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. 

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.  

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.

Basketball Fun

This weekend big Brother's team played in their conference championship.  It was a very close high energy game, but the Knights pulled out the win.  Before the game Ben again had fun warming up with the team.  

Thank you to the Dreamer and Hawks families who made the big photo cut out heads of the varsity players from the photos I took for the Booster Club fundraiser .  Ben was so excited to get to hold John's head and cheer for him.  (Only in the pre-game since he does not have enough self control to not smack someone with it during the game)  Sorry for the blurry photos, but he was on the court and I was in the top row with just my phone.  

Ben loves to cheer on his Knights.  He loves it when the band plays and when the cheerleaders lead a crowd cheer during time-outs.  He always encourages those around him to stand up and cheer along.  The Knights are now 19-2 on the year with 2 regular season games left.  Looking forward to the last few games of the season to see how the team goes. 

Now He is "Official"

Last week at the basketball game in Milford, Ben went up to one of the referees all by himself,  shook his hand, and "told him a story".  While we were not exactly sure what Ben was trying to tell him, we explained to the ref that Ben likes to pretend he is a referee at games and at home and even has his own shirt. Just before the boys game, that same ref came up and asked Ben to come down to him. He gave Ben a little bag that had an official referee patch in it. Ben was excited but was bummed it wouldn't stick to his shirt like a sticker.  The ref told Randy that he would be in Murdock tonight for the varsity games so we laid out a plan for Ben to wear his shirt, with his new patch.

With the patch now on his shirt, Ben made his way down to the court to meet the referee again.  Ben was a bit more shy tonight, but did pose for a photo with his new referee friend.

The kids were excited to get a visit from Nitro.  Of course Ben had to hold his hand and get a hug.

Since it was the last regular season home game, it was also Parent's night so the boys were all lined up.   It was nice to get a photo of the varsity boys who used to play Small Fry Basketball for Ready Mix Concrete all together.

Ben finished the night by taking about 100 selfies on my phone.  Most of them look like this.  I should have know from all the giggling that he was up to something.  

When I figured out what he was doing,  we took a selfie together. 

It was a fun night of basketball!

Happy New Year

While I understand the New Year happened over 3 weeks ago, I am just finally getting around to making a blog post about it.  Unfortunately with all the other types of social media, the old blog, is among the last to get updated.  But I do want to continue to share information and news about Ben with all of our readers in 2016.  Thank you for sticking with us this long, and I hope to have more to share with you in the upcoming weeks and months!  But until then, we hope you are enjoying basketball season as much as we are, and 2016 too. 

Do You Know Where your Fundraising Dollars are Going?

Many families who have a loved one with a disability work hard to fund raise for local and national organizations.  We feel compelled to make life easier for those families who are starting a new journey, that for us, has been a normal course of life for many years, and think that by giving money to a non profit, that task will be accomplished.  But do we really know where that money is going?

It is fun to get caught up in the contest of it all.  Raising more money than team x, and earning incentives for fundraising can be exhilarating, but is the money raised really going to help our kids? 

While most groups do a good job with helping out families with a new diagnosis, once the kids get older, the support dwindles down to the planning of social events for kids, like a night out at the movies, an afternoon at a swimming pool, or a holiday party, or maybe a parent outing. While these events are fine and a necessary part of group networking, the amounts budgeted for this usually only account to somewhere between 10-20% of the budget.  So where is the rest of the money going? 

As family members and fundraisers, we not only have the right to know, what organizations are doing with the funds we raise, we have the responsibility to ask questions and hold the group leaders accountable for upholding the group mission. 

I have been on the inside of quite a few non profits, church and school groups as a board member, committee chair, and volunteer, and what I have seen has been truly eye opening.  Some fundraising companies that market to schools give our kids pennies on the dollar to market their products, while they record huge profits.  Instead of buying that $20 wrapping paper or chocolate (that you did not need in the first place), why not just donate the $20 straight to the school?  Other groups try hard, but just don't have the leadership necessary to take the group to the next level.   If you feel strongly: speak up, volunteer, offer advice, make suggestions, be heard.

So, as we head in to the end of the year, and the fundraising season, ask questions before you donate.  Do a bit of research before you fund raise.  What will this money be used for? If there is a program or service that you feel would benefit the group, let the board or committee know.  Don't just give and remain silent.  If you have been asking, and no one has been answering, it should be a huge red flag.  Make sure the group you choose to donate to is going to be a good steward for the money you work so hard to make.  You deserve to have a group that meets the needs of your family.  There are plenty of groups around that are doing it right and making a real difference for those that we love. 

If no one can answer your questions, or respond to your suggestions, it may just be time to find a new group to support.

To find out more about the group that Ben's Brigade is choosing to support this year, go to http://bensbrigade.weebly.com/

UPDATE:  Apparently some groups don't like when people encourage others to stand up for what is right and hold the group accountable to follow their mission statement.  We planned to walk with our local Down syndrome group to celebrate Ben, even though we were donating to a different group.  Unfortunately, our local DS group deleted our walk team and have not responded to any of my emails.  Any group that would exclude a child with Down syndrome from a walk that is supposed to be a celebration for them, is not a group that is being supportive to it's members.  The new board is making a clear statement.  They do not provide support for individuals with Down syndrome, their families, friends, etc.  They only provide support to those individuals with Down syndrome who's families don't rock the boat, don't ask too many questions, don't make suggestions to try to move the group to the next level.  

Santa Won't Be Able to Top This One

Saturday was the seventh grade year end basketball tournament.  Once a year we generally indulge Ben and let him where his referee jersey to a basketball tournament. Every game he pretends to be a referee and runs up and down in the bleachers using signs and "helping" them with calls. He hangs out close to where they generally take balls out on the sideline just hoping one of the refs will talk to him or maybe let him hold the ball. 

On Saturday we arrived a little late to the game, and had missed the first quarter. At halftime, I noticed that Ben had gone down to the referees all by himself to introduce himself and shake their hands. They thought it was so cute that he had on his referee uniform and were talking to him about it.  Soon I  heard one of them say, "hey Pal, you are missing something".  I thought "Dear Lord No!  Don't be reaching in your bag for a whistle"!  Sure enough he pulled out a brand new official referee whistle along with a lanyard and gave it to Ben. He was on cloud nine. You couldn't wipe the smile off his face.

Soon the game was about to restart and I was worried about how we were going to keep Ben from blowing the whistle during the rest of the game, or the other three games after that one.  I thought I would give him a chance and just told him not to blow it, to see what he would do. I was amazed at his impulse control. At first he did not blow it at all. Later, he would wait until the refs blew their whistle for an actual call and then he would very quietly, blow a tiny little whistle.  It was pretty cute. 

Even as cool as that whistle was, it was not as important to Ben as the boys on the team.  When one of the players got hurt, he quickly handed me the whistle and his skittles and rushed down to check on the player.  He sat with his arm around the boy, until he made sure everything was going to be okay.

Soon the game was over and Ben had gave me his whistle again so he should go shake hands with the rest of the players. He followed the team out of the gym and was holding hands with Noah. I told Noah that I needed to go to the restroom and that he needed to keep an eye on Ben. When I came out of the restroom there was a full-scale search going on as Noah did not pay attention to Ben. We finally found him sitting up on the stage of the other gym next to his favorite referee Mrs. Kuhlman.

Since we had time between games, Randy decided he needed to run to the bank, so he took Ben with him while I sat and watched the other Elmwood Murdock team play.  Just after halftime I looked down and noticed Ben was sitting next to the referee who had given him the whistle. I looked around for Randy and couldn't find him anywhere. I sent him a text and said, "Did you lose anyone?"  Sure enough a few minutes later Randy came running in the gym slightly frantic. The one thing we realized from this whole thing, is that if Ben does get lost at a basketball game, he will find the first referee and latch onto them, which is good.

But the excitement was not over for the day. There were so many junior high boys out for basketball this year, they split the b and c  teams into two even teams. Both teams won their brackets and played each other for the final.  The very nice referees realized that we were from the home team and devised a plan to let Ben help with the jump ball, and get to blow his whistle for real at the start of the game. At first Ben was a little confused, because he knows that when games start, he supposed to go sit down.  But the very nice referee held his hand and together they started the game. It was a very fun game and a great way to end the season. After a whole lot of smack talk amongst teammates, Noah's team did come out on top.

I am sure that Ben will be excited by Christmas. However, I don't think it will come anywhere close to the excitement on Saturday, when he got his first real whistle and was able to blow it in a real game.

NDSS Time Square Video

Once again a photo of Ben has been chosen to be shown on the big Sony Screen in the heart of Times Square in New York City as part of the video that kicks off the National Buddy Walk.  It will be show on September 20th at about 9:00 am central time.  We are both humbled and honored for a photo of Ben's to be chosen again this year.  There were over 2000 photos entered and only 200 were chosen. 

This photo was taken at one of Ben's t-ball games and shows the pure joy that he displays whenever he is doing something he loves. Sports of any kind will usually bring out this expression or one of pure determination.  Way to go Ben!

One Proud Little Acolyte

Once again it took someone else to notice that Ben was ready to do something that  his peers were doing.

Let me explain.

We recently got a new interim minister at our church.  Every Sunday for the last year or so, after the service, Ben would get the candle lighters and go up to pretend to light the candles.  We would go up with him and keep him from smacking someone in the head with it.  But we did not think he was ready to light candles on his own.

So one Sunday after church our minister said to me "I noticed that Ben is interested in lighting the candles.  Can we put him in the Acolyte rotation?"  I said "Pastor, you do realize that our last church burned down?  I don't think I am ready to be responsible should that happen again".  She laughed and said let's give it  a try.  So we planned to add him to the rotation and send someone up with him just in case things did not go as planned.

The next week, it just happened that there were no other kids in church.  Here is the result.  You decided for yourself  if he was successful or not.  One thing I know for sure is, he was one happy and proud little acolyte that day. It was a win in my book!

Signing Time's Best Sale of the Year!

 
Don't miss out on the Best Signing Time Sale of the Year.  The discount is good off EVERYTHING that even includes digital.  But hurry, the sale will only last 2 days!
I can not begin to say how much the Signing Time program has meant to our family.  It helps us daily to communicate with our 6 year old son, with Down syndrome.  It help teach him to sight read when he was only two.  And it is something that every family can use to quickly learn ASL signs that can have a huge impact on your children. 
Teaching sign language to babies, toddlers and school age children can help build vocabulary, reduce frustration, increase IQ, promote whole body learning and  boost working memory.  WIth all these benefits, why wouldn't you want to teach your child to sign?  With 40% off there is no better time to check out Signing Time for yourself. 

2014 NDSC Convention

 

YIKES!  I seriously thought I had 3 weeks left until the NDSC 2014 Convention, but as of today there are less than 2 weeks left to go.  How did time go so fast?  I realized it was getting close when I downloaded the super cool NDSC Convention app today and it told me there were 14 days until the event started.  Wow this app is really slick.  Already I know that ABC Signing Kids will be at booth 38 and the DSAF of NE will be right next door at booth 39 in Griffin Hall and there is even a handy map to tell me where to find those spots. Here is a list of all the Exhibitors 

So if you are going to Indy and you have a smart phone, I highly recommend you download this app.  Then look me up and say Hi at the Signing Time booth, or at the Signing Time Workshop "Jumpstart Your Child's Speech and Language Engine Using Sign Language in room 313 on Sunday July 13th from 10:30 to 12.   It is going to be a great trip!

See You in Indy!

OOPS!

I have boys and I live on a farm.  For those of you who live in the city, boys who live on farms where the yard is far away from the road and there are lots of outbuilding to hide what your are doing......pee outside.  They don't bother to come in from an exciting baseball game, or from working on a tractor to relieve themselves, they just step around a building and get the job done. 

About a week ago, we were out working with the goats and Ben was with us when he grabbed his pants and said. "Mom!  Potty!.  I knew we would never make it back to the house with dry pants, so I hauled him over to the barn, pulled down his pants, pointed to a spot on the wall and said pee.  Now, first of all, I have to say the boy has to do a little work on his aim, cause his pants still got plenty wet, but he was able to hit the "spot" at least a couple times.  After he was done, we went in and changed, then went back outside.  And I kind of forgot about it. 

Until tonight.

Once again we were back outside.  Ben was hitting golf balls, right next to the house when he said, "Mom! Potty! and he threw down his club, and took off trucking, all the way across the yard to the barn where he whipped down his pants and proceeded to pee on the exact same  spot on the wall.  Working memory issues?  Not today.  It cracks me up that he was right next to the house!  It would have have been way faster to just go in there!  For the record, he still needs to work on his aim.:(

Just one more in a long line of things that I wished I had never taught my boys!  Any guesses on how long it will take him to un-learn it? 

It's T-Ball Time!

Ben loves playing t-ball.  Just like a lot of the other kids he likes to hit the ball, field the ball and play in the dirt.  He has a good sense of how to run the bases and even has a pretty good arm.  His catching needs a little work, but all the kids could use some help in that department.  Enjoy some photos of Ben's first t-ball game. 

Heimlich Maneuver

So the Heimlich Maneuver really does work.  

Unfortunately I know from experience. 

Tonight we had Ben's favorite meal.  Sketti and BALLS!  With heavy emphasis on the balls.  In, fact he has almost gotten to the point where he will leave the noodles and just eat the meat balls. 

Tonight, as I was getting supper ready, I sat 3 meatballs on a plate at Ben's place at the table to cool.   He HATES anyone touching or cutting his food, so I left them whole.  I had my back turned while I was getting the rest of the plates ready, and the little stinker sneaked in and dug in to his favorite meal.  I realized this when I heard him start to choke.  Sure enough there were only two meatballs on his plate.  

He actually got up and started kind of running in place, all the time trying to breath and making choking sounds.  My first instinct was to pat him on the back, but then I remembered that can actually make things worse.  So I quickly grabbed him under the rib cage and lifted up.  Out popped the meatball on the first try.  I was both shocked and relieved that it popped out so easily.  

The whole thing took less than 5 seconds, and I was amazed at how calmly I was able to get to Ben, get my arms around him, and lift him up.  I only got a little shaky when I sat down and realized what had just happened.  

Needless to say the rest of his meatballs got cut up.

And he did throw a fit about it.

  

Too bad little man.  You scared Mom enough for one night. 

Here is a refresher, for anyone who might want one.

Ben's Birthday, World Down Syndrome Day and Ben's Brigade Fundraiser.

Today is Ben's 6th Birthday.  It has been a wonderful journey and we have been blessed to have Ben in our lives.  I will admit that it has not always been easy, (like today at the Doctors office with his annual blood draw), but it has always been more than worth it.  So enjoy this video that covers Ben's first 6 years, includes some facts about Down syndrome and an invitation to join us tomorrow,   March 21 and celebrate World Down Syndrome Day by wearing lots of socks, where ever you are.

And if you happen to be in South East Nebraska, join us on Saturday March 22,  for the 

2nd Annual Ben's Brigade Birthday Party and Fundraiser