3 on the 21st Blog Hop

For today's 3 on the 21st Blog Hop, hosed this month by With a Little Moxie, we are asked to post the following:
One truth (about Ds/our lives with Ds)
One tip (- information on something related to Ds/raising a child with Ds/or just parenting in general)
One photo

This is my first blog hop in a while so here goes:
  
One truth:  Kids with Down syndrome generally have a receptive knowledge that far surpasses  their expressive communication skills.

One Tip:  Sign Language and teaching reading as soon as a child understands 50 words, can help parents and educators have a more accurate way of measuring a child's receptive knowledge. 

One Photo:

This is a photo of Ben reading one of Mommy's books.  It does not matter if it is thick or thin, photos or no, Ben loves books.  He once carried a phone book around for a full week.  Took it every where he went and tucked in into bed with him at night. It was cute. 

Happy Blog Hop Everyone!

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.

Downs Ed Conference

This weekend, we went to KC to attend the Downsed conference sponsored by the DSG of KC.   It was a wonderful conference where speakers like Sue Buckley, and Julie Hughes (photos below) did presentations on a variety of topics, broken down by age groups of 0-5, 5-11 and 11-16.  We attended the 0-5 track and enjoyed presentations on developing language and communications skills, developing early reading skills, supporting speech and verbal memory, developing play number and cognitive skills and behavior.

Sue Buckley

Julie Hughes

During our 4 hour trip home (it was snowing...again) I had time to think about what I learned and all the concepts I wanted to try with Ben when we go home.   Here are some of the more important things from the conference:

Visual Learning -I had heard before that children with Down syndrome learn better when visual teaching techniques are used.   In fact, just last week I took pictures or everyday things around our house to make learning cards for Ben.   The Downsed group did a really good job of breaking down the learning process for children with Down syndrome so that I could understand why visual learning works so well.  They offer a system called See and Learn that is much like the pictures I too for Ben.  I just need to make a few adjustments to my cards, and they will be much more effective learning tool.

Errorless Learning - Start lessons out very easy so the child can not fail.   Then slowly start making each lesson a bit harder.  By using errorless learning, you can prevent children from getting frustrated and giving up.  We need to work harder at teaching our kids instead of testing our kids. 

Reading - Even very young children can be taught to read, first by word matching, then selecting and finally by word naming.  It has been found that children with Down syndrome learn better when taught whole words first and then after they have a good understanding of sight words, go back and teach them phonics.   One of the most impressive parts of this session was a video clip of a 4 year old boy with Down syndrome reading.  The lesson I took from this section, was that we should never stop raising the bar.  If we keep challenging our children, there is no telling what they will be able to accomplish. 

Language vs Speech - Ben understands a lot.  He just can't say anything.   He has a communication goal that up to now has been mostly sign and a few picture cards.   What I learned is that speech and language are two separate items that are often on very different levels.  We need to get him some actual speech goals starting with teaching him the letter sounds, while continuing to expand what he can comprehend.    

Behavior - Most children with Down syndrome are very social.  However because they are so darn cute, and they look at us with those beautiful eyes, they soon have many of the people in their lives jumping to help them.  Our job as parents is to give them chronological age appropriate boundaries and behavior goals.  They may need some support to meet these goals, but good behavior will only help our children later in their lives to be accepted by their peers. 

This is just a small part of the information we learned on Saturday.  I need to go back over my notes and pick out some activities to start with Ben.  We also brought home a video that has speech and language activities for preschool children with Down syndrome.  I look forward to watching it this week.

  This was my first conference and I had high expectations that I would learn a lot.  The good people at Downsed did not let me down.  It was a great learning experience.  Plus I got to spend a night out of town with my husband and without the kids.  This was Ben's first time spending the night at Grandma's.  He did great, but I think she would have liked to sleep in a bit longer.   

Parents from the DSAF of NE group who attended the conference.