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Recognize this?

Since the day my youngest son was born, I have known I wanted to give him every opportunity to have the greatest possible clarity of speech he was capable of achieving.  This may seem unusual, given the fact that he is my youngest son, meaning I must have another son or sons — so why wasn’t I concerned about their speech?  Well, my youngest son has Down syndrome.

I had seen people with Down syndrome, and could recognize the physical features of it when I met  my youngest son the day he was born.  There are features typical to people with ds, but not all people with ds have every trait (I learned those visible characteristics were referred to as “markers” when my son was born).

Based on my life up until that point, I was aware of a few key factors.

  1. People who speak different are treated different.  That treatment may be better or worse depending on the speech patterns.
  2. People who look different are treated different.  Again, treatment is going to be better or worse, and that can be subjective to your definition of better or worse.  Sometimes “special” treatment seems better to one person and worse to the person receiving the “special” treatment.
  3. My child was going to get the best life I could give him, just like his siblings.  And that would mean some extra effort on my part for him that my other kiddos simply didn’t need.

If you’ve read this far and keep on going, I have to share a disclaimer:  I am not getting any paid reimbursement for the information contained in this post (note there are no actual links).  I’m simply passing along what I’ve learned.  If you read this and get something out of it, GREAT!  I wish you success!  I have culled much from the parents of kiddos with ds who have gone before me, and that is something I’ve truly appreciated.

I had not, at that time, heard any individuals with ds speak who had clear enunciation skills.  It took time and patience to understand them.  I’m cool with that.  What I didn’t know was if this was just the way it is for people with ds, or if there was anything I could do to give Boo (nickname) his best chance at clear speech, of reaching his greatest potential in this specific area of development.

The services we had available to us through the state’s education early intervention programs gave me access to Speech, Occupational, and Physical Therapists at birth,  plus other therapies/treatments as needed.  I was told that Occupational Therapists could do what the Speech Therapists do, at such a young age.  I wasn’t buying that.  There is some crossover, but the training is not the same.  Otherwise, both fields and jobs wouldn’t exist.  I wasn’t told I couldn’t have it, just not encouraged to get it — yet.

Guess what?  Speech was the first and only therapy I used — in the beginning.  So, if you’re a mom with a newborn with Down syndrome and you’re reading this right now, my advice would be to get Speech therapy for your infant.  If you want, get OT and PT from the get-go, too!

The deal is, however, with ds, there are delays.  Delays in walking, delays in potty training, delays in speaking, etc..  And, the delays are later for speech (overall) for boys than girls.  So, when Boo didn’t hit markers here and there — not concerned.  ‘It’ll happen’, I thought.  ‘It’ll come in his timing’, I thought.

But what will guarantee the clarity?  Why hadn’t I heard many individuals with ds having clear speech, and for the ones that did, what is the difference?  Will speech therapy give him that?  These were some of my glaring concerns.

So, the Kansas City Down Syndrome Guild, which I belong to, brought in a speaker for a conference from an organization that sold some of the products I had actually been using with Boo.  I’d just never looked at the parent company to know what they were all about.  I thought they merely manufactured/sold tools/manipulatives therapists used.

I got an education.  The organization is TalkTools, and their website can be reached by adding a dotcom to the end of their name.  You can check them out for yourself.  The Speech/Language Pathologist who started TalkTools, Sarah Rosenfeld Johnson, calls her method and approach Oral Motor Therapy.  Why so?

Let me share with you my understanding of her approach vs. typical Speech Therapy, which she does not recommend you stop using, but use in conjunction with her methods.  You and I, and other typically developing individuals have typical sensory perception.  We feel a finger tapping our lip, we can discern biting the inside of our mouth.  Our tongue “gets it” to mirror what someone shows us when they lift theirs to the roof of their mouth and says “like this”.  Our tastebuds can discern a wider range, with varying sensitivities to spicy and sweet. . . You get the picture.

People with ds and/or other individuals with delays/development issues routinely need more sensory input before they respond.  We take for granted that it “just happens” and no one had to teach us how.  But for these individuals, their muscles need training, and that is a part of what Oral Motor Therapy does.  The focus is on gaining the skills needed to perform feeding and speaking tasks that typically developing individuals do not need; to build “muscle memory” into them so they can have both the strength and stamina of the supporting structures, i.e., the jaw, lips, and tongue, in order to be able to speak all day, and to eat effectively, without fatigue.

Traditional Speech therapy, on the other hand, is not as focused on assisting the development of the supporting structures, as on the production of the outcome of these structures, i.e., getting the sounds out and/or resolving the feeding issues.  I’m not saying that there aren’t Speech therapists that use methods to try and assist in the outcome, they learn about the supporting structures, and many have employed methods they have learned by trial and error, or through experience over the years.  What I mean is that Traditional Speech therapy does not focus on the training of the supporting structures.

Here are two ways I can try and illustrate the point:  football players have strength, and  they train for endurance.  Somewhere along the line, someone figured out that their movements and performance on the field could be improved by incorporating training that engaged them in fluidity.  And, so the idea of ballet came to someone’s mind, and thus began a whole new level of football finesse.

My second example to illustrate the difference is for the ladies out there, a personal example of my own.  When I was young, I took piano lessons for ten years.  For the first eight years, I had three different teachers.  I would sit at the lessons, side by side with the teacher, or watch her.  She would inevitably play for me exactly what she wanted me to work on for the next lesson.  Then, she’d send me home with the assignments in the book.  My fourth, and final teacher played for me maybe, two times, before she realized I was playing by ear, and couldn’t read the music.  I learned more and improved more in those last two years by her forcing me to learn to read the music than the entire eight years prior, combined.

The desired outcome is the same.  The focus and methodology is different, even if there is some cross-over.

It was so very enlightening to hear this information about Oral Motor Therapy .  The therapist who was the presenter that day said something magical to me (to us, really, but I knew God meant it for me), she said, as I recall it, “There is no [physical] reason an individual with Down syndrome cannot have the same clarity of speech as you or I.”

Those were the words I’d been waiting to hear Boo’s entire life!  I am so excited about the prospect of giving him the tools (FINALLY!), to have the best speech he can have.  I’m not going to deceive you, this comes with a price, if you don’t have the insurance to cover it, but the folks there have the ability to help you figure out how to make it something your insurance will cover, if they can.

I’m eagerly awaiting the opportunity to get a hold of the resources I need so I can get started.   My little Boo is six years old now, and jabbers so very, very much.  I know he knows what he’s saying.  I can tell it’s clear as a bell in his head.  It’s just that not everything is discernible, and it all runs together, and only bits and pieces are clear.  But, now I get it.  Now I understand the things that were missing and why, and know what I need to do to help him.  This is one method.  There may be others — Oral Motor Therapy is the only one I’ve heard of so far that has a step-by-step, organized, methodical, measurable plan focused on reaching the desired outcome.

That, folks — that right there — it’s awesome!

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