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 efficien...

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 pers...

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 Charlo...

Our grassroots effort to raise awareness and attendance at the Special Olympics Opening Ceremonies is paying off. One of Ben's community workers, Joey, forwarded the information about Operation: Fill The Stands to his church. It was in the church bulletin yesterday, read by one of the members who happens to be a reporter, Sharon Smith. She contacted Joey and the story was born. And with a little competition between news stations, the story got picked up by another local channel. The actual event will be covered by TV stations as well, an unusual occurrence, I am told. Watch them here: WBTV  - Sunday, April 20, 2014 WBTV  - Monday, April 21, 2014 Fox News  - Monday, April 21, 2014 WBT Radio  - go to 6:53 for the start of interview - Monday, April 21 Fox News  - Tuesday, April 22, 2014 Charlotte Observer  - Wednesday, April 23, 2014

Our church decorates the cross each Easter morning before the service. Members bring clippings from their gardens and everyone participates in the Flowering of the Cross. A great way to begin the day.

Since Ben was first diagnosed with delayed development at six months old, he has seen over 20 occupational, speech and physical therapists, and that does not include the ones at school. Most of these therapists provide in-home services so we do get to know them well. When it is not a good fit, they leave after a few weeks or months. Others stay with us for a few years building a strong bond with Ben and our family. Sarah R. was Ben's OT for over two years. She was one of those therapists who built a strong relationship with us. She involved Logan and Sean in sessions when they showed interest. When Ben started using the NOVA Chat, Sarah embraced it and incorporated its use in all of Ben's sessions. She helped develop ways for us to use it in everyday tasks. Sarah has been with us over this remarkable time of Ben's development, and she stepped up her game to challenge him. Throughout her time with Ben, Sarah made sure he was getting what he needed. She was instrumental...

2013 Opening Ceremonies for Special Olympics 1100 athletes  will march into the Bojangles Coliseum. Last year, there were  20  spectators. Wouldn't it be great to have a large crowd cheering them on? Let's fill those stands and show our support.   Special Olympics Opening Ceremony for  Mecklenburg County, NC Tuesday, April 22, 2014 10am-Noon Bojangles Coliseum Independence Blvd. If you live in another state or county, find out when your local Special Olympics have their Opening Ceremony and go out and support the athletes.

Each month, Ben's lovely principal gives out an award based on a character trait. Two students from each grade level, and two from the special education classes are chosen to receive the awards based on their behavior and actions the month prior. The students are honored in a short presentation.  The principal gives each child a certificate, gets a photo taken with them and then the child chooses a special snack. The photos are placed on a board for the entire month. My mom and I were picking up Ben and inadvertently stumbled upon the presentation. It was our lucky day! 

One cold day this winter, instead of swimming at the YMCA, Gale suggested they play in the gymnastics room and make an obstacle course for Ben to do.  Take a look at what Ben got to do in this physical therapy session.  It is hard to see Ben smiling in this video because the view is from the side, but he is smiling wide. Thank you to Joey for taking the photos and video.

Everyone has their reasons to complain. I do it also. I complain about people, programs and events. However, I have made it a personal policy to thank and praise  publicly . Here is a letter I wrote about the school psychologist who recently coordinated a re-evaluation for Ben: Recently, our fourth grader, Ben McCall, underwent a re-evaluation for services. Sarah C. was the school psychologist coordinating the evaluation. I had never met Sarah before my first appointment with her to go over the process. Our last meeting was this past Friday and after almost three months of information swapping, meetings and email conversation, I feel that she is an ally for our son and most definitely a prized employee to the school system. Right from the beginning Sarah was interested in hearing about Ben – at home, in school and out in the community. Although she gave us many forms to complete, she allowed me to share stories that demonstrated Ben’s abilities. She read my blog to fi...

If you have not read Part 1 and Part 2 , then catch up here. For a quick summary - Ben participated in IQ testing over the past several months with a neuro-psychologist and the school psychologist. Part 3 will review the results. After each of Ben's testing sessions with the neuro-psychologist's team, the doctor called me to brag about how well Ben did on each portion of the test. Many months have past since the actual testing and the feedback meeting. It has taken me a long time to write this. I was not sure how to approach it - it was a lot to take in for me both intellectually and emotionally. Digesting it all and then writing about it was a hard task. I started this post numerous times. At the feedback meeting, the neuro-psychologist gave us information about the tests, the scores and what they meant. I am not getting into the scores because they are just numbers. I don't think I could do justice to the meaning of the numbers and the test descriptions. If you want ...

Last year, I met a family in South Carolina raising their grandchild, Aubri, who has special needs. We had a large wheelchair not suited for Ben and through an online exchange program, the grandmother came to our house to get the chair for Aubri. We connected on a few different levels and have remained in contact. This is the post from last year:  Reduce, Reuse, Recycle Ellie, the grandma, contacted me this week about a fund raiser to help build Ellie a therapy pool. This is the link - feel free to read and share:  Therapy Pool Fund Raiser .