Monday, March 21, 2011

Note to Clark

Clark gets so sad when I go out of town even though the house will be full of family. He follows me around telling me that he loves me and he will miss me and that he is sad and is going to cry. I decided to write him a note. He'll like it.

Saturday, March 19, 2011

"Let me tell."

A couple of months ago a friend gave us a large stack of discs with every episode of Green Acres. It aired from 1965-1971, my college and early marriage years—a time when I watched very little television. I was aware of the show but it was one I would not have chosen to watch so when we received all episodes as a gift I said to my family “Count me out. You can watch it when I am not at home.” That day soon came when the rest of the family watched episode after episode in one sitting. I returned home later in the evening and was told by an enthused foursome that I should give the show a try while they laughed together telling me the funny things that happened. “Okay,” I thought “I will watch one episode. That’s all.” That was 108 episodes ago. I am hooked. When I read a review of the series that said it appealed not only to adults but to children because of its silliness and slapstick, I thought “That’s me. I have always liked I Love Lucy.” So, most nights you will find us laughing together as we watch an episode or two. What a great way to end the day (besides reading in bed before the light is turned off).

Last night Paul had some things to do at his desk so the rest of us went downstairs to watch two episodes. This morning around the kitchen table while we ate breakfast, we talked about Green Acres. Phil waved his arm in the air “Let me tell. Let me tell.” so we let him tell what he could while we all chimed in laughing and adding details, almost enjoying it more in the retelling.

Tuesday, March 15, 2011

The Special Breakfast

I was up early for a Saturday morning and at my desk. Later in the morning I would be involved in a service project and I had some things I needed to accomplish before I left. I could smell something cooking downstairs. Hey, I thought I was the only one awake that early. I went downstairs to investigate. There was Clark decked out in his apron cooking Spam. The toaster was out and the eggs he was going to fry. His concept of time is a little weak. I told him it would be a while until everyone was awake and ready to eat breakfast. Besides Paul and I would want to take a long walk. So, the griddle was unplugged. Soon the house came to life and we took our walk. When we entered the house almost an hour later there was a slight burn smell in the air. Clark had recooked the Spam and fried up a carton of 18 eggs that could have passed for miniature Frisbees. We all praised him for making breakfast and sat down for a memorable breakfast. Not one unkind comment was made about the rubberized eggs or the Spam that required a steak knife. Clark sawing his Spam.

Monday, March 14, 2011

Errands with Clark

Clark was out of spending money so that would be one of our errands—first to the bank to deposit checks for me and to get money for Clark out of his account, then to the library to pick up a book which I had placed on hold and finally to the post office to mail two packages. It would take about an hour with travel time and should be a fun time with just Clark. I was hoping it would also break his perseveration. All morning he had been talking to me about a motor home he wants to buy when he has enough money. It was a one-sided conversation on a topic which has been popular for a few years. I did not anticipate problems as we pulled out of the garage but we encountered a major one as soon as we tried to use the ATM machine at the bank. I let Clark put in his card and then I punched in his pin number. I checked his balance and decided to take money out of his checking account. I punched in the amount. The machine commanded me to take the money. The door opened and closed, opened and closed but no money appeared. The camera would show Clark and me bent over to better examine the door and leaving with nothing. We went in the bank and explained the situation to three individuals. There would have to be an internal investigation. Clark left empty handed. Now he had something new to perseverate about, plus anxiety, plus something new and unpleasant outside the norm. His knuckles were white, his brow was furrowed. I was glad to get out of the van alone to mail the packages. When I returned to the van I turned on music which silenced him. A few days later the money was put back in his account but today a letter arrived informing us that the bank needed time to perform their investigation. I am not telling Clark.

Friday, March 4, 2011

Phil's Assistant

Before nieces and nephews started arriving on the scene almost seven years ago Paul and I wondered how Clark and Phil would handle them. Would they be patient and gentle? Would they know what to do if one of them did something wrong? What if a situation required a judgment call (a toddler goes outside by herself when no one else notices), what would they do? Very few concerns have materialized. Most of the time we are amazed at how well they both do. Clark has more patience than most of us when trying to calm a crying baby and is willing to walk around or rock one for a long time. One day last year we were able to capture on video a sweet situation. I had asked Phil to take everything out of the “can cupboard” in the kitchen so I could wipe down the shelves and reorganize. Here is what happened.

video

Tuesday, March 1, 2011

Our Annual Fragile X Conference

Why is it that sometimes it is so hard to organize your thoughts to put on paper and so you keep procrastinating? Such has been the case for me for the past few days. We (Fragile X Association of Washington State) had a very successful annual fragile X conference on Saturday and there is much I want to share concerning two amazing sons. Phil’s excitement for the conference was evident many weeks ago. Clark wasn’t sure he wanted to go because he remembered the seizures he had at last year’s conference. He had had a few seizures recently so I was pretty sure he would be okay and he was. I had boxes of things to take—books, pamphlets, pictures, videos, items for the continental breakfast, banner, large poster, and more. Clark and Phil carried everything downstairs in our house, put it all in the back of the van, hauled it in at Children’s where the conference was held, helped set up, and then at the end of the day took everything down, put it in the back of the van, took it into our house and upstairs. Now it is up to me to get it all put away. They passed out papers to attendees and showed families with young children what adults with fragile X look like and how they behave. I sat in the front row since I was introducing our keynote speaker, Marcia Braden*, so Phil sat there also, at least for part of the time. He was typical Phil—up, down, up down. Clark preferred sitting in back with his father. At the end of the day I asked Phil what he liked best. “Lunch!” he answered with a smile.

*"Dr. Braden is the most experienced psychologist in the field of Fragile X that I know. She has seen patients for over 20 years and her behavioral and academic programs have made a wonderful difference for the children she treats.” Dr. Randi Hagerman, M.D. – Medical Director of the M.I.N.D. Institute (She was our keynote speaker last year.)