Who Calls Their Child A Strange Son?
Portia Iverson along with her husband, Jon Shestack founded the organization known as Cure Autism Now (CAN), which recently joined forces with Autism Speaks, the organization started a few years ago by Suzanne and Bob Wright.
There are eighteen chapters within Strange Son beginning with Departure of the Mind. Personally I would never purchase this book and do not recommend any parent, relative, therapist, teacher or other individual associated with someone on the autism spectrum to do so either.
I was under the impression that Strange Son was about the Halo method of communication that Tito Mukhopadhyay used, and since I was curious to this teaching of nonverbal children I accepted the offer of the book.
I have two sons on the autism spectrum. My youngest is almost twelve and nonverbal. I have perused through page 72 of Strange Son and gave the book away since it was apparent that I would not finish the book anytime soon. I literally had to keep putting the book down each time I got to another page and write down the quotes I could not believe I was reading.
I must start by saying that the author picture at the back cover of the book is very disturbing. Although I can now see why a dark and gloomy photograph was used, as the words on the pages of Strange Son are very cruel and hurtful to the autism community.
I was appalled at the lengths Portia Iverson went to try to cure her son and learn about the science of autism. The word used to describe the first two chapters is melodramatic. It is quite over the top and bothersome to any parent who cares for a child on the autism spectrum. I would not want any newly diagnosed family to come across this book and read the way one parent has described her son or try to emulate her actions.
Here are some of the quotes I took issue with within the first 72 pages and ultimately led to my putting the book down for good.
"getting to the bottom of autism"
"time was running out for Dov"
"desperation for information"
The impressions I noted upon first reading Strange Son were that it reads like treating autism is an act of desperation. Besides the parent being melodramatic she seemed so disconnected with her family.
The book goes into the creation of Cure Autism Now and the backlash they received due to the name chosen for this organization. The footnotes are nicely organized in the book.
It goes into detail on how Portia learned of Tito and his mother Soma in India and how she went about tracking them down and brought them to a CAN conference in San Francisco back in the year 2000. They presented him with a laptop computer.
Tito was on the stage showing how he could point to the letters to answer questions his mother had. At the end of that session Tito was available for questions. Jon was anxious to get answers from Tito on why he rocked and flapped. It seemed like they started to come alive and view their child as someone with potential once they had met Tito. Portia stated that she did not view Dov differently.
Strange Son lists emails and poems that Portia received from Tito via email. There is also information within the book on the autism gene bank they started known as AGRE. This is something that my family has been part of since 1999.
Some other quotes I found unusual to publish about a child are as follows:
"Dov was born without a chance in life and he would never get one as long as he lived, so we might as well get used to it and the sooner the better - for everyone, including Dov."
That quote sure indicates that she was the one that needed to get a clue, and for a child's mother who is the founder of a national autism organization to publish such depressing thoughts about her child irritated me the first time I read it and continues each time I read the quotes again.
She even went as far as stating in Strange Son that "it is generally accepted that severely autistic people are retarded".
Also found within the pages of Strange Son was the comparison of the child that fell down a well years ago, by writing the following:
"I imagined Dov as a one-year-old, falling down a deep well, believed to be dead. And then years later, a light shone down that dark shaft and I could see him there, "somehow still alive"."
Portia seemed to live for the emails she had daily with Tito. There was a sentence that mentioned, "thousands of unbearable moments I experienced as we tried new therapies that failed and during all the hours I spent sitting beside him, not knowing if he was having a toothache or a bad dream."
That sentence was the first hint that Portia spent any time with Dov, because she explained spending hours night and day pouring over science journals, taking a class from someone at UCLA to learn the lingo and meeting with all sorts of professionals. To the reader at this point she appeared to be a professional student and not a mother to several children.
Briefly it is covered on how Portia arrived in California with a son and how she met Jon. Sometime after having Dov there were two more siblings, a girl and boy. I can just imagine what their opinion was on Dov based on the behavior of the parents.
The last sentence I noted from reading through the book was enough to stop my reading. I felt it was so off base from how I feel as the parent to a similar child that I could not fathom this negativity.
"I had been spending less time with Dov as the years went by. It was just too painful. I didn't know what to do when we were together."
I would like the readers to know that the consultant who sent me the book even posted a review of the book on Amazon. That to me is poor judgement and a conflict of interest. Tito has written a negative review of Strange Son on Amazon, calling it a "slap in the face" and has even posted comments in several of the reviews praising the book.
Before reading or purchasing the book I encourage you to read these quotes I have shared and the comments on Amazon, and then make up your mind. As a parent I cannot condone a book that puts down a child due to their autism and absorbs themselves in a cure instead of taking the time, patience and love the child needs to understand their existence and experience life with them and through their eyes.
Educational Autism Tips for Families 71 page resourceful ebook for families entering the school system with a recent autism diagnosis. Find out what issues take place over the course of a school day and meet these challenges head on.
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