When my daughter, Anna, was diagnosed with childhood apraxia of speech in October, 2008, my first impulse was to go online and find out as much as I could about it. I remember thinking it would be a great idea to have a book for parents like me dealing with this unfamiliar yet all too common disorder. I would later embark on a different writing project, relating our personal experiences with Anna’s cleft lip surgery and apraxia diagnosis and my growth as a father, but as for a book on the nuts and bolts of apraxia, that idea left my mind almost as soon as it entered it.
Thankfully, for those dealing with this diagnosis today, another parent decided to follow through on this idea. I’ll let Leslie Lindsay, author of Speaking of Apraxia: A Parents’ Guide to Childhood Apraxia of Speech, tell the story in her own words:
“There isn’t a single book out there for parents on apraxia,” I complained to my daughter’s SLP. “I know,” Ms. Jen replied. “There’s not much out there.”I went on to explain that I just wanted a book, a real life book, I could hold in my hands and read and go back and refer to if I needed. I wanted a comprehensive guide that would start at the beginning and cover the definition of apraxia, what caused it (even if it was a bunch of theories—I didn’t care—I wanted something, anything), and what I could do about it. Most of all, I wanted something I could relate to.
Ms. Jen listened like any good therapist or friend would do. When I was done with my wish list, another therapist chimed in, “Sounds like a job for you.”
(Speaking of Apraxia, p. 367)
Thanks to Lindsay’s idea, and the encouragement of her daughter’s therapists—and her husband—this book exists, and it’s great one. Speaking of Apraxia is exactly the book that Lindsay wanted: a comprehensive guide that walks parents step by step through the experience of having a child with apraxia of speech, and a thorough reference that those same parents can consult over and over again.
As I read this book, I found myself retracing the entire journey Julia and I took together with Anna beginning over four years ago—her diagnosis, her therapy, and all the things we did at home to reinforce her progress—it all came back as I followed Lindsay through the steps she and her husband took with their own daughter.
In Section One, titled “Tell Me More – The Straight Scoop on Speech Basics,” Linsday defines childhood apraxia of speech, recommends steps to take if you suspect your child has CAS, and describes the first appointment with a speech language pathologist. This is the information I would have loved to have together in one place as we traveled to Doernbecher Children’s Hospital that rainy fall weekend for her initial evaluation.
In Section Two, simply titled “Now What?!,” she covers the apraxia diagnosis, the theories of what might cause CAS, and everything you need to know about speech therapy. Her descriptions of therapy sessions matched our own experiences well, and again, would have been helpful to prepare us for what we were to deal with. She also lets you off the hook for not being able to answer the question “What caused my child’s apraxia?” She outlines the prevalent theories, but admits that no one really knows, and that makes it okay for you not to know either.
Section Three, “Helping Your Child” is the heart of the book and the longest section. Here Lindsay covers everything you can do at home to help support your child’s progress in therapy, from an extensive list of activities—many of which we tried with Anna—to suggestions on creating a language rich environment, to alternative therapies, this chapter is loaded with a wealth of great ideas. I guarantee you will go back to this chapter over and over again. It alone is worth the purchase price.
Section Four, “Off to School,” covers the exciting and scary transition to pubic school, focusing on socialization and preparing your child to learn to read. Unless your planning to homeschool, this is a transition you will have to make at some point. In our case, we enrolled Anna in a preschool specifically designed for children with motor-speech disorders while teaching her pre-reading and math at home. This worked for us—it gave her a year of classroom experience with other children like her before we introduced her to a half-day public school Kindergarten in September, 2011. She’s now about halfway through first grade and has settled into a full-day schedule with no major difficulties. This path worked for us, but all parents need to choose the way that is best for their child, and the chapter on school preparation will help with that decision.
In this section, Lindsay also focuses on reading and handwriting issues. Many children with apraxia struggle with reading, so she spends the bulk of a chapter on this subject. Anna was the exception, she’s always been an advanced reader for her age, but in reading through this chapter I realized that her success was due to the large amount of reading we did with her. I’m familiar with at least half of the books Lindsay recommends—they are great choices—and while every child won’t advance as quickly as Anna will, their reading will improve by following her recommendations. Anna’s struggle has been with handwriting, but she is making excellent strides with her occupational therapist and will have access to assisted technology as her writing assignments increase in length and complexity.
Section Five, “Coping and Hoping” aims to help parents, siblings, and the CAS affected child learn to cope with their feelings, looks ahead to the possibility of resolving apraxia, and gives examples of how to network with other CAS families. These are all things we figured out as we went. Anna is incredibly outgoing—I think she got her amazing personality as a gift to help her cope with her apraxia—but we still had to deal with cruel remarks from other kids. We also discovered CASANA and the annual Walks for Children with Apraxia of Speech—both of which are listed in this section along with many other great resources.
The book as a whole is very well-organized. Each chapter opens with a short bullet-pointed sidebar titled “The Nuts and Bolts of This Chapter” and concludes with a short chapter summary and a list of recommended resources. Lindsay highlights the relevant sections of each chapter with clear headings, helping even the most stressed out parent easily find needed information, and she includes a thorough index.
Within each chapter, Lindsay also includes sidebars titled “Parents Ask” with common questions related to the chapter topic, and “Parents Say,” where fellow parents of children with apraxia related their own struggles, challenges, and small victories. Many of these little “micro-stories” will sound familiar, and remind you that you are not alone.
Speaking of Apraxia is a thorough step-by-step guide and a fabulous resource for parents of children with apraxia. It combines information culled from hundreds of books and websites in one clearly organized and easy-to-navigate volume. It is the one book every parent dealing with this difficult and challenging motor speech disorder should own.