From May 2014

What is Apraxia and Why Should You Care?

Imagine you are a small child, playing outside, and you get stung by a bee or fall down and hurt yourself. You’re scared and crying and you run to your parents. But you can’t tell them what happened or how to help you or where it hurts. So you just sob and embrace your mom and dad until your just get used to the pain or it goes away.

Or picture your worst fear coming true and someone kidnaps your child or they get lost in a crowd, separated from you. 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.

Or 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 and grunting to others who don’t understand them. You can’t/don’t want to send them to a regular school or daycare (yet) because the teachers and students there don’t know how to “deal” with them. You can’t leave them with a babysitter because they don’t know your child at all and can’t talk to them to learn more about 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 they look at your child and say “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.

Or what about traditions like taking your child 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. Our son Maximilian was diagnosed with severe apraxia 2-weeks after his fourth birthday, along with dyspraxia and a sensory processing disorder.

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I’ve been spending a lot of time lately trying to find the right words to make a concise, relevant, informative, and helpful post about apraxia (I’ll do another post later on dyspraxia as it relates to motor planning issues with the rest of the body, not just the mouth and speech). But it’s taken me longer than expected, quite frankly because it’s a pretty complex disorder to understand, even for someone who has a child with apraxia. So here is my best attempt at an easy-to-understand explanation. Most of my information came from the MayoClinic website.

Childhood Apraxia of Speech (CAS) is:

  • a rare speech disorder
  • when a child has trouble making accurate mouth movements to speak
  • neurological
  • 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

A person’s brain has to learn how to make plans that tell your speech muscles how to move your lips/jaw/tongue in ways that results in accurate sounds and words. But the brain of a child with CAS has difficulty planning these movements, thus resulting in little to no speech, or incorrect/inconsistent sounding speech.

While some symptoms might appear earlier than others, CAS typically cannot be formally diagnosed until 3 or 4 years of age. Here are some symptoms. Some of these appear in children with CAS, some do not.

  • difficulty breastfeeding
  • little to no babbling or cooing as an infant
  • delayed onset of words
  • limited number of spoken words
  • frequently leaving out sounds
  • 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

Alright, I’ll stop there with all of the technical stuff! It’s a very complicated, in-depth disease that is impossible to sum up in one post. But, in short, for a child with apraxia, their brain struggles to send the proper signals to their mouth to produce intelligible speech.

Here is what Childhood Apraxia of Speech ISN’T:

  • It is NOT a developmental delay that a child will simply “grow out of.”
  • It does not mean my child is dumb.
  • It does not mean you can talk down to my child like they don’t understand you.
  • It does not mean you can bully my child because he talks differently than you.
  • It does not mean you have to deny insurance coverage for speech therapy just because you don’t properly understand the severity of the disorder or why intense therapy is necessary.
  • It does not mean you can ignore it and pretend this lifelong disorder and battle doesn’t exist.
  • It does not mean my child’s hopes and dreams and ambitions are any less important than your neurotypical child’s.

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Now, I know there is an awareness day for pretty much EVERYTHING out there and every single person and family is fighting a hard battle with something that they need support for… I for one had never even heard of apraxia until last year. So why should you care about CAS and participate in Apraxia Awareness Day?

  • Because CAS is rare, and therefore incredibly understudied, partially due to a lack of funding because it is so unheard of
  • Because 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
  • The cause of apraxia is mostly unknown (sometimes it’s genetic or due to trauma in the womb or during birth), and you usually can’t see any evidence of it on an MRI
  • By better understanding apraxia, you can teach other kids about some other, new, beautiful differences that may exist between them and help stop bullying
  • Children with apraxia sometimes never speak, or never speak intelligibly
  • Because the families of children affected by CAS need a wide range of support, especially emotional
  • 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 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
  • Without appropriate intervention, 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
  • 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
  • It is important to provide adequate speech therapy and other services so that the impact of the disorder can be minimized
  • One or more children you know may be affected by CAS, so it’s important to understand the signs and early symptoms
  • Because our son was diagnosed 6-months ago with apraxia and he could use everyone in his corner that he can get
  • And, because every child deserves a voice.

By donating and spreading awareness, you are helping to provide (from apraxia-kids.org):

  • 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

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So, please, please, please, take some time this Wednesday, May 14th, the 2nd Annual 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.

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#wearblueformax #apraxiaawarenessday2014

 

*None of this 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.

[12.10.14 UPDATE: 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!]