Little Miss Adorable has the very low muscle tone of most babies with Prader-Willi Syndrome (PWS). She is little, floppy, and does not say much. All Little Miss Adorable’s muscles are affected by the chromosomal deletion that is PWS, including the muscles used for speech. Little Miss Adorable is a veteran of Speech and Language therapy, and starts to speak in clear phrases as we approach the door of her Speech Language Pathologist’s (SLP) office. Otherwise, her speech is pretty limited.
Little Miss Adorable had an NG (naso-gastro) tube for feeding (a plastic tube that went into her nose, down her throat and into her stomach) for the first six months of her life; she could not co-ordinate her muscles to suck on a bottle (breastfeeding was completely out of the question) .
At the age of 4 months she should have been making cute cooing noses and smiling. She was smiling, but would look at you and blow raspberries through her nose. Everything she does to communicate is slightly different than typical kids her age. But she does communicate. And she sure understands everything said to her.
Now we try to follow the advice the SLP is giving. We are told to ‘hold back’ and wait for Little Miss Adorable to use her words. So we wait. And wait. And Little Miss Adorable points. And smiles. And points. And looks at us like we’re idiots.
Little Miss Adorable communicates, just differently. When we first enter the room for playgroup, she waves ‘hi’ to everyone there and smiles broadly. She says ‘hi’ so quietly only I can hear.
I have been working on getting her to say ‘play doh’ for just over 8 months now. She can say ‘play.’ She can say ‘doh.’ Can she put them together? No.
At home and at the readiness centre I hold a chunk of play doh out of her reach and annunciate very clearly:
“Want play doh.”
She says, “Ya.”
I try again, “PLAAAAYYY DOOOH, PLAAAAAYYY DOOOH.”
She looks at me like I’m stupid, “Ya.”
I try to give her the instruction to say the phrase (which you’re not supposed to do) “Can you say ‘ I want play doh?’”
She says, “Ya,” and holds out her hand.
I give her the play doh.
I did this every day for 8 months.
At the beginning of this week Little Miss Adorable was going through the craft drawer and rooting through stickers, string, and crayons. She found a can of play doh.
She turns to me “Open it.”
Her speech is really not clear, and I was distracted, so I asked her, “Do you want crayons? Do you want to colour?”
“No, play doh.”
YAY! I picked her up, gave her a huge hug and opened the play doh. I told everyone her new word, and yes, it only took 8 months. I was so proud of her.
Fast forward to today.
Imagine my morning: two dogs with upset stomachs, dog puke on the floor, dog pee on the floor, dog poop on the floor. Hubby and I clean it up. I get breakfast ready, drop a wad of paper towels on another dog pile, and try to get ready to leave.
I’m holding Little Miss Adorable on my hip, and walk into my bathroom. Garbage and kitty litter strewn across the floor. Strangely, my toothbrush has been encrusted in kitty litter.
The word escapes my lips – “Shit!”
What does Little Miss Adorable say? “Shit!” and gestures violently.
I am dumbstruck. Wordlessly, I escort the two sick dogs into their kennel so I can clean up this next mess.
As I shut the kennel door, Little Miss Adorable says, “Bitch!”
She must of learned that one from her father. I swear it.