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Archive for Tuesday, September 5, 2006

Support group brings together those dealing with autism

September 5, 2006

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Richard Horton's son was diagnosed with autism when the boy was 18 months old.

"He wouldn't hug me. He wouldn't speak. That was really devastating," Horton said.

Now in second grade, Horton's son needs a lot of attention and specialized teaching. He can't sit in class more than a couple of hours without becoming distracted. He sometimes echoes what people say to him.

"It's a difficult illness to deal with," Horton said.

That's why Horton was one of nearly 40 people who showed up Thursday night at the Lawrence Public Library, 707 Vt., to attend a meeting of the newly formed Lawrence Autism Society.

Most of those attending were parents of children who have autism. A few were educators and providers of services for those who have autism and their families.

"Thank God for this group, because I always kind of felt like I was alone," Horton said.

Finding resources

Thursday's meeting was the society's third since July, and it drew the most people, said Maria Brockman, who initiated the group.

Amal Latif, of Lawrence, holds her 4-year-old son Yousif as she listens to a group discussion at the Lawrence Autism Society on Thursday at Lawrence Public Library, 707 Vt. Yousif was diagnosed with autism in July 2005. His mother attended the meeting for the first time along with other parents of autistic children.

Amal Latif, of Lawrence, holds her 4-year-old son Yousif as she listens to a group discussion at the Lawrence Autism Society on Thursday at Lawrence Public Library, 707 Vt. Yousif was diagnosed with autism in July 2005. His mother attended the meeting for the first time along with other parents of autistic children.

Brockman moved to Lawrence about a year ago from Maryland. Her now 4-year-old son has been diagnosed with autism.

"I didn't know where to go from there," she said. "I was spending pretty much all my time just getting a number here and a name there. One of the things I wanted to do at the time was come up with a resource packet for other parents."

Autism is a brain disorder that affects a person's ability to communicate, reason and interact with others. Sometimes called a spectrum disorder, it affects people differently, and its degrees of severity vary.

There is no cure for autism, but studies have shown that early intervention can help. A highly structured and specialized education program also can have a positive effect, according to Mayoclinic.com.

It is not clear how many people with autism there are in the Lawrence area, Brockman and others said. The Autism Society of America says one of every 250 babies born will develop some form of autism.

Mike Wasmer, co-founder of the Kansas Coalition for Autism Legislation, speaks Thursday to members of the Lawrence Autism Society at the Lawrence Public Library, 707 Vt. Thursday's meeting was the group's third since July, and it was the biggest crowd so far, with about 40 people attending. The society meets once a month. The next meeting will be at 6 p.m. Sept. 26 at the library.

Mike Wasmer, co-founder of the Kansas Coalition for Autism Legislation, speaks Thursday to members of the Lawrence Autism Society at the Lawrence Public Library, 707 Vt. Thursday's meeting was the group's third since July, and it was the biggest crowd so far, with about 40 people attending. The society meets once a month. The next meeting will be at 6 p.m. Sept. 26 at the library.

Autism is more common than childhood cancer, cystic fibrosis and multiple sclerosis combined, according to the national society.

Lawrence resident Kris Matthews also has a young son who suffers from autism. She says the local autism society has a means for helping provide support for families of those who have members suffering. It also can be a tool for advocacy and a source of information. Knowing about the availability of services is important and not everyone knows about those services, she said.

"They should be available everywhere, but it's a matter of access and infrastructure," Matthews said. "The more resources you have, the more you are able to get. We want to make sure people are connected to as much as they can get."

Lobbying the state

The Lawrence Autism Society wants to work closely with the Kansas Coalition for Autism, Brockman said. KCAL is an independent group of parents, service providers and other professionals advocating for legislation that supports the autism community in Kansas. It was co-founded by Michael Wasmer, who has served on the Kansas Governor's Commission on Autism.

"There is nothing on the books in Topeka that helps our community at all," Wasmer said during an appearance at last week's Lawrence meeting. "We're trying to unify the autism societies' voice."

Among the issues KCAL hopes to bring legislative attention to are providing scholarships to Kansas University students who want to become autism behavior analysts and keep them in the state after graduation, and better insurance coverage for families affected by autism.

The Lawrence Autism Society meets once a month. The next meeting will be 6 p.m. Sept. 26 at the library. Other activities also are being planned, Brockman said.

"I know there are other parents out there," she said.

Comments

irishblues 7 years, 7 months ago

Satchel; Thanks for your understanding! I will try to make the next meeting.

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satchel 7 years, 7 months ago

Irish, You are so right about siblings. I have 2 other boys who are 4 and 2 who are typical. When my 6 year old was diagnosed we dropped everything and life changed with therapists, Speech, o.t., aba consultants/implementors coming in our home 25 hours a week! My husband and I were being trained as well, and all of a sudden, my 14 month old, who is now 4, was kind of shoved to the side. Of course, we gave him attention, but it wasn't the same. Then we had a surprise with our 4th boy who is now 2. Of course, since our 6 year old was doing better at 4, our 2 year old received more attention.

If anything, our 4 year old has been touched by it the most.

I am sure you will see typical kids at these meetings.. My 7 year old who has aspergers is very mild now and he gets along with typcial kids, and other kids with aspergers. He does very well with special needs kids, and is especially attracted to others who have aspergers because if they are 'knowledgable' about stuff, or have a love for science/animals like he does, then he really connects.

My 7 year old has a phenomenal memory, but didn't do things real early except speak like a little professor at age 2! My one with autism had echolalia and I think when he learned to imitate, he imitated his brother who had excellent language skills, so that has helped him.

You should come to the next meeting!

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irishblues 7 years, 7 months ago

Satchel:

You are absolutely right about ABA. My 6 year old nephew has made tremendous strides. He and his sister were in Success by Six for a long time. They proved a tremendous help. A lot of in home therapy, patience and hugs have brought him soooo far!

My heart goes out to you and I rejoice in your triumphs!

Nephew, aka "love of my life" is high functioning and is in public schools. The school sees him as a normal everyday student but provides him with all the help they can give him. He is making great strides everday and is even beginning social interaction! He's been reading since he was two and can add and subtract double digits at 1st grade. I read to him and his sister as much as I can. They absolutley love it and I like to stop at the end of the chapter just to see them beg for more! They are wonderful together.

I have not asked, but what about the siblings of autistic children? I sometimes feel his sister gets brushed aside while the "world" concentrates on him. Will issues such as these be discussed at LAS? Would it help me help them to go to these meetings? I feel like his sister could use some support as well. Not just the parents. What about the extended families?

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satchel 7 years, 7 months ago

We were there at the meeting. We have two boys on the autism spectrum.

The thing I really liked about this group was that is WASN'T depressing. These people want to help their children and although they struggle with some of the nightmare that can come with it, usually people just share and relate to one another, but it is more of: "What can I do to get the best help for my son/daughter".

The schools desire more and more money, yet in most schools they are not meeting the child with autism's needs.

THey won't even allow Behavior consultants to come in and help. ABA is one of the only therapies with data that gives proven results, yet the school may only incorporate one aspect of it. WHY?? ABA therapy is expensive because it works for a high percentage of children. My son with autism went from being severe at 2 years old to being mild/high functioning at 6 years old, and it was because of this aba therapy. He really took to it.

Why would anyone who has a child with autism and has to deal with the daily stress have any energy to deal with a school that won't give the child what he needs. They do what they have to according to their 'testing'. However, the parent knows what their child needs.

My oldest with aspergers was newly diagnosed and the doctor at KU wrote that he needed someone in the classroom who specializes in Aspergers in order to meet his needs. The school doesn't go by what the dr. says. THey tested his cognitive abilities and since he didn't meet the criteria to be in a 'special needs' classroom, he didn't get what the doctor suggested he needs.. WHY?? Because the school doesn't want to foot the bill.

SO.. we had in home therapy with him to help him with his issues.

If your child is high functioning he will fall through the cracks in public school. You have to do intensive in home services for your child to reach his potential.. You can't rely on the school.

We are private schooling them now, and I don't know how my one with autism will do there, but this private school is willing to give him a chance. HE is smart, but still has communicative issues. I don't want to deal with public anymore. They are not willing to give my child the appropriate education he needs to reach his potential.

Insurance DOES NOT cover therapy for kids with AUTISM. Only speech and P.T., but even those are limited per year.. It is looked at as a 'mental condition', not a 'medical condition'.. Although they have proven it is a medical condition of the brain.

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Marion Lynn 7 years, 7 months ago

Uh, just what is this link that appears below this story?

Where the "Autism Toilet Training" appears MOST of the time.

Not all the time and it will disappear upon "Refresh".

http://www.al-khayma.com/Channels?gclid=COHt15DglYcCFQ7BPgodTV9svA

Just curious about the glitch.

Thanks.

Marion.

Thanks.

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