The Day Clark's Name Was Taken

I had a strange experience with Clark the other day when I took him to the grocery store with me. We had just arrived at Safeway and were still in the car when another car pulled up in back of us and out jumped Man Wai Ko ready to go to work as a courtesy clerk. He has been there for about six years. Philip and Man Wai were schoolmates and friends. Man Wai is Chinese, has Down Syndrome and lives ½ mile from our house. I remember years ago when Adam (#2 son) came home from his paper route and told me about the cutest little kid who reminded him of Philip. His shorts were pulled up past his waist and white socks pulled up to his knees. It wasn’t long until they ended up in the same school and we got to know him. We lost track of him until he started work at the same Safeway where Cherlyn, our daughter, works. He was hired as Man Wai Ko but eventually he told the manager he had changed his name to Justin Timberlake. His nametag was changed. Then he changed his name again, this time to Clark Kent. His nametag was changed again. I explained to Clark that Man Wai was now known as Clark. “My name?” “Yes, he likes the name Clark Kent and that’s what he goes by.” We were in the store when we heard Clark (he will always be Man Wai to us) being paged. Clark (my son) told me that Man Wai had taken his name. It wasn’t until we arrived home and Clark continued to sit in the car with his head in his hands that I realized how something so seemingly insignificant had affected him. It took a lot of reassuring that his name had not been taken before Clark could let it go. It seems particularly strange since Clark has known others with the same name but for some reason that day he felt his name had been taken.

Turmoil in Tofino

Our family had a stomach-churning experience while on vacation. This is quoted almost verbatim from my journal. As a family we were ready to go to Grice Bay and Schooner Cove for a couple of hours. We were all in the car except Phil who opened the sliding door and said he couldn’t find the case for his glasses and Clark had called him a name (actually he had said that Phil went to gooney school ) and with that he slammed the door and took off down the long driveway. We continued to look at the map and firm up our plans on where we were going. We drove out to the street in front of the house—no Phil. We started to drive around looking for him. Clark was now feeling very remorseful. We drove out a mile in both directions, walked on the beach and around the house, and then after 1 ½ hours we decided to call the police since we were in a new place with lots of trees and vegetation. We called and gave them a very good description of him and what he was wearing (his uniform consists of shorts, a polo shirt and a baseball cap). Within a very short time two police cars arrived at the house. We explained a little more about his personality and then we all got in cars to look. Now it had been two hours. My stomach was upset and the world looked bleak. It was raining and I wished that I could make the trees and bushes disappear so I could see where my son was. I imagined the worse—that someone had harmed him or that he had become so disoriented because of the unfamiliarity and the dense vegetation. We headed down a street and saw one of the police cars by a public access entrance to the beach and then the cell phone rang. “We’ve found him.” I listened for the unspoken, the tone of her voice. She told us her partner, the one on the beach, was looking at a group of people when Phil walked up behind him. The policeman turned, saw him and asked if he was Phil. They had just gotten in the police car when we arrived. I could feel the fear and worry drain out of me, replaced by feelings of joy and peace. “Where have you been?” “I don’t know.” He never does. We thanked the police as did Phil. It was so wonderful to be back together as a family to do the simple, ordinary things of life--to eat dinner, to watch one episode of “Monk” and one of “Murder, She Wrote” (there was no TV at the house so we took our laptop and some DVDs we had checked out from the library before we left Seattle), to hear Phil laughing and noisy. So many prayers, both silent and vocal, had been said during the two hours that he was missing. Even a concerned stranger said she would pray. We were so grateful at the end of the day that all turned out well. I know that is not always the case.

The next day when we left to go to Schooner Cove we asked Phil where he’d gone and he actually showed us by pointing. He even showed us a rock he sat on and the path he took through brush to get to the beach. It was a couple of miles from the house. He was headed the right direction when he ran into the policeman and would have eventually made it home on his own. I am so grateful this experience had a happy ending.

Footprints in the sand

I love being on vacation with my family whether it’s just the five of us (Paul, Clark, Phil, Cherlyn and me) or all 16. This week the five of us are in Tofino on the west side of Vancouver Island. It took us over ten hours of driving plus a ferry ride to get here, to our friends’ vacation house, Spindrift. It is definitely a house, not a cabin. It has hardwood floors, a washer and dryer, five bedrooms and four bathrooms and is right on the ocean. As I am typing this I can see surfers in front waiting for the right wave. It is 6:37 p.m. and Paul and I are just getting ready to take another walk on the beach. I don’t know how long it will be. Normally it would be a couple of miles but we have walked and hiked a total of eight miles today, my best guess.

We arrived last Saturday night. After unloading the van and then going to the grocery store we took a long walk on the beach. Phil said to me “Look, no footprints.” And he was right. The beach is very wide with hardpacked sand, finer than grains of sugar, and a slope that is so gradual people were riding bicycles. At the time of our walk there was a thin sheen of water, thus no footprints. The next day he observed that footprints were following us. I thought a lot about the “no footprints” comment. How many people have lived since Adam and Eve? How many have left a record of some sort? And for those who did, what did that record say about their lives?

As I took my daily walk in our neighborhood a few weeks ago a woman crossed the sidewalk in front of me heading to her house (which is a few streets over from my house). I commented on how much the moles liked her yard. I had noticed for years that her house seemed to have more than its share of mounds in a beautifully kept lawn. We complained about those annoying critters. “By the way, I’m Molly.” she told me. I introduced myself and we continued chatting. She told me that she and her husband had lived in that house for 41 years (we have lived in ours for 34 years and yet I had never met her), had raised two children, and that he had died just a couple of months ago. A friend of mine who lives on her street told me that there were two houses next to each other where both husbands had Alzheimer’s. Often as I walked past her house I would wonder how things were going even though I did not know them but now I knew; he had died. “What a great man he was.” she said. She told me that he had been diagnosed with Alzheimer’s twenty years ago and that she had taken care of him at home until the end.

I think we all want a confirmation that what we’re doing during our lifetime is important even if it is not glamorous in the eyes of the world. We want footprints that say we were here and that our lives mattered, like Molly’s. Her actions will not be lauded, nor even known, by very many but she is a hero in my eyes. Clark and Phil are leaving footprints. I have observed their impact on our family, our neighborhood, our church community, our friends, strangers in a store, cashiers in a bank, or Special Olympics volunteers.

This vacation is almost over and I’m not ready to leave the beach and long walks on the sand.

A Trip to the CHDD

I had an interesting experience yesterday. Two other board members (Fragile X Association of Washington State) and I went to the Center for Human Development and Disability (CHDD) at the University of Washington. We met with Dr. Sara Webb, Research Assistant Professor of Psychiatry and Behavioral Sciences and a Research Affiliate at CHDD. She, along with her research team, are conducting research on social processing in individuals with fragile X or autism which will allow them to examine differences in social skills and brain activity. Specifically they are looking at eye gaze or eye aversion. Phil definitely has it, even at home or in a comfortable situation. I’ve noticed that sometimes when Clark is introduced to a new person his eyes are looking down or to the side but most of the time he has good eye contact.

Sara and her team (seven total) were there to learn about what to expect from individuals with fragile X since they had mostly been working with individuals with autism. For over an hour they asked the three of us specific questions about our children, what do they like to talk about, will they be comfortable going into a room without you, do they know they have a disability, etc. Their questions were good and thought provoking and allowed me the opportunity to talk specifically about two of my kids. Cathy, Jackie and I laughed and shared stories while I got to know more about their sons. I felt such a camaraderie and appreciation for them. Our children may have differences even within the fragile X spectrum but there is much that is similar. And though our children may have a disability life is good and there is joy and contentment.

Now it is time for me to go check suitcases. We are going on a short vacation which requires me to inspect items going into Clark’s and Philip’s suitcases. They tend to over pack, taking 20 pairs of underwear, ten pairs of dirty socks and every tee shirt they own whether they wear them or not. Sometimes there are a number of books (because that’s what I take) even though they can’t read. When I get through their piles will be reduced substantially.

Be proactive!

Last week Clark, Phil and I went to one of my favorite stores—The Dollar Store. I was looking for wrapping paper and storage containers. I found, in addition, a bouncy ball that would be fun to toss around when there were small children at our house which happened a few days later. We had invited a young couple with a three year old and a newborn to our house for dinner. They will soon be moving to Michigan and we wanted to spend time with them before they left. It did not take their three-year old long to find the ball and claim it as her own. Phil informed her that it was not hers, “it’s ours.” She repeated “my ball.” Phil took the ball while Cathy, her mother, explained it was not her ball. I said to Cathy that it was a lot like a three-year old and a six-year old interacting. He soon returned and had written on the ball our name and telephone number and then he let her play with it again. I’m not sure if Clark and Phil see themselves as adults who have some authority or if they think of young kids as their peers. It’s probably a mixture.

As I replayed this incident in my mind on my morning walk today I thought back a few years when a neighbor came to me to tell me that Clark (who was about 30 years old at the time) was speaking harshly to his young sons and their friends. They were playing in a tree house my #3 son built many years before on city property next to our house. I didn’t hear Clark’s conversation but I imagine he was telling them they couldn’t play there (because “it’s ours”) and they should go home. I apologized to our neighbor and then talked to Clark, explaining that even though his brother had built the tree house anyone could play in it.

The house across the street is for sale and it looks like a family with two young children may buy it. When we meet them I need to tell them about Clark and Phil, not just that they have fragile X (I always do that), but that they might get after their kids if they think they are doing something they shouldn’t be doing. I need to be proactive.

Painting the House

Most of the painting is finished. I didn’t think the outside of the house looked weary or worn, even though it had been twelve years since it was last painted, but this new paint job freshens up the house and makes it look crisp and clean. The plan was to spend last Monday through Saturday painting. Colt took the extended ladder and painted the top third of our two-story house, Paul took the shorter ladder and did the middle section and Clark and Phil, with help, did the lower third. For a couple of reasons Clark is better at staying with his painting most of the day—he loves to work with his father plus he perseverates in words and actions. Phil is random and impulsive so some of his painting caused more work than he gave. In exasperation Paul came in the house at one point and told me that he felt he had spent more time cleaning up after Phil than he had spent on his own painting. “Welcome to the past 30+ years of my life.” I told him. It even elicited a smile.

(Occasionally, Phil was asked to hold the ladder.)

Despite the slowdowns things moved along faster than expected. Helping to do that were three extra people for six hours on Wednesday. The core painters—Paul, Clark, Phil and son-in-law Colt—were joined by Colt’s father and two brothers. They gave an incredible gift of 18 hours! Not only did they give the gift of labor but they were cheerful and great to have around. So instead of finishing on Saturday, they finished Thursday. Paul and Clark did additional painting on trim plus a back door on Friday and Saturday. Ladders, paint cans and brushes, drop cloths and rags have been put away and now we are ready for a family party tomorrow night.

Fragile X Kids and Chores

A friend and I were talking this week about the chores our fragile X kids do around the house. I must admit I felt prideful when I mentioned some of the things Clark and Phil do. When Clark was almost four Paul and I visited friends in southern California (we were living in the Bay Area at the time). These were college friends who had the first two of eventually six girls. I was able to observe a rule they had instigated in their family. The younger of the two girls was just a baby but the older one was over four and was required to dress herself and then dump her garbage each morning before breakfast. I was in their front room early one morning when I saw their daughter tiptoeing past the window with her garbage. She wanted to surprise her parents. I was impressed and went home determined to start giving our two oldest chores appropriate for their ages and abilities.

We didn’t know at the time that Clark, our oldest, had fragile X. We knew he was not up to par with our friends’ kids who were the same age but we did not know he had fragile X syndrome. As a result he was required to do jobs just like his brothers. Would I have babied him if I had known? Would I have been less frustrated? I doubt it. I think it is a lot of work to train kids, with or without fragile X, to consistently do chores. One thing, I am really glad I did not give up along the way even though I was tempted. It continues to be hard at times, all the reminders and inspections. Clark is usually slow at getting to his chores. He knows that he is to unload the dishwasher each time it is full of clean dishes. Most of the time it doesn’t matter if it is done quickly but occasionally it is time to load dirty dishes and we discover that the clean dishes have not been unloaded. Phil is very responsible with most of his chores and that’s a good thing since he is in charge of taking out the garbage and recycling each week. They each have a bathroom to keep clean. Usually the bathrooms pass inspection. If no inspection takes place for quite a while the standard of cleaning goes way down. Phil always remembers to do his cleaning but Clark needs reminders. Sometimes he will say “I already did it.”

“Clark, did you clean the bathroom this morning?”

“Yes.”

“It doesn’t look like it. You’ll have to do it again.” And then it dawns on me that he did already do it—last week.

(This is a picture of Phil cleaning the boys' bathroom.)

Clark and Phil were treated like the rest of our kids when it came to doing chores, before and after we knew about fragile X. Today they vacuum, dust, change their sheets weekly, clean bathrooms, unload the dishwasher, set and clear the table, mow the lawn, wash and wax the cars, water plants and this week they will help Paul (and Colt, our son-in-law) paint the outside of our house.