Thursday, May 29, 2014

Lace Up Son

My MP3 player started with Bieber and ended with the theme from Rocky. I was running a 5k race called, Lace Up Son, a play on former Carolina Panther's Steve Smith's words to Aqib Talib, "Ice Up Son", after a football game that left the New England Patriots on the losing side.

About two weeks before the race, I heard Steve Smith on the local radio show discussing the race and his foundation, the Steve Smith Family Foundation. He made a point to say that the race and events afterward were family oriented and that a portion of the proceeds would go to support Special Olympics. There was something about how he talked about the race and his vision for it that made me want to go.

At 6am on Memorial Day, the day of the 8:15am race in a town 30 minutes away, I was definitely thinking twice about what I had gotten us all into. The kids were snug in their beds, Ryan and I could have slept in late, instead, I dragged everyone to the car.

No regrets from any of us now- we met Steve Smith, ran and walked a good race and swam at the YMCA water park. Smith was on the course cheering on the runners and then at the finish line taking photos with anyone who approached him, and approachable he was.  He gave one group a short lesson on the best place to stand for a photo so that their faces would not be in shadow. He spoke to a 91 year old woman who had run the entire race. He connected with a veteran who was in a wheelchair and another man who ran on blades. Each conversation looked easy and comfortable.

We eased our way up to Steve Smith and asked for a photo with him. I explained to him that hearing his inteview on WBT radio talking about the Special Olympics support, motivated us to participate.  I told him we noticed how many special needs people participated in the race - kids and adults. Smith responded with a twinkle in his eye, "That was intentional, we want this race to eventually be 50/50." What a lofty and lovely goal.

Baltimore Ravens may just have a new fan.

Yes - I found us matching shirts.

That's Steve Smith on the right, just in case you were not sure.

We did it! I finished in 28:51; Ryan finished in 57 minutes with
Sean on his shoulders for some of the time while pushing Ben.

Warming up - because being carried on your
Dad's shoulders requires limber quads.

Wednesday, May 28, 2014

Rockin' the EOGs

Beginning in 3rd grade in NC, students take End Of Grade tests for math, reading and additional subjects in upper elementary. For Ben and other children with special needs, they take a test called the NC Extend 1. Ben was scheduled to take his over the next few days, depending on his cooperation and energy level.

Minutes ago, I received a call from Ben's teacher telling me that Ben "rocked the EOGs". She was able to get both reading and math sections completed with him. She saved the best for last: one portion of the test required Ben to read a section independently, then answer 3-4 questions. The proctor did not ever read the passage aloud. Ben answered all four questions correctly, each question had three choices. Unbelievable! We were uncertain about his reading skills, but this seems to prove that he is reading and comprehending.

Sample NC Extend 1 from 2013
NC Extend Information

Although they had the NOVA Chat ready to use for the testing, they did not have to use it. Ben responded well with the cards, making his choices with them. Another milestone for him - being able to use the cards without wanting to eat or throw them. I attribute this to the way in which NOVA Chat promotes communication, and Ben is transferring these skills to other areas.

I cannot mention EOGs without talking about Logan. He took his EOG tests for the first time this year and rather than being nervous, he was very excited for the tests. For weeks, he had been talking about making a "thinking cap" to wear during the test. I advised him that the rules probably prohibited something like that, even if it was a great idea.

On the morning of his first test, Logan was prepared.

Lucky stone from under his bed and a four leaf
clover found minutes before leaving for school.

Label reads: Brain Cell Activity Open

I say, "Whatever it takes!"

Tuesday, May 27, 2014

Trail Blazers

Ben was in the news tonight. Watch it here:

New Arrivals

Ordering new equipment for Ben had been a fairly easy process in the past - contact a medical supply salesman to do a fitting and then a few months later, the delivery was made. Something happened with our past sales person, and Ben was neglected for the past year.

For almost a year, Ben sat in a Convaid wheelchair that was way too small for him. Medicaid requires that you keep equipment for at least three years before ordering new, but had we known about this caveat - if the child grows quickly and cannot use it safely, then a doctor's letter will help get the equipment ordered before the three years, we would have pursued it. Ben's former Convaid chair was a 14" chair and Ben's hips were 14". Clearly, he was too large. His feet touched the ground, and he could almost stand up with it.

The past salesman's family-run company was bought out by a large corporation with strict policies and goals. It is possible that this was the reason for the salesman's neglect - his former company was going under.

The new company has a 90 day turn around from initial evaluation to date of delivery. Since taking over the company in December, they have delivered twice to us staying within the 90 day window.

The other piece of equipment that Ben needed was a Rifton High-Low Activity Chair. This arrived a few weeks ago and I think it will change a lot of things for Ben - from eating in a proper seat to doing therapy in the correct position.

My Learning Curve:

1. Follow-up with medical supply salespeople. If you are not getting the response you need, ask the hard questions and make a change if needed. There are many companies out there that want your business. I was loyal to our salesman and in the end, it cost Ben's safety, comfort and progress.

2. Providing the right equipment can make a difference for your child and can help with more productive therapy sessions. Be sure to ask therapists what equipment would make things easier for learning and development. We should have had an activity chair for Ben for the past five or six years.

3. Insurance companies and Medicaid have rules so that people cannot take advantage of a situation, but if you think you have an extenuating circumstance, ask if that rule may be bent. Ben sat in a chair that was too small and unsafe for him. Medicaid would have approved a new chair on the basis of his growth.

Monday, May 26, 2014


Mr. Terry, the kids' Sunday School teacher and I drove to Landsford Canal State Park in South Carolina. It is one of my most favorite parks, and it is known for its Spider Lilies and Canal System. Although I knew that Mr. Terry was a wonderful photographer of people, I did not realize that his skills expanded to wildlife. I will take credit for spotting some of it. Here are a few of the shots he took while we were there:

Sunday, May 25, 2014 Expert's Choice

In 2011, eSpeciallyBen won the Reader's Choice Award for Favorite Special-Needs Parenting Blog. It was a great honor and a lot of fun. This year, took a different route and decided to ask past award winners to share their favorite blogs, books and resources. 

Since we are always looking for something new that might work for our own family, this was a great idea. Take a look at these sites:

Saturday, May 24, 2014

Summer Safety

This was sent to me from Shriner Hospitals for Children and I thought it was a good reminder for us all:

Summer is a time for playground fun, camping, swimming, and other outdoor activities. 
But unfortunately, it’s also a time when the number of accidents involving children spike. Did you know that 40 percent of all injury-related emergency room visits occur between May and August?
The good news is that we can keep our children safer by educating them and ourselves on how to avoid accidents and injuries.

Please read and forward these Top Ten Tips for Summer Safety to anyone caring for kids!
  1. Teach children to buckle up every time they get into a car, regardless of the length of the car ride.
  2. Remind kids never to play with matches, gasoline, lighter fluid, or lighters.
  3. Do not leave children unattended near grills, campfires, fire pits, or bonfires.
  4. To ensure a safe celebration, leave fireworks to the professionals.
  5. When participating in any sport, use appropriate and properly fitting safety equipment. Helmets and goggles can greatly reduce the risk of head and eye injuries.
  6. Show children how to use sports equipment properly.
  7. Teach children to never go near or in the water without an adult present.
  8. Give children your undivided attention when they are swimming or near any body of water.
  9. Have your children wear a properly fitting life jacket while on a boat or around an open body of water.
  10. Teach children to never play on or around a lawn mower, even when it is not in use.
When accidents happen, Shriners Hospitals for Children® is there to help get kids back on track, providing innovative pediatric specialty care, world-class research, and outstanding medical education.
For more summer safety tips, visit ShrinersHospitalsforChildren.
Gratefully yours,
John Cinotto
John A. Cinotto
Chairman of the Board
Shriners Hospitals for Children®

Wednesday, May 14, 2014

Ben Sauer

A few months ago, I requested prayers for another boy named Ben, and I recommended his mother's blog, Prayers for Ben Sauer. Ben's mom, Mindy, shared the pain and anguish of finding out about their son's inoperable brain tumor and the family's journey as they prepare for the inevitable. Mindy's strength, honesty and willingness to be truthful during an incredibly painful time is astonishing. The outpouring of love from her family, friends and hundreds of strangers is visible in the fund raising benefit, prayers and comments for support.

It brings me much sadness to share that Ben passed away yesterday.

My thoughts and prayers are with his family.

Wednesday, May 7, 2014

Happy Spring!

Playtime after school at the local park

Jugglers spun their pins around Ben's head, at Logan's request.
It is actually a thing - standing in between jugglers while they throw their pins back and forth past your head. Logan and Sean got the chance last weekend to participate. Immediately afterward, Logan ran over to me and asked if Ben could do it too. My first reaction was, "H*%#! No!" but then I saw how much Logan wanted Ben to experience it, and I saw a way to do it more safely. The jugglers thought I was a lunatic, but they agreed to throw the pins over Ben's head rather than to the side of him. If he stuck his hand out and hit a pin, he could get hurt. The jugglers were relieved when it was over and Logan beamed, asking Ben if he loved it. I think Ben was glad to have made his brother happy.

International Festival with dancing Chinese Dragons

Friday, May 2, 2014

Society of the Traveling Chair

Polar Express in Bryson City, NC

On Wednesday, an activity chair was delivered to our home. It had been a year long process, and we were excited to receive it. The technician, Mike, who delivered the equipment was one of those people you connect with immediately. He was friendly and informative, and he was good at his job. I know how to move that activity chair in every way possible because of Mike's lesson, and that was no small feat. It was obvious he liked his job and the group of clients he served.

At home in Charlotte

After he gave us a thorough lesson on how to use the activity chair, I asked him some questions about the Convaid Stroller he delivered to Ben at school in early April. I was not there for that delivery so I did not know all the features. I mentioned that I had Ben's old Convaid Convertible Chair and that I had exhausted my resources to find a home for it. With its broken axle, no one could or would take it. In all other respects, the chair was in great condition. We had new parts exchanged for some of the old just a few months prior to it breaking. It felt weird to put it in the garbage, so it had been sitting in our attic waiting for just this type of connection.

Watching a show at Founder's Hall in Charlotte

Instantly, Mike had our solution. He volunteers with Friends of Disabled Latin Americans, a faith based organization in South Carolina that helps get equipment to people in need. A group of retired engineers, welders, technicians and other interested folks get broken medical equipment, fix them with spare parts and then ship them to people in Latin America.

At our favorite restaurant

I am happy to know that Ben's chair will find a good home. That chair has been up and down the east coast from New York to Disney World, from the beaches to the mountains, and from school and back countless times. It has been on trains, planes and boats. Ben has clocked many miles walking around our neighborhood to and from the YMCA, Smelly Cat and the park.
It has served Ben and our family well. We have many good memories of Ben in that chair and now another child will be able to build some new ones in it.