Cookies and Crayons

A friend of mine reminded me of a poem today. I thought it was so thoughtful that she reached out that I wanted to share it.

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Today, Dougie started a new type of therapy. Our therapist recently took a training course in the PROMPT method and felt that Dougie would be a good candidate for it.

What Is PROMPT?

PROMPT – “Prompts for Restructuring Oral-Muscular Phonetic Targets” is a technique that uses tactile-kinesthetic articulatory cues (PROMPTs) on the jaw, face and under the chin, to develop or restructure speech production. The PROMPT-trained speech-language pathologist helps to manually guide articulators to help the child produce specific sounds or words. The clinician uses his/her hands to cue and stimulate articulatory movement, and at the same time helps the child eliminate any unnecessary movements.

When she brought him back, she was clearly very pleased with how the session went. She said Dougie responded exceptionally well. She gave me a few demonstrations of the progress they made. It was remarkable!! In tried getting a short video of Dougie doing it at home but the camera messed it up and then Dougie decided he was done making videos.

The only disadvantage to this therapy method is it is not something we can work at home. Parents are discouraged from “prompting” their children because the method is quite difficult and you can just get them confused. Having seen some of the methods used, I can see why they say that. We’ve asked our therapist for some advice on what we can do at home though.