A Week in the Lives of Clark and Phil

This is not a complete list but it gives a good idea of the things Clark and Phil are involved in during a week:

Helped carry down boxes from upstairs which were filled with fragile X stuff for our annual conference, loaded the van and then went early with me to Children’s and carried in the boxes and helped set up

Helped set up at our house for a dinner group of 15 plus a family birthday party of nine a few days later (Phil barbecued the pork chops)

Helped with shopping at Sam’s Club and Target

Watched about 20 hours of the Olympics together as a family in the evening

Made popcorn for everyone in the evenings while we watched the Olympics

Made beds

Changed sheets on Monday

Vacuumed their bedrooms on Monday and the upstairs and downstairs on Friday

Cleaned bathrooms

Set the table for meals

Cleared the table daily

Unloaded the dishwasher daily

Helped a new neighbor move in

Went to two doctor appointments

Folded laundry

Helped with yard work

Helped make chocolate chip cookies

Fixed breakfast of bacon and eggs

Got mail daily from our locked mailbox at the end of the street

Washed the cars

Went to church, put up hymn numbers, passed out bulletins, helped with the Sacrament and lead the singingI am very proud of my "boys."

Another Excursion

Three years have come and gone and it was time again for Clark and Phil to get physicals if they want to participate in Special Olympics. And they definitely do. Today was their day to visit the doctor who is also a personal family friend. The four of us (Paul, Clark, Phil and me) left the house at 9:00 a.m. to drive 45 minutes south to Dr. P.’s office. The ride down did not prepare us for Phil’s behavior when we got there. Once we parked the car though it became evident that he was getting out of control. We all tumbled into the waiting room together, loud and noisy. The receptionist even said “I thought I heard the Tuckers coming.” After getting “The Boys” to open their wallets and give up $12 each for co-pay Phil headed to the children’s corner where there were toys and books. He was interested in a toy computer which spoke loudly to everyone in the waiting room. He set it down and it was immediately snatched up by a two-year old who dragged it with him into another room. Meanwhile Paul and I were filling out forms with at least 200 questions that could not be answered right off the top of our heads. I am still not sure why we told the nurse when she called our name that we would all come together. After the weigh in we were ushered into a 5x5 exam cubicle with only two chairs. It was then that I noticed how serene and peaceful Clark looked, just like we had drugged him. Phil had enough energy and anxiety for both of them. He could not stop talking, his face was flushed and he was touching everything. Finally, when the room temperature reached 90, Dr. P. came in. He has known all of us for years and that is a good thing. He and his wife have eaten at our house and we have eaten at theirs. He spent thirty minutes asking questions before it was time to examine Clark. Phil and I decided to go to the waiting room until it was time for him to be seen. That was a good decision. He calmed down after I got upset with him for not leaving a sample in a cup in the bathroom even after I got him the cup and reminded him of what he was to do. Come to think of it, I don’t think he has ever performed that task. Two hours after we arrived we said good-bye to Dr. P. and went out to lunch in celebration and then home to take a nap.

We Need Quiet!

I am going to try and explain some Clark behavior that pushes us (his parents) up to and beyond our patience endurance level. He can’t read (except for a few words) but he wants to know what we will be reading in Sunday School. I never thought he would be able to find books in the scriptures but he has gotten pretty good. This Sunday we will be in Genesis 14 and he found it. Amazing! The problem is—he wants to talk about it and show it to us over and over. This type of behavior happens many times each day, every day. Remember perseveration from the February 9 post?! Knowing he perseverates helps explain why he keeps showing (or talking about) something but it doesn’t help us when we are in the study and want it quiet so Paul can work on his Sunday lesson and I can prepare for my Institute classes. When Clark tries showing me for the umpteenth time and can sense my patience has come to an end he calls me grumpy (and that is exactly how I am feeling at the moment even though I have managed to stay calm). Then he walks over to Paul. I can hear “Not right now Clark. We need quiet.” “Clark, no more. Stop! We will talk later.” The same things I had just said, and then from Clark, “Grumpy Old Man.” Meanwhile I can hear whooping and hollering from downstairs where Phil is watching The Price Is Right.

Two Excursions Today

The first excursion was this morning with Clark for an appointment with a new neurologist. Well, not a new one but a second-opinion neurologist, one who works with special needs children and adults. We went to the autism center to meet Dr. S. and to give Clark’s medical history so hopefully we can better understand what has been going on with him this past year with an increase in the number of seizures each month and periods of malaise. Clark’s anxiety kicked in before we left the house at 8:30 so that we spent time while driving there reassuring him that we would be with him, that there was nothing to worry about. Ha! When we entered the autism center Clark’s face told me he was not convinced and not only that he was going to report this to Mary Ellen (his Special Olympics coach). I had not heard him use her before. When Clark was in high school he always said to his teacher, Mr. H., that he was going to tell his dad. Whenever he was anxious about something at home he threatened to tell Mr. H. or the police. As I approached check in the receptionist greeted me warmly and then looked at Clark and talked to him with friendliness that briefly melted his anxiety. After forms were signed we met Dr. S. We liked him. His sincere interest in us with good eye contact gave us hope that we might get some answers to our concerns. He had concrete suggestions (like an EEG and blood work, etc.) that we will follow up on.

The second excursion took place mid-afternoon. I took Clark and Phil shopping for their sister’s birthday which is tomorrow. We went to Target where Phil pushed the cart with my purse in it. Shopping with them is always fun but stressful because trying to keep them focused on gifts when they have no idea what Cherlyn would like can bring on a headache and I could feel pressure mounting. After finding Phil who was so engrossed in watching the human and cart escalators he could not hear me, we found gifts and headed to checkout. Phil had the car keys so as soon as he paid he was gone, out the door. We found him in the car down four levels in the parking garage. As we pulled out of our parking place Phil opened the passenger door and yelled so he could hear the echo. That was repeated a few times until we were out of the garage. Clark was in the backseat with his strong sense of what is right and what is wrong and what Phil was engaged in was clearly not right and he needed reprimanding and then Clark needed reprimanding—from me. Tomorrow before the party I will help them with wrapping.

Two Hours till Dark

I didn’t know when I awoke in the morning a year ago today that something would happen in the afternoon that I would put in the heart-pounding, scared out of my wits category. Phil usually arrived home from work at 1:35. He would take my cell phone with him in case he needed to call and that day he did. His 2nd bus did not come. Cherlyn and I looked up the route and found out that he had actually missed two buses and would need to wait another 15 minutes for the next bus. I called him back “Where are you, Phil?”

“Waiting for the bus. I don’t see it.”

“Wait a few more minutes and I will call you back.” After a few minutes I called again. “Where are you now?”

“Waiting for the bus.”

Now I am concerned. “Do you know where you are?”

“No.”

“Can you see any buses?”

“No.”

“Can you see a bridge (pedestrian)?”

“Yes.”

We were making progress and I thought I knew where he was. I decided to pick him up on Campus Parkway 15 minutes away but I couldn’t see him. I called again.

“Where are you, Phil?”

“I don’t know.”

“How will I find you?”

“I have my hat on.” I couldn’t find him and was beginning to grow more concerned. There would be two more hours of daylight. His work was ten miles from our home and he took two buses. I called Paul who had been gone much of the day. Numerous prayers were offered. We decided I would drive all around the University District and then take the bus (Metro) route to Phil’s work. Paul, with Heavenly Father’s help, was able to get a Metro telephone number where an actual person answered the phone. The person who answered was curt as he asked Paul how he got that phone number. Paul explained the circumstances and the curt Metro man became a help. Paul described Phil (same attire whether it is summer or winter--shorts, a polo shirt and a baseball cap) and the Metro man sent in Phil’s description to buses that run that route. Meanwhile I had driven almost to his work when Paul called to tell me that the regular bus had had to take an alternative route because of an accident on the bridge. I followed the alternative route, stopping at McDonalds for a bathroom break. When I got back in the car the phone rang. I had taken another cell phone since Phil had mine which had died an hour earlier so that we had no contact with him. Just as Paul was traveling the bus route (from the other direction) he got a call from Metro—they found him. After waiting two to three hours Phil had gotten back on a bus traveling toward the University District. The amazing thing is he would have eventually made it home on his own. What happened is that when the bus took an alternative route, he, not recognizing the new route nor understanding the reason for it, got off miles from where he normally makes a transfer.

At one point when the phone was still working, I asked Phil if he could see any street signs. “No” he told me. I would have had him tell me the letters which would have helped me identify where he was. I then asked if there was anyone he could give the phone to. Initially he said no and then I heard him say--

“Sir? Talk to my mom?” I could feel a spark of happiness and hope. And then I could hear a man say that he had to finish his job. I am sure the man couldn’t begin to understand why Phil would want him to talk to someone on his phone. Phil is conscious that people have a hard time understanding him so the fact that he would try giving the phone to someone is pretty amazing.

We had about an hour left of daylight when we arrived home. I was so grateful for Heavenly Father’s help in finding him!

Happy Valentine's Day

For the past two days Clark has talked about Valentine’s Day. “What am I going to get you?” was more a statement than a question. Clark and Phil are dependent upon mostly me, but also a sister and father, to make sure they have cash (from their own savings), to drive them to a store, to help them pick out a gift, and then to go with them through checkout to make sure they give the cashier enough money. After the question Clark had an idea which was revealed innocently. Our church meetings are in the afternoon this year so Paul and I were ready to go on a walk this morning. When we attempted to enter the kitchen before we left we were stopped by the guard—Cherlyn. We could smell good smells and told her we would be back in an hour and to make sure the heat was turned down. When we returned, breakfast awaited us—bacon, eggs, muffins and hot chocolate. Clark the chef greeted us with “Happy Valentine’s Day” and a kiss for me. Actually I received a lot of kisses and “I love you”s. We sat at the counter while Clark sat across from us, smiling and watching us intently, and repeating many times “Do you like it?” “We love it. It is delicious. Thank you, Clark, you did a great job!” And he did. We meant it. Even more important, it was prepared with love.

Perseveration

: continuation of something (as repetition of a word) usually to an exceptional degree or beyond a desired point (Merriam-Webster Online Dictionary)

“For males with Fragile X, the primary language difficulty is perseveration. Perseveration is the inability to complete a sentence because of continuous repetition of words at the end of a phrase. Another language-based behavior displayed by males with Fragile X is talking inappropriately and incessantly about one topic. This particular difficulty distinguishes males with Fragile X from individuals with other forms of mental retardation or autism.” (“Facts About Fragile X Syndrome” from the Child Development Institute)

We noticed from the time Clark was young until right this minute that he perseverates, “beyond a desired point.” Wanting to go to Idaho with us (“You don’t care! post on January 31, 2010) is an example. He really likes motor homes. A good friend gave him motor home catalogues a number of years ago. He would pour over them and then one day a daughter and I were deep cleaning his room and gave them away without his permission. I wish I could go back and redo that sad decision. One year our family took a two-day trip in a motor home just for Clark. He continues to talk about motor homes and can’t wait until he can buy one (in the Millennium we constantly remind him).

When one of our sons moved out of the country he asked if we would keep his treadmill until he and his family return in three years. We consented and have been pleasantly surprised at how much use it has gotten. Clark gets on it most days, three miles an hour at an incline, but Phil only sporadically uses it. One morning after I had been out of the house I checked on Clark and found he had been on the treadmill for 80 minutes. That’s perseveration in action. Most days it is 30-45 minutes.

In preparation for our conference (Fragile X Association of Washington State) in 1 ½ weeks we are sending out a newsletter which contains articles and a reminder of the conference. Clark is a great help as he sits for hours putting on address labels and stamps and then folding the newsletters into thirds and stuffing them into envelopes. I have gone to bed before and left him sitting at a desk working on this project and also have found him there the next morning as he began a new day. Perseveration isn’t always annoying or trying.

Pregnant Pip works at the computer while Clark puts on address labels.

Sweetness and Little Cupcake

The bowling season is now over until August when it will start up again. Track and field will start mid-March and end the first weekend in June and then softball will go through the summer. The grand finale for the bowling season was a pizza party at the bowling alley and I got to go. Cherlyn took “the boys” to the bowling alley at 9:00 while I went to the mall with Pip who was shopping for a dress she’ll be able to wear for the rest of this pregnancy. No luck. But that didn’t matter because really it was not the most important reason for going to the mall. We were there an hour and then it was time for me to join the boys for the party. I called Phil (he had my cell phone) to see if the party had begun. When he answered the phone he said “Where are you Sweetness?” I smiled when I heard this endearing name that he occasionally uses for me. He is the only one who can use that name. He is the sender and I am the receiver. I call him “Sonny” and I am the only one who can call him that. I am now the sender and Phil is the receiver. Paul has tried but Phil reminds him “Hey, only Mom can say “Sonny.” Clark started calling me “My Little Cupcake” a few months ago but he is not possessive. I don’t know where they’ve come up with these names that they claim but I like them. They make me feel loved.

Job Training

I went to a meeting this morning at the hospital where our fragile X meeting (planned and sponsored by Fragile X Association of Washington State) will be held in less than three weeks. We have been working on this for almost a year when the first agenda item was accomplished, reserving the room. Next, speakers were arranged and now we are working on additional publicity (to parents, teachers, professionals) and other details that need to be attended to. It was a necessary, worthwhile meeting. I went with one other board member and after the meeting we went to central supply to see her 20-year-old son with fragile X who works there as part of his job training. He has an appealing, quiet, shy nature and characteristics that remind me of my two sons with fragile X. I remember well when Clark and Phil (at different high schools) went through job training. They worked in small groups with job coaches at hospitals, a laundry facility, a warehouse and other places I can no longer remember. These experiences are for students with disabilities to prepare them for life after 21 when they will hopefully enter the job market. Clark worked at Deseret Industries (a thrift store) for almost eleven years and Phil for six years. Phil went on to work at Denali Fitness until he was laid off after 1 ½ years. Now they are both fulltime stay-at-home sons. Clark will probably never be employed again because of seizures and anxiety but I have hope that Philip will. All the work training they have had in the past 20 years has helped mold them and train them for work at our house. They could not articulate that these jobs help them feel confident and worthwhile but I know the jobs do and that carries over into other aspects of their lives. They still need supervision and reminders with some jobs, which can require a lot of work, patience, and long suffering for the parents as those with small children understand, but other jobs they can do on their own and that brings happiness to all of us.

Here is Clark sanding boards while Phil is washing cars.