The curious ‘wee-wee’ incident

Little Miss Adorable in a restaurant

Little Miss Adorable in a restaurant

Little Miss Adorable is a tiny preschooler with Prader-Willi Syndrome.  She had very poor muscle tone, and the muscles involved in speech are affected.  So her speech is really not clear.  As parents, we only understand about 30 percent of what she says.  At her age now, we should understanding 80 to 90 percent.  Her articulation is not clear, she leaves off consonants, repeats sounds in weird ways and says very few words clearly.

That does not stop her from communicating.  She says an awful lot.  We just can’t understand everything she says.

Most of the time we know what she’s trying to say, and we say the word clearly and try to get her to repeat the proper sound.  Here’s a short Little Miss Adorable glossary:

Kicky means kitty.

Book really means milk – she has a hard time with /m/ and substitutes /b/

Bap may mean nap or bath, depending on her mood and time of day. 

Dada really means pizza.

She can say “Iwantaglassofwater’ and the sounds run together.  But she cannot say ‘I want pizza (or dada).”  So she figured out how to demand things using “I need…”

I need play-doh!  I need potty!  I need baby!  I need Elmo!  I need Marney!(really Barney) 

She has mastered making requests (or demands).

Sometimes we have no idea what she’s saying.  Thankfully Little Miss Adorable is quite persistent.

One day after dinner, she announced “I wee-wee!”

She has never said this word before.  Surprised, and knowing this is not our family’s usual word for using the potty, we asked her – do you have to pee? Do you need the potty?

“No! I wee-wee!”

Huh?

We had no idea what she was talking about and she knew it.  She pointed at the table.  “I wee-wee!”  We offered various items – napkin, spoon, dish, pickles, water.  All wrong.

“I wee-wee!”

In desperation I looked at the table again.  Oh.  KIWI!  She wants kiwi fruit for dessert.  Wee-wee problem solved.

Motivation and energy are a big factor in her clarity and articulation.  If she knows she’s misunderstood she will do everything in her power to be clear.

One day she was demanding ‘book’ (really meaning milk).  So I handed her a book.  She told me, “NO! Mmmmmm…. Book!”

“You want a book?” I asked.

“NO! Mmmmmmm…. Book!”  she exclaimed.  She knew that by putting the /m/ sound at the beginning of the word I’d get it, sooner or later.  Of course I did, but it took a while.  To Little Miss Adorable’s credit, she never gives up.  She knows her thick-headed parents will figure it out sooner or later.

If highly motivated, like a visit to a restaurant, Little Miss Adorable can be startlingly clear.

At a recent visit she yelled at the server, “I NEED MILK!”

Startled, the server was taken aback at the intensity of the order and laughed, “You need milk?”

“Yes!”

Order taken.

What are your strategies for promting speech or communication?

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About Angela

Super-powered, Special Ed teacher and special needs mama to FOUR (!) children with an assortment of special needs; including Duchenne Muscular Dystrophy and Prader Willi Syndrome. Our family features a heavy dose of good ol' ADHD). I blog about our halfpastnormal life.
This entry was posted in Adventures of Little Miss Adorable, Langauge and Swearing, Speech and tagged , , , . Bookmark the permalink.

4 Responses to The curious ‘wee-wee’ incident

  1. Ivy says:

    Our daughter, Hazel, had delayed expressive speech and articulation. Pretty much she had no consonants except “t” and “d” and really didn’t seem to understand syllables. So if she needed to use the toilet, she would say “tuhhh” and think she had communicated effectively. She was able to learn a few ASL signs, however. We taught her signs for her most basic needs: water, food, toilet, milk (which meant nursing), and “that hurts”. We encouraged her to get up and show us what she wanted since her mobility was basically typical. Once she got those signs, we worked on “thank you” (which came easily) and “please” (which pretty much seems to be a vocab word for the 5 and up set).

    We also worked pretty hard to anticipate her needs so that she would be less frustrated by always having to ask first for what she wanted. We tried to follow a stable rhythm (with direct instruction) of waking up at the same time, always using the toilet first thing, playing outside, playing inside, snacks and meals, bath and bedtime. We were very predictable when we were at home so there was less to talk about there. (And I still pretend I can’t understand complaints or whining.) When we were out, I always brought snacks and water and a change of clothes, and I mandated trips to the restroom on a frequent basis. Perhaps it was overly controlling, but it meant that we could usually get our jobs done fairly conveniently, without having to talk things through all the time.

    I was always one to talk to my babies, in my clear, usual, adult voice a lot. We sang lots of little songs and nursery rhymes. None of that usual stuff seemed to have any impact on Hazel but I did it anyway. Much pleasanter, in my opinion, to chat our way through the day, even if it was completely one sided. She could hear well and must have soaked in a pretty good vocabulary because I was in monologue about what we were doing all day. “Now we’re at the grocery store. See how these oranges and ripe and bright? Look at those red, red apples! Apples. Yes, I like apples….”

    What helped the most, of course, was 3x a week speech therapy with a professional speech pathologist. Then we practiced whatever the speech therapist suggested, literally in every waking minute. She eventually learned how to speak clearly, though there are still some grammar tics that we don’t understand and she just learned how to recognize a rhyme at age 7. Now we’re on to learning to read and spell. When I tell people that we had to do a lot of speech therapy when Hazel was little, nowadays people don’t believe me because Hazel is so articulate and has such a strong vocabulary.

  2. Angelangela says:

    Excellent advice! We do not have speech therapy anywhere near that often. We’re lucky with Little Miss A’s determination to communicate. She just needs help forming the words. Than you for sharing your experiences.

  3. Wow, haha. Absolutely adorable 🙂 I would’ve panicked and thought she probably wanted to go to the loo. 🙂

    Hope all is well with you – sorry it’s been a while. I’ve been drowning in a lot of stuff, really.

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