eSpecially Ben

Remember when I last wrote about the Rifton Blue Wave Toilet , we were waiting for a donated one from another family? Well it did arrive - almost new, really. And within a few weeks, it mysteriously broke. And Ben landed on the floor of our bathroom. I was sure he hurt something with the way he landed. Ben was clearly puzzled by the look on his face. After the dust settled and I was sure no bones were protruding from Ben's legs, I started to panic. I rely on this toileting system and without one, life becomes more difficult. A plan of action formed in my head and the next day, I contacted Rifton and told them the story - the whole story - including that this toilet was a donation. I explained that a small piece had cracked. I was hoping to purchase the small piece that broke. Well, of course, they cannot sell me just the little piece, I have to buy the whole thing. The customer service person asked me if I wanted her to work up a price. Yes, I did want her to work up a price, a 

This is an addendum to last night's post. In my enthusiasm to solve Ben's sleeping problem, I gave him all his medication at 4pm, including the sleep aid. And like I said in my last post, he was sound asleep by 8pm. At 1:30am, he was bright eyed and bushy tailed and remained so until I sent him to school on the bus. We try again today. I still have high hopes...just need to administer the medication according to schedule. A lesson learned every day.

Today was the sleep consultation for Ben. I asked Ryan to go because he had information to add, but really I did not want to seem like a raving lunatic when I described Ben's sleep situation. I had nothing to worry about with this doctor -  he made no assumptions, asked many questions and walked us through options for Ben. The doctor admitted that Ben's sleep pattern was unusual and offered many explanations and possibilities. He spent 45 minutes with us and probably would have spent more if the kids (and me) had not gotten antsy. These are a few of the things I learned: 1. Sleeping pills have not been tested on children. It just has not been done. And they definitely have not been tested with children with special needs. I see a future in this area because so many parents deal with their child's insomnia on a regular basis and do not know what to do. 2. It is possible that when Ben was weaned off a seizure medicine called Clonazepam in May, we inadvertently, to

Sean has been testing my patience recently. The final straw was when he yelled that Daddy was in charge, not Mommy. Unfortunately or fortunately, Daddy was not around to eat this declaration up. As I was getting the boys ready for bed, I pulled Sean aside and explained that his Daddy and I were sad about his behavior lately. I asked him what he thought we could do to change it. His instant response, "You can use a wand." I was pretty sure what he meant, but asked anyway. He said I could use a wand to change things, and as he glanced around the room, he said that he was certain that we had one around here somewhere. Sean's in bed now, and I am looking everywhere for that darn wand.

Ben saw some kids at the park playing in a big pile of leaves.  Ben wanted to be a part of it all. They let him join in and even brought over more leaves for him to enjoy.

I just bought a new pill box, the one with the days of the week written on each small compartment. It has a button on either end - red to unlock the compartments and green to lock the compartments. As I was filling it and thinking about what a clever gadget it is, I stopped in my tracks and realized the reason I bought a new one was because Ben ripped open the other with his teeth. I just don't think the little button system will stop him from getting into this one. That will be a job for some engineer, making something Ben-proof.

At my parent teacher conference, Ben's new teacher shared a story about him. There is a girl in the class who is in a wheelchair, has very little movement and is completely non-verbal. Since the first day in class, Ben has been interested in her. He reaches for her hand, holds it and makes her smile. From what the teacher said, they have a bond; a friendship has formed. I know how special Ben is, about his ability to bring people together, but I was still struck by this story.  The teacher spoke about Ben's compassion. Have I ever considered this emotion in Ben? Had I thought him capable? How sensitive and thoughtful is the teacher to see this unfolding in the class and describe it with such love and caring? Once again, Ben has taught me something new.