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