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Showing posts from July, 2013

While We Are Celebrating Anyway...

Ben has been practicing walking in the water  all summer long .  Here is a one-minute clip of him showing off his skills.

Overtaking the Decade Mark

10 Years Old! Celebrating with friends, cupcakes, past teachers, more cake, a little magic,  more friends, and one more homemade cake from Logan!

Happy Birthday to Ben!

Tomorrow is Ben's big day. He turns 10. Logan made this card for Ben. Here's his description in his own words: Ben is a big superhero float in a parade. Some people are playing the game, "Who is Cool?" and they are carrying cards to vote for Ben. Ben is holding the world because the world needs him.

Reduce, Reuse, Recycle!

A few months ago, our medical equipment representative offered us a wheelchair for Ben. Another family donated it to the company because their daughter outgrew it. Always ready to try something new for Ben, especially for free, I accepted the offer. We kept the chair for many weeks, but unfortunately it was too big for Ben and he always found a way to slide under the belt, leaving his body hanging and his neck in a choke hold. Although comical to watch Ben try to get out of the chair, I knew it was not going to work for him. I contacted several people to see if they knew of a family who could use the chair. I did not get any solid responses. Our friend, Celeste, at North Carolina Assistive Technology suggested we try the NC Exchange Post , a site like Craig's List, but specifically for equipment for disabled people. After posting the chair on the NC Exchange Post, we received a hit quickly. It was from a grandmother, Ellen*, needing a chair for her granddaughter, Adrian*.

Hands on the Wheel, Please!

An unexpected perk of having a ramp is that using Ben's tricycle just got a million times easier. The trike is bulky and heavy, making it cumbersome to get up and down stairs. With the ramp in place, it is easy peasy . Now, the trike is stored on the front porch, next to the ramp and is seen as another mode of transportation for Ben.  Ben understands the concept of pedaling - something we have worked on for many years. Now, his biggest difficulty is keeping his hands on the handlebars. We have blue tape wrapped around the bar to help him see where his hands need to be placed.  However, he does fight us, and we have to continually prompt him to use his hands. Ben's occupational therapist will do some work with him in the coming weeks. We may also try putting a textured tape or material on the handlebars to entice him to hold on. It was suggested to try the gloves that will keep his hands locked in place. Personally, I think this will anger and frustrate him. I would li

Ramp Photo Montage

Groundbreaking Ceremony - Logan made the first dig. Sean stepped in for a consult. Logan lent a hand when they got to a tough spot. Logan wondered what he got himself into. At times, three strong men were needed to remove branches. AJ did most of the heavy lifting. Without the expertise of Sean, I am not sure how this ramp would have turned out. Ben sat with his friend AJ to oversee the volunteers. AJ took a particularly close look at them with his binoculars. No nail went unhammered. Shoeless Ben managed from the sidelines.

Rainbow Express 2013

Ben attended Rainbow Express Camp again this year. Although I was not the person bringing him to camp, I was told that he was banging on the glass to get out of the car once he saw where he was going. One of Ben's mighty abilities is his memory. We do not go anywhere near this church during the year, but every year, without exception, he is clamoring to get in there. Matthews United Methodist Church's youth program coordinated the entire week. The teens in the program served as the camp counselors, and they worked their tails off all week making it Ben's favorite place to be. If Ben looks a little tired, he was. In addition to participating in a fun-filled day of camp from 9am-4pm, he had a summer cold too. When he was asked in the morning if he wanted to go to camp, he crawled to the door to get to the car. Ben's counselor, Tanner, sent photos to me during the week. I was actually away visiting family and it was so good to see Ben having a good time. It i

When It's Just Not Working

Since March, we have had a revolving door of staff working with Ben. Rather than discuss the gory details of each case, I decided to pass on what I learned from the experience. Having staff in our home is both a blessing and a curse. It is wonderful to have someone to help with Ben's personal care and independent skill building. It gives me a break and also helps Ben work on skills I may not have the time to do or are not skilled at teaching. However, it also means that there is a loss of privacy within our home. Feeling comfortable with the people who work with Ben is imperative to me. His safety is my first priority. It is not only what a staff person may or may not do, but it is the gut feeling I get when it does not feel right. I may not be able to put my finger on the problem, but that should not discount my feelings. These are a few things I have learned, and I would love for others to share any tips or ideas they have picked up through their own experiences. Trust yo

Ramp It Up!

Today, Love INC coordinated the building of a much needed ramp on our home. Elevation Church volunteers followed the lead of Steve Parrot, a carpenter from Eastern Hills Baptist Church  and within 3 hours completed the entire structure. Our ramp was one of 600 service projects during Love Week , an annual event for Elevation Church. Steve cannot give an exact count, but this ramp probably put him over the 200 mark for ramps built with his help. Words cannot express our gratitude. Although complete strangers came out to help us, they left as friends. There were promises of a BBQ/Stain the Ramp/Fall Get Together in September...I am already planning the date!

Respite at Cherith Cottage

Many months ago, I was told about a place Ryan and I could go for a weekend away. No charge, no hassles and meals included. Always the ever trusting and thrifty person, I tried to book a weekend in March, but it was already reserved. We finally scheduled a date for this past weekend, which worked out well because our 15th wedding anniversary is in just a few days. So what's the deal? Free lodging, food with no strings attached? Cannot be believed! Yup that's it. No 90 minute program on purchasing a time share, no recruitment into a religious cult and no scary dungeon with a dragon waiting to be fed two unsuspecting parents. The owners Jon and Paula, are parents to two grown sons. One son was born with dwarfism in the 1970's. Because their son had some special needs, their world expanded. They met parents who had children with disabilities, and they came to understand the stress and difficulties they faced each day. This led them to building a private cottage on the