22,000 games in 84 years

I remember the year I first saw the Harlem Globetrotters. They came to my high school with their antics, Curly and Meadowlark Lemon, and Sweet Georgia Brown blaring to fill all space in our high school/community gym. I laughed for two hours. I saw them for the second time yesterday. This time they came with Slingshot, Bingo and Special K and, of course, Sweet Georgia Brown blaring. I laughed for two hours at familiar antics and new routines. Phil, especially, loved it and showed it with his typical enthusiasm. And I could tell Clark liked it. Notice the slightly pleasant look on his face? It was a great family outing.

Phil with Slingshot and Bingo

The Journey

As I lay in bed this morning slowing waking up my eyes were drawn to a ceramic candle holder that sits atop a radio across from our bed. I thought back ten years ago when we purchased it. We were chaperoning a group of teenage girls who were on a singing tour (our youngest was a part of that talented group). In one of the cities there was a young man standing by a stone wall with his candle holders displayed on top. As my husband and I stood there admiring these inexpensive candle holders he had made I looked more closely at the young man and this feeling swept over me. We are fellow travelers on this earth at this moment in time. We are separated by many miles and many years but we have much in common, in fact, more in common than not. Our paths will cross for a few minutes but it is highly unlikely we will ever see one another again. “What are his dreams, his desires, his pains, his disappointments, his joy, his life experiences?” I wondered as I stood there on the side of the street as we were deciding to make a purchase.

I have had those same feelings come over me as I’ve observed my two sons with fragile X. Sometimes when I am sitting on the couch next to Clark I will turn my head and study his profile, this number one son. With a heart pumping blood throughout his body, giving him life, he is much like me. He has dreams and feelings of love, sadness when someone calls him a name, pain when he is hurt, laughter when he is happy, enjoyment in eating the entire apple. Our paths, his and mine, run along together and I feel blessed to be taking this journey together.

Final Day of Bowling

Yesterday was the final day of bowling for Clark and Phil until August when it will start up again.

I am glad they are enthused to go each Saturday morning for almost six months.

I am glad the bowling alley is only 15 minutes away.
I am glad their sister drives them most Saturdays. I used to.
I appreciate all those who volunteer their time to help the bowlers.
I appreciate the bowling alley for providing lanes for special population bowlers, three games for $5. What a deal!

And I love three hours of quiet while they are gone!

The New Look

Emily, a friend of mine, did this--put together a new look for my blog. I remember the day that picture was taken—April 7, 2006. Paul had a Friday off so after working around the house much of the day our family decided to travel 56 miles north of our home to Skagit Valley to the annual tulip festival. It cost less than traveling almost 5,000 miles to the Netherlands. It is an incredible sight to see acres of colors.

This snapshot of the the three of us close together and smiling captures a moment in time. For me it says we like each other, we enjoy being together, we like being silly and going places together. According to my journal one member of the family was grumpy but we don’t see that in this picture. Knowing what the daily landscape of our lives looks like I am sure there was name calling and tattling also on this excursion. Every day is reminders and remembering—reminders to "talk nicely", "be kind", "no name calling", "say you're sorry" and remembering that in some ways Clark and Phil are stuck at six years old.

And in some ways the picture is misleading. Clark is the hugger, the kissy one who tells me he loves me at least twenty times a day. I’ve never counted but I don’t think that is an exaggeration. Phil usually will have none of that but he has other ways of showing his love so I am content and relish the times he does lean into me and put his arm around me for a picture.

Free Entertainment

As Paul and I sat with friends on Friday evening watching a televised broadcast, he put his arm around me and played with my hair and then gave it a flip and then another. I turned to look at him. He was smiling and so was I as we remembered together an incident that happened to me about ten years ago. I was in a church meeting, sitting on the second row in the chapel. On one side of me was Phil and on the other side was my youngest child. Paul was in another church meeting elsewhere. As we sat listening to the speaker at the podium who was directly in front of us 10 feet away Phil started to brush my shoulder-length hair off my shoulder and onto my back and then he proceeded to scratch my head. It felt great I recorded in my journal. Then in an instant as though a switch had been thrown, he started flipping my hair so it was flying and quickly covered my face. I smoothed it down, uncovered my face, and then leaned over to say something to Phil but before I could speak he whispered very clearly in a slow affected voice “Knock it off, Sonny.” I tried to remain serious but failed miserably. My laughter only brought encouragement so he tried flipping my hair again. We had done enough entertaining. I snapped out of it and shook my head no and to my relief he stopped. I was under no illusion that I could drag a 23-year-old out of the meeting.

State of the Union Haircut

Interpretation:
Mom
Philip Tucker
Tomorrow
January Sonny
Saturday 1-22
Haircut

I wanted to watch the State of the Union last night and Phil wanted his hair cut. His first message to me came last week when he attached it to my back with tape and then ran out of the room laughing. I told him no. In a few days another note was attached to my back with much laughing. This time I told him yes. I then promptly forgot. Tuesday afternoon when I was preparing dinner Phil prepared for the haircut by getting everything ready. We both won—he got a haircut while we watched the State of the Union address.

Even (anxious) Clark got a haircut.
“I’ll bet you like President Obama’s haircut, don’t you Phil.” I said as I cut his hair.

Anxiety

Clark was well into adulthood before it dawned on me that certain behavior and looks I had seen during his lifetime was anxiety. It is usually when we are out in public that he responds negatively to a comment made by someone he doesn’t know. “I’m telling the bishop (head of our church congregation).” He used to threaten to tell Mr. Harndon (a high school teacher). It is made when he doesn’t like or understand a comment or it is unkind or it is an unfamiliar situation. I wish I could say I always handle his anxiety with patience and kindness but often it is with impatience as I try to snap him out of it immediately and always failing with that approach. Clark brought this picture home a couple of years ago that someone at Special Olympics had taken. I hated it and put it away so I wouldn’t see it. I am glad I didn’t throw it away because I’ve come to understand better that he is looking very anxious. Now as I look at the picture I wonder what happened to him. What was he thinking? What had he done? What had he said that alienated others? We see daily his anxiety. Now I recognize it. I know there is prescription medication for it but because Clark takes about 20 pills a day for his seizures I am not ready to add one more. I’ve had two experiences with Clark recently that prompted this post.

I did not tell in the previous post that when Clark and I went to Macy’s he sat outside the dressing area while I tried on clothes. When I came out of the dressing room Clark was calmly waiting but he was not smiling. When we walked to the counter to purchase some items he started muttering about telling the bishop. It was then I realized that someone had tried talking to him while I was trying on clothes. It was the salesperson. I am sure she was frustrated and confused with Clark’s behavior. I quietly but firmly told Clark to stop talking. He finally did.

The other experience happened this past week when I took my car in for an emissions test. I took Clark with me. It was while we were waiting for our turn that I realized that I had never taken Clark before. We watched the car in front of us and then it was our turn. The man told me that I would need to get out of the car for a few minutes but, pointing to Clark, “He can stay.” As I turned my head and looked at Clark I realized that this could be a very anxious moment for him so I asked him if he would like to get out of the car with me. He smiled and said no. “Are you going to be okay while I sit over there?” “Yes.” He smiled again. I got out while he sat with the stranger. All went well and he was still happy when I got back in the car.

So—in the future when I take Clark with me will I remember to talk to him about a potential situation? I don’t know but I hope so. I am going to try.