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. https://www.lumindfoundation.org/pages/golf/hayes-omaha-golf-outing-golfer-registration

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 morning. 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 noy 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 morning, 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. 

Monday, December 22, 2014

Santa Won't Be Able to Top This One

Saturday was the seventh grade year end basketball tournament.  Once a year we generally induldge 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 reps 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.