As I am the parent of a child with a disability, I love to read true stories of other families raising special needs children. There are not many books out there written by the parents of disabled children; they are way too busy working with their child! I ran across the name of this book ”Karen” while I was looking for something else on a message board that was discussing it. I am very glad that I did. Even though this was written in 1952 and many changes have been made in society and laws since then, the experiences and feelings of this family are really no different from today! Our children with special needs still have a hard time being accepted in society and the schools, while legally obligated to provide education, have to be taken to court in many cases.
The name of this book is ”Karen” after the Killilea family’s daughter Karen who was born with cerebral palsy. It was written by her mother who was really ahead of her time: She advocated for major changes in society and legally for special needs children, taught Karen academically at home, and did therapy at home with her. She starts the book at the time of Karen’s birth. This part broke my heart. The doctors said nothing could be done to help this child, that she had no mentality and should be placed into an institution. Mrs. Killilea refused to accept this answer even though she knew little of cerebral palsy and continued to take her new daughter to different specialists. They drove hours to see the doctors only to be told that some would not even see a child with cerebral palsy. Finally, they did find a wonderful doctor who really cared about Karen. The family would make frequent visits to see him for new braces.
All through the book “‘Karen,” Mrs. Killilea talks about her advocacy in starting different support groups for families and the way she was able to get the Cerebral Palsy Association started. Her daughter is shunned by many, even the neighbors complain when Karen is seen playing with other children. Dentists would not treat her as it was too time-consuming and one dentist told another family with a child who had cerebral palsy that it was embarrassing for the child to be in the waiting room. Since they could not find help for their child, they started coming up with ways to help her themselves. From doing leg exercises to strengthen and reduce the tightness in the muscles to a button board for fine motor skill practice.
Many of the things they did to support Karen’s independence made me uncomfortable, but it is hard to judge sitting from here! Only a parent of the specific special needs child knows what that child needs. Every child is different, just as typical children have different fears, wants, and needs. One particular time that made me feel uncomfortable was them putting marbles in the sand and then continuing the marbles into the water….having Karen crawl into the water and eventually putting her face in the water to retrieve the marbles so she would not be afraid of the water. Her mother was always thinking up new ways to challenge and strengthen Karen’s mobility. The specialist is amazed each time Karen reaches a new milestone: talking, walking, reading, and more. Karen proves all of the doctors wrong about her abilities!
Even with all of this going on, she had other children as well. One other daughter was often sick and had to stay in bed for long stretches and one son who was always in trouble, but loved Karen to death! As well as an older child that they adopted. She worked very hard caring for them all. She and her husband chose from the beginning to think of Karen’s needs not just physically but spiritually, mentally, all of her needs. This is whole body care before the medical community ever recognized it! Her husband would build equipment in the house for therapy needs such as a walking area with bars. Their house had many stairs and as Karen got older, it became harder for them to carry her up and down all day long. The book ”Karen” ends with Karen learning to walk upstairs herself (it took her 25 minutes) and being able to write herself. Writing was incredibly difficult and so frustrating for Karen and she had wanted this more than anything. “I can walk, I can talk, I can read. I can WRITE. Mom Pom, I can do ANYTHING!”
I really enjoyed this book even though it depressed me thinking of how hard special needs children had it back then. Many of the phrases used in this book to describe cerebral palsy and other conditions are not used today. Also spanking is not a recommended punishment now , but was back then so it is mentioned in the book. The joys expressed by this family when their daughter reaches what was supposed to be an impossible milestone is heartwarming and will be recognizable to anyone with a special needs child! I really loved her mother’s determination even through the many years of seeing little improvement in Karen’s mobility and their optimism and upbeat attitude at treating the whole child. A book that will captivate you and put a smile on your face; it did for me!
More from this author:
Learn How to Advocate for Your Disabled Child or Yourself: Sign Up for Partners in Policymaking
A Review of Louder Than Words: A Mother’s Journey in Healing Autism by Jenny McCarthy