I love Special Olympics

Whether it is bowling, softball or track and field I love Special Olympics. Clark and Phil are in the middle of the track and field season right now. They had their district meet last Saturday on a cool, overcast day at a local high school. Both won silver medals for relay races so now we are waiting to hear if this will qualify them for the state meet the last of May at Ft. Lewis, about an hour south of us.

When Clark started participating in Special Olympics about 25 years ago I would attend his meets and the tears would begin to flow. It was not because I felt sorry for the athletes but because of how hard they tried. Whether an athlete came in first or last it didn’t matter, each was a winner. Tears only come occasionally now but I do not stop being amazed at these special athletes who are not concerned about looks, clothes, breaking records, or endorsements. I have seen a young woman running the 100m and just about to cross the finish line in first place stop to help someone who fell. It cost her the race but I doubt if that ever crossed her mind. Someone fell and needed help. Another athlete at another meet was well behind all the runners when he fell. When he stood up he seemed disoriented and went back to the starting line where he began again, long after everyone in his heat had crossed the finish line. Everyone was cheering for him as he stumbled along and then he realized the cheers were for him and he smiled and continued on his way until he finished. These are the true heroes.

Clark and Phil’s main coach for all events is someone who has devoted her life to helping the handicapped. She had a group home until bad health stepped in but she has continued with Special Olympics, of course like everyone, as a volunteer. And there are other faithful volunteers who help Mary Ellen. The Special Olympics Oath is "Let me win. But if I cannot win, let me be brave in the attempt." Athletes and coaches alike are winners in my eyes.

Listening Takes Time

I am not always proud of my behavior. I had a lesson to prepare for last Thursday and four for this week (I have been teaching at the Institute of Religion across the street from the University of Washington since 2002) so while the house was relatively quiet, three out of five people gone for the morning, I decided to work at my desk. Clark had been anxious all morning and had had a couple of petit mal seizures and was generally not feeling well. We had been discussing his health all morning. We even took a mile walk where he talked a lot about how he was feeling. While I was at my desk Clark came in after his shower and started talking so periodically, while I was trying to read and prepare, I would say “uh huh”. Finally I decided to stop, look at Clark and let him talk. He talked with hardly a breath in between words for 30 minutes. I watched the clock which I could see in back of him with amazement. I maintained eye contact and would occasionally nod my head. I thought about my prayers where I had asked for help in knowing how to present these lessons. I wanted to know that God was listening to me and would help and yet I hadn’t been willing to really listen to Clark who stood six feet away, facing me, and looking me in the eye. I noticed during that 30 minutes that his face softened, there wasn’t much of the anxious look anymore nor talk about how yucky he was feeling. I was wondering how long this would go on when suddenly the screen saver started with family pictures which redirected his attention. Then the dryer stopped and he went to retrieve his jeans while I went downstairs and turned on the TV to Mister Rogers which he very happily went to watch.

Passport Time

We posted a free cedar bench two hours ago on Craigslist; then I took Clark, Phil and Cherlyn to the post office a few miles from our house to submit their forms for passports. When we returned I checked my email. There were 65 responses to our ad and now someone will come this evening to pick it up. Amazing! Craigslist—what a wonderful service.

Yesterday the same four as today went to the post office, circled the parking lot twice before finding a spot and then went in and stood in line for 30 minutes. Among other things, it gave us time to listen to the woman two in back of us reprimand and threaten her two boys who looked to be under ten and who kept laughing. I had a nice conversation with the woman directly in back of us about passports. We noticed which of the postal workers looked like they would rather be at home and yet still had two more hours of work. Finally it was our turn. Cherlyn was signaled to a side door. Two minutes later she emerged. We had social security cards, IDs, forms filled out with Passport pictures attached BUT we didn’t have the second picture. We walked outside into the rain and got in our van and went back home.

The sunshine today was a sign that all would go smoothly and we had our second pictures. We had our pick of a parking space. There were only two ahead of us in line. Our postal worker looked stern and slightly grumpy but wasn’t. In fact, he seemed to enjoy helping us and we needed it as we sorted through money so Clark and Phil could pay with cash. Since they can’t read I had to finish up the last of the paper work while Clark and Phil ordered each other to get out of the way so they could get up to the counter. My writing was interrupted a few times so I could remind them to be quiet. Fortunately Cherlyn and Clark finished just as Clark started into a petit mal seizure. I held his hand and talked quietly to him before asking Cherlyn to take him to the van. By the time I got there all was well. As we sat around the kitchen table for dinner Phil said enthusiastically “That was kind of fun” and I agree.

Happy Easter

Yesterday when I went to the store the clerk wished me a Happy Easter. I liked that but it also caused me to think about what she meant. For many Merry Christmas means “I hope Santa is good to you.” so Happy Easter probably means “I hope the Easter Bunny visits your house with eggs, candy and presents.” Through the years my sweetheart and I have tried to de-emphasize Santa but it is hard when you are in competition with the entire commercial world. When asked, Clark can tell you the real meaning of Christmas immediately but Phil needs a lot of hints. So what about Easter? We decorated eggs a few hours ago because Clark and Phil asked if we could. They loved it. They were excited when I joined them by writing “I love my eternal sweetheart, Clark, Sonny (Philip), Cherlyn” on an egg. They are the ones who still live at home. I just went downstairs to find out what they know about Easter. I said “Why do we celebrate Easter?” Philip told me he didn’t know and Clark already had his hand in the air. I told him just a minute until I finished with Phil. “Phil, when is Easter?” “Sunday.” “Good, so why do we celebrate it? “The Bunny? No, Jesus.” Actually, I was proud of him for at least knowing that Jesus has something to do with Easter. Then I called on Clark who spoke for about two minutes, giving details about Christ’s death on the cross, the tomb, the Resurrection, the apostles. They will search for hidden eggs tomorrow morning and then we will go to church to hear talks and music all about the Savior, the most important message any one of us could hear.

"Lint is calling you"

The laundry is my favorite household job but it hasn’t always been. In the olden days when our washer and dryer were behind closed doors in our kitchen/TV area it was more than a huge drudgery to get laundry for eight people from upstairs and then divide the clothes into piles in the kitchen area. In those days there were 1-3 in diapers at any one time. When our youngest was two and just going out of diapers we added on to our house and put a laundry room upstairs right next to our bedroom. Now I can lay in bed and listen to favorite sounds from the washer and dryer. In that room is a tub, washer and dryer, folding area, a place for my sewing machine to sit out (in case I ever decide to put a dent in the mending it will be more convenient), a pull-down ironing board, and shelves behind closed doors. My favorite shelves are open—eight of them, nine if you count the space under the bottom shelf. They are not quite two feet wide and about a foot deep. Each of the kids had a shelf. Without even moving I could fold the clothes on the counter and put clothes into the correct slot. No more having to nag kids to get their clothes off either the kitchen table downstairs or our bed upstairs. If they wanted to live out their slot they could do it. Now there are only three at home so some of the slots are used for other things. When my sweetheart and I go out of town for more than a few days, Philip takes over the laundry, without being asked, so that when we return there is a transition period until I am back with full responsibility for the laundry. After all, Phil has his own jobs. I still find him periodically starting a load or folding clothes. I let him know I appreciate him and his good work. As I was at the computer a while ago I could hear him calling “Mooooooooom, lint is calling you.” And I got up and went to the dryer where we talked briefly about the accumulation of lint (and how much fun it is to peel it off and throw it in the garbage), just as we have many times before. I really like doing laundry but I love interaction with my family even more.

When dreams don't come true

It’s a good thing all dreams don’t come true; I wouldn’t be raising two sons with fragile X if they did. Now, knowing what I do, some of my teenage dreams seem normal but very shallow. If I didn’t have Clark (the 38 year old) and Phil (the 32 year old) my journal wouldn’t include entries like this one when Phil turned 32 six months ago.

“Phil had a good 32nd birthday with tacos (his choice) and a heart cake with chocolate cake and white frosting and his name in M&M peanuts. Everyone (all six children, three spouses and four grandchildren) was here for the first time in a while. When it was time to sing "Happy Birthday" Phil told us to sing opera (the Happy Birthday song) and then he conducted--holding out some of the notes and having us sing louder. There was rambunctious, loud singing and laughter.”

Jumping in

I have decided to join the blogging world and to focus on two of my sons who are not any more special, nor any less special, than my four other children, but their mental retardation sets them apart.

As a teenager I made plans for my future after high school. I would go to college, graduate, get married and have children, lots of them, and I knew they would grow up to be college graduates and doctors and maybe even one would become president of the United States. I didn’t plan for children with fragile X (inherited mental retardation) because I didn’t know about the secret I carried inside, that I am a carrier.

That was many years ago when I made those plans. My two sons with fragile X are now 38 and 32, just young boys disguised in men’s bodies. It has been an amazing journey.
Fragile X syndrome is the most common cause of inherited mental retardation and yet most people I talk to have never heard of it. Approximately 1 in 3600 males are affected and 1 in 4000 to 6000 females. I had never heard of it until our family went to a genetics clinic to find out what caused mental retardation in two of our then five children. Another baby was born a year after our diagnosis.

Daniel Boone, an American pioneer and trailblazer, said “I can’t say I was ever lost, but I was bewildered once for three days.” My sweetheart and I were bewildered for much longer than three days, or even three years, but very much in love with all our children so that when the geneticist met with our family at the conclusion of testing and told us about fragile X syndrome some of our questions were answered. So there it was. The diagnosis helped us in understanding but there were still more questions that would slowly get answered through the years. I am still learning.