Mike’s Communication

Hello,

This is Andrelei here. I am married to Mike’s brother, Bert. In January, I began working with Mike on his communication device (an iPad computer with the Vocochat program).

When I first volunteered to take this up, I had no idea what I would be up against, but I was willing to give it my best effort. I went into it with a strong desire to help Mike be able to have a voice again. Mike has so many thoughts circling through his head, and like so many other people, I’d really like to hear all what Mike would like to say.

I’ve been working alongside a speech therapist to try to find a device that will fit Mike’s needs. This has been no easy task. One of our biggest obstacles is that Mike struggles with his vision. This is yet another area of the brain that the PML has attacked. This means that Mike’s visual impairment is neurological and cannot be simply fixed with just glasses. There is no way for us to tell exactly what Mike can and cannot see. Because of his vision issue, an eye gaze computer was quickly ruled out.

In January, I worked with a system where Mike wore an earpiece that acted as the mouse. With his head he could guide the arrow to the area on the screen he wanted to click on. In his left hand he held a button switch that he would click when he got the arrow to where he wanted it. This was quite a challenge.

Because Mike has a hard time keeping his head steady, the mouse was all over the screen. It was so many steps for him; first, with his poor eyesight, he would search the screen for what he wanted, then, with his unsteady head he had to get the arrow to that place, and third, he would have to click the button in his hand to finally select what he wanted. This caused many mis-clicks, and it became clear this wasn’t going to work.

I started questioning the speech therapist for another option and this past week we started him on a new system. Now the computer automatically highlights rows at a time until Mike selects the row and then it enlarges and highlights each option in that row until he gets to the specific button he wants to go to. This takes out the use of the mouse and just leaves the hand clicker. We are feeling more optimistic about this new option. At this time, it is so incredibly slow!

To give you an idea, it will probably take him about an hour to write a sentence. A very tedious process! But we are hopeful that as Mike practices and gets more comfortable with how it works that we will be able to speed it up.

Mike is able to get his day-to-day needs met with his limited speech, but he also has a desire to say more. His whole goal with this communication device is to be able to use it to text people. Mike may never be able to be fully independent with it, but we would like to bring him as far as possible. This means that I keep customizing the program to suit his needs, making it more user-friendly for him. The screens need to stay simple with the options very large and bold due to his visual limitations.

As Mike gets better at working the computer, I will be able to add more options to it. One thing we did try was WhatsApp. However it didn’t take us long to realize that the WhatsApp on the Vocochat program was not at all user-friendly for Mike. If this new way of using his computer proves to work for him, we will get him a SIM card and he will, hopefully, be able to text that way instead as it looks to be much simpler.

I have a few different ideas to try to make texting happen, but we aren’t quite there yet.

Over the week, I have been taking Mike’s computer home so I can make the necessary adjustments in the program. Last week, I was busy working on Mike’s computer and didn’t have it ready for him so I decided we would try write a card instead.

Using Mike’s letter board, we spelled out what he wanted to write. This also is a tedious process and takes so much patience, both from Mike and myself. I like to tease him that he has spelling like his brother. Missing letters and wrong letters often leave me scratching my head as I try to guess what exactly Mike is trying to spell. It was a very short note, but it was Mike’s words and that’s what counts.

I try to work with Mike once a week for a couple hours. Up until now it’s been a lot of trial and error to find something that might work. Finally, with a more positive direction it has become very clear that a couple hours a week is not enough practice for Mike. Unfortunately, I can’t give more time. Ideally, Mike needs an hour each day to work on it. Mike’s Mom and William are going to try begin helping this also.

We remain hopeful that over time we will be able to establish a solid way of giving Mike a voice again. If you receive a random note, a card, or a text message just know that Mike has put a lot of effort into it, no matter how short they are. Each little bit of it is done with laughter and tears.

This is just the beginning of Mike being able to express himself in words again. Even though the road ahead will be challenging, I will continue to do my best to support MIke in his desire to communicate.

On Tuesday he told me, “I like it”, and as long as his determination continues, I will continue to try find a way.