Wednesday, September 29, 2010

It Was a Happy Birthday

It was a wonderful day yesterday—Phil’s 34th birthday—with a family party starting at 6:00. Unlike last year’s party with all of us here we were minus two families who would have added nine to our group of nine. Most birthday requests are predictable but this year Phil broke with tradition (tacos and a heart cake) and asked for hamburgers and mud pie with his name spelled out in M&M peanuts. His sister made the mud pie which was, of course, a huge success. Candle decoration was provided by the two attendent nieces. Clark donned his green apron and did the barbecuing. His diligence produced perfectly cooked burgers which we raved about. After dinner Phil brought the presents to the table. He received shirts and shorts (which he wears all year regardless of the weather), a DVD (The Prince of Egypt) and a can of cashews and a 2-liter bottle of diet Sierra Mist from Clark. As soon as the wrapping paper was gathered and placed in recycling he went upstairs to put gifts away (that is tradition). Phil with two of his nieces
From my 1987 journal—
"My Phil-Bill is now 11. He chose tacos and a bear cake. After he opened his presents he disappeared. I found him in his room eating his peanuts, listening to his new tape. He was all by himself so I sat on the floor by him while we sang along and he tried on some new socks. He also had his new tape holder and VCR movie which Brian (a friend) gave him."

Monday, September 20, 2010

Mister Rogers Is Back

Or at least I thought so. Phil was watching The Price Is Right with Drew Carey who has lost weight. I was upstairs when Phil appeared and excitedly told me to come downstairs and see. So I did and he has—80 pounds. Anyway, after the show was over last Friday Phil turned to PBS and we both heard.
It's a beautiful day in this neighborhood,

A beautiful day for a neighbor,

Would you be mine?

Could you be mine?

It's a neighborly day in this beautywood,

A neighborly day for a beauty,

Would you be mine?

Could you be mine?

I have always wanted to have a neighbor just like you,

I've always wanted to live in a neighborhood with you.

So let's make the most of this beautiful day,

Since we're together, we might as well say,

Would you be mine?

Could you be mine?

Won't you be my neighbor?

Won't you please,

Won't you please,

Please won't you be my neighbor?

Yes, we would love to be his neighbor. Phil clapped and cheered—Mister Rogers was back after a year-long hiatus. I clapped and cheered. Then I looked at the KCTS 9 Viewer Guide and Mister Rogers is on Fridays only. Phil didn’t seem to mind when I told him. He is just plain happy to see him again.

Friday, September 17, 2010

The Return

After being out of the country for ten days I am feeling overwhelmed by all that did not come to a standstill while we were gone. It has been repeated often—the time you need a vacation is when you’ve just returned from one. What you need is a week of no outside responsibilities, just being at home to attend to the accumulation and the most important thing—paying attention to neglected children (two sisters manned the homefront while we were gone). We walked in the door with suitcases, bags and coats and were greeted by a clean house and two happy sons. Clark showed his excitement by giving numerous hugs and lots of “I love you” and following us closely from room to room. I did manage one hug from Phil and could tell by his “Hello Sweetness”, delivered with a sweet smile, that he was also glad to have us home. As we walked upstairs and to our bedroom to start the process of unpacking and putting away I could see vacuum marks in the carpet. Our bed was made (which I would expect) but when we pulled back the rumpled duvet and top sheet we saw a fitted sheet that barely clung to the corners because under it was our blanket. So the line up went like this—mattress, blanket, fitted sheet, top sheet, duvet. We laughed as we scratched our heads. Here is what happened. After the bed had been stripped, sheets and pillowcases washed, Phil was put in charge of making our bed. He is diligent in making his own bed daily, changing his sheets every Monday and putting them back on when they have been cleaned BUT he has a twin bed and is not used to making a queen-size bed all by himself. We were clearly touched by his effort and praised him for his work (after we altered the layers and smoothed out the wrinkles when he was not looking). It was great to get away for a while but even greater to get home.
This is actually a picture of Clark's work at an earlier date. In the excitement of being home and remaking the bed that Phil made we failed to take a picture.

Wednesday, September 1, 2010

Annual Fragile X Picnic

I’ve been thinking a lot about the annual state fragile X picnic which was held on Saturday. With about 40 people who came I would consider it a success. One family (grandmother, daughter and her two sons, one of whom is affected) traveled three hours to associate with other fragile X families. I met families who have never come to anything but now feel a need to connect with others who understand what they are dealing with. Just as in the general population there is a wide range of disabilities (and abilities) with those who have fragile X. Yesterday we had verbal and nonverbal boys. Come to think of it there were only boys (and men) with fragile X at the picnic. I know families who have daughters with fragile X but they didn’t come. Many who came were anxious and showed their anxiety in different ways. One had his baseball hat pulled down low while he sat alone and silent in a chair, a nine-year old started crying as soon as he saw the resident big, black dog and cried for most of the two hours he and his family were there. Another hid behind his mother and ate at a distance from most of the attendees. Phil was his normal, noisy self, laughing a lot and thoroughly enjoying the picnic while eating more than his share. Clark was talkative and more than happy to go over the high points of the state softball tournament where their team took the silver.