Thursday, April 18, 2019

Childhood Apraxia of Speech


I’m writing today about information I haven’t even yet fully processed, in an effort to process it. It’s around 2:30 pm, and here’s a bunch of verbal diarrhea, some of it written through tears. At 10am today, my almost 3yo son’s SLP told me sort of off the record that she believes he has Apraxia, or more specifically, Childhood Apraxia of Speech (CAS). It’s not in his medical file, but after working with him for months, she feels comfortable using that term to describe him.

It’s not an out of left field diagnosis. Since last summer, SLPs have indicated that R has a oral motor planning disorder. Everyone who worked with him seemed to be in strong agreement with that. A few months ago, I finally asked N, his private SLP, if there are other oral motor planning disorders, she said no. “Sooo...everyone is pretty much saying without saying he has apraxia then?” “Yes”.

At that time I started to look into it a bit, joined a Facebook support group, but in the absence of an official diagnosis, it was hard to ignore that nagging part of me that said “maybe he doesn’t have it!”. So I hid the support group from my feed, stopped googling, and kept on keeping on. Both his therapy and the work we do at home is based on how he presents, and was and is consistent with therapy for CAS. Therefore, a diagnosis was more for me than for him at that point. N also told me that there has recently been a problem with inaccurately diagnosing CAS in young children, causing SLPs to be more hesitant.

While it is still not a part of his medical records, my conversation with N this morning was enough to push me over the edge from “but there’s still hope he doesn’t have it!” to “he has it, hop on board”. Which sounds a little more depressing than it is. I mean, he’s not speaking. It’s not like if he didn’t have it, things were fine. I guess, as much as I told myself I knew better, deep down some little part of me hoped he would just bust out with a sentence one day. He won’t, but that doesn’t mean we aren’t going to work our asses off in therapy so he can work his way slowly but surely to using sentences one day.

I’m told CAS is rare, making it likely that many people reading this don’t even know what I’m talking about! As a teacher married to a teacher, I didn’t know what it was until I started googling very recently. From https://www.apraxia-kids.org/ :

Childhood apraxia of speech (CAS) is a motor speech disorder that makes it difficult for children to speak. Children with the diagnosis of apraxia of speech generally have a good understanding of language and know what they want to say. However, they have difficulty learning or carrying out the complex sequenced movements that are necessary for intelligible speech.

Essentially, it’s not a physical problem. He can understand everything others say, and he knows what he wants to say, but his brain can’t get his mouth to do it.

The part that’s a really tough pill for me to swallow is that CAS is a neurological disorder. It’s not a developmental delay that he will outgrow, which I assumed it was when he initially seemed behind in his speech. Everyone assumed that, because that’s what happens with most kids who have speech issues! Including our older son! Having to shift my thinking to accept that this will be a lifelong struggle for him is hard. It’s very easy for me to begin to ruminate and go down the rabbit hole of fears.

 “Kids will make fun of him in school.”
“His teachers will ignore him because he can’t speak to answer questions in class.”
“People will treat him like he’s stupid because his speech will be different.”
“He won’t be able to make friends.”

I know the advice I would give to a friend in this position would be to just take things one day at a time and not borrow trouble and that’s what I’m trying to do. One of the most comforting sentiments came from my friend Emma. I would consider Emma a good friend, but I’ve never once spoken to her, or even met her. She’s an internet friend. One of my many internet friends, and one who lives too far to easily meet in person. And she simply reminded me that we have become good friends without ever needing to speak! Something that’s even more prevalent for the younger generation. I’m now the only parent I know who is excited for my kid to grow up in the social media era. Whether or not R is able to use speech as his primary communication tool...there’s a whole social world at his fingertips that he will not have any disadvantage in.

On that note, his case manager has reached out to Assistive Technology and he will likely be using an iPad or some sort of device to communicate in the near future.

Some common questions people have:

Does he have autism?” No, autism has been ruled out by his evaluators and service providers.

Does he have low tone/muscle problems?” Nope, same as above, ruled out by an occupational therapist.

Will you teach him sign language?” No, many children with CAS are able to speak with the help of speech therapy and that is our focus right now. Teaching a 2 year old another language that requires a lot of fine motor skills would be a bit of an either/or thing, and there is no reason to give up on speech at this time.

Does he have other delays?” He does not. He recently did standardized testing to determine if he qualifies for an IEP. In every area aside from expressive speech, he was on or above his age level. His receptive speech is exactly where it should be (aka he understands everything that is said as much as any child his age), which is easily observable if you know him. He scored slightly above his age level for cognitive, gross, and fine motor skills.

Is he making progress?” YES!

  • Over the summer, just after he turned two, he began to imitate the initial sound of words after we modeled it. For example, he would point to a banana, we would say b, he would imitate the b sound.
  • In the early fall, he began to be able to imitate two sounds, for example b followed by the short a sound for “banana”, although he could not combine them smoothly. By late fall, he was starting to be able to combine them, so one smooth ba instead of two separate sounds.
  • I was thrilled to record his first word, “yes” in his baby book this past February! I didn't record it until he had consistently and daily used it correctly for about 6 weeks, because he has "said words" before but they haven't stuck.
  • He now consistently uses “mama” and “dada” to speak to us (music to my ears!).
  • He is just now beginning to say words he knows independently, without us first modeling them. For example, he called “mama!” when we pulled up at his brother’s school, and when I asked what he needed, he said “out”. This is HUGE deal for him to answer a question verbally without prompting. Probably 95% of his speech is still prompted at this point but the fact that he’s doing anything unprompted is massive progress.

A hallmark of CAS, the one that we feel best fits R, is that imitation is extremely difficult. So while he’s been babbling mama and dada easily since infancy, he never copied when we demonstrated how to use it to refer to us. This is why we’ve had to work on building words one sound at a time. It’s also why traditional speech therapy techniques, like naming familiar objects, doesn’t work. R couldn’t imitate an entire word and didn’t try because it was so far out of his abilities. Now, he CAN imitate a lot of words, particularly cv (consonant vowel) or vc combinations, like “go”, and he will attempt even if the word is unfamiliar. We are working on adding the final sound to cvc words such as “bus” and adding on to words he is already familiar with. For example, he can easily say mama and dada now, so we push him to add on the reason he is calling us, such as “mama look” or “mama help”.

As you can see, he's working extremely hard and making phenomenal progress. I won't pretend it doesn't hurt that Remi's peers will be speaking well before he will. Every parent hurts at the thought of their child struggling in life, and it can feel unfair that something that comes so easily to almost every child is going to be hard for ours. Forever. However, there are also tons of positives to our situation (no other delays, the fact that it's 2019 and technology is amazing for communication, our insurance covering some private therapy, to name just a few). 

One thing I did that I know would never even occur to my husband was click on the section about “why” this happens, with my heart pounding, terrified of finding out that something I did during pregnancy caused this. Because that’s what we as mothers do. We always wonder if there was some way we could have made our children’s lives easier, better, MORE. I am extremely lucky to constantly have friends and family working to lift me up, telling me I’m a good mother because I take R to therapy, work with him, fight for services. And I appreciate it so, so much. I would absolutely tell someone else that and mean it so hard. But it all rings false to me. I’m never going to feel like I’ve done enough until R can tell me that himself.



6 comments:

  1. I have a work friend with 6 kids. Her third had CAS. I say had because you would never know if you talk to him now. They spent many years working with him in therapy and he was able to learn to speak (he's in high school now).
    I know this may not be a typical story, but I thought you may want to hear a story with a good ending.

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  2. OMG, you are such a phenomenal parent. Your love for your baby pours through this post, right through all your anguish and worry. Royce could not be in better hands. Never. Impossible. Who knows how this challenge will ultimately affect your whole family, perhaps making all of you stronger, wiser, more patient, more determined, and closer than you ever knew possible...

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  3. I agree with Leslie - it’s so clear from your writing that you’re an amazing mom! I’m so proud for Royce on how much progress he’s made and i think you’re right that technology will help him lead a full and happy life no matter what. sending hugs to you and Eric <3

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  4. Thank you for sharing and the courage displayed in being honest and educating more people. Know you & R's whole family will do everything possible to help with this challenge and any other challenges life brings. Sending very best wishes and hopes. Your family is a joy and wonderful miracle for our future. Thank you for being who you each are.

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  5. Thanks for sharing his wonderful information
    Can anyone teach me

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