Tag Archives: diagnosis

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:


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!



Motor-Speech Disorder Not Otherwise Specified

Not quite apraxia, definitely not dysarthria, it looks like Noah has landed with Motor-Speech Disorder Not Otherwise Specified.  Pure apraxia exists in children without other neurological compromise, and one of the features of apraxia is inconsistent errors.  Obviously, since Noah has Down syndrome he is not without other neurological compromise, and most of Noah’s speech errors are consistent, so we can’t quite land on apraxia.  Motor-Speech Disorder is the umbrella under which apraxia and dysarthria fall under; the NOS is a relatively new addition to the group.

The biggest part of the apraxia dilemma is that there is no official criteria, so a child presenting to one SLP may be diagnosed according to her criteria and not be diagnosed at a different SLP based on her criteria.  This is the kind of stuff that drives a momma whacko.

The good news is that since apraxia is a motor-speech disorder, and since PROMPT is all about addressing oral/motor/speech issues, the fact that Noah is landing in motor-speech disorder NOS versus apraxia means the treatment is the same regardless.  So, I continue to think we’re in the right place as far as treatment goes.

There’s not much literature out there on MSD NOS now; although Marcus (Noah’s SLP) says there is research currently being conducted.  So in time we’ll have more information – I’m fairly confident the research will tell us PROMPT (tactile cueing) is the right road to be on.

As far as Noah’s progress, Marcus says he is doing well.  He is able to produce more accurate sounds and I think his jaw sliding is improving.  Marcus is starting to add concepts like positional words into their sessions, so Noah is getting language as well as speech practice.  I’m so anxious to see carryover from Marcus’ sessions and my work with Noah into his natural language routine.  That is coming so very, very slowly.  In theory, it will happen in time and practice as we continue on with speech therapy.

One bright spot to our week – Noah has started saying “Caelie” and “Leah.”  He has done it a few times on his own without any prompting.  This is a huge distinction in my eyes – being able to mimic a word is great, but it’s not really communication.  Having Noah run towards me shouting “Caelie, Caelie” since he knows we’re going to be meeting her for lunch is definately communication.

I’m so thankful for the little things along the way that show me he is moving foward.