Communication

There are many different ways in which Jason and I communicate. When most people think about communication, they think about speech. His computer seems like the obvious tool, but there are many other ways we can also use to communicate with each other.

• Facial expressions

• Gestures

• Pointing / Using hands

• Writing

• Drawing

• Using equipment e.g. Text message or computer

• Touch

• Eye contact

I cannot think of an instance that we have written or drawn something. But other people communicate with Jason via emails or letters, which is writing. I'll add that every email sent to him is read! He does not usually reply as it is very difficult for him to free type, but he does read and appreciate your emails. Kids, including our nieces and friend's kids, have drawn him pictures :) all of which end up on the refrigerator!

Top left from Clayton,

Top right is from Brody,

Bottom is drawn for Jason from Emma

Inside the "We Love You Uncle Jason" card from Brody.

Jason was sitting in his power recliner

and Brody drew him a few months ago!

To use his computer, there is an addition called eye gaze technology (the bar at the bottom) that sees where his pupils are looking. The software put on his computer is called Essence and is seen on the screen. Setting up the computer requires it to be on a stand at a correct height, which puts the bar at eye level. Optimal distance, per the company, is for the computer to be 18-22 inches from his face directly in front of it. Jason prefers 22-24 inches. There is a short calibration process where he will look at a moving dot at different areas of the screen to ensure it is recording his eyes correctly. We often do it several times before Jason is satisfied with it.

He is way more reclined that "optimal" in this picture. Power lasts about 7-8 hours fully charged. We did have a power issue where our cord BROKE mid May around 9:30 at night on a Friday. I searched the house for about an hour looking for a substitute cord and apparently, this one is specially made for this computer and is medical grade. So I ordered overnight shipping for a new cord, only to learn overnight is for M-F. We got it Tuesday, so it was a rough weekend of losing that form of communication!

Imagine a computer in front of the face 24-7, including the bright light at night! We have altered furniture for this computer, and we alter the stand depending on how it needs to be set up. Jason sits off to the side of the TV so that the computer does not block his view of the screen. We do the same in our bedroom as sports games are on late and he usually finishes watching in bed. If he wants to get in his recliner in the living room, we have to alter the legs on our stand because the stand will not fit under the chair. Jason's wheelchair has a stand as well, but he rarely wants to use it. We bring with us to appointments so that Jason has a "voice" if he wants. For the most part, he communicates to providers and clinicians through me. The stand attached to the wheelchair does not fit into the van because of the distance and height of the computer, which creates a whole other issues, which I'll discuss later.

Ever heard the expression "90% of communication is nonverbal" Well, not exactly, but here is an article that explains: How much communication is really nonverbal?

I would say that our communication would have completely different statistics!

Facial expressions: I have them and so does Jason, although his is more subtle! If he is having trouble with the computer or needs something and doesn't feel like using the computer, he appears to grimace or be concerned to get my attention. If he likes something, he will lift his eyebrows. He does flirt with me with his eyes and eyebrows too :)

Tone: I really TRY to keep this under control, but Jason knows how I am feeling by my tone. He will be more patient with me if I am frustrated and vice versa. If I am angry and tired...he gives me longer space between wants/needs.

Gestures/Using hands: I use my hands more than I know! Often there are several options that I will give Jason (options that he could want) and I will hold my hands up so that he looks at one or the other. For example, at night, we will find a sports game or movie on TV. I'll ask what he wants with sports game being looking at the right hand and movie to look at the another-he will look at that hand. Yes or No works well this way. If there are 3 options, I'll ask the question, give the 3 options and where to look for each (left hand, right hand, look at me), then have him look to "pick"

Touch: I think this is the same for everyone, isn't it? But this gives me an opportunity to explain something that I don't think people know. Jason feels everything. I hold Jason's hand in the car, during the day, at night. He feels his baby girl move every night. He enjoys leg and shoulder massages. He can feel pressure and pain, hard versus soft, pleasure just like anyone else. He has itches that he wants itched! Although is doesn't have the ability to move anything, he can feel everything. It is definitely a general assumption that no movement means no feeling, and this is not the case with ALS.

Eye contact/eye movement: If his eyebrows are not effective for helping me first thing in the morning, I will ask him to look at me until I get to what he wants or the letter he wants, then to look away from me to "choose" Most of the day, lifting his eyebrows works though. If he uses his computer to say "Bend my legs," I'll ask him if he wants them slightly bent or all the way bent. He will raise his eyebrows for the option he wants. Another example of this: I will ask questions, give the expected answers, then give the answers slightly slower so that he can raise his eyebrows when he "selects" the answer he wants. For example, Do you want to go for a neighborhood walk? Yes or No? YES........NO....... If he says "pull me," I will ask which way and he looks in the direction he wants to be pulled. I will ask if he can look at what he wants. Sometimes he foregos the computer and just looks at what he wants, and I can figure it out. For example, if he is having computer issues, he will look at his computer. If he wants something done with the TV, he will look at the TV. If he wants the fan off, he will say "cold" with the computer or just look at the fan.

Spelling: This is hard to explain and it is just something that needs to be seen, but I'll try. We both know the keyboard. And I think we took this for granted, because not everyone can picture the keyboard and do this! We came up with this on our own one day, it worked, so it stuck!

If we are talking about something and he wants to make sentences, we will do this. If it is not something in his computer, or he can't use his computer for clues, we will use this. I usually start by asking if he is sure it isn't something I've programmed as a command or wish on his computer or asking if he can use his computer for a clue for me. For example, if he has an itch on his forehead, there are pre programmed body parts. He could say forehead with the pre programmed body parts, and I can try and figure out what he wants done to his forehead! Another example-I have programmed the phrase "I'm ready for arm exercises" on his computer because we do them every day. He could put that with the body part "leg" and I may figure out that he wants to do some leg stretching. I will then ask if he can look at what he wants (also a clue!) Then we will start. I'll say First letter top row, middle row, or bottom row. He will raise his eyebrows when I get to the row the first letter is on. He usually doesn't have to spell but the first 2-3 letters of a word for me to figure out the word and go on to the next. This is all very hard to explain and we can do it very quietly as well, so you might not even know we are doing it. Have I got a great Wal-mart story below on this one! Anyway...

For example: I LOVE YOU

-"First letter top row" (eye brow lift) I will then go through "QWERTYUI" (eye brow lift). I will say out loud "First letter I"

-I'll ask "Is I the whole first word" (eye brow lift) means yes

-"Second word first letter top row, second row" (eye brow lift) I will go through "ASDFGHJKL" (eye brow lift) I'll say out loud "first letter L"

-"Second letter top row" (eye brow lift) I will go through "QWERTYUIO" (eye brow lift) I'll say out loud "second letter O"

With this one, I already know what he is saying at this point and I'll reply <3 I do love my hunny!

Walmart story. We never go to Wal-mart EVER...but we did this day to get some storage containers and return a few items that did not fit the anticipated sizing of our child (6 month summer attire, for example) I was carrying these large boxes, driving Jason, and we were on the way out. Jason had a bug on him, which I hadn't figured out yet, so I put the boxes down. We were spelling and had only done "B" This very sweet man wanted to pray with us. It was such bad timing, but we let him because...I mean of course! Then when Jason was able to finish spelling BUG, it was too late-I couldn't find this bug. Sometimes timing like this is frustrating, but people don't know and this sweet man needed this at the time. Maybe we did too :)

Going places and communicating in the van.

VERY tricky! I have a whole slew of guesses of things typical that Jason wants/needs when in the van, well, at any time I'll rattle off a list of things. I just run through the list until Jason lifts his eyebrows to answer "YES" I'll then do it if I can or wait for a stop light. I use the rear view mirror to see him. He is a collector of sunglasses, but we've gotten away from using them because I can figure out what he wants easier without. Sometimes, I will have to use spelling to figure something out. Sometimes Jason will look at something (like his arms or the dashboard to alert me to hot/cold) which can cue me in on a need/want. A common thing that happens is Jason shifts in his seat and his head isn't in a comfortable or safe position. We use a neck pillow to help, and I'll have to tighten the head rest when we get home. In the meantime, I do what I can to shift him. On long drives, like to NC for baby showers recently, I've stopped on the side of the highway if Jason has shifted in his seat or needs the cough assist machine to clear secretions.

There are days, sometimes several times a day that we want to throw this computer out the window. It has to be in such a perfect position. It doesn't like seeing his eyes with glasses on, it has trouble calibrating, he can't quite get the hang of free typing with the keyboard. It shuts off when it shouldn't. The screen locks him out and I have to "fix" it. It apparently requires a special charging cord! He accidentally hits the alarm every other night (sounds like a fire siren and is VERY loud) If you are staying with us, you will hear it! I could complain about that computer in a longer rant, but that isn't the purpose of this blog! The purpose was to explain that we communicate in many ways. It is frustrating. It is special and unique. It is a combination of all of the above within one little session sometimes. I hope Jason feels that we are as effective as we can be. I hope he feels that he can always ask for anything! While it takes us longer, I hope he always knows that we can talk about anything and everything!