Sunday, October 26, 2014

Kenny & Kevin

This was a post I saw on Facebook - worthy of sharing here. I am also including links to the Special Olympics Unified Sports Program, a recent program that is gaining traction all over the world.




*We are about six months away from our local Special Olympics Opening Ceremonies. 

Friday, October 24, 2014

Thank you, Angel

In the course of working on purchasing new equipment for Ben, I made contact with someone who developed a list of funding sources for families. She would prefer not to be named - we will just call her Angel. Angel did this on her own, to help the families who do not have a way to pay for the equipment their children desperately need.

If you know of others we can include on this list, please add in the comments section or email me directly. The web addresses and information have been checked as of today, October 24, 2014.









Angels in Need
Davidson, North Carolina
Phone: 704-607-5118
Coverage: Local & International

Angels in Need is a 100% volunteer, 501(c)(3) non-profit public charity based in Davidson, North Carolina. It is our mission to serve children with special needs and their families both locally and abroad. Our goal is to enrich the lives of these children and families by supporting already existing programs and organizations devoted to our cause as well as aiding in the development, implementation and financial support of programs where they are non-existent, all in an attempt to provide the children with opportunity and a sense of community in which to blossom. Our target populations include: exceptional children and their families in the Lake Norman area of North Carolina (Davidson, Cornelius, Huntersville and Mooresville, NC) abandoned, orphaned, poverty-stricken and disabled children abroad (Romania and Republic of Georgia) Angels in Need, Inc. operates strictly, 100% on a volunteer basis. There are no salaries involved and there is no facility overhead.

Assistance League of Charlotte
Charlotte, North Carolina 
Phone: 704-525-5228
Coverage: Local & National (www.assistanceleague.org)

Assistance League of Charlotte is a nonprofit volunteer organization dedicated to improving the lives of children and families through community-based philanthropic programs.

In 2008-2009, 161 members generated 32,054 hours of community service to local children, and 513 non-members contributed 13,897 hours. Funds raised are returned to the community through five philanthropic programs: Operation Check Hunger; Operation School Bell®; Mecklenburg County Teen Court; Assistance League of Charlotte Scholarship Fund and Assistance League Outreach.
Assistance League of Charlotte was founded in 1992 and is the 93rd chapter of National Assistance League®.

Bee Mighty
Charlotte, North Carolina
Phone: 704-384-7894
Email: Candace@beemighty.org

Bee Mighty provides funding for medical therapy and equipment to Neonatal Intensive Care Unit (NICU) graduates. Bee Mighty was established so that families can focus on each other and concentrate on the development of their child without the added stress of financial ruin. The Bee Mighty Fund is managed by The Novant Health Foundation, a non-profit 501(c)3. 

Kyle Busch Foundation Charity
Mooresville, North Carolina
Phone: 704-662-0000 ext 110
Coverage: National

The Kyle Busch Foundation is dedicated to providing essential tools for less fortunate children throughout the country. KBF will concentrate its efforts on assisting organizations in fostering a safe environment for children to live, learn and challenge themselves as well as seeing that day to day needs are met.

In August of 2006, Kyle Busch was invited to visit a children's home near Grand Rapids Michigan. St. John's home provides housing and structure to children ages 6-18 that have been taken out of their previous living situation for various reasons.

Kyle accepted the opportunity to meet and spend some time with the children living at St. John's, a decision that would forever change him. His experience provided him with valuable insight into how these extraordinary kids are working to overcome the challenges in their everyday lives. He realized the things most people take for granted are the very things that these children need; a safe home where they encouraged to learn and taught the skills to achieve their dreams.

Shortly after his visit, Kyle made the decision to start the Kyle Busch Foundation to provide assistance to organizations like St. John's and the children who live there.

There are children's homes throughout the country just like St. John's, most of which are in need of assistance. With your help, the Kyle Busch Foundation can help make a difference in the lives of these children.
 
RHA Howell Care Centers Charity
Durham, North Carolina
Phone: 800-868-9011, 919-803-2960
Coverage: National

RHA Howell's mission is to open the world for people with disabilities and, in turn, enriching the lives of everyone they touch.

RHA Howell has been helping people with disabilities and special needs, and their families, make choices to live more independently for more than 35 years. Integrity, high standards for quality, hard work are at the core of every RHA Howell disability assistance program.

Today, RHA Howell, Inc., carries on the Howell Care Centers tradition. Proven leaders in caring for people, RHA Howell, Inc. is a pioneering force in the field of human services, particularly supporting infants and children.

Ride 4 Kidz Charity
Asheville, North Carolina
Phone: 800-253-6530
Coverage: National

The Ride for Kids® program supports the efforts of the Pediatric Brain Tumor Foundation® (PBTF) to find the cause of and cure for childhood brain tumors. Come join thousands of your motorcyclist friends at events around the country to make a difference in children's lives!

The PBTF is honored to be the official charity of the Honda Riders Club of America (HRCA), which has been the presenting sponsor of Ride for Kids® since 1991. Thanks to the significant support of American Honda Motor Company's motorcycle division, Honda dealers and other motorcycle industry companies, the program has raised millions of dollars for pediatric brain tumor research.

Our exclusive national insurance sponsor is GEICO. This partnership brings together the nation's leading motorcycle charity and one of the country's largest auto insurance companies to help work toward a cure for children's brain tumors.

Speedway Children's Charities Charity
Concord, North Carolina
Phone: 800-236-2354
Coverage: Local

The mission of Speedway Children's Charities remains true to the ideals it was founded upon in 1982: To care for children in educational, financial, social and medical need in order to help them lead productive lives.

SCC is a non-profit 501(c)(3) organization and provides funding for hundreds of non-profit organizations throughout the nation that meet the direct needs of children. Our vision is that every child has the same opportunities no matter what obstacle they are facing.

Variety The Children’s Charity
Coverage: National

The chapters of Variety are a multi-million dollar philanthropic organization with locations throughout the United States. Starting with a baby left on the doorsteps of a movie theater in 1928, we have continued to be a group of local business men and women, many of whom hail from the theater and movie business, reaching out to children in need. Today, through the efforts of our enthusiastic volunteers and generous corporate contributors, we remain true to our heritage by bringing children real, tangible help.

During 2014, Variety of the United States continues our outreach by developing a strongly supported national program to assist children in every community:

Variety's National Mobility Program provides much needed assistance to children with mobility concerns. Over the years, we have found that these children desperately want to be active members of their communities. But they need what most of us take for granted: access. For children with disabilities, this means having the freedom to go where they want to, either on their own, or if they need assistance, reducing the impact they make on those helping them. With the advent of many new mobility technologies, this access is becoming available to more and more children. The goal of our Mobility Program is to see that they get it.


Thursday, October 16, 2014

Grief

We chuckled when we referred to the two Bens as BO & BM, their initials forming unfortunate shorthand for human functions not talked about in polite company. They were in preschool together, neither very mobile and left on their own much of the time. Ben's mom, Donna, and I bonded over the mistreatment of our sons, both of us ultimately taking them out of the poor situation. Donna was going through a divorce at the time and had a lot of stress on her. She was a single mom trying to help her Ben.

Donna's Ben had a smile that stayed with me. His eyes were part of that smile and any interaction I had with him, even at that small age of three, I knew that he was listening and welcomed my attention.

After leaving the original preschool, I lost touch with Donna. A few years later, we all ran into each other at a children's library and stayed in touch from then on. Donna wrote a few posts for eSpeciallyBen, and then I did not hear from her for a few months.

At that same children's library, where we had reconnected, I saw a mutual friend. She shared with me that Donna had died suddenly. I do not know the details, but it may have been breast cancer that came out of remission. I was devastated. What would happen to Ben? How would he understand that his mom would not be around? The questions hurt.

Donna's parents stepped in and took over full care of Ben. We saw him often at summer camp and other random outings. His caregiver, who helped the grandparents, was loving and sweet to Ben. Having never met the grandparents, I printed out Donna's posts from the blog and sent them to them through the caregiver. It was my way of showing that I cared about her.

Just this week, I received an email from Ben's grandma, a first. I was excited that she was contacting me. I immediately thought that we could get the boys together. She said she had news to share, but wanted to be sure that this was the correct email.

My brain does not go to bad places quickly. I always assume the positive and I am, for the most part, optimistic. When at 7am, I read the return email telling me that Ben had passed, I was shocked. I cried on and off the entire day, while taking Ben to the allergist, going to the grocery store and getting ready for a work trip. I cry now as I write this on a plane.


I agree with what Ben's grandma wrote me. God has a plan and we may not understand it, but we must trust it. He gives us these beautiful children who change us forever. I grieve for Ben's family that their time with their precious daughter and grandson was cut short. I will miss Ben's smile, but he and his sweet mom will not be forgotten. They are both a part of our life story, made richer by their presence.

eSpecially Parents: Donna & Ben's story

Monday, October 13, 2014

Lemonade from Lemons

In April, Ben received his long awaited larger Convaid Cruiser, a portable and light-
weight wheelchair.  Within a month, the canvas seating began to fray on the corners and Ben pulled off one of the crucial straps for buckling after it frayed beyond repair. Both were quickly replaced by the distributor, the sales company that purchases the products directly from Convaid.

Within days of those repairs, the brake broke and a bolt came loose from the handlebars. Again, the same technician from the distributing company came out and handled the repair. His general diagnosis about the continual repairs was that the chair was put together too quickly, probably on a Friday afternoon. 

On a "it is a small world" side note, the technician had an unusual last name and I commented that I was friends with someone in high school by the same name.  He doubted this because very few families in the world shared this surname. After a careful game of who, what and where, we confirmed that he was first cousins with my friend from high school.

Within a few weeks, Ben's Brand new canvas seat began to fray again. Then our family went to the beach and while Ben and I strolled on the sidewalk, the wheel completely came off the chair.  It took me a minute to realize what happened because we were suddenly lopsided. Luckily, Ryan was a quick walk away and came to our rescue. After some serious phone calls to several people in the company, a technician came to the hotel at the beach and patched up the broken wheel baring. It was not a permanent fix, but If we were careful, it could work for the short while we were on vacation.

Throughout the four months of breakdowns and repairs, I stayed in contact with our salesman who was responsive to each issue.  By the time the wheel came off because of a broken baring, I knew that either a new chair or a complete overhaul was needed. This was Ben's second Convaid chair so we knew that the product was a good one, just somehow, Ben received the proverbial lemon.

Our salesman contacted the Convaid company to see how to handle this situation. Again, he summarized the situation, communicated with the right people, even heard back good things, but nothing happened. We were promised a demo while the current chair was analyzed and repaired.  Several weeks went by, then a month, and no demo. The canvas seating continued to fray and, I was waiting for the other shoe to drop - what would break next at an inconvenient or even worse, unsafe time?

With much frustration, I looked into the Convaid company, deciding to send emails to those who may respond to Ben's needs.  First, I found out that the company was started in the 1970's by a mechanical engineer and his occupational therapist wife, after seeing a gap in the market. Heavy and cumbersome wheelchairs were the only option for people with mobility issues. The husband and wife team designed the Convaid Stroller and started a company.

Next, I reviewed all the emails between the salesman and Convaid to see what had been offered, but more importantly, who had been copied on all the emails. I happened to find a name attached to the email that looked more authoritative than the people we were currently in contact with. I also copied my email to any people I found on the Convaid site that may be higher up in the company.

My email was informative, respectful and I received a call within three hours of sending. Ben had a demo chair the next day. By the end of that week, I knew I wanted to keep this new demo chair. It was a different model, one I had declined from the online photos during the sales process because I thought it would not work for us. Our new contact (and new best friend) at Convaid accepted my proposal to keep the demo. The damaged chair was sent back to Convaid for review. Clearly, something had gone wrong in the production.

Ben has a new chair with a larger back wheel, cushioned seating and a very cool fabric basket underneath. We have had no issues and do not expect to this time.


What I learned: People generally want to be helpful, but things fall through the cracks. Persistence, follow-through and keeping your sanity throughout the process will help get the response requested. Keep good notes and do as much communication through email so there is a paper trail With dates, names and actions. Creative solutions, thinking outside the box and getting others involved can make a bad situation better, maybe even great.