The following Saturday was the Washington Ferry Holiday Cruise sponsored by AFECT (Active Ferry Employee Charitable Trust). Paul, Cherlyn and I joined them for this excursion on a Washington State ferry which went half way to Bremerton and then back. We left our car in the parking lot and walked on—past employees, clowns, musical groups, Coast Guard and Marine volunteers. What a happy, festive atmosphere. Santa made his rounds passing out stuffed toys while we enjoyed being on the water and munching on snacks provided by the volunteers. When we disembarked 1 ½ hours later Clark and Phil each received a large stuffed animal donated by Toys R Us.
Tuesday, December 27, 2011
On the Receiving End
Sometimes I feel overwhelmed by the kindness extended to Clark and Phil’s community. A few weekends ago was Seafair's Annual Special People's Holiday Cruise - a holiday tradition! They boarded private yachts at south Lake Union with hundreds of their peers for a two-hour cruise of Lake Washington and Lake Union. When we picked them up at the conclusion they had on blinking Santa hats and a bag of goodies each. Their smiles told us they had had a good time.
Wednesday, December 14, 2011
This Is So Clark
This afternoon I went downstairs for a short nap and quiet time to work on the discussion I will be leading tonight on The Death of Ivan Ilych by Tolstoy. I had tried working at my desk but Clark sat down by me and couldn't stop talking. He had had a headache and the Excedrin he took killed the pain and kicked him into nonstop-talking mode. Some time later as I sat in the front room organizing my thoughts and writing down notes Phil came in to see what I was doing, then in came Clark and Cherlyn and finally Paul. As we talked and laughed together Paul started feeling drowsy. He stretched out on the couch and put his feet in Clark's lap. Forty-five minutes later Clark was still sitting there not wanting to disturb his sleeping father.
Sunday, December 11, 2011
A Very Happy Birthday
As I walked through the kitchen this evening to get to the garage (on my way to a Christmas Music Fireside) I noticed Clark’s birthday banner still hanging above the kitchen table. Thursday was Clark’s birthday. We knew he was excited because he talked about it every day for many, many days and then would ask “Are you excited for my birthday?” Birthdays are exciting around here and begin as soon as the birthday boy or girl awakens. “Happy Birthday” is spoken many times during the day. Lunch on this particular birthday was a trip downtown with Dad to eat lunch with #2 son who works there. Then at 6:00 the party began with requested hamburgers, chips and potato salad. Phil was the chef and the burgers were pronounced delicious! Then came the opening of gifts—a 100-piece puzzle, Cars 2 DVD, National Geographic DVDs, three packs of gum and a note with an invitation for a future golf outing with #2 son. Finally it was time for cake, a requested train cake. I chuckled as I read online that “Your preschooler will chuggah chuggah choo choo all the way with this choo choo train birthday cake.” My “preschooler” loved it.
Tuesday, December 6, 2011
A Night at the Theater
We took Clark and Phil to The 5th Avenue last Friday night to see Cinderella. It was a wonderful evening despite Phil’s day-long predictability “I’m not going!”. He means it. We don’t take him too seriously, however, because we know his pattern. He has said this for years. When he finally gets dressed (no jeans, shorts or tennis shoes allowed) he settles down. The boys don’t care that “after two thousand years of being passed down orally from generation to generation, Cinderella was escorted into the world of fine literature by Charles Perrault, whose writings started a new genre, the literary fairy tale.” When we got seated Phil became so excited. when he noticed two large monitors facing the stage by the balcony showing the conductor leading the orchestra. He sat sideways (we were on the 2nd row) so he could watch the monitors and also see the stage. People in back of us would turn to see what he was looking at and silently wondered why he was so interested in that. We knew. I know few people who can clap as loud as Phil can and he had numerous opportunities to demonstrate his talent. He joined the standing ovation at the conclusion. As we drove home, we knew it was unanimous; it was a great evening. As we drove down our street about 11:00 Clark asked if we could now watch an episode of Psych. What?!!
Monday, November 28, 2011
Monday Chores
“Clark, take your sheet and pillowcase off your bed so I can wash them—also your pajamas.”
“You just did wash them.”
“You are right, I did but that was last week and we wash sheets every week.”
He continues to stand by me, no movement to go to his room.
“I’m excited to visit Brett.” Clark informs me.
I count on my fingers “That’s not for another six months.” Too bad we couldn’t have kept the trip a secret. Now we will talk about it almost every day for six months. I’m glad he is excited and I am excited for the trip but I am not excited talking about it every day.
“Mom, what kind of Christmas present you want? What kind of book you like to read?” He goes to our bookcase, picks out a book and asks if I want that for Christmas.
“I already have that book.” He knows I like books so that was a thoughtful idea.
“Mom, tell Phil to turn down the TV. David (our neighbor) will hear.” In the background from downstairs we can all hear Phil whooping and hollering because the showcase is on The Price Is Right. Soon we hear loud laughter getting closer as Phil comes upstairs to tell us that “she won both showcases.”
“Whoa, that is really exciting! I wish I’d seen that.” I tell Phil. The laughter continues. The message has been delivered so he goes back downstairs. Meanwhile Clark declares that he is hungry and goes downstairs without going to his room to get his sheet and pillowcase. I’m hungry so maybe I’ll join him for a late breakfast.
Two hours later…
“Clark, take your sheet and pillowcase off your bed…”
“Mom, you have a headache?”
“You just did wash them.”
“You are right, I did but that was last week and we wash sheets every week.”
He continues to stand by me, no movement to go to his room.
“I’m excited to visit Brett.” Clark informs me.
I count on my fingers “That’s not for another six months.” Too bad we couldn’t have kept the trip a secret. Now we will talk about it almost every day for six months. I’m glad he is excited and I am excited for the trip but I am not excited talking about it every day.
“Mom, what kind of Christmas present you want? What kind of book you like to read?” He goes to our bookcase, picks out a book and asks if I want that for Christmas.
“I already have that book.” He knows I like books so that was a thoughtful idea.
“Mom, tell Phil to turn down the TV. David (our neighbor) will hear.” In the background from downstairs we can all hear Phil whooping and hollering because the showcase is on The Price Is Right. Soon we hear loud laughter getting closer as Phil comes upstairs to tell us that “she won both showcases.”
“Whoa, that is really exciting! I wish I’d seen that.” I tell Phil. The laughter continues. The message has been delivered so he goes back downstairs. Meanwhile Clark declares that he is hungry and goes downstairs without going to his room to get his sheet and pillowcase. I’m hungry so maybe I’ll join him for a late breakfast.
Two hours later…
“Clark, take your sheet and pillowcase off your bed…”
“Mom, you have a headache?”
Tuesday, November 22, 2011
"Isn't he so so cute!"
I read that in a mommy blog recently and had to admit that the mother was right, the mentioned and pictured baby was indeed very cute. And then I thought about my #1 baby who is about to turn 41. At times (not always I admit) I think he is so cute and I can’t believe I’m his mom and have been on this amazing journey for such an incredibly long time. For those with cute little cuddly toddlers this probably sounds pretty creepy and maybe a little weird. But he is my frozen-in-time son who is still innocent and still says sweet things to me as he gives me a hug and a kiss on the cheek. So, the next time you see someone with a noticeable disability who may seem a little disgusting in his looks, his dress, or his behavior remember there may be a mother at home who thinks he is so cute.
Clark with his nephew
Clark with his nephew
Tuesday, November 15, 2011
Almost Time
It is almost time for one of my favorite times of the day. We’ve eaten dinner, the kitchen is clean, Paul is playing racquetball and I’m working on a lesson for tomorrow morning. As soon as Paul comes in the door and showers we will all gather around the TV to watch an episode of Psych—all together laughing and commenting on what we’re watching and eating popcorn and making a mess that has to be vacuumed up when we’re finished. It is the end of the day, chores have been completed and now it is time to relax and enjoy being together. Last night we watched the last episode of Foyle’s War before the new season begins in 2012.
When we’ve watched all seasons of Psych we will find something else that will pull us together for a short time on evenings we are all home at the same time.
When we’ve watched all seasons of Psych we will find something else that will pull us together for a short time on evenings we are all home at the same time.
Sunday, November 6, 2011
A Gold and a Silver
Yesterday was the annual bowling tournament with Paul and me as cheerleaders. Clark and Phil were on different team, each bowling two games. Clark got the gold and Phil the silver. We celebrated after at the Golden Arches.
Sunday, October 30, 2011
The Hug
It started Monday morning after I had already left for my class. Paul received a call that one of our granddaughters was sick and would he pick her up from school. As he and Clark were returning home from picking her up he received another call that a good friend of ours whom we have known for over 36 years had just died and would Paul come to the house. He was within a few blocks so he turned the car around and went there to be with the daughter, a grown woman who had been living with and caring for her 90-year old father. The death was not unexpected. When they finished talking, the daughter asked if Clark who was sitting in the car with the sick one would like to come in and see her father. When Paul got to the car to ask, Clark was out of the car almost before he finished the question. Five minutes later he emerged and talked about our friend until they arrived home. A few days later the daughter, with a smile on her face, told us what had happened when Clark came into the house. First he hugged her and then proceeded to offer words of comfort and assurance and then another hug and he was gone.
Sunday, October 23, 2011
Nighttime Attire
Whether it is 24 degrees Fahrenheit outside or 94 degrees Clark wears sweats to bed and a short-sleeved tee shirt and socks and Phil wears black shorts and a polo shirt. I didn’t realize Clark was bundled up while we were on vacation until it was pointed out to me one morning that he had socks on (and perspiring). Consistency is important for Clark and Phil but there is also their innocent dependence on us, their parents, to help them see or understand something—like taking off your socks when you go to bed will help you feel cooler during the night when the outside temperature is over 70. I am ashamed to admit that I am still sporadically negligent in putting sunscreen lotion on them while we are on vacation and often when we are outdoors for a hike or bike ride. They would never think to put it on themselves so as a responsible parent I should but I even forget to put it on myself.
Tuesday, October 18, 2011
The Library
A library card is a must while we are vacationing. It was two years ago I discovered that McCall Smith had not stopped at five books in The Ladies Number One Detective Agency series so serendipity took over and my reading plans for vacation changed. Books I had brought to read were set aside. Part of the routine at the library is checking out movies so we have something to watch in the evening, all together, when the activities of the day have come to an end. One evening after dinner we walked to the library, all five of us. The library is two blocks away just off the trail that runs along the ocean. We found a couple of movies to last until we returned home and then we walked back, all together, in the darkness and the warmth, feeling safe and contented. Because the readers in the family always have a book they’re reading Phil usually checks out two books. Phil the nonreader now gets books without pictures he has found in the children’s section. He puts them on a shelf or in a drawer until it is time for them to be returned. Without being given the assignment Phil took it upon himself to be the person responsible for returning movies and books to the library, usually delivered while he was on his mandatory walk.
Saturday, October 8, 2011
Up the River
Here is something I wrote a while ago about another exciting excursion our family took in July.
"Yesterday was our kayak trip on the Wailea River, Clark and me in one kayak and Paul and Phil in the other. We paddled up the river about 30 minutes and then docked our kayaks on the shore,along with a dozen other kayaks already there, before we hiked a mile to Secret Falls hidden in the rain forest. A canopy of trees sheltered and shaded us most of the way as we crossed the river holding onto a rope, waded through a stream or two and scaled a steep part of the trail by holding onto tree roots.It was hard work at times but we were rewarded with a hidden waterfall that falls into an icy-cold pool. In a previous year we swam in it and stood for a few seconds under the falls while it pounded our heads.Before we started our adventure Phil had separated himself and was sitting on the dock alone. He was solemn and quiet but as soon as we joined him on the dock there were loud outbursts, laughter and slightly out-of-control behavior. “Phil, are you nervous about going in the kayak?” Without hesitation “Yesssss.” Clark’s anxiety showed on his face. We got into our life jackets, slid into the kayaks and were off, Phil laughing and Clark complaining. Clark and I have been partners before. I know the routine. We try to stay in the middle of the river but are soon visiting the vegetation overhanging the river. Clark’s grumbling begins as he tries to get us out of the branches and I start laughing. As soon as we’re out of the vegetation we try again. I’m feeling encouraged when we actually make it 50 yards before we’re back in the vegetation on the other side of river, then a repeat of the grumbling, the laughter. Eventually we make it to our destination, dock our kayaks and begin the trek. Two miles later, two falls on the trail and one fall in the river (Phil yanking on the rope in an attempt to knock Clark off his feet caused him to fall backwards) and many mosquito bites we were ready to tackle the river on our return trip. Clark’s anxiety was at a high. He was threatening to report my laugher to Bishop Biehl. I must admit my patience almost ran out but then the village appeared and we made it back to dry land without landing in the river. It was hard work at times and I was amazed at times at how well Clark and Phil did overall. We’ll do it again someday."Hard to imagine this happy face looking anxious.
"Yesterday was our kayak trip on the Wailea River, Clark and me in one kayak and Paul and Phil in the other. We paddled up the river about 30 minutes and then docked our kayaks on the shore,along with a dozen other kayaks already there, before we hiked a mile to Secret Falls hidden in the rain forest. A canopy of trees sheltered and shaded us most of the way as we crossed the river holding onto a rope, waded through a stream or two and scaled a steep part of the trail by holding onto tree roots.It was hard work at times but we were rewarded with a hidden waterfall that falls into an icy-cold pool. In a previous year we swam in it and stood for a few seconds under the falls while it pounded our heads.Before we started our adventure Phil had separated himself and was sitting on the dock alone. He was solemn and quiet but as soon as we joined him on the dock there were loud outbursts, laughter and slightly out-of-control behavior. “Phil, are you nervous about going in the kayak?” Without hesitation “Yesssss.” Clark’s anxiety showed on his face. We got into our life jackets, slid into the kayaks and were off, Phil laughing and Clark complaining. Clark and I have been partners before. I know the routine. We try to stay in the middle of the river but are soon visiting the vegetation overhanging the river. Clark’s grumbling begins as he tries to get us out of the branches and I start laughing. As soon as we’re out of the vegetation we try again. I’m feeling encouraged when we actually make it 50 yards before we’re back in the vegetation on the other side of river, then a repeat of the grumbling, the laughter. Eventually we make it to our destination, dock our kayaks and begin the trek. Two miles later, two falls on the trail and one fall in the river (Phil yanking on the rope in an attempt to knock Clark off his feet caused him to fall backwards) and many mosquito bites we were ready to tackle the river on our return trip. Clark’s anxiety was at a high. He was threatening to report my laugher to Bishop Biehl. I must admit my patience almost ran out but then the village appeared and we made it back to dry land without landing in the river. It was hard work at times and I was amazed at times at how well Clark and Phil did overall. We’ll do it again someday."Hard to imagine this happy face looking anxious.
Saturday, October 1, 2011
Another Birthday Celebration
A combination of having our #3 son and his family here from Australia for almost two weeks and Paul and me out of town for a few days my writing has been sparse. Before #3 son returned to Australia we celebrated Phil’s 35th birthday two days early. Initially when I told him what I had planned he informed me that the 26th was not his birthday. Then when he realized it was his party and he got to choose the food (tacos) and cake (a heart cake with his name written in M&M peanuts) he got into it. Everyone was there except our youngest and her family of four and #2’s wife who is working on an MBA. We don’t know how to have a quiet party and this one was no exception.
Let the wrestling begin!Here is Phil's thank you to an aunt and uncle who sent him some money ready to mail. He dictates his message to me. I type it on the computer and then print it. He then copies it onto the card so the thoughts are his and it is written in his own hand.
Let the wrestling begin!Here is Phil's thank you to an aunt and uncle who sent him some money ready to mail. He dictates his message to me. I type it on the computer and then print it. He then copies it onto the card so the thoughts are his and it is written in his own hand.
Monday, September 19, 2011
The Reassurance
We were on vacation. It was Sunday and we were in church where we felt the familiarity and were glad to be united with others in a peaceful atmosphere. I looked at my family and noticed Clark was wild-eyed, like he was on medication overdose. The frequency of these episodes has increased in the past year, coming a few times a month. I know what an overdose looks like. When Clark was a young teenager he was on Dilantin, one of his anti-seizure medicines. I couldn’t understand why he was falling over on his bicycle and acting tipsy and why his eyes were wild looking. We visited the doctor and were told this medicine can pool in his system so when we cut back on the amount he was taking he improved. But he has been off Dilantin for years.
We were in a Sunday School class in the chapel so I took Clark to the back pews so he could lay down if he needed to. I sat by him, putting my hand on his arm or back and watching to see what type of help he needed. Often his speech is slurred when he goes through this and in general he does not feel well but it only lasts a few hours and then may not return for a week or two. On this particular day with no other distractions I stared at Clark and tried to imagine what he was feeling and once again thought about his life. Life is good for him. He knows he is loved. I thought about his sense of security and confidence. And as I sat there watching his face a profound feeling of assurance and calm came over me telling me that I am where I am supposed to be, doing what I am doing, helping two special sons who have fragile X. Most friends my age are empty nesters but we never will be and I’m glad. From “A Journey Called Life” by an unknown author “Each of us is a vital thread in another person's tapestry. Our lives are woven together for a reason.”
We were in a Sunday School class in the chapel so I took Clark to the back pews so he could lay down if he needed to. I sat by him, putting my hand on his arm or back and watching to see what type of help he needed. Often his speech is slurred when he goes through this and in general he does not feel well but it only lasts a few hours and then may not return for a week or two. On this particular day with no other distractions I stared at Clark and tried to imagine what he was feeling and once again thought about his life. Life is good for him. He knows he is loved. I thought about his sense of security and confidence. And as I sat there watching his face a profound feeling of assurance and calm came over me telling me that I am where I am supposed to be, doing what I am doing, helping two special sons who have fragile X. Most friends my age are empty nesters but we never will be and I’m glad. From “A Journey Called Life” by an unknown author “Each of us is a vital thread in another person's tapestry. Our lives are woven together for a reason.”
Saturday, September 10, 2011
Heart Palpitations
Wednesday was a trip to the eye doctor for Phil and his driver—me. His anxiety was in full force from the time we exited the car in the parking lot and then re-entered it two hours later. This was his first time to Dr. M. In fact, he had not been to an ophthalmologist since he was a toddler. Phil was born with strabismus and had corrective surgery when he was nine months old so we spent many hours in the waiting room during the first three years of his life.
The visit on Wednesday was a routine eye exam but a new doctor and a new office presented perfect ingredients for anxiety. We entered the waiting room, signed in, and were handed a stack of papers to fill out and sign. When I returned them to the receptionist a few hours later Phil followed me and proceeded to kick me playfully in my posterior. My warning “That was not appropriate!” was greeted with laughter.
“Mr. Tucker” was soon announced. Phil informed me, the nurse, and the waiting room that he was not Mr. Tucker, he was Philip. He stood up and beckoned me to follow. I realized when I sat down in the exam room that my palms were sweaty and my heart rate had increased considerably. The nurse asked Phil to read the smallest line he could. She might as well have been speaking in Russian. She caught on quickly that that approach would not work. She then started showing him single letters in various sizes while repeating over and over “Keep your left eye covered. Don’t peek. Now keep your right eye covered.” When she finished I followed her out of the room and asked if Dr. M. would be able to handle Phil. She assured me he would. I had my doubts.
Next came the person to dilate his eyes. “Philip, open your eyes. Close your mouth.” “Philip, you must close your mouth and open your eyes.” “Philip!” As soon as she was able to get a drop in each eye Phil squeezed his eyes shut and started rubbing them. “Philip, you cannot do that. We’ll have to put more drops in your eyes. Close your mouth. Open your eyes.” Beads of perspiration stood out on her forehead after the third try which she deemed successful.
We were left alone until Dr. M. arrived. Phil examined every instrument, every button while exclaiming “This is big, where is the up/down button, this is for my chin, this is….” and on and on and on he went. Constant motion. Finally in came Dr. M. After they shook hands Phil immediately wanted to know if Dr. M. was married. “Yes.” “Children?” “Yes, in fact, it is my daughter’s birthday today. She is nine.” He had more questions but they waited until after the exam which was quick but thorough. On the way to the car Phil asked where Dr. M. parked his car and where is his house? I had to admit I did not know the answers to all his questions.
The visit on Wednesday was a routine eye exam but a new doctor and a new office presented perfect ingredients for anxiety. We entered the waiting room, signed in, and were handed a stack of papers to fill out and sign. When I returned them to the receptionist a few hours later Phil followed me and proceeded to kick me playfully in my posterior. My warning “That was not appropriate!” was greeted with laughter.
“Mr. Tucker” was soon announced. Phil informed me, the nurse, and the waiting room that he was not Mr. Tucker, he was Philip. He stood up and beckoned me to follow. I realized when I sat down in the exam room that my palms were sweaty and my heart rate had increased considerably. The nurse asked Phil to read the smallest line he could. She might as well have been speaking in Russian. She caught on quickly that that approach would not work. She then started showing him single letters in various sizes while repeating over and over “Keep your left eye covered. Don’t peek. Now keep your right eye covered.” When she finished I followed her out of the room and asked if Dr. M. would be able to handle Phil. She assured me he would. I had my doubts.
Next came the person to dilate his eyes. “Philip, open your eyes. Close your mouth.” “Philip, you must close your mouth and open your eyes.” “Philip!” As soon as she was able to get a drop in each eye Phil squeezed his eyes shut and started rubbing them. “Philip, you cannot do that. We’ll have to put more drops in your eyes. Close your mouth. Open your eyes.” Beads of perspiration stood out on her forehead after the third try which she deemed successful.
We were left alone until Dr. M. arrived. Phil examined every instrument, every button while exclaiming “This is big, where is the up/down button, this is for my chin, this is….” and on and on and on he went. Constant motion. Finally in came Dr. M. After they shook hands Phil immediately wanted to know if Dr. M. was married. “Yes.” “Children?” “Yes, in fact, it is my daughter’s birthday today. She is nine.” He had more questions but they waited until after the exam which was quick but thorough. On the way to the car Phil asked where Dr. M. parked his car and where is his house? I had to admit I did not know the answers to all his questions.
Tuesday, September 6, 2011
Exercising Still Required
A vacation is no excuse for not exercising and that included Clark and Phil who were required to walk every day. Excuses were abundant “But we’re on vacation.” “It’s too hot.” “My feet hurt.” “I don’t want to.” until they realized we meant what we said. They had to walk 1 ½ miles on a path that ran in front of where we were staying. “Okay,” we told them “you only have to walk to ‘Cat in the Hat’ and then you can come back.” Since they didn’t know what we were talking about we walked with them the first time to point out the turnaround point (1 ½ miles roundtrip).Phil is a no nonsense guy. If he knows he has to do something he gets up and gets going so when he would leave Clark behind Clark decided he would rather walk three miles with Paul and me than 1½ miles on his own. There was an unexpected bonus to walking with us. He could throw rocks to the rocks below when we stopped to watch the ocean. It was a good vacation with a few miles put on our feet.
Sunday, August 28, 2011
A New Tradition
Vacations are made for memories. On our most recent vacation we began what I think will become a tradition. Here is what I had to say last month. “Today it was a two-hour bike ride on the paved trail along the ocean which started out on a sour note. I failed to keep track of Philip and, as a result, we spent a considerable amount of time and energy looking for him. What’s new? We often lose him. You would think we would just expect it and increase our vigilance but we forget how slithery he is. Since he can never explain where he was when he wasn’t with us Paul and I try to put together a scenario that satisfies our curiosity. Usually a threat works after that—no ice cream tonight (a nightly treat while we are on vacation) if you do not stay with us until we return the bikes. He stayed with us until the bikes were returned but in his hurry to get back to our unit so he could watch TV he missed out on huge snow cones (shaved ice at Ono’s) with ice cream in the middle which delighted the tongue while cooling us off.”
Wednesday, August 24, 2011
Changes
I was gone all last week—three days to the MIND Institute and then a day in San Diego for a board meeting. So, Monday meant a trip to Sam’s Club to replenish cupboards and get new glasses for Clark. He has been without them for weeks ever since the frame broke. I thought we would get the same type as his old—wire frame. The thought came to me that I should get his opinion. “Clark, which glasses would you like?” A large smile spread across his face. “Just like Daddy’s.” he said without hesitation. So that’s what we picked out.
The young woman who was helping us smiled and commented on how sweet his comment was. I could tell she was enjoying him. Because he was feeling happy I got a hug, kiss and an “I love you.” Some change is good.
On the other hand, we are remodeling the “boys’ bathroom.” This change brings a high degree of anxiety for Clark as tile, linoleum, the toilet, the counter are removed. The foreman told me that Clark has talked to him about reporting this to someone in authority. Fortunately, John, who has a son with Asperger’s Syndrome, is very understanding and patient and even took Clark into the bathroom to explain what he is doing and how he will fix all the holes. Even though this is a good change, it brings with it anxiety and internal turmoil for one member of our family.
The young woman who was helping us smiled and commented on how sweet his comment was. I could tell she was enjoying him. Because he was feeling happy I got a hug, kiss and an “I love you.” Some change is good.
On the other hand, we are remodeling the “boys’ bathroom.” This change brings a high degree of anxiety for Clark as tile, linoleum, the toilet, the counter are removed. The foreman told me that Clark has talked to him about reporting this to someone in authority. Fortunately, John, who has a son with Asperger’s Syndrome, is very understanding and patient and even took Clark into the bathroom to explain what he is doing and how he will fix all the holes. Even though this is a good change, it brings with it anxiety and internal turmoil for one member of our family.
Monday, August 8, 2011
What Next???
When Phil was 18 and in the high school transition program he volunteered (actually he was in training) at the headquarters for Safeco Insurance which was about five miles from our house. The dress code was shirts and ties for the men and that included him. He looked so handsome and professional. His main responsibilities were in the cafeteria cleaning tables and filling salt and pepper shakers. One morning he came down for breakfast before going to catch his bus. His left eyebrow was gone.
After the shock drained I finally sputtered out “What happened???”
“I don’t know.” He gave his usual response.
We put together the scenario. Phil had an electric shaver. As he shaved and watched himself in the mirror he shaved higher and higher. “Hmmm, I wonder what would happen if I….?”
We penciled in his eyebrow for weeks until a new one grew back.
Then when he was in his early 20s and working at a thrift store he wanted to see the effect that same razor would have on his head. Taken from my journal on May 20, 2000—
“Phil mentioned this week that ‘Adam cuts his own hair.’ I did not recognize the comment as a foreshadowing but it was. Pip and Jessica found him (in the bathroom) and had to clean up what he did. He is not completely bald but almost. ‘I like it!’ Phil told me.”
Phil and a good friend of the family
Last Friday I cut his hair. When I finished and was just about ready to do the trim work my attention was diverted while I visited with my daughter. Phil took the trimmer out of my hand and faster than my reflex he made a fashion statement.
After the shock drained I finally sputtered out “What happened???”
“I don’t know.” He gave his usual response.
We put together the scenario. Phil had an electric shaver. As he shaved and watched himself in the mirror he shaved higher and higher. “Hmmm, I wonder what would happen if I….?”
We penciled in his eyebrow for weeks until a new one grew back.
Then when he was in his early 20s and working at a thrift store he wanted to see the effect that same razor would have on his head. Taken from my journal on May 20, 2000—
“Phil mentioned this week that ‘Adam cuts his own hair.’ I did not recognize the comment as a foreshadowing but it was. Pip and Jessica found him (in the bathroom) and had to clean up what he did. He is not completely bald but almost. ‘I like it!’ Phil told me.”
Phil and a good friend of the family
Last Friday I cut his hair. When I finished and was just about ready to do the trim work my attention was diverted while I visited with my daughter. Phil took the trimmer out of my hand and faster than my reflex he made a fashion statement.
Saturday, August 6, 2011
The Apology
When our doorbell sounded a few days ago I opened the door to a neighbor who stood there with tears in her eyes. She wanted to talk to Clark. She told me she had been unkind to him and wanted to apologize. She admitted that all his talking drives her crazy. I was surprised at her honesty but went on to agree that there are times when it drives me crazy. It’s like a scratched vinyl record. The needle tries to move on but keeps falling back into the scratch and repeating over and over until you lift the needle. Clark and I had stopped to talk to her a few days ago. She was complaining about an acquaintance who she was very annoyed with and ended up calling him a swear word. Clark cannot tolerate swear words. He started to lecture her and I had an obligation I had to get to so I left. That’s when she must have been unkind. I called Clark to come downstairs to talk to her. He asked me to leave. I did. Soon she was gone and Clark was telling what a nice person she was and that he gave her a hug. He has always been quick to forgive.
Saturday, July 30, 2011
A Wonderful Summer Day
I love Special Olympics! I’ve said it before and you will hear me say it again. I especially love it on a warm spring or summer day. At 7:00 this morning I went downstairs and found Clark sitting on the couch, dressed and ready to go. We wouldn’t leave for another 1 ½ hours. Even then we arrived early for the district softball tournament. It gave Clark and Phil time to hang out with friends and it gave Paul and me time to sit in the shade and read before their first game. Because we don’t expect their team to play like professionals we get very excited over many small things that they do like getting a hit or catching a ball or throwing the ball and putting someone out. They played three games spread out over the day so Paul and I had time for a short snooze, time to watch people, time to drive to Taco Bell for lunch (the teams were fed at the ballpark), time to visit with friends we have made over the years, and time for more reading on the grass with bare feet. Soon the games were over and the awards given (their team received the bronze in their division and will not be going to state), pictures taken and we were driving back home, exhausted and happy. In another year we will be back again, doing the same thing and loving it as much.
Clark made it to first a couple of times.
Phil loves the catcher's gear.
My two amazing sons.
Clark made it to first a couple of times.
Phil loves the catcher's gear.
My two amazing sons.
Wednesday, July 27, 2011
Warning Sign
Sunday, July 24, 2011
We're Home!
After over a month away from home and sporadic Internet service we are home—to all that awaits when you’ve been away for that long. It has been said that a vacation (actually all of our time away was not vacation, some was volunteer work) is most needed when you’ve just returned from one. Just because you are away does not mean that everything will come to a standstill. The fact is we’re not feeling too sorry for ourselves, just overwhelmed. I’ve noticed that Clark and Phil do not feel the weight. They adjust quite easily. Life just goes on for them, only in a different location. Their anxiety manifests itself in the transition from one location to another. And for them it is really good to be home as long as they are with us. I wrote and took pictures while we were gone which I will post over the next week or two.
Of course the lawn refused to stop growing while we were gone. Our #2 son mowed part of the lawn while we were gone but the lawnmower broke. Fortunately a new one had already been purchased but needed to be put together when we got home. Here is Phil, who always mows the lawn, receiving instructions on using the new mower.
The garden which we didn't plant this year was thick with weeds. A few volunteer tomato plants were found in the growth.
While doing yard work time was taken to eat and watch a Pioneer Day Commemoration Concert. Clark didn't last very long.
Of course the lawn refused to stop growing while we were gone. Our #2 son mowed part of the lawn while we were gone but the lawnmower broke. Fortunately a new one had already been purchased but needed to be put together when we got home. Here is Phil, who always mows the lawn, receiving instructions on using the new mower.
The garden which we didn't plant this year was thick with weeds. A few volunteer tomato plants were found in the growth.
While doing yard work time was taken to eat and watch a Pioneer Day Commemoration Concert. Clark didn't last very long.
Tuesday, June 28, 2011
"Is my mouth crooked?"
That is what Clark asked me yesterday. I looked at him, trying to figure out why he asked that question. I smiled and told him “no” that his mouth was not crooked. A short while later the question came again. “Is my mouth crooked?” as he pushed his face up close to mine. I again smiled and told him no. Soon he was at it again “Is my mouth crooked?” I tried to reassure him it wasn't. When I looked at his furrowed brow I could tell he was not convinced so I took his jaw in my hands and making loud machine-like noises I pretended to straighten his mouth. He smiled. I smiled. And Phil burst out laughing. “Do it again.” Phil commanded. I did. It must have worked; Clark stopped asking if his mouth was crooked.
Tuesday, June 14, 2011
A Trip to Olympia
A quick day trip to Olympia last fall yielded fond memories and two wonderful pictures that serve as a reminder of a time when a one-hour drive would physically connect us with our youngest daughter, her husband and two very cute grandsons. Clark and Phil had bowling that day from 9:00-noon and then we traveled south where we visited while grandsons slept. For a very late lunch we decided to pile in the van and go to Herfy’s, a couple of miles away, nine of us in a seven-seatbelt van. Here is Phil sitting in the very back where we usually put groceries. It is not hard to tell that he enjoyed his “special” seat.
Clark is holding the hand of a very compliant 21-month old.
Clark is holding the hand of a very compliant 21-month old.
Thursday, June 9, 2011
Where is the 2?
I checked on Clark one morning while he was on the treadmill doing three miles an hour at a 12% incline. He is usually sweaty when he finishes. He had gone over a mile but has to go two so I left him and went outside for my own walk. When I came back in the house a while later I could hear the treadmill. “He must have gotten off while I was gone and has just gotten back on.” I went in to check. He was up to almost four miles and was dripping wet and telling me he had to go to the “2.” Months ago I put an arrow by the first digit in distance so that he would know when he could press stop. Somehow he had gotten sidetracked and missed the “2” and was still full of hope that he would see it. I wondered how far he would have gone if I had not gone in to check on him again.
Friday, June 3, 2011
Another Combined Effort
When you are married to a concrete sequential you can expect to see “detail the cars” come up on his radar once a year. Today was the day—a day scripted for car washing, waxing and detailing—70 degrees and sunny. The energy level was high when the five of us went outside at 1:30 to begin and completely gone when we picked up the last rag and put away the Turtle wax at 5:30. By then patience had been stretched so thin it snapped. I had taken out my CD player so we could listen to an eclectic selection of Brazilian music, Hawaiian music and music from the 60s. We sang along and did some dancing when we weren’t quite so intent on our own specific job. But even music didn’t help when the afternoon wore on and on. Was it worth it? We saved hundreds of dollars and probably did a better job than a professional detailer but most important was the working together as a family. And the cars do look great! And we don’t have to do this for another 12 months.
Subscribe to:
Posts (Atom)