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Search Results for: pay it forward

AAC- Pay it Forward

October 5, 2017 by Mary1991 3 Comments

Every month has a holiday associated with it.

New Year’s, we wipe the slate clean.

June is for brides, graduations and the start of summer.

Then there is October, which is AAC awareness month. Fooled ya. Betcha thought I was going to say Halloween! I’m not afraid of spooks but I am afraid that people don’t know what AAC is.

Over the course of Jessie’s day, she sees only one other person using an AAC device (we call it her Talker). Imagine going to the market, a party or to work and no one expressed themselves or talked the way you did? Jess isn’t speaking a foreign language but she might as well be when she talks through her AAC device. This is why awareness is so vital. Half our problem is that people don’t know what AAC is much less it’s many forms. The other half is the assumptions people make.

For example, yesterday Jess and I were at a planning committee meeting. She saw a plate of cookies and asked for some using her Talker. Fine. No problem. Then she smiled at the lady sitting next to her and did her version of shaking hands resulting in the “oh aren’t you special” treatment (I mean this as no disrespect because Jess does present herself this way. It’s her way of working a crowd).

As the meeting went on, I don’t recall if Jess was making a comment, or was exasperated by the first speaker monologing (there were five more departments sharing reports) when she tapped “ridiculous”. This caused three people in earshot to chuckle and they gave knowing glances. At that moment, the woman next to Jess did a double take, she was re-assessing Jess. I then asked Jess to put her Talker into whisper mode so she didn’t interrupt the meeting again. I’m pretty sure she was bored and wanted to change the subject. 

Whenever Jess goes anywhere, she wears her Talker. Every day she is exposing people to “her” voice. However, we need to do more.

For AAC awareness month, our wish is for every family that uses a device (or any of AAC’s many forms) to Pay it Forward. Tell three friends and ask them to tell three friends. Explain that when they share that they are making our world bigger. I want AAC to be as commonly known as a phone.

And if you are not an AAC family, I want you to pay it forward too. Here’s a sample script:

You: I just met a person that uses AAC

Them: What’s AAC?

You: It’s augmentative and alternative communication.

Them:  What does that mean?

You: Dude you are already using it… when you text on your phone, you are talking without speaking. Some people aren’t able to speak so they use a computer to talk for them. 

Even emoji’s are AAC.

Actually, this script wasn’t made up. A few years ago we were having breakfast at IHOP. I overheard our waiter tell a co-worker how Jess ordered using an iPad.   

Even though we educate people every chance we get, there is more emphasis during October. I’m hoping that when people Pay it Forward we feel a ripple effect because awareness has been shared. 

Remember, knowledge is good!

 

 

 

 

 

Filed Under: AAC, Now we are talking, Speak for Yourself

One person at a time…

September 1, 2015 by Mary1991 Leave a Comment

IMG_9946As Jess got on the van this morning to go to her work program, we noticed there was a substitute driver. Rob has driven her several times over the course of the year. However this morning, he asked what was she carrying with her? He was referring to her AAC device. Like most people, he has not seen someone speak through a computer. [Read more…] about One person at a time…

Filed Under: Now we are talking Tagged With: AAC, Speak for Yourself

A day in the life of an Angelman Mom

June 25, 2018 by Mary1991 Leave a Comment

My favorite day is Monday. This is when everyone goes back to where they belong. Husband to work, Jess to her program, and I do the voodoo that I do. In less dramatic terms, my job consists of all those things people pay others to perform. Except for balancing the checkbook, mowing the lawn, oh, and working on the cars, my to-do list is everything else not named above.

Sure, being a stay at home mom sounds glamorous, and working mothers have looked at me with envy, but don’t think I’m eating Bonbons on the couch.  All I’m saying is the grass isn’t greener. In fact, my private pasture is rather isolating. At least my job isn’t as stressful as those who have to juggle home with work, however, it’s a FACT that they get paid better. (I get paid in hugs and kisses so…not complaining).

Though it may appear as though I make my own schedule, it really revolves around her health and the family’s needs. When Jess first started attending school, it seemed as though she was sick at least once a week (along with the rest of her classmates). We spent our spare time either visiting specialists or going to therapy, some of which I could only get appointments during the day. Even so, I was able to work part-time when Jess was in school and my boss did not grief me when I needed to be home. Not everyone is so fortunate.

As soon as Jess recovered from the flu that kept her home all last week, I came down with a cold. Disrupted sleep, long nights, and being “hands-on”, my resistance was low and it was only a matter of time. When the nasal drip started, my paranoia, fear of what was to come, ran rampant. Fortunately, I only developed a summer cold. I felt lousy but it could have been much worse.

The first time I had the flu was years ago. It happened within a week of having my one and only flu vaccine. That strain of flu was rather violent compared to our recent experience. I remember asking my husband, “can you please stay home?”

“No, I can’t, I have meetings” 

Fortunately, my sister drove two and a half hours to help me off the floor and into the bathroom.

A day or so after I recovered, my husband came down with the same virus. The sweetest words I ever heard were, “I’m sorry, I had no idea, I was wrong”. From that day forward, he never ignored my request for help.

Today’s thoughts upon waking were about taking a nap. I took this as a sign that I needed more rest and canceled my obligations. By 8:30, Jess’s ride hadn’t shown. Her Program told me that staff had called out and they were short-handed but a ride was coming. 45-minutes later, I learned that the driver had forgotten Jess and they were sending a car for her asap. At 9:45, her ride arrived. I’m not upset with the driver. She was picking up the slack and this wasn’t her regular route, however, in her rush she didn’t have a complete list and Jess was missed. Once a month they have early dismissal and, of course, that happened to be today. This is the first problem we’ve had with this group. The school buses were famous for not showing up at all. I’m happy those days are behind us.

As much as I wanted to rest, I ended up dealing with SSI (for Jess). Last week I received a second notice that I had missed an appointment, however, I never received the first notice. The letter threatened to end her services if I didn’t respond. All previous calls I made had gone into voicemail. The third time was a charm and did get to a person. It was then I learned my contact person only works part-time, so I was fortunate that she answered. A phone meeting has been scheduled and the problem resolved. That’s a win.

Even though today wasn’t great, we are all on the mend and Mondays are still my favorite day. As I read this, I realize my life is ordinarily boring and I’m okay with that. At least it gives me time to catch my breath.

Filed Under: Now we are talking

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