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. 

Out of My Mind – Cerebral Palsy

Out of My Mind

Sharon M. Draper, Author

Atheneum Books for Young Readers, Fiction, 2010

Suitable for:  Ages 10 to Adult

Themes:  Cerebral Palsy, Intelligence, Interpersonal Relationships

Opening “Words.  I’m surrounded by thousands of words.  Maybe millions.  Cathedral.  Mayonnaise.  Pomegrante…Words have always swirled around me like snowflakes — each one delicate and different, each one melting untouched in my hands.  Deep within me, words pile up in huge drifts.  Mountains of phrases and sentences and connected ideas.  Clever expressions and jokes.  Love songs.”  Melody’s head is full of words and sentences.   She is  11 years old and has never spoken one single word.  Melody has cerebral palsy and is trapped in a body that won’t do what she wants it to do.  She is confined to a wheel chair, unable to move, walk, talk, feed  and care for herself.  Melody has a photographic mind, and is a very smart.  But no one knows that except Melody.  No one knows that her favorite song is “Elvira.”

Draper has written a very compelling novel and has given us a rare glimpse into Melody’s world.  She shows Melody’s frustration in having doctors, teachers and people talking about her like she’s “profoundly retarded and unable to understand.”  Her frustration  and her inability to speak can lead to “tornado explosions,” which only reinforces their beliefs that she’s severely brain-damaged.  Melody says, “I live in a cage with no door and no key.”  “And, I have no way to tell someone how to get me out.”  Draper has created a very strong protagonist who simply will not give up and fights to find that key to unlock the cage so people will know she is there.   She’s tired of going to school and being put in a special education classes and taught the same nursery rhymes and songs year after year.   She wants to learn.  She’s hurt that no one wants to be a friend and deals with constant bullying when she participates in inclusion classes.

Fortunately for Melody, she has loving parents who advocate for her, and a neighbor who drills Melody every afternoon on words she has written on flash cards to help Melody communicate.   Melody is even more determined, and one day she discovers a special computer that can help her speak.  Melody world begins to change once she gets her Medi-talker.  She is catapulted into some exciting new adventures that are also fraught with disappointment.  But this very courageous girl now has a voice, and she’s not afraid to express her feelings.  Hooray for Melody!

After reading Draper’s very moving novel, I believe there are very important things Melody would want you to know when meeting or working with a child with special needs.  Don’t talk about them as if they are invisible.  Don’t assume that they are brain-damaged and aren’t intelligent.  Always assume they can hear or understand you even if they can’t communicate.  Look directly into  their eyes and talk to them as if they understand you.  Treat them with respect and dignity.  Don’ talk in a loud voice, talk normally.  Don’t look away if you feel awkward.  Smile and say hello.

Draper is “fiercely adamant that nobody feel sorry for Melody.” “I tried hard to make her unforgettable – someone you would never dare feel sorry for,” says Draper.  “I wanted her to be accepted as a person, not as a representative for people with disabilities.  Lots of people have worse difficulties in their lives. As readers embrace the story, I hope that they will cheer for her!”

Sharon Draper is a two-time Coretta Scott King Award-winning author, most recently for Copper Sun, and previously for Forged by Fire.   Visit this award-winning author, educator, speaker, poet and National Teacher of the Year at her website (click here).   Her website contains interviews and information about all of her books.

I also want to say a special thank you to Cathy Mealey for recommending this extraordinary book to me.  Out of My Mind is one of my favorite reads this year.

Mockingbird – Autism Spectrum

Mockingbird, is an exceptional middle grade book by Kathryn Erskine, about 10-year-old Caitlin, whose older  brother, Devon, was killed in a shooting at the middle school.   Caitlin knows her brother is dead.  What she doesn’t understand is how she’s supposed to feel about Devon’s death.   Caitlin has Asperger’s Syndrome, and feeling emotion doesn’t register.  Her world is very black and white.   Grey is not comprehensible, and colors only run together and blur her vision.    She sees her father, family, friends, and teachers expressing grief and emotion.  For Caitlin, it is simply THE DAY OUR LIFE FELL APART.  Yes, she misses her relationship with Devon, but to translate that into an emotion is beyond her.  She turns often to her best friend, a dictionary, where she can look up words to understand reactions and  the world around her.   Everyone wants to help her find closure.  The very word “closure” escapes Caitlin.

Support comes from a school counselor who encourages Caitlin to make new friends, an art teacher who helps Caitlin to explore her feelings through her wonderful drawings, and in a first grader, who desperately needs a big sister because he’s suffered a loss.

But, it is Caitlin who one day realizes what closure really means for her family.  She sets out to enlist her reluctant father’s support on a very important project.   In doing so, she not only finds closure for herself and her father, but for the entire community that is struggling to recover.  Caitlin also learns that the world isn’t so black and white, and she can let in a world full of color.

Erskine really does an impressive job of getting into Caitlin’s mind and behavior.  She  gives young readers a very convincing portrayal of Asperger’s Syndrome.  My hope is that Mockingbird is required reading in 5th grade and middle school, so that children have an understanding that everyone is special in a unique way.  Her book has found a home on my book shelf!

Erskine’s book won the National Book Award. She wrote this story in the aftermath of 33 people who were shot at Virginia Tech University in Blacksburg, Virginia in 2007.   She wanted to understand how her community and  families, especially those with special-needs children, dealt with such a violent tragedy.   She found herself walking into a fragile world, because she “strongly believed in early intervention, whatever the disability.” 

Note:  Asperger’s Syndrome falls under the high-functioning Autism Spectrum Disorders.  The U.S. Autism and Asperger’s Association will hold its 2011 World Conference and Expo in Seattle, Oct. 27-30.  For more information click on the highlighted site.

Copyright (c) 2011,  Patricia Howe Tilton, All Rights Reserved

Carly’s Voice – Changing the Voice of Autism

What a fascinating month to share interesting stories of the heroes of autism and the daunting work that goes into helping each child transform his/her life.   Although I am not reviewing  a book in this blog, I want to share with you a remarkable story of a teenager.

According to the organization Autism Speaks, 1 in 110 children are diagnosed within the autism spectrum, making it the more common than childhood cancer, diabetes and HIV.  One in 70 children diagnosed are boys.  In the U.S. alone, there are 1.5 million people, and tens of millions worldwide.   Thus, the reason I am going to feature a remarkable teenaged girl who has autism — Carly Fleischmann.   Carly, a twin, was diagnosed with autism at age three.  She has never spoken and she spent her life feeling trapped in her body.   One day she surprised her family and typed out three simple words on the keyboard — help  hurt  tooth.   She was sick and asking for help.  Learning to type on the keyboard unlocked her world.  The rest is history.

Carly was featured on a segment about inspirational teens, on CBS The Talk, April 15, with Holly Robinson Peete.   She has been featured on 20/20, The Today Show, ABC and the Larry King Show.   I hope you enjoy this remarkable video.

She has a website, Carly’s Voice - Changing the Voice of Autism at  and a Facebook following  with over 51,000 fans.  She is also wrote a novel of her life, which I found quite compelling.   She vividly describes in great detail what it is like to live in her body, which some times burns and feels like ants crawling on her skin.   “I am autistic, but it doesn’t define me,” says Carly.  “There are times when I wanted to give up, but I can’t give up hope.”

In the next decade, 500,000 children with autism will reach adulthood and it will become even more important that they are prepared for life, and society is there to embrace their transition.   Children within the autism spectrum are very intelligent and have unique talents in the fields of art, music, science, computers, and math.

On Friday, April 22,  at 2 p.m., The Talk will air the last of its series on autism.   They will focus on the autistic children transitioning to adulthood.  Autism Speaks has a special “Transition Tool Kit” on its website.