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 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:
Vanessa,
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.
Wednesday, February 29, 2012
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.
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.
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:
****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.
TR Summer Camp
Scholarship Fund
2219 Tyvola
Road
Charlotte, NC
28210
Tuesday, February 14, 2012
Make this Race Amazing
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:
****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.
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.
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:
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!
- 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)
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
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.
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.
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.
A new neighbor shared her families' story with me and then forwarded their blog: Casa de Sion.
Take a look at it.
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