This is a link to a interesting article on development of reading and communication skills in children with Down Syndrome.  The research being performed is related to a controlled study of 40 children who are participating in this program to develop reading and other skills.   The study is quite interesting in that it follows the results I have experienced with my own daughter and the results other families I talk with are experiencing as well.

The research team is beginning working with the children at 2 years of age which is good, but we started working with our daughter from the day she was born by reading to her.  In fact, I remember quite well how I was catching up some casual reading and spent an afternoon reading a Stephen King book to her when she was less than a year old.

I truly believe reading to your children as babies has a great impact on their ability to read and communicate appropriately.  In Leah’s case, I believe she has strong reading and comprehensive skills because of how early we began reading to her.  She was able to experience how reading different types of stories had a different feel and a different style of communicating.  The tone I used when reading Stephen King to her was very different from when I read Dr. Seuss.  Reading from soothing books such as “Goodnight Moon” deliver a very distinct tone while reading from something more character driven such as “Where the Wild Things Are“. 

I think the most important thing is to really have fun with the reading.  Even though the kids are a little older now and can read their own books, we still use character voices and stomp around the room like a monster or make noises with our mouths along with whatever is going on in the story.  It doesn’t matter who is reading.  Both of our girls are good readers and it is such a pleasure to have them read to us – or us read to them.

We now have a “short-round” (baby) at home.  We had our third daughter in March which is why I don’t update my blog as much.  We didn’t start out reading as much with her due to the chaos of life, but we are making it a priority now.  It will be interesting to see if there is much of a differrence in her reading and communication development than the other girls since we got a later start with her.

Reading is so important to developing good and appropriate communication skills whether the child has Down Syndrome or is typically developing.  There are so many good stories for kids and so many fun ways of telling them.  To skip reading to your kids is skipping a really fun part of their development.

That’s my $1.98 worth.  Time for espresso…

I have to say that my daughter’s medical professionals are really working together well.  We have our challenges, but overall I am happy with the results.  Leah has been challenged with finding a medication that works for her ADHD that has few side effects.  We have tried a number of them with too many side effects for our comfort.  Yesterday, we visited Leah’s ENT to have her ears checked following yet another failed ear tube insertion.  Her doctor wondered if her latest side effects – twisting and pulling her hair out – could be from not being able to hear rather than side effects from the medication.  Her frustration and anxiety from not hearing could be the source.  It is something we never considered.  Good thing we have good relationships with these doctors.

In the same vein, Leah’s Pediatrician has designated herself as the single source for all of Leah’s medical information.  She has positioned herself to receive all reports and test results from each of her specialists so she knows what is going on and can better diagnose any problems with drug interactions, medical procedures, etc.  We are incredibly blessed to have her on our team.  I don’t know if it will help her business or not, but her name is Dr. Laura Buthod with Centegra in Crystal Lake.  If it doesn’t bost her business, at least send her some good thoughts.

On the support group front, our Down Syndrome support group is hosting Christie Clarke, founder of Out A Box Group to deliver a 6 week parenting seminar based on the principles of Love and Logic.  The seminar series begins Oct 1, 2009 and will be held in Crystal Lake, IL.  If you are interested in learning more, feel free to contact me at:  onepercent2@gmail.com

Have a great week.

I went to a meeting of our Down Syndrome support group and came away with the role of President.  I don’t know how it happened.  I think I got up to get a cookie and was “volunteered”.   Anyhow, I will take this role seriously and do what I think needs to be done to help our group get stronger.

Our DS Support group is called FINDS.  It stands for Family Ideas Network for Down Syndrome (http://findsdownsyndrome.com).  It has been around since the 70’s under another name – McHenry County Down Syndrome Support Group.  Anyhow, the group has seen great years and poor years.  Lately, we are in some of our worst years.  The active membership is low and it is the same 7+ people who are running all of the activities, events, leadership teams, etc.  year after year.  They are burned out and we need new blood to carry on.  Our group has about 100 families in it.  You would think there would be a lot of people willing to help out.  There aren’t. 

So, my major task this year is going to be locating new families to join our group and hopefully take on some of the responsibility of running it.  I am still formulating some ideas on how I am going to do this, but I already know I need to create some networking alliances with other special needs service providers in the area.  This is an area we have done poorly in and it should generate some new families. 

I should point out that my wife has been the President of our group in the past.  Her term lasted 7 years.  It was probably 4 more years than she really wanted.  When she found out I became the new President, she shook her head and just smiled knowingly.  My question is:  what does she know that I don’t?

There is a wonderful Down Syndrome Awareness group in the Chicagoland area called GiGi’s Playhouse.  They have incredible staff and provide a variety of activities for kids with Down Syndrome.  In addition, they are strong at developing awareness of what kids with DS are capable of.

June 14 is their 6th annual Fun Run & Walk.  The fundraiser is to support their free literacy programs for kids with DS.  Please consider helping this wonderful group and their effort to raise literacy in people with DS.  Here is a link to my fundraising page.  I have created a team called “FINDS Team” to actually participate and raise funds in this event.  If you wish to donate, please do so.  If you wish to run/walk with us, please do so as well.  My daughter Leah will be there as well as myself and hopefully, the rest of my family.

I appreciate your consideration.  Have a great day.

- Michael