eSpecially Ben

Larry Sprinkle is a local celebrity in Charlotte, North Carolina. He is the long time weatherman for NBC Charlotte Today. He also supports several organizations like Special Olympics, making him a popular man in this city. Mr. Sprinkle has been announcing for the Special Olympics Opening Ceremonies for many, many years. He does not let up on his enthusiasm on any of the over 100 schools. Ever. It is genuine and heartfelt. He does a truly amazing job of making each athlete feel special as they parade past the cheering crowds. After the opening ceremonies, I was heading to our car with my kids and friend, Tracy. Tracy noticed Larry Sprinkle walking by himself across the parking lot. I instantly said, "I want a photo with him." Tracy, who is never in need of extra prompting for spontaneity, told me he would take the photo. We sprinted across the lot and caught up with Mr. Sprinkle. Without a care in the world or even a "who is this crazy lady and her friend" loo

UPDATE: Our URAA team is the #2 Fundraiser in North Carolina! Help us be #1 -  Ben's Page Who thought a picture of a map would bring chills and excitement? We just received our team's route for the Unified Relay Across America for Special Olympics. We will walk, jog, run or roll this 1/2 mile segment with our teammates. I hope there will be a crowd cheering us on - we are close to our own neighborhood (hint, hint). If you have not had a chance to donate, Ben is now an official member of the team and you can donate directly in his honor:  Ben's Page .

The media interviewing Special Olympics' staff asked why it is important for the community to support the athletes. In a three minute interview, it is hard to give the full answer. The quick reason is to show support to the athletes who have been working hard to participate and then compete in an event. The longer answer to this question, according to me, is to raise awareness in the community about a group of people who get left out, but who desperately want to be a part of something. They want to be included, noticed, liked, asked to join, befriended and accepted. "They" are no different than you or I. Filling the stands at the opening ceremonies with people who may be new to the Special Olympics organization and the population they serve may help people with intellectual disabilities be seen with athletic abilities, leadership qualities and communication skills. One friend took her two boys out of school to attend the opening ceremonies. The boys already asked

Just last week, we received a letter from the Social Security Administration letting us know that we proved our case, and we do not have to pay back Ben's past Social Security Income. This was incredible news and lifted a huge amount of stress off of us. It all started over 18 months ago when we received a letter cancelling Ben's SSI payments. Here is what I learned along the way and if one person learns from our mistakes and is able to avoid some of the frustration we faced, I will be pleased. I did not add any specifics because they may change or be different for your case. * Know the requirements  - SSA has very specific requirements about what makes a person qualify for Supplemental Security Income. It may all be found online. Know what these requirements are, determine if you meet them and be able to backup everything that proves that you qualify. Not knowing will only bite you in the butt later. Lawyering Up - If you want an attorney to help you resolve a case on a

*This SSI issue has been going on for some time. It is now resolved. I wrote this in February, but waited to post until resolution was final. There was no line to get into the Social Security Administration office, which was unusual. The security guards, the same ones I have seen each time I have paid a visit, do everything but frisk us. Luckily, my weapons and belt were at home. The government issued walls were gray, seats for 100 people were tucked in tightly. The saying, snug as a bug, came to mind, with bug bolded and underlined. Windows around the perimeter served as some of the meeting space for Social Security workers and their clients. Windows had thick plexiglass strips about every five inches. I imagined it kept someone from jumping through and throttling the staff. When the case manager called our name, we followed through the door into the bowels of SSA. She did not speak, but expected us to follow. She was an older woman, whose demeanor seemed unpleasant. She showed us

Yesterday, I took Ben to the YMCA, and we watched men play a lively game of basketball. Later, in the lobby, Ben's strap on his wheelchair broke. I had to take him out of the chair and enlist help to fix it. In the minute it took me to find someone, Ben crawled back into the gym to watch the game. Ben was intense at this point, watching the game and yelling when they were about to score. He started sliding his little behind toward the court.  He was trying to get in the game. More than anything, he wanted the ball. This was a serious pickup game, and Ben did not even get a nod. It was nothing against Ben, these men only had eyes for the basket. At the same time, two or three boys about Ben's age started playing on the court when the men's game took them to the other end. Ben was doing his best to get someone's attention - if the large men wouldn't share the ball, perhaps one of these boys would. I was ready to pay cash for someone to throw the ball to Be

Ben with his school PT, Vanessa. Walking to the start line. Face of an athlete - photograph by brother Sean. Justin & Daniel, two buddies helping Ben for the day. Ben received two gold medals for 25m and 10m assisted walk. As per his usual response, he pulled off the medals faster than you can say, "Gold Medalist."

Photos for now...too tired to write. An awesome experience, again. Thank you to the tireless photographer. He caught all the right moments. WSOCTV Fox 46 - Good Day Charlotte Charlotte Parent Charlotte Observer Macaroni Kid WBTV WCNC

"If you could give one superpower to someone else in your family, what would it be and why?" This was the question texted to me in early April. A few weeks earlier, I joined a free service that sends a daily text with a question. I was apprehensive about this question because I was not sure what Logan and Sean would say about superpowers and Ben.  Within seconds of being asked the question, Logan and Sean chose Ben to receive the superpowers. Logan thought Ben would be best served with mind reading abilities so he would know what everyone was thinking.  Sean thought the ability to fix or build anything should be Ben's superpower because he loves Bob the Builder so much.  I had braced myself for their answers, assuming they would give Ben powers to change him into a typical kid. But they did not - they saw something else that I did not. Leave it to them to be far more perceptive and creative than me.  My friend and running partner, Ailen Arreaza, works for

With just one week until Special Olympics Mecklenburg County Opening Ceremonies, the local media is covering the story. Watch one of our athletes and the director of Special Olympics Mecklenburg County talk about the upcoming games: Sunday, April 12, 2015 - FOX 46 Good Day Charlotte

Find out more about the organization coordinating the accessible bathroom being built for Ben: Rebuilding Together of Greater Charlotte * Rebuilding Together is a national organization:  The Rebuilding Together network includes affiliates across 41 states and the District of Columbia. Rebuilding Together’s local affiliates and nearly 100,000 volunteers complete about 10,000 rebuild projects each year. Rebuilding Together served 570,000 people in 2013, putting $86 million of project value back in communities. Rebuilding Together volunteers completed more than 980,000 hours of service in 2013. (Taken from the website .)

We received word today that the plan for the bathroom was approved and a permit was issued. And, literally, as I read the email, the foundation contractor pulled up with equipment and workers.   Missed out on the Bathroom Build? Check out these posts: Ben's Bathroom Knights of the Square Table Demolition Done Right

Sean, Ben's youngest brother, helps him steer his new bike. Photography: Joey Haynes

This is our first media coverage for the 2015 Special Olympics Mecklenburg County Spring Games. Our neighbor and friend works for the local station, WSOCTV and was able to list it in the community events: WSOCTV

2013 - 15 spectators clapped. 2014 - A wild audience of 400 cheered. 2015 - ?

Before Rebuilding Together Charlotte's Board Members demolished the deck in less than three hours.  Ben watched as everyone worked. It was like having his very own Bob the Builder episode filmed live.  Logan and Sean helped out. They were both feeling sad about saying goodbye to the deck. The past president of Rebuilding Together reeled them into the work and made them feel a part of the project.  After

The container has been dropped.  Demolition starts Sunday.  I can hardly believe it.

Sirs Tom , Mike , Mark , Rodney, Dan , Eddie , Wyatt , Matthew and Brian are all at the top of their field in construction, designing, remodeling and building in the Charlotte and surrounding areas. Early one morning last week, they put aside their own busy lives to discuss a timeline for building an accessible bathroom for Ben. In one hour, they made several decisions: They discussed foundation, dumpster and sub-contractor issues. They volunteered for coordinating the project, framing the structure and donating supplies. Finally,  they chose a start date - March 15, 2015 . WooHOO! A few of these men know our family because Ryan was in construction for a number of years and worked directly with them. Most of them do not know us at all, and when the National Association of Remodeler's Industry of Greater Charlotte (NARI) introduced the idea of building an accessible bathroom for a family in need, they volunteered for the project. There was no arm twisting - they wanted

In December, the ABLE Act was passed. It allows for families to save up to $100,000 in a special account that will not affect Social Security (Supplemental Security Income) benefits. These accounts will take about a year to get up and running. Each state is responsible for setting up their own program. Read these articles for more detailed information: Autism Speaks - 10 Things to Know about ABLE Account Saving for College - The ABLE Act and What it Means Investment News: Meet the ABLE Account NC Legislation

When your kid with special needs does something so unexpected, it makes you remember that the diagnosis delayed development  could mean waiting for skills to emerge, interests to blossom and age appropriate behavior to advance. Even as parents, we tend to forget that our child's brain may develop at a different rate possibly exhibiting growth when least expected. When it does happen, it hits you right in the face, but in a good way. This morning, we were all hanging in our playroom. We were enjoying the space after decluttering the room and donating bags of toys to the local thrift store. Ben was with us and he reached up to a bin full of balls and chose a junior size football, one that we use all the time outside. He took the ball and handed it to Sean. Under my breath, trying not to squeal with excitement, I told Sean to play ball with Ben. Logan and Sean did not understand the significance of this moment. Joining us in the playroom, locating a ball, choosing a ball, getting

Read my post as Guest Blogger on Charlotte Parent's website : Spy Games

We met Mason and his family a few years ago at the orthotics office. We usually meet the best people in waiting rooms! We stayed in touch through the   eSpeciallyBen Facebook Page , and when Ben was ready for a larger tricycle, Mason was a perfect fit for Ben's old one. Mason came over at Christmas time to try it out and since it was a cold day, we stayed inside and he rode it around our house. It was obvious that he loved the bike. He had been quiet at first, but once he was on the bike, it was hard to get him off. He made motor sounds while he was "whizzing" around the house. I was sad to see the bike go because Ben had a lot of good times on it, but knowing that Mason will enjoy his time with the bike made it easier to say good bye. Mason's parents sent these photos of him riding around his own neighborhood. Go Mason Go!

Every time Ben goes to the pool for physical therapy, I am sure he will hit his mouth and rechip his tooth while getting out or while crawling on all fours on the deck. After almost two years, nothing has happened. In fact, at the dentist last week, the doctor and I congratulated ourselves for making it almost two years. Ben chipped his tooth on the school playground about two years ago. We had it repaired and it has lasted without any care to what Ben munches on. Yesterday the weather was cold and soon to be icy so we changed the physical therapy session from the pool to our home. About 15 minutes into the session, the PT yelled in a panicked voice, "Ben chipped his tooth." Sure enough, Ben chipped the same tooth that had been repaired. The fake chip came off when he hit his desk while making a transfer from his desk seat to a regular chair. When I called the dentist to see if I needed to keep the broken bit, he said we had jinxed our luck the other day by talking abou

Here's my post as a Guest Blogger on the Charlotte Parent website: What St. Valentine Really Had in Mind

Rebuilding Together Charlotte and NARI (National Association of the Remodeling Industry) are partnering to build Ben the accessible bathroom he needs. We are very excited to see this project finally come to fruition, and we feel fortunate that these two organizations are coordinating their efforts to make it happen. This is a big project on an old house (99 years) and requires special care, expert advice and quality workmanship. These photos are from last week's NARI meeting. A table was setup for contractors and other companies to sign-up to help with specific aspects of the bathroom construction. By the end of the evening, a variety of companies volunteered to donate labor and materials. It is a good thing I was not there to see people signing up to help with Ben's Bathroom. Just seeing the photo above sent to me after the event, brought tears to my eyes.

Below is a link to an article I wrote for an alternative weekly paper published in our city. I worked on it for less than a week, which was breakneck speed considering how information changed with each meeting and interview I attended to gather information. Drafts of the article changed daily, with the focus and direction moving as the story evolved. Through the process, my brain and heart evolved as well. I moved from, "What's the big deal to walk a few extra steps?" to "I think I might get it now." For a week, my brain was cluttered, trying to sort through the information and make sense of all of it. Read this and tell me what you think: The Fight for Equal Access

2014 Mecklenburg County Special Olympics. This is taken directly from the Special Olympics Page : "Special Olympics' Unified Relay Across America is a historic event with three simultaneous torch runs, held from East Coast to West Coast, to kickoff the Special Olympic's World Games in July/August 2015 in Los Angeles, CA. Unified Relay Across America will begin May 26th and end on July 10th, 2015.  The three legs will be: The Northern Route (in red):      Augusta, Maine to Los Angeles, CA The Cetral Route (in white):        Washington, DC to Los Angeles, CA The Southern Route (in blue):     Miami, FL to Los Angeles, CA Unified Relay is a team based event.  Teams of 1 to 15 people will  have the opportunity  to walk, jog, run, or roll ( rollerblade , skateboard, wheelchair) a 1/2 mile segment or cycle a 5 mile segment.  Your team will be carrying the Flame of Hope, brought all the way to the United States from Athens, Greece.  The Flame of Hope is a beacon t

I will be a regular guest blogger on the Charlotte Parent Website. This is my debut post: Declaring 2015 to be the Year of the "No"

Some very special fans for Ben. The 2015 Opening Ceremonies for  Mecklenburg County Special Olympics is  Monday, April 20, 2015 10am-Noon Bojangles Coliseum Free Admission, Free Parking Open to the Public, All are Welcome Homer from the Charlotte Knights Baseball Team leads the Color Guard. 2014 Fans from St. Luke's Lutheran Church Larry Sprinkle, a local TV celebrity, and Sir Purr of the Carolina Panthers cheer on the athletes.

As I sat with Ben in his bedroom the other night, my mind wandered. I recently cleaned up the shelves in our library and all the baby books were taken down and dusted. Each son has their own photo album, baby book and keepsake box. I thought about Ben's books and how being the first child, every single moment was honored with a snapshot. My meandering mind went to the dark place I keep hidden in the deepest recesses of my mind. Ryan and I will not be around for Ben one day. It saddens and scares me. I know he has Logan and Sean, but it will be different. As parents, we have a level of love and understanding of Ben that no one can come close to emulating. With us gone, Ben would be in the care of other people - strangers - people we do not know, people we have not vetted. My one solace was knowing how Ben's albums would show these strangers that he came from a loving family who cared about him. They would see a sweet boy smiling, surrounded by family and friends. I rati