eSpecially Ben

The paperwork mounts as I file reconsideration and waiver forms for Social Security Income (SSI). There are some weeks that I receive a letter from Social Security Administration (SSA) every day, sometimes two come in one day. Next in line for the appeal process is a hearing with an Administrative  Law Judge (ALJ), which I found out today could take up to a year to schedule. Today, I spoke with a lawyer from the legal aid organization in our state. They have a file on us, but are not officially handling our case. It seems they will jump in after I have exhausted all appeals and waivers. They do offer advice on what paperwork to file and what steps to take to keep our case moving along. In another arena, Letters of Medical Necessity (LMN) have been added to my paperwork frenzy. Our local management entity, a private agency that manages the state resources for community programs for children and adults with specials needs, Medicaid, etc, has changed. The new company is efficient, o

Our Family Weekend experience at Victory Junction was incredible and best shown through photos. It is the only way for you to see how much we did in less than 2 days. Not pictured, the Talent Show, Fab Shop (get your hair painted), 50's Rock & Roll Dance, tree house (accessible to wheelchairs), mini-golf, maze, arts & crafts area and wood shop. A pool & zip line are available during the summer. The families we met were all great. Kids made quick friends with our cabin neighbors. Our camp counselors showed us the ins and outs of the camp and activities. Personally, the camp wore me out. Ben was too excited at night to sleep and the eight twin beds in our cabin were too much for him. He had to travel from one to the other. This would not have been so bad had it not been 10pm at night and other family members were sleeping in them. Inside our cabin. Sports Complex Cabins for the campers and families. Dressed up for the 50's Rock &

If you want to make Ben mad, give him an activity that he sees no point in doing: make him throw a tennis ball to no one and then make him walk 10 meters in a particular direction that is not of his choosing. Ben participated in two events this year in the Track and Field Division of the Special Olympics Spring Games. He took silver for the walking event, and only threw the tennis ball when I stepped in to catch it. In contrast, Matthew , the son of my freshman college roommate and good friend, Karen, reveled in the games. He took a Gold for the 100m run and exclaimed, "I did it!" while he was on the platform. Last year he  walked, but this year, he stepped up his game and ran the entire race.   Matthew, 9 year old Olympic Gold Medalist Each athlete is paired with a high school student at Charlotte Country Day School. This year, Jacob, helped Ben get to and from his events, participate in the crafty activities and maneuver around the crowds. Jacob

Two different moms wrote to me on the Full Enough post and I thought they were important enough to re-post their comments here: My 10 year old son, Sam, and I attended the ceremony today after seeing your story on the news a few days ago. As soon as the story ended, he looked at me and asked if I would take him. Since we live in Gaston County, it is our spring break. I knew it was something we had to do! I felt truly blessed to be a part of today's events. I have been working with special needs children for almost 9 years now, and I realize just how special these kids truly are! Sam had an amazing time and is also proud of all of the athletes! Thank you for getting the word out! We hope to be there next year! Good luck Ben!!!!! -- Donna Kostiuk I was debating on texting my son's teacher to find out what time and if the parents could go to the Opening Ceremony when I saw Astrid Martinez on WBTV yesterday morning. I ran into one of the cameramen for WBTV and thanked them

The pastor at our family's church, Sara Ilderton, attended the Special Olympics Opening Ceremonies on Tuesday. It was her first time attending, and the experience was quite more than she had bargained for. Pastor Sara writes a blog, and I have re-posted this with her permission, and added the photos to give a visual to her story.   She has captured on "paper" what many of us felt. About a minute-and-a-half after the athletes started coming in,  I wanted to knock Ethan out …He’s our Minister of Youth & Families. He was standing right beside me, and his constant “whoop-whooping” poured down on me from his 6’2” height and echoed throughout the entirety of the Bojangles Coliseum. A bunch of us from the church went to support Ben – St. Luke’s own  Special Olympian (check out  eSpeciallyBen ). Anyhow, Ethan’s excitement and enthusiasm were, quite honestly, more than a little annoying –  at least at first . I’m fairly certain that every person there c

In 2013, my boys and I attended the Mecklenburg County Special Olympics Opening Ceremonies. We were 3 of perhaps 20 spectators. While we had an incredible time, I did wonder how much more fun and special the event could be if more people came to cheer on the athletes. I made myself a promise to bring more people along the following year. In late March 2014, I started a campaign called  Operation: Fill The Stands . The name came from the photo below that I snapped while at the 2013 event. I am an "ask permission first" rather than "ask for forgiveness later" type of person, so I contacted Greg Morrill, director of the Mecklenburg Special Olympics to let him know what I had in mind. At that point of contact, I was hoping for a few extra people. With Mr. Morrill's blessing, I sent out 100 emails to family, friends and a few acquaintances expecting 20-30 more people to attend. On my Facebook page and blog, I posted the photo and asked for ways to get more spe

The 2014 Opening Ceremonies for the Mecklenburg County Special Olympics were this morning. Our efforts to increase attendance worked. Last year, about 15-20 family members attended. This year, over 400 family, friends and community members cheered loudly for each and every athlete who marched into the Coliseum.  There were many special moments while we were there. When Ben walked in (he was in his walker!!!) his personal cheering squads yelled extra loud. I was a few feet away from him, and I struggled with letting him see me or not. Often if he sees his family in a crowd, he wonders why he is not with us. But the decision was made for me, the crowd was so wild and loud, he could not hear me anyway. Just as he walked past me, I noticed him look up at the audience, then give a double take at all the people cheering. My tears came then and even now when I write this. While we were waiting for the ceremonies to begin, a woman introduced herself to me. She lives in Charlotte,