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!”
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.
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?”
What are your strategies for promting speech or communication?