Tag Archives: Down syndrome

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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Noah’s Mermaid Sequin Pillows – Supporting Meaningful Employability and an Entrepreneurial Spirit in the Down Syndrome and Special Need Community

noah pillows heart 1

https://www.etsy.com/listing/514903650

Have I got a story for you!

Noah has come a long way from the little baby who would fall asleep in his infant carrier if left unstimulated for more than 5 minutes.  At 10, Noah has no trouble staying up with his 6 siblings still at home; he fits right in with his church friends and neighbors, and he absolutely hates anything that even resembles resting except at night.

Our family has been undergoing some changes as my Etsy embroidery business is coming into its own, and we are shifting from relying on corporate America to sustain us financially to exploring more local opportunities and flexing our own entrepreneurial muscle with several family businesses.

Andrew’s expertise is keeping him in business development with an eye towards entering the field of property management in the Austin/Dripping Springs/Wimberley area, and I (Alyson) have my machine embroidery business over at http://www.21reasons.etsy.com.

Leah (15) has been learning everything there is to know about essential oils in hopes of developing a product line of functional essential oil products.  She is also entering into the field of pyrography, which combines her artistic ability with an application in wood burning.  More to come on that!

Andres (13) has started his own lawn care business specializing in mowing and weed-eating.  He went from having to borrowing his dad’s mower to acquiring his own and then adding a leaf blower and weed-eater all within a few weeks.

Eden (12) is our resident animal expert.  She is quite the animal rescuer, nursing every little thing that comes along back to health against all odds.  She does the impossible.  Think you have to have an incubator that automatically rotates eggs to hatch chicks?  Apparently you don’t; well, at least Eden doesn’t.  Her latest feat was hatching several eggs that had been abandoned by their mother hen, and all she had was an old heat lamp and a plastic bin.  She has a thriving egg business here in Wimberley, Texas.

That brings us to Noah (10).  Noah’s been watching with great interest all the money that the kids have been earning (and spending).

Before I go much further, let me give you some background:

THE STORY:  Visiting with a dear friend one afternoon, she shared with me how much her father, who has advanced Parkinson’s disease, enjoyed this fantastic reversible sequin pillow that he could run his hand back and forth over to change the sequin colors.  A color fanatic myself, I was totally intrigued and set out to find one of these pillows for my son, Noah, aged 10 with Down syndrome.  After searching high and low I came across one in a retail establishment for $30.  I snatched it up, brought it home, and Noah LOVED it!  Well, so did his siblings, all 6 of them!  It wasn’t long before other people we knew started coming to mind as needing to have one of these pillow.  Using my contacts in the embroidery business, I came up with higher-quality zippered reversible sequin pillows that I could assemble for $20 a piece before embroidery – 33% less than what our first pillow cost us.
We passed one of our completed pillows along to a neighbor with severe autism who is usually nonverbal.  After we showed him what it did and gave him time to process the information, we were surprised to hear him say Gracias.  He spent the next two hours tracing patterns in the pillow and now keeps it by his side.  We’re delighted!!!!
As I started putting the pillowcases and pillows together that we were gifting to our friends, I realized this was work that Noah could do, with some help.  That’s how Noah’s Mermaid Pillows were born.
THE PROCESS:  The pillow covers are manufactured, and I add an embroidered name to the back if requested.  Then the components are assembled, bagged and labeled for shipping.  For the pillows Noah assembles, he takes the pillow cover, unzips it, inserts the pillow (which, believe it or not, takes some serious coordination to do all the pulling and tugging and stuffing), and zips up the cover.  For every pillow Noah stuffs (starting at 5 a week), he receives $5 – $1 for spending money, and $4 to go towards the speech therapy and therapeutic horse riding at http://www.RedArena.org that helps to keep him at his best.  Our hope is that we could give back to Red Arena and allow the scholarships they have so graciously gifted to us to be passed on to another child.  Noah will participate in some way in every single Noah’s Mermaid Pillow order.  Every packing slip will be hand-signed by him; he’ll also be helping in the packing and shipping department.  This will introduce him to processes and procedures necessary in business with an eye towards meaningful employment or a greater role in http://www.21reasons.etsy.com in the future.
On our first pillow-assembling session, Noah stuffed 6 pillows, and our work time quickly turned into a speech therapy/occupational therapy session (with awesome cooperation from Noah).  We practiced talking about everything we were doing; zip, open, push, pull, etc.  We also practiced our colors as each pillow had two colors depending on which way you swiped it.  As soon as we get our first order, Noah will practice counting money, fulfilling orders, printing and placing address labels, signing orders, etc.  And I’m thinking he’ll be adding a special sticker to each mailout as well – we are still trying to capture each occupational therapy opportunity possible.  Noah will also be going to local businesses that have waiting rooms, introducing himself, and with some help, asking for an opportunity to leave a pillow as a gift and for advertising purposes.
Are ya catching our vision?  Let me know, because I have some ideas on how you can help.  Just leave me a note in the comment sections and I’ll get back to you!
For those wishing to purchase one of Noah’s Mermaid Sequin Pillows, follow the link . . .
Blessings,
Alyson

Who Would Have Thought?

On our way out to Bible School this morning, this is what we found in the driveway:

cropped empty wagon

Note the handle of the wagon has actually been placed over the hitch.

Can you imagine what would have happened if nobody had walked behind the Suburban?

Can you say country bumpkins?

So, who would you guess is responsible for this little doozy?

I’ll give you two hints.

1.  He’s my out-of-the-box thinker.  Come to think of it, he blew up “the box” ages ago.

2.  He’s got a smile that takes me to the moon and back.

EVERY.

SINGLE.

DAY.

cropped wagon

Oh, how I love that courageous hero of mine!