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Carly's Voice; Breaking Through Autism Arthur Fleischmann, and Carly Fleischmann

I would like to kick of my parenting series on this book I hope you like it!

 


      

          Carly’s Voice: Breaking through Autism

 

 

The American Psychiatric association defines Autism as the following:

 

“Autism Spectrum Disorders* are a range of
complex developmental disorders that can cause
problems with thinking, feeling, language, and the
ability to relate to others. They are neurological
disorders, which means they affect the functioning
of the brain. How autism disorders affect a person
and the severity of symptoms are different in each
person.”

The American Academy of Pediatrics states that 1 in 166 children have autism.

 

There has to be an impairment in the following categories in order for a child to be diagnosed with Autism:

·         Communication

·         Socialization

·         Repititive/Stereotypic behaviors

 

The early years :Early Childhood and Elementary Years

Our story begins with a vignette. A day in the life of Carly.  We see immediately the heartache and pain of having to raise a special needs child without all the tools and support at first

She has escaped the nanny’s care while she was upstairs getting her bath ready. After a panic stricken search .We find Carly , naked in the park swinging.  Fortunately a kind stranger stood nearby but was relieved when her Father came to get her .  I can relate to the weight of terror that settles on your heart  when you are searching for an autistic child that wondered off.  We had just moved into our new apartment in July 2013 .   While I was fixing lunch, Zaria my daughter with autism wondered off quietly.  When I realized she wasn’t in the closet. I had to look on property.  There are two swimming pools what if she has fallen in?  What if she is in the car of a stranger?  These thoughts plagued my mind for what seemed like the longest 20 minutes of my life.  Besides being autistic my child has an IQ scare of 70.  I was gripped by fear as I searched the grounds she wasn’t by the pool behind our unit, neither was she near the next building over.  Zaria was in the third section in the back sitting in a tree as if it was the most natural place to be.  Like mommy where else would I be? Her face seemed to say.  I was surprised, mixed with relief and frustration.  I knew she didn’t understand but it didn’t make my waking nightmare any more bearable.

     I like how Mr. Fleishman used foreshadowning in the beginning.  Youa re experiencing the early years as they experienced them with dread mixed in with a lot of hope. They walked the fine line of  not being sure of what could be done but adamant of determined not to give in .  Also what was interesting was the makr contrast in development from Carly’s fraternal twin ,Taryn who is autistic.  By the time Carly was two they noticed a “dozy gaze”.  She didn’t crawl like her twin like a stuck crab on her back that couldn’t quite get away.  At 10 months a language delay was noticed and by the age of two her symptoms became more pronounced but doctors couldn’t really explain the lack of progression.  I can definitely relate to the general feeling of helplessness you feel in the early childhood stage.  Her speec h delay would be known as “apraxia” a motor  planning defiency in  which the muscles in her mouth failed to obey the directions of her brain”  In   addition to the Pervasive Developmental Delay it was a very broad term used to describe several conditions ,that  include autism.  To add to the famalies  struggles  Tammy, the mothe r was diagnosed with lymphoma ,at a time that would’ve been the death blow to a family that wasn’t as committed.  So for a time they had to focus on Tammy’s recovery.  Parents have to take care of themselves in order to be able to take care of their children.  Anyone who has ever flown on a airplane knows that they instruct to put the oxygen mask on yourself first ,then the child. Why? If something where to happen to the parent the child would not survive.    Self care is vital and necessary. Carly then began her occupational therapy, as well as , a gluetin diet.  Once they included Applied Behavorial Thearpy.  At 50,000-60,000 it seemed like it was a momumental sacrifice but a necessary one.  Canada doesn’t cover these services so after 2 years they had to reconsider public school again.  As long as there was an ABA tutor to assist in the classroom it was feasible, but when they tried to replace the tutor with an accountant to satisfy union requirements from the school district it was time to make a change once again.  The Fleishcmann’s converted the basement to one room school for Carly where her Speech Thearpist ,ABA helper and her assistant Howard. It really does take a village to raise a child.  Onde day at the age of 11 Carly typed “Help Teeth Hurts” in her communication device (Dynavox). It surpised Barbara and Howard who spent the most time with her .  According to the doctor’s prognosis there didn’t seem to be any reason to believe there would ever be a comprehensive thought let alone the ability to communicate it.

The later years: Preteen and high school

Her parents also utilized respite care at Cedarview meaning that Carly would  live there a few days of the week. Carly inspite if her great strides at communication she still couldn’t sleep through the night.  It also gave Carly a chance to form another relationship .  Something that would’ve been difficult to do on her own.  Carly’s Bat Mitzvah also provided another turning point. Through lots of sheer determination and the gradual  support of her parents She was able to convince Ellen Degeneress to read her speech(via prerecorded DVD)  Her world opened up in ways that no one could’ve have imagined.  It gave their small community a chance to experience Carly in a real concrete way. There needed to be something beyond the image of the girl  who flaps her arms and makes strange sounds.  Underneath that was a thinking, reasoning person who had emotions just like you and me. Except we all knew it .  What is truly interesting to me is that even though she went on to do an interview on local news,20/20 and Larry King .  She still had to prove she was intellectually and physically able to sit in a mainstream high school !    Carlton high school for special needs kids would become the bridge into Western  a main stream high school within there district.  By 2009-2010 would be considered an “experiment” they would try it out for three times a week (1 hour).  By the 2010-2011 She attended Western full time and two of her classes were for the gifted.  I found Mr.Fleshmaann’s writing style very eloquent, honest and insightful.  He did a great job of letting us experience his journeythe same way he did.  I was inspired as an parent of an autistic child it didn’t feel like I was alone.  Yes there are resources but they can’t capture the essence of the experience like he did. So I would highly recommend this book to parents/caregivers want some insight on what it’s like for the child and the parents

 

 

 

 

 

 

 

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