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

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.

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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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?

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.