Living with Childhood Apraxia of Speech

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Every child deserves a voice...but not every child finds theirs

Imagine not being able to tell your Mama that you want a drink or that you hurt yourself. Imagine you can't ask for a toy or a cracker. Imagine all you can get out are cries and screams. Typical life of a baby, right?

But, what if you aren't a baby? What if you are 2 or 3 or even older? Imagine the frustration of not being able to communicate with those around you. You understand them and you have things you want to tell them, but your mouth can't form the words.

Imagine a world without a voice.

Sometimes a Mom just knows...

no matter the doctors say

My first clue should have been that he couldn't latch to nurse. But, I was a new mom - what did I know. The professional lactation consultant said things were fine - that my son would eventually figure it out. She gave us a nipple shield and said we'd only need it for a few days. 10 months later, my son still couldn't latch to nurse and needed a fast flowing nipple when using a bottle. Still, no one thought anything of it.

My second clue came when my son suddenly lost the two words he was saying at 13 months. His first word was dog (ok, that's probably my fault), the second was ball. He was saying both by 11 months, and by 13 months all he could get out was a "yay" sound. Fast forward to a year later at 24 months and "yay" was all he could still say. Everyone, including the pediatrician said "Wait and see" "He's a boy, " or "He walked early, he'll talk late." My gut said different.

I bugged the pediatrician for months until he finally told me about the state's Early Intervention program - undoubtedly just to shut a crazy Mom up. (I found out afterward that a parent can refer their child to for evaluation - the referral does not need to come from a doctor - would have been nice to know!) Fortunately, once a child is referred to the program, assessments have to be completed within 45 days. I used those 45 days to do research into every possible problem my son could have - and believe me I came up with some doozies! I was sure it wasn't Autism or a developmental delay, but that really left me wondering - what was wrong with him?

Right before the assessments, the program sent a booklet that talked about various speech disorders. The early warning signs of one of them fit my son to a T - Childhood Apraxia of Speech. I just knew in my heart that this was what we were dealing with. The speech pathologist agreed. We now had an answer - and although it wasn't the worst possible diagnosis by far, it was pretty devastating.

My Son - 2.5 years old

Meow

My son was about 2.5 years old in this video (possibly closer to 3). He's saying "meow." He does a great impression of a cat, but you can see the concentration on his face as he tries to get the sound out. This was typical of his speech at this point. He really only had 2-3 recognizable words he could say at this age - meow, moo, and yeah. He was nearly 3.5 yrs old before I heard him say "mama" and 4 before I heard that magical sentence - "I love you mama" (well, it came out as "me lub mama" - but I'll take it!).
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Childhood Apraxia of Speech is a motor-planning disorder that is characterized by difficulty sequencing the speech movements necessary for volitional speech

Motor-planning, volitional speech...

What the heck are you talking about?

That's the technical definition of Childhood Apraxia of Speech (shortened to CAS). In layman's terms it means that the brain sends out the signals to speak, but the mouth muscles don't get the message. "Normal" speakers don't even think about what their mouth needs to do to create particular sounds and form words. However, if you have CAS, you understand what was said to you, you usually know what you want to say back, but for some reason the signals sent to your mouth, tongue, and voice muscles get scrambled and you struggle to find the decoder ring.

Although the disorder is called "Childhood" Apraxia of Speech, this isn't a disorder that a child grows out of when they hit a magical age. The disorder will always be there, but it may "resolve" and become less noticeable as they grow older. An adult with resolved CAS might not struggle to speak at all; they may have just a slight lisp; or, they may continue to struggle to form words and sentences their entire life. Many children with CAS have articulation and phonological disorders as well, which make expressive speech just that much harder - both for them to get out and for others to understand them.

I couldn't find any scientific statistics, but from my reading it seems that the majority of kids who are diagnosed with CAS have that as their secondary diagnosis. CAS is very common in kids with autism, Down's Syndrome, Cerebral Palsy, developmental delays, and other neurological disorders. However, for some kids, such as my son, CAS is their primary diagnosis (often with Sensory Processing Disorder).

My son is not on the spectrum; he is not developmentally delayed; in fact, he developed so ahead of track physically that everyone from my family to his pediatrician told me that the speech delay was probably due to his brain working overtime on the physical. Mentally he was ahead of track as well - all around an early developer - except for the speech.

This is true for many children with CAS. But there are some other neurological disorders that seem to commonly exist along with a primary diagnosis of CAS - Sensory Processing Disorder, hypotonia, and a variety of learning disorders. For my son, there are definite sensory issues and mild hypotonia. He's only 4, so hard to tell if he has learning disorders, but since I'm aware of the high risk he was, I feel we are already ahead of the game.

Do you know someone with CAS?

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Early Warning Signs

The following is a list of common early warning signs for Childhood Apraxia of Speech. When I first read this list it was like it was written about my son. I could check off each and every warning sign for him. Unfortunately, I didn't see this list of signs until my son was 27th months old - right before the speech pathologist tentatively diagnosed him.

It's my wish that these early warning signs will become as well known to parents as the early warning signs for Autism. CAS isn't as rare as you think - 1 in 1,000 children will be diagnosed this year. And yet, unless your child has an obvious speech delay or impairment, or has been diagnosed with a disorder such as Autism, you are unlikely to have heard about CAS.
  • little or no babbling during infancy
  • difficulty with nursing or feeding during infancy
  • few consonants
  • slow, effortful or halting speech
  • poor speech intelligibility
  • difficulty imitating sounds or words
  • late onset of first words (or "losing" words)
  • inconsistent or unpredictable speech errors
  • groping during speech attempts
  • high frequency of vowel and voicing errors
  • high receptive language, but low or no expressive language (child understand everything being said, but can't say anything back)
  • "soft" neurological signs, such as sensory problems, sensitivity to touch, fine motor problems
  • slow or no progress with traditional speech therapy (apraxic kids benefit from specialized, intensive therapy that isn't necessarily know by all speech-language pathologists)

An Apraxic Parent's Best Friend

Newly diagnosed?

After the shock of my son's CAS diagnosis wore off, I realized that it was my job to step up and educate myself and our family about his disorder. I found two books to be of tremendous help in learning about my son's disorders and how to cope with them.
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Have you heard "autistic-like"?

One thing I often heard when we were first searching for a diagnosis was "Your son exhibits many autistic behaviors, but is not on the spectrum" and then I'd be left thinking "And that helps me how?" It's tremendously frustrating to know something is wrong with your child, but not have him neatly into any diagnosis that would open up doors for treatment. My son was clearly not autistic, and yet exhibiting many of the same behaviors. If it hadn't been for a very obvious speech disorder (well, obvious once we got to a speech therapist anyway!), my son wouldn't have received any sort of treatment, and more than likely, would have been written off as a problem child.

No one in my family had heard of Sensory Processing Disorder until we started reading about CAS. SPD is commonly found in kids with CAS, so we began to wonder if that couldn't be part of the problem. My son had been evaluated by an occupational therapist at the same time he was evaluated for speech, but the OT did not recommend therapy (although her report did state that his behaviors were sensory based and potentially developmentally disruptive). Since the professional had stated that he did not need therapy, I thought this wasn't an issue.

It wasn't until my Mom came across "Autistic-Like, Graham's Story" that we began to realize that sensory issues were causing a lot more problems than we realized. True, some of the behaviors stemmed from frustration at not being able to communicate, but there were also true sensory problems that needed to be addressed. I began to push for a new evaluation, and fortunately my son was paired with an amazing OT who has worked miracles with him (and me!)

I think parents hear "autistic-like" more often than we realize, and it scares us. Given a non-verbal child with sensory problems, more than likely you'll see a child that exhibits autistic-like behaviors. Unfortunately, many of these children will either not receive therapy (because they are clearly not autistic) or they will receive the wrong treatment. I highly recommend that you watch "Graham's Story" if anyone has every mentioned "autistic like behaviors" to you. It's not always Autism!

Autistic-Like: Graham's Story

Amazon Price: $19.98 (as of 02/22/2012)Buy Now

Our Lifesaver

Signing Time

I toyed with teaching my son baby signs, but never really kept with it. I really wish I had. If I had, would have skipped nearly a year of mounting frustrations. We would have been able to communicate.

I can't begin to explain how excited my son and I were when he signed something to me and I responded appropriately. If I remember right, he signed that he was hungry and wanted a cracker. The level of frustration on both our parts immediately dropped. We both understood that even if my son never spoke a word, I could hear him loud and clear through sign language.

His speech pathologist was the one who first recommended the Signing Times videos. I was shocked at how quickly my son picked up the signs. Within a week he was signing Mama, water, drink, hungry, cracker, apple...within a few weeks he was signing an amazing amount of words.

There is a school of thought that teaching your baby (or late talker or speech impaired child) will delay speech even further. Not true!! What is really does is teach your child language and communication skills that will translate into speech skills when they are ready to start talking. If you have a child with a speech impairment and your child's speech therapist or teachers are saying that sign language will just further delay speech, I bed you not to listen to them.

Think about this - what's worse: your child screaming, hitting, acting out in frustration that no one understand him/her, or the very slight possibility that communicating through sign language will delay speech by maybe a month or two? It's a no brainers!

Rachel, the creator of the Signing Times videos, has a deaf child (Lucy). She first created these videos as a fun and easy way to teach kids ASL so that hearing and deaf children could communicate. The videos have now expanded to including specialty videos for teaching babies sign language, a series of videos for helping teach daily living and communication skills to Down Syndrome children, and a series designed specially for childcare and preschool organizations.

The videos are fun for kids (and not boring for adults!). It's pretty easy to pick up the signs (don't get freaked out by Rachel's blue and orange band-aids - they are there to help you figure out which fingers she's using to make the signs!). The videos follow a natural progression from signs for basic needs (hungry, drink, mom, dad, etc) to more complicated concepts (such as school, pencil, read, etc). There are also flash cards and books available.

If you have a young child who is struggling to communicate, I highly recommend you get at least the first two or three of these videos and really work to get a basic line of communication going with your child. You'll be amazed at the difference it will make in your relationship.

I also highly recommend these videos for anyone with a baby. If I had known about these videos, or at the very least had worked harder on teaching my son baby signs, I don't think we would have ever experienced the level of frustration and early behavior problems that we did. He'd still have CAS, but we would have had a leg up on communication!

Every Child Deserves a Voice

and mine finally found his!

Childhood Apraxia of SpeechIt's been nearly 2 years since my son first started intensive speech therapy. He's gone from an angry, frustrated toddler to a happy, talkative preschooler. That's right - talkative! He found his voice and he isn't letting it go. And I couldn't be happier for him.

2 years ago I wondered what sort of life my son would have. Would he ever say Mama? What sort of career would he have if he couldn't speak? How would he make friends at school? Where would he go to school (ASL isn't exactly the language of schools around here)? How would he yell at his children? (yes, I thought that far ahead). I'll admit...I felt sorry for my son and myself...for about 10 minutes. Fortunately common sense says that if a deaf person can have a normal life, then a speechless person can! It's a disability, but, at least in our case, it's not a big deal.

To me, my son is perfectly normal. I don't even notice his speech problems until I'm around other 4 year olds (and then it shocks me, I'll admit). I'm actually thankful for his sensory disorder because learning about it made me realize that I also have sensory problems.

Does my son realize that he's different? Of course he does...he has ears...he can tell he doesn't talk the same way other kids do. He knows that the majority of people don't understand him. When talking to someone, he'll often whisper "Say that for me" to me because he knows his words are either not going to come out right or he can't find the right words.

2 years ago my son was placed in the 3rd percentile for expressive speech. That means that out of 100 kids, only 3 would be less understandable than him. Last month he was placed in the 30th percentile. His intelligibility is growing in leaps and bounds. You may not understand him all the time, but what does that matter?

He has found his voice!

I'd love to hear your comments!

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Session 12: Week 1 - "About Me"

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AkitaJitsu

I'm a single mom of a 4 year old boy and a 5 year old Akita. My son has Childhood Apraxia of Speech, a neurological disorder that affects his speech,... more »

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