The Speed of Inclusion

 This summer the alarm is set for 5:45 AM. Not by choice. I am not a morning person in any way. I enjoy sleep.

But I get up every day at that time to make sure Ben gets his medicine, gets dressed and is in the car by 6:15 to drive 10 miles, to the Jr/Sr High School to take part in the summer weight program. 

Young men and women regularly get up early to work on their fitness so they can become stronger athletes. 

Ben does not participate in everything. He is not a fan of the parking lot warm ups, though sometimes I see him doing the stretches by the side of my car. 

Most mornings I bring the puppy along for a good walk. Today I did not. So I walked by myself around this quiet,  peaceful town of 250. 

It is a beautiful walk. 65 degrees, sunny, a gentle breeze flowing.  I took in the bird’s chirping, summer flowers, occasional wind chimes, and the sound of a far off chainsaw. 

Just 2 weeks ago and f1 tornado came by this small Nebraska town. A few trees went with it. Some minor house damage. The tree I used to park in front of is just a jagged stump. Nothing major and no injuries, for which we were all thankful.  Volunteers were out in full force cleaning up the mess.  The pile by the school continues to grow. 

From across town, I can also hear the thump of a tractor tire hitting the ground. The weightlifting boys are working hard flipping the large tire across the football practice field. 

This is our second year of summer weights. Ben will be a freshman in the fall and last summer the junior high boys went just 2 days a week.  This year it is Monday through Friday. They split up and half go into the weight room and the other half go out to the football practice field for agility drills.

 Ben loves the weight room. He joins his group when they go outside but usually would just sit on the picnic benches or on the concrete at the nearby concession stand to watch. The grass is usually wet, and prickly when they lay in it, and the tractor tire that they flip is really big. I get how this is uncomfortable for a 14-year-old with Down syndrome and autism. Really a sensory nightmare.  But he pushed through, because he loves the weight room, the loud music, the time with peers. 

A day not long ago, as I walked toward the school, I noticed Ben’s group was outside. I looked to the concession stand to make sure Ben was in his usual spot. He was not. Sometimes he would run around the concession stand, when the others were doing something that was too much for him. I waited but he did not come around from the other side of the building. 

Mom instinct kicked in and I stared scanning the area for him. It did not take long to find him. In the middle of the group of boys. I was happy that he was with his peers instead of watching from the sideline. Two by two the boys would lift and flip the tire 3 times, then move to the back of the line. Ben was getting close to the front.  I watched to see what would happen. 

Ben was paired with a senior. One who did not need a second person to flip the tire. But as the two boys in front moved to the back of the line, Ben moved up and helped flip the tire. Ok, he didn’t help much. But he was there, and he touched the tire. Something I was not sure I would ever witness. It brought tears to my eyes. 

One year and eight days. That is how long it took from the first time Ben witnessed the tire flipping to feel comfortable enough to participate. 

Inclusion. We talk about it a lot. Ben does not always want to do what his peers are doing. Especially things that are challenging or sensory demanding. But once he becomes comfortable, he enjoys the activities as much as anyone. 

If we ask Ben if he wants to try something new, he will almost always say “NO!” Without really listening to what we are asking him to do. Our policy has always been that he has to try something. If he does not like it after 2 weeks he can quit. This generally applies to things we think he will like.  Like junior high track. The first 2 days of the season are always rough, then he loves it. 

Something similar happed with choir. When he moved to junior high and got a new vocal teacher, he would not sing with his peers. He would go, learn the songs, participate in some of the activities, but not actual singing. Then at the beginning of his second year he decided it was ok to sing along. It took a full year.

Imagine how many things our kids miss out on if it takes them a year to get comfortable. Things that they enjoy. Things that they need help accessing, but don’t know how to ask.   I know I am guilty of giving up after a much shorter time. 

Weights last summer were the same. He loves the weight room, so he puts up with the rest. Until he got comfortable with the rest. By the time he is a senior, I fully expect him to be doing it all. But that is 3 summers from now. We have lots of time to practice. 

I guess that is what inclusion in school is really all about. Time to practice, in a setting that is slightly more controlled. Time for peers to practice being around Ben too. 

If I had not had two older boys go through the summer weight program, I am not sure I would have even thought to take him. Sometimes we as parents, have to be creative when thinking of ways our kids can be included. 

Ben gets the benefit of a set schedule (something I struggle with) a good workout, time with peers. I get reason to not sleep in during the summer, time to walk, work on my computer, listen to a book. Any way you look at it, it’s a win. 

Except that 5:45 alarm part. 

 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) https://a.co/4zY76Nt

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 https://a.co/fLD79lb

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!

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.

https://www.facebook.com/angie.willey1/videos/10214333535401557/

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.  

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.

Here are the write ups from a couple of recent games. 

https://fremonttribune.com/community/cass-news/sports/bluejays-stop-knights-on-buzzer-beating-shot/article_c7a079c7-8a47-52a9-ad0d-ef430492de2f.html

https://fremonttribune.com/community/cass-news/sports/e-m-takes-defending-state-champs-to-overtime/article_8b933012-06b6-592f-90d4-204b8841843b.html

Inclusion, We Have a Long Way To Go.

Yesterday we wrapped up inclusive schools week.  I used to do much more to celebrate this week in past years because I thought true inclusion was happening in the schools around me.  However, as I continue to study IEP’s to help my son and other families in the community, I realize that true inclusion is not a reality for most students with Down syndrome in my state. 

Mainstreaming is the norm. 

Yes, kids with Down syndrome are being educated in their neighborhood schools.  They are often welcomed at lunch, recess, and they may even be included in a music or PE class or art class.   But in reality, getting them into general education typical classrooms is a struggle.    Before we go further, let describe what good inclusion looks like.  Good inclusion is where kids with learning disabilities are taught along with their typically developing peers in a general education classroom, doing work modified to their current level of education with or without a para educator to assist them.  This model of inclusion can and does happen every day in classes from preschool to post-secondary  educational settings across the country.  Not only does every study show that most kids with learning disabilities, achieve greater success from learning in in inclusive environment with support, these same studies show that typically developing peers do better in classes that include children with learning disabilities.  

So why isn’t every classroom in the state an inclusive classroom?  There are many reasons.  First off it is indeed more work for the teacher.  Think back to the days of one room schools where kids of all ages and abilities were taught together.  Modern teachers are not used to or prepared to do a lot of differentiated teaching.  Secondly, since there are a handful of students that do learn better in a quieter setting with more one on one teaching, and the school had to put in the time and expense to set that model up for one student, why not just used it for all the student with learning disabilities.  But in my opinion one of the most common reasons that inclusion is not practiced more is that because schools “tried it” and it did not work.  Often that means putting a kids in a typical classroom with little to no support and expecting them to know how to behave and keep up.  The term I use for this is bad inclusion, and it happens all too often. 

Yesterday I saw the movie “Wonder”.  In this movie a boy with a physical disability was included in a typical 5^th grade classroom and was finally accepted by his peers.  I think the overall theme of the movie is to show the growth in those around the main character Auggie.  His presence in school was not easy for him but it brought out the best in some of the people around him.  But Auggie did not have a learning disability, in fact he was far above his peers academically.  Do those same opportunities for growth occur when kids are tucked away in special needs classrooms?  I don’t think so. 

Last night at the end of my son’s JV basketball game there was a nice moment that many will feel was possible because of inclusion.  The other team had a young man with Down syndrome on the team.  With a few seconds left, the other couch called a time out, put in the young man with Down syndrome and drew up a play to get him a 3 point shot.  My middle son who was playing saw what was happening and told his team mates that no one was to block that shot and made sure he was guarding the young man.  The shot went up but missed by a fraction of an inch.  The crowd let out a collective sigh, but then one of our guys tipped the ball back to the young man.  He put up another shot that went in just as the buzzer went off and everyone in the gym cheered.   It was a special moment for this young man and a feel good moment for the fans.  But was it made possible because of inclusion?  I think it was, but it does show just how far we to go.  You see true inclusion will happen when nice moments like this become the norm.  When it is not a big deal to put a kid with Down syndrome in the game, or include them in a typical classroom with support, or have them participate in Holiday program without the teacher calling to say, don’t expect much from your child tonight.  True inclusion means accepting everyone as valuable members of the school. 

UPDATE*  The Omaha news station did a news story on the shot and even came out and spoke with Tommy and Noah about the shot.  Here is a link to the video
https://www.wowt.com/video?vid=468271653

So while we wrap up inclusive schools week, I hope those teachers who are rocking inclusion were truly celebrated and encouraged to continue their efforts.  I also hope that parents who feel that inclusion is the best and least restrictive learning environment for their child speak up, advocate and help make inclusion the norm. 

Mom Guilt

Mom guilt is a pretty rough thing.  Today I am feeling it a bit more than normal.  I'm feeling guilty because we took Noah out for his Birthday lunch at a place that is supposed to be really good about having gluten free options and are careful about cross contamination.  I listened to and trusted our server and as a result Ben ate gluten.  I should have known to double check her and when I did and realized Ben had gotten gluten, I felt so bad for not checking first.  It is not impacting him as much as it has other times, and he is  doing pretty good over all, but I can tell he is in some pain. 

After a full day we finally got home, and I got to work a while on restoring my computer ( my hard drive failed  and  I lost 20% or my data and all my programs).  The new photo software program has a face recognition feature, and I noticed a trend on the pictures of Ben.  Up until he started Kindergarten, he was chubby and bright eyed for the most part.  But then the weight loss and behaviors started to happen.  I knew at the time there was something going on with Ben, and I just could not put my finger on what it was.  In addition to  losing weight, his eyes often had those dark circles under them. The doctor called it allergies and did not think we needed to be concerned about the weight loss, but I wouldn’t let it go.  We finally got him tested for Celiac Disease and that was it.  Looking at this collage the progression of the disease is pretty easy to see.  Ben went from a happy, chubby little boy, to a sometimes happy, sometimes crabby little boy who looked sick, and is now heading back to being a chubby little boy as he has gained 10 pounds in the last 6 months. 

The photo in the center is the one that caught my eye the most and made me realize how bad he must have felt while is little body was not absorbing nutrients.  More Mom guilt.  I should have caught it earlier.  I am taking photos of him all the time.  Why wasn’t I comparing them to past photos? 

The first row of the collage above  shows him as what appears to be a healthy 3-5 year old. 

The second row shows him when the celiac started to become an issue and one photo from right after diagnosis.  6-8

The third row shows him on the road to recovery, age 8 to present, and able to gain weight and take in nutrients again.   

Thanks to the new photo software, I should be able to compare photos and plan to do so from here on out.  But there is still mom guilt……..

Finally his turn

I should have known that basketball would be in his blood.
You see he was supposed to make his entrance into the world on April 6, 2008. It was all scheduled and everything, but instead my water broke about 5 am on March 20th and the c-section needed to be moved up quickly.  Looking back now, I know why it happened. Thursday March 20th was the first day of the NCAA Basketball tournament that year, and Ben apparently did not want to miss out on any of the basketball games. He was just hours old when he got to "watch" his first game.   I do vividly remember, how great it was, when all the visitors and family left so I could  finally turn the channel to something other than basketball.

We have had a boy (or 2) playing basketball in our family for the last 9 years.  So Ben has literally grown up with it.  When he was smaller, and Randy was coaching, he would occasional y "warm up" with the team.  His favorite place was always right in the middle of things.

He has been to his fair share of games in his life.  But he has been watching and he learned quite a few things from watching players on the court.  Plus he loves to shoot.
At halftime, he shoots.
There are 4 hoops in our basement.  If he is down there, he shoots.
If he is outside, he shoots.
He loves going to his brother's games,  But if he can find a ball, he will sneak out of their games and go to the other gym, and if it is empty, he shoots. You get the picture. The boy loves basketball.

About a month ago, it was sign up time for 3rd grade boys basketball team.  I discussed it with Randy and with both of the older boys playing high school ball, we were busy enough.  While Ben shoots, dribbles, and plays defense pretty good, he does not get things like double dribbles, traveling, plays, fouls, the out of bound line or playing by the rules.  Would it be fair to the other kids to have him go out?  Would we have the strength to deal with one more practice and game schedule?  Having Ben on the team requires one of us to be involved on the team too.  We just weren't sure we were up for it.  So the deadline came and went and we let it.

I happened to be at school during the first 3rd grade practice and saw them running drills.  I had a touch of remorse.  Ben could do drills.  It would be great exercise for him.  We are always looking for ways for him to interact with his peers.  Maybe we should have signed him up?  But since the deadline had  passed, I let it go.

The next week at the high school game I ran into Coach Dan  (who is also their awesome baseball coach).  He asked if Ben would like to play on the basketball team.  I told him what Randy and I had discussed and that we just were not sure how he would do, or if we were up for it.  He said he needed a couple more guys so they would have 10 total and make it easier to scrimmage, and it would be fine if we just wanted to try it to see how Ben did.

So we went to practice.  The boys were shooting when we got there and Ben jumped right in. This might not be so bad, I thought.  But then it was time to stretch.  Ben would not participate.  He wanted to continue to shoot and play in the gym and wanted no part of the organized practice.  For the next 10 minutes he laid on the floor and cried.  I have to admit, I was actively trying to get him out to the car for that 10 minutes that seemed like an hour, and if I had been successful we would have let the door slam and would not try to go back.

Then something amazing happened.  They started to do drills.  Drills that were somewhat similar to the drills he used to do with Noah's team, Ben got up, and started to participate.  He started to do so well I went up to talk with some of the other Moms for a while.  Did he do perfect?  No.  But was it a solid start?  Yes.  He was doing something he knew.  Something he had already been doing for the last 4 years.

Each practice seemed to get a little bit better.  He seems to listen pretty good when Coach Dan and Don speak directly to him (not so much when they address the whole team). But he is learning to try new things.   I have seen him try to dribble under his leg (which is hilarious), try to dribble 2 balls to half court, and give up during a scrimmage and start doing the same warm-up stretches the high school does across the gym floor (also hilarious).   The best part of all is that he is having fun!

This weekend the Knights played their first official games.  They played one on Saturday and 3 on Sunday.  We did not think he would be able to do all 3 games on Sunday, but he did!  He played a few minutes in every game.  During the second game on Sunday, he actually got a rebound and took it all the way down the court and scored.  He was so proud and so were we.  Amazingly, I happened to be filming right then and caught it on video.  Here is his shot and a couple other clips of him in action.  It should not be hard to pick him out, but he is number 10 wearing white.



I talk inclusion all the time, but I admit, it is hard work.  Some days I am just not up to it.  But I am so thankful to people like Coach Dan who gave me the nudge I needed to make sure  Ben got to play this year.  Basketball is his favorite sport after all.  It is in his blood.

Happy Holidays

Our young disciple group recently got their first set of bells and this was their first performance. We were a little short on young disciples, so we had to get some help from some of the older members of the church.   Ben was so excited to play the bells with everyone else.   He did not play perfectly, but he did have a blast.   We are so blessed to be part of such a loving and accepting faith community. 

Love Can Build a Bridge

A few years ago, I sang this song as part of a duet at church.  For some reason the timing on the opening lyric was hard for me, so I bought the song, so I could hear how it was really supposed to go. 

Fast forward to now, and this song is still in my iTunes and is one of Ben's favorites to sing.  I love catching him singing when he does not know I am listening.  I had been trying to record  him for some time now, but when he would catch me he would usually stop singing.  This time he obviously knew I was filming him, he decided to sing along anyway.

This is actually great song for this time of year as we can all use some extra love and maybe a bridge build here or  there. 

Happy Holidays!  Enjoy!

It's Buddy Walk Time!

Ben's Brigade Team Page for the Omaha Buddy Walk®

       

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 

http://www.ds-stride.org/omahabuddywalk/profiles/team/133

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.  

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.  

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!

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!

Bible Fun

What do you do when you love Signing Time, and your church service reminds you of the Bible Fun Signing Video?  Well, you stand up, pretend you are Rachel Coleman and start teaching the whole Church ASL from the back.  As you will be able to hear, the pastor's sermon did not slow him down a bit.  We finally had to take him out that day, but not until I captured a couple of video clips. Ben sure does keep life interesting!  #Signingtimeinstructorskid

Spread the Word to END the Word Day

Today is Spread the Word to END the Word Day.  In 2008, Special Olympics launched the www.r-word.org website to combat the inappropriate use of the R-word.  

Many people think it is OK to use the word retard or retarded if they are not referring to an individual with a disability.  I admit, that before Ben came along, I said it about myself on occasion, when ever I did something stupid. Since I did not have a personal connection with anyone who had a disability, I did not realize how hurtful this word was.  

But the word does hurt.  It hurts a lot!  When you say the word in a derogatory way, it puts down people with disabilities, whether you are referring to them or not.   It says you don't want to be like them.  It makes them less.

Most people, when confronted (or educated), apologize right away and really try not say the word again.  But believe me, speaking up in person, is not an easy task.  There are times I have let it go because I did not think it would be worth the fight, and times that I turned on my Mama bear and took the lesson way to far.  It is much easier to sit behind my computer and type this than it is to confront someone face to face.  But I am committed to being an advocate for Ben, and because of that, I have to speak up.  

But there are some who when confronted, start talking about the right to free speech, about how every group wants certain words banned, and how we should not be so sensitive.   Do you have a right to say that word?  Sure.  You have every right to be a jerk and put down other people. People with disabilities are an easy target because they are less likely to defend themselves.  But individuals with disabilities have feelings, and are hurt by word as much if not more than everyone else. Families have feelings

If you are still confused.  Here is handy flow chart.  

There is an easy solution.  Don't be a jerk.  Don't say things that put others down.  Make them feel like more, not less. Be someone who helps people up. Be respectful.  Advocate for those with special needs when you hear someone say the word and ask them to stop.  Take the pledge http://www.r-word.org/  

Finally, if you still need convincing, this sheet from KC Down Syndrome Guild sums it up nicely. Click to make larger.