Tuesday, November 1, 2011

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.

Sunday, May 8, 2011

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.