A Little Something Extra

Friday, August 19, 2011

We interrupt this blog...

... to blog on someone else's blog.  Yes, I guest blogged at Lisa's blog today.

For my Ds peeps... you're right... there's so much more to say.  I should have written about how so many families who have been blessed with a child with a little something extra have decided to add ANOTHER child with designer genes to their family.  I should have written about the horrible conditions in which children in some other countries live when they are abandoned due to the fact that they have Down syndrome.  I could have written about the many successful young adults I've met who jump into life with confidence and succeed.  I could have shared more about therapy opportunities, medical advances, etc.  And I could have written about the marvelous family (YOU!) I've met, either in real life or here in the blogosphere or on Facebook, and the support we have found through you.

I wrote quickly.  And probably missed some opportunities.  But I'm grateful to have had the opportunity to write something that will be read primarily by moms (and dads) who are not blessed with the gift of a child with Down syndrome.

Tuesday, August 16, 2011

NDSC: Behavior and Communication

I had the opportunity to attend a workshop at the National Down Syndrome Congress (NDSC) annual convention in San Antonio earlier this month.  I enjoyed the speaker, Scott Shepard.  Some of my peers were critical of the seminar that he did not speak from an early childhood perspective (they wanted to know how to address specific issues such as stop-drop-and-flop or "runners", etc.).  But I've never attended any sort of behavior workshop in the past, so I did find the general information to be helpful.  I'm of the opinion that if you can walk out of a workshop with at least one or two "to-do" items, then it was a beneficial workshop.

Here are my notes.  Even if you aren't blessed with a child with an extra chromosome, I think you might find some of these thoughts beneficial in your parenting of your "typical" child.

What is the goal?  To UNDERSTAND the behavior and WHY it is happening.  ALL behavior has a COMMUNICATIVE purpose.  By "listening" to what the behavior is saying, we can understand the reason the behavior is happening.  So look at behavior as a language.

What IS behavior?
* a STRATEGY we use to get our needs met
* a METHOD of communication
* serves a PURPOSE and is MEANINGFUL
* includes GOOD BEHAVIOR as well as behavior that appears CHALLENGING

We need to teach replacement behaviors.

The A-B-C's of Behavior:
Antecedent (what happens before the behavior)
Behavior (an observable act)
Consequence (outcome or result of the behavior)

Don't just look at the frequency of the behavior... also look at the severity.  For example, your child's teacher might mark down that the child STILL has a temper tantrum at the beginning of each class.  But it's important to note and acknowledge that the tantrum has gone from 30 minutes to 30 seconds during the course of the semester.

(side note: visual schedules are VERY important for our kids)

Spontaneous reward systems work best.  (okay, I wrote this down, but now I can't remember the answer to "Why?")

Elements of communication:
7% verbal
38% vocal
55% non-verbal

We need to say, show, and do.
* Say what you want people to learn, show them what you mean, and do it with them so they understand HOW.

Basic reasons behavior happens:
Escape (avoid)
Tangible reward

We all have the same needs, but we need to change the times, tools, locations, etc.

* Avoid response-cost programs (meaning... don't take away something that the person has already earned)

It's okay to get angry... it's how we DEAL with the anger that gets us into trouble.

My "duh" moment, but worth reminding myself: "There is an inverse relationship between a person's social and communicative ability and behavioral issues."  Think: toddler tantrums.  Also, remember that this can be one of the main reasons people think that our kids with designer genes have behavior issues.  Their communication skills tend to lag the general population, so their "toddler behaviors" tend to last beyond the toddler years.  This is why we focus so much on speech and language with Micah.  In my opinion, the best way for him to feel included with his peers is for him to be able to communicate with them.  And for those of you who have non-verbal children, my recommendation is to find a way for them to communicate with you.  That might require an augmentative communication device.  Whatever works.

Tuesday, August 9, 2011

NDSC debrief

This past weekend I had an opportunity to attend my second National Down Syndrome Congress annual conference.  This year's conference was in San Antonio (where it was a tad bit warm).  The whole family went last year.  It was logistically crazy but a lot of fun.  My mom came to help with the boys.  We also utilized babysitters (this year's conference offered childcare during workshop sessions).

This year, I went solo.  I met a 10-yr-old boy on the airplane.  He was fabulous: very confident, obedient, well-mannered, and he spoke very well.  I knew after meeting him that there would be many times over the weekend that I would wish I had Micah with me.  The reality, however, is that I could not have taken Micah with me.  He still has auditory defensiveness.  A large room is overwhelming to him.  And he still naps (thankfully!).

I really don't know where to start.  My mind has functioned in FIFO (first in, first out) mode, so I'm still thinking primarily of what I heard on Sunday.  So maybe if I put some bullet points here on the blog, I can come back to it with more detail by topic.  Please comment and let me know which topics you'd really like to hear more about.
  1. An amazing young woman, who happens to be a sibling of a young man with Down syndrome, spoke about growing up in Holland.  Fabulous!  Her name is Jenni Newbury, co-founder of Camp PALS and employee of Special Olympics.
  2. Lots of great workshops:
    1. Inclusion in a private school (Nashville peeps, did you know about what is going on at FRA, of all places?) (I can't start on that right now or I'll be up all night)
    2. Gigi's Playhouse - We MUST get one (or multiple) going in the Twin Cities.
    3. Complex medical conditions affecting education
    4. Behavior and communication
    5. and others that I'm looking forward to listening to when I receive the CD of the conference
  3. Pre-conference session on developing a reading program
  4. Varying opinions of inclusion... "full inclusion" "mainstreaming" "pull-outs"... what does it all mean? and what's best for YOUR child?
I'm planning to do separate blog posts for those topics.  Feel free to chime in with your interest level and I'll prioritize accordingly.

FYI... next year's conference is in Washington, DC, from July 20-22.  Hope to see you there!