Carly’s Voice: Breaking Through Autism

Carly’s Voice: Breaking Through Autism

Arthur Fleischmann with Carly Fleischmann, authors

A Touchtone Book, Published by Simon & Schuster, Biography, Mar. 27, 2012

Suitable for:  Parents of Autistic Children, Young Adults, Educators

Themes:  Parenting an Autistic Child, Nonverbal, Breakthroughs, Courage, Hope

Opening:  “A news reporter once asked me to describe our a-ha moment with Carly.  He wanted to understand that blinding flash of insight we had about our daughter.  I thought for a moment before replying.  There never has been a moment like that.  Carly has always just been Carly.”

Carly and her fraternal twin sister, Taryn, were born in 1995.  From the beginning they were very different babies.  As early as 10 months, Arthur and his wife, Tammy, noticed Carly was showing signs of delays in her gross motor skills, language, auditory attention and socialization.  By age two, she was diagnosed with severe autism and an oral motor condition called apraxia which prevented Carly from speaking.  Doctors predicted  minimal intellectual development.  Her parents refused to give up in their attempts to reach Carly.  Their lives were filled with therapists who worked with her at home and at school.  In fact their entire family life, which included Taryn and an older brother, Matthew, revolved around caring for Carly.

Arthur Fleischmann, bares his soul as he writes a very raw and honest book about life with Carly.  The sleepless nights, explosive outbursts, chaos, exhaustion, not to mention the huge financial debt they incurred paying for special ABA treatment with two therapists, a nanny, and special equipment.  They were constant advocates, fighting teachers, principals and school boards to make sure Carly received important ABA treatment and attended special schools.  Her ABA therapists saw Carly’s intelligence and worked diligently with Carly using many methods to draw her out.

Hope arrived at age 10, when Carly reached over to the computer and with her index finger typed three words “Help Teeth Hurt.”   Carly was very smart, and this was the beginning of unlocking the door so Carly could find her voice.  It didn’t happen over night.  In fact it took many turbulent years filled with meltdowns, tearing off clothing at night, head banging, and long periods of silence when she’d refuse to type her feeling or interact with her therapists and family.  A significant breakthrough occurred when Carly finally typed to her therapist “Tell Mom and Dad to stop yelling at me.”  “At night when I yell and jump around.  It’s not fun for me.  My legs and arms tingle and I can’t make them stop.  I have to move or it gets worse.  I am hitting myself to stop this feeling.”  She was finally communicating what was going on inside of her and doctors could treat her symptoms that were painful with medication and help reduce meltdowns.  Carly began to calm down and over time and she began to share more of her world in Carly’s voice.   Her therapists and family discovered a very intelligent, gifted, funny and witty young woman who wanted to do normal activities like her brother and sister.  She wanted to go shopping with her mom and to take long walks with her dad.

Epilogue:  There is a special 20-page Epilogue at the end of the book that is written by Carly, who is now 17 years old.   It is funny, insightful and inspiring.   You learn why she calls her voice, her “inner voice.”  You discover that she was talking all the time as a young child, but inside of her head.   One day, she realized that no one was hearing her.  She talks about information and sensory  overload.  She describes her moment of realization that she was different from Taryn and Matthew.  She began to realize on her own that “it wasn’t that I didn’t understand the words, it was that my brain couldn’t focus directly on the conversation.”  This happened when Carly was bombarded with too many noises, bright lights, and smells, which would distract her and put her on sensory overload.   Left to her own resources, Carly taught herself what she calls “audio filtering,” which helped her sort things out.  It is a very hard thing to learn, but Carly did it on her own.  This is just a peek at what this inspiring young woman has done for herself, autistic children, parents and the medical and educational communities. Carly has found her voice and has become advocate helping people understand autism!   You can follow Carly Fleischmann on Facebook (over 32,100 followers)  and Twitter.

I Am in Here: The Journey of a Child with Autism

I Am in Here:  The Journey of a child with Autism Who Cannot Speak but Finds Her Voice

Elizabeth M. Bonker and Virginia G. Breen, Authors

Revell, Baker Publishing Group, Oct., 2011, Nonfiction

Suitable for:  Parents, and Teens and Adults with Autism

Theme:  Autism Spectrum, Poetry, Finding a Voice

Synopsis:  Elizabeth was diagnosed with autism at age 13 months and lost her ability to speak at 15 months.  Until then, she was progressing normally.  She was diagnosed as mentally retarded by specialists, but her intelligence is now considered in the genius range.  Her older brother Charles also has autism, but is very talkative.  Virginia admits the autism journey is like riding a roller coaster as they heard of new treatments daily and had to make their own decisions about what would work for their children.   In their attempt to reach Elizabeth,      her parents worked with a woman who developed teaching method called Rapid Prompting Method (RPM).  The program worked for Elizabeth.  She began to write single-word answers and then full sentences with a letterboard.   From ages seven to thirteen, Elizabeth has written more than 100 poems, in which she talks about her inner world and her connection with the world around her.  She is a self-taught poet who was born with a gift to write.  I found it interesting that Elizabeth does her homework on a laptop computer, but writes her poetry on the letterboard.  I have told you enough about Elizabeth.  Now I want you to meet this beautiful soul.

 ME

I sometimes fear
That people cannot understand
That I hear
And I know
That they don’t believe I go
To every extreme
To try to express
My need to talk.
If only They could walk
In my shoes
They would share my news:
I  am here
And trying to speak every day
In some kind of way.   (age 9)

I wrote Me to let people know that even though I don’t speak, I feel and understand the world around me.  I want to be heard and respected.  I want that for everyone, especially for people like me.” – Elizabeth

Me Revisited

I can’t sit still.
What’s wrong with me?
My body is doing things
I can’t explain.
My dignity I am trying to maintain.
People Stare at me
When I rock and shake.
I don’t know how much
More I can take.
So much to deal with
Going on inside me.
I wish I could get better.
I want to be set free
From my silent cage.

“Some of the people at school who do not know me make me feel uncomfortable.  They stare at me.  I would not rock and shake if I could stop it.  It just happens sometimes  I wish they could understand, but mostly I wish I could explain it to them. ” – Elizabeth

Bright Future

When you see
A tree
Think of me
Growing strong and tall.

When you see
The Sun shining brightly
Think of me
Tough and mighty.

When you see
The water on the lake
Think of the future
I plan to make.

Me
Strong
Mighty
Free

Why I like this book:  Elizabeth’s book, co-authored with her mother Virginia, is an inspirational and powerful beacon that will offer much hope to parents with children in the Austism Spectrum.   It is a profoundly moving and spiritual journey between a mother and daughter.   Elizabeth shows great courage and determination in learning to communicate, despite the fact that she lacks fine motor skills to write.  She types one letter at a time with her forefinger.  Her optimism is remarkable as she wants people to find peace in her book.

For Virginia, “Elizabeth has become my teacher, and I am learning to think about life, faith, and relationships in a whole new way.  I have come to see the world as divided into Why People and How People.   Why People cannot be at peace until they answer the question of why suffering has befallen them.  How People ask “How can I move forward?  Having been dealt their hand in life, their focus shifts to how they can find whatever healing and wholeness is possible.”  For Virgina, her 13-year-old daughter is a miracle who has “shattered the silence of autism through her beautiful poetry.”   I Am in Here, is a masterpiece of poetry and prose.  And we are so fortunate to capture a rare glimpse into Elizabeth’s beautiful mind and world.

You can visit Elizabeth at her website I Am in Here, and read the first two chapters of her book for free under “Book” and “Read a Passage.”   You will also find  videos, resources and other information.    Virginia has also indicated that Amazon is having a Kindle special price of $2.99 for I Am in Here during the month of March. 

Autism Awareness Month is approaching  in April.  For information contact Autism Speaks .   Join Autism Speaks in celebrating World Autism Awareness Day on April 2 and Light It Up Blue to help shine a light on autism. Whether it’s your front porch or your local city hall, an office party or a banquet, the entire world is going blue to increase awareness about autism.  The month will be filled with activities.  Among the buildings going blue last year were the: Empire State Building, Christ the Redeemer in Brazil, Niagara Falls, Al Anoud Tower in Saudi Arabia,  Cairo Tower in Egypt, Great Buddha at Hyogo in Japan, CN Tower in Canada and Sydney Opera House in Australia.

Following Ezra – Austism Spectrum

Following Ezra: What One Father Learned About Gumby, Otters, Autism and Love from His Extraordinary Son

Tom Fields-Meyer, Author

New American Library, Nonfiction, September 2011

Suitable for:  Parents, Family Members, Teachers, Special Ed Teachers

Synopsis: “The walk was always the same.  Then one day it was different.”  During the summer of 1999, Tom and his wife Shawn spent two months at a retreat with their three sons.  Ezra was three years old when they began to notice subtle changes and unusual behavior.  On an early morning stroll with his dad, Ezra took off down an isolated road.  Tom followed him for nearly half a mile.  Tom kept backing off to see if Ezra would realize he was alone and get upset.  Not Ezra.  He was utterly alone and in his own world.   Tom felt bewilderment and fear.  “Ten years ago I watched  my solitary son venture down an isolated road, ” said Tom.  “Long ago, I made a choice to follow Ezra, and to watch in awe and mystery, as my son makes his own unique way in the world.”

Following Ezra is a must read book for parents with children diagnosed with autism!  This is the most powerful, compelling and inspiring book I’ve read to date about how one family chose to reach their autistic child.  Instead of listening to a therapist tell Tom and his wife, Shawn, that they needed to “grieve for the child he didn’t turn out to be,” they refused.  “When Shawn and I dreamed of starting a family, I carried no particular notion of who our children would become,” said Tom.   I didn’t carry any conscious notion of what my children would be like — whether they would be girls or boys, tall or short, conventional or a little bit odd.  I planned only to love them.”

Autism effects  each child differently  In Ezra’s case, he showed signs of isolating himself, playing alone, and hiding in closets.  He showed no fear, or didn’t understand consequences.  He liked to be wrapped tightly in a blanket so he could feel his body, but he didn’t want to be touched.  He spent hours lining up his dinosaurs in a row.  Loud noises and crowds overwhelmed his senses.   If you asked Ezra a question, he would look off into space and just repeat the question.

Although Ezra participated in special education classes and therapy that was available, Tom chose an unconventional approach to working with Ezra at home.  Tom decided that he  wasn’t going to “fix” Ezra, but rather follow him into his world so he could understand and find a way to reach him.   There are many moments of humor.

Instead of discouraging Ezra’s obsessions with trains, Gumby figures, the color red, and zoo animals, Tom saw it as an opportunity to build a relationship with his son.  Tom spent many afternoons with Ezra at the zoo.  He watched in amazement as Ezra happily followed his traditional path around the zoo pointing to animals and reciting information.  Tom discovered that the zoo represented order for Ezra,  as every animal was in its place.  This order helped calm Ezra.  Over time, Tom realizes that Ezra understands that his father cares about what he cares about.   The connection between father and son continues to grow,  as does his potential to have relationships with family, friends, and other people.  It also helps that Ezra is the middle child, as he is forced to interact with his two brothers.

Ezra is smart and memorizes numbers and dates of favorite Disney movies.  He begins to connect with people by asking their birthdays and then telling them what movie was released on that day.  He develops a fascination with cartoons and animations, because the faces have fixed, predictable expressions.  Tom enrolls Ezra in an animation class, and Ezra begins making animated films. (Click on  “The Alphabet House”  to view Ezra’s animation that  became a book he co-authored with Tom Lichtenheld.   E-mergency was released in October 2011.)

Ezra is gaining a sense of self-awareness by age 12.  It helps him prepare for his bar mitzvah on his 13th birthday.  His bar mitzvah really culminates in a celebration of the past 10 years of his life.  Ezra greets 300 people, shakes their hands, thanks them for coming, and fulfills the required chanting, recitations and speech.  This is a remarkable achievement for a boy who couldn’t look at people, and a testimony for Tom and Shawn’s perseverance, belief and love for their son.

Tom Fields-Meyer, a former senior writer for People, has written for dozens of publications, includig The New York Times and The Wall Street Journal.   A graduate of Harvarard, he lives in Los Angeles with his wife and their three sons.  Follow Tom on his website at http://followingezra.com.   He travels and speaks to parent groups all over the country. 

A Friend Like Henry — Austism Awareness Month

When I began reviewing books in honor of Autism Awareness Month, I never imagined how much I would grow in my understanding of the complexities of the autism spectrum, and the level of respect I have for those with autism and their families.   One of the things I have discovered is that no children are alike and their methods of learning may vary.  I found that in this wonderful story A Friend Like Henry, by Nuala Gardner.   An international bestseller by Sourcebooks, Inc.

Nuala  bravely invites us into her world sharing with great authenticity the pain, agony and despair  a  family with a severely autistic child copes with daily.   A nurse, Nuala recognized very early that her son Dale’s infant behavior didn’t seem right.  He was simply “the perfect baby.”    He was passive and rarely cried and slept through the night without a peep.  Everyone commented how good he was.  When she shared her concerns with her physician, she was dismissed.   As the months passed Nuala, began to see that Dale was addicted to motion.  When he was with other babies, he was unresponsive.  He learned to crawl quickly and when he discovered his legs he ran on his tiptoes.   One day at a play group, he sat next to a little girl, studied her and then wacked her in the face with a toy.   By the time he was two and three, severe tantrums began when something wasn’t on Dale’s terms.   And, his sleeping patterns changed — he would only sleep two hours at night.  Dale didn’t speak for a long time.  Nuala and her husband, Jamie, were exhausted.   Finally a friend recognized his behavior and recommended a doctor and he was diagnosed with severe autism.

After years of working with Dale, a small breakthrough occurred.   At a family outing, Dale met two dogs and began playing and laughing.   The Gardners had never seen their son so happy.  They took Dale to visit a litter of Golden Retriever puppies, and one dog in particular chose Dale.   The bond between Dale and his new puppy, Henry, literally changed his world.   Within three weeks of having Henry, teachers were reporting significant changes in Dale.   Through his unconditional love, Henry helped unlock Dale’s world and him how to feel, communicate and care for himself.   Henry helped Dale navigate in the world.

Although this book was written from his mother’s perspective, we gain some insight into Dale’s life through his recollections at the end.   There are a number of videos on the web about Dale and Henry.  Just click on:   http://www.youtube.com/watch?v=vJSu3G0U5SY

“Not My Boy!” — Autism Awareness Month

Yesterday I reviewed My Brother Charlie, and talked about the HollyRod Foundation, launched by Holly Robinson Peete and Rodney Peete.   On Friday,  the weekday CBS Show, The Talk, focused on fathers with autistic children.  Rodney,  actor Joe Mantegna, and single dad Jimmy Smith,  shared their experiences in a roundtable discussion led by Holly.  After watching the program, and reading Rodney’s book, Not My Boy!,  it felt significant to discuss the impact on dads, who sometimes feel left out of the equation.

Joe Mantegna has a 23-year-old daughter, Mia, who graduated with honors.  Joe said “he was relieved the first day of school when Mia’s teacher, who had an autistic child, welcomed her with love and talked to the classroom about how they all would help her.”   Jimmy Smith said he woke up one day when he realized that his son had an excellent memory and wanted to learn.  All three men said they were just glad to talk with other dads!

Rodney, a former NFL quarterback, was candid about how his son’s autism affected him.  “I had dreams for R.J. and wanted to do all the things that father’s do with their sons,”  said Rodney.  “I wanted to take him into the locker room, play ball,  but R.J. wanted to watch the water run across the rocks in a stream.  I was in denial, refused to accept R.J.’s diagnosis, would not read any books on the subject,  and wouldn’t talk to other dads.  I decided I am going to fix this.   That’s what dads do.”

One day Rodney had a pivotal moment when he took R.J. to the therapist.  “I got down on the floor and tried to play with R.J.,  and there was no connection,”  he said.  “The therapist showed me how he connected with R.J., and within minutes I saw my son laughing and talking.   It broke my heart — a stranger was connecting with my son.  In that moment I knew I had to turn things around.”    He realized that the entire family needed to be on the same page. Today R.J. has gone beyond expectations and plays soccer, with his dad there cheering him on.

Not My Boy!  should be required reading for all father’s who have children who fall under the autism spectrum.   It is a powerful look at Rodney’s own inner journey with his son’s autism.  It offers a message of hope and inspiration for families.

Next Friday, Apr. 15, at 2 p.m. EDT, The Talk, will feature inspirational teenagers who are autistic.

Visit elizabethannewrites  and read reviews of two excellent young adult books that honor Autism Awareness Month.