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.