Tuesday, March 13, 2012

Advocacy Conference

This past weekend I had the opportunity to attend the Down Syndrome Alliance of the Midland's Advocacy Conference in Omaha.  While I learned a lot, and enjoyed meeting and catching up with some of the other parents, I have mixed feelings about the conference.

The first speaker was Dr. Brian Skotko, A Board-certified medical geneticist at Children's Hospital, Boston and brother of an individual with Down syndrome.  Dr. Skotko is a dynamic speaker and I highly recommend that if given the chance, every loved one of an individual with Down syndrome should hear him speak.  However, I also heard him speak last year, and his presentation was that same, other than the few thing that had changed over the last year.  I do have to say however, that there were things I had forgotten that I was going to look into, so overall it was good to sit through the presentation again.

Then next presentation was technology.  Sean J Smith of Kansas University was the presenter, and when I walked in the room and recognized him, I began to wonder if then entire conference was going to be a repeat.   This session was awesome.  While again much was the same, I had forgotten many of the tools they had suggested, and made extra notes to myself this time to make sure I looked into many of the things he presented.  The unfortunate part of this session was that there was very limited time and we got started late, so there was no time to really dive into many of the topics.

Even though it was rushed, there was one thing that stands out from this session that was very disturbing to me. A question that was posed to the group that had something to do with what our expectations were for our children to read.  The point of the exercise was to show that we could text an answer and the screen would automatically update with the answers.  The first choice was that they be functional readers, (able to read recipes, signs).  Then next choice was that they would have meaningful inclusion into content instruction.  What shocked me was that over half of the attendees chose that their goal was for their child to be functional readers.   While I agree that all our kids need to be functional readers, is that all we are expecting of them?  I would argue that with 300 sight words, Ben already is a functional reader.  I know he can reads signs and has on many an occasion pointed out to me that we were coming up on the cheese area at Walmart, and that we had better stop and get some.  I have always felt very strongly that our kids will far outreach our expectations, if only we will let them and encourage them.  I don't want to just raise the bar, I want to throw the bar away.  There is no limit, if we give your kids the tools, time and the motivation to learn.  Maybe I am being too optimistic?  Time will tell.

The last session on the conference was on behavior.  It focus more on school Functional Behavior Assessments, which luckily we have not had to deal with yet.  However, I think I might be making some of the information on John and Noah, as their behavior could use some work.

Overall the conference was good, and I was glad I went.  It is obvious that I need to hear information more than once to realize its importance.  

After the Omaha conference I was still bothered by the reading survey, so I went home and watched the video I had purchased from Down's Ed International at a KC conference a couple years ago on Early Childhood Speech and Language.  In this video they said that when children with Down syndrome could understand around 50 words, they were ready to begin sight reading.  I remember coming home from that conference feeling, energized and hopeful, but also a bit behind.  Ben was 2 at the time, and we had not been working on anything that they had suggested yet.  Here is link to the post I did at that time.  However even after seeing all that was possible, deep down, I did not really think Ben would learn to read that quickly.  Sure when he went to school he would learn to read, but never in a million years did I expect him to start reading in just 10 months. Our goal really was just to help him with speech.  Now I wonder why I did not realize that Ben was ready or that I doubted that he could do it.  Oh yeah, I need to hear things more than once.  I forgot.

This summer, after we knew he was sight reading, we got 10 new Signing Time videos thanks to a sale the good folks over at Two Little Hands  were running for their 10th Anniversary.  Just two weeks after Ben had first watched the "Welcome to School" video, I wrote on his doodle board 'pay attention', and the little stinker signed it without hesitation.  I looked at him and said "Wow!  Ben that is amazing!"  He looked back at me and signed "Smart".  Yes Ben.  You are smart.