What I Wish I'd Known about Raising a Child with Autism

What I Wish I'd Known about Raising a Child with Autism: A Mom and a Psychologist Offer Heartfelt Guidance for the First Five Years



Bobbie Sheahan
Kathy DeOrnellas, Ph.D.
 
Future Horizons (2011)




Before starting, I must make a few disclaimers. One is that I was asked to preview this book by the author. I was delighted to be asked and am not receiving any type of compensation for this blog entry. Second, although I am a physician, I do not practice any specialty which addresses the diagnosis and management of autism; however, I do have a lot of experience with autistic children. As a pediatric anesthesiologist, I care for autistic children who require anesthesia for surgical, dental, and other procedures. More importantly, as a parent, I was blessed with an autistic child for fifteen years. Carolyn and I were blessed with our third son, Theodore, who passed away in April, 2008. This experience, as Bobbie Sheahan would say, does not make me an expert, but does help when reviewing this book.

In addition, this book represents my views and not those of my employer.

What I Wish I’d Known About Raising a Child With Autism was written by Bobbi Sheahan, a lawyer who is presently a stay at home mom, and Kathy DeOrnellas, Ph.D., a psychologist who treats autistic children. Mrs. Sheahan has a daughter, Grace, with Autism Spectrum Disorder (ASD) who is now seven years old. This book was inspired by the many challenges she faced in searching for a diagnosis as well as a treatment for Grace. This book was written to help those parents who are beginning to notice that one of their children appears to be ‘different‘ and don't know what to do about it. As Bobbi Sheahan says in the preface, “we are here to hold your hand as you walk through a door that you and your child didn’t choose....” Another reason for writing this book was to reassure parents who may feel overwhelmed with the behavior of an autistic child. To finish the sentence quoted above, “...come on in, there are lots of us here waiting for you.”

This book consists of thirteen chapters, and both authors contribute separately to each chapter. Mrs. Sheahan writes mainly from her own experience and research in dealing with Grace, while Dr. DeOrnellas provides her expert opinion to corroborate what Mrs. Sheahan has stated. I really appreciated this; especially when references cited in are listed at the end of each chapter. I don’t like reading things where it appears that data has been ‘pulled out of midair.’

The first three chapters deal with the basics of autism. In chapter one, Mrs. Sheahan relates some of her family background as well as the circumstances of her pregnancy and birth of Grace. She describes how Grace was different from her older sister, how she was quiet and easier to manage as an infant. Chapter two is all by Dr. DeOrnellas, with terminology and statistics discussed, including the cost for the treatment of autism. That was rather sobering. In chapter three, Mrs. Sheahan begins to realize that Grace is different, and talks about the difficulty of coming to grips with having a child who is not considered normal. Finding a professional who could help her was very difficult, and the lessons learned from that effort are discussed in this chapter as well.

Chapter four has a section in it called ‘a completely non-scientific discussion of the origins of autism, with no conclusions reached.’ This is a good description for this chapter. Some of the theories mentioned are very thought-provoking.

After this journey into the theoretical, the fifth chapter delves into the practical - and sometimes unsavory - aspects of parenting an autistic child. Food preferences and abnormalities, such as pica are discussed, as are challenges with maintaining good oral hygiene. The extensive efforts needed to childproof an autistic child’s house reminds me that raising an autistic child involves all members of the household, especially the siblings.

Chapters six, seven, and eight deal with some of the more striking characteristics of autistic children. Communication and social skills, pain tolerance issues, and the need for a routine are all discussed. Here, Mrs. Sheahan makes a recommendation which I think should have come at the start of the book: keep a journal. This is a great idea, for any parent, but especially for parents of children with autism. Chapter eight also contains some great insight into the mind of an autistic child:

“What the books of Temple Grandin and many conversations with Dr. DeOrnellas taught me was that much of Grace’s behavior is motivated by anxiety. I started to write “inexplicable behavior,” but it’s quite explicable; I just need to apply myself to learning my child’s language. She speaks more with actions than in words, and she doesn’t do things just to frustrate or confuse me. She does things for a reason, and if I am respectful of the fact that the reasons are perfectly reasonable to her, I just might learn what that reason is.”

This is still good advice.

Chapters nine, ten and eleven deal with education issues, siblings - especially sibling rivalry issues, friendships, and dealing with the world in general. I had to laugh when Dr. DeOrnellas was discussing animal therapy with autistic children and mentioned a family who had moved from California to North Texas and expected that their child would be able to continue ‘dolphin therapy.’

Chapter twelve is for parents, especially mothers. Mrs. Sheahan makes the point that one parent cannot do this alone; husbands have to be involved in the care of an autistic child. Other means for help are out there as well, but none is as important as the love between and husband and a wife directed toward the care of their children.

There is No Finish Line is the title of the final chapter, which points out that raising an autistic child will probably never end. They may never be able to leave your care. This thought kept going through my mind as I read this book, for the Sheahan family has not gone through that time of life known as adolescence with an autistic child.

In chapter twelve, Mrs. Sheahan mentions one of the greatest blessings of having an autistic child, one which I have seen in our own life:

“One of the major upsides of our situation is that we have the nicest people in our lives because everyone else has fled.”

It’s true. Some people can’t deal with someone else’s autistic child, and those who can are really practicing charity. Mrs. Sheahan gives many examples of people who understand it when Grace does odd things, or when the whole family has to leave a party or other social engagement suddenly. Those people really reflect the face of Christ when they let someone like Grace into their lives.

I liked this book. I liked the organization of it, as it went from Grace’s birth, early development, and growth. Along the way, the various challenges which autism brings to life were discussed, including Dr. DeOrnellas’ input as a professional. This gave credence to Mrs. Sheahan’s observations. I appreciated the references at the end of each chapter, and the bibliography at the end of the book gives many great suggestions for further reading.

One thing that took a while for me to get used to was Mrs. Sheahan’s sense of humor. There were times when I thought it was a bit much for such a serious subject. After reading half of the book, I decided to step back a moment and stop thinking about why I did not care for her humorous remarks, and instead ask myself why she included humor in this book. The answer came, almost instantaneously, that something as daunting as raising an autistic child requires that a parent keep a sense of humor. There are enough tears and heartaches in raising a ‘normal‘ child, let alone one with autism, and humor provides a tremendous consolation.

I would recommend this book without reservation. It serves as a good book for those who are considering that their child may be autistic, or have children newly diagnosed as autistic. This book would be a good beginner book for parents who want to know about autism, and a great source for further reading on the subject.





I have tried (unsuccessfully) to write this review without bringing my own experience as a father of an autistic child into it. Now that the review is over, I will break that vow. While reading this book, I was reminded of so many things which Theodore did, and how hard it was to deal with him at times. But more often, I recall the things he did which gave us a laugh, or great joy. He really loved to make us laugh. With time, the memories of the heartaches fade more than the laughter. For us, the ‘Finish Line‘ was at fifteen with Theodore, which ended suddenly on a Thursday morning in April, 2008. For those of you with autistic children, I want to tell you that there really is only one thing harder than living with the cross of an autistic child: living without him.

Stephen M. Donahue, M.D.
March, 2011