eSpecially Ben

In the course of working on purchasing new equipment for Ben, I made contact with someone who developed a list of funding sources for families. She would prefer not to be named - we will just call her Angel. Angel did this on her own, to help the families who do not have a way to pay for the equipment their children desperately need. If you know of others we can include on this list, please add in the comments section or email me directly. The web addresses and information have been checked as of today, October 24, 2014. Angels in Need Davidson, North Carolina Website: www.angelsinneed.org Phone: 704-607-5118 Coverage: Local & International Angels in Need is a 100% volunteer, 501(c)(3) non-profit public charity based in Davidson, North Carolina. It is our mission to serve children with special needs and their families both locally and abroad. Our goal is to enrich the lives of these children and families by supporting already existing programs and organiza...

I think I will start a resume for Ben - he's been in videos about Kindergarten readiness and literacy , and now, he is here modeling a special cut out desk. Who knows who might coming knocking next?   Duke Energy ran this story: Hydro Employee Uses Gift to Craft Furniture for Students Don Ligon builds desks for special-needs children. If you’ve never worked with special-needs children, it’s something you’ve probably never thought about. It had never crossed Don Ligon’s mind. But when a friend told him about how special-needs children require special desks and the problem she was having finding them for students in the Charlotte-Mecklenburg school system, he understood. And then Ligon had a light bulb moment. He was already involved with woodworking as a hobby and had made several pieces of furniture over the years. Why not build the desks for the children? Now, at least once every year, he delivers a batch of solid-oak desks for students. He’s built more than 150 over the...

Ben has his own Convaid Stroller now, and at the suggestion of his school physical therapist we added these "big wheels" to the order. These special wheels easily attach to the stroller without having to remove the smaller wheels. Ben's private PT is trying to teach Ben how to use the wheels, but his hands seem to get caught in the spokes. I also think they may be set too far back for his arms, although I have had Logan test it out and they seem to work fine. It is possible that if Ben sat up straight in the chair, he would have a better angle for propelling himself. Ben gets the concept and can move short distances, but his preference is to be pushed. No surprise there! The wheels are great for when we have long walks over rough terrain. They are much easier to push and provide a smoother ride for Ben. And then there's always that great smile...

On Palm Sunday, we arrived at church at our usual time to participate in Sunday School. I took Ben's walker out from the trunk. Ryan and I strapped Ben in with chest harness and seat. Ben made his way toward the door as his brothers ran around the garden amused by the bird bath with the stone bunny inside. I opened the door to the church for Ben. Without warning, Ben's walker folded onto itself, slamming Ben's face to the floor. Ben's nose took the brunt of the fall. He bled and cried. Then I cried. Our church community got ice, gave hugs and helped any way they could. Ben only wanted his Dad to hold him. Of course, things like this happen so quickly and when they do, the details are all in a haze. I do remember wondering, what just happened? How could the walker do that? And probably even quicker than the fall, the answer came to me: I did not engage the lock for the walker properly. Some people have told me not to feel bad or guilty, but I did. Ben's nose bl...

Here's another memory forever stuck in my brain - Tony Randall playing Felix in the show, The Odd Couple , when he is in court and, of course, acting as his own lawyer in some small traffic case. In his moment of triumph when the defendant uses the word, "assume", Felix breaks down the word for the court, "When you use the word assume, you make an ass out of you and me." Picture lots of swagger and finger pointing. Okay, where am I going with this? Somewhere, I hope. I assumed when we ordered the Rifton Toileting System for Ben that our insurance would cover it. I never gave it a second thought after all the paperwork was turned into the salesperson that this would come back with a denial. I was counting the weeks before Ben would have his brand new toilet. And instead, I received a letter of denial. This About.com contest has taken on a life of its own. The fight to be THE favorite has turned me into an emailing and messaging machine. I have even toyed w...

Ordering equipment for your child with special needs is time consuming, exhausting, stressful and full of ways to make big mistakes. Please learn from me - I have made those mistakes! 1. Work with others. School and private therapists are an invaluable resource. Use them all to make the decision. For whatever reason, we once ordered a walker for Ben without consulting other therapists and we made a big mistake. Ben was not ready for this walker and it sits in our attic right now. 2. Do not rush. I knew we had about 7 months to order three pieces of equipment for Ben in order to be in the insurance cycle for this year. I sent emails to the therapists letting them know that I wanted to order equipment for Ben. This started a dialogue with all the therapists. It took time to find a reputable company that took our insurance. Often these companies are understaffed, so make sure you can get the salesman to meet with you, be available for questions and be willing to come out to the sc...