Family hopes to raise awareness for Autism
By Michelle Donaghey
Autism is a disability that is near and dear to the heart of Bremen grandma, Marla Miller, who only wishes more people would know and realize what it is all about — and what it isn’t.
She hopes especially during this month that is dedicated to Autism awareness, more people will learn more about Autism and not be afraid of it.
“The numbers are one in 110 that are diagnosed now, but the numbers are growing. We have to alert the population of the world about Autism and how early intervention is the key to a more normal life with it,” said Marla, whose daughter, Mandi Miller, agrees.
“Autism is not something that will go away. It is prevalent worldwide. Parents need more resources for their children. There are not enough group homes or continuing vocational programs for the large number of children and adults with autism.”
Mandi’s daughter, Caselyn, 11, a fifth grader at Bremen Elementary Middle School, was diagnosed with Autism at 3 years of age. Mandi said she started noticing at age 2 that she was not talking and playing like the other children at school.
Those around her “made excuses for her,” said her mother noting that they explained that the girl might just need time and she didn’t have an older sibling who would teach her.
“Finally, a woman at my church was brave enough to confront me about it. I was mad at first,” said Mandi, who said, “No one wants to hear that something could be ‘wrong’ with his or her child.”
She explained she later thanked her as the church became a huge support for the family. Mandi welcomed the diagnosis, as she knew something was wrong.
“Now that I knew what it was, I could do something about it,” she said.
After her daughter’s diagnosis, they were referred to a neurologist where she was tested for epilepsy.
“The test was positive and she started medication to control her seizures,” which Mandi said were not grand mal but would have her daughter spacing out for a period of time without response for touch or sound.
“Of course, many with Autism do not respond to touch or sound — or do so negatively — so it was hard to tell when she was having a seizure,” explained Mandi, adding that her daughter is still under treatment for seizures but has not had one in years. She now sees a neuro-psychiatrist to help her with behavioral issues.
Caselyn started with Carol Lanning and Kristi Burkins, at the Church of the Brethren Preschool. When she had started school, she was mainstreamed receiving speech and occupational therapy after her diagnosis, which has helped her to eventually find her voice.
“She can speak in complete sentences, but she cannot carry on a conversation,” said her mother.
While Caselyn has poor fine and gross motor skills and her hands tend to shake, writing is difficult, but occupational therapy has helped with her desensitizing. This makes her able to handle clothing and helps her irritations better. Mandi said she is searching constantly for other treatments that can help her daughter in daily living.
“I will never stop thinking that there is more I could do for her. This summer, she will learn how to ride a bike through a study being done by the University of Michigan. I hope her behavior allows her to participate,” said Mandi, adding that she is “very excited about reaching this milestone with her.”
Mandi, who is a single parent who works for Miller’s in Wakarusa, also has hopes that there can be more testing done in a clinic or a hospital setting to find more answers concerning her diagnosis
For now, both mother and grandmother make sure that Caselyn takes part in life as much as possible. This past weekend, Caselyn was at the Easter Egg hunt, happy to find an egg with one of her favorite treats, Skittles, inside it. Grandma especially thinks her granddaughter should be out and about enjoying life.
Mandi hopes that others are not afraid of those with Autism and that they do not delay a diagnosis if they think there is something wrong with their child.
“The hardest thing is that first step to get the diagnosis. Then they will have to realize that this is NOT a death sentence. Yes, their lives will not be quite what they thought it would be, but they will learn that even the little things will be amazing. You can’t go by the ‘normal’ growth rates. As I have said with Caselyn, she is not reading, but when she suddenly started saying the ABCs out of the blue, it was amazing! When she buttered her first piece of bread, we cheered,” said Mandi, who says her daughter is here for a reason.
“We all have purposes in life. Caselyn is here to teach others to love and accept everyone as they are. I am very proud to have her call me “Mummy,’ said Mandi who always has hope.
“I want her to be happy. Right now with puberty, she is so inside herself she is unable to participate in the world around her. She cries and screams a lot and I just want her to not suffer. I don’t mind being responsible for her and she will live with me for a long time. I do not care if she is a doctor or is ever able to work outside the home. If that is her potential, then I will help her get there. But if it does not happen and we spend the rest of our lives listening to the Chipmunks and swinging, that is fine by me as long as she is happy.”
“I want her to have a happy, healthy life. I want her to be able to do the things she wants to do,” said Marla adding her biggest hope of all: “I want her to be able to show others that Autism was just a stumbling block, but that it could not keep her down.”
What is Autism?
Autism is a complex, physical condition that is linked to abnormal chemistry and biology in the brain. Basically, the links between the disorder and how the brain works. Some research has found that autistic people have larger brains and that their brains are “wire” differently. The causes are unknown, but currently research is very active in this subject. The current thought is that there are probably combinations of different factors that lead to autism, which can be different for each person who has it, either severely or moderately dehabilitating.
Genetics seem to possibly have something to do with it. Chromosomal abnormalities and neurological problems are more prevalent in families with Autism. Causes that have not been proven include diet, mercury poisoning, an inability for the body to process vitamins and minerals, digestive tract changes and vaccine sensitivity.
Autism affects more boys than girls — three to four times more. Income, education and lifestyles do not affect the risks.
While some have believed the MMR vaccine could have caused Autism in some, this was based on two facts including the increase of autism since the vaccine was introduced and those who have the regressive form of Autism, which develops after a period of normal development tended to show symptoms around the time of the vaccine. However, several studies have shown no connection between the vaccine and Autism. The American Academy of Pediatrics and the Center for Disease Control and Prevention report there is no link between vaccines and Autism.
Children should have routine exams done by the doctor and further testing may be needed if the doctor and parents are concerned. Major milestones that babies or children should reach include babbling by 12 months, gesturing such as pointing and waving by 12 months, saying single words by 16 months, saying two word phrases spontaneously by 24 months or if they have lost any language or social skills.
Tests can include a hearing evaluation, a blood lead test and a screening test for autism.
Evaluations for Autism will often include a complete physical and nervous system neurological evaluation.
Those who are concerned should note that Autism includes a large spectrum of symptoms and a brief evaluation cannot find a child’s true abilities. Evaluations might include communication, language, motor skills, speech and thinking abilities.
Parents should not diagnosis as soon as possible. Without a diagnosis, a child might not receive necessary treatment and services.
There will be an Autism Walk sponsored by JESSE’s Autism Resources of Marshall County at the Plymouth park by the tennis courts Saturday, April 30. Registration is at 10 a.m. with the walk from 11 a.m. to 1 p.m. The cost is $10 for registration and walkers will receive a free T-shirt. There will be puzzle shaped cookies from Mrs. T’s Bakery for $1. Rasta Joe’s chicken will be sold from 10 a.m. to 1 p.m. for $5 for a half. Call Johnna Ramer at 574-936-2627 for pre-orders or questions.