[A majority of this is pulled from my original article two years ago, for our first Apraxia Awareness Day. But I wanted to freshen it up with new thoughts, resources, and photos since we’ve been on this journey for 2.5 years now!]
Imagine you are a child, sleeping in your bed safe and sound, and you suddenly wake up screaming and crying — perhaps from a nightmare, or maybe something else that frightened you like a strange shadow on the wall. Your parents run to you to comfort you, but you have absolutely no way of telling them why you are upset or how they can help. So you just sob and embrace your mom and/or dad until you just get used to the sadness or it goes away.
Or picture yourself, as a parent or caregiver, and your worst fear comes true — your child disappears from your home and is lost outside, or they leave your sight for even the briefest moment when you are out somewhere together. They’re gone. You panic. A LOT. Because you know they can’t say their own name or tell someone where they live or who their parents are.
Just for a moment, put yourself in the shoes of a parent who has been spending the first few years of their child’s life undergoing what feels like one big “game” of charades. Only it’s you trying to understand what your child needs or wants or when they’re hungry or tired. But they can’t tell you, so you have to become the expert in anticipating their reactions to certain situations… an expert in their nonverbal communication… an expert in “translating” their pointing or muddled words to others who don’t understand them.
Or imagine being a new parent and watching your child’s milestones fall farther and farther behind their peers. Late crawling, sitting, walking. No babbling or cooing. Other parents at the park look at you and say, “Oh, he’s not walking yet??” Or, “So how many words does he have now?” Or the clerk at the grocery store looks at your child and says, “How old are you?” or “What’s your name?” and all your kiddo can do is stare back at them. Not out of rudeness, but just lack of ability to speak, even though they want to. Sooo desperately want to. You try not to panic, constantly wondering what’s “wrong.” Can you imagine the frustration these children must feel on a daily basis? Try to put yourself in their shoes.
What about traditions like taking your kiddo to see Santa to tell him what he wants for Christmas? Or saying “trick-or-treat” on Halloween? Much more complicated, and sometimes not even an option, for kids with apraxia.
This is what it’s like to live with Childhood Apraxia of Speech (CAS). Our son Maximilian was diagnosed with severe apraxia 2-weeks after his fourth birthday, along with dyspraxia and a sensory processing disorder, for which he receives occupational therapy in addition to speech therapy 3x per week.
Even though I have been sharing information and stories about our journey for the last 2+ years, I still often find that many people do not completely understand what apraxia is. So here is my best attempt at an easy-to-understand explanation. Most of this information came from the MayoClinic website.
Childhood Apraxia of Speech (CAS) is:
– a rare speech disorder, but is not delayed speech or a developmental delay
– when a child has trouble making accurate mouth movements to speak
– a neurological condition that typically has no underlying cause that can be found with tests, scans, or other procedures
– an issue of health and normal physiological function
– a medical condition consistent with the definition of disease and illness
– easy to misdiagnose, as it shares some characteristics with other speech disorders and even autism; however, a child with apraxia may or may not also have autism, and a child with autism may or may not also have apraxia
Essentially, a person’s brain has to learn how to tell their speech muscles to move their lips/jaw/tongue in ways that results in accurate sounds and words. You’ll find this challenge frequently in stroke victims undergoing therapy services. But a child with apraxia is often simply born with it, and often does not have any underlying cause like trauma (which is why insurance companies tend to not cover services). The brain of a child with CAS has difficulty planning speech movements, thus resulting in little to no speech, or incorrect/inconsistent sounding speech.
Some children with CAS never speak, and some are never able to speak intelligibly. However, many do find great success with years of frequent, intensive speech therapy.
While some symptoms might appear earlier than others, CAS typically is not usually diagnosed until 3 or 4 years of age. Here are a few symptoms. Some of these appear in children with CAS, some do not, which again can make it difficult to properly diagnose:
– little to no babbling or cooing as an infant
– difficulty breastfeeding
– delayed onset of words
– limited number of spoken words
– frequently leaving out sounds when speaking
– learning to say a new word and then “losing” it later
– vowel and consonant distortions
– separation of syllables in or between words
– voicing errors (i.e., “pie” might sound like “bye”)
– sometimes language problems such as difficulty comprehending speech, reduced vocabulary, or difficulty with word order
In short, for a child with apraxia, their brain struggles to send the proper signals to the muscles of their mouth to produce intelligible speech.
Here is what Childhood Apraxia of Speech is NOT:
– It is not a developmental delay that a child will simply “grow out of.”
– It does not mean the child is less intelligent than a neurotypical child.
– It does not give anyone the right to bully or demean a child because of their struggles to communicate verbally.
– It is not a disorder that should be ignored just because you do not understand it.
– It is not a condition in which medical services should be repeatedly denied by insurance companies because it is uncommon and does not fit into very narrow policy language.
– It does not mean this child’s hopes and dreams and ambitions are any less important than that of neurotypical child’s.
– It does not mean they should be left out of activities and celebrations and opportunities that any other child would enjoy as a part of their childhood.
I, for one, had never even heard of apraxia until 2013 when Max was diagnosed. But these kids have grit. These families have grit because of everything they endure and learn from their amazing children. These challenges are our everyday. Our 24/7/365. It’s choosing paying for speech therapy out-of-pocket instead of taking family vacations. Or buying alternative communication (AAC) devices over regular toys. It means not ever being able to leave the challenges behind at the end of the day.
Max is now 6.5 years old, and is starting to speak in sentences and phrases, which is so exciting! We are beyond grateful for his therapists and their love for him. Max is amazing. He teaches us new things daily. He has a passion for learning about the earth, the ocean, outer space, and more. He enjoys trips to the local planetarium and Museum of Life and Science. He has so much love for his younger brother (and baby sister on the way!). He is endearing. He wins the hearts of everyone he meets. He constantly makes us laugh. And he’ll school even avid gamers in a number of Nintendo games.
So why should you care about CAS and participate in spreading the word about Apraxia Awareness Day?
– One or more children you know may be affected by CAS, so it’s important to understand the signs and early symptoms
– Because CAS is rare, it is understudied and needs more recognition by the general public
– More awareness will help doctors suspect CAS sooner, thus leading to earlier intervention, rather than telling parents and caregivers to wait it out as a possible developmental delay
– It’s important to know that these children will simply not grow out of this diagnosis. The cause of apraxia is mostly unknown (sometimes it’s genetic or due to trauma in the womb or during birth, etc.), and you usually can’t see any evidence of it on an MRI
– By better understanding apraxia, you can teach other kids about some new, beautiful differences that may exist between them and help stop bullying
– Children with apraxia sometimes never speak, or never speak intelligibly, and you need to know how to support them and communicate with them (through their AAC device, sign language, etc.)
– Because the families of children affected by CAS need a wide range of support, especially emotional and often financial (e.g., even keeping an ear out for grants they can apply for is helpful)
– If CAS is not properly evaluated and diagnosed by a Speech Language Pathologist who specializes in apraxia, adequate and appropriate therapy may not be provided and little or no progress may be made
– More awareness might also encourage more Speech Language Pathologists to study more about, or specialize in, apraxia
– So more grants may be created and offered to families in need of financial assistance for speech therapy
– While the act of learning to speak comes fairly effortlessly to most children, those with apraxia endure an incredibly lengthy struggle that needs a better understanding from others
– Without appropriate intervention and therapy services, children with CAS are at risk for secondary impacts in literacy and other school-related skills
– Because apraxia is so unrecognized and misunderstood, most insurance companies do not cover speech therapy services (as per our own policy wording, if Max had autism or if he lost these abilities due to a trauma/accident, then he would be covered — but because it is considered “habilitative” for him rather than rehabilitative, we receive zero assistance from our insurance company)
– A lot of families (us included) turn to private speech therapy for help, despite the costs, because many schools do not understand the importance of intensive, frequent, one-on-one speech therapy for apraxic kids; and some schools do not want children to receive private therapy services because “it will take away too much from their time spent in school,” yet they still will resist providing adequate in-school services (*Our amazing therapy clinic is Emerge – A Child’s Place in Durham, NC)
– It is important to provide adequate speech therapy and other services so that the impact of the disorder can be minimized
– Because our son was diagnosed 2.5 years ago with apraxia, and he could use everyone on his team that he can get
– And, because every child deserves a voice.
– Critical information so that families of newly diagnosed children know how to help their children and feel less alone in the process
– Education so that professionals have the best tools available and children receive the best possible treatment
– Day-to-day support for parents of apraxic children and the professionals helping them
– Research to uncover the best and quickest ways to help children with apraxia develop speech
So, please, please, please, take some time this Saturday, May 14th, 2016 for Apraxia Awareness Day, to learn a little bit about Childhood Apraxia of Speech, and do a little something to help educate others and show support for children with CAS, like our son Max.
The resilience of these children working incredibly hard to learn how to do something that comes naturally to so many others is amazing. But you have to give them the opportunity to do so. Try not to kick yourself if you waited until ‘x’ age to have them evaluated or to start therapy. The important thing is that you reached a point where you felt it was time to take action and get help. Trust me, I know the feelings of guilt that these parents battle with. It’s only because we all care and want the absolute best for our children! Max has several more years of therapy ahead of him, but given how far he has come in just 2.5 years, I can only imagine the progress he’s going to make over the next several years!
I want to quickly talk about a few resources that help apraxic kiddos and their families, too! Some books that Max has loved in the past to use with his speech therapist are wordless books! Yup, you read that right. They are awesome because they actually encourage kiddos to make up their own stores, use sentence structure, etc! One of Max’s favorites is Chalk. Another is Fossil (he really loves dinosaurs!). There are actually a ton of these types of books on Amazon that we have yet to explore, but are looking forward to it! Kaufman Cards are also popular amongst the apraxia community, but we have not used them at home yet.
You can also support CASANA by choosing their organization through smile.Amazon.com anytime you shop!
I’m also grateful for books like Anything But Silent that help provide a unique view on apraxia. It is especially helpful for therapists and family members to read, as it gives a great understanding of what it’s like to live with apraxia.
Other helpful items for apraxia families: Child ID Bracelet (since our children may have a hard time saying their name or where they live), hemp seed oil or fish oil to help promote healthy brain development, Sesame Street and Signing Time have been a huge help and encouragement for Max, and the iPad Mini has also been wonderful as an Augmentative and Alternative Communication (AAC) device (and there are a ton of great apps that help promote speech and language development).
*None of the information in this post is meant to be used as medical advice, as I am not a medical professional. Everything I have written is merely based on our own personal experiences.*
**I have created an email address to use for collecting therapy donations for Max at: avoiceformax(at)gmail.com via PayPal, because so many people have expressed interest in helping our sweet kiddo!**