Guest Post: A Parent’s Experience with Childhood Apraxia of Speech

Lucky us, we have another guest post today! This comes at a good time for me, because Cee was sick and home from childcare for most of last week, which was coincidentally the first week of teaching this term for me. It’s incredible how much 4 days of a sick kid can set you back. I’m still catching up on my teaching responsibilities and book project schedule, so I’m happy to have a few stellar writers standing in for me on the blog this week.
David Ozab is a local writer and father. We met last year at the only bakery in town that has both flaky croissants and a sandbox. A few months ago, I posted a review of a book about language development, Beyond Baby Talk. This caught David’s attention, because he has had a personal experience with his daughter’s language delay caused by Childhood Apraxia of Speech, a condition affecting somewhere between 1 and 10 kids per 1000. He is writing a book about it, and he shares some of his experience here for us.
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A Parent’s Experience with Childhood Apraxia of Speech

By David Ozab

“Don’t worry, she’ll catch up.”

I heard that sentence from so many parents around Anna’s second birthday. We were worried about her speech; she was talking all the time but we could barely understand her while kids her age and younger spoke clearly. “Don’t worry she’ll catch up,” people would say. I said the same thing to myself. I figured it would just happen. Her speech was like an out-of-focus photograph. Sooner or later, I thought, it would snap into focus.

My wife Julia wasn’t buying it. She thought something was wrong, and she was right.

We might have realized there was a problem sooner if she hadn’t talked at all, but she babbled constantly since she was a baby. She interacted with everyone around her, so we knew she wasn’t autistic. She understood everything we said, so we knew her language comprehension was fine. She even sight-read a handful of words. Granted, they were animal names and she didn’t say the names, she made the sounds. But she knew what the words were.

We would write on her Magnadoodle:

D-O-G

“Woof.”OLYMPUS DIGITAL CAMERA

C-A-T

“Meow.”

P-I-G

“oink.”

C-O-W

“Moo.”

F-R-O-G

“Ribbit.”

So we knew she was smart, but she wasn’t talking and she wasn’t catching up.

What we didn’t know was that Anna had something we never expected; something we’d never heard of.

Childhood Apraxia of Speech is a motor-speech disorder thought to affect between one and ten children per thousand. Kids with CAS don’t “catch up.” They need years of intensive speech therapy before their mouths can make all the complex vowel and consonant sounds that make up comprehensible speech.

CAS is a spectrum disorder with four broad levels of severity: mild, moderate, severe, and profound. Anna’s Apraxia was diagnosed as severe. She spoke a lot, but almost everything she said was incomprehensible.

We were around her all the time so in context we were able to make out a handful of words–mama, dada, Anna, duck, Elmo, orange. With patience we could figure out more.

Her diagnosing speech-language pathologist (SLP) only understood one word: “no.”

Anna was two-and-a-half. She was not going to “catch up” without help. In her case that meant speech therapy, twice a week for the first two-and-a-half years and once a week since she started Kindergarten.

She’s been in speech therapy for almost four years now and the difference is extraordinary. We understand her most of the time (80 to 90%) and even strangers get most of what she’s saying. She’s understood by her teachers, her classmates, and total strangers. She’s a bright outgoing first grader with dreams of being a wildlife biologist, or maybe a writer, or a photographer, or an actress (she changes her mind every few days).

She has a long way to go, facing years of speech therapy along with occupational therapy to help her through her difficulties with handwriting, which we think is related to her apraxia. But she’s smart and personable and the best reader in her class, and her therapy has helped her find her voice and express herself to others.

So if you’re worried about your child’s speech, if your child isn’t speaking at all, or if, like Anna, your child is talking all the time but you can’t understand more than a few words, don’t assume he or she will catch up. See a qualified, certified SLP. Some kids are slow to talk and will catch up. But other kids have motor-speech disorders and need help.

Don’t worry, but don’t wait either, because without help you child may not have the chance to catch up.

Do you have concerns or questions about your child’s speech? Please post them in the comments.

Looking for more information? The Childhood Apraxia of Speech Association of North America (http://www.apraxia-kids.org) is a great place to start.

And if you do have a child who’s been diagnosed with Aproxia of Speech, you should get a copy of Speaking of Apraxia: A Parent’s Guide to Childhood Apraxia of Speech by Leslie A. Lindsey, R.N., BSN. It is filled with great information and boasts an extensive bibliography.

About the author:

David Ozab is currently editing and revising his first non-fiction book, A Smile for Anna, which tells the story of his daughter’s cleft diagnosis and surgery, her difficulties with speech, and her incredible outgoing spirit through it all. His writing has been featured in Chicken Soup for the Soul, Catholic Digest, and Errant Parent, as well as on his blog, Fatherhood Etc. He lives in Oregon with his wife Julia, his daughter Anna, and two lop rabbits named Jellybean and Oreo.

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27 thoughts on “Guest Post: A Parent’s Experience with Childhood Apraxia of Speech

  1. Pingback: Guest Post: A Parent’s Experience with Childhood Apraxia of Speech | David Ozab

  2. Pingback: Speaking of Apraxia: A Preview | Fatherhood Etc.

  3. I have always given parents oral motor activities to do at home too which helps development go faster.Often the child will have limb apraxia as well which means an Occupational Therapist needs to be involved also.

    • The longest chapter of Speaking of Apraxia deals with home activities and lists tons of great ideas—many of which were ones recommended by her therapists. She’s also had small motor issues—though not gross motor—and is working on her handwriting with an occupational therapist at school. Thanks for reading and commenting.

  4. I have never heard of the disorder. Are there exercises parents can do with their kids at home to help develop their speech and fine motor skills?

    • There are lots of exercises that parents can do at home, but these need to be coordinated by a licensed SLP who sees the child regularly. Professional therapy is the key with Apraxia or any serious speech delay.

  5. Also, thank you very much for sharing our story and bringing awareness to parents like me who have not heard of speech apraxia.

  6. “Don’t worry” and “don’t compare children” are two of the most sanity-preserving mantras for parents, especially first-timers. But so are “trust your instinct” and “YOU know your child best.” Often these are contradictory pieces of advice, and learning to distinguish real concerns from garden variety parental anxiety the way your wife was able to do is one of the toughest things about parenting. There’s just no simple formula for doing so. Thanks for sharing your story.

    • Yes! Trust your instincts. You are your child’s best advocate. We learned that again last fall when we found the extent of the difficulties needlessly placed in her way regarding her handwriting. We took the initiative and she’s doing much better now. Thanks for reading and commenting!

  7. @Rebecca. Oral motor exercises have been shown in the research not to improve speech sounds. Doing this with kids with apraxia is unethical!

  8. If there’s something I hated hearing more than “he’ll catch up” was “he’s just a boy”. He didn’t have speech apraxia but he was developmentally delayed in other ways. I heard this from parents who had never met my son, and even from people who didn’t even have kids! I didn’t want to be That Mom who was panicking unnecessarily but my gut told me something was wrong. I will be forever grateful for my friend who had gone through something similar with his son; he listened to my concerns and told me to get help ASAP. Thank goodness I did.

  9. Really interesting. I am worried about my daughters speech, she babbles, says a few words but is nowhere near her peers. Every so often she says a new word, but never says is again….

    She is imaginative, friendly, confident and ‘chatty’ but no words. Everyone says ‘don’t worry. she will catch up..’ but I am worried, she is 2 and a half and shows little progress. We have taught her some signing and that helps her as she can now ask for things she couldn’t before- the speech therapist didn’t really say a lot- just said she should catch up and to allow her to sign- but that isn’t helpful… she has a lot of sounds but never gets them into clear words.

    I have been asking for help for ages, but nobody seems interested.

    • Please don’t give up. I’m not an SLP and I’ve not met you or your daughter, but she might have apraxia or a less severe phonological disorder. At two-and-a-half you’re still catching this early. Get a second opinion. Be sure you’re seeing a licensed SLP. Ask lots of questions and don’t let yourself be brushed off.

  10. @. Lena-oral motor exercises are not unethical ,don’t know where you got that info. There is plenty of research that supports this practice. But more than that I have seen it work for myself.

  11. Wow, this was great to read. I’ve had that same “something’s not right” feeling about my daughter since she was about 15 months old. At almost two years old I finally got her evaluated by a SLP from our state’s department ofeEarly Intervention, she told me she saw many signs of CAS (the first I’d heard of it) but since she wasn’t 50% delayed she couldn’t offer services, so she suggested I go to my insurance company next.

    The insurance speech therapist told me basically the same, except she says she doesn’t diagnose CAS until three or four years old at the earliest since children grow so much in speech during that time. She also suggested it might not be CAS, instead possibly a Motor speech disorder or speech sound disorder. She said no matter what it turns out to be, the therapy she would offer would be the same. I feel so frustrated because I feel like what I read on the internet doesn’t match what she says. And I can’t find hardly any information about what the difference between CAS and speech sound disorders or motor disorders are. We also live rural and I drive 3.5 hours round trip to take her to a 40 minute speech therapy appt that costs me a $50 co-pay (and my insurance will only cover eight sessions a year!) and honestly doesn’t feel that productive.

    Really, I’m sleep deprived with a new baby and I could go on and on, but here’s some specific questions I should get out before I overwhelm you (and me).

    Do you feel this book on CAS would help me even if my child ends up with one of the other similar diagnosis?

    Do you have any recommendations for where to go to read more about the differences between CAS and the other similar disorders?

    Part of the reason I’m confused about my SLP’s explanation that my child would need to be 3 or 4 to get diagnosed is because of accounts like yours that I read where two year olds are diagnosed and they always say “early intervention is key!” My child is now 27 months old and I guess I just crave an answer so I can go scour the world for education and support on that answer. Do you have any advice for me on that topic?

    Thank you for any and all help, I really do feel alone in this right now.

      • Sorry I just noted your child’s age. In this state there is a program called First Steps where therapist comes to the home starting at two. However I think you can do many simple things yourself by making your child aware of his mouth and by making him look at what you are doing with your mouth. You say look look watch my mouth -then make a sound. I start with s because more children seem to need that sound. S blends more often in particular. Sometimes public school therapists will work with you after school on a private basis.One in your area perhaps, They might negotiate a price without the insurance hassle.

      • Thanks for your response Albaugh, I am in AZ and there is no other program that I can find besides the dept of EI that will serve under age three. And EI said it’s hard because they measure language in general and my daughter is like David’s she speaks a lot she is just largely unintelligible to strangers or if the word has more than one syllabal. I am trying to network every connection I have to find a SLP that will let us hire them privately, but so far we haven’t been successful. It’s harder because of us living rural. And thanks for the watching the mouth ideas, we are doing that and I hope it’s helping.

    • So sorry for your frustrations. Insurance coverage can be tough. Even with a diagnosis, we had trouble getting our insurer to pay over a certain number of visits per year. Can’t remember what it was, but it was well short of 52. We did get a weekly one-on-one session with an SLP covered by the state, so be sure look into early childhood intervention in your area. As for your questions: 1) “Speaking of Apraxia” is as the title suggests a book about CAS but I’m sure at least some of it would apply to other speech disorders. 2) CASANA (www.apaxia-kids.org) is the best online resource for CAS, so I’d start any search there. 3) Anna was about 27 months old at her first evaluation. The SLP suspected CAS but wanted to see her again in six months to be sure. After seeing no improvement, she recommended therapy after the second appointment. We still had to meet with a local SLP to get approval for the state-funded therapy sessions. Anna started her therapy right around her third birthday. One thing to remember—you’re not alone. My wife and I felt the same way when we were first dealing with this, but there are thousands of kids with CAS and support groups for them and their parents all over the country. Apraxia-KIDS is a great resource for finding other families in your area too. Blessings to you and your daughter, and thanks for reading.

  12. Thank you for the info! Your child sounds a lot like my 4 year old. She understands everything and is a smart kid, but she can’t form words. We are working with our ISD for speech therapy, and I am trying to get more for her. My problem is that her dad and I are separated and he doesn’t agree with more speech therapy. He just thinks she will catch up and everything is fine and dandy. He also carries the insurance for her, and refuses to give me the info to set up more speech therapy. GRRR!!!!!

    • Look into other means of support. We were able to get Anna a scholarship for six months when we were without insurance. Check with your SLP and see what might be available. Blessings to you and your daughter.

  13. My daughter was diagnosed a year ago with apraxia. She has been in speech therapy since that time. She has made very little progress. Her therapist is not using any particular therapy associated with apraxia. We have tried finding another therapist with apraxia training, but have had little success. Our problem is further complicated by the fact that our insurance will not cover the therapy. The cost of therapy is extremely high and I do not know how we could ever pay for years of therapy. My husband thinks I should buy an app for apraxia and provide the therapy myself. I am very uneasy about trying this. Based on my research, it seems like my daughter needs a professional therapist to achieve any level of success. What are your thoughts on a parent providing the therapy? I am so upset and afraid that she will not get the help she needs. I just don’t know where to go from here. I am also upset that Cigna insurance will not cover the cost. I feel like I have no where to turn.

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