Showing posts with label Prader Willi. Show all posts
Showing posts with label Prader Willi. Show all posts

Tuesday, June 8, 2010

The Bird Whistler

My son Bruce is so busy with his job and two boys that a visit from him with the boys is a rarity.

So, when he told me he would be able to come up on a week-day, I began to plan something for me to do with Grant. He is my 13 year old grandson. Bruce always plans his visits to come after lunch and before the evening meal. The reason for this timing is that Grant has Prader Willi and is restricted in how much he can eat. Bruce always brings special fruit flavored water and a treat for a mid afternoon snack. Mealtime is hard for Grant since he cannot eat all his tummy says he can eat.

I like to have something different planned to do with Grant. So, on the spur of the moment I decided to get out the Bingo game and arrange to have prizes for the winners. I had it all set up on the glass top table in the sun room. To make it easier to cover our numbers I had cut little squares of masking tape and stuck them on the table top. In a different place I had hidden the prizes , four of them in an envelope and numbered from one to four.

Bruce asked to take a shower as he had been awakened by Grant at 5:00 that morning. So, as he went up for his shower Grant and Reed, his 18 year old brother got the game going. Grant had an unusually good card and with a little encouragement from me and his brother he soon had a "Bingo". So, I got out prize # one. Four quarters. Grant loves money as he knows he can go shopping and he loves to do that. As the game progressed Grant had a second Bingo. This time the prize was money also, 3 quarters, 2 dimes and 1 nickel. In no time at all, Grant had his third win. This time the prize really got interesting. It was a $20.00 bill.

But that was when his luck ran out as Reed got the next "Bingo". This time the prizes took a down turn, or so I thought. But in all good grace Reed took his prize and went into the kitchen to put water into it. He was not impressed with it. However, his younger brother's curiosity had gotten to him and he wanted Reed's prize. I said , "Maybe you can buy it from him." This appealed to Grant and he told Reed he would give him $20 for his prize. SOLD. What teen ager can turn down $20 for something he did not want in the first place.

Grant went into the kitchen and put a little water into this unusual whistle shaped like a bird. Then he blew air into it and out came the most beautiful bird call I had ever heard. It trilled and rippled and hung in the air like a rustling of feathers. I jumped up and went into where he was and he was soon making all of these beautiful bird calls. Of course I was thrilled at this turn of events. We all went outside and listened to see if any of the birds in the woods around us would respond. And they did !! We were all enchanted. It seems the amount of water in the whistle and the way you blow determines the call you make. Even better the string around the whistle could be hung around the neck for ease of use.

Where did this whistle come from, you may ask. Well, several years ago I ordered it from a magazine with gifts for children. I had bought it with an eye to using it for a Christmas gift, but had discarded the idea and put the whistle away in a cubbyhole in my desk. I had forgotten all about it. It was still in the plastic bag it came in and attached to it was a card explaining all about this little whistle. I needed another prize and quickly decided this was it !

The item came from Jamtown. http://www.jamtown.com/ It was made in Vietnam by craftsmen and women who assemble the clay birds. They are made from a safe, lead-free ceramic. The birds are shaped and painted before firing to harden the material. It is actually a Christmas tree ornament but makes bird sounds so sweet it can be your companion all year long.

There is more. Quoting from the booklet that came with it : "The Bird Water Whistle captures much of Vietnam. Creatures of the air represent freedom, and the people of this country struggled for centuries against Chinese, French and U.S. armies. Water is vital to the rice fields that supply the staple food sitting on almost every plate every day. Bird calls in the early morning start at the same time as the hardworking, industrious Vietnamese people. To fly like a bird is a universal dream and another example of how people are more alike than different all over the planet earth."

So, in light of this extra information, do you think that Grant made a good bargain with his brother for this bird whistle?

Sunday, November 22, 2009

Birthday Event

Yesterday I left my two charges, Rocky and Cujo, and drove down to Snellville where my son, his two boys and their mother live. When I arrived at my son's home the birthday boy was asleep. He requires frequent naps to be at the top of his game. I had a little chat with my son and second grandson until Grant awakened. The moment his father heard him upstairs he sprinted from the room to get him in his shower and dressed for his own birthday party.

The party was scheduled at his mother's home a few blocks away and was a real surprise party. My second grandson, now 17 and driving, drove my car over to his Mom's. When we entered the house all was quiet. We walked back to the living room area and when Grant got to the quiet room, everyone shouted out "surprise" !!!! He was really not expecting this, which was the idea !!

Gathered there were his last four baby sitters, or play friends or nanny, which ever label fits. Also some special neighbors who have known him for so long. After greetings all around his mother began to set out the birthday cake and extra cheese cakes, etc. Usually there is one cake but she had choices. It all looked so tempting but I settled on white cake with raspberry filling.

In the adjoining room, called the music room as Reed the oldest, plays his cello there and the piano is there also, was a shiny new bicycle with a huge bow on the handlebars. Grant did not notice it in his eagerness to show the pet parrot to his friends. The parrot was in his cage and stayed there during the party. This was a mixed group with two toddlers, one four year old, one five year old and one not yet born. It all worked so well as Grant is Mr. Personality and blends in nicely with any age. Among his gifts were a gift card, money in a pine cone disguised as a turkey, a "doctor" shirt (as he likes to pretend he is a doctor with his stethoscope and accompanying medicine bag). Also a bicycle guard cap with red streaks on it. This from his brother. Games, book, and some gifts from the lunch room lady which they left at his home.

Grant is mesmerized with Hannah Montana. He likes to play pretend games with her as the focus. He likes her music and the idea of having her as a best friend. This is a well known fact and the school lady had given him a soft purple boot pillow with Hanna's logo on it. It is all a game and I think he knows it but he is so full of life it seems right.

Grant has a phenomenal memory and will long remember this day which so many people lovingly shared with him. This his 13th birthday has been a long journey which is still in progress. It has been a struggle for his parents and his brother who will be leaving home next year to attend college.

At the party I talked to the mother of one of his sitters. She was a teacher whom I met when we were both teachers at the same school. I was telling her a story of when Grant was still crawling and not yet vocalizing. He was on the carpet in front of a sofa. Reed and I were sitting on the sofa and having a popcorn snack. The television was on a kiddie program. Grant was watching us and I was watching him. He suddenly said to me " I want up there". I was so surprised to hear him speak as I had not heard him vocalise at all. So, I picked him up and sat him with us and fed him small easy pieces of popcorn. It has been a long history of speech lessons and appointments with specialists to help him grow and develop. It has taken much patience and love from his parents to help him reach this point in life. So entering his teen years was indeed an occasion for celebration. The journey is not over, the special sessions will continue, the support and love will continue, and Grant's engaging personality will bind us to him in many ways.

This is a story of coping when life takes a turn not expected. When a child is born with a genetic anomaly which is new to you. A lot must be learned and strength which seems out of reach is deep inside ready to be tapped. A child who spends his childhood trying to catch up, who knows only one way of living. Hopefully all such children with Prader Willi Syndrome will find a family who can be supportive and loving and kind to help in his/her journey.