Ups and Downs in my Life

I have not written for a few years.  It is time for an update.  Since I moved home to live with my family in 2012, life has been filled with multiple challenges for the rest of my family.  I am the one who benefits the most from this living arrangement, as it enables me to grow within a loving and supportive environment.  I am happy and I am talking more.  I found out that if I can say it, I get what I ask for most of the time.  My success rate is higher when I can say it in a full sentence.  For example, "I want ice cream please."

I feel a sense of emptiness for not seeing Uncle Wales for a long time.  I miss him and I search for him whenever I am at venues that we used to visit together.  One day my mom talked to me about him.  She mentioned about saying bye-bye to Uncle Wales.  I didn't fully understand what she said to me.  My mom knew I was sad because I looked despondent.

My family felt that I was overdue for a vacation, so my mom took me on an Alaska cruise.  I had a great time, as I loved the shows.  Having dessert every evening was a real treat.  With menu in hand, I would repeatedly say, "cake" and "ice cream".  My mom and I ordered lava cake whenever that was on the menu.  Was that ever yummy!  After my mom tucked me in, I giggled aloud for up to half an hour before I fell asleep.   The cruise was so nice that I would love to go again.

Something unpleasant was waiting for me when I came home from the cruise.  I was scheduled for colonoscopy on my birthday.  I had no idea what was going on.  In such case, ignorant is a bliss.  On the day of the test, my mom took me into a room with a small bed by the wall.  She tucked me in.  I looked at her and smiled.  With a sparkle in my eyes, I said to her, "ship".  I honestly thought I was going on a cruise.  My dream was soon shattered when a nurse came with a needle.  The good news is that I am fine and will not need to have this horrible test again.

Disneyland

I went to Disneyland with my family and spent 5 days in the theme parks.  I have had a fantastic time and got so tired out each day that I needed a nap in the afternoon and I snored through every single night.

Before the trip, Emily and Peter downloaded YouTube Disney ride videos for me to view.  This enabled me to get familiar with rides that I have not been on previously.  More importantly, these videos helped me in making choices as to which ride I would like to go on.  I tried many new rides this time, one of which was the Bobsled ride.  If I have not been shown the video, there was a good chance that I would not agree to go on it.  I had so much fun that I went back on it a few more times.  Tea cup used to be my most favorite ride, but not any more.  I actually refused to go on it several times when I was asked.  There are other rides that are more thrilling to me, such as the lady bug and tow trucks.  The lady bug ride is not new, but it is faster this time.  My mom didn't want to go on it with me, so she helped me to get on and went out to watch how I giggled throughout the ride.

I have asked to go on the Small World ride several times by pointing to the direction.  I like the ride, but I won't say it is my most favorite.  It is definitely the most visible to me, so I asked for it every time I see it.  My liking to the Autopia ride was obvious to my mom, so she took me on it repeatedly.  I am now able to manage the gas pedal and the steering all my myself.  I like the bumper car too, but not as much because I am not as competent on this ride yet.  

Emily has wanted me to try the Splash Mountain ride for a long, long time.  When I viewed the video, I said yes to the ride, but when I saw the actual "drop", I said no.  Finally, the decision was made by my family for me to go on the ride.  The ride was fine up until the drop.  I am not at all impressed, so I said, "All done!"

Count My Blessings

It has been more than a year that someone has helped me with writing.  This past year has been one of major transition for our entire family . . .

At the end of March of last year, I moved back home to live with my family again after being in a group home for 14 years.  Emily, Peter and Adelaide moved into our new home a few months earlier.  My mom and grandma moved in a couple of weeks prior to my move.  The past few months have been a period of major adjustment for everyone.  We are still adjusting and trying to settle into a routine.  Living in harmony as a 4-generational household does not come naturally.  We have a lot of learning to do.

While I was still in the group home, I experienced agitation episodes on a regular basis – sometimes as frequent as several times a day.  The intensity of my agitation was also on the rise.  My mom took me to see a neurologist and he prescribed a medication for me.  My agitation totally disappeared, but I was also falling asleep all the time.  My medication dosage was regulated to allow me to function better in terms of being more alert and motivated.  As the frequency and intensity of my agitation reduced, my family was able to work with me and help me to improve the quality of my life.  In consultation with the neurologist, my medication was further reduced and as of January 22, I am no longer taking it. My family prefers to deal with my periodic agitation than to “drug” me.  I am very blessed that my family has my best interest in mind, rather than going for what is the easiest for them in terms of supporting me.

Peter bought me a tablet to explore how we can utilize technology to improve my communication (both how I can communicate to others and how others can communicate to me).  I killed the first tablet by kneeling on it.  Ouch to Peter’s pocket book, but lucky for me, as I ended up with an upgrade.  The tablet proves to be very helpful and that earned me another very nice upgrade.  As you can clearly see, I am really blessed with a loving and caring family!

As my family struggles with the day-to-day challenges of supporting me, it is easy to forget counting our blessings.  In addition to what I have already mentioned above, I have more blessings to count:

1.  It is very apparent to others that I am happier since I moved back home.  I have a space of my own that I feel safe and secured in it.

2.  Peter and Emily have worked very hard on setting up my tablet to be easy for me to use as a tool for communication and for making choices.

3.  I am vocalizing more and I have added a few more words to my limited vocabulary.  This proves to be very useful to me.  Being able to say "Future Shop" earns me trips to the store to look at speakers.

4.  I am now responsive (without being prompted) when others say "Good-bye" or "Good night" to me.  I also spontaneously say "Hi" to others when I see them.  This is something I have never done before in my life.

5.  I have developed new relationships by going to Dim Sum with Grandma and her friends and by attending a music group regularly.  These relationships are more "mothering" than "friendship" in nature.  Nonetheless, the experiences offer me the opportunity to interact with others outside of my immediate family.  It will be nice if I can meet up with younger people.

Our Family's Hopes and Dreams

My mom has not helped me with writing my blog for months. Being busy is not the only reason for it. She has been hesitant in writing about our future plan because she does not want to cause anxiety or alarm to my roommate's families and to the staff at my group home. I have mentioned about building a house in my previous blog. This new home will be for our entire family, which includes me. Our family will have to sell our current residence. That means my roommates will need to move and my moving out of the group home will affect the staffing dollars creating job losses. Our plan is now common knowledge, so it is okay to share openly.

My family has observed that I enjoy spending time with them. Also, I learn new skills and use my speech more while being with them. The gains are particularly noticeable when I spend extended periods of time with them. Unfortunately these gains are not sustained after I return to my group home setting. Moving back to my family home is going to benefit me significantly. Our goal is for me to lead a more inclusive and meaningful life.

Today, my family met with my PDD (Persons with Developmental Disabilities) Community Support Coordinator to submit a funding application for hiring my support staff. There are a few not so positive possibilities. I may not be able to access my current approved funding from my service provider. Even if I can, it will only be a small portion of my support dollars. As a result, my application will be for "new" dollars, rather than transferring my current funding to support me at a different location. If PDD does not have available funds at this time, I will have to wait. If my family chooses to take me out of the group home without approved funding, they will need to take care of me until funding comes through. I am not considered to be in an emergency situation, so my application will not be viewed as priority.

At this time, we do not know whether funding will be approved or not, and how long it will take. My mom will not be able to sell our current home until funding is approved because she does not want to move me twice causing additional disruptions to my life. In such case, my family will need to pay for two mortgages.

Spending Time With Mom

Same old comment - my mom has been ultra busy. Despite being busy and neglecting my blog, my mom still spends time with me on a regular basis. With Emily and Peter home, I get to play Wii games and Mariokart whenever I go over next door to visit my family. I say, "Ball" when I want to play the Tilt Table game. Peter made me an album of picture cards for me to choose which Mariokart track I want. Sometimes, Adelaide comes over to grab my remote controls. That doesn't upset me at all because I like her. I want to kiss her all the time.

My life hasn't been uneventful even though my mom has not helped me with blogging for quite some time. In early December of last year, our family (with the exception of Grandma) went to Disneyland. I still remember the teacup ride and it remains to be my most favorite ride.

Emily, Peter and Adelaide are currently in Australia. They have been gone for over a month now and will be home in a few days. After this trip, there will likely be no more extended trips for our family this year because our new house is finally under construction. It is important for mom, Emily and Peter to be around to monitor and to make decisions from time to time.

Since I won't be going away on vacation this summer, my mom decides to take me on a couple of short trips so that I can get away and have some one-on-one time with her. She took me to a camp over this weekend. She plans to take me to Calgary at the end of June.



I had a great time at the camp. My mom allowed me to make decisions on what I want to do and where I want to go. She would like me to be more physically active, but that was not my choice. My preferred activity was to go to the cafeteria and watch the fans. I spent several hours each day doing just that. My mom wished she had brought a book with her.



Another activity I was willing to participate in was the carriage ride. I rode on the carriage a few times to tour the different areas of the camp. I must say, it sure beat visiting all those places by foot. My mom did manage to talk me into walking a little bit and took me to the petting zoo. I, of course, refused to get near it. I asked for the camera by saying, "cheese". With the camera as the bait, my mom got me closer to the fence. She showed me the bunnies and I fell in love with them. I got brave enough to walk close to the cage. I pointed to a bunny and said, "bunny". That was my way to get my mom to pick up a bunny for me to see. My mom picked up one after another multiple times to keep me interested. I eventually became comfortable enough to stand right next to it, but I couldn't bring myself to touch it yet.

There was a band and they played loud music. I loved it. On the first evening, I sat through the talk and got a few compliments. The second evening, I walked out of the room whenever the pastor spoke. I returned when I heard music. I was in and out of the room for the rest of the evening. After my mom tucked me in bed and turned off the lights, I giggled and laughed out loud. I repeatedly verbalized "fan" and "music". Both mornings, I woke up at 5 am. and I was ready to leave the room immediately to head out to the cafeteria. This morning, my mom used a variety of tactics to keep me in the room. My perseverance won out and we arrived at the cafeteria at 7 am. We sat there till breakfast was served at 9 am.

Mom Has Been Busy

I have not written for months because my mom has been ultra busy. The only thing that can slow my mom down is for her to get sick. It is unusual for her to be ill and when she does, it generally hits her hard. She came down with the flu over a week ago and she is still suffering from it. Despite her high pain tolerance, she takes Tylenol everyday to cope with bone and muscle aching. Her throat feels raw and she has taken more lozenges this past week than her entire life time. As she gets better gradually, the bug is going around in our household. Both Peter and Grandma are not feeling well. Hopefully, Adelaide, Emily and myself can remain healthy.

My mom went to Vancouver in July to attend a cousin's wedding. She stayed at Emily and Peter's apartment to help with baby care and packing. Initially, the packing was extremely organized and donation runs helped in reducing the moving load. As time ran out, everything went into boxes for moving. Under Peter's supervision, box contents were to be organized and not random. Nonetheless, finding things can still be a challenge at times. They rented a big U-Haul truck and moved back to Edmonton at the end of August.

When our family moved from the westend home to Millwoods and then from Millwoods to our current address, the experience was similar to Emily's move . . . only it was much, much worse. My mom did make attempts to sort our belongings. She couldn't possibly cope with the workload, so there were random stuffs packed in same box and there were "untoouched" boxes being moved from one location to the other. Having been in our home for over a decade, there has been more additions to our garage/basement when other extended family members moved and needed storage space.

Emily and Peter's moving home marked the beginning of a frenzy of cleaning house, IKEA trips for shelving units, organizing accumulated messes, and donation/ECO station runs. The job is endless and work is still in progress. My mom appreciates Emily and Peter's help in this horrendous task of getting our home in order. A lot more work is needed to be done yet.

Camping Trip

My mom and I left for Clearwater, British Columbia, at 5 am. Thursday morning. It was so early that it took my mom a long time to get me out of bed. I was sleepy and quiet most of the morning. I don't generally sleep while traveling in the car. By the afternoon, I was so tired that I was giggly. After 9 hours of driving, we arrived at our destination. My mom checked into a motel and started to unload the car. I refused to stay in the room and got back into the car. A 9-hour drive was not long enough for me! Shortly afterwards, Emily, Peter and Adelaide arrived.



We visited three waterfalls in Wells Gray Provincial Park the next day - the Helmcken Falls, Dawson Falls and Spahat Falls. The Helmcken Falls is very pretty and it is considered as the Park's main tourist draw. Due to my love for water, I enjoyed watching the rushing water and listening to the roaring sounds. Sometimes I refused to leave the area. While on the trails, I walked slowly or came to a complete stop due to distractions by my surroundings. My mom engaged me in a game of hide and seek by getting behind a tree. I had a lot of fun running toward the tree to find her. That was very effective in getting me to go from point A to point B.

We came across three bears in different locations of the park. My mom, Emily and Peter were happy to be able to see them in such close proximity. We were in our car, of course. Otherwise, the encounter would not be described as "happy".

In order to expose me to a new experience (tenting), we checked into a camp site on Saturday. I have camped many times before in our van. However, the last time I slept in a tent was when I was 2-year-old.

My mom and I slept in a big tent with a fly over it. I called out, "mommy" and pointed to the top of the tent. A big bug (an inch long) got trapped between the tent and the fly. I laughed out loud as I watched the bug flew back and forth frantically. That kept me entertained for a long time before I fell asleep.

It started to rain at dawn and I was probably waken up by the sound of raindrops on our tent. My mom noticed that I was staring at the top of the tent. She asked me, "What do you see?" I said, "滴滴" (meaning drip, drip). I love water and I thought it was so funny having water dripping onto our bed. We planned to camp for 2 nights, but the rain cut our stay short and we came home on Sunday.