Tag Archives: PROMPT

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!

 

 

Another Day, Another School Year

Well, the Dunn Family Homeschool officially starts the new school year tomorrow.  The kids are spending most of Monday at our church’s weekly Bible class, but will I let that stop me from having our first day of school?  Never, I say with an evil cackle.

I start this school year like I have so many others – high hopes, high expectations, a ton of curriculum (although not as much as in years past – my shelves are full of very good but unused curriculum).

I’ll be teaching four age groups this year – Seth 4 and Noah 7 (DS) will be doing preschool, Bella 6 will be doing first grade and some preschool with us, Andres and Eden will do 5th grade, and Leah will be doing 7th grade.

Uh-huh.  Or maybe more accurately I should say Uh-oh.

I’m going to go back to basing my preschool curriculum around the alphabet, one letter at a time.  Let’s see if I can get past C this year.

Math will be Math-U-See, Language Arts-Abeka, 7th grade science – Abeka, History – Alpha Omega LifePacs, Bible – Character Sketches by Institute in Basic Youth Conflicts (ATI) (and yes, I know about Bill Gothard’s fall from grace) :(, and we’ll be capturing teachable moments along the way to fill in all the gaps.

I realize how less than fully present I’ve in homeschooling the kiddos the last year or so, and I want so much more this year.  I want to get caught up in the excitement of home education again, I want to find and capture the ah-hah moments my children and I have along the way, I want to treasure each and every teachable moment, each and every time of togetherness.  Lord, let it be so!

Disclaimer:  When I first started reading blogs, be it mothering a large family, homeschooling or parenting a child with Down syndrome, I hated it when the authors lamented over their doubts, shortcomings and weaknesses.  If I wanted to read about those, I could just start a journal.  Yet here I am, full of doubts, shortcomings and weaknesses; and here I sit sharing them all with you.  It seems less than honest to do anything else.

The children are all on grade level it seems, except Noah.  I find myself elated and dejected at the same time by all he has accomplished this year.  He has started using spoken two-word phrases; he can, ever so crazily, write his name, he is able to do speech flashcards along with me and by the third repetition he can say the word on his own most of the time.

Those are all big differences between last year and this, and that’s the elating part.  The dejected part is that we have been working on many of these things for 3-4 years.  I think of ALL the time, effort, frustration and creativity that has gone into it, and I am flustered and overwhelmed by how slowly we have progressed.  And then there is the ever maddening question of would he have done better if he had been in the public school system.

A few of the things Noah has been up to during my blog hiatus?  He’s learned lots of potty words that we wish he hadn’t.  He has taken to calling certain people stinky and yucky.  It’s hard not to laugh when I leave him with a therapist or other adult and when I come back, they bubbily tell me, “He kept saying something, but I couldn’t tell what it was.”  And then I have to break it to them that he was calling them one of the two.  Maybe I should just shrug my shoulders next time and tell them I have no idea what he was saying.

Noah has gotten to be resistant during drilling, and I often have to bribe him with the promise of iPad time or a goodie.

Noah spent a week at a horse day camp at Red Arena with three of his siblings.  Much fun was had by all!

Most of Noah’s noises are still unintelligible – I don’t think he is even trying to pronounce a word most of the time.  He uses simple signs and sometimes even speech spontaneously – still mostly one-word phrases.  Noah responds very well to PROMPT speech therapy, and we are seeing some carry over at home.  He says words much more easily if I say them along with him.  Having him place his pointer finger on my lips while I say a word also helps him a lot in his pronunciation.

This road is much longer and steeper than I had imagined it would be, but the scenery is beautiful and the company is the best.  Noah fills our life with love and affection and it is a blessing to know and love him.

And that’s all for today.

Blessings to all for a great school year.  Stay tuned for our adventures through homeschooling and Down syndrome?

Alyson

 

 

 

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?