Sunday, August 30, 2009

Bowling Has Begun

It is the middle of the night and I am at my desk. It is peaceful, a time for me to be more introspective and contemplative. Yesterday (Saturday) was a good day. Special Olympics bowling began two weeks ago and will continue until February. Once a week Clark and Phil take their bowling balls and shoes (an exciting Christmas gift a couple of years ago) and meet with peers to bowl three games. For years I was the taxi driver to all Special Olympics’ practices but now Cherlyn helps. Friday night she went camping so I drove yesterday morning. “Watch us?!” a question and a request so I did. Fortunately they bowled on lanes next to each other so I could stay seated and cheer them both on and also get 25 pages of a quick-read book read when neither was bowling. It is now a comfortable, familiar environment (it would not have been for me before I had children with mental retardation) of mostly adults, about 75, with a variety of disabilities, Down Syndrome, autism, undiagnosed, and, of course, my favorite, two very special fragile X men. “Men”—that is hard to believe. They are my boys. When younger friends tell me some of the cute things their small children do I am thinking about the cute things my boys do like when I read aloud to our family a short book we had received as a gift. There was a girl in the book named Daisy. When Phil heard that name he started singing “Daisy, Daisy Crockett.” We burst out laughing. “Put that in your journal.” More laughter. How does he know that song “Davey Crockett” and how does he come up with such funny comments? Life is good.

Tuesday, August 25, 2009

Fragile X Picnic

It was a warm summer day when we gathered for our (Fragile X Association of Washington State) picnic last Saturday. This annual event gives families an opportunity to associate with other fragile X families. Some have never met another family affected by fragile X and appreciate the opportunity to talk freely about challenges they face and also about the accomplishments. One single mom with two fragile X kids, both teenagers, asked when bedwetting would come to an end and what about puberty, what could she expect. There is a wide range of abilities just as there is in the general population but there are similarities that help parents see that they are not alone; there are others who understand.

Yesterday I went to see a granddaughter take a swimming lesson. The outdoor pool and constant smell of chlorine reminded me of my college years when I taught swimming. My mind wandered back many years to that small outdoor pool in a small town. I thought working at the pool was a perfect summer job. The instructors yesterday seemed to be enjoying their work. I watched mothers sitting together chatting while watching their children in the pool and toddlers who would very quickly take their older sibling’s place. We like to get together with others who understand our situation, what we are going through.

After almost four hours at the picnic it was time to go home. As I drove down the long driveway to leave with Clark and Phil (Paul had another commitment) I saw a mother chasing her teenage son with fragile X down the street. He had thrown off socks and shoes and was moving with speed. Instead of turning right to head home I turned left to try and help. Just as I pulled up alongside of her she had caught up to her son and had good hold of him. I was amazed at how collected she looked. She must have done that before. I smiled as I thought about the times when Phil got angry, got out of the car and proceeded to walk home while he peeled off coat, shirt, belt, shoes, socks. His younger sister, more than once, has gotten out of the car and followed him while gathering clothing. A long walk for him is usually therapeutic and by the time he arrives at home he has settled down. It has been a few years since he has done that and since that younger sister now has her own home I hope he doesn’t try it again.

Wednesday, August 19, 2009

The Quiet of the Night

It is 3:30 a.m. and I have been awake for over an hour. Instead of tossing and turning I have come to my desk. The house is peaceful and cool enough. It was 80 degrees in the study when I came in but I have opened a couple of windows and can feel the cool air lowering the inside temperature which is now 78. I have Pandora Radio on very quiet music (Josh Groban and Sarah Brightman are singing “The Prayer” right now) while I’m studying the scriptures and thinking. In a few hours one will be off to work, two others will be showering and getting ready to go to the doctor for checkups, another will be greeting the new day with a short walk to the stream and back and then will clean his bathroom (his Wednesday chore) before he showers, and me, I hope I will be asleep catching up on missed hours of sleep during the night. When I wake up during the night and realize I am not going to be going back to sleep I have mixed feelings. One part of me wants to be asleep while everyone else is and the other part remembers good feelings of being awake in a very quiet house where I can work at my desk without continual interruptions. A week ago as we were getting ready for bed Clark came in, as he does most nights, with his toothbrush which means he is out of toothpaste. He just stood there with his toothbrush not saying anything about it until I noticed. I have often accused Clark and Phil of snacking on toothpaste. How can they go through it so fast? A look in their bathroom shows that much goes into decorating the sink. One night Clark came in (without his toothbrush) to be with us and to talk (his daily word quota is much higher than mine). I just wanted quiet so I firmly told him to go to bed which took quite a few repeat commands as usual. On this particular night when he finally left I felt guilty. We are his world. I know he needs to go into his own room but I could be more patient, kinder. Kids, whether they are three or thirty eight, need what we sometimes don’t give them because our lives are busy and hectic. There are interruptions and many reminders and deadlines and appointments and meals and cleaning and repairing and shopping and…. I need to feel guilty at times so I can evaluate how I am doing and resolve to try harder. It works for a while. Now I am going to think about going back to bed. It has been good, these two and one half hours.

Sunday, August 16, 2009

My Two Assistants

It has been a good week. On Wednesday, in light mist, I left the house at 9:00 a.m. with my two assistants, Clark and Phil. We had to be in Tacoma by 10:00. The Fragile X Association of Washington State was asked, along with a few other organizations, to set up a booth at a Tacoma Housing Authority project. The property manager has a son with fragile X and she wanted us there. There was a ribbon cutting for the second phase of a large housing development, Salishan. One of our U.S. senators, Patty Murray, spoke, as did Norm Dicks, a representative. I like taking Clark and Phil with me since they are always helpful in carrying “stuff” for our display. We were there almost four hours talking to a few people who stopped by. Clark and Phil spent most of the time sitting behind the table being agreeable. That is not always the case, like this morning. We picked up a woman for church whose husband is in the National Guard. He was gone this weekend so she needed a ride. On the way home there was much arguing coming from the back seat. “Don’t say that Philip. I’m telling Bishop McCann.” Laughter from Philip. “I’m telling.” More laughter. I can’t even remember what started it. Our rider thought it was funny but I wanted them to stop. I am sure when Paul and I are ninety and going to church the conversation will sound much the same from the backseat passengers who will then be sixty-six and sixty. Now that is a sight that makes me want to laugh.

Sunday, August 9, 2009

A Great Summer Day

In my opinion there is no better way to spend a summer day than watching your kids play softball and yesterday was the regional softball competition. It doesn’t really matter that our team (with both Clark and Phil on it) lost both games and will not be going to state. We got to be outside for hours in 70 degree weather sitting in our Coleman camping chairs cheering not just for our boys but for Nathan and William and Nate and David and all the others on the Screaming Eagles who actually played quite well. I asked Phil if he thought their team played as well as the Mariners and without hesitating he said “yes!” I love that innocence, confidence and perspective.

I read in the news that Eunice Kennedy Shriver is in the hospital. She is credited with starting Special Olympics back in the ‘60s. I had no idea the impact it would have on my life. The online Wikipedia says

“The first International Special Olympics Games were held in Chicago in 1968. Anne McGlone Burke, a physical education teacher with the Chicago Park District, began with the idea for a one-time Olympic-style athletic competition for people with special needs. Burke then approached Eunice Kennedy Shriver, head of the Joseph P. Kennedy Jr. Foundation, to fund the event. Shriver encouraged Burke to expand on the idea and the JPK Foundation provided a grant of $25,000. More than 1,000 athletes from across the United States and Canada participated. At the Games, Shriver announced the formation of Special Olympics. Shriver’s sister, the late Rosemary Kennedy, had an intellectual disability and is often credited as Shriver's inspiration to help grow the Special Olympics.

In June 1962, Eunice Kennedy Shriver started a day camp, known as Camp Shriver, for children with intellectual disabilities at her home in Potomac, Maryland. Using Camp Shriver as an example, Shriver promoted the concept of involvement in physical activity and competition opportunities for people with intellectual disabilities. Camp Shriver became an annual event, and the Kennedy Foundation (of which Shriver was Executive Vice President) gave grants to universities, recreation departments and community centers to hold similar camps.”

I will be forever grateful for that wonderful organization.

Monday, August 3, 2009

I did it.

I wore one of the necklaces to church and even though I wasn’t looking for comments I got two. A six-year old boy wanted to know how I would take off the necklace (I showed him by stretching it out) and another comment came from a woman who said as I passed by her “I’ll bet that was made with a lot of love.” She was right. I know Clark and Phil love me. Clark tells me numerous times a day and I can tell by the way Phil says “Good morning Sweetness” that he loves me.

Saturday, August 1, 2009

Teen Club

When Clark and Phil were in their teens there was an after-school program run by the Seattle Parks Department called “Teen Club” that was held once a week at our local high school. They were brought home after on the little yellow school bus. Once they graduated from high school and were through with the transition program (18-21 years old) they were through with teen club. It was a safe environment with adult supervision, with opportunities in leadership and involvement with their peers in playing games. There are sad moments in life when something good comes to an end and you see your little boys (disguised in men’s bodies) move into a new phase of sporadic employment in a competitive world. Imagine my joy when I opened a pamphlet from our neighborhood community center advertising classes and swimming lessons and there was a weekly class (TNT) from 10:30-1:00 for adults with disabilities. I don’t even know what the initials stand for but it doesn’t matter because Clark and Phil call it Teen Club. It is that same safe environment with adult supervision, with opportunities in leadership and involvement with their peers. This coming Tuesday they will watch a movie and then eat their sack lunches together. There is no longer the little yellow school bus to bring them home but that’s okay because it is less than ½ mile from our house to the community center and they can walk to and from but rarely together. Phil likes to be there 30 minutes early so he can help set up tables and chairs and Clark likes to beat Phil home afterwards even though I have to continually remind them “It is not a race.”
Last Tuesday was craft day. They strung beads and made necklaces and I was the recipient of all three—two from Phil and one from Clark. I put on all three even though the heat in the house was at least 90 degrees. As I was dreaming about our “Toy House” and how perfect these necklaces would be for dress up for little visitors I heard Phil say something about wearing them to church. They have been on my desk for the past four days reminding me of the sweet moments of each day with my boys.