I have been on a buying spree on books relating to autism. Luckily I am not paying full cost for these as I acquire them through eBay at a fraction of the list price. Sometimes I just base my purchase decision on the cost and then learn later the actual premise for the books. Such is the case with The Sound of a Miracle.
Having just finished reading From Tragedy to Triumph where Dr. Loovas persuaded the author to tell her story, I find similarities with The Sound of a Miracle with Dr. Bernard Rimland coaxing this author, Annabel Stehli to share her story. While reading these two books any parent with a child on the autism spectrum will be shocked to learn what the parents ahead of us endured via professionals and the media based on their incorrect perception of autism.
What I do not agree with is the promotional aspect of these books, suggesting autism can be cured and these kids have overcome the disability. The Sound of a Miracle is touted as a tribute to a mothers courage, yet after reading the same book, I feel that the mother failed the daughter and did not gain the proper insight into her autistic daughter Georgie.
There are two parts to The Sound of a Miracle, with auditory training not being discussed for the first half of the book. Not wanting to criticize the author too harshly I feel the book delved more into her older daughter Dotsie, who passed away from Leukemia, the Mothers two marriages and her own addictions and religious beliefs. This could have easily been written into two or three books covering each topic in depth.
The similarities with these two books consists of the time period they took place and the struggles the women faced with their spouses. It might seem at first that during the earlier years when the term Refrigerator Mothers was penned that they had to choose between their child and their personal life. It was so clear when reading The Sound of a Miracle that Georgie was born autistic or had many symptoms that never got resolved.
There was a gap of many years from when Georgie graduated from college and the author wrote the book. Maybe by that time she could see more clearly how Georgie needed help right from the beginning. It was obvious that the author was not confident in her parenting skills and questioned herself throughout the process of raising children. The author had a hard time cuddling and receiving eye contact from the time Georgie was born in 1965, plus she knew there was something odd about her eyes, and she had a low apgar score. There always seemed to be turmoil at their apartment in New York. Her husband Bill was not very involved in the parenting aspects of the girls. Early in the story Annabel took the girls away for a few weeks one summer for a vacation. During this time Bill had an affair with her best friend and things went downhill drastically.
Bill was not mentioned too often after that, and only briefly when Dotsie died and then when Annabel wanted to take Georgie to France. The Sound of a Miracle was upsetting to me because after Dotsie passed away Georgie was institutionalized for many years. This started as a trial since there was no alternative for Georgie. Annabel was intimidated by the staff at the institution and believed them when they stated her lack in parenting was to blame. At one point she was drinking and taking many prescriptions, ended up being committed herself. I found that period of time to be confusing because her mother and siblings were only involved intermittently. For a moment there I did not want to finish perusing this because I was not sure which direction The Sound of a Miracle was headed and found the passing of Dotsie very sad.
How a parent at that time never heard of Dr. Bernard Rimland is beyond me. After cleaning herself up the author turned to religion attending meetings with groups praying for Georgie. One female member of the congregation accompanied Annabel to the institution. After observing Georgie this woman gave some sign and the author mentioned how Georgie found hope after that visit.
It certainly seemed to me that the author would not act on her own parental instincts and needed reassurance for every move and then it even took others to persuade her to remove Georgie from the institution and try the auditory training by Dr. Berard. While Georgie was at the institution her Mother met and married Peter and had two more children.
The author actually pondered several times leaving Georgie at the institution and starting her own life with her new husband and children. She was not as devoted to her daughter as she wanted to have a normal child in her new son and not risk her daughter coming home and possibly hurting her baby.
Once Georgie received the hearing tests in Switzerland her whole life changed, she had friends, learned a new language, participated in sports and seemed like a normal teenage girl. While being institutionalized Georgie was verbal and apparently behaved well at home during visits, but when back at the facility she tried to commit suicide and had major behavioral issues.
After the auditory training (AIT) that Dr. Bernard performed Georgie was able to explain to her mother how life appeared to her previously. It turns out everything focused on her senses and hearing. At the institution they made her take part in socializing and being with the other patients. The noise would be so intense she would run and pound on walls and windows to try to escape the noise. At home she could tune things out like the television by closing her door. From a very early age everything affected Georgie differently, even cuddling her mother was impossible due to the rhythm of her breathing.
As the parent to two children with autism I did learn a great deal about the auditory aspects, but this was due to Georgie sharing her personal experience and not anything the author shared as the parent. All those years Georgie just assumed everyone saw and heard things the way she did, but she was crazy for not being able to handle these issues in the same manner.
On one hand I was truly disappointed in the first section of the book after reading the suffering Georgie had to endure due to no one researching further her issues. I was questioning the author remarrying and starting another family when I felt she had abandoned and failed her daughter. The most shocking part within the book was when the institution contacted her ex husband, Bill to try to persuade him to keep her from taking Georgie out of the country. Bill had some relative look into the Dr in Switzerland and agreed with Annabel that this was worth trying. Had it turned out otherwise I would have been very upset and feel the professionals should have been punished for their wrong doing and interference with her life.
I do prefer books that have a positive outlook on autism and not those that base the outcome on a miracle. Although this is one of those in some aspect, it was still a worthwhile read to know firsthand what the journey has been like for others. But my children are autistic and from what I gather always will be since I am not looking for a cure, but do hope to actually hear the sound of my childs voice one of these days.
As a reader I cared about Dotsie and Georgie and was heartbroken over the death of one and the lost childhood of the other. I came away learning more from the trials and tribulations of this family and know what to avoid when pursuing therapies and searching for schools for my children for future reference. I am glad that my children are being raised in these times and feel it is important for other families to keep notes on our children as we raise them to help others after us. Again these two books I read, The Sound of a Miracle touched briefly on AIT, while From Tragedy to Triumph was based on DTT. With the spectrum of autism being so broad some parents will find success with diets, enzymes, chelation, ABA, AIT, ADAM and whatever else is being promoted as a cure all for autism.
Our story will be told soon with the premise focused on the joys of raising autistic children and how to enjoy the life you have.