eSpecially Ben

This week we are considering ordering a new walker for Ben because the one he has is too advanced for him. His school and private physical therapists are concerned that the pressure he is placing on his shoulders will cause serious side effects in the future. Ben also walks in a crouched position using this Kaye walker and his endurance is very low. The problem is that insurance will only pay for a new walker every three years. The decision made last February was a poor one. I have learned from this mistake - ask questions and get more people involved in the process before ordering an expensive piece of equipment. In an effort to outline all our options, I spoke with one of the representatives from the company who ordered the walker and she introduced me to an incredible organization:   Suzie's Closet I think I have mentioned before how amazed I am when parents raising special needs children start an agency or organization, write a book or open a business to help other...

  at the park. View other photos at  www.5minutesforspecialneeds.com

Any race following the Cooper River Bridge Run with all its fanfare, would be a hard act to follow. This Race was supported mainly by the neighborhood in which it is named for, Elizabeth. It was an early morning gathering of almost 700 runners of various ages. The course was very hilly. Personally, I felt it was more challenging than Cooper River because the hills never seemed to end. The nine year old boy playing the violin in front of his house was the highlight of the race for me. I was proud of him for having the confidence to do it. Other than this boy, it was mostly families on their front stoop quietly watching us run by. A few groups were more lively, but they were drinking an orange liquid in champagne glasses. With nine minute miles, I came in 17th in my division. Not too shabby, but if I want to bring home a trophy, my best bet is to increase my age. The competition drops significantly.

Ben's camp during spring break put together this bulletin board, creating something new to add each day: butterflies, bees, ladybugs and chicks. See other works of art:  www.5minutesforspecialneeds.com

Ben has been in swim lessons since January. He can "monkey crawl" several feet on the side of the pool without any support, making it to the steps. He can "jump" into the water, going under, and float with some assistance. We are amazed by what he has learned in such a short amount of time because Ben has been in the water since he was a tiny tot, and we were never able to teach him any of these things. Ben's very special swim instructor, Charquita, moved last week to NY to take a job running an aquatic center. We will miss her gentle ways, her quick understanding of Ben's skills and her belief in Ben's abilities. We are sad to lose her, but at least three other people have jumped in to take her place. Ben is like a superstar at the Y pool and it seems that it is a privilege to work with him. At one point, I thought a fight might break out, but I quickly stepped in and said that everyone would have to take their turn working with my sweet child. Ok...

 This is Ben and a friend from the neighborhood watching "Bob the Builder." See more photos at www.5minutesforspecialneeds.com

My husband, Ryan, and I met in college in 1991, although we did not date until a few years later. Our first years of marriage were spent renovating an 80 year old home in a precarious "arts district". And when I say renovate, I mean we did all the work and lived in two rooms in the house for five years. We both had full-time jobs too. We had no kitchen or central heat or air conditioning for at least two years. To say the stress of it all was horrendous is not giving you an accurate description. There were some good times, but it was difficult for me to live in carpentry filth, disorganized mess with uncompleted projects for that long. It took counseling to get us through it all. Although I would never put myself in that same position again, renovating the house ourselves allowed me to stay home with our children...which in so many ways turned out to be what we dearly needed when Ben arrived. Ryan and I were married 5 years when I g...

Artist: Ben, age 6 Made with a painted egg-shaped Styrofoam base, this penguin has felt arms, feet, nose and bow-tie. His googly eyes give him a sophisticated look. Check out more works of art: 5 Minutes for Special Needs

 If you live in the Charlotte area, this is a great event to attend. If you do not live here, it is a great event to copy for your region. Easter Seals UCP presents symposium on navigating mental health, developmental disabilities and substance abuse services in Mecklenburg County CHARLOTTE, NC (April 16, 2010) - - Easter Seals UCP (United Cerebral Palsy), a nonprofit serving children and adults with disabilities and mental health challenges, is holding an event to educate the community about various mental health, developmental disabilities and substance abuse programs and services available in Mecklenburg County  and how to navigate and gain access to these services.  The Mecklenburg County Service Delivery Symposium will be held on Saturday, April 24 from 10:00 a.m. – 2:00 p.m. at University of North Carolina at Charlotte (UNCC) in the College of Health and Human Service building, room 155 .  Grayce Crockett, Mecklenburg County mental health direc...

  AMBUCS is an organization that offers adapted tricycles for children with disabilities for free. These photos are of Ben on his first Amtryke -delivered in March 2006, when he was three years old. This tricycle did so many wonderful things for Ben. Sitting upright in the tricycle allowed him to get out of the stroller and see everything he'd been missing. It also required him to use his core muscles, helping to build strength. Ben looked his age by riding, and not sitting in a stroller or being carried. His "cool ride" brought independence to Ben for the first time. All tricycles are paid through donations from people around the nation. AMBUCS chapters raise money and awareness. If you are interested in donating, you may view the Wish Lists in two different ways: Wish List by State Wish List by Date Today I received a postcard from AMBUCS asking us to take action. The following words are taken verbatim from the postcard: AMBUCS was chosen this month...

 As part of my 12 Month Challenge , I ran the Cooper River Bridge Run on Saturday, March 27, 2010 in Charleston, SC with a good friend. This is my account of the experience. What a beautiful, fantastic, adrenaline-fused race . I have already contacted AAA about reserving a hotel room for next year. But at 4:30am, when the alarm went off, and even 15 minutes before start time, I swore I would never run this race again. EVER!   Image by www.islandphoto.com Then the race began and within seconds, I changed my mind. The excitement of being a part of 38,000+ runners was amazing. Helicopters circled overhead as race participants waved and hooted at them. Music was heard everywhere - from musicians on the side of the road to bands on rooftops. As we headed toward the top of the bridge, the helicopters still flew above us, but no one was waving back now. We were at a steep incline and all focus was on the goal. When I reached the top, I cheered, as did everyone else. It was...

Ben insisted on sitting in this kayak in our backyard. I told him 'no' the first time, but that did not stop him. Later I found out that Ben's baby brother sat in it this past weekend.  Ben just wanted his turn. See more photos at www.5minutesforspecialneeds.com

A few weeks ago I attended a workshop presented by a behavior therapist. As it turned out, I went to a conference on the same topic over a year ago. I will describe what I have taken away from these methods in my own words - but please take a look at the links I have provided below. After I learned about this, life with children made a lot more sense to me. Not that this is earth shattering material, but it helped me to better understand the hows, whats and whys of behavior in children, and occasionally husbands. I am in no way an expert in this - just a parent who wants to share a behavior strategy that has worked in our home. I hope to inspire others to explore it further.  Any errors in information comes from me and cannot be blamed on the presenters. Also, you may have seen ABA - Applied Behavior Analysis - connected most often with Autism - please do not let this deter you if your child is not autistic. I use these methods with all my children, none of which are labele...

Ben made this at school using a toilet paper tube as the base and then glued on a crayon-colored cut-out. See other works of art at: 5 Minutes for Special Needs .

Image taken from Tulane University More than a week ago, my husband noticed that Ben was falling forward. He banged his head badly on one of these occasions. I was away the weekend, but when I came back, Ryan showed me how Ben was drifting forward while sitting in the bathtub. That evening I emailed Ben's teacher to ask her if she had noticed anything. The next day, Ben's teacher called me to say that, in fact, she noticed Ben falling forward often. She and the assistant thought it could be an ear infection. I was able to get Ben in with a pediatrician that afternoon. I prayed it would be an ear infection. But life being what it is, of course it was not an ear infection. That would have been too easy. A curve ball was being sent our way. The pediatrician was a doctor whom we had not seen before. She was serious and focused. Ben's ears were fine, but she persisted with questions and was obviously concerned. While we waited in the office, she called Ben's neurolog...

I admit, this picture is a bit unsettling. Ben has been seeing the same pediatric dentist for 3 years. The office prefers that parents do not go into the exam room with their children - something about children acting up when parents are around. Anyway, I had given them permission to use the papoose three years ago - but had never seen it in action until this day at the dentist's office. Now I know why Ben gets glowing remarks on how well he behaves for the dentist - poor kid doesn't have a chance!

I get a report about Ben's progress almost 6 times a week from each of the therapists, after every session. Most of it is mundane information about what they did, how well the session went, how hard Ben worked, how hard Ben worked them, what equipment may need to be fixed, etc. But today, although the setting was the same and the speech therapist was giving his report as usual - he seemed to be saying something new. Or perhaps I was hearing it differently. Basically he said, Ben knows his name - he can identify it. There is no need to work on that goal. Well, I knew that from Ben's IEP meeting in January, but it was good to hear from an outside source that this was, in fact, true information. The speech therapist also said that Ben has met the goal to identify articles of clothing (shoes, socks, pants, shirt) from both pictures and actual items. Then he said Ben knows his numbers, 0-9. His next step was to help Ben learn his colors. The therapist said that when Ben pays a...

  Ben, age 6 I vote octopus because I like them better!