Musings of a Marfan Mom

Diagnosis: Childhood Apraxia of Speech

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J has been getting speech therapy off and on since last May, and been followed by the county’s early intervention speech therapist for just as long. In that time we’ve seen great improvement with his receptive language (what he understands), but little improvement with his expressive language (what he says). I chalked this up to Marfan syndrome, thinking that it was just low oral tone, maybe tied in with his dysphagia.

Now though, it appears that it’s not the case after all.

We first heard the term apraxia when I started J with a private speech therapist (SLP) last May. He was just shy of 18 months old and not doing much babbling. He had receptive and expressive delays…similar to what M was showing at that age, but not as severe and clearly not autistic. At the first or second visit the SLP asked if I’d heard of verbal apraxia (I had, from research I did before M was diagnosed) and said that although she wouldn’t diagnose it before age 3, J was showing some signs. I dismissed her, primarily because he was so young, and ended up stopping therapy a few weeks later because her therapy tactics made no sense at all. I was looking for a set-up similar to what we had in California and she was not that.

It took us months to find another private therapist – this time through a hospital’s clinic – but in the meanwhile we continued with the type of drills that we’d learned from M’s therapists. We also worked hard with sign language, but J had a really difficult time with it. It wasn’t an issue with him using the “right” signs, but an ability to retain knowledge of the signs he’d learned and to use them appropriately.

In November or December the early intervention SLP brought up apraxia to us. Much like how M’s developmental pediatrician first addressed autism with us, she explained that she felt pretty confident that J had apraxia but either way the treatment would be the same. I felt that plan made sense, but I wasn’t convinced J had apraxia, mostly, in retrospect, because I didn’t really understand much about it. I mentioned this possible diagnosis to his private SLP though and she kind of ignored me, so I put it out of my mind as much as possible.

A few weeks ago the early intervention SLP came out for another evaluation, and we had a good conversation about what apraxia is. She ran a couple of tests and felt much more confident in her diagnosis, as did I. The next week, I pushed J’s private SLP for her thoughts. She reluctantly agreed that he very much looks like he has childhood apraxia of speech (CAS).

So what exactly is CAS? I think there is some debate, but it appears to be a neurological condition that makes it difficult for the brain to form the signals needed to tell the mouth how to move to make words come out. This means that J was born this way and knows what he wants to say, but he can’t get his mouth to reliably work to say it. I am unsure if this could be tied in with his dysphagia or not. Kids with CAS may be able to say a word one day and not the next. It is also easier for them to say vowels than it is for them to say consonants.

Here are some of the reasons J has been given this tentative diagnosis (tentative because technically it’s not given until the age of 3, even though his private SLP said you can often tell kids have it much earlier):

– He can not stick his tongue out or lick. For example, when I give him peanut butter on a spoon, he takes it off with his teeth. Being able to copy someone sticking out their tongue happens at about 2 months old.
– He rarely babbles, and was very late in doing so….it started being more frequent around 18 months.
– Although J has 6 verbal words (mom, hi/bye, go, uh-oh, yah, and no), he has trouble using them correctly or consistently and, with the exception of go, usually leaves off the first consonant, so they become om, ayu, ah, and oh). Often, J has to be prompted to use his words.
– He has problems eating/chewing, which can be part of apraxia.
– He has trouble combining sounds. For example, we’re trying to teach him “more.” This comes out “mmmmm. ooooooh.” instead of “muh” or “moh.” Make sense?
– His primary method of communication is pointing and going “enh” at varying pitches.

So what comes next? I’ve spoken with both our private SLP and the early intervention SLP about starting J on an augmentative communication device. We know that he will talk eventually, but it may take years before he has intelligible speech. In the meanwhile, J is getting very frustrated with his inability to communicate. Pointing can only take you so far, after all! We’re going to try PECS (a system of communication using pictures) at his private session on Wednesday and then further discuss options with our early start team on Thursday. Mark and I are leaning towards getting a mini ipad for J with a text to speech app for him; there is a community grant I can apply for to hopefully pay for it. This way he can tell us what he needs while we work on speech. We also need to decide which method of therapy we want him to have, which will maybe (probably) necessitate a change of private therapists (again).

I think we’re handling the news pretty well. I’m sad that J has another diagnosis (one that is not related to Marfan, by the way), but I feel like we’re well-equipped to handle it. It’s just a little stressful trying to decide which therapy and communication device to use for him. We’d definitely appreciate any insight those of you who have been down the CAS road have to share!

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5 Comments

  1. I’m sorry J received this diagnosis too. Speech difficulties have an impact on all areas of a person’s life. When I worked with mentally challenged individuals (before the wonders of small electronic devices) we used ASL & PECS a lot. PECS can be a great system, so easy to personalize. Sending you all much positive energy. xox

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  2. Uggg. So I am an SLP and CAS is no fun. Have you discussed Prompt therapy? At his age you may want to consider pecs before jumping to an iPad. I just worry about kids in general attached to technology 24/7.

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    marfmom Reply:

    We are going to talk about PECS. I just worry about him being able to carry that book around and use it so well with his fine motor issues. PROMPTS is also something we’re looking into; I heard it was just one method though and that we should also consider others? Meaning, the foundation made it sound like there are other therapies that are as good as PROMPTS, kind of like how ABA is controversial for autism.

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  3. Maya, I have been through this a lot with the children I do speech therapy with. I would definitely try PECS first before moving to an Ipad. Sometimes kids will get too attached to the Ipad and using it to communicate. Pictures to me are a better way to start with and I have had great success with PECS. If you have any questions please let me know! Hope it all works out :)

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    marfmom Reply:

    So how do little kids use PECS? I’ve seen the binders and they just look so bulky for a young kid? Maybe I don’t fully understand how PECS works. Getting too attached to the iPad is a concern that I have. I want him to be able to have a way to get his wants/feelings across now but I don’t want him to give up on trying to talk.

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