eSpecially Ben

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 had my fath

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

If you have been following closely, you will know that we have been experimenting with Ben's nutrition in hopes to eliminate constipation, decrease hyperactivity at night and increase sleep productivity. In addition to Ben's nighttime antics, he started about a month ago, tearing off his pull-up, typically leaving a horrible mess of pull-up pieces everywhere. In my last post, The Real Houdini, I admitted that, we as parents, had lost that battle. But it is the war we are after and Ryan, in his infinite wisdom suggested that the reason for the pull-up disappearing act was that they were too tight. I had my doubts, but being of a gender with different parts, I did not have much experience in this department and found it hard to argue. With no other solutions on the forefront, I picked up larger pull-ups, adult size small.  It has been five nights with the new pull-up and it has remained on his body each night. We both get points - Ben for communicating his discomfort

Ben's sleeping has improved quite a bit with the recent changes in diet. His hyperactivity has all but disappeared. The last behavior still to remain is his obsession with taking off his clothes and pull-up.    We have become creative in our methods to beat Ben in this "game." For awhile, we were letting him sleep naked, but he had accidents frequently, waking him in the night, so we stopped. Then, we tried long pants, underwear over the pull-up, long johns and shorts, buttoned shorts and the latest, drawstring tied tightly inside shorts; my husband's mastermind.  Two night ago, we used the drawstring method and left Ben in his room. Minutes later, he crawled out butt naked. He had untied the shorts and pulled everything off.  Last night, with experience under my belt, I double knotted the shorts and put him to bed.  I have 30 years on this kid, I can beat him at this game and besides, no one beats a double knot.  Minutes later, Ben came out, dressed.

Last week, Ryan and Ben were on their own. I took the other two boys to visit family while Ryan worked and Ben attended Rainbow Camp. Several weeks prior, Ryan was invited to a departmental team building event for his work - attending an evening Charlotte Knights Baseball game at the new stadium. Since family members were invited to attend, Ryan wanted to take Ben to the game. However, handicap seating is only in certain areas and it would mean he would sit away from the other 50 co-workers - making the idea of a team builder null and void. Ryan struggled with this for a few weeks. I lined up someone to stay with Ben, thinking the decision had been made for Ryan to go alone. One day, Ryan called me from work, excited and relieved. He had a meeting with his two supervisors, and at the end of the meeting he shared his dilemma with them about the baseball game and seating arrangements needed for Ben. Within hours, the seats for the game were changed to include the handicap section f

Ben may have been asleep in the car minutes before he got to camp, but once he awoke and realized where he was, his excitement was visible. Rainbow Camp is part fun, part spiritual activities, but mostly about forming bonds and friendships with other campers, buddies and counselors. Hugs are abundant at this camp. This year, during their week of training, the counselors watched as a few of the parents of the campers talked about their child, the best ways to work with their child and finally, what Rainbow Camp means to their family in a video. Below is the video of me speaking about these things. I was lucky to have some help from Ryan, a family friend. Elizabeth, Ben's former teacher and now our family friend never misses a chance to give Ben a hug. Each day, a team of youth counselors create a puppet show for the group. Singing and dancing are always part of the fun. Play the game, "Where's Ben?"

Today we visited Ben's new neurologist, Dr. G. Ben's former neurologist, Dr. N, retired. For eight years, she developed plans for Ben's seizures, sleep issues, genetic testing and then tracked his progress with communication and cognitive abilities. Although she mostly used words that went over my head, she spent time with us, listening about developments and asking questions. We were never rushed and Dr. N was always precise and direct. At times, I wanted to remind her that Ben was not a toddler anymore and baby talk was no longer necessary, but even still, Dr. N was a hard act to follow. As with any doctor visit, the patient must be weighed. This office had a cool roll-on scale for a wheelchair. This saved me the lovely ordeal of holding Ben and getting weighed together, and then stepping back on for a solo weigh. This time, Ben's chair was weighed separately. The scale read 105 lbs for the chair and Ben. This confused me, but I had little time to contemplate beca

When I researched nutrition for the Charlotte Parent article, I interviewed Dr. Sheila Kilbane. The information Dr. Kilbane shared with me helped to transform Ben's diet. Over the past few weeks we have kept in contact through email. She offered to share some of her posts, resources and knowledge with eSpeciallyBen readers.  The title to her first post is misleading - it is not just about pediasure. Take a look at it even if you are not a pediasure user. I promise that you will learn something new. Is there a natural alternative to pediasure? Mini Med School Ask the Doc Anything

We are in week three of Ben's dairy free diet. There are mostly positive results with constipation being relieved by the addition of a daily probiotic and the spinach and chia seeds added to his smoothie. Ben seems to be eating more solid foods because he is not filled up with milk.  My skepticism about milk affecting Ben's sleeping and hyperactivity in the evenings is still there. I am tracking it and will be able to see patterns after a few more weeks.  I do not intend on adding dairy back into his diet at the four week mark. I think more time is needed to make a decision about dairy being connected to his sleep and craziness at night.  It has been easy to make these changes in diet. Most stores, even the ones not known for their organic and expensive products, like Target, Aldi and Food Lion carry almond milk. The coconut yogurt (yogurt made from coconuts) and chia seeds is available at a grocery store that carries a large variety of food choices. Spinach is available

Rainbow Camp is an annual camp sponsored by a local church.  This is a photo with Ben's counselor and buddy on the very first day. The buddy is Ally and she is the same age as Ben. The counselor, Jacob, is a member of the youth group at the church. He participated in a week long training before serving as Ben's buddy. I will share more as the week goes on. 

In late spring, I purchased a new pair of running shoes. While at the store, I noticed a flyer publicizing an upcoming running series. Each Tuesday during the month of June, at a nearby high school, this running company sponsored 50 meter, 100 meter, 400 meter, 400 meter relay and 1 mile races.  Thinking this may be a fun way to introduce Logan to running, we agreed to go the first night and check it out. As a last minute thought, I called the running store that afternoon and asked if they would allow a wheelchair runner. The woman who answered the phone thought it would be fine. Juliana is one of Ben's direct care providers, and I did not tell her about our plans beforehand. She is a go-with-the-flow kind of person and I was not sure what to expect, so when she arrived at our house in running attire, I knew something in the cosmic sphere was working in our favor. Juliana, in the year and a half she has worked with our family, has never showed up in running clothes. When I fille

About three days after I stopped the Benadryl, and continued "detoxing" Ben from all his sleep aids, Michele Huggins, the editor at Charlotte Parent Magazine , emailed me about writing an article about the benefits of nutrition on special needs children for their September issue of Exceptional Child . I agreed immediately, excited that she would ask me to write again for the magazine. I knew nothing about nutrition for special needs children except for a few buzzwords like gluten-free and, well... that's it. Two days later, armed with articles and research about nutrition, information from interviews with nutritionists, doctors and families with success stories, I decided to launch Ben on a four week Casein Elimination Diet. You will have to wait for my article to publish to find out all I learned, but what I will share is that I was a HUGE skeptic before I started my research. The time, money and energy were enough for me to say "no" to any change in di

About three months ago, Ben stopped responding to his usual sleep regimen of 5 mg of melatonin at 7pm and a prescribed sleeping pill called Doxepin, at 11pm. He was wild with energy until midnight, crawling around the house, throwing Logan out of his bed, visiting different couches and cackling at his favorite artwork in the house. He was a wired mess and on many nights took off his clothes and pull-up, opened the fridge and pulled out foods to make a smoothie. With the okay of the doctor, I increased the dosage on both the melatonin and Doxepin. It made no difference. I added herbal teas that promoted sleep, even trying different brands in hope to find one to do the trick. Nothing worked. We were at our wits end. I decided a detox was needed. No more melatonin, no more Doxepin. When I remembered, I gave him a tea, but that did not seem to have a huge effect on him, except adding to fluid that needed handling, if you get my drift. After about two more weeks of this crazy behavi

It was March 2013 when I started the process to build a bathroom for Ben. After much heartache and tears, a few wonderful people stepped in to help me with the process. Through their contacts and persistence, they found sponsors. Although I do not have many details, I do know that a few key Charlotte organizations are coming together to build Ben an accessible bathroom. There will be a fundraising event in the fall. As soon as I know more information, I will share. Deep breath. Relax. Repeat.

Summer hit fast and furious. It is finding time to write and not lack of material that is the challenge.  The stories and lessons learned every day are limitless.  Must follow my motto: sleep first, then write.

We visited the NC Transportation Museum to see part of an exhibit with famous trains from all over the country. While there, I saw an older, almost elderly, man and woman pushing three wheelchaired adults. What I noticed lead me to several questions and many conclusions: It was an obvious struggle for them, especially the woman who was pushing one wheelchair. I assumed this was a group home on an outing. I also saw that one chair did not have foot rests. The person's feet were just dangling. I was glad the group home was out on a field trip, but I really thought they were understaffed and perhaps needed younger, more healthier looking personnel. It made me think of Ben's future and his care. My curiosity got the better of me. When Ben and I caught up to them, I said hello and acknowledged that they must have a hard time pushing three wheelchairs with just two of them. I asked the man how come they were short-staffed. He looked at me slowly, very slowly. He looked at the woman

My MP3 player started with Bieber and ended with the theme from Rocky. I was running a 5k race called, Lace Up Son , a play on former Carolina Panther's  Steve Smith's words to Aqib Talib, " Ice Up Son " , after a football game that left the New England Patriots on the losing side. About two weeks before the race, I heard Steve Smith on the local radio show discussing the race and his foundation, the Steve Smith Family Foundation . He made a point to say that the race and events afterward were family oriented and that a portion of the proceeds would go to support Special Olympics. There was something about how he talked about the race and his vision for it that made me want to go. At 6am on Memorial Day, the day of the 8:15am race in a town 30 minutes away, I was definitely thinking twice about what I had gotten us all into. The kids were snug in their beds, Ryan and I could have slept in late, instead, I dragged everyone to the car. No regrets from any of us n

Beginning in 3rd grade in NC, students take E nd  O f G rade tests for math, reading and additional subjects in upper elementary. For Ben and other children with special needs, they take a test called the NC Extend 1 . Ben was scheduled to take his over the next few days, depending on his cooperation and energy level. Minutes ago, I received a call from Ben's teacher telling me that Ben " rocked the EOGs ". She was able to get both reading and math sections completed with him. She saved the best for last: one portion of the test required Ben to read a section independently, then answer 3-4 questions. The proctor did not ever read the passage aloud. Ben answered all four questions correctly, each question had three choices. Unbelievable! We were uncertain about his reading skills, but this seems to prove that he is reading and comprehending. Sample NC Extend 1 from 2013 NC Extend Information Although they had the NOVA Chat ready to use for the testing, they did not

Ben was in the news tonight. Watch it here: Crowders Mountain Considers Building Accessible Trail

Ordering new equipment for Ben had been a fairly easy process in the past - contact a medical supply salesman to do a fitting and then a few months later, the delivery was made. Something happened with our past sales person, and Ben was neglected for the past year. For almost a year, Ben sat in a Convaid wheelchair that was way too small for him. Medicaid requires that you keep equipment for at least three years before ordering new, but had we known about this caveat - if the child grows quickly and cannot use it safely, then a doctor's letter will help get the equipment ordered before the three years, we would have pursued it. Ben's former Convaid chair was a 14" chair and Ben's hips were 14". Clearly, he was too large. His feet touched the ground, and he could almost stand up with it. The past salesman's family-run company was bought out by a large corporation with strict policies and goals. It is possible that this was the reason for the salesman's

Mr. Terry, the kids' Sunday School teacher and I drove to Landsford Canal State Park in South Carolina. It is one of my most favorite parks, and it is known for its Spider Lilies and Canal System. Although I knew that Mr. Terry was a wonderful photographer of people, I did not realize that his skills expanded to wildlife. I will take credit for spotting some of it. Here are a few of the shots he took while we were there:

In 2011, eSpeciallyBen won the Reader's Choice Award for  Favorite Special-Needs Parenting Blog . It was a great honor and a lot of fun. This year, About.com took a different route and decided to ask past award winners to share their favorite blogs, books and resources.  Since we are always looking for something new that might work for our own family, this was a great idea.  Take a look at these sites:   Expert's Choice Your Favorites Pick Their Favorites