Thursday, December 31, 2015

Take the train, bus or trolley

Depending on where you live and type of weather you have had to endure during this holiday break, you may have been stuck inside quite a bit. 

This story is about our local trolley system and how we learned it was an easy way to have fun with Ben included. 

If you don't live in Charlotte, I am sure there is something new in your area to try. Check out their website or call about special accommodations for wheelchairs and other equipment necessary for your child to travel. Usually people are surprisingly helpful. 

Happy New Year!

Wednesday, December 23, 2015

Ben takes on Graham Cracker Houses

When I was in second grade, my teacher taught us how to make graham cracker houses using a milk carton base, graham crackers, candy and Royal Icing. Almost every year since then, I have made one. 

This year, I thought Ben would participate with our group of twelve children. He has been more focused on activities and participating in hands on experiences in school so I thought he would actually enjoy it. 

Joey, one of our awesome caregivers, helped Ben make a great house with a front porch. Ben lasted a good 40 minutes and then he was ready to move on. He lasted as long as some of the other kids and longer than his seven year old brother.

Other creations:

Directions to make a Graham Cracker House

  • Approx a 12” x 12” cardboard or baking pan covered tightly in tin foil. This will serve as the platform for the house. If you use a baking pan, make sure it is not one you will need soon.

  • A cardboard foundation for the house such as individual juice boxes (taped together), box from snacks, cut off the bottom of a ½ gallon OJ or milk carton. This will determine the size of your house. I recommend small.

  • One box of honey graham crackers – any brand.

  • Tape the foundation firmly to the cardboard.

Royal Icing Recipe

3T         Meringue Powder
4 cups    Confectioner’s Sugar
6T         Water

Saturday, November 14, 2015

Final Cut

Last night was the NARI Contractors of the Year (CotY) Awards Banquet. Ryan and I were invited. If you remember, NARI of Greater Charlotte is responsible for building the accessible bathroom for Ben. So Ryan and I got all dolled up and experienced the red carpet treatment with champagne, paparazzi and professional photos. It was a fantastic night out.

Halfway into the program, they showed this video. Be sure to watch to the very end, even after the credits. 

Thursday, November 12, 2015

The Bad, Bad Internet

Yesterday, Logan was sitting at the computer working on his ozone project. He was excited about it and wanted to share with me what he had learned. He told me that he had to search quite a bit to get the information. Searching on the Internet always worries me because I never know what innocent word may cause photos of naked people to pop up. If you have ever made the mistake of researching the White House as a company, you know what I mean.

Although we had the talk about Internet awareness many times, I felt like this was another opportunity to point out that bad things could come up when you are researching. Logan assured me that nothing bad had come up with his searches.

Then he stopped for a moment, "Wait. Something bad did come up on the computer."

My heart stopped. Inside, alarms went off. Outside, my face was calm.

I recently saw Michelle in the Middle speak. She spoke about the emotional and intellectual issues that children ages 11-18 go through and how to handle them as a parent. One piece of advice that resonated with me was about pretending you just had a Botox injection. Keep your face as neutral as possible when your child is telling you something that may not typically produce a neutral face. This encourages your child to share more about their life without feeling judged.

Neutral face on.

Logan explained about that bad, bad internet: "I was studying for my states test and I pulled up different sites to help me. One of the sites had Washington and Oregon in the wrong spots. That's bad Mom, right?"

Relief flooded through my body, "Yes, Logan, that is just terrible."


Saturday, October 31, 2015

Wednesday, October 21, 2015

Drum Roll Please: The bathroom is complete!

Our bathroom saga has been a long tale. We still have to add grab bars and a few other finishing touches, but it is complete. Hallelujah!

It has changed our lives immeasurably. 

It is unbelievable having bathroom space like this for Ben. Yes, it is beautiful and new and wonderful as far as bathrooms go, BUT it is AMAZING how much it has changed things for Ben:

1. Independence. Ben can sit on the toilet without the Blue Wave toilet system. He hated to be strapped into the special chair, and he refused to use the toilet. As soon as he was taken off, he went in the pull-up, no matter how much time we let him sit. It was a power struggle, and he won every time. And let's be honest, I took him less when I knew it was a lesson in futility.

Now, he is using the toilet without hesitation. He is not trapped by the strap, plus he is just like everyone else now.

Ben dresses at the counter. He holds on and lifts each leg to help put his pull-up and then pants on without being prompted. In the past, I laid him on the hallway floor and dressed him there. For some reason, he always refused to stand back up. Getting him up often took the help of my husband or the other two brothers.

Now he gets dressed and I walk him to his wheelchair. My back is saved, and he has the satisfaction of doing something for himself.

Ben giggles quite a bit when he stands at the sink and looks in the mirror. 
This is one such morning while he was getting ready for school. 

2. Safety. The old bathroom is 40 square feet - fine as a bathroom for a typical person, but a nightmare for someone with special needs. We had to do a lot more lifting to get Ben on the toilet, into the tub and out of the tub. Even though he has the skills to do these things with assistance, there was just no room to allow him to do so.

I hurt my shoulder badly in May from lifting Ben onto the Blue Wave toilet. It was a matter of time before someone else hurt themselves lifting Ben in and out of the tub.We have been lucky.

The space in the new bathroom allows Ben to step in and out of the tub, stand at the counter for dressing and washing his hands.

3. Time. Ben sometimes needs extra time on the toilet. In the past, we had to rush him or tell the brothers to wait. We now have both bathrooms and everyone can come and go as they please.

4. Storage. Ben has a few extra items that need to be used on a regular basis in the bathroom. With the storage space, these items are at our disposal. The old bathroom did not allow for that and we had to run around to different rooms to get what we needed.

5. Ben Proof - Ben loves to chew on toilet paper and shower curtains. The new bathroom has no shower curtain and the toilet paper can be easily moved to another location. Does not sound like a big deal - but when you have to Ben proof the bathroom every time he used it, the task got tedious.

When I made this list, I was floored by what it took for this bathroom to be built: 21 organizations, more than 75 people and at least $50,000 in time and materials donated. Mike Waite with NARI Charlotte, Mark Wasserman with Rebuilding Together Charlotte and Eddie DeRhodes of DeRhodes Construction lead this project with the support of these companies, their staff and subcontractors:

Aldred Electric

ABS Insulation

All About the Pipes

Andrew Roby

Barefoot & Co. 

Bedford Falls Builders

DeRhodes Construction

DiFabion Remodeling 


Harkey Tile & Stone


Master Craft Creations

Quality Comfort

Queen City Lumber

Red Rooster Contracting

Roby Electric

Southend Home Improvement

Summit Insurance

WAC Contracting

Every single person that came to our house was genuinely happy to help. Sometimes, they asked about Ben or shared a story about someone in their family with special needs. In one case, we made a connection and I was able to share educational resources with the family. 

This was a great experience for us, and we are thankful and appreciative to the people who were willing to help with this huge project. 

Tuesday, October 20, 2015

We Have The Torch

If you remember, we participated in the Special Olympics Unified Relay Across America on June 4. It was an incredible experience - one our whole family still talks about whenever we are on that patch of road. We were a part of Special Olympics history and the memory of it was a good one.

Last week, we were given the actual torch we carried on our half mile walk! If you live in our area and want to use it for school show and tell or an educational workshop, let me know. We want to lend it out to groups.

Wednesday, October 14, 2015

Monday, October 12, 2015

Wednesday, September 30, 2015

Purchasing Power

When Ben's new teacher in middle school texted me to see if it was okay for Ben to go to the book fair, I wrote back, "Sure."

After a moment, I realized Ben had never been to a book fair, at least that I could recollect. I wrote the teacher again and told her that this was Ben's first opportunity to shop the book fair. 
I was so proud of Ben when he came home with a book and a poster. We recently made some changes to his room and he had a blank wall above his bed - I guess he saw the need to fix that! The poster was a perfect fit. Ryan insists that Ben was trying to tell us something other than he needs more decoration in his room, but I am not touching that one.

Tuesday, September 29, 2015

Tuesday, September 8, 2015

Spreading My Wings

Last spring, Charlotte Parent offered me the opportunity to start a blog focused on helping families raising a child with special needs. The magazine launched a new website in August, and Special Attention was born.

You can now follow me at Twitter and Instagram.

And if you are keeping count, Happy 6 Years to eSpecially Ben.

Thank you for your support.

Friday, August 28, 2015

2015 Special Olympics World Games Viewing Party

Rowdy bunch at Kickstand Burger Bar. 

When I realized we could watch the Opening Ceremony for the 2015 Special Olympics World Games on ESPN, I thought PARTY! Our state office for Special Olympics got on board and helped us promote the event at Kickstand Burger Bar.

40 of us attended - athletes, coaches, volunteers and families! We gave out prizes, cheered for the athletes and made new friends.

A highlight for me was seeing one of Ben's former classmates from many years ago and finding out she and Ben will be in the same class for middle school.

Ted and John. John is a two time Special Olympics World Games athlete.
He ran the 1/2 marathon in New Haven and Dublin.

Special Olympics launched a new program on the eve of the Opening Ceremony: Change the Game.
It is powerful, straight forward and comes at the right time. ESPN's coverage of the Special Olympic World Games is a first. Robin Roberts' interviews of athletes is unprecedented. The athletes are getting the deserved recognition, sharing their amazing stories and breaking down barriers around the world.

Many of our family and friends came out Saturday night for the viewing party. I might have flown away from sheer joy. Having their support and love makes it all a bit easier.

* This should have posted a month ago...

Thursday, August 27, 2015

When Therapy Moves

Ben sits in his favorite booth at the cafe. 
During the summer we have the luxury of doing something different for therapy. We meet at local fun places like the coffee shop, library or kids' museums. Meeting somewhere new offers Ben a place to try out different skills with alternative toys and equipment choices.

Ben tries to do some cooking in the cafe's kitchen

Ben gets the ring off his head, but his attention is on the rock wall.
The OT asked Ben if he wants to try it, but so far he is satisfied with watching.

Ben crawls on all fours.

Logan dons the body part vest and provides comic relief.

Saturday, August 15, 2015

A Word from Joey

I have lost all sense of time, but I think Joey has been working with Ben for almost three years. He came to us after a string of horrible (I mean really scary) staff experiences. Joey came highly recommended by two different friends. It turned out I had met him a few years ago at a retreat.

Joey is a man who wears many hats - traveler, writer, graduate student, youth pastor, caregiver, volunteer, delivery man and probably a few I have left out. Joey wrote this article for the Baptist Pacifist FellowshipCrossing Borders: My Experience with People with Different Abilities. He tells a bit about Ben and also gives parents of typically developing children some tips for how to approach children with special needs.

Tuesday, August 4, 2015

Welcome Back Athletes!

Allison Douglas - Equestrian

Four North Carolina Special Olympic athletes attended the 2015 World Games in LA. They competed against athletes from all around the world. Their medals acknowledge their victory in the games, but symbolize much more. 

A group of us went to the airport to welcome the athletes back from the games. They were ready for hugs, photos and media interviews. 

If you have free time to devote to a positive and uplifting activity, please read the articles below. The stories about the athletes and the programs are inspiring. Reader be aware, they are life-changing. 

Starr Kluttz - Aquatics
Katie Degnan - Tennis