SLP Mommy of Apraxia

Category: specific language impairment

Apraxia as a symptom to a bigger picture

When I started out on this journey, having my daughter receive the diagnosis of Childhood Apraxia of Speech was devastating. Unlike other parents who might have needed it explained or who turned to google and realized it is a lifelong neurological disorder, being an SLP I already knew that. My mind flashed to two boys I treated prior to Ashlynn when I was a school SLP, who both entered Kindergarten nonverbal and I was terrified.

After I threw myself a pity party, I picked myself up determined to attack the beast named apraxia. At the time as we were going through it, I did not fully grasp as I do now, the fact that most kids with apraxia will not only hold that one label. I did not fully realize that most kids with apraxia, a neurological speech disorder, will also have co-morbid neurological disorders as well.

As a professional SLP specializing in the field, I have a current private practice caseload of around 35 kids. There is not one who doesn’t have another co-morbid condition. Friends, I have to repeat that because it is important. There is not ONE who only has apraxia.

I feel now like this is an important topic to discuss because I don’t know about other parents, but for me I would have wanted to know up front that a diagnosis of CAS meant I was going to be dealing with more than CAS for the long haul.

Why? What does it matter? You take each diagnosis day by day right?

I struggle with this. Part of me agrees but then part of me just wishes I had known the statistics were as high as they were for the chances that my daughter would have dyslexia, or ADHD, or SPD. I say this because honestly, had I just known up front all of that was a possibility, I could have:
1. Been more vigilant and more proactive about potential comorbidities
2. Not been so devastated each time a new one popped up.

In the post on ADHD I wrote:

I know it’s a little too young to diagnose ADD, but I hope to God she doesn’t have that too. She doesn’t deserve this..any of this.

In the post on Dyslexia I wrote:

In that moment, my dear readers, I had the same gut feeling I had when that SLP told me back when Ashlynn was 2:11 “Laura this is apraxia.” In that moment, that article told me, “Laura, this is dyslexia.” I started to cry at the end of that article. Damnit. I missed it again. I missed another OBVIOUS dx in my OWN daughter. Why does this keep happening?? What good was all my training and experience when I’m not applying it to my OWN baby??

Ashlynn has a slew of other diagnoses as well, and EACH time I went through this process AGAIN. I had to relive the pain of a diagnosis AGAIN. I guess I can’t say if the pain would have been any less had I known all of these diagnoses were more of probabilities that possibilities, but I honestly think it wouldn’t have made each new diagnosis as gut wrenching.

I was talking to Lynn Carahaly the other day, creator of the Speech EZ program for apraxia and apraxia expert out of Arizona, and she said the following,

Over my career specializing in the disorder, I definitely feel apraxia is rarely the primary issue, rather a sequela to a bigger picture. The problem is SLP’s and parents are so focused on the speech and not looking at the big picture in early development. There is this thinking that if we could just overcome the apraxia, everything will be OK.

I let out a big sigh after reading that. Anyone else who felt that way, will you raise your hand with me? I fell into that category. I was so convinced if we could just fight and beat this beast called apraxia, everything else was going to be okay, and man I was wrong. Consequently, each new diagnosis brought this sense of total indignation. We fought apraxia and WON!! Why now did she have to deal with something else?

I take a different approach now with my clients. I am completely honest and transparent about the potential for co-morbid issues. In fact, I told one mother the other day,

Your daughter is at risk for dyslexia. I recommend that for now we operate under the assumption she might have it and get her started early with pre-literacy and phonemic awareness activities; and if she doesn’t have dyslexia, we celebrate.

I’m just giving parents, and now all of you, what I personally would have wanted to hear. Lynn is right, and that’s why her program incorporates so many pre-literacy elements. Let’s start looking at apraxia as more than just a speech disorder, and let’s celebrate if the child did indeed only have apraxia. Once I started connecting with parents of kids who have global apraxia, only then did I realize every child with global apraxia had a co-morbid diagnosis of ADHD. The same was true when I found the apraxia-kids facebook group and realized just how many kids with apraxia also had Sensory Processing Disorder! Oh, and when I found out that and started talking to my global apraxia friends, just how many kids with global apraxia had a similar and rare presentation of sensory processing disorder in that they had a high tolerance for pain and an “under-responsive” tactile system!

Parents and professionals, the moral of the story is this. In most cases, apraxia is just a foreshadowing of additional neurological conditions to come. There are many, MANY, combinations it would be impossible to predict at that initial CAS dx. Dr. Ruth Stoeckel did a talk at one apraxia conference titled “Co-Occurring Diagnoses: Other Letters that may go with CAS.” There are MANY other conditions that can and DO go with CAS. I think it benefits parents and professionals to know we are dealing with just the beginning of what is probably a very bigger picture.

Resources:

Duchow, H., Lindsay, A., Roth, K., Schell, S., Allen, D., & Boliek, C. A. (2019). The co-occurrence of possible developmental coordination disorder and suspected childhood apraxia of speech. Canadian Journal of Speech-Language Pathology and Audiology.

Iuzzini-Seigel, J. (2019). Motor Performance in Children With Childhood Apraxia of Speech and Speech Sound Disorders. Journal of Speech, Language, and Hearing Research, 62(9), 3220-3233.

Langer, N., Benjamin, C., Becker, B. L., & Gaab, N. (2019). Comorbidity of reading disabilities and ADHD: structural and functional brain characteristics. Human brain mapping, 40(9), 2677-2698.

Lewis, B. A., Freebairn, L. A., Hansen, A. J., Iyengar, S. K., & Taylor, H. G. (2004). School-age follow-up of children with childhood apraxia of speech. Language, Speech, and Hearing Services in Schools.

Miller, G. J., Lewis, B., Benchek, P., Freebairn, L., Tag, J., Budge, K., … & Stein, C. (2019). Reading Outcomes for Individuals With Histories of Suspected Childhood Apraxia of Speech. American journal of speech-language pathology, 1-16.

Teverovsky, E. G., Bickel, J. O., & Feldman, H. M. (2009). Functional characteristics of children diagnosed with childhood apraxia of speech. Disability and Rehabilitation, 31(2), 94-102.

Laura Smith, M.A. CCC-SLP is a 2014 graduate of Apraxia Kids Boot Camp, has completed the PROMPT Level 1 training, and the Kaufman Speech to Language Protocol (K-SLP). She is the author of Overcoming Apraxia and has lectured throughout the United States on CAS and related issues. Currently, Laura is a practicing SLP specializing in apraxia at her clinic A Mile High Speech Therapy in Aurora, Colorado.

June 16, 2018
Diagnosis, Disability, and Finding your Tribe

Parenting children is hard. That isn’t a secret. Parenting a child with a disability has even extra challenges that shake us to our core.

I have a daughter with special needs and numerous learning challenges. When she was almost three, she received her first diagnosis of Childhood Apraxia of Speech, a rare and severe speech disorder in children. That was the beginning of many a “dark day” in my parenting journey with her. I remember putting her in her car seat, tears in my eyes as her bright blue eyes smiled back at me and seemed to ask, “why are you crying?” I sobbed that day. I cried for so many reasons. Fear, uncertainty, guilt and confusion. I texted a friend I was devastated, and I truly felt like I had the wind knocked out of me.

Slowly I found a community of parents who had children with apraxia as well; and I started to feel hope again. I started to believe what was possible for their children was possible for mine as well. I found my tribe, as I like to say. All these parents understood me, my daughter, our challenges and the significance of our small successes! I discovered there was a walk to honor kids like mine and spread awareness. I connected with others in my community and no longer felt alone. I no longer felt devastated but instead felt blessed by the friendships I had formed.

My daughter has went on to receive multiple and additional disabilities since that first one of apraxia. I can’t lie. Each new diagnosis, report, or low test score feels like a punch in the gut all over again. However, we have our people now. We have our tribe. We have others who understand. They understand that sometimes you are in such a state of deep grief you can do nothing else but cry and cannot face the world that day. We also know that stage doesn’t last, and when a member of our tribe is down, we will rally around them and be ready to pick they back up when they are ready to face the day again.

I learned that some of my darkest nights were followed by the most glorious sunrise; and I found that sunshine in the community around us. No one should suffer alone. No matter the struggle, we should all find others who understand our unique situation in the world. For us, community was the light that found its way into the dark tunnel of grief and showed us the way out.

May 22, 2018
I Know an Old Lady Who Swallowed a Clover: Speech/Language Book Companion and Activity Pack
Back again for St. Patrick’s day, my popular “There Was an Old Lady” book companion template to work on a variety of skills!
- the repetitive vocabulary pictures from the book and sequencing grid to aid in story retell
- Two different following directions activities: one following simple one step directions, and the other following directions using positional/spatial concepts
- a four page mini book to practice the carrier phrases: she has, she saw, she wants, & she ate + book vocabulary pictures
- an enlarged picture of the old lady to glue on a manila envelope or cereal box and “feed her” the vocabulary pictures.
To get this book companion, visit my TpT store
January 21, 2018
SLP Mommy Top 10 posts of 2017

I started this blog in 2012, shortly after my daughter’s diagnosis of apraxia when she was just under three. Since that time, she has made tremendous growth. She speaks, she speaks clearly, and she can tell me about her day. She can tell me when people are mean to her, what her teacher said that was funny, and what she had for lunch. These were all things she couldn’t do and I worried she would never be able to do when she was first diagnosed.

We’ve added more diagnoses through the years including a language disorder, dyspraxia, ADHD, dysarthria, and this year….dyslexia.

In spite of all of these challenges, watching my now 8 year old daughter wake up each morning and attack the day with happiness, kindness, bravery, and a resilience that is unmatched inspired me to do the same. I always think, I have NONE of her issues….what’s my excuse?

This blog/website has grown with an average of 300 visitors daily. Whether you are a professional, parent, or just someone who cares, thank you so much for following along and being part of my desire to spread apraxia awareness in the hopes of helping every child with apraxia to achieve intelligible speech.

Here is the Top Ten Countdown to my most read posts of 2017. Cheers to 2018!

10. As children walk to find their voice, local news outlets stay silent.

“I have to say I want to give up sometimes. It seems like no one is going to care and sometimes the fight just doesn’t seem worth it anymore. But then I look at these smiling faces who never give up, and like the song says, I need to get up again to see what’s next.”

9. It feels like home this year: Apraxia Conference 2017

“Have you ever stopped to think, and then believe, that one person, ONE, could change the life of hundreds; if not thousands, if not millions of others?”

8. Whatever it takes: A day on the brink.

“She’s finally in bed. I have the song “Whatever it takes” on again. Tomorrow is a new day.”

7. It’s like juggling 8 balls and desperately hoping one doesn’t roll away.

“Sometimes I wonder what it would be like to just worry about the speech, or just worry about the motor skills, or just worry about homework or just worry about executive functioning, or just worry about language processing.”

6. It’s rare so no one cares? Prevalence of CAS.

“Would it surprise you then if I told you the prevalence rates for Down Syndrome are 1-2 children in every 1000 births. Sound familiar? Maybe that’s just because I just wrote that figure for CAS.”

5. “She’s a puzzle” or…she has dyspraxia.

“I don’t want professionals to tell me she’s a puzzle. I don’t want to know that she’s so unusual that her very being challenged your knowledge, or that you are confused by her.”

4. No, not another diagnosis. Adding dyslexia to apraxia.

“In that moment, my dear readers, I had the same gut feeling I had when that SLP told me back when Ashlynn was 2:11 “Laura this is apraxia.”

3. The Hulk and Rousey on struggling to speak.

“Everyone is handicapped either physically, mentally, or emotionally. It’s all about maximizing what you have. As a kid I had trouble speaking. It’s all about overcoming adversity.”

2. Apraxia, special ed, and grad school. One woman’s remarkable tale.

“Whatever you accomplish in life will be perfect, as long as you keep loving yourself for who you are.”

1. The Problem with School SLP’s

“They cannot “refer out” or “discharge for lack of progress” as an can be done in private speech. No, the school SLP is expected to figure it out regardless of the lack of resources, lack of funding, or lack of time.”

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December 31, 2017
Apraxia? Phonological Disorder? Language Disorder? What’s the difference?
So many times I see parents post a video of their child speaking, or attempting to speak, and they ask, “Is this apraxia?”

The follow up question is usually something like, “If it’s not apraxia, then what ELSE could it be?

The answer is that childhood speech and language delays can be caused by a variety of factors. It’s important to keep in mind too, the difference between “speech” and “language” disorders when we are discussing speech and language delays.

On the surface, speech and language seem like different sides of the same coin. This is particularly true when people or even professionals may seem to use the terms interchangeably. If a child isn’t speaking, they must have a “speech” problem right?

Not necessarily.

A child with a “speech disorder” has a problem in the way or how they say sounds. Most of you who read this blog know my daughter has apraxia, and apraxia, in its truest sense, is a “speech” disorder. It’s not a language disorder (although my dear daughter and many other kids have both). Other common factors that can cause speech disorders, or the way kids say their sounds are:

1.) A hearing loss, or even a history of chronic ear infections – If a child has a hearing loss, or is suffering from a hearing loss due to chronic ear infections; their typical speech development *may* be negatively impacted. Without going into a technical explanation, it makes sense that a child with ear infections who is hearing like they’re “under water” during the time they are supposed to be learning how to talk, may have speech and/or language development that is delayed.

2.) Stuttering – a disruption to the flow of speech, is also considered a “speech” disorder because it is characterized by disruptions in the production of “speech sounds.”

3.) Phonological Disorder – Phonological disorder is one of the most common speech disorders that SLP’s treat, so I was shocked to go to the ASHA website and find this definition:

Speech sound disorders that impact the way speech sounds (phonemes) function within a language are traditionally referred to as phonological disorders; they result from impairments in the phonological representation of speech sounds and speech segments—the system that generates and uses phonemes and phoneme rules and patterns within the context of spoken language.

It is NOT that complicated. To put it simply, phonological disorder is a speech sound disorder in which the child typically makes consistent patterns of errors. For example, one common phonological process is called fronting. In this process, the child will consistently produce the /k/ sound as a /t/ sound, and the /g/ sound as a /d/ sound. It is a predictable, patterned error. This child, regardless of the word will usually always make these substitutions. However, a child with a phonological disorder can have several phonological processes they are employing and be quite severe and have significantly reduced intelligibility. A child with phonological disorder may have numerous substitutions, omissions, or distortions.

4.) A motor speech disorder such as apraxia or dysathria – Apraxia of speech refers to a child’s difficulty with the planning and programming of speech production that results in inconsistent errors, deficits with prosody, and significantly reduced intelligibility. Unlike kids with phonological disorder, children with apraxia do not always have predictable and consistent error patterns. This could be on repeated productions of the same word, or the ability to produce one sound in different words.

For example, a child with apraxia may be able to say an /m/ in the word “momma,” but be unable to say or inconsistently say an /m/ in the word “more.” Another child with apraxia may say “baby” for baby once, but when asked to say it multiple times may produce it different ways such as saying: baby, bay-ee, daby, or day-ee. A child with apraxia may have numerous substitutions, omissions, or distortions.

In addition, children with apraxia have some sort of prosodic disturbance to their speech. This can manifest in ways such as: stressing each syllable in a word resulting in more “staccato” sounding speech, or errors with pitch, intonation, rate or volume.

Graphic depicting the differences and overlap between phonological disorder and apraxia.

Language delays do not involve the actual production of speech sounds (although the two can overlap). Language delays can be caused by many factors as well, and include:

1.) A late talker – A late talker is just a typical child who talks late and has no additional speech or language issues from it. The ASHA website offers this explanation “At onset, it is difficult to distinguish late talkers from late bloomers, as this distinction can be made only after the fact,” which as a parent and professional of children with apraxia, this is a pretty DANGEROUS and potentially hazardous distinction if you are just waiting around to see if it’s late blooming or something else.

2.) A language impairment – There are many components of language. Language is comprised of five major components including: phonology, morphology, semantics, syntax, and pragmatics. In addition, children can have difficulties expressively or receptively with these components. Some children can have both, getting a diagnosis of MERLD or mixed expressive/receptive language disorder.

3.) A hearing loss – This is repeated on this list, because a hearing loss can also cause delays in language development as well. ASHA describes its effects in the following:
There are four major ways in which hearing loss affects children:
1. It causes delay in the development of receptive and expressive communication skills (speech and language).
2. The language deficit causes learning problems that result in reduced academic achievement.
3. Communication difficulties often lead to social isolation and poor self-concept.
4. It may have an impact on vocational choices.
3.) A medical or genetic condition – Other causes of language delay or impairment could be but aren’t limited to:

Autism
Fragile X
Down Syndrome
Cerebral Palsy
Cleft lip/palate

To complicate things even more, a child with a medical disorder could also have a co-morbid speech or language impairment as well! It’s important to always know the etiology because an accurate diagnosis ensures and informs therapy.

What I hoped to clarify in this post is that the question “Does this look like apraxia?” is just a little (okay a lot) more complicated than it seems. Obviously the best place to start is to get a comprehensive evaluation! If apraxia is suspected, it is best to get a differential diagnosis from an SLP who has received additional training past their post graduate degree in apraxia of speech.

To find an apraxia expert near you, or to get listed as an apraxia expert, go to apraxia-kids.org and click “find a speech therapist” at the top.
December 26, 2017
Whatever it takes: A day on the brink

Ashlynn had oral surgery today to fix a ridiculously thick upper labial frenulum that was impacting her front teeth. I have anxiety. That’s no secret. I was pretty nervous. I had like every prayer warrior I could think of praying for her.

It’s not that serious of a surgery in the grand scheme of things; but she was going to have to take a valium the night before, and then one and hour before and one right before surgery.

I gave her the valium pill (meaning I watched wringing my hands while my husband gave her the pill) and waited. The surgeon said the pharmacist may fuss at the prescription, especially since she is tiny, but not to worry. Um……telling a worrier not to worry is like telling the sun not to come up. Actually it might be worse. It made me freak out more than had he said nothing and just prescribed the pill.

I immediately decided she would sleep with me, because if I woke up I needed to hear her breathing. That was basically a joke because the valium made her hyper and crazy emotional. She would laugh hysterically and then just start balling uncontrollably. Every emotion was magnified and out of her control. She talked incessantly and didn’t get to bed until 10!! Despite this, I kept her home from school because I figured she would feel pretty tired.

Wrong

She woke up on the right side of the bed happy and ready. In hindsight, I should have just sent her to school and then taken her out when it was time for the procedure. She was also (and she told me multiple times) very MAD I was not letting her go to school. It’s amazing right? She has no close friends, struggles in every subject, and was just bullied recently…..but she’s mad I didn’t send her. Her internal resolve and determination is incredible.

Anyway, I digress. I let her graze on food all day since she would only be able to eat soft foods after the surgery. I gave her the second valium an hour before and it made her hyper again. She was talking incessantly, and at the doctor’s office she was literally jumping and running in the lobby. If you know my child, she is pretty much the opposite of a sensory seeker, so seeing her do this on a drug that’s supposed to make you sleepy was crazy town.

The doctor made the decision in light of her behavior not to give her the third valium. The procedure went amazing. The surgeon and his team were amazing and awesome with kids. Ashlynn though was awesome too. High tolerance for pain means she didn’t even flinch when the needle went in for the anesthetic. He asked her to close her eyes, but I explained she wasn’t going to be able to do that on demand because of her motor planning issues, but seeing a needle wasn’t going to freak her out. She gave blood for her genetic testing last summer staring at the needle and joking with the flabotomist that she was “taking a lot of blood wasn’t she?” The flabotomist remarked in her whole career Ashlynn was the only person who smiled giving blood. LOL

So that’s the good part. Everything else was pretty much a shit show. I’m sorry to cuss, but sometimes it’s the only words that cut it. The doctor’s orders were clear. Relax, take it easy, eat soft foods, do medicated mouthwash rinses (which turned into salt water rinses since Ashlynn can’t spit), alternate ibuprofen and tylenol, and keep lips closed and ice the outside. Sounds basic. I got in my car and turned on Imagine Dragons “Whatever it Takes.” I told Ashlynn it was our song. We do whatever it takes to help her. We never give up. We do what it takes. I was feeling pretty good.

However, Ashlynn apparently thought it was opposite day. She immediately and incessantly kept talking. I kept telling her to keep her lips closed and then she would burst into tears that I was being mean to her and not letting her talk. I calmed her down with the promise of a present. That was short lived because she kept biting the ice pack (hello SPD). If I corrected her to not bite it, she became hysterical. Hysterical = bad because she could rip out the sutures.

“Fine just give me the ice pack and talk. Throwing a tantrum will rip out the sutures.”

We picked up her brother, and he was trying to be helpful and told her (nicely) to stop talking so she doesn’t bleed. That was code for “Let’s go to War” in Ashlynn’s world and they started fighting on the way home. My stress was at a 10.

Once home, she decides she’s famished. Not hungry…FAMISHED. She can only eat soft foods. I feed her two bowls of noodles, 5 yes FIVE pieces of bread, countless squares of cheese, a banana, and then an ensure calorie drink I had my husband pick up on the way home. After dishes I go downstairs and find her eating gummies she got out of the storage room!!

“What the hell are you doing??” You can’t eat gummies!!!”

Not my finest moment I know. She burst into tears I was yelling at her. Told me again how mean I was being. Again, she is supposed to be resting. Most kids who took valium would be asleep. Nope. Not my kid. I go downstairs again to find her bouncing on our big yoga ball.

“Ashlynn….you’re supposed to be taking it EASY!! Get up upstairs and watch a movie!!”

Ashlynn hates movies. She is 8 years old and due to a visual processing motor problem and language processing issues, she cannot follow the story line of an entire movie and therefore has never watched one completely through. She bursts into tears again, throws a tantrum and guess what? Her suture finally decided it had enough stress and started bleeding.

I got a washrag and applied pressure just like the doctor said to do. She seemed to realize it was somewhat serious now. My son was majorly freaking out trying to help me out. Ashlynn was still mad I had been mean to her.

Bedtime came and I had to try and do a salt water rinse. She still can’t spit. She has one motor plan. Swallow. She can’t chew gum either for this reason. First sip. She swallows. Second sip. She swallows. Third sip, she somewhat spits all over my mirror but I praise her. Fourth sip, she swallows. Fifth sip, spits all over my mirrors. I have NO idea if any reached her suture, but we tried.

She’s finally in bed. I have the song “Whatever it takes” on again. Tomorrow is a new day. Dang parenting his hard, but I can’t give up.

Whatever it takes.

Playing on snapchat trying to get her to be quiet and keep her lips closed!

December 15, 2017