eSpecially Ben

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.

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!

Need more sheep to count...

2011-12-06T11:27:00.001-05:00

This is an addendum to last night's post. In my enthusiasm to solve Ben's sleeping problem, I gave him all his medication at 4pm, including the sleep aid. And like I said in my last post, he was sound asleep by 8pm. At 1:30am, he was bright eyed and bushy tailed and remained so until I sent him to school on the bus.

We try again today. I still have high hopes...just need to administer the medication according to schedule. A lesson learned every day.

Counting Sheep

2011-12-05T20:33:00.000-05:00

Today was the sleep consultation for Ben. I asked Ryan to go because he had information to add, but really I did not want to seem like a raving lunatic when I described Ben's sleep situation.

I had nothing to worry about with this doctor - he made no assumptions, asked many questions and walked us through options for Ben. The doctor admitted that Ben's sleep pattern was unusual and offered many explanations and possibilities. He spent 45 minutes with us and probably would have spent more if the kids (and me) had not gotten antsy.

These are a few of the things I learned:

1. Sleeping pills have not been tested on children. It just has not been done. And they definitely have not been tested with children with special needs. I see a future in this area because so many parents deal with their child's insomnia on a regular basis and do not know what to do.

2. It is possible that when Ben was weaned off a seizure medicine called Clonazepam in May, we inadvertently, took him off the sleep aid he needed. Although Ben was using the medication to curtail break through seizures, Clonazepam is also a sleep aid and it may have been helping Ben get to sleep at night.

3. The doctor offered to do a sleep study with Ben, and he explained in detail what the procedure entails. Let's just say it involves a lot of electrodes on his face, near his mouth, legs and then 20 more on his head. Then an oxygen line is needed in his nose. I kept myself from laughing at the thought of Ben being contained with all those things attached to him. It would be more a study in the adult's reflexes than a study of Ben's sleep.

4. Melatonin, in a small dose, given early in the day, everyday, can be used to help set a sleep rhythm.

We concluded the visit with the decision to give Ben the smallest dosage of Melatonin at 4pm, and then start him on his old dosage of Clonazepam. We will keep in touch with this doctor as well as Ben's regular neurologist. We may have to do a sleep study in the future, but we are going to see how this works first. I am glad to have a plan. I am even happier to find a doctor who seemed truly understanding of the situation and willing to try different methods to come up with a solution.

I started this routine today and as I write this at 8pm, Ben is in his bed, asleep.

Abracadabra

2011-12-01T20:05:00.001-05:00

Sean has been testing my patience recently. The final straw was when he yelled that Daddy was in charge, not Mommy. Unfortunately or fortunately, Daddy was not around to eat this declaration up.

As I was getting the boys ready for bed, I pulled Sean aside and explained that his Daddy and I were sad about his behavior lately. I asked him what he thought we could do to change it. His instant response, "You can use a wand." I was pretty sure what he meant, but asked anyway. He said I could use a wand to change things, and as he glanced around the room, he said that he was certain that we had one around here somewhere.

Sean's in bed now, and I am looking everywhere for that darn wand.

Being Thankful

2011-11-24T07:00:00.000-05:00

Ben saw some kids at the park playing in a big pile of leaves.

Ben wanted to be a part of it all. They let him join in and even brought over more leaves for him to enjoy.

Ben-Proof

2011-11-16T07:00:00.000-05:00

I just bought a new pill box, the one with the days of the week written on each small compartment. It has a button on either end - red to unlock the compartments and green to lock the compartments. As I was filling it and thinking about what a clever gadget it is, I stopped in my tracks and realized the reason I bought a new one was because Ben ripped open the other with his teeth. I just don't think the little button system will stop him from getting into this one.

That will be a job for some engineer, making something Ben-proof.

Friendship

2011-11-14T07:00:00.000-05:00

At my parent teacher conference, Ben's new teacher shared a story about him. There is a girl in the class who is in a wheelchair, has very little movement and is completely non-verbal. Since the first day in class, Ben has been interested in her. He reaches for her hand, holds it and makes her smile. From what the teacher said, they have a bond; a friendship has formed.

I know how special Ben is, about his ability to bring people together, but I was still struck by this story. The teacher spoke about Ben's compassion. Have I ever considered this emotion in Ben? Had I thought him capable? How sensitive and thoughtful is the teacher to see this unfolding in the class and describe it with such love and caring?

Once again, Ben has taught me something new.

Sleepless Beauty

2011-11-11T07:52:00.000-05:00

It has been a tough couple of weeks - Ben, for some unknown reason, has not been sleeping. One night, he actually never slept. I mean, he never ever slept a wink. Not once. Other nights, it was not until 3 or 4am that he fell asleep. Some nights he woke at 1:30am and was up for the rest of the evening.

On some of these nights, when I was at my wits end, I gave Ben a sleeping pill or Benadryll, a dose that would normally knock out an adult, let alone a 50lb kid. Alas they did nothing for him. One night, he spent the entire eight or more hours laughing hysterically while watching Bob the Builder movies. Between his cackling and my husband's bronchial coughing, I thought I might lose all sanity.

I tried soothing music, laying down with him in my bed, his bed and on the couch. I gave sleeping meds sometimes and others not. When those ideas did not work, I turned on the TV, then thought it was too much stimulation and turned it off. I locked him in his chair, I kept him out. Nothing worked.

At school, Ben was misbehaving, biting other students and refusing to do his work. For the first time, Ben came home with the Frowny Faces circled, rather than his usual Smiley Faces.

To say frustration was becoming a part of my soul, is to put it mildly. I was beginning to fear the night because of what calamity it entailed. Worse than insomnia is forced awakeness. In my worst moments, I began to think that we would have to send Ben to a place at night that had paid staff that would be awake with him.

Finally, I made a call to the doctor for a sleep study. We have a consultation appointment in December. But of course, Ben has slept soundly the last two nights. And he's happy and rested. He came home yesterday with a constant smile on his face and a great report from school. These photos are from yesterday...I could not help myself.

Spread the Support

2011-11-08T15:46:00.002-05:00

One of our Grin Kid companions, Hayden is in a Halloween Costume Contest. The prize is an Ipad 2, that may help Hayden with his communication.

Please take a moment to vote for Hayden in his Spiderman costume - he is a few photos down on the list.

Vote for Hayden - Wolf-Hirschhorn Halloween Contest

And take a moment to read about Wolf-Hirschhorn Syndrome.

Thanks.