New Year's Eve

Some of my caregivers are away on vacation making it even more difficult to cover all the shifts. Recently I notice a couple of new faces and I am trying to get used to being helped by them. This afternoon another person comes over for an interview.

There is not enough staff for New Year's day. It is to my delight that I am going to sleep over at mom's home tonight and be with her most of tomorrow. My mom is trying to figure out how to keep me occupied all day long. Stores are not open, so we can't go shopping. It is too cold to fly my kite. . . . . I will wait and see what kind of creative idea my mom comes up with.

My mom has been practicing her piano. She has two weeks off from her lessons. This gives her extra time to practice. She plays her old songs including O Canada. She has not played it for some time as there are so many new songs for her to learn. After hearing O Canada a few times, I start to play it too.

Tonight my mom practices her scales. I love it! I giggle as her fingers move back and forth. She intentionally moves faster and I giggle some more.

Candy Cane Lane

The weather has been mild lately (around freezing). The roads are slushy and our van is really dirty. The windshield has been splashed with mud. The visibility is limited and our windshield wipers are not doing their job well.

My mom decided to take me to Candy Cane Lane tonight. She went out to wash the windshield so that I could have a better view. That wasn't an easy job for her as she is short and our van is high. She climbed up onto the front fender which is coated with a thin layer of ice. Being slippery, she used her left hand to hang on while she stretched and wiped the windshield with her right arm. That was the tricky part because she has right shoulder pain (from old age, you know). She did it and got the windshield and all the windows really clean after washing it the second time. Now we have a dirty van with clean windows.

My mom drove up and down Candy Cane Lane three times for me to take a good look at the lights. It is not cold tonight - our van registered +4 degrees. A lot of people parked and walked. This would not have worked for me because there were dogs everywhere. Had I been on the side walks, I would have dashed faster than the cars. However, there are so many of them, I wouldn't even know which direction to dash.

Proactive

Due to shortage of staff, I get to spend more time with my mom. I slept over at my mom's home last night and I stayed with her till supper time today. After she tucked me in, she worked on calculating the staff's retention bonus offered by PDD (the government funder). When she was done at around 2 am. she could hear that I was up. She came downstairs and coached me back to sleep. She didn't get back upstairs to her bedroom till 5 am.

After my mom reflected on the course of events, she realized that she could have completely changed the situation if she had been proactive. My sister gave a CD to my mom before she left for Australia. My mom should have put the CD away. The songs are new to me and I have a tendency to fixate on novelties. The music was on when I went to bed and I was happy. My mom removed the CD for fear that I might damage it. I got up in the middle of the night looking for the CD. That was the reason I refused to go back to sleep. Being tired, my mom didn't think of putting the music back on for me.

Today, she took me to a Christmas party at the Alberta Association of Community Living which is an organization that promotes community inclusion. At the end of the party, I got to choose a gift. Guess what I chose?

Anybody who knows me will not be surprised that I chose a washing machine. One of my favorite entertainments at home is to sit in front of our washer to watch the clothes tumble. This washing machine comes with laundry soap, laundry basket and some clothes. It has a soap dispenser I can pull out and there are different buttons I can push. I can also manually turn the drum to see the clothes tumble inside. It can actually be battery operated and it has sounds and lights. I will need my mom's help with using batteries.

Getting to Know Me

It is not easy to get to know me for various reasons:

* You may be hesitant to approach me because I am different.

* When you do approach me, I may not respond. Generally, I am so distracted by what is happening around me that I have trouble focusing on what is being said to me.

* I have a limited vocabulary and I am not very motivated to use my words.

* I need a lot of time to process an incoming message. My mom always tries to get me to pay attention and to respond. Most people are very polite and kind. They tell my mom it is fine and that she does not have to insist that I respond. It is important for me to learn how to interact with others, so please help my mom in encouraging me to speak.

With the use of my blog and facebook, I am hoping that you will be able to get to know me more. With your help, I may one day learn to be more responsive when others communicate with me.

Facebook

Since most 25-year-olds have a Facebook Account, I should have one too. Thanks to the help of a friend, this becomes a reality. I find it exciting that I can invite people to be my friends. I have lots of cousins, so it should not be too difficult to build a circle of friends.

I do not talk much, so it is not easy for others to get to know me. I am hoping that through the use of technology, such as facebook and blog, I can let others know who I am. I am generally an easy-going, happy kind of guy. I am also curious and sometimes my curiosity gets me into trouble. My mom often jokingly states that she should have named me George. You'd understand why if you have read the books of "Curious George". George gets into trouble all the time, and so do I. My mom has to be on the alert all the time and this is good "exercise" for her brain and it will help in delaying the onset of Alzheimer's Disease.

Christmas Songs

My mom's piano teacher decided that mom should learn Christmas songs this month. As a result, I get to hear the following songs over and over again:

* Jolly Old Saint Nicholas
* Good King Wenceslas
* Jingle Bells
* Away in a Manger
* Go, Tell it on the Mountain
* We Wish You a Merry Christmas
* Silent Night
* Amazing Grace - This song got added to the list because I have been singing it.

Christmas is the most exciting time of the year for me because of my love for Christmas music, trees and lights. As a matter of fact, I like Christmas songs so much that I used to have a tape in our van and I played it almost all year round. I can still remember that when I was listening to Christmas songs on one hot summer day in our van, a person passing by us stared at me.

Windmill

My mom read a story called Welcome to Holland. The author (Emily Perl Kingsley) described having a baby as planning a fabulous vacation trip to Italy. Having a child with disabilities is like landing in Holland instead of in Italy. So, my mom and I landed in Holland. Now I am beginning to understand why I am so attracted to windmills.

A decade after the author landed in Holland she wrote another story called Celebrating Holland. I agree with her a 100% on the following statement:

. . . . . it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.

I certainly enjoy the windmills.

To read the stories, you can click on the titles (in green).

Temper Tantrum

So far I have only described the positive aspects of our trip. Now it is time to confess - I threw a temper tantrum one night . . . . .

We were out all day and I didn't get a chance to take a nap. When we returned to the ship, my mom asked me what I wanted to do. I said "eat." After supper, my response to her question was "show". My mom took me to the theater early so that she could find a front row seat for me on the balcony. I would sit and wait patiently (as seen in the photo) for the show to start.

That night we watched a magic show. There was some music, but no singing or dancing. After the show, I wanted more and refused to return to the cabin. Being stronger than my mom, she couldn't make me go inside. I ran in all different directions away from our cabin. Eventually, my mom got me inside the cabin. Then I took the opportunity of my mom's use of the bathroom to open the cabin door and dashed out. Grandma followed me immediately. It was a good thing I decided to plop to the floor half way down the corridor. This way my mom was able to see where I was when she came out to catch me.

After my mom tucked me in, I acted silly and giggled continuously for some time before I finally fell asleep. Agitation and silly giggles are my signs and symptoms of being tired. After a good night sleep, I was back to my happy self.

Hilo, Hawaii

Hilo, located on the east coast, is the capital of Hawaii Island. My mom rented a car so that we could visit the Hawaii Volcanoes National Park. We drove along the Crater Rim Drive - an 11 mile circle around the Kilauea Caldera. We stopped at the various attractions along the road. It was neat walking through the Thurston Lava Tube - a 15-minute loop (the lighted section). We didn't venture into the unlighted area. You will need a flash light if you are interested in exploring the lava tube further.

We also visited the Rainbow Fall and went a little upstream to see the Boiling Pots. Before we returned to the ship, we stopped by a beautiful Japanese garden called LiLiuokalani Gardens.

Lahaina, Maui

Located on the northwest coast of Maui, Lahaina used to be the whaling capital of the mid-Pacific. The warm waters are haven for humpback whales. They come from Alaska to mate and bear their young off the coasts of Maui.

We took a free shuttle to the Whalers Village, Ka'anapali. The driver suggested visiting the Whalers Village Museum and taking a stroll along the beach walk which links the beaches and resort areas. My mom directed Grandma and Auntie to the museum, but she couldn't go because museums are of no interest to me. We never got to the broadwalk because I was attracted by Christmas music coming from a store called Maui Toy Works. I stayed in the store for over half an hour listening to the music. My mom tried to persuade me to leave the store. She succeeded a few times in getting me to step out of the store. But, I ran back in again and again.

The people at this store were wonderful. My mom appreciated their kindness and that they didn't make us feel unwelcome. I have been to stores where staff were impatient and sometimes even hostile. My mom has taught me well in keeping my hands down and not to touch anything in stores, so I am not a trouble maker. It upsets my mom when I am not treated with respect.

Na Pali Coast

The towering cliffs of the Na Pali Coast is a must to see. This area is located along the northwest coast of Kauai, which cannot be reached by land. The cruise ship went around the island in the afternoon making it possible to view the lush, spectacular scenery. My mom isn't very good at taking pictures. The coast is a lot prettier than what is shown in the photo. You can see it better by clicking on the photo.

Nawiliwili, Kauai

We had a day and a half in the Island of Kauai, known as the "Garden Isle". We rented a car and went sightseeing along the east and north coasts. We had lunch by the Kilauea light house as shown in the photo. Then we drove to the west of the island to visit the Waimea Canyon which is referred to as the "Grand Canyon of the Pacific".

Driving around in Hawaii presents a unique challenge to my mom. The names are difficult to pronounce, difficult to spell and extremely difficult to remember. My mom does not have a navigator to read the map for her, and she had trouble remembering her planned routes. We ended up going many extra miles to get to where we wanted to go.

After my mom drove quite a distance looking for the Waimea Canyon, she turned around thinking she might be heading the wrong direction. Then she found out that she was actually right in the first place. She had to turn around again. I loved it and said, "weeeee" a few times as the car zigzagged up and down the hills.

Our plan was to take free shuttles the next morning. We were thrilled when we saw a free trolley car similar to the one we took in Kona. We hopped on anticipating another enjoyable ride. This free shuttle reached its destination in about a minute and a half (instead of an hour and a half). What a disappointment! We returned to the pier and took the free shuttle to Walmart. This was a longer ride and I was happy with it.

You can check out the following sites if you are planning for a visit of the Island of Kauai:

Kauai Visitors Bureau
Discover Kauai

Kona, Hawaii

Kona is on the west coast of Hawaii Island (nicknamed as the Big Island). It is famous for its gourmet coffee that is noted for its strong, rich character. Our stay at Kona was from 8 am. to 6 pm. Being a short day, my mom did not rent a car. We went ashore and hopped on a free shuttle to a store located a short distance from the pier. We had visited the same store in Kahului, so we lost interest quickly and returned to the pier.

We saw a trolley car labelled free shuttle. My mom checked it out to make sure it was free and that it would bring us back to the pier. We hopped on and then realized that the ride was going to be an hour and a half long. That suited us fine as we had to kill some time anyway.

This shuttle (Keauhou Shopping Trolley) runs all day long from 7:30 am. till 8 pm. You can hop on and off at the various stops. My mom didn't dare to be too adventurous since she has me with her. So, we did not get off the shuttle until we returned to the pier.

The following is the route and schedule of our ride:
11:45 am. Kailua Pier
11:55 am. Alii Gardens - This is a shopping mall.
12:00 pm. Magic Sands Beach
12:10 pm. Outrigger Keauhou Beach Resort
12:15 pm. Keauhou Shopping Centre
12:20 pm. Kona Country Club
12:25 pm. Keauhou Bay
12:30 pm. Sheraton Keauhou Bay Resort
12:35 pm. Kona Country Club
12:40 pm. Keauhou Shopping Centre
12:45 pm. Outrigger Keauhou Beach Resort
12:50 pm. Keauhou Shopping Centre
13:00 pm. Magic Sands Beach
13.05 pm. Alii Gardens
13:15 pm. Kailua Pier

The trolley car stops at the Kailua Pier at the following times: 7:30 am., 8:45 am., 10:15 am., 11:45 am., 13:15 pm., 14:45 pm., 16:15 pm., 17:45 pm., and 19:15 pm.

Kahului, Maui

We had 2 days in Kahului. Mom rented a car for one day and we visited Iao Valley State Park in the morning. The pointy mountain is called the Iao Needle (Elevation 2250 feet). Being in the valley, we were sheltered from the sun and the temperature was so comfortable there. It would have been nice to take a walk through the shaded trails. Not knowing how long the trail was and how far Grandma and I could walk, Mom decided not to walk too far in. She ran ahead and explored a short distance away from us and returned.

In the afternoon, mom drove along the Road to Hana - a narrow road with multiple one-lane bridges. I love the ride as we were continuously making turns and going up and down the hills. It would have been like going on a roller coaster ride if Mom drove faster. She was being good and tried to stay at the speed limit as much as she could.

The next day we took free shuttles to go shopping. We didn't really buy much. We just wanted to get out and move around a bit. I generally do not nap in the afternoon. However, while on a cruise, I needed a nap in the afternoon.

Honolulu, Oahu

We (Mom, Grandma, Auntie and myself) arrived Honolulu in the evening and we went directly to the pier to board the ship. It was a long day for us, so we went to bed right after supper.

We had the next day in Honolulu before the ship left for Maui at 6 pm. We toured the historic district on foot in the morning. On our way back to the pier, we noticed that the Aloha Tower Marketplace was within walking distance. Grandma and Auntie went shopping while Mom followed me around. There were lots of fans everywhere. I had fun going from one fan to another.

Whenever I was asked what I would like to do, my answer was one of the following: "eat", "show", "shopping".

Coming Home from Hawaii

I was waken up at 7 am. December 1 to get ready for disembarkation. My mom told me that we were going on an airplane to fly and to go home. I know the words "airplane", "fly" and "go home", so I could make sense of what she was telling me. I was excited about going on an airplane, so I did not feel sad leaving the ship.

I stayed awake the whole time during the trip home. My mom managed to get me to doze off for a few minutes two times. I did not sleep until I was tucked in at about 7 pm. December 2.

Please stay tuned as I will be writing about my cruise experience in further details.

Departure for Hawaii

On the day before we left for Hawaii, I watched my mom packed our suitcases. I began to realize what was going to happen when she told me about the ship, show and airplane.

As soon as I woke up in the morning of departure (November 21), I turned to my mom and said, "show". As we were getting ready to leave for the airport, I said to her, "shop". She didn't understand me. I said "shop" three times before she realized that I was saying, "ship". I still don't know how to pronounce "ship" correctly. I know how to say "shopping" for a long time, so "shop" is the closest I can get for now.

Hawaii

My mom will be taking me to Hawaii in a few days. I don't have a clue about what is going to happen as my mom is not able to make me understand her. She has been telling me about ship, shows and airplane. I know these words, but I don't know what she is trying to explain to me.

Apparently, my mom paid $545 per person for a 10-day cruise - a very good deal! The airfare she paid was $630 per person. A couple of weeks after she made all the bookings, Air Canada had a better seat sale of $503. Well, my mom knows she can't win everything and she is happy with what we've got.

Dance

My mom's friend invited us to a dinner and dance last Saturday. It was sponsored by a group called Il Sorriso Degli Innocenti (The Smile of the Innocents) - a non-profit organization which raises funds to support individuals with disabilities. These wonderful people make the world a better place for us because of their love.

We had a great time! I focused my attention on the music for the entire evening. I got out to dance periodically, but I was not as enthusiastic in my dancing as usual. My mom was unclear if I was being shy, or if I was too distracted by being in a new surrounding.

Since we came home, I have been putting music on and dance. I said to my mom, "Twist." and invited her to join me.

All Done

My mom had very little sleep last night. She planned to give me my flu shot after I fell asleep. She waited till I was snoring before approaching me. However, as soon as she touched me I woke up. I had a feeling that she was up to no good, so I was on guard for every little move she made. She waited and tried. She waited again and tried. This went on for hours.

I have limited speech and I generally do not use my words unless I was prompted to do so. But, I was motivated last night and I said to my mom, "All done!" This was my way of telling her to stop whatever she was trying to do to me.

Finally, at 4:30 am. my mom gave up. She waited no more and proceeded to give me my shot while I struggled. She was really fast and in a flash the needle was in. It didn't hurt that much, so I stopped fighting with her. I calmed down when she told me, "All done!" She covered me up and kissed me good-night.

My mom had to go to work in the morning, so she was only able to sleep for a couple of hours.

Flu Shot

My mom is getting old and mixed up. She got her dates wrong, but she is glad that the flu shot is not scheduled for today because I am not well enough for it yet. It is a week from today that we will be getting our shots. I should be okay by then.

Despite not so good weather forecasts, our days have been bright and sunny. It is not as warm as last week, but the sun helps in keeping our spirits up. I love sunny Alberta. A friend of ours will be coming to visit and stay with us over the November long weekend. I wish he is here now when the weather is still decent.

Flu

I have not been feeling well over the past two days - running nose, cough and a "sexy" voice. Our whole family will be getting our flu shots on Tuesday (4 days later). My mom wishes that I will be well enough by then. I don't know what I want to wish for. I want to feel better, but I don't want the shot.

My mom has been ultra busy over the past few weeks due to the Chinese Outreach Thanksgiving dinner. She has skipped 3 piano lessons, as she was not able to practice as much as she should. She has resumed her daily practice this week so that she will be ready for her next lesson.

My mom was pleased when she heard that I have started to play the organ again at my home. I have not done so for at least a couple of years. My mom took piano lessons for the purpose of regenerating my interest. It turns out that her lessons are not entirely for me. I can tell she enjoys the music she plays.

Circle of Friends

My mom has attended several workshops recently to learn about such concepts as inclusion, community living, valued roles, relationships and supportive circle. It opened her eyes to the endless possibilities for me. Tonight, she was at a workshop on the Deohaeko Support Network. At present, my mom cannot visualize this to be a feasible option for me. She maintains an open mind and will not hesitate in trying new ideas.

I have lived a good life, but there is something missing. My relationships are limited to my immediate family and paid caregivers. I am in contact with a large number of people - extended family and church. However, for the most part, all I have is purely my physical presence with very little interaction with others. I have not built connections or relationships outside of my close contacts.

I am sure you have friends and they are important to you. My mom has not thought about the possibility of me making friends. After hearing different stories about how the lives of people with disability can be enriched by having a circle of friends, my mom would like to help me in creating meaningful relationships. It is not going to be easy and it will be time-consuming.

Sooner or later, my mom will no longer be able to look after me. It will be good to have a supportive network to look out for me. It does not mean they have to step in to care for me the same way my mom does. Having a group of people in my life who knows me well can make a difference. I will not be totally dependent on one person. Sometimes, my mom feels all alone and unsupported. I know she does not want my sister to be in the same situation when she is no longer around. I also know it has been overwhelming for my sister when she thinks of the future.

Thanksgiving Dinner

I did not have anything to write about lately as I am not spending that much time with my mom. She has been very busy selling tickets for the Chinese Outreach Thanksgiving dinner and organizing the event.

My mom has never taken me to any of the Chinese Outreach events in the past, but she will take me to the dinner this Saturday because I participated in the Walk for Jesus fundraising. I am now becoming a "pro" in walks. My first experience was the Stroll for Liver event in June and I raised over $6,700 for Canadian Liver Foundation. Even though I raised less money this time ($4,740), I feel strongly that it is more meaningful to walk for Jesus. I don't mind doing it again next year for Chinese Outreach. We can make the Walk for Jesus an annual event.

Fantastic Day

Today the weather was fantastic and so was my day. I got to spend the whole day with my mom because my home was short of staff again.

As soon as I woke up in the morning, I said to my mom, "Shopping!" She told me we had to go to church first and then shopping. We went to a music store with lots of keyboards. I showed no interest in any of them, including the keyboard with light up keys. My mom was hoping that I could learn how to play piano with the light up keys. In the past, whenever I saw a keyboard in the store, I would play it, but not today. As a result, my mom hesitated in buying one. My sister made a comment that I was more interested in the Wii than the keyboard. She was so right!

After we went home, everyone tried to teach me how to play some of the Wii games. Even though I had not learned how to play the games, I had fun turning and moving the remote control to create different effects that I could see on the TV screen. I laughed and I said, "Wii!" as I played.

Wii

This afternoon I watched my sister and grandma played the Wii games. I could tell they were having fun from their cheering and laughing.

In the evening, my mom brought me home to play piano. I said "O Canada" very clearly and played it with some assistance from my mom. Then I played some random tunes with both hands for a while. I got up and saw the Wii remote controls. I called out to my mom for help. (I know how to say mommy in a certain way that tells my mom I need help.) My mom looked and said, "I don't even know how to turn the Wii on." She went to the piano and started to play the B flat scales.

A little later, I called out to mommy again. She turned around and was surprised that I had the Wii game on and with a remote in my hand, I was trying to play the game. She came and joined me. We managed to start one game by accident. That was it. The rest of the time was simply experimenting with the buttons. My mom was trying to read the instructions, but never succeeded to do so because I pressed a button and the instructions were gone. She tried to bring the instructions back but didn't know how. Anyway, I don't see a need for instructions as I never use them.

Birthday

Today is my birthday and I am now a quarter of a century old. My mom is going to bake a chocolate zucchini cake for me. I'd better watch out as I gained four pounds last month and another four pounds this month. I have overheard my mom reminding my caregivers to give me small servings at meals and to plan outings that promote physical activities. She took me on bike rides whenever possible. Unfortunately (or fortunately for me), we are not going to have too many nice days for biking. I have not been getting my incentive (ice cream) for some time.

Monopoly

When my mom practiced piano, I went over and chased her off the piano so that I could play. That was exactly what I did to my sister years ago. I monopolized the piano and would not allow my sister to practice her lessons. The only time she could practice was after I fell asleep in the evening. Just imagine how hard it was for her. No wonder she was reluctant to practice. I was her barrier in developing an interest in piano playing. It is a shame that she does not play the piano any more. I know I am guilty.

My sister watched me play "O Canada" and was impressed by it. My mom started off guiding my fingers to the right keys and I continued on my own. I can play various parts of the song right. Not 100% right, but one can recognize the melody. My mom has not taught me the whole song yet as she has trouble doing so. She plays the song with two hands and she teaches me how to play with one hand. She manages to figure out the one-hand play for about half of the song only. I am moving faster than her capacity to teach me. As I have told you before, my mom does not have music talent. I notice that after teaching me, she is struggling a bit playing with two hands. You see, she could memorize the song for some time already. Now, she is messed up because of teaching me. As I progress, my mom regresses.

Getting Colder

Today, my mom went over to our neighbor's garden and picked at least 10 pounds of tomatoes. No, no, no, she was not stealing. A week ago, our neighbor was going to pick all the tomatoes and my mom convinced him to leave the smaller ones on the plants. He didn't think the tomatoes would grow any more. He had such a good harvest that he gave us a big bucket full of tomatoes. He told my mom we could have whatever were left on the plants. With a week's nice sunny weather, the tomatoes did get bigger and some were starting to turn yellow and pink. As the tomatoes ripened, my mom brought the nice big ones over to the Beraka Residence for us to enjoy. She cooked the not so nice ones at home.

My mom got me out on my bike whenever she could. When we biked merrily down the street, I could hear this loud rustling sound. I frowned and listened and couldn't figure out what it was. Then I noticed my mom steering the bike towards the curb where there were piles and piles of yellow dried leaves.

Progress

Even though my mom has been really busy and stressed this week, she continues to practice her piano. She encourages me to play the piano and I can now play "O Canada, our home and native land" with some assistance from her. I have listened to my mom play this song so many times that I have the melody in my head. When I played some random notes, my mom could identify that I was playing bits and pieces of O Canada. I also had fun playing my favorite CDE EDC CCC. I laugh every time I play and say CCC.

I played on and off for about half an hour before I was willing to get off so that my mom could brush my teeth. This was the first time I played for so long. My mom was not sure if I really wanted to play the piano or I was trying to avoid the teeth-brushing. When my mom tried to take me back next door to the Beraka Residence, I rushed over to the piano. I played for a short time and stopped. When my mom tried to persuade me to go home, I played a little more. This time it was obvious that I was using the piano as a delay tactic.

Quality of Life

My mom was reading a PDD (Persons with Developmental Disability) brochure on Quality of Life. She was particularly interested in the following statement:

"The biggest problem is transportation, because it affects so much of what you do."

I totally agree with this statement. PDD provides funding to pay my caregivers and a small amount of funds for other costs, such as transportation. Our caregiver is only allowed to claim 15 km. per day to take me and my 2 roommates on community outings.

I understand that we are using public funds and we need to be accountable. What I cannot understand is that not everybody needs to be held accountable. The rules apply to Family Managed Supports, but not to agencies. I know of an individual who is also supported by PDD and she resides in a home managed by an agency. This person recently went out of the province for a vacation and her caregiver can claim mileage. I am not saying my caregiver should also take me out of town and claim mileage. I only want to illustrate the double standard.

Show

The new staff my mom hired earlier this month did not show up for work. When my mom was talking about no show, I caught the word "show". I know that word! I turned to her and said, "show?" with my eyes wide open visualizing dancing, singing and music.

I love any kind of show, including "no show". When the staff did not show up, I got to spend more time with my mom. She took me out for a walk and she started teaching me how to play "O Canada".

Walk for Jesus

My mom woke me up early in the morning and told me about going to the mall. I got up as I was excited about going shopping. I didn't know I was only going there to walk. My mom wanted me to be there before the stores open so that I would not be distracted. To her surprise, Sears and Bay opened early. I kept wanting to go in, but my mom hung onto me really tight and told me, "Later."

We arrived at Southgate Shopping Mall at 8 am. and we were there till past 11 am. The other Bara team members arrived at different times and I walked with all of them round and round inside the mall. I cannot tell you how many rounds we made. I don't know how to count and my mom lost track of how many times we walked around the mall.

I behave amazingly well for my mom today. After the stores opened, I really wanted to go into some of the stores we passed by. My mom pulled me away from those stores and prompted me to continue walking. Somehow, I didn't resist. I am stronger than my mom. There is no way she can pull me away if I don't let her.

I have raised a total of $4,200.00 for Chinese Outreach.

River Valley Trail

It was warm and sunny today. We are not going to have too many balmy days like this. It would have been a waste not to go out.

My mom took me down to the river valley trail this morning. I don't like going there because of dogs. She brought my red airplane kite along, so I reluctantly went with her. Whenever we came to an open area, my mom tried to get the kite up. The wind came in spurts, so the kite was up and down like a yo-yo.

Sometimes, my mom ran with the kite to keep it up in the air. I ran after her and tried to catch her. We had fun and we had our exercise too.

Bara Fundraising Team

The Walk for Jesus day is fast approaching. It is going to be next Saturday (September 22) at the Southgate Mall. I have raised a total of $3,550.00 for Chinese Outreach.

My mom's plan is to take me there at 8 am. to start the walk before the stores open. She knows I am easily distracted and I will never complete the walk if I happen to see a fan or a stereo system.

The Bara Fundraising team has 4 members. One of the team members will come and join me for the walk at 8 am. The other two want to sleep in and will start their walk at 10 am. Being the organizer of the event, my mom and I will stay in the mall to wait for them to come. I will be joining them to go for my second round of walk for as long as I am willing to go along. I know my mom will be trying her best to block my view to any item that may be of interest to me. "Good luck, mom!"

My Hidden Artistic Talent

Each Sunday, I sit with my mom during the Cantonese service. Then I stay in the sanctuary to wait for my sister to arrive. I sit with her during the English service. I behave differently each Sunday. Some days I feel like standing, while other days I don't. If the sermon is too long, I get hungry and cranky. My sister does not like it when I get agitated. She likes it when I am an angel. Get the pun? I am in church and I am an angel!

At church I am always good for my mom, but sometimes I bully my sister. This past Sunday, I was in my best behavior for my sister. I saw her holding the bulletin and a pen. I took them from her and I tried to convince her to help me draw. She drew a family of stick people on the bulletin. I continued to bug her to draw some more. After she helped me with writing "TIM" a few times, she decided to ignore me. I proceeded to entertain myself by drawing hands for the stick people. At the end of the service, I handed the bulletin back to my sister. She must be impressed by my work because she showed it to my mom and suggested posting it on my blog.

My Red Airplane Kite

I have some Kite Festival pictures to show you. You can click on the picture to enlarge it.

My mom and I tried hard to get my red airplane kite air borne. It did stay up temporarily each time we got it up in the air.

Loss of freedom

My mom's freedom is short-lived. She went to IGA and picked up some Dollar Day specials. Then she went to Superstore to fill up her gas tank before going inside to do more grocery shopping. She never got to go inside because the van broke down again and it had to be towed back to the garage.

My mom is not upset at the mechanic because he is a trusted friend. He always helps us out. Yesterday, he tried his best to get our van fixed so that we could have it back for the weekend. Unfortunately, it hasn't worked out.

While waiting for the tow truck, the sky turned dark and it started to pour. Then it hailed. My mom was wishing that the tow truck would not arrive so soon. She got her wish because it stopped raining by the time the tow truck arrived.

Freedom

My mom got her freedom back because our van is now fixed. This past week, she managed reasonably well using the public transportation to get around. We are on a good bus route, but she cannot afford the increased traveling time. You should see how happy she was when she went to pick up the van.

My mom shops for produce twice a week so that we will have fresh fruits and vegetables. She couldn't go grocery shopping by bus. So, our fridge has been unusually empty for a week. You are going to see her in grocery stores this weekend. She visits different stores to pick up their weekly specials in order to cut down on our grocery cost. My roommates and I are on AISH (Assured Income for the Severely Handicapped). My mom wants to help us in stretching our dollars as much as possible. For the amount we pay, we get exceptionally high quality foods. We are fed really well - so well that I gained 4 lbs. when I weighed in this month. I'd better work harder on my "step, step, step" routines.

Kite

Yesterday was nice and sunny in the afternoon. My mom planned to take me out for a bike ride after supper. She was disappointed when it suddenly started to rain. Today, she decided to beat the rain and she succeeded. She took me out before supper and we came home just as the sky was turning dark. It was raining by supper time.

When we went out, it was still sunny. It was quite windy and my mom said to me, "We should go fly your kite." I surprised my mom by starting to search the sky for kites. She didn't know I have learned a new word at the kite festival.

Tow Truck

We were returning home from the airport. Shortly after we got back to Edmonton, we heard a fairly loud sound. Mom thought she hit something on the road, and yet she was certain there wasn't anything on the road. When we made a left turn heading towards the Whitemud Drive, my mom noticed that the steering wheel was really tight. She knew something was wrong. Instead of proceeding to the freeway, she changed lanes and pulled over when it was safe to do so. There was no way we could drive home, so mom called AMA to tow the van to the garage. Thank God the van did not break down when we were on our way to the airport otherwise our friend would have missed the plane.

We were fortunate that we were already in the city making it easier to call for help. We made a couple of phone calls and managed to get hold of a friend to come and give us a ride home.

Kite Festival

My sister took me to the Kite Festival yesterday. There were so many colorful kites flying in the sky that I was able to notice them as we were approaching the park. We brought two colorful packages along. At that moment, I suddenly knew what they were. Once we arrived the park, I was more attracted by the music than what we were there for - go fly a kite. Apparently, that is not a very nice thing to say to someone.

My sister assembled the first kite - a red airplane. We tried to get it air borne, but the wind was not strong enough. Even though my mom persevered, it only stayed up for brief periods each time. Despite being somewhat disappointed, she had fun. I took the line a few times when the kite was up. I lost interest when the kite came tumbling down.

My sister assembled the second kite - another plane. This one is more colorful and has a long tri-color tail. My mom ran with it to get it up in the air for as long as she ran. When she stopped, it came down. By that time, most of the other kites were down too. Only a few managed to continue flying. We decided to call it a day.

Walk for Jesus update - I have raised $3,500.00. The event is coming up soon - September 22.

Bumble Bee for Hire

My mom is a hardworking bumble bee. She goes out to the garden every morning to pollenate the zucchini. She transfers the pollen from the male flower to the female flower so that the zucchini will grow. If not pollenated, the zucchini turns yellow and withers.

In order to come up with resources to top up my support workers' salary, she has this creative idea. She plans to put up a sign on our front lawn - Bumble Bee for Hire. Before she does that, she has to decide whether she is going to charge by the flower or by the hour.

Sleep Over

Every Saturday night, I sleep over at my mom's home. This makes it easier to get me ready for church Sunday morning. Sometimes I refuse to co-operate and we end up arriving church late.

My mom usually gets up early. She must be tired this morning because she didn't even hear me. I was up for some time and got into a few mishaps before she woke up. Don't panic as there was nothing major. Furthermore, I tried my best to problem solve. For example, I knocked over the vase and spilled some water. I went to the bathroom to grab a towel to wipe the table. I didn't do a good job, of course. Anyway, I tried and it is the effort that counts.

Update on Walk for Jesus fundraising - I have raised $3,450.00.

2-tiered System

Over the past two years it has been very difficult to hire staff to look after me and my roommates because the salary rate of the support workers are not funded adequately to match the current market rate. We have very few job applicants. My mom practically hires whoever applies, except one . . . . . My mom asked this applicant what she would do if any one of us hit her. We are not violent, but one of my roommates and I sometimes strike out when we get upset or frustrated. Her response was to tie us up and give us medications. The last few staff mom hired did not work out. One came to work with alcohol on her breath. She was really high and she was singing and dancing. I was the only one who enjoyed her presence due to my love for music.

I hear that some families are topping up the staff’s salary out of their own pockets. This means individuals whose families are well off can have staff and possibly better staff to look after them. Individuals from poor families become more disadvantaged. I am one of the lucky ones that my mom is willing to give up her job to manage our home with no pay (even when she works as a staff). She manages the home well so that my roommates and I get quality care. Thank God she has the resources to do this. Other families that wish to do the same may not be able to. However, I don’t think it is a good thing to have a 2-tiered system. It makes families lacking financial resources feel guilty about not being able to top up staff salary or do what my mom is doing. My mom is in a dilemma now - Her current earned income is $80 a week. Should she go back to work so that she has the money to top up my caregivers' wage? She will have to give up managing the Beraka Residence. The trouble is if the care I received previously under the management of an agency was safe and adequate, she would not have chosen to manage this home.

I am getting good care in the expense of my mom. She is often stressed out as a result of the demands and workload. She loves teaching and decided to pursue her master in nursing to better prepare herself in her role as an instructor. Through many years of hard work and juggling between studies, family responsibilities, serving God and earning an income she finally graduated in November 2004. Then she gave up teaching in 2006 because she was not able to cope with the workload of managing the administration of the Beraka Residence. She misses her friends at the Faculty of Nursing.

O Canada

Tonight, my mom came over and said to me, “I am going to play piano. Do you want to come?” I immediately headed off towards the door.

“Come back! Don’t forget to tell someone.” Mom said.

I turned around and told the staff, “I want O Canada.” I think I am finally grasping the idea of how to form a meaningful sentence.

Right after I got into my mom’s home, I sat down in front of the piano. I played CDE EDC CDEDC CCC. My mom guided my fingers to the right keys and I played it perfect once without any help from her. Then she guided my fingers to play the first few notes of O Canada. After that I wanted to play my own music. I played some random notes and then my mom noticed that I was playing Doe, a deer, a female deer (I played this correctly). Ray, a drop of golden sun (The tune was recognizable). Then the rest was kind of hit and miss.

Tomato

It has rained for several days and I missed my ice cream. When my mom offered to take me out on a bike ride, I readily agreed. My mom is training me to tell someone before I go anywhere. I went to the staff and said, "I want go bike . . . (I don't know how to say ride yet)" I am quite proud I managed to say that because I have only been taught to say, "I want go see Poh Poh (Grandma) please."

We went outside and I looked at my treat. What a disappointment! It wasn't ice cream. It was tomato. I don't know what this kind of tomato is called. It is not cherry tomato. I will call it miniature roma tomato. The red tomato in the picture is 1 1/2 inches long. I was nicely surprised because the tomatoes were yummy. My mom asked for one. I teased her by placing one real close to her mouth and then I quickly retrieved it and put it in my mouth instead.

I peddled about half of the time with minimal prompting from my mom. You might have guessed that there must be dogs out there. You are wrong! There was no dog in sight. My mom kept saying, "Good peddling!"; "Good job!"; "Way to go, Timothy." I could tell she was pleased.

My mom must be impressed by my efforts. When we arrived home, she went inside and got me some ice cream. I had to work for it though. My mom took me out biking the second time. And, being "powered" by the ice cream, I peddled about 70% of the time.

Jesus loves me

My grandma is now in New Jersey visiting my uncle’s family. She called this morning asking my mom to look for a photograph for her. My mom has not looked at the photo albums for a long, long time.

Viewing them brought back a lot of memories. For example, my mom saw my daddy’s pictures without hair. He was diagnosed with cancer when I was 3 years old. My little sister was 6 months old at the time. My daddy went through a major surgery and then several courses of chemotherapy. He passed away when I was 5 years old.

Not all the pictures brought back sad memories. My mom saw pictures of me and my little sister getting baptized on April 15, 2001. That was a happy day for her. I looked very handsome in my grey suit. My sister also looked very nice in her pretty dress. I wish I know how to post those pictures so that you can see the smiles on our faces.

My mom taught me how to say, “Jesus loves me”. She does not know if I understand these words. However, she is certain that God can speak to me in a special way to let me know that He loves me.

Perseverance

It is so easy to take things for granted. For example, think of all of the things you can do, including the activities of daily living. So many of the things you can do just happen “naturally”. Don’t forget to count your blessings, as this is not the case for me most of the time. Even simple tasks, such as putting my socks on (I still cannot put them on right), took months and months of training. I don’t know if I want to count it as my blessing that my mom is a “rehab” nurse. She makes me work as she believes in helping me to reach my maximum potentials and she wants me to be as independent as possible, even though (realistically speaking) I will never be independent.

If you do not understand the meaning of perseverance, you need to come to talk to my mom. She does not give up and that means there is no escaping for me.

Walk for Jesus update - I have raised $3,360.

Buddy Bike

My sister helped me in uploading a picture of my buddy bike so that you can see what it looks like. She refuses to ride on my bike because she does not like attracting attention. It does not bother me a bit because half of the time, I am oblivious to what is happening around me.

In this picture, I had my sister's MP3 in my hand. That is one of the "perks" I get for going on the bike. I have learned that the more resistant I am, the more attractive the perks become.

Alaska Cruise

Since I enjoyed my last cruise so much, my mom started to watch for a cruise deal departing from Vancouver, the closest port from us. We went on an Alaska cruise in May at 73% off.

My mom told me about taking me on a cruise, but I didn't understand her. She tried to explain to me about the ship and shows. I still didn't have a clue what she was talking about. I finally realized what was happening when we were about to board the ship. I started to grin from ear to ear and my eyes must have sparkled. My mom noticed my joy and it made her happy.

I, of course, went to every single show including the comedian talk show. The comedian started the show by singing "Yesterday". My mom's heart sank because, for some odd reason (unknown to her), I don't like that song. I have a Lawrence Welk show video tape. Whenever that song came on, I turned the video off. My mom was relieved that I stayed. I didn't understand a word the comedian said, but I still managed to have lots of fun. When other people laughed, I laughed. When others clapped, I clapped.

I fell in love with a new activity - work out in the exercise room. I went on the treadmill and then the bike because I am familiar with using them from having one of each in my own room at home. Then I got bold and tried other exercise equipment. Since that day, as soon as I woke up, I headed to the cabin door and I told my mom, "Step, step, step."

If you want to see me in action, come to the Jasper Place Sports Centre. I go there a couple of times a week to work out - "step, step, step" I go.

Walk for Jesus update - I have raised $3,260.00.

Bahamas Cruise

Staff shortage at the Beraka Residence has benefited me greatly. Last October, my mom took me and my grandma to New York for 5 weeks because there wasn't enough staff. It was wonderful for me, but not so much for mom as she had to look after me 24/7. To make it worse, I had diarrhea for 3 weeks (Thank God this mishap did not occur during the cruise). It was hard work for my mom and she was greatly stressed by the fear of me soiling other people's properties.

Last summer, a friend of my mom gave her a website (vacationstogo.com) to look up cruise deals. This has greatly enhanced my quality of life as it makes it affordable for me to enjoy a new experience. After we booked our flights to New York, my mom checked online regularly and found this Bahamas cruise for 68% off.

The cruise was my mom's break with no cooking or chores to worry about for 1 week. The ship was beautiful and I just loved it. I added a new word to my vocabulary - show. That definitely was the highlight for me. Can you imagine my delight of watching the fantastic shows of music, singing and dancing?

I giggled aloud in my sleep. The cabin was pitch dark and my mom had to turn on the light to check on me to see what I was up to in the middle of the night. I wasn't up to anything - I was simply happy. As soon as I woke up, I would take my mom by her hand and led her to the cabin door and said, "GO!"

I have nothing to report on with regard to the progress of the Walk for Jesus event. My mom will have to work a little harder on it.

Dogs

My mom and I went out for our bike ride again this evening. I helped her much more than usual. I was peddling really hard even when we were going uphill. Based on the title of this blog, you may have guessed the reason. We came across two large dogs, one of them was not even on a leash. I was trying to get away as fast as I could. So, today my mom had it easy for a change.

Update on Walk for Jesus fundraising event - I have raised $3,250.00.

Ice cream

My mom is going to be stressed as one more staff has announced her resignation. I am coping well with the staffing shortage. As a matter of fact, I am thoroughly enjoying this situation. I get to be with mom a lot these days. On Tuesday morning mom took me on an LRT ride. We went from one end (university) to another (Claireview).

I do not enjoy all of the activities my mom offers. An example is going for a bike ride. We have a "buddy bike" (a 2-seater bike). When it was new, I was excited about riding on it. Now, the novelty has worn off and I don't care to go on it any more. My mom uses a variety of strategies to entice me, such as ice cream, mango, MP3. Ice cream has been effective . . . . . I wish mom is more generous with the ice cream. I only get 1/2 scoop at a time. I finish eating it all within half a block. Then I tell my mom, "Go home!" She always responds like this, "We will go around the block and then go home." Going around the block means at least 10 blocks. I peddle some of the time to help her . . . . . only when it goes downhill. Maybe there is a reason for mom to be giving me so little ice cream - I am not exercising enough.

Piano

I used to love playing the piano. I played everyday and I could spend over an hour at a time in front of my piano. Then, suddenly, I didn't want to play any more. When my mom opened the piano, I would go and close it. I have not touched my piano for years. My mom was saddened by this change and she wanted to regenerate my interest.

She started taking piano lessons about 3 months ago. This is really tough for her because, unlike me (I have talent in music), she is really "musically challenged". At her last lesson, she did poorly as one week was not enough time for her to practice all the new music. Thank God her piano teacher is busy and gives my mom 2 weeks off. She practices diligently everyday to catch up. She can memorize "O Canada" now.

Initially, I stayed away from the piano when my mom practiced. Gradually, I began to sit in front of the piano and played a few notes with my mom giving me hand-over-hand assistance. One of my mom's first lessons was playing "CDE EDC CDEDC CCC". I love that and I laugh every time the tune is being played. Now when my mom places my fingers over the right keys, I can play it on my own.

Tonight, I got brave and I sat beside my mom as she played "O Canada". She encouraged me to play along with her and I did. I don't know the notes, but I know the rhythm. I know when the song ends. I clapped my hands to encourage her and to cheer her on.

Fundraising update - I have raised $3,120.

Believe in me

My mom believes in me and my abilities. So do many of my relatives and friends.

I have signed up for the "Walk for Jesus" event to fundraise for Chinese Outreach scheduled for September 22, 2007. Chinese Outreach is a Christian organization with a radio broadcast ministry to share the good news with non-believers. I am happy to be a part of this meaningful event as my contribution to the kingdom of God.

As a result of the love and support of many wonderful people in my life, I have now raised $3,100. More donations are coming in and I would like to thank everybody for their support - not only in terms of donations, but also prayers. I will keep you posted about the progress of my fundraising efforts through my blogs.

Beraka

Beraka is the name of my home, which was suggested by Pastor John Sun. My mom loves this name as it is very meaningful. The following is the explanation of both the Chinese and English names of my home:

The Chinese name (伯樂) sounds like this - Bok Lok. It is the name of a person who has very good knowledge about horses. There is a Chinese saying about this person. (千里馬常有, 伯樂不常有) It says, "There are good horses that can run fast and far. But there aren't that many Bok Lok." It means that there are good horses, but not that many people can recognize their good qualities and be able to appreciate them. Our staff are the "Bok Lok" who can see beyond my disabilities and appreciate how special I am.

The name "Bok Lok" sounds like another Chinese term (different characters with the same pronunciation), which means much happiness. The Beraka Residence (百樂之家) is indeed a happy home filled with laughter.

The English name is Beraka. It is a Hebrew word meaning God's blessing. My home is truly blessed and I am really fortunate to have a team of caring and loving staff to look after me and my two roommates.

There is another word that sounds similar - Bara meaning God's creation. All His creations are good. My roommates and I are created by God. We are good and lovable (when we are good, of course). We know we can be quite challenging at times. It takes a special person to love us and appreciate our goodness. Our staff are the special people who love us and appreciate us the way we are.