Saturday, September 19, 2015

Why are we fundraising for the LuMind RDS Foundation this year?

This is why. 50% of individuals with Down syndrome will develop Alzheimer's by the time they are 50. That is a scary statistic. 
Here is another. 
Children with Down syndrome can begin developing the pathology of Alzheimer's Disease as early as 
8 years old, including the formation of beta-amyloid plaques and neurofibrillary tangles. Researchers are working on a drug to help prevent the pathology of Alzheimer's from forming. 
Additional funding is needed to move this research forward. Please consider donating in honor of Ben's Brigade for Down Syndrome Advocacy or in honor of your own loved one with Down syndrome.
Click here to watch a video from report by Maria Shriver regarding the connection between Down syndrome and Alzheimer's Disease.  

Sunday, September 13, 2015

Ben's Brigade Fundraising

This year we will be making our own customized shirts for Ben's Brigade. Deadline to order is going to be September 15th. This logo will be on a white shirt. $12 for adults and $10 for children.  Let me know if you are interested in getting your very own Ben's Brigade t-shirt or click here to go to our fundraising website where you can  order your shirt on-line.

All proceeds from the sale of these shirts will go to the LuMind Foundation for Down Syndrome Research.  What will you do today to make life a little bit nicer place for those with Down syndrome?  Consider donating today!

Wednesday, August 26, 2015

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

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.  

Wednesday, August 19, 2015

Just one of the crowd

One of the awareness campaigns of the National Down Syndrome Congress is the More Alike than Different campaign.  These ads emphasize that individuals with Down syndrome are more like the general population, than they are different from them.  But even when you have a crowd of people who are all very similar, certain people stand out.  
Ben stands out for a few different reasons:
He has a great smile, 
He is either overly enthusiastic about what he is doing, or he is on the floor refusing to budge.  
He stands out when he uses sign language.  
He stands out because of his personality.  
He stands out when he cheers for any team that scores.
He stands out because of his looks.  
He stands out whenever he shares his awesome laugh.
He stands out when he moves to the beat of his own drum.  

 I think this last line is what this quote is all about.  Ben enjoys life.  He does not play to win.  He plays because it is fun.   Fun and laughter make this world a happy place to live. 

Recently I read a new quote that went something like this.  God created Down syndrome to offset the large amount of boring people in the world.  I don't remember where I saw it, but it is so true! Ben takes all the boring out of the most every day.  So what if he stands out, so long has he does it with style.  

October is Down syndrome awareness month.  
The new Ben's Brigade website is up and running.  Please check it out to donate or purchase Down syndrome awareness items.  This year all proceeds will go to the LuMind Foundation for Down syndrome research.  

Monday, August 10, 2015

Another County Fair in the Books

As a parent, I have tried to instill a love of the county fair in my boys.  Growing up, we attended the fair every year, showing cattle, and I would take many different 4-h projects, like sewing, cooking, photography, and child development.  I remember the excitement of rushing to the fair to see what ribbon each project got.  I remember being scared going into the ring leading a 1100 lb calf.  And most of all, I remember saving money all year to go on the rides at the midway.  The Tilt-a Whirl was my all time favorite.  This year was a slim year form my boys, since they are starting to get older and have less time for 4-H.  John entered just two photos, (after much nagging he did finally take a few steps out the back door to snap photos of some wild flowers) but did really well with them. 
 The photo above won Grand Champion Wild Flower.

 This photo won Reserve Champion in Senior Photography and will be going to the state fair.

Noah had quite a few good photos.  He did at least put a little work into his photography and took quite a few photos at Sunken Gardens in Lincoln. Unfortunately his photos did not really feature wild flowers,  However, there were two that really stood out and both will be going to the state fair
 This photo won Grand Champion Senior Photography (yes he beat his older brother).

I think the judge had a hard time deciding which photo she liked best because this photo had Grand Champion written on the corner of the entry tag and then it was crossed out.  This photo received a purple ribbon and is going to the state fair also.  

Earlier this year we got some lambs that were bottle fed.  Noah and cousin Rachael showed them.  The did not get last place.  So that was not bad for just starting out.  The lambs were very small compared to many of the lambs at the show, and are very tame, so they made good lambs for the petting zoo.
Noah was nice and let Rachel show the lamb who led better.

 Noah's lamb did very well too.

 He is all ready to do lambs again next year.  I don't blame him.  They are seriously cute!  We also need to send a huge thank you out to our neighbors the Coopers.  We could not have done this without your help and guidance.

Noah and Rachel also showed bunnies.  He got purples on his big bunnies and a litter of baby Tans all got blues (they were really too young to show).  

Finally it was time for the parade.  Noah was very concerned about attempting to play his trumpet with his new braces.  John was taking care of some State FBLA business and was not able to march in the parade, so I suggested maybe he ask if he could play a drum instead.  It was hard to find him, but he was able to play the base drum in the marching band.  I think that made his day!

Aunt Sharon was wise and had us line up all the cousins to get a photo this year.  Everyone is getting so big!

Ben had fun at the petting zoo, showing off his lambs.  
I think he might be old enough to try it next year.  

 We finished up the fun fair with some rides on the midway.  Ben had a blast.  Mom not so much.  Remember how I said I used to love the Tilt a Whirl?  Well not any more.  I went on with Noah to use up the last of our tickets, and it was horrible.  I kept pleading to the attendant with my eyes to stop the ride and I really think he kept it going longer to see if he could make the old lady throw up.  He got REALLY close.  But I held my cookies.  However, I will never go on that or most likely any ride ever again!

Tuesday, July 28, 2015

The Scenic Route

I can't agree with this statement more.  Since Ben was born, we have met amazing people, learned so much, and gone places we never would have gone if we had not had Ben.  The Down syndrome journey is not one I had planned, and we got at a much slower pace, but I sure do love my tour guide!

Friday, July 17, 2015

Down Syndrome Research

In my quest to find out more about the organizations who are leading the nation in Down syndrome research, I was excited to find out that one of the top groups will be the beneficiary of the funds raised from a golf tournament right here in Nebraska, next month. If any of you are golfers and want to give to a great cause, please check out the upcoming Hayes Mechanical Golf outing to benefit the LuMind Foundation for Down Syndrome Research. Currently, researchers have a better understanding about the connection between Down syndrome and Alzheimer's than ever before and they are in the process of developing a drug to prevent Alzheimer's in the general population. That same drug may be able to increase cognition in individuals with Down syndrome. This is an exciting time for Down syndrome research. Can you help out? Please share this link with all your golfer friends and any company that might like to sponsor a team.

Monday, July 13, 2015

Scientific Fact?

I not sure how scientific this fact really is, but it sure rings true with me.  I have had the honor of meeting so many awesome individuals at the NDSC convention over the last three years,  and the main thing they have in common, is an extra 21st chromosome. 
This year I got to have a booth next to Timothy from California.  Timothy knits his own scarves.  I know, because I saw him do it.  As a fellow yarn lover myself, I felt an instant connection with him.  We are hoping to see him and many other members of our Down syndrome family next year in Orlando!

Thursday, July 2, 2015

I Wouldn't Change a Thing

If there was a magic wand that could take away Ben's Down syndrome, (which there isn't) I don't think I would use it.  Would I like to make life easier for Ben?  You bet.  Would I like to take away all the people who will hurt him over his lifetime?  In a second.  But I don't want to take away that special something that makes Ben who he is. He is a silly, active, inquisitive, dancing, giggling, ornery little boy, who has made our family so much better by being exactly who he is.  I love him just the way he is. 

Monday, May 4, 2015

Dreams really do come true.

Many parents who receive a new diagnosis of Down syndrome go through a period of mourning. They are mourning the loss of the child they thought they were going to have. We were no different.

Even the doctors tried to paint a bleak picture. A picture of a child who might not even make it to term, might not speak, might not be able read, and might have severe intellectual disabilities.

After coming to terms with the diagnosis and doing our mourning, we started to build new hopes and new dreams for our young son. Those dreams included speaking, reading, walking, running, and playing with his peers, etc.  It didn't take long for Ben to exceed our expectations.

So now the new dreams are remarkably close to the original dreams we gave up on. For the last two years Ben has been playing T-ball with his typical classmates. This year those classmates moved up to coach pitch baseball. We were on the fence trying to decide if we should allow Ben to try to play with his classmates or play another year of t- ball. Looking back I don't know why even trying seemed so scary.  We signed him up for t-ball. 
A few weeks later we got a call from one of the coaches who wanted Ben on his team. He really felt strongly about keeping the 1st grade boys together on one team. 
We are now 4 or 5 practices into the season and the first scrimmage was Saturday. Here's a clip of Ben at bat. 

What do you think? Did we make the right decision? Does it matter that he got out? Or is the most important thing that he really had fun playing baseball?

I admit to feeling pretty bad about not advocating for Ben when I should have. It's took another parent to stand up and tell me yes Ben can do this and we will help him be successful. 

So to all the parents who have little ones or just received a new diagnosis, keep dreaming. You never know how much potential your child has until you let them try.