Lincoln Star City Buddy Walk!

Thank you to Down Syndrome Advocates in Action for supporting all families who have a loved one with Down syndrome in Nebraska.  Thank you also to all the wonderful volunteers for helping make the event such a success.  This is the first year I got to actually walk at the walk and was thankful to have volunteer photographers to help us capture the day.  Each year the Buddy Walk has doubled in size and we are grateful for everyone who comes out to support the local Down syndrome community so that we can make sure there are no families left behind.  

Thank you also to Shauna and Deb for helping to make this event possible!  Every individual with Down syndrome deserves to be celebrated and everyone is welcome at DSAA NE! 

Thank you to all our friends and family who helped Ben's Brigade earn 3rd place in fundraising! Thank you also to everyone who purchased necklaces, earring, or EM Sports photos.  Ben was so proud of the medal he received.  

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.  

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! 

 

NDSS Times Square Video

I am proud to announce, for the 2nd year in a row, that Ben's photo has been chosen to be in the video that will be shown at Times Square in New York City, to help kick off the National Buddy Walk on Saturday, September 21, 2013.

Ben is a little brother, of two big brothers, who love sports.  In his young life, he has already been to more baseball, basketball, and football games as a spectator, than some people will attend in their entire lives.    While at his brother's baseball games, he loves to wear his umpire mask, squat down behind the fence and call balls and strikes with the umpire.  He has caused more than one umpire to turn around, ready yell at the person contradicting their calls, and you can instantly see the smile appear on their face when they see who the culprit is.  Sometimes they even come over to visit with Ben between innings, which makes his day.

He is no different with basketball as you can see here.

I knew it would be huge for Ben to get to play sports like his big brothers, but the reality did not hit me until he got home from his the first night of practice.  He ran in the door, gave me a huge bear hug and exclaimed, "Mommy, I a baseball player"!  This was the first year he was old enough to play, and was on our local t-ball team with his typically developing peers.

Did he need some extra help getting lined up to bat and getting his helmet on?  Yes.  Did he need some help staying focused in the outfield, when no balls were coming his way?  Yes. Did he need help keeping track of his hat and glove?  Yes.  But so did a lot of the other kids.   Did he need help hitting the ball, running down a grounder or knowing where how to run the bases?  No.  He had paid enough attention at some of the other games to know what to do.

So the next question is how did photos of Ben get selected 2 years in a row to be one of the 200 chosen to be in the video when there were over 1,100 submissions?

I have a theory.

The purpose of the video is to promote the value, acceptance and inclusion of people with Down syndrome.  Unfortunately there are lots of people in the world today who don't realize that individuals with down syndrome are more like everyone else than they are different.  The first 4 years I sent in the cutest possible photo I could find, but none where chosen.  Last year I chose a photo of Ben playing his brother's drum set, because I thought it showed a person with Down syndrome doing something that many people would not realize they were capable of doing.  This year I chose the baseball photo, since it showed how much enjoyment he got from being included with his classmates.

My husband and sons wanted me to submit this photo instead.

It was taken just after the first photo and they felt it showed Ben's determination to hit the ball.  While I do like it too, a Mamma's heart almost always goes with the smile, and since I was the one sending it in, I got to choose. By the way they also wanted me to point out that the pink bat was not his.

To view last year's NDSS Times Square Video click here.  Ben is at 14:35.

Happy Fall Ya'll!

The local Down synrome support group went to a local pumpkin patch this weekend.  We did not really mind that it was muddy since the rain that fell the night before was the first we had in weeks.  The patch was fun and our group pretty much had the place to ourselves to start the day.

 

They have a Scary Farm at night.  I think we will pass on that for a few years.

Ben really enjoyed the big bikes of the Roca 500.  John did not enjoy them as much due to the wet ground.  At least he got a good workout from it all.

Then there was the giant slide.  I gave John strict instructions to go down with Ben, since last year I have a photo of John letting go of a terrified Ben.  However, this year Ben was able to control his speed on this very long slide, and went back multiple times. 

Unfortunately Ben's little hind end was not big enough to dry the slide off for John, so they both ended up with damp seats. 

John helped Ben dig in the corn.  Ben enjoyed making corn angels.  He was a damp, corn dust wearing mess when he got out. 

He was sad when John made him get out of the corn to go take the group photo.  

But being with Mom made it all better.  The kid can go from happy, to totally ticked off, back to happy, faster than anyone I know. 

Hope everyone is enjoying fall as much as we are!  

Next to figure out what everyone will be for Halloween.

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.

Capital City Buddy Walk

This is Ben .
It's time again to raise money for the Down Syndrome Awareness in Lincoln.

How can you help? Many different ways! You can donate on-line by going to Ben's Brigade team page by clicking here. You can donate by check made payable to DSAF of Nebraska and send it to The Willey Family (email me @ awilley1@yahoo.com if you need the address). But the best way to show your support, is to register and come walk with us! Our team name is Ben’s Brigade. My family would love to see you there! To register, click here. Be sure to register by September 20th to get a free T-shirt with your paid registration!

The walk is 1 mile around the Children’s Zoo but there will be so much more than just the walk! I know they have a lot of fun stuff planned for the kids! Click here to see the brochure.

Thanks for reading. Thanks for donating. Thanks for loving me for me!

Love,
Ben
Randy, Angie, John and Noah Willey

Ball Night and Bailey

Last week was the Annual Ball Night for our local Down syndrome support group. We got to touch base with a few of our new friends in that group, as well as meet a few new friends.

Also included in this post is a picture of our new puppy Bailey. We are not sure what to do with her, because she is contantly nipping at us. She really goes after Noah, to the point that he is scared of her. We really need to get her calmed down, or I am afraid she will have to go. Hopefully the weather will turn around so the boys can spend more time with her outside, and maybe she will calm down.