Down Syndrome congress

We attended a Down Syndrome congress conference last month.

Libby Kumin was invited and I attended two of her sessions (speech from birth to 5 years, and the educators session speech for K12). Remember the speech book I didn't like? I liked her in person a lot, she is an engaging speaker. Very clear presentations. Speaking about the nine types of intelligence (and how only two are tested and appreciated in schools), she gave this quote by Albert Einstein: “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”  Mrs. Kumin recommended using pacing boards to increase MLU (mean length of utterance), even at young ages. Our speech therapist liked the idea too, my son might be ready for this. We are trying to move from mostly one-word phrases to mostly two-word phrases.

I've made these pacing boards - actual size - one face has 2 circles, the other face has 3 circles. I've cut them, put them back to back, and then laminate them. I've made 5 pacing boards. My husband and I carry one on our back pockets, one for the dinner table, one for my son's room and one to spare. It's such a simple idea, I hope we'll have the patience to make it work. Our speech therapist showed us how to use them for words, but also for syllables. We are working on "ba-na-na". My son skips the leading "ba" syllable. First, we model, pointing to the circles, second we do hand-over-hand with my son, and third we encourage him to say it.

I've also attended a session on behavioral workshop. The speaker made an effort to put behavior issues in perspective. Highlighting the fact that children with DS often "misbehave" out of the frustration of not being able to negotiate their position or their role. It wasn't bad, but nothing really new in terms of advice, especially if you've read enough positive parenting books.

• reinforce desired behavior
• do not reinforce undesired behavior (aka ignore)
• model desired behavior
• redirect
• distract and redirect
• connect and redirect
• give choices
• do not get personal when angry (do not make eye contact, raise voice, get agitated) 
• picking battles (non-negotiable, situation dependent, whatever)