eSpecially Ben

Summer Camp: Staff Perspective 1

2012-02-16T07:42:00.000-05:00

“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

Make this Race Amazing

2012-02-14T19:38:00.002-05:00

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

The Food & Veggie Plate Experiment

2012-02-12T07:00:00.000-05:00

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.

Flash Back: Summer Camp

2012-02-09T07:00:00.000-05:00

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

Short Stack for a Tall Cause

2012-02-07T13:57:00.000-05:00

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!

The Big Top

2012-02-05T11:35:00.002-05:00

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.

Interesting People

2012-02-02T20:18:00.000-05:00

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.

Amazing Race

2012-01-30T19:27:00.000-05:00

Get Ready...March 24, 2012

**Amazing Race has been cancelled
as of 2/16/12.**

Ben Brings Home The Silver!

2012-01-26T19:46:00.004-05:00

Ben receiving his medal.

The lump in my throat and the tears welling up in my eyes is a recurring experience for me at any Special Olympics event. We arrived early and Ben was not even at the bowling alley, but I was fighting back tears. Luckily Logan was with me to keep me in line - he wanted to play video games while we waited for Ben's bus to arrive. A mom crying at the bowling alley before the games even began would have made for an interesting tale.

This is the first year Ben could officially compete in the Special Olympics. The school organized the practices and coordinated with the county division of Special Olympics. I am unsure how it all works, but Ben bowled today.

The national anthem was played to a crowd of over 100 students, teachers and volunteers at the local bowling alley. The athletes repeated the Special Olympics Oath: “Let me win, but if I can not win, let me be brave in the attempt.” It was not the torch or a billion dollar fireworks show, but it worked for me. I was proud of Ben for being there.

As far as Ben goes, he was more excited to have his brother, Logan, visiting. His effort and enthusiasm for the game of bowling was less than stellar. It is the chance I take when I visit Ben at school or any program - his attention is on his family and not the task at hand.

Ben received 2nd Place, he competed against the other two students in his lane. Everyone who participated left with a medal.

I think part of the reason I am misty eyed during these events is that I am warmed by all the people it takes to put this type of thing together for my child (and all those other kids too). Without the assistance of the adult and children volunteers, the event could not have taken place.

Let's not forget Eunice Kennedy Shriver's vision and leadership in making the Special Olympics a reality.

Adaptive Playground

2012-01-26T07:00:00.000-05:00

Just found this playground about 20 minutes from our house - it has adaptive equipment. This see-saw is great for working on balance and building core strength. Ben doesn't realize he's working because he's focused on playing with brothers and Grandma.

Warning: You May Laugh

2012-01-24T07:00:00.000-05:00

The operative word in the title is "may". Only people with a certain sense of humor will find this funny, and who are not Vanessa and Steve.

Before Christmas, we received a large box in the mail addressed to "Vanessa and Steve". My husband's name is Ryan, but a simple mistake was not going to stop us from opening up a present.

Although excited to rip open the package, we slowed down to read the card. It read, "Hope you have a wonderful holiday! And good luck on that happily ever after stuff." It was signed by Ryan's long-time friend and jokester, John.

We receive packages and letters from John every so often. One year, he wrote an entire letter in Old English. Another time he sent a brochure of a building he and Ryan had renovated 20 years ago with captions about memories they had during the project.

We had no idea what to think when we unwrapped the bubble wrap and saw, a large pottery plate painted with a bride and groom and the words, "And they lived Happily ever after" and Vanessa (heart) Steve written along the rim. Then a $1 sticker caught my eye. Then I got it.

The plate is on display in our dining room.

Resolutions, Recision & Rupellary Times *

2012-01-23T07:00:00.000-05:00

The last 6 months have been tough for me physically. I mentioned cysts and stress fractures last fall and now I have a new ailment that may be chronic and is extremely painful...and ummm personal. So I will not get into gory details, just that my comfort level can prevent me from being 100% at times. After putting off the inevitable, I have to see the specialist.

My 2012 goals: Get back to exercising, cut back when I need the rest and get through this new ailment with grace.

* Love my "R" words? Got them from Unusual R Words

The Skinny on Retarded

2012-01-22T07:00:00.000-05:00

Anger, hurt feelings, confusion and ignorance surround the word "retarded". Many good posts have been written about experiences with the word. There's even a day to raise awareness and educate people about why it is not an acceptable way to describe things that are dumb or stupid. People who use retarded to describe a situation, saying or person, that in their opinion is stupid, do not realize that they are unwittingly applying a negative definition to retarded.

Ben is mentally retarded. It is okay to use those words in that context. There is a move to use different words like cognitively delayed and intellectually disabled because of the negative connotation mentally retarded has been given over the past several decades.

I think most people who use the word retarded or retard do so because it is something they have always said. Sometimes a bit of education and an effort to break a bad habit is all it takes. So spread the word, stop using the word in the wrong context.

PS -This link was sent to me and I thought I would add to this post. USA Today Story

Left Out Phenomenon

2012-01-20T07:00:00.000-05:00

Lately when pushing Ben in his wheelchair, people I know, say hello to me and not to Ben. And if you are thinking, they might be saying hello to both of us, think again. They are using the words, "Hi Vanessa." And yes, they know Ben's name.

It is easy to depersonalize a situation when someone is in a device that is passive, like a stroller or wheelchair. I do believe that if Ben was in his walker, he'd be acknowledged.

I have not figured out a diplomatic way to handle this yet, but I will. If you have a suggestion, feel free to send it my way.

On the Ice

2012-01-18T14:00:00.002-05:00

Last year when we were just observers of Sled Hockey, I wrote about how amazing these athletes were - both in skill and their ability to overcome whatever physical challenges faced them. I brought Ryan along this year and he was astounded by what he saw. He went into the experience with doubts about the sport and quality of the athletes, but after a few minutes realized that his misconceptions were based on bad assumptions. I'd say he did not believe me when I came back last year so excited!

Ben had the opportunity this year to get on one of the sleds and slide around with the Big Dogs. Ben is pictured here with one of the US Paralympic Sled Hockey team members. Ryan made sure this photo happened. Next year, he plans to stage a photo with the whole team surrounding Ben in the goal.

Ben spent a lot of time trying to get the helmet off and his fingers were cold after a few tours around the ice. If he hated it, he would have let us know - so I will assume he enjoyed being out and about. Logan and Sean looked on in envy, only kids with special needs were allowed on the ice. I struggled with them being left out, but reconciled my feelings of guilt knowing that kids get the spotlight at different times and this was Ben's turn.

If you get the chance to attend an event like this one - a practice or actual event of any US Paralympic Team - you will be happy you did so. It is an education for the entire family. There are many "take-aways" after seeing these athletes work their magic.

The dreaded helmet!

Just chillin'

Wise Guys

2012-01-12T07:00:00.000-05:00

Just because Logan turned down the opportunity to be in our church's Christmas Eve Pageant depicting the Story of Jesus, didn't mean that Ben could not be a part of it. Ben was assigned the role of one of the three Wise Men.

The beautiful robe Ben was supposed to wear was off him in less than ten seconds. The crown was a lost cause until we decided to hang it from his walker. We politely asked the people in charge if it was going to be okay if Ben did not wear the costume. They looked at us like we were crazy - of course it did not matter. The show must go on with Ben.

With two escorts, Ben made it down the aisle, up the alter and sat calmly for the pastor's reading of Dr. Seuss's How the Grinch Stole Christmas. Somehow he even wore the crown for this photo (photo below - left corner, sitting with Ryan.)

I was a proud mom. Not just of my son, but of my husband who stayed in the limelight with Ben and mostly of my church for its comfortable nature and inclusive love.

Special thank you to Mr. Terry for these photos.

Three Blooms

2012-01-10T07:00:00.000-05:00

Every year for Christmas, family friends Tom and Lutu Coffey give us a thoughtful and generous gift. When I collected pitchers to fill my kitchen shelves, they sent me beautiful ones designed by local artists. We still snuggle under the large fleece blanket they sent years ago. We looked forward to our special gift this year. We could not have prepared for this year's masterpiece.
We happened to be in town when Tom and Lutu were visiting their family in Charlotte. When they stopped by to drop off our gift, we let them know how we always appreciate their creative presents. We said this without knowing what was in the large bag they brought.

Ryan did the honors.

There were three framed photographs of orchids. Beautiful. Gorgeous.

All three photographs were of award winning plants.

The photographs were the official ones from the judged event.

Each framed piece had an official certificate attached to the back.

The first one was named for Ben.

The second was named for Logan.

The third was named for Sean.

Tom Coffey is the orchid grower and from what I understand, if you win an award for your flower, you get to name the plant. We were told that people could be growing little Ben, Logan and Sean Orchids from the seeds of their specific plant. Although, I do not have a great understanding of how it all works, I do know that this is an honor and very special gift.
Here's more information about orchids:
Dispelling the Myths about Orchids

Evolution & Merry Christmas

2011-12-24T19:06:00.002-05:00

The Evolution of the Christmas Card Photo*:

Merry Christmas from our family to yours!

* I borrowed this idea from my creative friend Kati. We all know how much goes on behind the scenes of the holiday photo. Sometimes it's fun to see the discarded photos too.

Don't Wait to be a Hero

2011-12-23T17:57:00.003-05:00

Scoop of Sunshine collects all types of quotes, articles and videos meant to make you smile, laugh, think and perhaps act. In the midst of harried shopping, crazy baking and family visiting, it is a good reminder to reflect on the bigger picture during this time of the year.

Clowning Around with the Shriners

2011-12-20T07:00:00.000-05:00

Santa and Mrs. Claus are the big draw at Mecklenburg Shriners Club Holiday Party each year. There's no delayed gratification between telling Santa what you want and December 25. After you get your photo taken with Santa, you walk off the stage and choose your present right then and there. This year, Ben('s parents)chose a Harley Davidson jacket - photo soon to be released.

If you are impressed with Ben's patience sitting on Santa's lap...about three seconds after the photo was shot, Ben had Santa's belt undone and off. He's that good. But as you can see, this Santa and all those involved in this wonderful organization have a good sense of humor and take it all in stride.

Need more information about the organization:
Shining at Shriners
Shriners Hospital
Shriners International

Wings of Hope

2011-12-15T07:00:00.000-05:00

It is easy for us to get caught up in our own issues, problems and complaints - I am just as guilty as the next person. If we can step outside ourselves once in awhile, we can see everything in its true perspective. Sometimes it takes a small gesture and sometimes a whack on the head. Lucky for me, this time I was given a hand.

Ben received this ornament and letter this week. A lot of emotion washed over me as I read the beautiful letter. I know it is tiny print, but please read it. If you want more information, read their website: Wings of Hope, an orphanage for children with disabilities.

Make My Day

2011-12-13T07:00:00.000-05:00

Ben spreads the holiday cheer with unexpected hugs.

And it begins...

2011-12-11T12:21:00.001-05:00

Our traditions are a big part of our family life, from apple picking in the mountains to choosing a Christmas Tree from the same corner lot every year. These traditions are what the kids talk about when they look forward to the next year. This is what they will remember thirty years from now when they think back to time with our family. The people who are a part of these traditions are just as important as the tradition itself - our neighbors, friends and family join in the fun each year too.

For countless years, we have invited neighbors over to build Graham Cracker Houses. We glue the crackers with edible Royal Icing (recipe below photos). We add an assortment of candy for decoration and voila, a beautiful table decoration and an on-going snack for the passerby is created.

As the kids get older their participation and imagination have grown. This year was the best yet, with many doing most of the work on their own, leaving the adults to mingle, eat and drink.

Our family typically designs one big house, but this year we tried something different, making a village of three houses, one for each boy to decorate. This turned out to be a better idea in concept - Sean's only interest was in eating the candy and Ben did not like the invasion of people in our home. I decorated Sean's house and Ben left the premises for his "secret" hideaway at the local coffee shop.

So perhaps my idyllic view of traditions and family memories is just that, but let it be my memory and I have the photos to prove it! See our beautiful creations below:

Royal Icing Recipe

· 3 egg whites - frothy

· 1 lb confectioner's sugar - about 4 cups

· Sift with 1/2 teaspoon cream of tartar

· Add together

· Beat 5-10 minutes until right consistency

Cover with wet paper towel so not to dry out.

Seeing Through the Blur

2011-12-09T07:00:00.000-05:00

I often find myself wondering about the motions of life - I mean the motions we go through every single day, week, month, year and decade. In a class I taught recently, one of the seasoned married couples talked about how decades have gone by that they do not even remember. Although it is good to know that others feel the same way as me, it makes me want to savor the mundane and notice the little moments. Inside that blur could be the spectacular.

Tonight, after Ben's physical therapy, I decided to treat the boys to pizza at Ben's favorite place. I left Ben sitting at the table while the other boys "played" Miss Pacman. (I do not give them money, they just watch the icons move around and either pretend they are playing or actually think they are playing - not sure which and I don't want to spoil the free thing I have going on.)

The pizza took about 20 minutes to get to our table. Ben waited patiently without complaint. When the pizza came, he remained calm. Ben ate easily and well, moving his hand to his drink when he was thirsty. I can only explain the experience by saying, he was present and in the moment, more so than I have ever seen. In fact, I had the thought that people may be surprised when we stood to leave and he needed my assistance to walk. His behavior was so different - mature, aware and calm.

I stop tonight to relish in this moment, to remember and cherish it. It will eventually be consumed by the blur of holiday festivities.

Toilet Saga Continues

2011-12-07T07:00:00.000-05:00

Remember when I last wrote about the Rifton Blue Wave Toilet, we were waiting for a donated one from another family? Well it did arrive - almost new, really. And within a few weeks, it mysteriously broke. And Ben landed on the floor of our bathroom. I was sure he hurt something with the way he landed. Ben was clearly puzzled by the look on his face.

After the dust settled and I was sure no bones were protruding from Ben's legs, I started to panic. I rely on this toileting system and without one, life becomes more difficult. A plan of action formed in my head and the next day, I contacted Rifton and told them the story - the whole story - including that this toilet was a donation. I explained that a small piece had cracked. I was hoping to purchase the small piece that broke. Well, of course, they cannot sell me just the little piece, I have to buy the whole thing. The customer service person asked me if I wanted her to work up a price. Yes, I did want her to work up a price, a small one, if possible.

When the customer service representative at Rifton called back, it was to tell me that they were sending a new toilet system and would pay to have the old one shipped. I was elated.

We are back in the saddle again, so to speak. And I firmly believe that when a company offers good service, we should pass it on...so please spread the word.

Thanks Rifton!