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!

 

 

Free Printable – Functional Sign Language for the Childcare Setting

Noah has been enjoying his time at the Child Watch program at the Y.   A few weeks ago, the director asked if I could come up with a few signs to share so that Noah would be understood when he signs.  I’ve come up with nine basic American Sign Language signs that are commonly used at home and in the childcare setting; Mommy, Daddy, water, thirsty, all done, more, potty, ball and hurt.

Download the free printable PDF here: Functional Sign Language for the Childcare Setting

For many children with Down syndrome, apraxia, and other speech delay, motivation can be a real problem.  There is nothing more frustrating to a child than attempting to communicate with someone who isn’t understanding them.  On the flip side, there is nothing more motivating to a child struggling with speech than to have the people around him understand and respond to his attempts to communicate.

Please share these signs with your child’s school, babysitter, daycare center, Sunday school class, grandparents, and anywhere else your child may be at risk for not being understood.

Thanks to http://www.babysignlanguage.com for allowing me to use their graphics.

When is a Bus Not Just a Bus?

You know how exciting it is when you hear your new talker say a new word from the back seat as you drive on your merry way?  That awesome moment when you ask yourself, “Did he really just say that?” and then, sure enough, he says it again.  And that new word that to anyone else is just a word becomes to you the pivoting point that the world is resting on?

Well that happened today.  Just driving down our old country road on the way to the recycling plant.  I heard “bus” in Noah’s unmistakable gruff voice.  No way.  There was a school bus heading our way, but no way could Noah have seen it before he said “bus.”  So then I glanced in the rearview mirror, and sure enough, we had already passed one bus.

I looked over at Leah and said, “Did he just say bus?”

Affirmative.

Well, I hooped and hollered and Noah growled and said and signed “Stop.”  (He hates it when I get all excited about his speech.)

More busses.  “Bus, bus,” I prompted.  More growling.  And then as the next two school busses passed, it was reported from the back seat that Noah was whispering “bus” (knowing Mama just couldn’t help but get excited if she heard it).

Next thing you know, all the kids, including Noah were playing a game of being the first person to say “bus” when another bus was spotted.

Talk (no pun intended) about being in  the right place at the right time!

Raising a courageous hero with Down syndrome rocks!

(Once kids with speech issues start playing games like this, keep the game going by looking for school busses on all your drives and shout out “bus” each time you see one – perhaps the kiddo will join right in, and you’ve just captured a few more word productions for free.)