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.
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I have to place Fighting for Tony in the same category as two other books I recently read that were true family stories from Mothers of children with autism. 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.
While reading through the book I had to sneak over to amazon and check out some reviews to see if the abuse was ever going to end. Thankfully there were a few honest reviewers that mentioned the abuse I was currently reading and how it only lasted the first half of the story.
As I was 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. This outraged me so much that I just had to finish reading Fighting for Tony.
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."
So Mary packs the kids up and heads back home. Turns out Rich has the same thoughts. " Why do you think I stay out of his room at night when he's screaming? Rich answered. I'm afraid I'll hit him and I won't be able to stop. The only way not to beat him is to make a rule that you won't even hit him once."
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.
Mary and Rich ended their marriage and life for Rene and Tony was different but better with each parent getting a break to recharge while the other was with the children. As Rene grew older she showed a keen interest in Tony and the two were getting closer. Tony responded to Rene and referred to her as "Baba" and followed her everywhere. They shared their toys and had their own language.
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.
Mary went on to experiment with vitamins and then they attended a workshop as a family in another State. They were shocked to see children as old as fourteen rocking in the corner.
Tony was in a special needs class and Mary wanted him in an integrated classroom and even volunteered in his class to help. Then toilet training was introduced and problems arose with the teacher and Mary.
Mary and Rich started dating others and Mary was gaining knowledge from a Doctor at work who had recently lost his son to heart disease. Rumors circulated that an affair was taking place, but they were just friends. This Doctor helped her get placement for Tony. Mary refers to a book she calls fascinating, The Ultimate Stranger: The Autistic Child and makes more connections with her son regarding vision, sense of touch, smell and sound. Mary used the window fan in Tony's room to help him sleep and bought an aquarium for him to watch. Then his self-stimulating behaviors started to diminish.
It seemed that the light went on way past when it should have for Mary and she should have been focusing on learning and reading books much sooner than she did. One summer when Rich took one month break in the summer things spiraled out of control with Rene and Tony. Mary found a day-care center that was open around the clock so she could work the night shift. Turned out her kids kept the other kids up all night and Mary in turn paddled their bottoms on two occasions.
Then the neighborhood kids started stealing items from Mary's yard and home with police coming several times and then they had to move. This was a dangerous time for the family with teenagers and violence. Soon after they stayed at Rich's apartment and their lives resembled a regular family. They both decided at the same time to give marriage another shot so they remarried.
During some camping trip Tony had milk by accident and went down hill. Suddenly the revelation that milk was the culprit and Tony was a normal child did not really jive. There was never any mention of how they made sure milk and other food items were not given at school.
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.
Reading through Fighting for Tony also reminded me of abuse I received from my own Mother during the 1970s, seems that was the generation to get away with such parenting.
I would not want someone who just received a diagnosis to read such a book or to think such horrid thoughts just because their child is autistic. In my opinion there is no cure and the focus should be on the child and the life they are leading here and now. I have read quotes online from adults on the spectrum and they do not like reading how parents are trying to change their child. The books I gain insight from are those written by parents that just want to share about their child, and books written by adults within the spectrum offering their experience to the next wave of parents.
Fighting for Tony includes eight pages of black and white photos of the family through the years. The most important lesson from reading this book is to love your child and treat them kindly.
The Sound of a Miracle
Autism: From Tragedy to Triumph
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