Mothers of children with autism offer more than love

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MUNCIE, Ind. (AP) — A scar twists along Christine Weida's left forearm. She has it covered with the sleeve of a white sweater.

The scar is the only physical reminder of six years ago, how all of her organs were shutting down. How she spent weeks in the hospital. And how it was all caused by her son.

Jacob was 12 and was sitting next to his mother while she sewed. He has autism, and is considered to be a more severe case. He is nonverbal, so he struggles to communicate, and sometimes he can't manage his anger. That day he was hungry, and was trying to get his mother's attention. She told him to hang on and was about to put down her sewing when Jacob grabbed her arm and bit it.

It was a small bite, barely breaking the skin, but unfortunately Jacob is a carrier of the strep virus, so it was enough to give Christine streptococcus toxic shock syndrome.

Christine and her husband, Mike, considered moving Jacob to a group home but decided against it in the end.

"You have to love him anyway," Christine said. She's more than his mother; she's his protector and number-one advocate.

Jacob is now 18, more than 6 feet tall and attending Central High School — where he is allowed to attend until age 22 — and is a loving, friendly guy. He still has some aggressively angry moments, but Christine said he hasn't had any problems this year. She still helps him get dressed in the morning and bathe at night.

Taking care of Jacob can be overwhelming at times, and Christine has two more kids who both are diagnosed on the autism spectrum, too.

Violet is 10 and just applied to be in the Gifted and Talented program at East Washington Academy. She's a little shy, the tallest girl on the basketball team and has a role in the school play. Some day she plans to go to college. She doesn't tell people she has been diagnosed on the autism spectrum, and they are usually surprised to find out.

That's because autism isn't a physical condition. Violet has a mild case, but she does deal with the added anxieties and compulsive behavior.

Eleana, 9, falls somewhere in between Violet and Jacob, Christine said. She started to speak on her own and started therapy last month along with her special education class at East Washington Academy. She likes crafts and singing, but only by herself.

Having a child with autism isn't uncommon, The Centers for Disease Control and Prevention reports one in every 68 children is identified with autism spectrum disorder. But it is uncommon to have two girls with autism. Only one in 189 girls has autism, compared with one in 42 boys, according to the CDC.

Christine knew there was a heightened chance of having another child with autism, since she already had one, but she had remarried since Jacob was born and doctors told her the chance was pretty low.

She saw the signs of autism soon after the girls were born. Violet would flap her arms and missed developmental milestones like speaking. And the two didn't really interact with each other. Christine wasn't able to get Jacob diagnosed until he was 4, so she pushed her doctor to get them started with the testing process to be diagnosed.

"The pediatrician told me I was crazy not to think they were healthy," she said, "but sure enough."

Haley Carter has six children, three of whom have special needs. She also had to push doctors to get her children diagnosed with autism, and recently found out one child had been diagnosed incorrectly.

Her 9-year-old son, Kaleb, was originally diagnosed with autism when he was 3. Since then the qualifications have been updated, and he was re-diagnosed as having Tourette syndrome. His "ticks" were similar to the repetitive motions common with autism.

A major difference, however, is treatment. With autism, therapists work to have them stop those repetitive behaviors, but if a person with Tourette is not allowed to do that movement, it will build up and then "sort of explode into a flurry of ticks," as Carter described it.

"I'm a big advocate for identification, getting the diagnosis ... of getting an evaluation as soon as you feel something wrong," Carter said. "You have to keep pushing if you think something is there because it can really help them."

She tells her stories to friends who "don't want to label their child," she said.

Also, now that all three children have been diagnosed, they are eligible for the state's Children's Special Health Care, which covers $10,000 in copays each year. Carter uses this to supplement their primary insurance.

She said she knows people wonder why she would keep having kids if they have autism. But what they don't realize, she said, is her children were diagnosed much later. By the time Carter found out her second child had autism, she already had two more.

"Besides, I think everyone is still valuable even with a disability, so sometimes it's worth a little risk," Carter added.

Christine has also quickly become an advocate for her children, trying to get them the diagnosis, medications and therapy they need.

"You have to be, just because no one else is going to do it," she said.

For years, this included working at a grocery store after being laid off as a music teacher in Florida. It's taken the family five years to be able to afford therapy after moving to Indiana and having to reapply for aid.

Christine finally got sick of it, and just a week after being released from the hospital for the bite wound she signed up for classes in accounting. She is a full-time student taking classes online.

"They told me I was crazy," she said. "And I said, 'Clearly you haven't met me before.'" To get a CPA's license, Christine was told she had to have five years of experience or get her master's degree, and she's had people question if that was a good decision, since she is 45 years old.

She earned her bachelor's degree last year and only has one year left in an accelerated master's degree program. She does her classwork while the kids are at school, and on the weekends.

As a result, Christine has accepted a part-time job with the Behavior Associates of Indiana, an autism behavioral clinic in Muncie. She's already done the company's budget and marketing plan.

She wants to take what she's learned and help other people get financing for their children with autism.

"I don't want people to have to struggle," she said. "They need to know that there are people out there to help."

Sometimes the nerve damage in her left arm starts up and causes her hand to lock up and close. A couple of times she's been getting a drink in the drive-thru and has crushed it. She switches to driving with her right arm. She's on a mission, and if someone tries to stop her, well, then they clearly haven't met her yet.


Source: The Star Press,


Information from: The Star Press,

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