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!]

 

62 comments

  1. janice kowalski says:

    my granddaughter Olivia diagnosed with apraxia god bless her little heart she is 4 years old. and a joy to be around love her so much. she is doing well with her speech. thanks for this blog. Janice Kowalski grandma J

  2. Lindy Ellis says:

    Thanks for the very informative and touching stories about the struggles that you have had to face. I have a grandson with apraxia..Every day is a challenge for him and his Mom and Dad. My heart goes out to all of you with similar situations.

  3. Claire says:

    You could have been writing about my son. While we are just starting on our journey at 2.5 yo, we already deal with many of the issues you talk about. Trick or Treating… it is almost… humiliating… to have to tell every single parent who opens the door and waits for the announcement of “Trick or Treat!” that .. “My son isn’t verbal.” Over and over and over. You hit dead home when you mention people asking how old they are or going to be, their favorite color (I don’t even know!) etc. Again and again, I voice for him and explain that he is not verbal. Or when kids at the indoor playground throw blocks at my son and push him over and declare “He is stupid and makes no sense!” when he is just trying to play with them in the best way he knows how… your heart breaks. Or when you have a play date with other kids his age and they are all putting on their shoes (he also has dyspraxia) and my son still needs help, even though he tries REAL hard and you see the sympathetic looks from other moms. No, but please… don’t feel sorry for me or him. He is the sweetest, kindest most lovable little boy I’ve ever met. Sure we have our own unique set of challenges, but don’t.feel.sorry.for.me. Thanks for the article, I shared it. :)

  4. Henrietta hatdy says:

    As a grandmother. Of a child with a diagnosis of Apraxia. I gleaned much from this article. My grandsons name is Parker . He is smart and beautiful child inside and out. How I long to hear “I love u Momo” . I also want to encourage
    My son and his wife Brooke. I would love to do something to help educate myself and others about Apraxia.
    Henriietta Hardy

  5. Lori Esposito says:

    I am still not sure if my son has apraxia. .No one has been willing to actually commit to a diagnosis. I can, however, relate to all the struggles above. It is difficult, not impossible. My son is such a terrific boy, I wouldn’t want him to be any other way!

  6. Lesley Thomas says:

    Aaron is my grandson, he is 7 years old, to cut a very long story short, the government cutbacks took away my grandsons voice, he was doing so well, his communication aid was broken for 6 months, (solitary confinement ) we now have other issues, mental health, he has now become so within himself and withdrawn, so now yet another support unit will be involved CAMS, if he wasn’t failed in the first place we wouldn’t be going down yet another rocky path. Lack of AWARENESS , it’s heartbreaking,

  7. sandra says:

    Hello, I just saw this post… it is amazing. My son also has all of the diagnosis your son has, they look to be the same age. Is your son communicating in any way? I’ve not met a Mom who has a child close to mine. Does he have any other issues if you don’t mind me asking? My son is undiagnosed, he has many issues, all brain related but his brain is structurally fine. Does your son have any vision impairments? My guy has something called CVI, it’s a brain thing not a eye thing. But he looks normal, has great physical skills, runs and jumps, etc… but he can’t really understand much of what we tell him and he can’t speak. We have started using the Ipad for choices for snacks, since that motivates him. Are you using the Ipad? I’d love to chat with you if you ever get a chance. Thanks so much :)

  8. Frankie says:

    Thank you for this post. My 4 year old has sever apraxia and I live almost every word you wrote. I am currently in search of someone who can help him because 30 months of speech therapy has not helped because they all say ‘we just don’t know how to help him”.

  9. Julie says:

    Thank you for sharing your story! I had tears in my eyes as I read it…it was like you were writing about my son, Robbie! I also shared your post in the hope people will start to understand what apraxia is & how great these kids are…they just need a voice!

  10. Farrah M. says:

    Thank you so much for such a well written article. I have an 8 year old grandson who has moderate to severe apraxia, sensory processing disorder, and severe ADHD. I could relate to every word written here. I shared this post, as I want to help in some way in making more people aware of Apraxia. I had never heard of apraxia before he was diagnosed and have had to learn so much. Thankfully my grandson, Noah, has a great support system. We cherish each new accomplishment, such as him saying “Happy Mothers Day” in his own way on Sunday. Meant more to me than anything I heard all day!!!

  11. Violet says:

    In 1989 my son was diagnosed with a delay in his speech. A lady from the public school system told us that there was no way he would be able to enroll with his class as a kindergartner. As a mom I was heartbroken. At that time there was no name for it but with intense speech therapy, reading to him consistently, doing the homework she provided for him and with the help of God he was able to attend kindergarten right along with the children of his age group. As you can imagine I was so very proud of my Son, and with the excellent work of his speech therapist. Of course the work was not over and the school he attended provided what he needed to graduate with his class. A great day indeed. My story is not over, now my Grandson had been diagnosed with apraxia. He is 4 years old and is struggling with speech delay. This does not mean he doesn’t understand things, he is very intelligent, loving and eager to learn. I do believe with time, patience, therapy and his loving parents he will overcome this. Thank you for making more people aware of our fight to help these children.

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