eSpecially Ben

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 My being believed superseded my worry for Ben falling.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...

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...