Thursday, December 31, 2009

"I am handsome."

“I am handsome.” Clark was talking to himself as he walked toward his room about how he would look when we attended the farewell party. That was yesterday. Brett and family are moving to Australia next week for three years and so there was a party. Our entire family, along with 35 others, was there to eat lots of yummy food at an Italian restaurant and to visit. And Clark did look handsome in his nice pants, collared shirt and sweater. He sat across from me and I noticed so I told him. “Thank you Mom.” It was a good party as was evidenced by the joyful chatter even though we will all miss Brett and his family in different ways.

When Paul was up in the night with a headache (probably caused by all the fatty food) Clark was awake too. He joined Paul in the study from 5:00-7:00 a.m. He talked and talked and then fell asleep in a chair. This afternoon I was at the computer trying to get caught up on a few things. Clark came in talking and sat down right next to me. He talked at length about a motor home he wants to buy and what’s for dinner which made it hard for me to concentrate on what I was doing. I was not a very good conversationalist so talking was all one-sided with just a few comments from me. Pretty soon Clark was asleep again.

Monday, December 28, 2009

The Impact of Music

To see Clark and Phil in church with their hymnals open and on the right page you would think they could read. They can—words like in, the, exit, dog, cat, days of the week, months and a few more random words. I remember when I realized Phil could find the right page in the hymnal without help. I thought he was amazing and recorded that fact in my journal. Clark could not do it but then one day I noticed he had found the right page. Yesterday, in church, he couldn’t find it so I took his hymnal, turned to the right page and handed it back to him. Often I will just point the direction that he needs to go so he can find it on his own. I smiled yesterday as my handsome sons in their Sunday clothes (sport coats, slacks, and ties) sat there with their hymnals (no sharing for them!) held up so they could see the chorister. Clark rarely sings but Philip will if no one is listening to him. Sometimes I can hear him and that is a treat for me. Phil has great rhythm and has enjoyed music since he was very young (two?). I would occasionally find him in the front room standing on a stool with a baton leading the Tabernacle Choir, on a record (no CDs in those days) he had put on the stereo himself. He would sing in his “opera voice” with gusto and vibrato. Then his voice changed during his teenage years and he could no longer sing opera. He has not outgrown the conducting though. About five years ago he was asked by a friend to lead the singing at a funeral. He said yes. I could not believe my ears and was somewhat nervous that he would become silly or inappropriately animated. He was neither. I thought he was amazing and recorded that fact in my journal. He now leads the singing weekly in priesthood meeting. He is responsible and enthusiastic. I have watched him from the hall (trying to appear inconspicuous but failing) and my heart swells with pride at a job well done. Paul loves to watch the reaction of visitors. They study Phil trying to figure out why there are some peculiarities and then they smile and join in singing.

Friday, December 25, 2009

Merry, Merry Christmas!

It was the middle of the night (the very early hours of Christmas Day) when Paul was awakened by the presence of someone by his side of the bed and then a voice “Santa just came.” It was Clark who was enthusiastically informing us. Of course it was black outside and far too early for us to awaken so he was sent back to bed. It was many hours later before we were downstairs to find that Santa had indeed come. It was a peaceful morning with only five of us—maybe the fewest we have had since 1974 when we had three small children.


Christmas Eve Day was “Male Bonding Day” when Paul and the four boys and our son-in-law piled in our van at 10:30 a.m. and went downtown to get a few last-minute gifts. At least that is the excuse. I think they enjoy being together on this day which has become a tradition. It is just one more event that ties them together and creates memories that will be talked about in future years. This year, after the shopping, they went to a Vietnamese restaurant for pho which Phil will remind them next year that he "definitely does not like it". They were back home by 1:30. At 6:30 another tradition began. The family, 11 of them (one family of four missing), went on a short walk so that I could light the candles, turn off the electric lights, put out the hors d’oeuvres and put on The Nutcracker Suite. We ate our traditional meal and then gathered in the living room for the reading of Luke 2 to remind everyone that in the midst of all the excitement of gift buying, gift giving, gift receiving, and parties that it is the birth of the Savior that we celebrate—the Savior who paid for our sins so that we can repent, be forgiven of our sins and return to live with Heavenly Father. Clark knows why we celebrate Christmas but Phil needs a reminder.

Monday, December 21, 2009

Lessons from the Pills

In April 2005 I had an experience that I not only recorded in my journal but I told about it in a talk I gave to a large group of people. One morning Clark “had had a few small seizures and his head hurt. I was getting him medicine for the seizures and for his headache. A simple, common experience took on added weight and meaning that morning as I watched the pills drop from my hand to his. I was struck as if I had been poked ‘Pay attention—this truly is profound. He trusts you simply and completely. He has no doubt you are giving him something to help him.’ The thought never entered his mind I would do otherwise. I am his parent.” I have replayed this experience in my mind many times in the past four years and it humbles me each time. Contrast this with something that happened two nights ago. Our family was eating dinner when I looked down and there on the floor was a new eraser for a mechanical pencil. It looked like a pill so I picked it up and as I handed it to Clark I told him he had forgotten to take one of his pills. He looked at it and popped it in his mouth. “Clark, I was just kidding. It’s not a pill.” I quickly said and he spit it out. Even though the eraser didn’t look exactly like his pills he trusted me. Again I felt like I had been poked—I had betrayed his trust. He forgave me quickly and easily and has not even brought up the incident. As a parent I continue to teach but it is my sons that reveal to me many truths about trust, love, faith and forgiveness.

Saturday, December 19, 2009

Christmas Party at the Bowling Alley

I drove Clark and Phil to bowling this morning (Cherlyn usually does) so I could watch them and then go to the pizza and pop Christmas party at 11:45 in the bowling alley. They were on lanes next to each other so I could sit without moving and watch them both. I also worked on some Sudoku, read an essay or two out of This I Believe 2, and visited with bowlers I know whom I have not seen in a while. Howard wanted to talk. He was bowling with Clark and would come to me as soon as he had taken his turn. I have known Howard for many years but I spent more time this morning finding out about him. He is 53, does not work anymore, is going to have oral surgery on Monday, his parents have died and he does not have contact with siblings and he is going to spend Christmas Day with a friend. I learned a lot of other things but he also learned about me when he asked questions--where was I born, where were my kids born, where did I work, what was my husband's name. They were good questions. Soon they had bowled three games, visited Santa and received a gift and then it was time for the party. There is a wide variety and range of disabilities and ages but all have some form of mental retardation. There were some in wheelchairs, some who could not talk, some who could not feed themselves but most were mobile and vocal. Also at the party were the volunteers, some caretakers and a few parents. As I ate I watched the girl across from me who could not feed herself very well and was there with a caregiver and I tried hard to understand the young man sitting next to Clark and I could hear excited conversation and laughter coming from the tables around me. As we left the party many wished us a Merry Christmas.
Phil always has a good time as is evident by the smile and clapping.
Howard is in the blue coat and was very happy to have me take his picture.


Thursday, December 10, 2009

Tuesday Was a Very Good Day



It was Clark’s 39th birthday. Lest we might forget Clark talked about his upcoming birthday for weeks before the actual day. The night before he was reminding his father “It’s my birthday tomorrow, Daddy.” And to me as I sat at my desk “I’m so excited for my birthday.” He didn’t actually think we would forget; he was just plain excited.

On Tuesday morning with the temperature outside at 15 degrees he was greeted with “Happy birthday” before he even got out of bed. The birthday person isn’t required to do chores that day. Of course the highlight of the day was the birthday party which started at 6:00. Before that Clark got to go to Sam’s Club with Paul and me and was treated to a cup of ice cream with berries.

Clark requested hamburgers and chips for the birthday meal with a clown cake for dessert (just like the year before and the year before that and...). After eating it was time for the opening of gifts. What do you get for someone who does not have many needs, wants or hobbies? He received pajamas, two movies, a calendar (from Phil), socks and a fleece jacket from one brother and his family and a gift card to Red Robin from the other brother and his family and a Target gift card from one of his sisters. He liked his gifts. During the party he had a couple of small seizures which caused him to act more subdued than usual but it was still a good day.

Thursday, December 3, 2009

Group Home or Not

We just finished a board meeting at my house an hour ago—Fragile X Association of Washington State. We are planning our annual parent/educator/medical meeting for February 20 at Children’s with world renowned Randi and Paul Hagerman (from the MIND Institute at UC Davis) as our keynote speakers. We feel fortunate to have them come. After we were through working on the logistics of the upcoming meeting, we stood around and talked as parents of children with fragile X. One woman has one child, 28 years old, and he is affected by fragile X. She and her husband are thinking of putting him in a group home and are in the early stages of trying to decide whether that is the right thing for him. Another mother at our meeting has two children, an unaffected daughter who is in college, and an affected son who is 20 and is in the transition program, a three-year program designed for high school students with disabilities to help them transition from high school to work or college. She and her husband are wondering what will be the best thing for him in a few years. Another woman on the board, a grandmother of a fragile X grandson, looked at me and told me I was very fortunate. I agree. We have two affected sons who might fight at times but are companions, plus we have a daughter who lives at home who takes over when Paul and I go out of town or just out for the evening. When we finished talking I opened the front door and was greeted by my very own special group home which should be around for many more years.







We are going to be replacing our sidewalk and porch so this 30-year old bush had to come out.


Saturday, November 28, 2009

Decorating for Christmas

It is Saturday morning and the house is quiet. The boys are bowling and won’t be home until noon and Paul and I are in the study, preparing for upcoming lessons. I love the quiet made sweeter because of the principle of opposition in all things. I would not appreciate it as much if I didn’t know that soon there will be an explosion of noise and activity with interruptions and talking and requests (or demands).


Five or ten years ago we began the tradition of decorating for Christmas the day after Thanksgiving and it happened yesterday. Clark and Phil started getting excited BEFORE Thanksgiving so after the okay was given they hauled down boxes from the attic and put them in the front room and piano room. We worked most of yesterday afternoon. I have to admit our front room looked like an idyllic scene with a fire in the fireplace, Christmas music playing (Josh Groban and Acapriccio), egg nog being sipped and everyone together (at least the five of us who live under one roof). But there were also outbursts of impatience and reminders not to name call. Phil was easily distracted. After five or six hours we quit for the day (for sanity’s sake) and resumed today. In the midst of it all I ask myself if it is worth it (so much decorating and staying on top of reminders to help) so, a few years ago, I wrote on one of the boxes in big letters “IT IS WORTH IT!” And now after a few hours put in today we are finished and I can say with certainty “IT IS WORTH IT!” Now we have five weeks to enjoy it.Notice who is helping and also notice who is on the couch in back of Clark. Naptime occurred during decorating.

Tuesday, November 24, 2009

"Give Thanks"




I have written about (August 1) “Teen Club” before—a once-a-week meeting held at our local community center for 2 ½ hours for adults with developmental disabilities. I don’t know how many years it has been in existence but I discovered this wonderful program about two years ago and Clark and Phil have been going ever since. I especially like it because it is within walking distance. Recently they each came home with “Give Thanks” papers which, after reading, I put on the refrigerator.


Clark’s list—
I am thankful for
TV
Mom
Btter (Brett) Tucker
Adam Tucker
Bishop Dick
Pip Henson (Hansen)
Kioset (Rose)
Colt Henson
Paul W. Tucker


Phil’s list—
I am thankful for
TV
TNT (Teen Club)
Hose (house)
Phlip Tucker (he always misspells his name)
Pip Tucker
Cot Tucker (Colt Hansen)
Mom
Famiy

Friday, November 20, 2009

"I'm not going!"

I have heard that for most of Phil’s 33 years. “Phil, we have tickets to the Paramount to see River Dance. You’ll love it!”

“I’m not going.”

“Yes you are.”

“No I’m not.”

“You will go and that is final.”

He goes and, of course, he loves it. He can’t keep his feet still nor stifle laughter of pure pleasure and delight. When the show came to an end Phil jumped to his feet, clapping harder and louder than anyone I’ve ever heard. He enjoyed the fact that he was responsible for the standing ovation.

Yesterday I needed to pick up some items at Safeway. “Phil, I’m going to the store and you’re going with me (he had already done a number of things around the house plus watched two hours of TV).”

“I’m not going.”

“Yes you are.”

“No I’m not.”

“I know your strategy” I tell him “you want to watch TV all by yourself (Clark was going somewhere with Paul).” He laughs.

“I’m not going.”

“You are going so get your shoes on.”

He finally does and we leave for an hour of mostly fun. He is energetic, happy and helpful and occasionally over the top in his exuberance. It was senior citizen day so cookies and coffee were set out. I thought Phil was helping himself to only a cookie or two but he continued to reach into his bottomless coat pocket for more cookies as we shopped. In the car going home he reached in again and got out a cookie for me and another one for him.

Later that night while I was brushing my teeth and getting ready for bed Phil came in and said "That was fun--going to Safeway with you."

Wednesday, November 11, 2009

A Good Day

Today has been better and I have not felt annoyed. In fact we did something together that I almost always enjoy. Clark, Phil and I went to Sam’s Club this morning to fill the van up with gas and buy $243.56 worth of groceries. Phil always asks for the keys after we arrive there and then as we are walking the two minutes to the store he presses the lock button over and over until I tell him to stop. When he is through with that noise he claps his hands and yells in short bursts because he can hear an echo coming off the building. I know I should rein him in but I think it is funny. After showing my card Clark and I took off immediately with the cart and started loading. Phil always has to watch TV. The next time I saw him he had a twenty-pound box of laundry detergent with him. Clark and I had already put one in our cart but I decided we could use an extra box. After checking out we then did something we have not done in a long time. We each bought a hot dog and drink for $1.64. A typical jumbo size hot dog has 180 calories and 18 grams of fat. And that is why we don’t do this very often. Yum, it tasted so good with mustard and onions and relish spilling out all over. When we arrived home everyone pitched in and helped carry in groceries. I always appreciate their help! It has been a good day and soon I will leave for literary club to discuss Beowulf. I don’t think I have ever read it and was delightfully surprised to find myself enjoying it so much (translation by Seamus Heaney).

Tuesday, November 10, 2009

Waving Good-bye

It is 6:00 p.m. and Paul just left for racquetball at a local community center. I stood up from the computer which is on my desk to wave good-bye. Waving good-bye is a tradition at our house and if I am at home I make sure I am at the window or door to wave to whomever is leaving. Over twenty years ago I wrote a few lines about that when Cherlyn left for school one morning.

I centered myself at the window
Watching my seven-year old
Skipping and smiling, then out of sight…

I thought at the time as she skipped down the street with her pigtails bouncing how our home was the center of the universe for her. She would return just as the other five would. The time would come though when friends and outside activities would beckon. Three have left and now their new homes have become the center of the universe. For Clark and Phil our home is still the center and for Paul and me. We spent the past six days in Chicago for fragile X meetings and now we are home and centered. The first day back after being away implants within me mixed emotions. I am grateful to be home safely and with my family again and yet I am easily annoyed by so many interruptions and noise and “Stop calling me names...” and "My sweats have a hole." (Put them in the black hole normally called the laundry room.) and "I'm telling." The silence in the study is wonderful and soothes me while Cherlyn is doing dishes (I fixed dinner, Phil helped set and clear the table and Clark will unload the dishwasher). I know the TV is on because I can hear Philip whooping and hollering and I feel guilty that I’m allowing it right now but I want to be alone until Paul returns. Then it will be time for me to cut hair while we watch something together and that is always good.

Monday, November 2, 2009

Gorgeous Fall



It has been such a beautiful fall in the Northwest. As I sit at my desk I can see my next door neighbor’s tree (I am ashamed to admit I don’t know what kind it is) which now has yellow leaves. From the back of our house I can see our own tree, a scarlet oak which replaced our giant willow tree which came down about 6-7 years ago. It was huge when we moved into our new house in 1975. I love weeping willows but it was always shedding something. It was the last to lose its leaves each fall and the first to bud, announcing that spring was not far away. I was sad to see it come down but have enjoyed the oak. We didn’t realize when we bought it that it holds onto its leaves (which turn brown in November) and drops them in April right before new leaves appear. I like that.


Paul, Clark, Phil and Cherlyn were out a week ago mowing, edging, and pruning (one of the last times for the season) while I worked on finances and cleanup in the house. Two days ago the five of us, along with about 40 others, went to a105-acre horse farm on Vashon Island for a service project. It was donated to the church as recreational property. There are no longer any horses. Cherlyn watched young children while we, Clark and Phil included, pruned back blackberry vines, bushes, and weeds so that the white-painted wooden fence was more visible. The temperature was in the high 50s making it very comfortable to be working outside. Periodic sprinkles did not slow us down. Gortex coats are a must if you live here so we would just put up our hoods. Clark and Phil stayed with us for two-three hours doing their share of the work. One of Phil’s main jobs was to laugh at everyone’s jokes. As we were returning home on the ferry Phil said “That was fun!” and it was.

Thursday, October 29, 2009

Eye Gaze Study

Clark, Phil and I left the house this morning at 9:15 to go to the Center for Human Development and Disabilities in back of University Hospital (University of Washington Medical Center), the very place where Clark was diagnosed with mental retardation when he was five and Phil a few years later. It wasn’t until Clark was 11 and Phil was 5 that they were diagnosed with fragile X syndrome, inherited mental retardation. This morning each had a toasted scrambled-egg sandwich which they ate on their way to their last appointment for an Eye Gaze Study. We always enjoy an excursion together so there was much excited talking with church music playing (Philip’s choice) in the background. This study is concentrating on discovering the relation between brain functioning and eye gaze in individuals with fragile X syndrome. Phil definitely has eye aversion which is often seen in individuals with autism. This project will allow a research team to examine differences in social skills and brain activity in a study using behavioral tests and EEG measures of brain functioning.

As I sat in the waiting room I could at times hear both Clark and Phil interacting with their different research assistants. Both exhibited some nervousness and yet would probably deny feeling anxious or nervous. Clark talks almost nonstop and starts with “I can run fast.” If he senses any interest he tells about the time he beat the person in the wheelchair. He has told this story (which I doubt since I never observed it) many times and realizes it usually brings a laugh. I noticed that when he repeated how fast he can run for the umpteenth time this morning the assistant starting telling Clark that he has run a few marathons. That sparked an interest in Clark and he asked a few questions before he told about Andy on his Special Olympics track and field team who has run the Boston marathon twice.

Phil’s anxiety manifested itself this way. He spent time examining a colorful toy fan while his assistant waited for him. Then he burst out in laughter which was louder than normal but which was still friendly and showed his interest in being there. Both were cooperative and especially happy when they were told they would each get paid.

Thursday, October 22, 2009

Chicken Noodle Soup and Phil’s Salad

As Clark went through the Safeway circular on Tuesday when it arrived in the mail he circled items that he wanted me to buy today when I went shopping. One circled item was a whole chicken, 69 cents a pound, locally grown, limit three. He thought it was a turkey (and indeed it did look like one) which required a repeated explanation each time he talked about buying a turkey. It has been many years since I’ve bought a whole chicken. I am spoiled on six-lb. bags of individually frozen chicken breasts at Sam’s Club. Today, however, I wanted to buy a whole chicken, slow cook it all day and have homemade chicken noodle soup for dinner along with homemade bread. Clark and I went to Safeway. No more whole chickens. We settled for chicken thighs at $1.18 a pound. Into the pot they went as soon as we arrived home for a slow simmer all afternoon. I put the ingredients for bread into the bread maker and pushed start. A half hour before dinner I fished out the thighs, let them cool a little and then took off the skin and deboned them and then put the meat and vegetables in the broth. It was a deliciously perfect meal for a cool fall day and a huge hit, second helpings attesting to that, with the entire family. I made enough for three meals, one eaten tonight and two to put in the freezer.

Sunday afternoon we met with four other families for our monthly dinner group. We were assigned to contribute fruit or a fruit salad. Stretching the definition somewhat we decided to take Phil’s favorite salad. On Saturday I sent him to the store, with his sister who drove, to get the ingredients. He found the items, bought them with his money and then came home to make the salad. I don’t know the name of the salad (it is more like a dessert) but in our family it is called Phil’s salad. We noticed for years that he loved this salad which usually just appeared on Thanksgiving and Christmas. After everyone would take a helping he would take the salad off the table, no seconds for anyone, and put it in the fridge so that he could enjoy it by himself the next day. A couple of years ago he started making it himself with my supervision. To Cool Whip you add pistachio pudding, crushed pineapple, Maraschino cherries, miniature marshmallows and nuts. It was a hit with our dinner group. Phil even got to take some home to eat later.

Friday, October 16, 2009

Two for Two


Earlier this week we traveled to Olympia to visit Pip and her family. We took a long walk to Capitol Lake and at the half way mark Clark had a grand mal seizure. He knows when a seizure is coming on so we are usually able to get him to the ground. Such was the case this week. It had been six months since we had taken another long walk in Olympia. Clark had a grand mal seizure then. Both times it required our son-in-law to catch a bus home and return with a car. We won’t stop taking long walks in Olympia in the future but we will certainly remember—two for two. Seizures have been a part of our lives for 35 years and I wonder if some strange movements when Clark was a baby were not seizures. He was diagnosed with epilepsy when he was almost four and has been on medication since then. Medications and the number of seizures have changed (increased) over the years. One rather dramatic event happened about ten years ago. I wrote an essay describing it.

"As dusk approached in the late afternoon of a chilly November day in 1999 our family gathered in downtown Seattle to hear our youngest child perform with the Northwest Girlchoir at the lighting of the Christmas tree at Westlake Mall. Thousands pushed in to watch and listen to performers and to sing together familiar songs. As we came to the last stanza of Joy to the World, our oldest, Clark, who is affected by fragile X, had a seizure. As we laid him down on the cold cement the ripples began. Like a stone thrown into a pond the place of entry is most impacted but the ripples are felt far beyond. Music filled the sky as the Christmas tree lights came on and fireworks went off and from within our encapsulated space my husband and I could hear “I’m a doctor. I can help.” “What can I do? I’m a nurse.” and the crowd moved back as they pushed toward us. We had handled hundreds of seizures but we were touched by strangers who reached out to us.

In quiet moments as a teenager I dreamed of college, marriage and future children and thought that ripples would indeed come from my bright, beautiful, well-behaved children. A secret, that I didn’t even know, was hidden within me which would not come to light for many years. Children I dreamed of would have a 50% chance of having fragile X syndrome—inherited mental retardation. And someday that 50% would play out and I would be the mother of children with fragile X because I was born a carrier. The secret would eventually be revealed.

Dreams became reality when college graduation came and then marriage and then one by one came six separate, individual children. And the years passed and we saw different ripples that extended outward from each one. Daniel Boone, American pioneer and trailblazer, said “I can’t say I was ever lost, but I was bewildered once for three days.” Our bewilderment lasted longer than three days but slowly we received answers to what was causing the differences and then one day we were told a name we had never heard of—fragile X syndrome. We have seen the ripples move outward, ruffling the water’s surface and it has been good.

As we knelt on the ground that day in November, encircling Clark, the final words of Joy to World repeated 'And wonders of His love, and wonders of His love, and wonders, wonders, of His love.'"

Saturday, October 10, 2009

Emergency Preparedness

Twice a year we refresh our 72-hour backpacks, a love/hate project. Refreshing them requires me to go to Sam’s Club in advance of the designated day for refreshing for a list of items I have finally written down on a piece of paper and put in a place where I will remember to look in six months. So last week I got out the list and took it with me when I went shopping. I was feeling quite organized as I put the items on the ping pong table. I asked, okay—ordered, Phil to bring in all the backpacks from the garage where they are hanging on hooks ready to be thrown in a car or onto a back in case of an emergency. You can almost always count on Phil to carry through with an assignment. Five of us assembled around the ping pong table to take out the old and put in the new. My job was to take the six-month old items (peanut butter, hot chocolate, packets of oatmeal, individually-wrapped beef jerky, gum, Crystal Light, etc.) and issue newly-purchased items to each person. It sounds so simple as I type this but this project has never been executed in a simple manner. Attention spans for some of us are not very long and so we tend to lose interest and wander. And it is chaotic and the table cluttered. One person can always be heard to say “Why is it I always have to do everything?” And I am not the one. Enthusiasm drains quickly and tempers flare but we can’t leave our ping pong table littered with food and other emergency items so we grit our teeth and get the job done. Just as we finished zipping up the last backpack one of us remembered that the seizure (and headache) medication had not yet been done. That too sounds simple but it is always deceiving. Six months will be here before we know it and we will have forgotten most of the negative details. Meanwhile, it is a great feeling to know that we are prepared.

Friday, October 9, 2009

A Wild and Crazy Birthday


It was Philip’s birthday last week and it was wild and crazy as usual. Why change a good thing?! Phil asked for tacos and a heart cake, chocolate with white frosting and his name spelled out in M&M peanuts. We had the entire family here—all 16 of us. We didn’t know that three of them were coming so it was a wonderful surprise. It just added to the excitement of the evening. After everyone was here and the prayer was said we consumed dozens of hard and soft shell tacos. Then there was the opening of gifts which also looked a lot like previous years—a shirt, DVDs, a microphone, money. Now for the finale, the singing of happy birthday (in opera and conducted by Phil) and the eating of cake and ice cream. Ahhh, it was another good birthday.

video

Sunday, October 4, 2009

An Excursion with Phil

Last week I had a short appointment at the dentist so I took Phil with me. That morning a lens had fallen out of his Dollar Store sunglasses so Phil wanted to go back to buy a replacement pair, maybe even two. My appointment was under 30 minutes during which Phil sat in the waiting room probably looking at pictures in the newspaper or magazines. As we were leaving we both received a key chain light from the receptionist. Phil loves key chains and showed obvious excitement at the unexpected gift. Our next stop was the bread store where we loaded up on bread to restock a few shelves in our freezer. Then it was on to one of our favorite stores, The Dollar Store. Phil did indeed buy two pairs of sunglasses, proudly modeling each, and I bought wrapping paper. As we drove home on this ordinary fall day I became aware of the leaves that were changing color, brilliant yellow now where there had been green just a couple of weeks ago, temperature in the 60s, not too hot and not too cold, clear skies, oldies music on the radio and my very happy son with two new pairs of sunglasses sitting next to me. There was simply no room for any sad or discouraging thoughts. For that short moment in the day all seemed right with the world.
This is a picture Phil took of himself with his sunglasses over his regular glasses.

Thursday, October 1, 2009

It Is Time

I awoke early this morning but we didn’t get around to breakfast until 11:30. Phil had asked the day before (as he often does) what we were having for breakfast the next day. I told him eggs, something he loves. So at 11:30 I fixed scrambled eggs. Four of us sat at the counter and ate eggs and English muffins, hot chocolate and juice. It was a filling meal. After cleanup I went to my desk to do some reading but Clark was in the study and on his agenda was talking. I would read part of a sentence and Clark would say something. I would mumble a response and go back to reading, half a sentence, until Clark would start in again. I decided I was not going to succeed in reading at the moment so I went downstairs to fill a bottle with water. There was Phil in the kitchen finishing up a sandwich for lunch. We had just eaten but that doesn’t matter. It was 12:30 and time for lunch. Then it will be time for a nap even though he slept in. Phil is very much aware of time but Clark is not. He depends on me to tell him when it is time to eat (even though he is very good about snacking on his own) or time to go to bed. They may both have fragile X and IQs about the same but they are different in so many ways. After shaking my head at Phil and reminding him that we had just eaten breakfast I went back upstairs where Clark was still in the study in talking mode. After encouraging him a number of times to go take his shower he finally left the study and I went back to reading.

Friday, September 25, 2009

A Day at The Fair

Excitement simmered for over a week after we decided on a day we were going to The Fair. That was two days ago. It was a practically perfect day in all respects, one to be repeated without hesitation. The morning was leisurely, enough time for exercise, breakfast and sweeping the downstairs floors so Clark could mop before we left. After an hour of travel on a warmish fall day and paying our $8 to park we (five of us) entered the Blue Gate and turned left into an exciting world of sight, sound and wonderful smells. We first went to hear Billy and the Hillbillies, we always do, but they weren’t there. We were pleasantly surprised by a family band. What a great way to start our day at The Fair, listening to the fiddle and watching a little tap dancing. Next it was on to the arena to watch Shetland ponies to Clydesdales parade right in front of us. I thought as I watched the drivers show their driving skills how different our lives are. I saw a few who looked to be about my age and wondered how much of their lives had been centered in raising and training horses with the days filling up and the years slipping by. I am glad we are all different.


Then it was on to kettle corn, a large bag to be shared as we wondered through buildings and stopped to vote for the best Grange display. We always do that, study each display to determine which one we individually want to vote for. What a lot of work goes in to each one! I never get tired of seeing how creatively an abundance of fruits, vegetables, eggs, nuts, and canned items can be displayed.


At 3:00 it was time to meet up with our youngest daughter, her husband and their eight-month old baby. I wonder when he’ll get tired of hearing how cute he is and getting lots of kisses. Now on to another tradition—the consumption of ice cream cones. Yum! Then it was on to more demonstrations of mops that will clean your floors, windows, or mirrors, pots and pans that can cook your vegetables with no water and cost only $400 at The Fair, Vita Mix that can pulverize your fruits and vegetables, seeds and all, and shammies of orange and blue that will suck a gallon of coca cola out of your carpet. We usually buy something.


To get revitalized we went back to the family band concert at 5:00. Of course, we were starving by the time the show was over so we hunted out something good to eat. Most of us settled on hamburgers with Walla Walla sweet onions and curly fries but two opted for teriyaki. After all of us were satisfied, we were ready for more demonstrations (and a few small purchases) before our finale—The Extreme Scream. This ride shoots you up 20 stories at 3 Gs and drops you at a negative 1 G. Wow! Pip and I went on The Big Sling a couple of years ago. This year we were able to talk our husbands into joining us. What a thrill and a perfect conclusion to our day at The Fair. And the bonus--Phil had not gotten lost (we have spent hours in previous years trying to find him).

Here is Phil's response to the concert.

video

And here is Clark's.

Saturday, September 19, 2009

"I'll miss you, Mom"

I must admit I have been somewhat discouraged and a little depressed the past day or two. Phil got laid off from his job of six hours a week at a fitness center and Clark was in the hospital for two days while Paul and I were in Mesoamerica. He wanted to go with us and would tell me numerous times a day “I’ll miss you, Mom.” We would talk about who would be here to take good care of him (his sister and two brothers who live about two miles from us). I even marked the calendar so he would know exactly how many days left until we returned. I realized he wouldn’t really understand when he saw my hand-written number on a date but I knew Cherlyn could at least say “See, they will be home in ten, five or three days.”

We’ll get to work next week on trying to find another job for Phil. Actually, we’ll work through DVR (Division of Vocational Rehabilitation). I always start off optimistic. Phil is energetic, dependable and personable. There must be some job, somewhere, in a ten-mile radius from our house. He worked at Deseret Industries for six years but that is no longer an option since their philosophy is “Deseret Industries is not a landing place; it is a place of training and transition.”

Clark is now doing well after his two days in the hospital from complications from seizures. It is probably a good thing that we could not be reached in Guatemala since there was nothing we could have done (except worry!!!). Our five other kids rallied and stayed with Clark 24 hours a day. As soon as we arrived home we got all the details. I heard the words they were saying but it took a couple of days to digest. My appreciation for them grew as I thought about the sacrifices they made as they took good care of their brother.

Yesterday I took a friend to the hospital for a test to find out if her cancer has spread further. She is about 60 and has been widowed for ten years. She has two children. She is estranged from one and the other, who lives in another state, is angry and in denial concerning her cancer which is very painful. Oh, that puts things a little more clearly in perspective. I don’t have much to be discouraged or depressed about.

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.

Monday, July 27, 2009

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.

Thursday, July 16, 2009

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.

Friday, July 10, 2009

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.

Friday, July 3, 2009

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.

Monday, June 29, 2009

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.

Sunday, June 21, 2009

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.

Sunday, June 14, 2009

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.

Saturday, June 6, 2009

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.

Tuesday, June 2, 2009

"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.

Wednesday, May 27, 2009

Time for another x-ray

At 9:00 this morning I waved good bye to Paul and Clark. They were driving to Burien where Paul has played racquetball every Wednesday for many years. He was going down to play and Clark was going down to sit. Most of us would not enjoy sitting in the car in the parking lot for two hours but Clark is content to just sit, unlike Phil. At noon they would be going to the hospital (Highline Medical Center) so Clark could have a chest x-ray. For the past few months he has seemed to be winding down, not wanting to go to Special Olympics, taking a long time to dress, not feeling well enough to go to church (which he normally hates to miss) and complaining about aches and pains in his side. I have often wished that I could slip into his skin for a few minutes to determine what it is he is feeling. We finally took him to his doctor who recommended a chest x-ray which showed a large abscess in one of his lungs, probably caused by aspiration after a grand mal. He has been on an anti-biotic for three weeks. If that does not clear it up he will have to have a bronchoscopy.

On Memorial Day we went to Olympia to visit our daughter, her husband Colt and our grandson. We walked over a mile to a restaurant and then on our return we took a detour so we could see Capitol Lake. Clark kept up. As we walked past the Capitol Building and into a residential area I turned around to see if Clark was still keeping up with the six of us. He was staggering. He was headed into a grand mal so we helped him lay down on the grass. After 15 minutes he was through with the seizure but not well enough to walk another mile. Colt ran home to get the car and returned to pick up Clark. It is interesting to me that Clark has the majority of his seizures (about eight seizure days a month) at home. Seizures have been part of the pattern of our lives since Clark was four and diagnosed with epilepsy which affects 20% of those with fragile X. Phil is not affected. Despite four different seizure medications he is not seizure free but he enjoys life and always prays fervently for help when he can tell he is going to have a seizure.

Wednesday, May 20, 2009

I Will NOT Take Chemistry

I resolved in high school that I would not take chemistry. I renewed that resolution in college and now I’m sorry. Well, not too sorry but a little. If I had known during those years that I was a carrier for fragile X syndrome and that someday I would have two sons with fragile X I would have been more highly motivated.

As a member of an advisory board, I spent this past weekend at a retreat at the University of Washington Friday Harbor Laboratories with scientists and geneticists from across the country for one of the three national Fragile X Research Centers, the University of Washington in collaboration with UC Davis M.I.N.D. Institute and Rush Medical Center in Chicago. I understood little of the scientific PowerPoint presentations made in the morning meetings. They revived a weak determination to read a short, very basic book on chemistry. My notes were mostly: look up hemi-methylated, crossover during PCR, isoforms, knock out mouse and more. The afternoon lectures were on newborn screening for fragile X, symptoms of FXTAS (Fragile X-Associated Tremor/Ataxia Syndrome—a disorder that can affect carriers), minocycline as a promising drug for patients with Fragile X Syndrome. I could understand a lot more in the afternoon. Tiina Urv (an Estonian name) from the National Institute of Health was there to make sure that money was being used as written in the grant proposal.

I realize I am not unique when I say that I didn’t know the route my life would take as I made plans during my teenage years. Many of those plans have come true (no chemistry classes for me amongst other more significant goals like marriage and children) but I continue to be amazed at what I have learned and experienced in having two sons with fragile X.

Wednesday, May 13, 2009

Walk to the Stream

About ¼ mile from our home is a stream that meanders through backyards and emerges at a turn in the road. In an attempt to get Clark and Phil to exercise more we require that they walk to the stream and back. The requirement used to be Monday through Friday but when Phil became employed his dropped to two days a week since he walked more than a half mile to his bus stop and back three days a week but Clark was still to walk to the stream and back five days a week. They never walk together. Phil wants the job done quickly; Clark would rather stroll. Clark has also decided that he would rather walk 1 ½ miles with me than walk ½ mile alone. A week ago I told Clark I would walk to the stream and back with him since I had already been out earlier. Part way there I picked up my pace in an attempt to get Clark to walk faster. Suddenly I heard Clark hit the pavement as his head brushed the back of my leg. I helped him to his feet. One hand and one knee were scraped but only slightly. While brushing off his sweats he said “That was not very fun.” and continued to say it over and over as he held firmly onto my hand. “I’ve fallen too and it isn’t very much fun.” I said in an effort to get the focus off his fall. “What happened?” he asked. I explained that there are uneven places on the sidewalk and his toe hit one of them. “I know who did it; It was some boys.” he said, trying to place the blame on someone else. This scenario was sounding familiar—the fall, murmuring about the pain, blaming others, the clasping of an extended hand to help us not do that again. By the time we reached home Clark was saying “I don’t want to fall again.”

Wednesday, May 6, 2009

A Trip to the Doctor

It is 4:20 a.m. and I’ve been awake for over an hour. Rather than toss restlessly I decided to come to the study but only after I checked Clark. He has been sick off and on for the past month or two and is not improving so we took him to the doctor, and family friend, yesterday . Normally, Clark’s anxiety about going to the doctor causes him to be defensive. From my March 2004 journal

“Dr. P. and his nurse earned their pay today when I took Clark and Phil in for physicals (Special Olympics requires one every three years). Clark did fine until he was asked to deposit a sample in a cup. He informed Jason (the nurse) he was going to call the police so Jason got me (I was in the waiting room).”

There was no success in getting a sample five years ago or yesterday. We were told that we could get a sample at home, put it in the fridge and bring it in today when my sweetheart takes Clark in to get a chest x-ray. Phil saw the successful sample later in the day and asked why there was pee in the fridge. He had his own problems five years ago at that same physical.

“Phil wanted me in there with him. When he was asked to walk on tip toes, his heels, etc. we did it together. Then Dr. P. wanted to check his eyes. ‘Open your eyes wide Phil.’ Phil opened his mouth wide and his eyes became slits. ‘This is serious, Phil. Open your eyes. Close your mouth.’ When he closed his mouth his eyes also closed. Dr. P. gave up. Phil is petrified of needles so I couldn’t imagine what he would be like when he had to have blood drawn and a tetanus shot. He wanted to hold my hand and then he was incredible. He pulled a face and jiggled his feet when he was having his blood drawn but he held his arm perfectly still. He was still for the shot. I was very proud of him.”

Even though I found this trip to the doctor hilarious, Dr. P., the nurse, and I were exhausted when the physicals were over. I was glad it would be three years before I would have a new "trip to the doctor" to write about.

Wednesday, April 29, 2009

I love Special Olympics


Whether it is bowling, softball or track and field I love Special Olympics. Clark and Phil are in the middle of the track and field season right now. They had their district meet last Saturday on a cool, overcast day at a local high school. Both won silver medals for relay races so now we are waiting to hear if this will qualify them for the state meet the last of May at Ft. Lewis, about an hour south of us.

When Clark started participating in Special Olympics about 25 years ago I would attend his meets and the tears would begin to flow. It was not because I felt sorry for the athletes but because of how hard they tried. Whether an athlete came in first or last it didn’t matter, each was a winner. Tears only come occasionally now but I do not stop being amazed at these special athletes who are not concerned about looks, clothes, breaking records, or endorsements. I have seen a young woman running the 100m and just about to cross the finish line in first place stop to help someone who fell. It cost her the race but I doubt if that ever crossed her mind. Someone fell and needed help. Another athlete at another meet was well behind all the runners when he fell. When he stood up he seemed disoriented and went back to the starting line where he began again, long after everyone in his heat had crossed the finish line. Everyone was cheering for him as he stumbled along and then he realized the cheers were for him and he smiled and continued on his way until he finished. These are the true heroes.

Clark and Phil’s main coach for all events is someone who has devoted her life to helping the handicapped. She had a group home until bad health stepped in but she has continued with Special Olympics, of course like everyone, as a volunteer. And there are other faithful volunteers who help Mary Ellen. The Special Olympics Oath is "Let me win. But if I cannot win, let me be brave in the attempt." Athletes and coaches alike are winners in my eyes.