eSpecially Ben

Finally, after two years, I got my act together and organized swim lessons for Ben with an instructor at the pool we have joined the past few summers. I saw her two summer agos working with a child with special needs, even got her phone number, but never made the contact until this year. Of course, when we showed up for the first lesson, Kathy already knew Ben from school and knew that he was a stubborn one. (That kid sure gets around.) The lesson in the video above is his fourth and final one for the summer and the growth in his abilities is remarkable. The biggest change she made was taking off his life vest and putting on a three-block flotation belt . It made Ben use more of his own body to swim and also gave him the freedom to move more easily through the water. With such success, we are implementing some of Kathy's ideas in Ben's weekly physical therapy in the pool and talking with the YMCA about finding an instructor that can work with Ben on a regular basis.

Dr. Kilbane was one of the doctors I interviewed for the nutrition article for Charlotte Parent. In order to reach more families at a reasonable price she is offering webinars about nutrition.  Just in an hour phone conversation, I learned so much from her, so I can imagine a series of workshops would provide new and practical information for parents.  If you are interested, you have to act fast - they begin next week.  www.sheilakilbane.com More about Dr. Kilbane:  Charlotte Observer Article

In June, I was asked to write an article about nutrition and its effects on special needs children.  The article is out. This is the link: Charlotte Parents Exceptional Child's Article

The tune "Ding-Dong The Witch is Dead" from The Wizard of Oz rang through my head when I was introduced to Ben's new school speech therapist last week at Open House. It meant the old one was finally gone after three years of doing battle. I had given up on Ben receiving any type of formal speech therapy at school. The final straw came when I compared three years of IEP and progress notes and found that the therapist had copied word-for-word her comments every time. She changed nothing. From the beginning, Ben's response to her was to kick and bite. I never denied he did those things to her, but it let me know that something was not right and I had the IEP reflect that Ben could not be alone with this therapist. Luckily, Ben's teacher and principal supported what we were trying to do with the NOVA Chat and communication in the classroom. They did everything within their power to make sure Ben received services, but in many ways, their hands were tied. Ben was n...

AMBUCS is a wonderful organization, providing adaptive bicycles and tricycles for kids and adults with special needs. Ben is on his second tryke, and this one was a gift from his Aunt Olivia a few years ago. One of our biggest challenges in the past has been getting Ben to keep his hands on the handlebars, but he is now listening to our directions and holding on tight. We added a strap to help keep his chest in place and provide extra support. With assistance, Ben can ride up to five blocks now. When he gets tired, he starts to slump over. Holding his chest and body in place in addition to pedaling are hard work, but great exercise. Our goal is to get him to ride all the way to the playground after school to see his brothers. It is six or seven long blocks. I think it will be an accomplishment that will get lots of attention from other kids which is a great motivator for Ben. At the end of the day, like any kid, he likes to show-off. Joey, walking beside Ben, is one of our ...

Ready or not! Ben - 5th grade Logan - 4th grade Sean - 1st grade

Many parents with special needs children chart behavior, medicine and any other information they may need to know. Up until this June, I had only made note when Ben had seizure activity and this was at the request of the neurologist. I had made sad attempts to track his sleep in the past when it was haywire, but nothing was consistent because I was too tired to follow-through. I started this journey with a goal of a four week dairy elimination diet. Now we are on Day 60, tracking the following items: Seizure medicine changes Addition of allergy pill Addition of probiotic Bowel Movements Sleeping hours (including any naps) Dietary changes Cheating with diet changes We have learned so much from keeping this chart. As you can see from the photo, I did it "old school", on a paper calendar. I used pencil, pen and different colored highlighters to help things stand out.  These are a few areas in which I think charting may help: 1. It is a good reminder about t...

Ben's annual visit with the pediatrician was today. I was excited to tell her about all the changes and updates he has had in the past year. But before we could get in with the doctor, the nurse had to check Ben's height and weight. First, I was weighed. Then, I picked Ben up and we were weighed together. The nurse did the simple calculations and gave Ben a weight of 69.8. Huh?  That cannot be! He is 88lbs. Trying to wrap my head around yet another weight dilemma, I kept repeating those same lines about the impossibility of him only weighing 69 lbs.  So we did it again. I stepped on the scale without Ben, and then with Ben. The nurse checked to see if my feet were placed firmly on the scale and that Ben was not touching anything that could cause an inaccuracy.  Came back with 69.8 again.  Two thoughts raced through my head: Damn! I wrote a blog post about Ben weighing so much , and made such a big deal about his weight with friends and family. I even ...

When my longtime friend, Carla, strongly recommended Ben see a chiropractor during the period when he was not sleeping, I decided it would not hurt to try it. Luckily, the mother of one of Sean's classmates is a chiropractor, and I was able to get him an appointment with Neva Doctor .  At the first appointment, Ben was apprehensive but warmed to Neva quickly. By the second visit, Ben nearly jumped out of the car to get into the building. Once inside the room, he moved his foot pedals aside to get onto the table. To me, he clearly was enjoying the pressure Neva applied with her special tools. Her approach with Ben was gentle. She did not force him to do anything he did not want to do. She asked him if it was okay to massage his feet or face, and then she waited patiently to see if he responded positively. The goals of these chiropractic visits were to help Ben with sleep and breathing. Because we have introduced so many things during the same time period (no dairy, new medici...

Between the ages of two and four, most of Ben's therapies were at a clinic. I spent many hours with Logan hanging out in the waiting room while Ben did his thing with the therapist. It was not a favorite time of my life, but a highlight was meeting one other mom, named Shira, who also had a child with special needs who was also the same age as Ben. My first impression of Shira was one of awe. She had a laminated card system explaining her son, Cayden, to anyone who cared to know. It hung from his wheelchair and was brightly colored. Not only was she organized and informative, Shira was also approachable and friendly. Having someone to talk to during the office visit made the time go by much more quickly. After weeks of spending time in an old dark waiting room, we became friends. Now we do not see each other very often, but we have a bond through our children, shared experiences and respect for one another. I truly feel that if I needed something, I could call upon Shira. (...

Leave it to Kim, Ben's longtime caregiver and family friend, to catch Ben doing the chair trick and videotape it. It is not for the faint of heart, especially mothers or grandmothers. The camera jumps when it looks like Kim might have to prevent a spill. After witnessing this climb, Kim's recommendation was to leave the tray off the chair so that Ben could get in it properly without risking life and limb. Sounds like a good idea to me.

Early one morning, I found Ben sitting on top of the tray to his Rifton Hi-Lo Activity chair. Everyone was sleeping so there were no witnesses to this triumphant climb. Most of us were dumbfounded by this accomplishment. Often, I wish we had a "Benny Cam" to catch Ben's crazy antics and ninja-like moves on video. A person close to Ben was sure Ryan was playing a practical joke, and put Ben up there for me to find. I assured this person that my snoring husband was just as surprised as me. If not for my own ninja like reflexes with the camera, no one would have believed this story. My being believed superseded my worry for Ben falling. After some investigation, it became obvious that Ben had searched the fridge for food, left unwanted zucchini bread on the floor and when he did not find what he wanted, decided to wait in the dining room for someone to bring food. Ben has waited in the dining room numerous times, but always in a regular chair. He has been able to get...

Started the Day with a Birthday Donut. Train ride to Steak & Shake. Milkshakes all around. To he** with dairy free , it's my birthday! Perhaps wearing the hat is not one of the favorite things. Sean entertained us with pole dancing. Ended the day swimming with friends and family. If Ben looked a little dazed and confused, this birthday celebration was also day seven of his sleepless week.

After 34 days of mostly sleeping bliss, it came as a shock when Ben stopped sleeping. At first, I blamed cake and cookies, but when sugar was not part of his diet in the following days and sleep still alluded Ben, I panicked. Ryan and I went about our days in a hazy fog, hoping each night would bring sleep. More days would follow before we would find a solution. Kim, who works with Ben each day, saw our pain and looked up ways to help Ben fall asleep after hearing about YouTube videos by Heather Feather . I was a skeptic, but by the 5th or 6th night, I played Heather's crinkling paper video. Although I dozed off, Ben left the room unimpressed. Family and friends sympathized and offered their solutions. We tried essential oils, TV, no TV, melatonin, Benadryl, special music, walks around the block and feeding Ben right before sleep. Nothing worked. During the day, it was like Zombieland at our house. Ben was a wild man until 3am, but during the day, he was grouchy an...