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.

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.

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.'"

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.

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.

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.

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.