Thursday, September 29, 2016

It's Buddy Walk Time!

It is so great to be going to a Buddy Walk again.  I didn't realize how much it meant to us to be part of an organization who supports it's nations groups in a significant way, until we had lost it.   We are walking in the Omaha Buddy Walk to show support for more than 400,000 individuals with Down syndrome in the U.S. Please join us as we celebrate Ben on this special day. The event has fun activities for the whole family. It would be great to have you with us in person, but if you can not be there, please consider getting a Ben's Brigade shirt for just $10 and wearing it on that day and often through out the month of October for National Down syndrome awareness month.   We have a limited number of shirts left and they look like this:
Contact us if you have questions or want more information or to order a shirt!
Sincerely, The Willey Family

Sunday, September 25, 2016

Rough and Ready Rodeo Challenge

This weekend Ben was able to attend the Rough and Ready Rodeo Challenge at the Aksarben Stock Show and Rodeo.  It is a fun morning for kids with special needs to spend some time at the Rodeo and even participate, with out the crowds and noise.  Each participant is matched with a volunteer who takes them around the arena and introduces them to the cowboys and animals.  They even get to pretend to be cowboys when they got to ride horses, rope and get up close to a real bull and even pet him.  Ben had a blast.  The morning was followed up by some yummy ice cream and some delicious brownies that Ben couldn't eat, but both Mom and Dad were each able to sneak one and can verify that they were delicious! Ben seems to be getting much better at understanding when we tell him that a food will make his tummy hurt.  But I was not fast enough when the cowboy handed Ben some bread to feed Midnight.  Ben did not eat any, but we had to go wash his hands since he touched gluten.  It is crazy how gluten can pop up in the most unexpected places, but we were able to deal with it.  Enjoy some photos from the day.
Bronc riding

Picking out his stick horse.

He was NOT a fan of the mustache!

Lindsey was a GREAT volunteer!

He is getting to be a pro at taking selfies!

Mom and Dad even got to be in one of the photos.

This bull was seriously BIG!

This cowboy was trying to teach Ben to rope. 

Thank you to all the sponsors who helped to make this day possible.  It is so awesome to see these kids getting a chance to experience the rodeo at their own pace.  

Thursday, August 11, 2016

Signing Time Digital Sale!

Signing Time is having a huge Digital DVD sale!  All individual Signing Time Digital videos regularly priced at $9.99 will be just $5 each when you use code "5dollars". This includes videos from Baby Signing Time, Signing Time Series One or Two, Potty Time, Rachel and the TreeSchooler, Bible Fun or the new Signing Time Sentences.  There is no limit on how many you can get but the sale coupon code does not apply to pre bundled sets. You can get all 4 vidoes from the Baby Signing Time set, individually, for just $20.  I have never seen such a great sale.
 I just wrote a post the other day on in the Baby Center DS Community page about why the digital videos are a much better investment than the physical DVD's and now with this sale they are an even better deal!   This special pricing only lasts until Saturday August 13, 2016. Here is a  if you are interested. 
link to shop

2016 NDSC Convention

The 2016 NDSC convention was held last month in Orlando, Florida.  We were once again fortunate to be able to go as a family and take advantage of the many learning opportunities offered to us. Every time I go to a convention, I learn something or meet someone who completely changes how I think about  Down syndrome and the possibilities for Ben's future.

This year was no different.

For me the conference is a working vacation, I was again able to share Signing Time with the families at the convention.  The most rewarding part about being an exhibitor is when families of older kids come and tell me how important Signing Time was for their child growing up, and them thanking me for coming and being a resource for young families.  I was also able to share some tips and trick about learning and teaching ASL to children with Down syndrome at an hour and a half session called Jumpstarting Language and Learing using Sign Language with my friend Cyndi Johnson from Indiana.  This year I also provided some entertainment at Kids Camp.  It turns out, this is way different from doing a class, because at classes, parents are there to help wrangle kids in a typical 's class.  In the 3-4 year old room I had them all stand up to sing along with a song and they all ran off and took my speaker and ipad that I was using to play songs.  It was certainly a learning experience for me!

Our booth was next to Gabe's Glass Creations.  Gabe is a self advocate from Santa Fe, New Mexico and does beautiful work with glass.  Gabe took a shine to Noah and they quickly became friends. Making connections with other families is one of the best parts of the convention.

Something else that was new for me was taking along some of the buttons that Ben and I made before the convention.  It was great that Ben showed an interest in making buttons, but it does take much longer at this point to have him involved in the process. All the time we invest now might just be of a benefit later if Ben decides to go into the button business. You may be hearing more about Benjamin's Buttons in the not so distant future.  For now, we sold a lot of buttons and all proceeds will be donated to Down Syndrome Advocates in Action Nebraska, so it was a great fundraiser.

One of the highlights of the convention was the cast of the A&E show Born this Way.  Megan and Sean's had booths just down the aisle from me and it was so fun to see the cast reunion happening live in the Exhibit hall on the first night when everyone arrived.  I even got Steven and Megan to take a photo with Hopkins for our #whereishopkins campaign this summer.

Randy did not get to go to as many sessions this year since he had to help me work in the Signing Time booth while I was entertaining at Kids Camp, but he really enjoyed the sessions he attended.  He chose sessions on technology and came out of both sessions he attended very energized.  We are excited that this year all participants at the conference will get recordings of the different sessions, so I am excited to listen to many of the presentations I missed.

We also got to spend a couple days before and after the convention at Universal Studios.  I was absolutely amazed at how well Ben did on the rides.  But it was a lot of walking.  Just walking up to the gate the first day made us realize that we would need to get him a stroller.  He just did not have the stamina to go the long distances.  I can tell already that he is going to be a roller coaster junkie, just like his Dad and big Brothers.  He went on everything he was tall enough to go on, and even stood on his tip toes to get into one of the Harry Potter rides.  I felt him shaking as Voldemort pointed his wand at us and shouted a curse, but as soon as we were done he would say, "Let's go again".

The special needs pass did come in very handy and made the park much easier to deal with. If a ride had a 60 minute wait, we still had to wait that amount of time, but we got to spend half of that time out of line.  Once we figured out the system, we would sign up for a return time, then go use the restroom and get a drink.  When we came back they would let us in the express line and the wait was much shorter.  If you have a loved one with special needs, it is definitely worth it to get the disability pass.

We were a bit worried about how we would feed Ben and completely avoid gluten, but we were excited to find many gluten free options on quite a few menus.   One thing that really helped was that we traded our Branson time share for a condo just 5 minutes from the convention, and it had a full kitchen.  We were able to eat a safe breakfast every morning, which gave us a good start to the day. The condo really was beautiful and had a couple pools, a basketball court and a put put golf course, so there was plenty to keep us busy.  Having a child with Celiac Disease certainly makes us appreciate the Time Share so much more.

It was an awesome conference/vacation and we look forward to Sacramento next summer.  

Monday, March 21, 2016

Happy World Down Syndrome Day!

Here is a little video I made to help celebrate World Down Syndrome Day 3-21.  A huge thank you to my friends in the Nebraska Down syndrome community, and the on-line Down syndrome community who shared photos of your precious kiddos so that I could make this video.  Feel free to share it to spread positive Down syndrome awareness.

At school we are celebrating with blue and yellow cupcakes that have festive Birthday balloons and sprinkles since Ben celebrated his 8th Birthday yesterday.  He was super excited to go to the pot luck for the High School Boys Basketball team to celebrate their C2 State Runner Up Basketball season.

In addition to cupcakes, each kid will get a coupon for a free Subway cookie attached to a Random Acts of Kindness cards

Everyone have an awesome World Down Syndrome Day!

Wednesday, March 16, 2016

Congratulations EM Knights Basketball

Congratulations to the EM Knights for earning a spot in the Nebraska C2 Championship game, by beating Winnebago.  The game on Friday night was one for the record books.  We enjoyed watching and cheering for the team.  This article says it all.  WAY TO GO BOYS!