Tag Archives: Speech Therapy

Down Syndrome and Apraxia – New Changes in Diagnosis

Last year Noah’s (10-Down syndrome and apraxia) speech therapist sent me an email with a link to a study that had documented apraxia in the Down syndrome population.  You can see that study here:

https://www.sciencedaily.com/releases/2016/02/160205100848.htm

That email was huge for me for two reasons:  Number one, it confirmed what I have known for YEARS, that apraxia is a very real issue for many kids with Down syndrome, Noah being one of them; and, two, it confirmed for me that Noah’s speech therapist is mindful of Noah’s specific issues and is more concerned about helping Noah than he is about being in the right or being politically correct.  (Yes, in the world of speech therapy, there is a political correctness based on going with the flow of state and national organizations).

Libby Kumin, the unparalleled expert on speech issues in people with Down syndrome, has taught for years that apraxia and Down syndrome can and often do co-exist.  In one of her articles, she states a belief that about 15% of kids with Down syndrome also have apraxia.    My belief is that in the population of children with Down syndrome who are not showing significant progress with traditional speech therapy, that number goes up to 50 or 60 percent.  That’s a lot of folks who historically have been told, “We don’t treat people with Down syndrome for apraxia because a dual diagnosis of those two things does not exist.”  At the very most, people historically have been told, “We’ll treat the symptoms as they come, but apraxia protocol is not appropriate for people with Down syndrome.”

For a thorough discussion on apraxia and Kumin’s research and experience with people with Down syndrome and associated apraxia, please read:  https://www.down-syndrome.org/reports/301/reports-301.pdf

At this point, some of you may know exactly what I’m talking about; for the other 98%, please let me explain.

Oral motor skills is a term relating to the strength and movement of oral facial muscles, especially the movements related to speech.

Oral motor planning skills (planning is the key word here) refers enable the speaker to combine and sequence sounds into words, phrases and sentences. Difficulty with oral motor planning skills is referred to as childhood verbal apraxia.

Let’s face it – for the majority of our loved ones with Down syndrome, intelligible speech is a huge issue.  Most children with Down syndrome are heavily invested in speech therapy as young children but leave it behind as they enter the middle elementary grades.  Unfortunately, few kids with Down syndrome leave speech therapy because they don’t need it anymore; most of them leave because they either appear to plateau or the cost seems to outweigh the benefit.  I am not alone in assuming that at some point, Noah’s speech is going to get as good as it can be, and he will still have a very difficult time being understood.

My obsession with apraxia is two-fold:

  1.  I want to be sure that Noah’s speech issues have as specific of a diagnosis as possible because I know, especially with apraxia, an accurate diagnosis results in accurate targeted treatment.
  2. I want to know that if and when Noah does plateau in speech, his stopping point will be as high as is possible for him.  I do not want a single misunderstood word to be due to a treatment we didn’t get for him or a piece of his Down syndrome puzzle that we did not address.

(I use the term “plateau loosely:  I strongly believe that people with Down syndrome who continue to be challenged and supported in their speech (and other) efforts will grow in their abilities and retain their progress much better than those written off as having reached a point of no further progress.)

In the following weeks, I will be exploring verbal apraxia, aka childhood apraxia of speech, or dyspraxia one bite at a time.  Would love to hear y’all (sorry, we’re smack in the heart of Texas in the beautiful Hill Country) chime in with questions or your experiences with Down syndrome and speech therapy!

 

 

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Apraxia – Is there a Time to Drill and a Time to Not Drill?

Noah has been back riding the horses at Red Arena for a couple months now.  I’ve been blown away by his instructor,  Miss Emily.  She adores my little guy and although she is not a SLP, she has worked with him extensively on his speech and is getting great results.

A few weeks ago she told me about all these words he was saying and how he was putting phrases together on his own.

Seriously?

She said he had said words like throw, rock, water, snake.

Again, seriously?

I prompted him to say “water” right there in front of her, and Noah grunted as usual.

“No, no,” she said, “He really said it.”

“Okay, whatever you say,” I thought.  (I didn’t say it outloud, did I?)

So last week at Noah’s session, Miss Emily produced a video.  Proof.  The little boy on the video is not the little boy I know.  He was throwing rocks in the water and asking for more rocks, water, putting words together.  It was like she said.  He said “water,” he really did.

So I mentioned all this to Noah’s speech therapist and asked for his take on why Noah does so well in that environment, but I don’t get the same results.

“Well, Mrs. Dunn, you are Noah’s mother, Noah’s homeschool teacher, and his speech therapist.  It’s probably too much.  Take the speech therapy drilling out of his routine, and just work with him on his school work.  Work on prompting speech from his lexicon during real-life opportunities, but leave the speech therapy to me.”

Seriously?

Okay.  So I horribly misquoted the speech therapist, I’m sure, but that’s the gist  I got.

Seriously?

Stop drilling?  The kid has got apraxia, he’s barely verbal, and he’s 7 years old.  You can’t stop drilling a kid with apraxia.  Everybody knows that.

So I fumed for a few days.  Noah is darn tooting lucky to have a Mom who is willing to drill with him every day.  Stop drilling?

But you know, as I thought about it, I think the speech therapist may have a point.  Maybe.  Or maybe I’m just tired and welcome a break.

But going on the notion that the speech therapist might have a point – Noah actually excels at drilling.  He can make most of the consonant and vowel sounds in isolation.  It’s words and phrases that he struggles with.  I think I tend to wear him out in our speech sessions, so then when I try to prompt speech in real-life activities, he responds to it like its another speech session and resists.  Perhaps it might be better for my wanna-be speech therapist persona to fade into the background and just stick with Momma.

You know, I think what really got me was the notion that somebody other than myself might hold the key to helping Noah find his voice.  I mean, we don’t farm out our kids education, academic or religious, we don’t pay other people to take care of our kids; we feel like we’re wholly responsible to give our children what they need.

So this idea of “leaving speech therapy to the experts” just doesn’t fit.

But I think he might be right.

But I also think, in looking back, that Noah needs different things at different times.  I think he needed traditional speech therapy when he got it at age 3-6.  And I think he needed PROMPT once he turned 6.  And I think he needed the drilling we did over the past year.  But I think, perhaps, the speech therapist was right.  Right now, he just needs his Mom.

So Mom is what he gets, even if Mom is going to still be capturing every teachable language moment she can, even if Mom is still going to be prompting for speech and teaching sign language, even if Mom is still going to be on the lookout for predictable books and opportunities for speech.

What do you think?  Am I caving, or does this make sense?  Where do you think the balance should be between what a speech therapist does in weekly sessions and what a mom should be doing at home?

Apraxia or Not Apraxia – the VMPAC, Down Syndrome and Apraxia

Our courageous hero underwent the VMPAC (Verbal Motor Production Assessment for Children), which was a formal assessment for apraxia.  He did the entire test in one sitting, and he came out of it smiling.  Amazing stuff!  So, the test got scored, and if Noah didn’t carry the diagnosis of Down syndrome, he would definitely have the diagnosis of apraxia.

But since apraxia is technically (depends who you talk to) a condition only present in the absence of other neurological conditions, Noah doesn’t carry the diagnosis of apraxia.   In fact, because the has Down syndrome, he never really should have been given the test to begin with.  The reason it was administered was because I’ve been pestering his speech therapist to formally assess him for apraxia for a year now.  So, I think it’s safe to say Noah has all the verbal features of apraxia, but he probably will never be diagnosed with it.

The bright side?  Well, the speech therapist Noah has been working with is an expert in PROMPT therapy, and that is the method he has used for the past year.  I searched him out when I became convinced that Noah had apraxia, and I think his use of PROMPT is the exact thing that Noah needs.  So diagnosis or not, his treatment is consistent with that of apraxia.

I don’t know why this issue of diagnosis versus no diagnosis is so important to me.  I guess in a way it’s the first time Noah has been excluded from anything based on his Down syndrome.  Not all kids with Down syndrome have apraxia.  Kids with apraxia do not tend to progress without very specific apraxia therapy.  There are thousands of kids out there who have Down syndrome and are not progressing in speech therapy, and it is being blamed on their Down syndrome.  In talking with countless parents of these children who have not progressed with conventional speech therapy, I am convinced that the majority have apraxia-type symptoms.  They are not being considered or treated for apraxia.  I was fortunate that Noah’s first speech therapist was willing to use Kaufmann cards with Noah, which are part of the Kaufmann Apraxia Protocol.  She too was uncomfortable diagnosing Noah with apraxia, but she was willing to use apraxia materials with him.

This is my opportunity to plead with you speech therapists out there and parents too.

If you have children with Down syndrome who are not progressing with traditional speech therapy, DO NOT WRITE IT OFF TO DOWN SYNDROME.  These super-kids with Down syndrome who are speaking so clearly – I’m betting they do not have apraxia symptoms.  Apraxia is TREATABLE!!!!  If you suspect your child has apraxia, ask for a formal assessment, if for nothing else to get an objective black-and-white record of all his features consistent with apraxia.  And then it may be best to avoid the apraxia/Down syndrome argument, but insist on apraxia-based treatment to address the motor planning and sequencing issues that treat apraxia symptoms.

Speech and language pathologists – I know it’s political, and I know it’s a hot topic, but please, please, please, look at the evidence.  We need to look at apraxia differently, and we need to get objective diagnoses of apraxia even in the context of dual diagnoses.  Children with Down syndrome with apraxia or apraxia-type symptoms NEED apraxia protocols.  We lose such precious time when you dismiss the possibility of apraxia and insist on traditional speech therapy methods.  Look at these kids with an open mind, and if you are seeing apraxia, PLEASE speak up!  Our kids with Down syndrome need SLPs who will advocate to diagnose and treat them no matter what their co-existing diagnoses are.  May I humbly suggest that it is time to redefine the term “apraxia” in order to secure the treatment these kiddos so desperately need?