Things are finally getting back to normal as far attendant go but I wouldn’t hold my breath! Dave went the art studio today and I am writing my blog. We hired three new attendants who can work for us both which is awesome in case someone calls in so now we have back ups. It was difficult when we weren’t together as a married couple to find attendants, but now it was extremely difficult to find double the attendants. Dave and I like to have two attendants at a time because we each have our separate things to do. Although some nights, we will have one attendant because we are usually together in the evenings.
The last couple of month, Dave and I had the worse luck with attendants. The attendant story that puts the cherry on top is the woman who we found passed out in her car in front of our house. She was supposed to come at 8:00 in the morning but she called me at about 8:15 saying she was running late and she would be there in ten minutes. Well, ten minutes came and went and Dave’s attendant who was scheduled to come at 10:00 come in with a confused look because he was expecting to see my attendant because her car was in front of our house. I called my back up attendant and she came over while Dave got ready for the day.
By the time my backup arrived Dave was in his wheelchair and he, my attendant and his went out to the car. They saw her inside the car unconscious and they knocked on her widow to try to wake her up but she wouldn’t. So, they called 911 and requested EMS and the police. Long story short, she was passed out on crack and the police found a pipe and some pills. I think EMS checked her over but she was okay and quickly arrested.
A few days and she tried to get her job back. She told us that she had a seizure that was why she passed out. The interesting part about it was she couldn’t provide a letter from her seizures because the emergency room diagnosed her. At this point, we knew she was lying!
Usually my blog is about AAC but I would like to discuss the phrase “Living a Normal Life”. Living a normal life can be subjective in that people define normal differently. My normal has always been what the average person accomplishes in their life. For instance, I was with an abled-bodied man for fifteen years. Did that make me more normal than marrying a man with a disability? I guess some people think that being with an able-bodied person makes them look more normal.
Now I have been married to a man with a disability and I truly don’t see the difference. However, personality wise I prefer my current husband because we like to do the same things and we share a wicked sense of humor. We like to go to concerts and we really enjoy taking trips together just like a “normal” couple. Some may say my life has been more than average since I went through a separation.
For all of the people who think being with somebody who is able-bodied I want to tell them it doesn’t make you more normal. You still have a disability either way.
The first Pittsburgh Employment Conference (PEC) was in 1992 and was organized by Support Helps Others Use Technology (SHOUT). The purpose of the conference was to raise awareness of the extremely high unemployment rate of people who rely on AAC. Although the initial focus of the annual conference was employment other topics such as sexuality, depression, and growing older were also addressed. The conference also gave people who rely on AAC the opportunity to socialize with each other and form lasting friendships. Unfortunately, due to funding issues there hasn’t been a PEC since 2011.
Most people use software such as Go-To-Meeting or Skype as a way of collaborating and sharing ideas with one another across the country. This concept has been applied to conferences where the presenter has videos of their speeches and the conference participants can tune in and watch. Then the conference organizers setup scheduled live chats with the presenters to answer questions and interact with participants. I think this idea can be applied to revive PEC because it is cost efficient but it still enables interaction.
I would like to start discussion about having a similar conference via the internet. Please share your suggestions and comments following this blog or on Facebook. I would love to hear from users, family members, and professionals on this important subject.
Over the last few months I have been having difficulties accessing my SGD. Normally I access my device with my left hand, but I have lost control over it. This makes me feel very frustrated and angry that I cant do what I used to. It is kind of like breaking your arm and it never heals. I always hope one day I will wake up and it would miraculously work again. I find myself getting depressed because I have lost another ability.
About a year ago I started to get Botox in my right arm and hand to help stop the involuntary movements. It did help a great deal so I thought I could get the shots in my left arm and hand to help me to have better control. However, my doctor told me I have a lot of dystonia (Involuntary muscle contractions that cause repetitive or twisting movements) in my left arm and Botox wouldnt help. So he has referred me to a brain and spine neurologist to have further tests.
In the meantime, I am trying different access Methods to see if I can access my SGD more efficiently. People always think eye gaze is the answer but it doesnt always work especially if you cant hold your head completely still. I do have personal experience with an eye gaze system and it was frustrating at best because I continuously moved out of the cameras line of sight. The camera kept needing to be recalibrated which wasted a lot of time. I have also tried scanning with a single switch but I found it very time consuming and slow.
The best option I have found so far was the Tracker. With a Tracker a special camera is attached to top of my SGD which tracks light from a reflective dot that is on my glasses. The reflection moves a cursor on my screen and I can select the buttons I need. I like how I can adjust the sensitivity of the cursor movement to compensate for my involuntary spastic movements. I will be posting an article in SGD Tips section soon about setting up a Tracker.
Welcome to Kate’s Mentoring Connection. The purpose of this blog is to provide information to help users to get everything out of their Speech Generated Devices (SGD). I will provide tips to users, parents, and support professionals on multiple topics such as different types of Apps on Android and Windows platforms for SGG’s. Also offer social tips such as conversation and informational scripts, and mentoring services via Sype, Facetime, Video messages, etc. Lastly, in today’s technology era, people download apps on their phones and tablets to control of their environments. They can control the TVs, dvd players, cable boxes, etc. all with their cell phones. I can guide people who use SGD’s to download universal access apps and no longer spend countless hours programming remote signals in their SGD’s and no one loses remote.
My favorite part of this blog is its potential for becoming a source of mentoring people who used a SGD. At a very young age I mentored younger kids and in my early college years was asked to work one week at a camp devoted to kids who used SGD’s. During the week the kids were provide with facilitated communication by professionals. My role as a mentor was to provide support and training for the Direct Service Providers and to interact with campers. I used my communication device to communicate with the campers, so they could really get a picture of what it was like to have a SGD.
For five years, I worked in a school district in a similar position and it was quite rewarding. With in 3 months, I had successfully moved a middle school student from a 6 locations, single hit SGD to a 144 location system. He was so intrigued by how I could communicate with my 144 SGD, he wanted to try mine which I let him practice with, and he was able to tell us all kinds of stuff. I remember that he figured out how to access the spell page and he was spelling words. His speech therapist and teacher were amazed because they didn’t know he could spell.
I hope with my experience, I will be able to provide others with motivation to use their communication device.