The Trials and Tribulations of Life
It has been three months since I have blogged because Dave and I have been in the process of finding, hiring, and keeping attendants. It has been a nightmare. We hired four people, two in which we really liked. The first person only worked two days and then picked more hours at her other job. The next one was totally awesome. She would cleaned most of the day even brought her own vacuum and got all cobwebs off the ceiling. She worked any shift we needed her too. One day she came to work with a sad face and said her husband had offered a management position at a large grocery store in Dallas. We lost two good attendants in a month and if both were working us now we would have it made!
I just celebrated my 45th birthday and I hope in “my new year” I will have better luck finding and keeping attendants. I can’t believe I turned 45 and my parents are in their late 70’s. Gasping to find solutions for Dave’s and my attendant care problem, we considered moving to Houston where my sisters, mom and stepfather live so they could be our backup when we didn’t anyone to help us. Although, the reality is that my parents can’t care for our physical needs because they are struggling to take care of themselves. I guess it is true parents take care of their as they grow up and then the children take care of their parents as they get older. But how can I reciprocate? I want to help care for my parents but I am not sure how can. I will figure it out, I hope!
In the midst of finding a solution to our attendant problem, Dave received an email from the owner of the art studio where he paints. She is planning to develop a community for people with and without disabilities to live alongside each other. Disabilities will range from physical to intellectual. This community will have apartments and individual homes that will be wheelchair accessible. Dave and I plan on purchasing one of the houses in this community with the hope that our community could serve as backup attendants for us. We will incorporate our neighbors who have intellectual disabilities to help us eat, clean, etc. It sounds like a wonderful answer to our attendant care problems but it will be at least two years for this to be in place.
I have nothing in particular to write about, just about things that has happened over the last month that stand out to me. Last week I went to one of my besties, Julie’s, because she was having a “before selling her house” party. It was kind of shocking to find out she was moving but she is in her sixties and I knew she liked to travel, especially liked the Texas Hill Country. She plans to end up moving there eventually. It is funny because I think I will probably see her more because she won’t be so busy when she comes to visit Austin. Well, I will still have to compete with her grandchildren.
XFor me her party ended up being a reunion of friends/former co-workers that Julie and I had in common. It was so awesome to see everybody. I found it interesting that I worked five years in the Austin ISD in the Assistive Technology Department with some of these great people and knew what was going on in their daily life. But now we hardly see each other. We went through the good times, laughed a lot, had disagreements, cried together, and a whole lot more. We even went to out of state assistive technology conferences. Once we took a road trip from Texas to Florida for a conference, we made a few stops along the way tin New Orleans and a little cabin in the Florida pan handle. It was one trip I will never trip especially when my two friends walked me into a restaurant and the staff thought I was already drunk. I ordered a daiquiri and the waitress said, “Don’t you think she already had too many.”
I tought those years would last forever but times change. Seeing my former co-workers took me back to those old times. For a moment, I felt like we were back working together again. Especially when my communication device fell on the concreate floor while I was going up a make shifted ramp the screen cracked. We laughed because there were so many times that we received calls from teachers or speech-language pathologists saying that their students’ communication device had fell and the screen cracked. Julie commented, she never thought about taking my device of my trey before I went up a “make shift ramp” that broke.
On another note, this week was Spring Break and one of my attendants had to bring her kids to work. Her kids had come with her several times off and on for about six months. Her boy is five years old and he loves me to play in him. he loves to ride on the back of my wheelchair. He puts his little cars on my tray and I tried to push them. Many of the time they end up on the floor and he will pick up put them back on my tray. He does this for about three minutes and ask me if I am done playing and I say yes. My favorite part is when he is about to leave, he comes over to hug me. I hold my arm of out and he will walk into it. Then I will grab him with my arm and give him a big hug. I get about 10 hugs!
She also has a 9-year-old daughter who likes to help with my care. I joke with my attendant that her daughter is trying to take over her job. She likes: to put on my glasses, give me my phone, re-stock the refrigerator with cokes, and give me a drink when I sit on the couch. Sometimes she will feed me chips or candy. I would hope that if they had a kid in their classroom with a disability, they would be friends with them. The daughter would probably be more concerned about their care because one time when they were leaving my house and no else was going to be home with me, she was so concerned that no one would be with home to take care of me.
Trip to the Neurologist
Yay, I am writing this with my left hand. I finally got an appointment with a Neurologist for my bad arm. I missed my first appointment to the due to attendant issues (that is a subject for another blog), on Thursday I went to the Neurologist. After the doctors examined me (I saw a resident who consulted with another doctor in the practice), they decided to put on a medication called trihexyphenidyl. This is a medication mostly use for Parkinson’s patients to control the trimers in the body. I have on the medicine for two months and I already notice a difference. It is allowing me to type this blog, a greater relief. The doctor said that he can go higher on the dosages, if I need too
He also ordering a CAT scan to make sure everything looks right in brain. I know he find some cobwebs up there but hopefully nothing else.
Trip to the Neurologist
I am going to the Neurologist tomorrow. We will discuss medication options that help might the dystonia in my left hand. I am not getting to excited because I am afraid the doctor won’t prescribe anything to help. On the other hand, they might know exact medication to prescribe me. It is a wait and see situation but at least I will find out in a couple of hours.
Greetings from Kate’s Mentor Connection
I am working on putting together an AAC Focus Group made up of people who use Augmentative and Alternative Communication (AAC), their family members, and professionals who support AAC. The purpose of this focus group is to obtain feedback about having access to a mentor for social and communication building support. More importantly, what does the AAC community want from an AAC mentor? I have five years of experience working for a school district as a full-time mentor/teaching assistant. I used my communication device to communicate with the students so they could really get a picture of what it was like to have a conversation using a device. It was so amazing to watch their eyes light up with a glow that said, “Hey, she is using a communication device to talk to me. I can do that too!”
I would like to have a similar setup using Skype, Facetime, etc, to have face-to-face conversations. I believe this will have the same effect as mentoring students in schools. Furthermore, it will encourage them to access social media such as Facebook, twitter, etc. By using these forms of social media, people who use AAC can experience new ways to communicate with friends and family.
If you are interested please email me at firstname.lastname@example.org and answer the following questions:
I would like to practice a script when I go (Put a “X” by those which apply)
ingredients to bake a cake
shopping for shoes, clothes, etc
to see a movie
would like ask social questions such as “Where do you live?”
Which of the following video chat platform are familiar with?
Speaking One Word at a Time or Composing a Message Than Speaking the Whole Sentence(s)
Speech Generated Devices (SGD) come with the function to speak one letter at a time, one word at a time, or wait to speak an entire sentence. It is usually the person using the SGD who chooses how they want their device to speak. Some people choose to use a combination of two or more speaking functions with their communication partner(s) and the environment.
A person using a SGD might turn on the speak one word at a time function, if they are responding to questions in a big audience, or maybe it is only one person who would walk away if they aren’t receiving constant feedback. Another reason a person might want to speak one word at a time would be to keep their communication partners engaged in the topic while they compose their message(s) to contribute to the conversation
On the other hand, there are times a person needs to compose their message(s) and speak their message(s) at once. Situations such as: being in a meeting with several people (face-to-face or conference calls), in classroom discussions, answering questions, or composing message(s) and when you don’t want people to guess what you are going to say.
Facebook App VS Logging Into Facebook on the Web
Everyone is on social media these days from Facebook to Twitter and others. I am more of a Facebook woman myself. I use it as a leisure activity to catch up with family and friends. I post, read family’s and friends’ posts, leave comments, and view pictures. My husband likes to play games on it. Several months ago I had the opportunity to meet with the accessibility team for Facebook. They wanted to know how I used Facebook with my communication device. I showed them the Mouse Arrows which allow me to control the mouse myself. I have pretty good accuracy and get faster every day. Although, it is still time consuming for me to use my mouse keys, so they taught me a couple of key short cuts to help me navigate through Facebook. Unfortunately, these only work by logging into Facebook on the web instead of the Facebook app. These are the following short-cuts:
P = Make a post
J = Forwards
K = Backward
L = Like a post
C = Comment on a post
There are the benefits to using the Facebook App with an integrated SGD device (an SGD device that can access the internet. The Facebook App can be pinned to your task bar (the top line when Windows is activated) which gives the user easy and quick access to Facebook. Of course if you don’t need to use “short-cut keys”, the app is much easier to use. If I enlarged the text on the App, I am able to scroll through the news with my fingers; which I love!