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.

Homemade Chocolate Chip Cookies

Homemade chocolate chip cookies have always been a favorite at our house. We always double the recipe and then give most of them away. Many years ago I went into the kitchen to make cookies. Philip had already gotten out all the ingredients, not one more nor one less, and had them on the counter. Amazing! As I would finish with an ingredient he would put it away. From that day on he became my assistant. His favorite part is pouring in the chocolate chips and then giving the batch “a taste test” which usually requires a few samplings

One day while Paul and I were working upstairs “Phil, unbeknownst to us, was downstairs making chocolate chip cookies…I am sure it had all the right ingredients, but not the right proportions.” Ten dollars worth of ingredients went into the garbage disposal while I tried to explain to Phil why we couldn’t bake the cookies. I can’t remember but I imagine I let him give this batch “a taste test” so he would understand. He has not tried doing it again and is still my assistant. It is just not as much fun to make cookies by myself.

"You need glasses."

I had the type of day Saturday that puts everything in perspective, that makes life seem simple and clear, like putting on glasses when your vision is blurry. The people I hung out with didn’t care about having the coolest clothes or cars, the most beautiful homes or going into debt to have the latest play things. They were all winners, whether they had a lot of ability or a little.
Our family was at the Washington State Special Olympics track and field events at Ft. Lewis. Most there also didn’t think, or worry, about growing a garden or balancing a budget but that’s okay because the rest of us are here to help.

Clark and Phil both participated in the shot put (one of the first events on Saturday morning) and in separate relay races (the last event of the day). It didn’t matter that there were only two teams participating when Clark ran with a slight limp from a two-week old injury; he got a silver medal that he could take to church for his own personal show and tell. We all had loud cheers for Phil, the third leg of his relay team, as he rounded the corner passing four other runners and helping his team come in first. It was a great way to end a day of competition.

In between the two events we took Clark and Phil to a trailer set up by the bleachers where free eye examinations were given and free, prescription glasses for those who need them. Despite continual patience from everyone we came close to giving up on Phil. When he was told to open his eyes, his mouth opened instead and his eyes closed. He rubbed his eyes more than I’ve seen him rub them in the past year. Finally it was determined that his glasses from three years ago were still working well for him.

Clark had never had an eye exam so anxiety kicked in with full force. By the time he had been through all the preliminary procedures and emerged from the darkened exam room he had a furrowed brow and was muttering threats about reporting this to Bishop McCann. He had been told “You need glasses.” When he was in high school he always told his teacher that his dad would hear about this. At home it was the reverse; Mr. Harndon was going to hear about this. It is always hard to calm him down but eventually the repeated reminders of everyone in our family who wears glasses, plus friends, caused him to relax. We knew that if the glasses did not help him to see better he would not wear them and we were not going to force him to wear them. He put them on the next day when he went to church and again today. They must make a difference.

In keeping with tradition, we stopped at Taco Bell on our way home. It was a good day.