Wednesday, February 29, 2012

Chain Reaction

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?


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 activities that he usually wiggles out of after 2-5 reps, but today sat through and   correctly performed two sets of 10! We did the "hokey pokey" with   floor-to-stand transitions ("Put your right foot up, put your left foot up,   push your bottom back, and stand on up")-- he did it ON COMMAND 4/5 trials.   And all that is only the beginning of his session.

This clever red-head outdid himself today. He better watch out as he set the bar high for next week. ;)

Proud (and humbled!) to serve your family,

Sue *

Here's my sister's response to the above email:

That's terrific. How great is it to know you have someone who obviously really cares about Ben's progress.  What a great email.
Thanks for sharing! Liv

Then I forwarded both emails above to the PTs supervisor/owner of the company:

Thank you for forwarding this message. Sometimes as therapists we get caught up in the paperwork and medical necessity of our "treatments". Messages like these make me realize that we are touching children and their families in so many more ways.

Jean *

Then it appears that the supervisor forwarded all the above emails to her staff:

Good Evening,

Tonight while I prepare for an important but I'll admit boring meeting tomorrow I am extremely motivated by this message. Sue*... You Rock! While we all have to endure ever changing policies and procedures, messages like this one reminds us of the positive impact we have on each child that we treat. We are doing small things with great love and that is what makes the difference to the kids we see and their families.

Thank You All for the work that you do each and every day with the little ones that are trusted into our care!

Jean *

* Names have been changed.

Monday, February 27, 2012

Listening Without Ears

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 Ben did not want to sleep alone - he wanted company. So I climbed into Ben's bed with him, and he fell asleep instantly. 

Thursday, February 23, 2012

eSpecially Parents: Tribute to Donna

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.

Our Ben left the preschool abruptly after some particularly bad care, and I lost touch with Donna. I always wondered about Ben and Donna. I had tried to call a few times, but she had a lot going on and it was hard for her to stay in touch.

Years later at a local children's library, our Ben found the other Ben and Donna sitting on a bench. My mom was with me and we all gave hugs to one another (my mom had met Ben and Donna at the preschool). The connection we felt with this family was full of love. I was so happy to have found Donna, and we then stayed in touch through email and some phone conversations. When I started the eSpecially Parents Series, she was a person whose story needed to be shared. Her perspective was different than other families I knew.

If you have not read Donna's story, please read it here. Her love and devotion to Ben is clear in her words:

Donna's Story
Ben is in the care of his grandparents right now. If you send prayers to heaven, God or your own special place, please include Ben and his family in them.

Thursday, February 16, 2012

Summer Camp: Staff Perspective 1

“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 can still donate to the Summer Scholarship Fund though.
Donate the old fashion way - write a Check or Money Order to "Partners for Parks" and send to:

TR Summer Camp Scholarship Fund
2219 Tyvola Road
Charlotte, NC 28210

Tuesday, February 14, 2012

Make this Race Amazing

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, develop interests and enjoy hobbies and recreational activities. They are some of the most caring and gentle people I have ever met.

We have an eSpecially Ben team for Amazing Race and need your help raising funds. 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 can still donate to the Summer Scholarship Fund though.
Donate the old fashion way - write a Check or Money Order to "Partners for Parks" and send to:

TR Summer Camp Scholarship Fund
2219 Tyvola Road
Charlotte, NC 28210

Sunday, February 12, 2012

The Food & Veggie Plate Experiment

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 surprise, they have enjoyed it.

One thing I added to our new dinnertime is a plate of fruits and vegetables for everyone to share. I think I read about it in a magazine awhile ago, and it is a variation of my sister's mystery dinner night. She takes all her leftovers, puts them on a plate and family members take what they want. I do something similar with the fruits and veggies. Depending on what I have stocked, I cut up apples and bananas, add grapes and strawberries, cucumbers and broccoli, put them on a plate and serve.

It has been a weird and strange thing to watch what happens with the fruit and veggie plate. Everything disappears and often there is a fight over the last piece of fruit on the plate. They eat way more than if I had simply put the items on their plate. My husband and I look at each other in confusion. We have had lengthy discussions over the why. We have come up with - it looks attractive on the plate, they get to choose what they want and nothing is forced upon them.

Thursday, February 9, 2012

Flash Back: Summer Camp

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

Tuesday, February 7, 2012

Short Stack for a Tall Cause

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!

Sunday, February 5, 2012

The Big Top

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 people to bug. I did not plan this on purpose, but will next time.

Ben stood for the entire first half - enthralled with the lights, music and action. During the second half, the attendant allowed us to sit in the handicap seating with Ben's wheelchair. Ben's attention was completely on the show. At one point, I put my hand on his leg to say hello, and he pushed it away.

I noticed more kids with special needs at the circus. Ben saw a classmate from last year and I noticed another kid too. As businesses make it easier for parents to take kids out who have special needs, I think families will venture out more often. I know our attendant was so helpful with stowing Ben's wheelchair when we did not need it and then finding an alternate place to sit when Ben's legs gave out and he needed a more stable place to sit.

During our ride on the elevator, a circus employee gave us 50% off coupons for next year. I am already making plans.

Thursday, February 2, 2012

Interesting People

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.