Wednesday, January 30, 2013

Charlotte Kid Goes to World Special Olympics

World Winter Games - Special Olympics

Read Rory's story and be sure to watch the video on the right hand-side. It is a commercial for Special Olympics - truly remarkable.

Monday, January 28, 2013

Sled Hockey



Between illness, babies being born, ice storms that never truly hit, grandma and uncle visits, swim meets and life, it has been crazy around here. I know some of you have asked about Ben's school dance experience...I will get to all of it. Just need a moment to catch my breath.

Here's a photo of the USA Developmental Sled Hockey Team (they are hoping to get on the US Paralympic Sled Hockey Team). They lost against the Russian team on Saturday night. Great game!

Friday, January 18, 2013

Choosing to Dance

Let's dance, put on your red shoes and dance the blues...*

Ben's school is having a dance for 3rd-5th graders this afternoon. Rather than make the decision for him to attend, we posed the question and then gave him the choice on his NOVA Chat. The overwhelming response, 100% of the time, was YES. His Occupational Therapist asked the question a few different ways to be sure his answer was consistent. It was every time.




Ben's wonderful new community worker is attending the dance with him. Luckily, she is very excited to go and with her outgoing personality, Ben will have his dance card filled.


*Words are from David Bowie's Let's Dance, 1983



Wednesday, January 16, 2013

It Runs in the Family

In the last week, my husband lost his jacket and cell phone and Logan lost his winter coat. I have looked in lost and found at Logan's school, called lost and found at Ryan's school and I have grumbled and mumbled quite a bit over these missing items.

Today I went to the YMCA's lost and found, hoping to find Logan's jacket. As I complained to the person at the service desk about my family's great skill for losing things, I watched her take out items from the large bin. Something caught my eye. No, it could not be. "Uh, could I take a look at that gray jacket? I think that one is mine." Sure enough, my gray zip-up hoodie was in the lost and found bin.

As always, I am humbled...and glad to find my favorite jacket.

Wednesday, January 9, 2013

A Good Dose of Overwhelming


I have so much to write, but I think I have been afraid that if I do put it down, it will be real and perhaps too overwhelming for me to deal with right now.

It has been almost 2 months since Ben has started using the NOVA Chat 10, a communication device on an Android platform. Like an iPad, but different. The results we are seeing from Ben using the device have been incredible. He is making choices about his meals, activities and location. Having these options and ability to choose must be liberating for him. When we decided to order it for him, this independence was all I had in mind.

Then, a few weeks before Christmas, Ben did a curious thing: using his hands and feet, he put down his two foot plates on his wheelchair deliberately. From then on, I asked him to do the same thing and he would. This piece of communication resulting in an action started me thinking.

We added reading comprehension questions to the device. We read a children's board book and then asked Ben a question. On the device, there were 4 choices. When read the question and 4 choices, he had 100% accuracy.

We changed the books to longer children's books - Franklin Has a Sleepover, Berenstain Bears Get a Pup, The Wildest Bother - all questions answered at 100% accuracy.

Last night I added a math application to the device. In one activity, it asked which number was lower, 15 or 18. The numbers were in hot air balloons and moving up into the sky. It held Ben's attention, and he answered it correctly. I did it about 6 times more. All but one answer were correct.

Two different therapists, two different in-home staff, Ryan and myself have all seen the results individually. This is not a raving mother hoping her child knows the answer.

But I still doubt. It has been 9 years with assumptions. I still want to test, check and rethink.

But it has also been 9 years for Ben not being able to tell us.

It is a lot to think about, a lot to ponder emotionally and intellectually. Our next moves are cautious. We do not want to overwhelm Ben.

Enough for now. There will be more to come, of that I am sure.



Tuesday, January 8, 2013

DonorsChoose


This request is from Ben's Physical Education teacher. She also is responsible for all the Special Olympic activities Ben does throughout the year. If you are not familiar with DonorsChoose.org, check it out. It is a remarkable site.

Hi Friends,

I want to make sure my students have the materials they need to succeed. So I've created a classroom project request at DonorsChoose.org, an award-winning charity.

I'm asking for donations of any size to help my kids. For the next four days, any donation you make to my project will be doubled! If you know anyone who is passionate about education, please pass this along. Your donation will brighten my students' school year, and you'll get photos and thank yous from our class.

Here's my classroom request:

http://www.donorschoose.org/project/pads-and-pods/942518/

To have your donation matched dollar for dollar, enter the match code INSPIRE on the payment screen. This awesome match offer lasts through January 10.

My students and I greatly appreciate your support.
Brenda Huntley  NBCT, MEd.




Thursday, January 3, 2013

Braced for Day & Night: Part 2



Ben wears this brace on one of his legs almost every night. It was made by KMO - Knee Management Orthosis. Its purpose is to stretch Ben's hamstring muscles.

We wait until Ben is asleep before we put it on because it does limit his movement. Imagine your leg in a cast and you cannot bend at the knee - that's what it feels like for him. Combined with his new ankle foot orthotic braces, Ben is standing up straighter when he walks and his heels are striking the floor when he makes a step.

Ben manages to still get around with this brace on. On too many occasions, he has gotten out of bed, opened the door to his brothers' room and crawled up into bed with Logan, effectively waking up the entire household. This is all done with one leg in the brace.

If Ben senses that we may try to put it on him, he pulls his knees tightly into his body and it takes strength and emotional toughness to get that brace on him. We know it is doing him good, but we still feel bad when it happens. He had Christmas Eve and New Year's Eve off from the dreaded brace, and since he has pulled on it so much, it is actually "at the shop" getting a little work done, so he has more time off from it.