StepUp for Down Syndrome

Hi!

                                                                            
This is Ben Willey.

It's time again to raise money for the
Down Syndrome Association for Families
of Nebraska (D.S.A.F.) with the newly named
StepUp for Down Syndrome Walk on Saturday,
October 2, 2010 at Antelope Park in Lincoln.


How can you help? Many different ways! You can  donate on-line by going to Ben's Brigade team page https://www.dsafnebraska.org/pledge.php?team_id=152.  You can donate by check made payable to DSAF of Nebraska (put Ben’s Brigade in the Memo)and send it to CCSUW, c/0 DSAF, PO Box 57362, Lincoln NE, 68505. Our goal this year is to raise $1,000, so any amount will help. But the best way to show your support, is to register and come walk with us on Ben's Brigade. My family would love to see you there! To register, go to https://www.dsafnebraska.org/buddywalk.php?action=user. Be sure to register by September 3rd to get a free T-shirt with your paid registration!
The D.S.A.F of Nebraska has given Mom and Dad a lot of helpful information and support through my first 2 years of life! This is our ONE and ONLY fund-raiser and the money raised from the StepUp Walk will pay for information for parents and educators, programs for families impacted by Down Syndrome, fun outings for my family, and much more!
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! Here is a link to the website where you can find more information: 2010 Step Up for Down Syndrome Walk

Don’t forget your donations are 100% tax deductible.
Let's make this walk a successful one!
Thanks for reading. Thanks for donating. Thanks for loving me for me!

Love,

Ben

Randy, Angie, John and Noah Willey

County Fair

This week was our county fair.  We had lots of fun.  John took quite a few projects this year including photography, cooking, Youth in Motion, Heirloom Treasures, Care-n-share and entered the Presentation and Performing arts contests.  He got 10 purple ribbons and 3 blue ribbons, and one grand champion for his presention on the StepUp for Down Syndrome Walk.  He gets to go to the state fair with his white chocolate and devils food cookies, his Youth in Motion Activity bag, and his power point presentation.  Noah is in his third year of 4-h as a clover kid.  He also took photography, and a some care and share items (items donated to the needy of the county).  Here are some pictures from the county fair. 

Bath Time Fun!

athtim
The other day I heard Ben in the bathroom, so I asked John to check on him. You may remember a previous bathroom incident we had with toilet paper, if not check here. John came out and said, "I think he wants to take a bath". When I asked why he replied, "because he is already in the tub playing with his toys. I ran in to find Ben having the best time playing in the tub. I grabbed the camera, and snapped a couple of shots, and said "Ben how in the world did you get in there"? So he climbed out to show me, then climbed right back in. However, his climbing in is more like falling in. When I told him to be careful, or he would bonk his head, he proceeded to purposely bonk his head and then giggle. It was hilarious. Thanks for keeping us laughing Ben!

2010 USA Special Olympics Update

Driving down town in Lincoln to drop my boys off at their summer camp was all it took for my excitement to come back.  After seeing all the teams on Monday morning, walking on the UNL campus to their events, and driving by the Special Olympics town, I could not wait to experience more. 

On Tuesday Ben and I had some time before we could pick up the big boys, and the Basketball venue was on the way, so we stopped.  The game we saw was Men's Basketball.  Texas vs. Indiana.  I was surprised at how physical the game was.  We did not get to see the whole game, and I can not really remember who was even ahead, since we were cheering for both sides.  Every time a basket was made Ben would cheer and clap.  He was flirting with everyone.  I have never seen him quite so outgoing, practically lunging out of my arms to go to complete strangers.  It was as if he know he was in a place where he would be loved and accepted by everyone.  In the short half hour we were there I had10-15  people come up and talk to me about Ben.  We go out in public daily, and while I might get a comment every now and then, it was nothing like this.   People would walk by and say "There is a future gold medalist".  Others, I could tell, were Mom's of athletes, who were remembering back to the days when their child was a toddler.  But soon it was time to go.

After I got the boys, I had planned to take them to Bocce, but they really wanted to go to Special Olympics town.   Ben was in the stroller since it was a few blocks walk from the parking garage.  There were 3 blocks fenced off around Pershing Auditorium with lots of different tents outside.  Some had vendors, free crafts, karaoke, a sand sculptor, souvenirs and a misting station too.  The boys enjoyed getting misted.  It was fun to watch everyone.  I bought a T-shirt, John got a hat and Noah got sun glasses.  The boys made pinwheels for Ben.   We watched a few groups of athletes perform choreographed routines to music with flags. 

The Sand Sculpture

Funky looking blow up by the craft tent

Athlete performances

Then we went inside the auditorium.   That is where they had the Sports Experience.  They had 11 Wii games set up, pool tables, ping pong tables, a volley ball net, basket ball hoops, and a putting green. 
They boys had a blast and did not want to leave.  Poor little Ben however, was not as impressed he bolted when I tried to let him out, so I had to fight him back in the stroller.  It was just not safe for him to run around in there with so many sports and bigger people playing them.  But finally I was able to talk the big boys into going home.

Wednesday after work, the boys have Piano lessons and Ben had therapy, and by the time they were done, there were no events left to go see.  Thursday after work we planned to go again, but could not find anything still going on at 4:00 in the afternoon. 

The Special Olympic Torch

Friday night was the closing ceremony.  I called the radio station about 30 times and finally got thru to get tickets.  The closing ceremony was good, but very loud.  There were 3 or 4 singers, that I had never heard of that performed.  They were OK but not my type of music.  An hour and a half into the program, Noah was really not enjoying it.  He asked me for the 20th time if we could go home, so I looked over at Randy and both he and Ben were sitting there covering their ears, so I agreed it was time to go.  John could have stayed for the whole thing if we would have let him. 

Small Change

The Color Guard

Singing the National Anthem

As we were leaving I decided to use the restroom before the long drive home.  While they were waiting, Randy and the boys struck up a conversation with a couple of swimmers from Arkansas.  The lady gave Ben her Special Olympics Arkansas hat, and was trying to convince us that swimming should be the sport we help Ben get into.   She had won 4 or 5 gold medals in swimming this week.  I did not think fast enough to grab my camera and get a picture, or to get her name.  But is sure was nice to meet her and get to know here a little bit.  Made me feel much better about leaving the closing ceremonies early. 

While I am still not sure if Ben will want to pursue any sports in the future, I do feel that after our experience this week, I will not hesitate to help him get involved in Special Olympics.  It was a positive and uplifting time for all of us. 

Speical Olympics - Mixed Feelings

The National Special Olympics start today, just 20 miles away from where we live.


When I first found out the National Special Olympics would be in Nebraska over a year ago, I was so excited. I went and signed up on line to be a volunteer right away. I wanted to help out and learn more about the Special Olympics, in case it would be something might want to get Ben involved with in the future.

Now a year later, with the opening ceremonies just hours away, I don't have that same excitement.

First, they lost my on-line volunteer registration. OK. Not a big deal, I just re-registered. I also encouraged others from the DSAF to sign up too, and even called in to have my name put down as being the contact for our group. Then I waited, and waited, and waited. Others reported getting emails, but I did not receive any. I went on-line numerous time, each time having to reset my password and followed all the steps for volunteering. Still I got nothing.  I sent an emails, left phone messages, asking for information, and got...you guessed it, Nothing!

While speaking to others about their experiences with volunteering, I got similar stories of frustration. One person was told that the on-line registration system was not very reliable. Obviously. How can they pull off an event this huge, with out a reliable on line system? I hope for the sake of the athletes, it goes smoothly.

I had also heard, from other parents that there were some hard feelings about how the athletes were chosen to participate in the games. In Nebraska, the athletes were chosen in a lottery system, and not based on performances in the state games. Supposedly one parent, who was upset that their child was not chosen, was told that the National games are about bringing celebrities in and raising money, and are not really about the athletes. Really? I doubt that Eunice Kennedy Schriver would agree with that. Now to be fair, I did not get this information first hand, and am sure it was passed along and modified somewhat along the way, but still.

It does make me wonder, as I see many of the big companies in Lincoln, proudly displaying flags announcing their support of Special Olympics, and encouraging their employees to take paid time off to volunteer. Each taking out ads in the paper to show how much they are supporting the event. Almost as if they are trying to one up each other. Who is this really about?

I don't know yet if the Special Olympics is something we will pursue in the future for Ben. So many have fought for inclusion for our children, and in a way I can see how participation in the Special Olympics might be seen as a step back from that philosophy. I know in my vision of Ben's future, I see him at least playing t-ball and maybe baseball in our small town community, with his peers. It may or may not happen, but I hope it does. Only time will tell.

So here I sit, with nothing to volunteer for. Which is OK, as it now gives me more freedom to view the games as a spectator.  I will still take my boys to the games and Special Olympics Town as long as we can find a place to park. And we will cheer for the athletes. Which after all, is what the Special Olympics should be about.

Make Me Laugh.

I often get photos of my kids that make me laugh every time I see them.  Here is one of Ben trying to learn how to eat oatmeal with a spoon.   He is pretty good about getting the food in his mouth, but also gets it lots of other places too.