis decided to do a fundraising event.
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Reader Comments
Posted: Saturday, April 19, 2008
Article comment by:
Mary Canales Samora
To parents with loved ones with autism; looking to increase Glutathione levels.
It is pointless to purchase supplements that merely contain glutathione, because the digestive system breaks down ingested glutathione and it will not be absorbed into your system. On the other hand, MAXGXL provides the proper nutrients needed to promote the body's own ability to manufacture and absorb glutathione.
. MAXGXL is also available with out a prescription thought a distributor, and i will be happy to send you a free sample of MAXGXL visit my web site for more information .
To better health, Mary Samora(361)676-1268 www.betterlivingwithmax.com
Posted: Friday, April 18, 2008
Article comment by:
KRISTEN PECK
I would like to take the time to make a correction in the named article. Noah, like my 13 yr old son,Bobby, are not autistic children. They are children with autism. What's the difference? Our children always have been and always will be children first, before the autism came into the picture!!!! They need to be recognized as a child first. Not by the autism first. It came to us...we didn't ask for it!!!
Posted: Thursday, April 17, 2008
Article comment by:
Karen O'Handley
To the Lewises and other interested parents of children with autism:
While waiting on the list for the program that will provide glutathione intraveneously, you can help build glutathione levels in your child by feeding the child a supplement called IMMUNOCAL. It is currently being used in a study about autism, at UT Southwestern Medical Center in Dallas. It is listed in the PDR and the Pharmacist's Redbook. It has coverage through Medicare and Medicaid for certain conditions. And it is available without a prescription through a distributor, so I am happy to provide wholesale pricing to anyone interested. Feel free to visit my website or give me a call for more info.
Warm Regards,
Karen O'Handley
(760) 940-9022
www.immunotec.com/KarenO
karenohandley@cox.net
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