The Boys

The Boys

Thursday, October 9, 2014

Support Down Syndrome Research and Get Great Educational Products at the Same Time!

October is also Down syndrome awareness month. As a mother of a child with Down syndrome and a Barefoot Books Ambassador and Signing Time Instructor, this topic is near and dear to my heart.  Signing Time and Barefoot Books have played a huge roll in Ben's life.  Signing Time helped teach him to read before he turned three and Barefoot Books help keep him interested in reading.    To help give back, during the entire month of October 2014, I will donated a portion of my online and in person sales from ABC Barefoot Kids  and ABC Signing Kids to the LuMind Foundation for Down Syndrome Cognition Research (formerly DSRTF).

So why Down Syndrome research? In August 2014, our local Down syndrome support group, welcomed a special guest at our parent's night out event.    William C. Mobley is a Distinguished Professor and Chair of the Department of Neurosciences at UCSD. He also serves as Executive Director of UCSD's Down Syndrome Center for Research and Treatment. and the Florence Riford Chair of Alzheimer Disease Research.   At this event Dr. Mobley shared with us some news of his fascinating research and let us know just how close we are to having a drug available to help prevent Alzheimer's not only in the Down syndrome population, but in the general population as well.  It helped me to realize just how much research is going on that will benefit our kids, and how much funding is needed to help keep this research on track. 
I chose the Lumind foundation because it supports lots of different research opportunities to benefit the Down syndrome community. 
The LuMind Foundation founders are committed to opening doors for people with Down syndrome. They established the LuMind Foundation in 2004 to identify and fund the most promising lines of cognitive development research.
So if you would like to join me in supporting Down syndrome research and could use some award winning children's books or Sign Language DVD's, Books, or Flashcards  to help fuel you child's passion for reading or to help them communicate before they are ready to speak, please use one of the following links to start shopping now:

Thank you for Stepping Up for Down Syndrome!

Thank you to everyone who helped our family raise over $1,600 for the DSAF of Nebraska.  Our organization also raised over $87,000 to help continue to support it's mission of providing support for individuals with Down syndrome, their families, friends, educators, and professionals who share in their lives.  This was my final year of chairing the event.  The Capital City Step Up for Down Syndrome Walk has grown significantly over the last 4 years that I have been involved.  I am proud to be part of a group of parents who worked together to grow the DSAF of NE to the organization it is today.  However, all the change and growth experience did not happen with out a lot of hard work, and I am ready to pass on my part of that job to others.  
Here are some photos showing the fun we had on Saturday.

Thursday, September 11, 2014

2014 Step Up for Down Syndrome Walk

Register for the Step Up for Down Syndrome Walk by September 14 and receive a FREE walk t-shirt with our team name, Ben's Brigade on the back!!! If you can't join us on October 4, no problem! You can register as a "virtual walker" and get a shirt mailed to you, so you can wear it, where ever you are that day.  Don't need a shirt?  Donations are appreciated too.  You can register or donate to Ben's Brigade by clicking HERE!

While we aren't quite at our fundraising goal of $2,000, we did raised enough to earn all three of our fact posters during our early bird fundraising contest.  Our photographer Erica Thompson of Images for a Lifetime built an amazingly cool set just for our kiddos, and Ben got to be one of the first ones to try it out.  While the idea was to sit or lay in the circle, Ben did not want to have anything to do with that.  He wanted to do just one thing.....
What you can't see in this photo is his big brother Noah who was laying on the floor about to get jumped on.  Erica got about 10 photos just like this and Ben had a blast!  

She did get a couple more good photos, but all of them have one thing in common.  If he was not jumping, he was getting into position to jump again.  

 This one is my favorite.  I call it his surfer dude pose.  I also reminds me of the opening of one of the James Bond movies.  

If you can join us at the walk you can see all three of these posters in person along with over 100 other posters featuring Nebraska kids.  

Thank you for supporting Ben's Brigade!

Wednesday, August 13, 2014

NDSS Time Square Video

Once again a photo of Ben has been chosen to be shown on the big Sony Screen in the heart of Times Square in New York City as part of the video that kicks off the National Buddy Walk.  It will be show on September 20th at about 9:00 am central time.  We are both humbled and honored for a photo of Ben's to be chosen again this year.  There were over 2000 photos entered and only 200 were chosen. 

This photo was taken at one of Ben's t-ball games and shows the pure joy that he displays whenever he is doing something he loves. Sports of any kind will usually bring out this expression or one of pure determination.  Way to go Ben!

One Proud Little Acolyte

Once again it took someone else to notice that Ben was ready to do something that  his peers were doing.

Let me explain.

We recently got a new interim minister at our church.  Every Sunday for the last year or so, after the service, Ben would get the candle lighters and go up to pretend to light the candles.  We would go up with him and keep him from smacking someone in the head with it.  But we did not think he was ready to light candles on his own.

So one Sunday after church our minister said to me "I noticed that Ben is interested in lighting the candles.  Can we put him in the Acolyte rotation?"  I said "Pastor, you do realize that our last church burned down?  I don't think I am ready to be responsible should that happen again".  She laughed and said let's give it  a try.  So we planned to add him to the rotation and send someone up with him just in case things did not go as planned.

The next week, it just happened that there were no other kids in church.  Here is the result.  You decided for yourself  if he was successful or not.  One thing I know for sure is, he was one happy and proud little acolyte that day. It was a win in my book!

Tuesday, July 15, 2014

2014 NDSC Convention Summary

This past weekend we were blessed to be able to drive to Indianapolis to attend the 2014 National Down Syndrome Congress annual convention.  While we were going to make it into a small family vacation, John threw a wrench into the plans by requesting to stay home to attend his district baseball tournament.  So we lined up a friend to stay at the house with John, and loaded up the car. 

When I say loaded, I mean loaded. 

The shelf in between the seats turned out to be wonderful as it kept Ben and Noah from fighting the entire trip.  Car makers seriously need to consider installing some type of safe boundary to keep kids from fighting in the car.   We had to pack tightly, because I was hosting both an ABC Signing Kids and the DSAF of NE booth at the NDSC Exhibitor fair.  Here are photos of the booths.

The Exhibitor fair was such a blast. 
 I loved meeting everyone who came around to check out all the displays.

Here are my top 10 NDSC conference highlights in no particular order.
10. There were a couple times Ben needed to be at my booth, and he did a good job of sticking around and not running away.  (Although he did take me on a pretty fast tour of 3rd floor one day on the way to kids camp. )  The main reason Ben stayed put was he had Rachael from Signing Time there to keep him company.  Loved watching him dance, sing and sign along with the iPad.

 9. Learning that Noah got to feel special when the Brother and Sister field trip busses were given a police escort to the Indianapolis Speedway. 
 8. We finally got to meet our Facebook friends Denise and Ella.  We tried to meet up last year, and it did not work, and this year I was again afraid we would miss each other, but they stopped by just as we were packing up on the last day.  It was to great to finally meet them in person.
 Ella is such a sweetheart. 

7.  One for the memory books occurred just after we got back to the room that first night after swimming.  It is a terrible feeling to realize that your 6 year old just snuck out of our hotel room and is running in the hall way.  It is an entirely different feeling to realize that he is also wearing nothing but a string backpack and a smile, and there is a large group of people getting off the elevator heading straight for him.  Luckily the sight of strangers turned him around quickly and we were able to usher him back into the room quickly.

6 Not even 5 minutes later with Ben safely in the room (but still naked) and the door blocked by a cooler, did I realize we were still flirting with getting kicked out of the hotel when I noticed that Ben was standing naked in front of the large floor to ceiling windows waving at the folks walking down the street.  Got to love a kid with absolutely no modesty.

5. Another highlight was meeting someone who actually follows this blog!  I won't reveal your identity here, but you know who you are and I was very happy to meet you!.  Thank you for stopping by to introduce yourself and I wish we had gotten more time to visit.

4.  There were so many wonderful self advocates that I was able to meet and get to know a little bit.  Curtis and Todd were two of my favorites.  The NDSC convention is billed as the largest family reunion and they do a really great job of making everyone feel like they are indeed part of one big family who is tied together by an extra chromosome.

3.  Ben meeting a little boy named Aaron at my booth and having a wonderfully tender moment.  They kept giving each other hugs and when they broke apart Ben signed friend and Aaron signed it back.  Love how sign language has opened up the world of communication for so many of our kiddos.

2.  It was wonderful getting to meet, work the booth, and present with fellow Signing Time Instructor, Cyndi Johnson.  She is a fabulous speaker and made my first (and hopefully not last) national presentation very easy.  Unfortunately, we were so busy most of the time, I did not think to get a photo of us together.  That will just mean that we need to find another excuse to get together again in the future so we can get a photo.   
 While there were many awesome moments at the conference,
the one that stands out to me the most is this:
1. The award acceptance speech given by Patti Saylors at the banquet, where she talked about all her efforts to make sure that what happened to her son Ethan never happens to another one of our loved ones with disabilities. She is working to make sure that first responders across the country are all properly trained on how to deal with individuals with disabilities.  If you are unfamiliar with Ethan's story, he was killed when some off duty policemen improperly restrained him when he refused to leave a movie theater  She is an amazingly strong woman and I can assure you there was hardly a dry eye in the banquet hall. ‪#‎justiceforethan‬
Next year's convention is going to be in Phoenix.  Not sure yet if we will be able to make it since we won't be able to drive, but I have to say I would love to get together with my new extended family again really soon!