Wednesday, June 29, 2022

 I often have people ask what things we use to help us get Ben to school on time and to help him to be as independent as possible.  Here is a must have item for our loved one with Down syndrome to help him navigate his day at school.  

First off the entire process of getting ready for school is a challenge.  We use quite a few items to help us along the way.  The first thing we use are lots of alarms.  The alarms tell Ben when it is time to do something, not me.  This helps to avoid a power struggle.  Sometimes on days when I can tell he is especially having a hard time focusing and getting ready for school, I will get out the count down timer.  The visual helps him know that time is ticking down.  The bad part is that he knows how to give himself more time.  

Secura 60-Minute Visual Countdown Timer, 7.5-Inch Oversize Classroom Visual Timer for Kids and Adults, Durable Mechanical Kitchen Timer Clock with Magnetic Backing (Red)

The last thing before getting out the door is always shoes.  We have tried a couple of other no tie options, but this one is Ben's favorite.  It looks similar to real laces, if you don’t look to closely.

HOMAR No Tie Shoelaces for Kids and Adults Stretch Silicone Elastic No Tie Shoe Laces

Monday, January 6, 2020

Basketball Season, Inclusion and More

This is a photo of Ben bringing the ball down the court yesterday during his 6th grade basketball game.  Shortly after this photo was taken, he called out the name of his team mate, passed him the ball and he scored.  An official assist!  Not that they keep track of that sort of statistic at this level.    It was a good day for him.  We got there in plenty of time, he sat with and warmed up with the team, and listened to his coaches.  He was so excited to play and did a great job of following directions

But it has been a lot of work getting here.  Sometimes when we get to practice, he is ready to go and he cooperates and listens so he can learn with his teammates.  Other times hes is not.  This last practice we were late getting to the gym, and just missed out on the team running laps - something he adamantly refuses to do anyway.  But somehow that messed up his entire practice.  His amazing Coach kept trying to encourage him to engage, but for some reason he refused and just dribbled on the sideline or shot toward the wall.  Finally about half way through he jumped in and did pretty good from there on out.  But it is not always easy.  It made me wonder what it is like for him at school when he arrives in a classroom after the rest of his classmates.  Does he have trouble engaging?  I know they purposely have him go in late for band.  Is this helping or causing more problems? 

Sometimes seeing him in other settings gives me light bulb ideas on why things are occurring at school.  A similar thing happened this summer at Harrison Phillips #playmakers football camp. (which by the way was beyond amazing)  Ben would not engage with the other kids but would only sit and watch, and only when they left would he get up and try the activity  himself.  Was doing it with the other kids around too stressful?  I don't think so.  I have seen him play basketball in front of an entire crowd of people.  He loves being cheered on.   Or, more likely, is that what was happens to him at school?  Does he only get to try things only after all the other kids are done?  I don't know for sure, but I put my money on the latter. 

Basketball is his happy place.  The gym is not doubt, thanks to fantastic and patient coaches, the most inclusive place in his life.  We are so grateful to everyone who has helped him get to where he is today.  I asked him the other day who his favorite basketball player was -thinking he would say his older brother.  Without a beat he said Coach Dan.  You know what Ben?  He is one of my favorites too!

Monday, July 22, 2019

Put me in Coach!

It may be the end of the baseball season, but this little guy had a day to remember. What to you do at the end of a close game? You sneak into the team bag and put on the catcher’s gear. He was so excited to be a “real” catcher.

Thursday, April 11, 2019

The Lucky Few Buddy Walk, DSAA Kearney

We were so fortunate to be able to attend the Lucky Few Buddy Walk, hosted by DSAA NE Kearney.
The event was held at the old Kearney High School which is now First Baptist Church.  It was a wonderful place for the event and the gym was spacious enough to hold everyone comfortably. 
We enjoyed the music, photo booth, cotton candy, and yummy food.  Ben enjoyed the gluten free pizza that we picked up from Flippin Sweet on the way there.  It was fun to go to an event and be able to enjoy the party!  Thank you Suzanne, Kiffany, Beth and Lindsay. 

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.  

Thursday, December 27, 2018

Basketball season

This year has been a building year for the EM Basketball team with a new coach and losing a few players.  Noah has been playing well and is doing OK with his move from playing the 1-2 position to playing the 4-5.  That's what growing over 10 inches will do for you.  The team has come up just short on a couple of games, that have been very exciting to watch.  Every game they are making progress and we can see Noah's confidence growing.

Noah Willey against AGHS
Here are the write ups from a couple of recent games.