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.

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.

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.)

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.