Good morning! I’m taking my youngest to the Ear Nose and Throat Doctor today. It’s our first appointment and I admit I’m a little nervous. I’m not really sure why, I guess I just don’t know what to expect. My little guy was diagnosed with Childhood Apraxia of Speech (CAS for short) this past fall. After I requested a hearing test at our doctor’s office, we found little E had low tone hearing loss in his right ear. I’m not sure if I trust the way they test kids with their test, but at least it was another step in the right direction for us. I’m hoping for more answers. I would like to figure out anything I could do to help my little guy overcome his speech struggle. Before we met with a certified speech therapist, I’d only just heard about apraxia from a friend whose friend had a child with it. Never before had I seen it mentioned on Facebook or heard about it in any kind of awareness drive. None of the signs made sense to me. My oldest didn’t hardly talk till he was 4, but then once he did… I’m sure you’ve heard lots of those stories. I know I have. Especially sense my little guy wasn’t progressing like all the other “normal kids of the world.”
I’ve heard Einstein mentioned more times than not. I’ve heard well meaning people slam my kid by saying, “He’ll talk when he wants to” or “He just wants to say what he’s saying now. If he really wanted to say (insert word or phrase here) then he would.” Let me tell you, nothing will turn a mother into a defensive, blood thirsty, mama bear more than when you mess with her kids. It’s only the mercy and grace and fear of God that makes me not scream back in their faces. No joke. Comments like that eat me up inside. Instead I just smile, say something generic and kind like, “E has Childhood Apraxia of Speech. His brain has problems relaying messages to his mouth to say the words he wants to say. He understands everything you say and uses sign language to communicate for now.” If they press the issue more I might even mention that we see a speech therapist twice a week for an hour. What I really want to say is “Read some articles online. Realize that CAS is not a developmental delay. For kids struggling with CAS, learning to speak can be more comparable to a recovering stroke victim than to a kid who just doesn’t want to learn.” Maybe I should try to blend the two. In the meantime, you’re reading this article, so yay you! So, what exactly is CAS?
“Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech.” -asha.org
Click here to learn more about apraxia than you ever thought was ever necessary to know!
Signs and Symptoms of CAS to look for:
“Not all children with CAS are the same. All of the signs and symptoms listed below may not be present in every child. It is important to have your child evaluated by a speech-language pathologist (SLP) who has knowledge of CAS to rule out other causes of speech problems. General things to look for include the following:
A Very Young Child
Does not coo or babble as an infant
First words are late, and they may be missing sounds
Only a few different consonant and vowel sounds
Problems combining sounds; may show long pauses between sounds
Simplifies words by replacing difficult sounds with easier ones or by deleting difficult sounds (although all children do this, the child with apraxia of speech does so more often)
May have problems eating
An Older Child
Makes inconsistent sound errors that are not the result of immaturity
Can understand language much better than he or she can talk
Has difficulty imitating speech, but imitated speech is more clear than spontaneous speech
May appear to be groping when attempting to produce sounds or to coordinate the lips, tongue, and jaw for purposeful movement
Has more difficulty saying longer words or phrases clearly than shorter ones
Appears to have more difficulty when he or she is anxious
Is hard to understand, especially for an unfamiliar listener
Sounds choppy, monotonous, or stresses the wrong syllable or word
Potential Other Problems
Delayed language development
Other expressive language problems like word order confusions and word recall
Difficulties with fine motor movement/coordination
Over sensitive (hypersensitive) or under sensitive (hyposensitive) in their mouths (e.g., may not like toothbrushing or crunchy foods, may not be able to identify an object in their mouth through touch)
Children with CAS or other speech problems may have problems when learning to read, spell, and write” -www.asha.org
How is CAS treated?
I’m glad you asked. I quickly learned that the only treatment proven to work for kids struggling with CAS is intensive speech therapy. Lots and lots of it. E goes 2 times a week now for 1 hour long private sessions, but some researchers suggest 3-5 times a week. I wish there was some kind of medicine, some kind of procedure that would make all of our struggles easier and CAS just disappear, but there’s not. I’ve tried diffusing essential oils. I love the way they smell and they work wonders for his eczema, but I couldn’t really tell a different with his speech. I have seen a huge difference in his ability to concentrate and focus by introducing fish oil. I just give him a spoonful a day. We use nordic naturals. It’s lemon flavored and he takes it just fine.
We have yet to see a neurologist. I’m still waiting for our doctor to put in a referral. I don’t think a lot of doctors really understand CAS yet, so between the doctors and worrying about how insurance will help cover the costs of private therapy, I kind of feel like I’m on the front lines of the CAS battle and we just started this battle. But there have been parents fighting for a long time now. I’m encouraged as I get on Facebook and see kids who have beat apraxia. When I don’t notice the progress E makes I remember when all he said was vowel sounds just a few short months ago, despite his mama and daddy words. Some parents wait a long time to hear those words. We have been blessed to be able to hear E call us by our names. Just the last couple of weeks E has started saying ow-t. This is a big deal. He says out. We have been working on that word since day 1 in therapy.
Apraxia awareness day was May 14. This was our first awareness day to participate in. Last May I had never even heard of Apraxia. One of the slogans that seemed to be on every site I follow and visit was this: “Every child deserves a voice.” Something just didn’t sit right with me. It sure sounded good, though. I started to pray about it. I wish every child had a voice. I wish no child ever had to struggle with CAS or autism or any other kind of disability. I wish heaven was manifest on the earth now completely and there wasn’t any trial or tribulation or mountain to climb. I do pray for heaven to be made manifest in my kid’s lives, in their speech, in their hearts, in their minds, in their bodies, in our home. That’s scriptural! I was still praying about the slogan and then I realized this: just as I sing in worship that I deserve nothing but hell, but God… the same is for my children. That doesn’t mean I don’t want them to have everything I can give them. It doesn’t mean that I don’t contend for them daily. It means that instead of seeing everything I think they deserve and them not getting it right away, it means I see each word and way of communication they have now for what it really is… a gift. Each breath. Each word. Each vowel. Each consonant. When I got this bit of revelation around this bit of my life, gratefulness flooded my heart. It made it easier to work on our sounds, our words. It made it more fun to communicate with sign language. I realized that one day CAS would bow its knee at the foot of the cross and it would be found under our feet because we have the victory. And we have the victory now, too. I don’t have to wait for the great day of the Lord to have the victory, we win against CAS when we don’t let it kick us down. We win against CAS when we choose happiness instead of tears. We win against CAS when we submit to God and let his gratefulness come in and fight for us instead of fighting in our own strength with the “I deserve” attitude.
Whatever the outcome today, we will stand. And I will be beside my little guy. And sometimes I start to see how God fights for us as a father. He’s a good father. And if I fight this hard for my little guy, how much more is our God fighting for us? How much more is he feeling the pain of our struggles? What a great God we serve! And one day, I just know it, we will look back on all of our efforts, on all of our therapy sessions, on all of our charade games to figure out what little E is so excited about, and we will see more clearly. We will see how God moved. We will see our triumphs. We will see His strength made perfect in our weaknesses. We will bel closer to each other because of this mountain. Somehow, God will work all of this out for our good. And we will overcome by the blood of the Lamb and the word of our testimony. And it will all be worth it.
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