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Search Results for: how to talk to someone using an AAC device

AAC: Never leave home without it

October 8, 2019 by Mary1991 2 Comments

Jessie’s mini iPad and my 8S iPhone.

Today I needed to use the app Speak for Yourself to help me talk! Being that October is AAC awareness month, I found this very serendipitous!

In years past, I have chosen to go voiceless but today after a dental appointment, I was in need. The right side of my face was numb, the corner of my mouth was drooping, and I could barely drink from a straw without dribbling. The last thing I wanted to do was talk, however, I had errands to run before my next appointment and I needed my voice. Fortunately, I have SFY on my phone for modeling language. In fact, I never leave home without it and I was good to go.

My first stop was for gas. I used the Hold That Thought feature to preprogram the phrase, “fill up with regular please”. Of course, I could tap out those words, however, being mindful of the line behind me, I chose the quickest way to make my request. When the attendant handed me the receipt, he smiled when I tapped, “thank you”. What impressed me the most was he was unfazed as if he sees someone using AAC every day. The reality is, it’s rather rare. If I’m lucky, I see one, maybe two people a year out in the community using devices.

The next stop was Trader Joe’s. The checker asked if I found everything and I tapped yes, and then said, “thank you for bagging”. I showed him my phone while it spoke and that helped him quickly connect the dots that this was my voice. He winked.

Nearer home, I stopped at my favorite coffee spot. I’m a regular and often chat with the cashier. After I tapped thank you, she tilted her head in question. I then tapped, “I am not able to talk”, then added, “dentist” which was all the explanation I needed. Next time I see her, I’ll tell her what AAC is about and why it is important to our family but now I was running late and had to scoot. It was a little frustrating to “talk and run” and didn’t complete the spreading awareness mission. As important it is to see AAC in action, it needs to be explained. Though none of these were long conversations, it was enough to convey my needs.

For every three people we have shared our AAC with, we’ve witnessed at least one of them telling another person, “we just met a girl who uses an iPad to talk”. Now if every AAC user did the same, our world would be that much bigger and this is what awareness is all about.

Filed Under: Now we are talking

Small talk leads to big Talk

January 17, 2017 by Mary1991 Leave a Comment

After listening to my mother and I chatting, my father once said: “the sum of your conversations is nothing”. Well, maybe it was until it wasn’t. Often Dad would listen and then ask us to repeat something when he heard a tidbit that interested him.

In my father’s defense, even though he wasn’t interested in the daily minutia, he loved learning. Dad also enjoyed sharing a good story. One of my favorites was about his serving in the Navy. He was on the aircraft carrier the Shangri-la. He told us about the time he had received a letter from a buddy who was in the army and was complaining that the food was cold. Dad replied using the back of the ships menu for stationary. As much as his friend enjoyed the letter, he re-read that menu. I need to share this story with Jessie. Dad passed a month before she was given the Angelman Diagnosis, just after she turned 13.

In order to captivate someone’s attention, you need to talk about something that intrigues them. Even though my father wasn’t fascinated by woman’s small talk (my husband falls into this category) that doesn’t mean these conversations aren’t important.

When Jess was little, on rare occasion, she’d pop out with a word or short phrase. I assumed that she was going to talk. Even though this never came to be, because of my belief, I never stopped talking to her. Our longest conversations were had on long car rides and to this day they still are.

While driving, there are no outside forces to interrupt us. If a good song came on the radio, I would look at her and she would turn up the volume. While I sang like a cat, she’d bop her head to the music.

In between the songs, I’d talk about where we were going, who we would see and share stories. Sometimes Jess listened with rapt attention, but she often drifted off to her own thoughts. As I write this, I’m realizing how much she is like my Dad. If I say something that is of great interest to her, she becomes completely engaged.  She’s also inquisitive like he was.

Now fast forward 25 years. Our story is slightly different. Jess is still not one for small talk and we don’t make conversation per se, but she is beginning to open up more. What’s difficult for Jess is that most everyone she meets has never met anyone that uses an AAC device. This means that at home, we need to step it up. Even though I’m talking and she’s tapping her words, her conversations broaden when I use a Talker. I’m reminded that I should speak her AAC language on a daily basis… I need a kickstart. This week we began the 12-week AACtion plan challenge but we are doing an accelerated version. Initially, this was to help make me become a better communication partner, however, this time I thought we should do this together. Thank goodness, Jess has better Talker skills than I do.

At least this exercise gives us more to talk about. Jess gets satisfaction when I have to search for a word, especially when she can find it easily. What I am careful about is to not make her feel like she is being tested.  I don’t have her repeat the words 10x like they expected at school, but rather follow her lead and repeat once or twice. I’m the one that needs the repetition.

There’s an aspect of SFY that often gets overshadowed by other features. The symbol initially helps you find the location of a word, but the written word is also found above the symbol. At dinner last night. I thought I was being clever and spelled to husband S-A-L-A-D because I wanted Jess to eat her dinner and not just salad. Jess immediately tapped “salad”. Then I asked her, “did you say that because of what I spelled?” and she immediately replied “yes”.

Jess has never been taught to read.  Of course, we sang the alphabet and tried to read to her, but due to her three-second attention span that wasn’t very successful. What is noteworthy is even though I didn’t think she was following along, she was. Even though she didn’t give me any indicators that she understood, she did. When using an AAC device, hearing the word models language and seeing the written word is helping with literary skills. How exciting!

I’ve had a few conversations recently with other Angelman mothers who told me that Jess is doing so much more than their child. In many cases, Jess is significantly older. I’m also careful what I write about when it comes to Jessie and her challenges. This is her story and I’m privileged to share it. Because of this, a lot is left to the reader’s imagination. You need to know that we struggle and she has made steady progress over time.

What most don’t realize is where Jess started from. Jess’s path reminds me when I was in 5th grade. I remember not understanding something in class, but when it was reviewed in 6th grade, suddenly I got it. This seems to be Jess’s road too, but it’s taken her years rather than months. It’s so important to reintroduce things where they have failed.  It might not be the second or tenth time they find success, it may take 500x.

It’s been a long, long, long road, however, I believe that it was our small talk that kept Jess thinking and her big Talker that has changed her path forever.

Just keep talking, just keep Talking…they are listening!

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Filed Under: Now we are talking

Preparing for an AAC Big Year!

January 14, 2016 by Mary1991 Leave a Comment

IMG_7256A Big Year is an informal competition based on the honor system among birders.  The person that sees, or hears the most birds gets to hold the title.  I’m declaring this be an AAC Big Year!  Of course, this is not in any way, shape or form a competition with another user. The focus is to achieve our personal best.

To kick off our year, we are using this AACtion plan. The theory is, if we improve the communication partners modeling skills, the AAC user’s success rate will increase as well.  This is not just a theory, after only a few days on the AACtion plan, we  are already  hearing results!  Yesterday, while on an errand run, Jess used some of the target words. How encouraging!

When introducing new vocabulary, Jess and I first sit together.  It doesn’t take much to overwhelm her when working/modeling one on one.  I get the “oh mother” sideways glance, a big sigh and then she exits stage left.  Jess is like that horse you lead to water, learning can’t be forced.

Jess often sits on the other side of our double fireplace to listen to conversations in the connecting room
Jess often sits on the other side of our double fireplace to listen to conversations in the connecting room

I’m finding it is just as effective to go into immersion mode while she is in ear shot.  I didn’t realize my using SFY to talk to the dog, the cat, the husband, had such impact?  Up until now, I thought Jess suffered from mommy deafness.  Who knew that you can model from across the room?  Sure I suspected it all along, but not until now did I realize one of her special gifts was eavesdropping!

Jess is an efficient AAC user, but I have not stretched her to elaborate on her thoughts. This is because I didn’t know how.   Jess’s style of talking has gotten her by at home, but doesn’t work with people who don’t know her, much less those who have never seen an AAC device..

The harsh reality is, if I don’t speak SFY,  Jess will have no one to practice with.  Sadly, in three years, only twice has she been with other AAC users.  The first time was when we were at a picnic for Angelman Syndrome families (there were only two other devices and no low tech AAC’s were in sight).  The other time was at a SFY workshop and EVERYONE had their device. Oh what a perfect world it would be if we could meet  AAC users on a regular basis… I’m putting this out to the universe and adding it to my wish list.

I’m convinced that Jess’s level of communication will improve as I increase my SFY usage. The realization has hit me that when we both go out that I should use a device too.  I need to model outside of the home when speaking to people we don’t know.  Unless I’m able to do this, how can I expect her to?  Since she is no longer in school, this is the most logical path.  Not only does Jess have to learn how to hold a conversation with people outside our immediate family, but we need to pave the way for other AAC users that follow.

On a side note, Dad gave Jess a puzzle over Christmas. He thought it was something they could do together. I LOVE this idea, however, the puzzle is too difficult for her fine motor abilities.  Of course, we’ve tried playing with puzzles over the years, but Jess was not able to tell up from down, lacked spacial awareness and was not successful. In the early years, there wasn’t a puzzle easy enough.

Just because you fail, doesn’t mean you stop trying.  For now, I put the ambitious 300 piece puzzle aside  (chosen because it had a pretty picture) and instead we are working on a 24 piece wooden puzzle. We are experiencing success!  I’m witnessing how far Jess has come. Because Jess has been using SFY, her fine motor and attention span have improved exponentially!  While I’m teaching her the skills to work on a puzzle (find the corners, straight lines, color matching), this is also giving us more language to talk about and this comes right back to the AACtion plan.

Whodathunk that a lesson plan would be a catalyst for so many changes?  This project has increased her word usage, we are talking more AAC as a family (all devices are on the table during breakfast and dinner) and it has given us a jumping off point to expand our conversations. I repeat, we are seeing benefits after only a few days! This is just brilliant!  Why has this not been done before? There have been core word monthly lists shared, but practicing words without a plan wasn’t very successful for us. It lacked meaning for someone like me that needs structure and is out of their element.

Unless you are able to practice words in a purposeful and meaningful way, it’s difficult to remember the motor plan.  Take heart new and old #speakingAAC users, this system works no matter what AAC program you use.

Go AAC Big or go home… I’m already home, so I have no excuse, I’m going big!

I do declare, this IS going to be a BIG AAC YEAR!

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

New AAC app user? now what?

April 2, 2015 by Mary1991 Leave a Comment

For Autism Awareness, Speak for Yourself is half price today (April 2, 2015). Maybe you’ve had this app for a little while, or maybe you waited for today to pull the trigger, regardless, be prepared for your world to change, in a good way.

First, if you child can access the iPad, then they can do this.

Second, you can do this too.

So now what?  If you are new to SFY, it may seem overwhelming. Take a breath. It’s okay. When we started, I had never used an iPad and didn’t even know what an app was. By the end of the first week, I was programming SFY while sitting at a traffic light.

The first lesson I learned was about the importance of guided access which is an Apple feature. Within the first 10 minutes of Jess using SFY, she deleted the app. I’d left her alone while I let the dog out. When I returned, it was gone. Easy fix. Reinstalled via the cloud and lesson learned. [Read more…] about New AAC app user? now what?

Filed Under: Now we are talking

Voiceless But Still Talking; Looking back

August 5, 2014 by Mary1991 3 Comments

It is true, the best way to understand someone is to walk a mile in their shoes. In our case, one week in October 2013, I did not speak. My only communication was through the App Speak For Yourself (SFY). Not until the challenge had begun, did I realize that it was AAC Awareness month. I do not believe in coincidence.

Having a week of immersion allowed me to get a better understanding as to how my daughter, who has Angelman Syndrome, has to navigate through an AAC device. This was the hardest yet most rewarding week I’ve ever had!  It didn’t take me long to realize how many assumptions I had made. I wish everyone could/would do this challenge. I guarantee that if you do, you will walk away with a new appreciation of how difficult it is to be non-verbal in a verbal world. If you can’t commit to a week, do this for a weekend, a day or 12 hours.   We learn language through immersion and using a device is not much different than speaking with your voice. You need to use aided language. Your part is to model, model model.  If you had thoughts that all you had to do was hand your child an AAC device and they will magically talk, think again.  This is a team sport and everyone has to participate. [Read more…] about Voiceless But Still Talking; Looking back

Filed Under: Back story, Now we are talking

Frustration; it’s why I blog.

December 4, 2017 by Mary1991 2 Comments

When I started writing, three and a half years ago, there weren’t many blogs about young adults with Angelman Syndrome. It seemed once your child aged out of school, they might as well have dropped off the face of the planet. I wanted to know, what happens next? So, I started writing about Jess, an older Angel, hoping that something I said would help another parent. By sharing our journey, the mistakes, the lessons, and the success, maybe, just maybe someone else would benefit. In our own way, we have been trying to pave a way.

At one time, there was little expectation for the Down Syndrome community. However, the parents pushed and questioned what they had been told was possible. By presuming competence and raising expectations, the perception with regards to abilities morphed into “anything is possible”. I believe the Angelman Community is following a similar path.

When Jess was finally given the correct diagnosis (at 13), she was taken off the educational track and the focus was on self-help skills. This was done with my knowledge, however, I was naive. I didn’t realize why the change until years later. I didn’t realize that the diagnosis caused the shift. I dumbly followed schools lead believing they had her best interest at heart.

Because communication is the foundation for learning, my main focus for this blog has been about AAC. These are the bullet points that you need to know:

  1. if you child isn’t able to communicate, you can ask the school for help, but most likely, you will need to research AAC apps and devices yourself. Be aware that SLP’s are not created equal and are not required to take courses in Augmentative and Alternative Communication. They learn after they graduate, on the job and many do this on their own time. Where once speech was about articulation, there’s a growing need for SLP’s to be versed in AAC technology.
  2. When asking for supports from school, put it in writing. They will kindly blow smoke up your butt making you believe action is taking place when it is not. Requests do not exist unless it is in writing.
  3. AAC evals are only as good as the person giving the evaluation. A two-week trial isn’t enough to know if the AAC is a match.
  4. If you succeed in getting an AAC device, insist that it comes home with the child. Consider the device a voice prosthesis. A child wouldn’t leave a wheelchair at school and come home without one and they shouldn’t leave their voice at school either.
  5. Ask for training, not just at school, but in the home too. You need to know how to support your child. How can they be successful with an AAC app unless you are able to model comfortably? You can’t just hand the child a device and expect them to talk and they especially need someone to talk to.
  6. Get the whole family involved. Get your friends involved. Have your child out in the community using their Talker. Share with those that have never seen an AAC app in action so they understand this is your child’s voice and not a toy. Not only will this help your child but will make your child’s world bigger because it will encourage acceptance.
  7. There is no such thing as too old to learn.

For Jess to have a voice and the ability to speak for herself has been life-changing. If you are reading this and are waiting for school, do me a favor. Stop talking for an hour or two and try and communicate to your family. Or go out into the community and try and get help. You will learn quickly how difficult it is to not have a voice. So how old is your child that isn’t talking, seven, twelve, eighteen? Do you think you could be as patient without a voice as they are?  If they’re acting out, then they have given you their opinion. If they aren’t responding, maybe they have given up. Jess was a combination of both. We are trying to make up for that now. It’s the best we can do. The point is, don’t wait for school.

I guess I’m writing about this because I’m frustrated. It saddens me when I learn schools do not follow through and let time go by.  Either it is due to ignorance or because they want to save their district money. This I know because I’ve had many teachers pull me aside over the years saying such. They’d share with me their concerns and how the administration has constrained them. I realize our schools are overwhelmed, however, you have to be the squeaky wheel.

Unfortunately, I didn’t learn all of this until Jess was about to age out of school. I was ignorant about how technology was changing, however, the SFY app wasn’t available to Jess when she was eight (though that first device worked initially, it soon became apparent it didn’t meet her needs).  I shudder to think what Jess’s life would have been like if we hadn’t found her voice when she turned 21. Fortunately, no child should have to wait that long anymore.

PS- I forgot to mention, even though I was labeled “that over-involved parent” and teachers were “warned” about me (told to me recently by one of Jess’s teachers), I didn’t buck the system till her last two years of school. Up until then, I followed the school’s advice. In all transparency, I was that parent whose child didn’t have a (reliable) voice when she was 18.

Filed Under: Now we are talking

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