eSpecially Ben

Another one of Ben's famous art projects done with his hands. Need some art inspiration for your household? Check out 5 Minutes for Special Needs every Monday . And if you have a little artist in your home, link up and share with others.

Hi,   I'd like to introduce you to Ben and tell you a few things about him.  He's a very happy child, nonverbal but makes lots of sounds to express his likes and dislikes.  We are continuously working on weight baring and strengthening his upper body.   A typical day for us is to wake up around 6am in order for Ben to ride the van to school.  I pick him up close to 2pm everyday, unless he has therapy, because he doesn't have much energy after 12:30pm.  I found that if I push his body too much, it weakens his immune system and he becomes sick.  Common sense really helps during times like these.   Once he's home, I keep him out of his wheelchair as much as possible and we play.  It's really physical therapy, but he thinks it's play time.  Good.  If he's too sick to lay on the floor because he has lots of drainage issues, I'll take him for a ride in the car.  He loves 18 wheelers, singing, people who talk loud, and going through the drive thru. 

Denise  Luke is a sweet three year old with CHARGE syndrome. He has had a rough start in life with multiple surgeries, hearing loss and developmental delays. Despite all his challenges, he almost always has a smile on his face and a deep laugh which is very contagious. As I mentioned in my first post, Luke has facial weakness on the right side of his face which makes his smile lopsided. About one year ago, our family traveled to Houston and Luke underwent a 10 hour procedure to graft his masseter (chewing) nerve to his weakened facial nerve. After waiting almost a year for the graft to grow Luke can now make a full smile when he bites down and clenches his teeth. It is sometimes hard to see the success of the surgery since Luke cannot understand what he needs to do to activate his new smile. We still see the same lopsided smile each day. On the other hand, when Luke is able to make the correct facial movements to evoke his new full smile it is extremely exciting for us to watc

Last month you were introduced to nine women who have remarkable stories to tell about raising a child or children with special needs. Although I know most of these women well, I learned more about their struggles and triumphs through their words. Comments posted on this site, Facebook and ones I have received privately have been positive. One writer shared that these are stories she had wanted to write, but did not have the forum. In other ways, connections have been made between families and resource information has been shared. I am encouraged that this series is bringing readers and writers together to connect, share and possibly inspire one another. This month each woman will write about their child or children with special needs - likes, dislikes, joys, difficulties...really anything they see as important to help you better understand their child. And if you missed the start of the series...catch-up here.

I am sure I know who was happiest getting their photo taken with these two world champion swimmers - his smile is hiding behind Ben. The YMCA offers a program every spring break called YSplash, a free national program to help teach children to swim . Our Y's aquatic coordinator was able to get Josh Schneider and Nick Thoman to begin the program, sign autographs and be available for intense questions from inquisitive dads. This was Ben's first year participating in this program. Ben had one staff person dedicated to him while he was in the water. It was a tough week because of seizure activity, but I still think Ben had some fun. Check out when the YSplash is scheduled in your area.

A local private high school has been hosting the Mecklenburg County Special Olympics for many years. The students get the day off from classes to volunteer as a buddy to one of the athletes. Ben was lucky again this year and had two students with him for the day. We watched the motorized wheelchair race. And this foot race. Smiles and cheers for everyone that day. Next year when Ben is eight, he will be able to compete in one of the sports. I look forward to this!

These gifts are from Ben. Need some art inspiration for your household?  Check out 5 Minutes for Special Needs every Monday .  And if you have a little artist in your home, link up and share with others.