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Fighting autism takes P.O.W.E.R.

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Sharry Baumgarten doesn’t know a stranger.  She dresses with flair, walks with a bounce, flashes a ready smile, and her eyes twinkle during any conversation.  She exudes the good cheer of someone with a charmed life, but she has experienced life’s challenging twists, and one particular dark turn.

“My husband calls the day we first heard our son’s diagnosis, PDDNOS (Pervasive Development Disorder Not Otherwise Specified), our personal 9-11 in the sense that on that day every normal expectation we had in life changed,” she said.

Their 10-year-old son Connor is autistic.

Psychiatric professionals describe autism and its related malfunctions as neuro-biological brain disorders, but until the invention of MRI (Magnetic Resonance Imaging) doctors and researchers were unable to see the actual brain abnormalities that affect the communication, perception, and behavior problems of people with these disabilities.

“I first noticed something was wrong when Connor was about a month old,” Sharry said, “He did not make eye contact when we cuddled and cooed.  I thought he might be deaf.”

Connor was the Baumgartens’ third child so they understood what to expect from a newborn.

“At about 18 months old Connor just stopped babbling,” she said.

That’s the age when most children begin to verbalize as if conversing, and it is also the age when an autistic brain inexplicably shuts down a child’s developing communication abilities.  As the problem becomes more evident, autistic children experience difficulties and confusion with tactile sensations, hearing, taste, learning and problem solving, and motor skills.

Autism is not a disease, but a neuro-biological impairment–at this moment in time it is a permanent disability.  In the pre-MRI past professionals assumed cold, distant mothering was the font of autism’s behavioral symptoms, an accusation no struggling mother needs.

The spectrum of disorders comes naturally gift-wrapped with many layers of unwarranted maternal guilt.  “You always wonder if there is something you could or should have done to prevent the unfolding tragedy,” Sharry said.  To a lesser degree this old conclusion still surfaces in stray conversations from time to time.  “It’s human nature to want an easy explanation, a magic cure,” she said, and shrugged.

The disabilities common to persons with autism are referred to professionally as ASD (Autism Spectrum Disorder).  Some of the noticeable problems include speech and comprehension difficulty, inability to interpret and/or respond to body language, inability to empathize with others, and mental hyper-focus or distraction to the point of open panic.  Autistic children take longer than normal children to learn about the concept of personal social space.

“We were in a grocery store once when a man’s elaborate belt buckle caught Connor’s attention.  Before I knew it my son had made a beeline for the buckle, and practically had the tip of his nose on it while he got a close look at the details!  The poor man did not know how to react,” Sharry laughed.

“Autistic children usually have other impairments as well,” she said.  For example, external touch impairments may be coupled with internal digestive problems.  Autistic children may also have ADD (Attention Deficit Disorder), auditory processing trouble, and dyslexia.  Autism victims experience the whole range of normal childhood and maturing problems as well.  Early diagnosis and intervention are in everyone’s best interest.

The ASD list of communication disorders runs the gamut from milder Asperger’s Syndrome to severe Autism.

“Every case is unique to the affected individual,” Sharry emphasized, “and challenging to live with and around.”

Some autistic individuals never learn to speak or tend their own personal needs, while others grow up to hold down well-structured jobs and lives.

Everyone has heard about autistic “savants” who have some exceptional talent like total mental recall.  The movie Rainman was about one such person.

“People ask me about that all the time,” said Sharry, “In the real life autistic population, just like in the normal population, exceptional talents are rare.”

Structure and repetition are important for autistic children who do learn and comprehend many things, but more slowly than normal children.  The average normal child learns new information after maybe a half dozen exposures, but Sharry said an autistic child may need upward of 40 exposures.

Routines save time by sidestepping comprehensions difficulties.  “iPods are a godsend!  Connor can be taught something electronically with more repetitions than any human teacher could endure,” Sharry said.

“The children often forget skills and knowledge they do not use on a regular basis so summer vacations before iPods were a big bar to academic achievement.”

Connor spends part of his school day in a regular classroom with his age-mates, and specific periods of each day in additional instruction time in each subject in his grade level.

School district funding cutbacks have reduced the local Special Education program that includes not only fewer teachers, but also less speech therapy, counseling, psychological services, and of course program administration time.

“Parents need to get involved.  Make yourself a friend of the school.  Give your time, your talents, and be a nice squeaky wheel–your child’s personal advocate,” Sharry said.

Brian Janvrin of Flower Mound, for example, is sponsoring a charitable golf tournament Nov. 9 at Bridlewood Golf Club to raise scholarship funds for autistic LISD students and college students interested in special education. Visit www.lisdef.com to register.

The economic prosperity in most of southern Denton County prevents the implementation of government funded education programs provided free of charge in schools with lower income populations.

“HIPPA privacy laws prohibit the school district from notifying the parents of special needs students about each other, so parents of disabled children in Lantana are forced by a combination of circumstances to run much of the special needs distance quite alone,” Sharry said.

As autistic children lose learning and communication abilities they become isolated socially from their peers.  Data from NIMH (National Institutes of Mental Health) indicate many autistic teens notice their social isolation.  Lacking the skills to make and sustain friendships they may also suffer from anxiety and depression, and have great difficulty communicating what is wrong.

“Mothers tend to become isolated with their disabled children,” Sharry said, “Other parents don’t know how to interact with a family whose physically large child has only the abilities of a four year old.”

Legally, public schools may cease to provide services to ASD victims who reach the age of 22.  Parents and relatives then shoulder the full burden of arranging special needs employment, independent living, and support services for their disabled young adults.  This is where support groups are important so parents can network, exchange ideas, obtain information, and get feedback.

“It’s a blissful relief to find out you are not alone with a problem the size of autism,” Sharry said.

To that end she worked with the Denton Independent School District this past year to form P.O.W.E.R. (Parents Organization With advocacy Experience and Resources), a support group for local parents of students with any sort of disability at all.

“Parents of a wide variety of disabled children have a lot more common ground that you might first think,” Sharry said with a confident smile.

The fledgling P.O.W.E.R. group in southe
rn Denton County meets on the last Thursday of every month at a member’s home from 6:30 to 8:30 p.m. 

“We hope to meet at one of the schools several times a year.  Interested parents can give me a call at 940-297-5464,” Sharry said.

Supported by the school district, P.O.W.E.R. connects parents with each other, speakers from the Special Education staff, directors, counselors, administrators, and community professionals and service providers.

The thinking about causes and cures for ASD depends on who you speak with. At the current time no one understands why or when the brain abnormalities that cause ASD happen, and there is no one-size-fits-all therapy, no magic bullet, to cure them.  There is, however, an array of helpful tools.

“Early treatments, interventions, and strategies benefit disabled children.  The earlier you get started, the better,” Sharry said.

Getting a child diagnosed is a long process that may begin in the pediatrician’s office.  Official help requires first an official diagnosis so Special Education can be formulated to address a child’s real skills and specific disabilities.

“The school district can tailor quite a few of its resources to a child’s individual learning and social needs,” said Sharry.

She held up her thumb to show her individual fingerprint.  “We all have unique fingerprints, and we all have unique learning prints,” she said, “Public schools can help individual children a great deal, but parent involvement and help is essential.”

When asked for advice to parents of special needs children, Sharry said, “Be open to new ideas.  Criticism from school personnel may actually be constructive information if a parent listens with an open mind and heart.”

The November, 2012 P.O.W.E.R. meeting will be at the Baumgarten residence in Lantana.  Special needs parents from southern Denton County are all welcome.

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