eSpecially Ben

Ben's PT sent this email to me. I forwarded it to our family because they like to see updates on Ben's progress. The simple forward started a chain reaction of positive energy, attitudes and reignited passions. Who knew a few words and clicks on a keyboard would be able to forward kindness and appreciation? Vanessa, Ben had an AWESOME physical therapy session today! I have a   high-school student shadowing me on Tuesday and Thursday afternoons. I think  having her in front of Ben (because I am so often behind him offering cues/facilitation for proper mechanics/strengthening) added additional   motivation to excel!  We did several sets of sit-to/from-stand without my assist during the transition (but assist for balance once in stand) on command 100%  of the time. We did 10 reps of stand to/from squat to retrieve a toy from the  floor with minimal assist to grab toy (most times he either drops it, flings   it, or sticks it in his mouth)! We had several core strengthening act

As told by Ryan to me: I learned a lesson today. Ben fought me as I put on his ankle foot orthotics (AFOs). He kept his toe pointed out, making it impossible for me to get his heel into the brace. We struggled for awhile, and I finally forced his foot in. I continued to put the Velcro in place, but nothing seemed to fit correctly. Then I realized why nothing was working right, I had the brace on the wrong foot. Ben fought me so hard because he knew it wasn't right. Ben has done this to me several times too. When our children don't use words to express themselves, we have to listen using our other senses. Last night, Ben had a hard time falling to sleep because he was stuffy from a cold. About 10pm, Ben crawled into bed with Logan.  Logan came to get me. When I got there, Ben was curled up in a ball, ready to fall asleep. I moved Ben to his bed and put on a video. About an hour later, we found Ben curled up at the end of Logan's bed again. It finally dawned on me that

This week I learned that one of our eSpecially Parents writers, Donna, passed away in November. She had battled breast cancer a few years ago, but it apparently came back quickly. I was last in touch with Donna in mid-September, but after that, the eSpecially Parents Series took a back burner in my life, and I lost touch with her. I met Donna when her son Ben was in preschool with my son Ben. Her son was known as B.O. and ours was B.M. Besides the silly initials and same name, both boys were not mobile. Donna was going through a rough time in her life with her soon-to-be ex-husband, and we were both dissatisfied with the education and services our Bens were receiving at the school. I felt an instant connection to Donna, and we talked when we could. Donna's Ben had a smile that drew you in. I knew that despite his mobility issues, he loved people and craved attention. He was not a child to be written off or shoved in a corner. And Donna knew this - her love for him was obvious.

“One of the best things I have seen children experience during a TR Summer Camp is…summer camp! At TR camps, every child is encouraged to participate in all activities, to the best of their ability. Whether the plan for the day includes pottery, music, swimming, gardening activities, a field trip, or a visit with snakes and turtles…each and every day holds surprises and the potential for learning. I love seeing the children form friendships…especially when the “camp buddies” get together outside of camp, too.”   -- Karen, Camp Staff Therapeutic Recreation Camp is $100 per week per child and includes 5 full days of activities and field trips. The price is reasonable, but can still be a burden for families. Amazing Race is a fundraising event for the scholarship fund. We have an eSpecially Ben team for Amazing Race and we need your help. A $5 or $10 donation will go a long way. ****As of 2/16/12 at 4pm, Amazing Race has been cancelled. Thank you for your support! **** You c

Mecklenburg County's Therapeutic Recreation's Amazing Race is Saturday, March 24, 2012. All funds raised go directly to the scholarship fund for summer camp. Summer Camp is 8 weeks long with over 150 children with special needs participating. Last year, over $6,500 was given away in scholarships. In times of budget cuts and loss of resources, Amazing Race is a creative way for the staff to raise money for the children who may need financial assistance attending camp. I will be posting photos from 2011 camp. I am only posting photos that do not show faces of the children, but you will get the idea about how much they enjoy the activities. You don't have to see their smiles, you just have to feel them. The staff have sent me their thoughts on how they feel about camp and I will be posting those as well. Most are trained as recreational therapists and have devoted their life's work to helping children and adults with special needs learn skills, make friends, de

We made changes in our house when it comes to dinnertime. The biggest one is that whatever we serve, the kids eat too. In the past, I cooked another kid friendly meal. To tell the truth, sometimes I made a third special meal just for Ben. It was a lot of cooking for every evening. My friend and I started in December sharing our dinner meals - she cooks twice a week for my family and I cook twice for her family. We basically double the recipe and deliver the meal to the other family.  It is working out - we are getting new tasty meals and I have less work in the kitchen each week. I also think the appreciation we get from another family adds to the joy of cooking a good meal. When we started the shared cooking, I decided the kids had to eat what we eat. It has been a challenge, and they have eaten a few bowls of cereal and PB&J when the meal just was not going down. However, they have tried things they would never have had the opportunity to try. And sometimes, to their great surpr

It was 2008. It was Ben's very first year at camp. Thank you Angela for sending this photo. Always nice to look back.

First in Families is a statewide organization that does a number of wonderful things for people with special needs. Here are a few I borrowed from their website: Helps people with developmental disabilities and their families to create the lives they want now and for the future. (Visit Lifetime Connections ) Provides guidance and oversight to local First In Families Chapters. (Find a local FIF Chapter ) Nurtures the growth of new FIF Chapters. Assists in developing statewide policy for implementing self-directed supports for people with disabilities. (Visit Advocacy ) Our family applied for help from First in Families when Ben needed a computer that would run pre-literacy programs and activate his touch screen. Ben received the funds to buy the computer. If you have the hankering for some flapjacks, consider attending this fund raiser. Feel free to share this with others. It would be great to eat Applebee's out of pancakes!

It has been two years since we last went to the circus, but with coupons in hand, we were not going to miss Ringling Brothers and Barnum and Bailey Circus this year. This was Ben and Logan's third time, but Sean's first time seeing the circus. I love the circus, but seeing the boys so excited was a thrill - that whole seeing things again for the first time through your kids eyes phenomenon. According to them, we had the best seats, the guy on fire was their favorite part and Sean now believes elephants exist. To my surprise, on the way to the arena, Ryan picked the kids up, one by one and let them look over this big wall. The secret - this was the behind the scenes of the circus. We had a good view of the white tigers. I even got a heave-ho over the wall to see. Our seats were on a higher level, and the first in the row so we had the wall right in front of us. It helped because Ben was not distracted with people directly in front of us - meaning he did not have peop

There are many interesting people in the world. Individuals with cool stories, living amazing lives changing the world. I am in awe of people like this - especially when I get to meet them and realize they are regular people, just like you and me. They have made the choice to do something different with their path in life...reminds me of Frost's The Road Not Taken . A new neighbor shared her families' story with me and then forwarded their blog:  Casa de Sion . Take a look at it.