Guest Author - Bonnie Sayers
Not all book reviews give glowing recommendations. I have read a number of books pertaining to Autism Spectrum Disorders - from the parents, Doctors, Therapist and those who are on the Spectrum.
Some titles and descriptions of books gloss over what they state the book is about. I found that true in the three books I am not recommending in this article. By all means make up your own mind based on the reviews and read other reviews online to see if the books are all that they claim to be.
Your reading criteria may be far different from mine and you may just want to read these books to see for yourself what it was like years ago for these parents who also have a child on the Autism Spectrum. But as an avid reader on the subject I feel I must warn others, especially those who have just received a diagnosis - please refrain from reading such upsetting words so soon after learning about autism for perhaps the first time. I hope my review will suffice and you will not have to endure those brutal written words.
Fighting for Tony - In all honesty I believe the title should have been Beating up on Tony. The good news is this book is out of print, the bad news is I read the whole thing that is based on a true story. The first half of this book is filled with profanity and abusive parenting. Dare to read if you want to make sure your parenting skills are adequate. The connection to a milk allergy was long in the making, but missed by parents.
Everyone has a story to tell, but after reading Fighting for Tony I have to say that the author, Mary Callahan has some nerve to use this title. This was one of the hardest books as a parent I have ever read through. The time period covered is late 1970s through the 1980s, when life was much different raising an autistic child.
The Sound of a Miracle was touted as victory over autism with auditory training. Then there was Autism: From Tragedy to Triumph discussing the cure via Applied Behavior Analysis, known as ABA. Now with Fighting for Tony we have the misdiagnosis due to a milk allergy
These three books were from the same generation having to deal with Refrigerator Mother theories and each of the families went through divorce. In my opinion all three women were profiled poorly, one was a chain smoker, another could not get her act together and with Fighting for Tony the language used in front of children, the thoughts shared and the continued abuse toward the child was downright appalling.
The reason that led me to finish this book in the first place happened while browsing around Amazon. I was shocked to learn that the same author who abused her child in Fighting for Tony written in 1987, authored another book in 2003 entitled, Memoirs of a Baby Stealer: Lessons I've Learned as a Foster Mother. That was enough incentive for me to finish this book to learn the outcome of this family. I had so hoped the children would be taken away from them.
Tony was born in 1978 to Mary and Rich. After one week home from the Hospital Tony had crying spells that lasted hours. His six-week checkup showed nothing wrong, yet the crying would continue nightly for hours. Mary thought that nervous mothers made nervous babies and cringed each time the crying would start. Rich was not interested in having kids but Mary prevailed and they agreed to have two children. Mary found out she was pregnant when Tony was just seven months old and still crying four hours out of each day. The crying would start with interruptions like when a plumber entered the house or a barking dog while taking his nap.
"There were times that I had to put Tony in his crib and walk down the block until I couldn't hear him anymore, just to keep from hurting him."
Although hard to believe, Mary was a Registered Nurse working in the Pulmonary unit. As a result of several ear infections Tony was on antibiotics often and at fourteen months old had an operation called a myringotomy.
The crying still continued with Mary noticing how Tony never looked up when she left for work and said good-bye plus the way he played with his toys. Mary had to attend a conference and brought Tony with her. He ended up getting really sick, they thought it was asthma but once back in Albuquerque the symptoms disappeared and never returned.
Tony was seventeen months old when Rene was born and not playing with other kids appropriately. Rich thought Mary was looking for flaws and hoped that with caring for Rene the problems surrounding Tony would subside. Tony showed no interest in Rene and Rene helped boost the parenting confidence that Mary lacked.
One of the parents of a playgroup mentioned to Mary that she needed to get Tony tested at a Mental Health center. Mary was worried that Rich would be upset over this, but she went anyway and faced her fears. In her mind either she or Tony were at fault, so either she was a bad mother with a good child or a good mother with a bad child.
"I was so angry that I walked over to the crib and slammed Tony down onto the mattress. He popped up, screaming in my face, without missing a beat. I slammed him down again. I started talking quietly through clenched teeth: "You stupid, xxcking little brat. Don't you ever shut up? Don't you know I can't stand you anymore?"
The child development specialist was the first person to mention autism to Mary, who experienced terror after hearing this and some sort of psychic pain. The diagnosis was early infantile autism and functionally retarded. It was at this point in Fighting for Tony after the diagnosis that the profanity and abuse started.
"We wondered if Tony really cared for us at all, or if we were just willing slaves. I compared him in my mind to a cat, aloof and self-satisfied as long as his basic needs were met."
Mary described her family as one wounded cub, one normal baby and a depressed husband. Mary was overcome with sadness while Rich retreated deeper into his depression. Rene was the salvation and the one that Mary turned to when she needed comfort. Mary started doing more for Rene even though these adventures were feared by Tony who did not need the break in his routine. She packed the kids up and went to New Mexico to visit a friend. Tony screamed all night and the verbal abuse was evident in front of her friend who did nothing.
"I found myself picking Tony up out of the crib and shaking him. Shut up. Shut up. Shut up I snarled. Don't you dare smile at me you brat!" I yelled. Just then Kathy walked in. I can't stand this anymore I told her. Kathy, I'd love to stay, but if I do, and he keeps us up again tonight, I'll kill him."
The family then moved into the playroom at night to sleep and left Tony in his room screaming for hours. They even used a loud window fan to drown out his noises, but his red face each morning made Mary feel heartless and guilty.
They tried Benadryl and then Codeine to get Tony to sleep at night and had been through five Pediatricians in his first two years of life. One day Mary recalled that Tony had slept in the car on the ride home so she set out to take the kids for a ride. Something in a store set Tony off and both kids were crying by the time Mary got them in the car.
"I picked up Renee with deliberate calm and strapped her into her car seat. I strapped Tony in just as calmly. Then I slapped him across the face three times. It felt good to see those red marks on those fat little cheeks. God daxx him. I stood up to see several people in the parking lot looking on in horror. As I drove home, I checked the rearview mirror for a police car. Strangely enough, Tony went right to sleep after I slapped him, the red marks still visible on his angelic face, along with his bruises."
They even tried Valium on Tony to get him to sleep. A Doctor had told Mary to consider institutionalizing Tony, and a discussion between Mary and Rich went like this, "No, he's not going to be strapped in a metal crib somewhere. I'd rather see him dead than strapped down, Rich said quietly. Instead of horror, I felt a slowly growing sense of relief. There was an alternative after all. We could kill him. I was the first to say it. We could, Rich answered. You could get something at work, couldn't you? An injection of something? Yeah, but would it show up on autopsy. And if the drug didn't the needle hole would. He could have an accident, like drowning in the bathroom or something. Rich said. We'd go through life knowing we've killed our own son. We'd know we did it for him. We could never get a divorce."
This was only page 58 of a 170 page book. I purposely only read Fighting for Tony while waiting for the bus or at the laundromat, because this dialogue was so disturbing to me. I needed constant breaks from the tone of these parents and could not comprehend these thoughts shared on the pages of the book.
During a Phil Donahue show in 1980 Mary learned about the effects of sugar in kid's diets. She experimented with removing wheat, chocolate and milk for three weeks and noticed that Tony slept more at night. The next step in the testing process is to add each food back in to see the reaction. This is when she noticed a rampage in one hour after consuming milk. Mary replaced the cow's milk with soymilk and consulted with the Pediatrician and Allergists who said there was no connection to the milk.
It is amazing that no one ever reported Mary for abuse to her children. She had her children living in a bad neighborhood, all their items were being stolen and it took a long time for them to finally move or as she wrote they were driven out of town.
The back cover states this is a book about misdiagnosis and how a Mother brought her child back. That is a bunch of bull based on the book I read. There was no real evidence to this reader of Fighting for Tony. There is obvious distress by both parents in learning about autism and their fears and guilt play a big role in their daily lives.
The full review can be found on Epinions.
The Sound of A Miracle: A Child's Triumph Over Autism. This is a true story with raw emotions, but too many stories within the book to follow. I found it to be an interesting read to learn how autism was diagnosed in the 1970's and to learn from the author’s mistakes in not accessing therapies sooner.
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 mother’s 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 Mother’s 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.
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. The full review.
Autism: From Tragedy to Triumph This is an interesting first hand account of Ivar Loovas and his techniques for reaching autistic kids. Part One covers the long road to diagnosis with Part II covering treatment and includes excerpts from the parent therapy log. There are also a few black and white photos in some of the chapters. The photos did not really have any affect on me and could have been left out. Also quite bothersome to this reader was the habit of smoking cigarettes that Julie had, plus the fact that never was this discussed on how detrimental it could be to her children.
I would advise future readers of Autism: From Tragedy to Triumph to read the foreword after the book has been finished. I found it confusing reading about the test scores and mention of whether Drew was actually autistic or not better digested after learning the family dynamics beforehand. It is hard to comprehend on one page the dedication to several people who volunteered in the fight for Drew’s life and then learning he has been cured and no longer viewed as being on the spectrum. I find that hard to believe as a parent and really did not focus on that aspect.
The only parts I could relate to within the pages of Autism: From Tragedy to Triumph was doing most of the work herself by seeing professionals and caring for the daily lives of her children and the hassle of driving on freeways with a child that might open a door or get out of their seat. I did feel for Julie when they first started working at the autism clinic at UCLA with her viewing from the two-way mirror and cringing when her son would cry and they would continue at the same pace.
Dr. Lovaas comes across as a caring and understanding professional and one of the first Julie came in contact when learning about autism. I did not agree with the requirements they maintained for being in the program. Julie was not allowed to mention that Drew had a disability when she enrolled him in school. I am not sure I would have done the same thing, but she maintained that secrecy and Drew supposedly turned out to be a normal child.
The book really does a good job of sharing the struggles on a daily basis in the early years while raising three small kids and the sacrifices the siblings had to endure. In order to enroll Drew in the autism program Julie was informed her other son who was younger would have to be in a daycare program so she could concentrate fully on Drew. When her daughter ended in the hospital due to an accident in the bathroom she had the therapy continue in the home for Drew while she stayed at the bedside. The husband never did much to assist and was not mentioned very often.
I would have liked to read more about the progress Drew made with the therapy. It just seemed to focus much on the autism in the beginning sharing the habits of the child that clearly indicated he was autistic and then after an unspecified amount of therapy he no longer had the diagnosis. Apparently I missed something in the book to have it happen so quickly. I was not happy when I read how to keep Drew focused on therapy Julie would not be able to feed him in the morning and the appointment was set closer to the afternoon. The therapy seemed very rigid and not flexible with more focus on that than the child, but they triumphed in the end so what do I know. The full review.
Thinking in Pictures - Temple Grandin book review
Ian's Walk - Book Review
An Impression of Autism from a kid on the Autism Spectrum
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.