When Leslie Lindsay’s daughter was diagnosed with childhood apraxia of speech five years ago, Lindsay threw herself into learning as much as possible about the neurologically-based motor-speech disorder. Now she’s taken that research, as well as information gathered from speech-language pathologists, conferences and a support group, and written “Speaking of Apraxia: A Parent’s Guide to Childhood Apraxia of Speech.” It was just published this month.
Lindsay, 33, was a former child and adolescent psychiatric nurse at the Mayo Clinic. She’s now a stay-at-home mom and writer who lives in the Fox Valley and blogs at leslie4kids. Her husband Jim is a senior researcher at the American Institute for Research; their daughters are Kate, almost 7, and Kelly, 5.
Read on to find out why we think Leslie Lindsay is a Go West Mom You Should Know.
Q. Can you tell me about “Speaking of Apraxia”? Why did you decide to write this book? What do you hope it accomplishes?
A. When my daughter Kate was diagnosed with childhood apraxia of speech (CAS) in 2007, I was completely dumbfounded. Like most, I didn’t know what CAS was — or how to help my daughter. I began reading all I could on the disorder and became frustrated, discouraged, and yet wanting more — as ironic as that seems! The Internet is great, but you can really drive yourself nuts trying to read and decipher all the “hits” you get on a Google search.
I checked out really old-school speech pathology books from university libraries, attended conferences, interviewed SLPs (speech-language pathologists), facilitated my own apraxia group, “Small Talk: All About Apraxia” consisting of parents of children with CAS. I wanted to connect with others and help them on their apraxia journey. Apraxia can be such an isolating diagnosis because not many kids have it. As a parent, you are just sort of stumbling along. The book is divided into five sections, which sort of mimic that of the five weeks my group met:
- I: The Straight Scoop on Speech Basics: CAS definition; An Overview of Speech & Language; Where to Get Help and What to Ask; Your First Appointment with an SLP
- II: Now What?!–Getting, Coping with and Understanding the Diagnosis; Health & Genetics; All about Speech Therapy
- III: Helping Your Child: Complementary and Alternative Medical and Treatment Approaches (Diet, Music, Movement Therapy and More)
- IV: Off to School: Getting Ready; Special Education Ins & Outs; Phonological Awareness; Reading Issues
- V: Coping & Hoping: Dealing with Emotions and Family Life; What the Future May Hold; Networking, Support Groups, and Advocacy
- Appendices: Information on insurance, summer camps and enrichment programs, speech-language milestones, and a glossary of terms
My hope is this: That parents feel empowered to help their kids with their speech issues — whether it’s apraxia, or not — and that they have a better understanding of the disorder. Also that speech-language pathologists know better what it is like to parent a child with CAS, and other professionals, such as MDs, RNs, OTs, have more knowledge on this disorder.
Q. Can you tell me about Apraxia? It’s not something that I had heard about previously.
A. Not many people have, in all honesty! Unless, of course they have a child or know a child — say a niece or nephew — with it. Basically, CAS is a neurologically-based motor-speech disorder. The brain and mouth can’t coordinate the complex thoughts and movement required for speech. Kids with CAS know what they want to say, they just can’t get it out. They grunt, they fuss, they gesture, they meltdown. But they can understand ALL you say to them (developmentally-appropriate, of course) and they are smart! CAS is different than “just” a delay. A delay is when all systems required for speech are slow, but eventually “catch-up.” In CAS, it’s not that things are slow, they just aren’t working. It takes time to recover…the best advice by the American Speech-Language-Hearing Association is “frequent and intense [speech] therapy.” For us, that equated to two to three sessions/week of an hour each for about 2.6 years.
Q. How can parents order “Speaking of Apraxia?”
Q. Your professional background is that of a nurse. Do you think that medical background better prepared you when Kate was diagnosed?
A. Yes, of course! When Kate was diagnosed, I thought, “We didn’t learn about this in Nursing School!” I knew that apraxia meant “without praxis” [motor movement]” but I was still completely stumped. I had always enjoyed learning and with my background in psychiatry (which is also very much based in neurology), I felt like this was something I could tackle.
I also was familiar with some of the terminology — diagnosis, treatment, prognosis, etc. And I knew how to weed through information and get to the bottom of things. Other parents may not have those skills, since a lot of that is taught in nursing school.
Q. What was the hardest part of writing the book?
A. Looking back on it, I would say … nothing! It’s sort of like childbirth that way But in reality, it’s hard work!! There were times I just wanted to chuck my laptop out the window and burn all of notes and books related to CAS. I think being persistent is the key. There were also naysayers along the way … “This is a can of worms … you don’t know what you are getting into.” … “I hope this will be research-based…that is the only way I can support your efforts” … and some professional jealousy. I just had to chin-up and muddle through it.
Q. Can you tell me a bit about your children — their personalities and interests?
A. Well, Kate is a very fun, spunky and feisty little girl. She loves art and gardening and has really gotten the hang of reading lately, which has been a struggle. Kate continually amazes me with her imagination and creativity. She also is an Irish step dancer. Kelly is my little precocious one. Sometimes I wonder who is mothering whom! She is bright, inquisitive and very thoughtful. She loves animals and wants to be a vet when she grows up.
Q. How do you describe your parenting style?
A. I am a very hands-on, but not a “helicopter mom.” I am big into educating kids through play and making learning experiences fun. I teach a lot through example, role-play, and through books. Have a question? Look it up! Need help with a specific feeling or idea? Read about it. For example, the other day my oldest daughter was feeling a bit like the green-eyed monster when her sister went to a tea party and got glitter in her hair and got to wear fancy dress up clothes. We read a book about jealousy that night.
Q. What do you like most about living in the Fox Valley?
A. It’s got a good mix of “country” and forest preserves, parks, shopping, and yet it is close to the city with all of it’s cultural attractions. And we’re very happy with our school district; these teachers really do care about their jobs and their students.
Q. What’s next for you?
A. I am continuing to write! I really love writing and am retired from nursing. In fact, my next book (hopefully) is in the women’s fiction genre about a woman who is confronted with her first love — yet she is married and so is he — will they fall down that slippery slope? Can old loves be rekindled? Can you be “just friends” with a man? I have other (fiction) ideas as well … I’ve thought about a book, too, on hosting kids’ birthday parties, but I am a little tired of non-fiction for the time being.
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