Neurodiversity

Going Silent for International Angelman Day

As many of you know, I decided to go silent for International Angelman Day on February 15th, and I used only my daughter’s PODD app to communicate during the day. Besides raising awareness and fundraising for Angelman Syndrome, I also wanted to share how difficult using AAC devices really are and hopefully gain some insight from the experience. Insight indeed, this was a completely eye opening experience!

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Not even ten minutes after I’d woken up that morning, I realized how much I hated PODD! I used the expanded school 15 symbol pageset on an iPad mini, which is what I’ve been modeling and using with my daughter for the last few years, but I really haven’t appreciated the difficulty of having to use it, until I was exclusively speaking with it last Thursday. Oh. My. Gosh.

By 8am I had already been misunderstood and the gravity of not being able to say everything I wanted to say, had really started to sink in. I literally was close to tears by that point in the day already. It was so tedious to use the device that I truly had to decide which things I really wanted to say and which were not worth the effort.

And mind you, I don’t have the visual, auditory, or sensory processing struggles, or the dyspraxia or apraxia that a lot of individuals using these devices have. Plus I can read and write just fine, where a lot of individuals using AAC have only emergent literacy skills.

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I want to talk about some of these observations and experiences I had in the hopes that it may shed some light on the difficulties associated with AAC use, and encourage compassion on these individuals learning to speak with these devices, and encourage others teaching them to not give up!

First and foremost:

AAC devices are crazy difficult and tedious to use!

I didn’t want to use it. At. All. I often hear parents or speech therapists remark that their child shows no interest in using AAC or that he or she doesn’t want to use it, and therefore teaching him or her to use it is a lost cause. And a lot of time this is after maybe a month of “trialing” a device. Well, here’s a light bulb moment for all of us- I’m pretty darn sure THEY DON’T WANT TO USE IT! Duh! But please please understand that they absolutely DO want to communicate their thoughts accurately. And even though these devices are extremely difficult, they are a heck of a lot better than having nothing at all.

It’s going to take a long time for our kids to learn to speak with an AAC device. And that is okay. In a recent training I attended, Kate Ahern mentioned that learning to use AAC is much more consistent with learning to read, not speak. This basically means that it’s ridiculous and cruel of us to think our kids are going to know how to use these devices without much time and consistent teaching of the AAC device, and literacy instruction. We can’t give up! They probably do hate using it (especially initially when it is so confusing), but it’s the best we’ve got right now and these individuals desperately need a voice today.

Maybe we need to reevaluate which system we’re using and find one that fits our individual’s needs better. But it’s so important to just pick one and stick with it! And it is essential we choose a robust system with full comprehensive language access- one that can be used in all functions of conversation. And remember- high tech is not necessarily better than low tech. Both have pros and cons. My system rebooted several times during the day without me wanting it to and it was super irritating!

Everything happened just way too fast.

Using AAC to communicate with is slow. SO slow. I often lost opportunities to speak because I simply couldn’t put the words together fast enough to say something before the moment was passed.

And unless I knew where a word was located, I sometimes had to search a bit, which took even longer. I ended up using the alphabet and word prediction a bit more than I wanted to because I simply couldn’t find a lot of words. It’s so important for us to model how to explain if a word is missing from their device.

It made a huge difference too, to have situation specific pages already opened. For instance, it was much easier to talk about cars and traffic when I was already on the “Vehicle” page while we were in the car, than having to navigate to it right when the thought came to mind. Having access to core vocabulary throughout the system made a huge difference as well.

If I didn’t have the iPad on me, I lost opportunities to speak even faster. It’s got to be carried around at all times, in all circumstances. I forgot this once early on in the day and quickly realized what a foolish mistake I’d made when I wanted to say something and my iPad was on the kitchen table in the other room and by the time I’d grabbed it, the moment to join the conversation had gone. It was incredibly frustrating.

We can’t leave devices at home or in another room and assume that the individual using it won’t mind because they can’t say otherwise, or because they aren’t currently proficient enough to use the device. How would you feel if your voice was dependent on someone carrying around an iPad for you? I would imagine you wouldn’t want them to forget it or complain about how annoying it was to always drag it along.

It’s so important to slow down. Slow down when we’re modeling, not rush through the day, and give plenty of time and opportunities for AAC users to express themselves.

Others were disappointed in my difficulty speaking, and spoke to me less. 

I was really surprised at how upset my son became with me throughout the day. He really didn’t like that I couldn’t talk easily and actually stopped speaking to me as much. And I can tell you it was because he began to assume that I couldn’t engage back in conversation with him to the degree he was comfortable with. How often do we simply not speak to individuals who use AAC because we assume they can’t respond? Because we selfishly don’t want to engage in what we might view as a one sided conversation?

It’s so important and meaningful to have language constantly spoken around and to individuals using AAC, especially modeling their device. Think of all knowledge these individuals might miss out on from simply not being able to ask questions as much as the typical person. It was helpful when someone did attempt to answer unasked questions I had.

It was awkward and terrifying to speak AAC to strangers. 

I’m not going to lie, I was terrified at the thought of having to engage in conversation with anyone that day. How would I explain what I was doing? How would they perceive me?

I went to Target to get some groceries and purposely went through the self check out to avoid talking to anyone. After I checked out, I realized that my store coupons hadn’t applied, and I was bummed because a couple dollars is a couple dollars! But instead of going to Customer Service to get my refund, I just left the store. I was short on time already and how would I explain what had happened at all using my iPad, let alone in a reasonable amount of time? I’m sure I could have, but I didn’t, and rather than feel awkward I just left. And I left feeling like the biggest chicken in the world and totally defeated.

How often must that be happening to these individuals, where something wrong has happened and they can’t say it? Or they’re just too embarrassed to look like the weirdo sticking out by using their device at all? I’m an adult grown woman who’s pretty comfortable talking in front of people, and I’m ashamed to say I couldn’t do it. It would take a lot more than a day and many different circumstances  to become comfortable using it in public. So let’s give these AAC users a break. Let’s be respectful of how awkward it is to speak with these devices, and lead the way by example and use them ourselves in public.

Later on in the day I decided to stop at a fast food drive-thru with the kids and order two corn dogs. If anything, I was curious to see if the speaker would actually pick up my automated voice. It did! I successfully ordered and paid for my kids’ corn dogs and felt pretty darn proud of myself! We should be aware and acknowledge AAC users and their accomplishments in using these devices.

Being able to quickly & persuasively argue and negotiate were nearly impossible with my AAC device. 

Another interesting thing I experienced was my son totally taking advantage of me that day! We homeschool and thankfully his curriculum is online so I basically just had to tell him to get started, but he made it a point to not listen to me and complain about doing his work (more than he typically does lol). And I couldn’t easily persuade him to do his work! It was so difficult to explain why I wanted him to do it, and it just wasn’t an option to use the tone of my voice to imply I meant business. I had nearly no negotiating abilities and I was extremely frustrated about it!

This one really hit home with me. Individuals who use AAC or don’t even have access to a device can often be seen as exhibiting negative behavior when they don’t transition easily from one task to another. How cruel it is of us to think this is “bad” behavior and focus on compulsion or managing the behavior rather than teaching a skill. The ability to negotiate and argue one’s case is essential. What are we doing to help these individuals know how to negotiate and be persuasive using their AAC devices?

Complex ideas were extremely difficult to explain.

At one point in my son’s schoolwork, he needed me to explain what inefficiency or self-reliancy were and how they related to farmers who had moved to cities to become factory workers during 19th century America.

Ummm…. Yeahhhh…. definition of inefficient: PODD. Lol

Don’t get me wrong, PODD is a fantastic AAC system! But again we have to be so careful to realize that it’s not a lack of intelligence on the part of the user, but rather some things are just truly so difficult to express using these devices. We must assume these individuals are capable of learning difficult grade level subjects and be generous in what we expect them to express about it. We need to be patient and give plenty of time for the expression of complex ideas. Literacy skills are so essential in this respect.

It was easier to be quiet.

A lot of the time I would rather just be quiet than use my device, because of how tedious it was. I also didn’t like the pressure of having to use it, so I found myself preferring to being alone more than usual.

We actually had plans to go out of town that day before I realized it was International Angelman Day, so we ended up in a three hour car drive with me only using PODD to talk with. I could tell my husband was disappointed, but honestly he was very understanding and talked to me the same way he would’ve anytime. I was grateful for that. Sometimes I just wanted him to talk because it was literally exhausting using the iPad. It took so much additional effort that I was happy to sit in silence for quite a bit of the drive.

A handful of times I’d think of a movie quote or story I wanted to share but I just didn’t want to put forth the effort. We cannot assume these individuals don’t have a lot to say. The safer assumption is that they have just as much to say but it’s so difficult for them to say it.

I found myself laughing more heartily whenever I had the opportunity because it felt so good to just make a natural sound and let off some of the anxiety and frustration I was feeling. I managed to crack a couple jokes during the day and it felt great to make others laugh. Humor did help me throughout the day! It’s okay to laugh at the way these devices pronounce words or how we fumble using them. We can’t take AAC too seriously or we’ll dread using it!

I felt much greater anxiety throughout the day. 

It really made me anxious not being able to express myself easily and accurately, especially when we were leaving to go away for the weekend. We have quite a few animals and it was killing me not being able to easily ask my husband if he had taken care of every detail about making sure they’d be taken care of. I really had to rely on him making the arrangements and it was very stressful for me even though I knew he’d take of things just fine.

This again made me realize how important it is to answer unasked questions. I didn’t realize how much my anxiety could be calmed by being able to ask questions and get answers, which I wasn’t able to do easily or quickly. “Where are we going?” “Are we stopping somewhere first?” “Are we going to grab food on the way?” “Did we forget anything?” Sharing as much information as possible about situations that might be stressful or happen fast are critical to assuaging fear and anxiety.

So what next…?

Don’t wait to start teaching AAC and don’t give up. I hated using my PODD app to communicate with, but I can’t even imagine what my day would have felt like had I not even had that. If your child doesn’t have access to a full comprehensive language, start today. It’s never too late. And be patient. I have to remind myself of this often with my daughter.

Thinking we can force or compel these individuals to say things we want them to say with AAC is just rude. If someone had shoved my device in my face and demanded I say something or insisted I “use my words” I probably would’ve slapped them! Learning to speak AAC should be natural and desirable. I think the best way to accomplish that is by us using it to speak ourselves. All. The. Time.

I will say, I probably learned more motor planning and familiarity with my daughter’s PODD in that one day using it exclusively to communicate than in the two years I’ve been modeling it somewhat irregularly. If I want her to use it proficiently, I really need to step up my game, and daily and consistently show her the pathways to all the different words she has in her device. And I have to be patient and know that she might not be interested in using it today or her body might not be organized enough to use it at the moment. And that’s okay. We can’t let that stop us. My daughter and others like her have so much to say now, and they’re capable of learning to use AAC, to read, and to write. They deserve our greatest effort.

7 thoughts on “Going Silent for International Angelman Day

  1. Hi Diane, how wonderful & brave it was for you to do this for a day. What an insight! I loved all the things you learned and sharing your perspective and insight so well. I have been so lazy in this area and always feel so guilty of not doing it. I think what is stopping me is exactly what you did for this day and that is, having to model it for them to learn it is just so time consuming and getting the podd pages and all that set up? I am the Grandma here in this situation and life is just hard at my age trying to make things happen for him. He is 12 now and I feel so beaten up at all that has happened trying to fight his battles all these years. We too are not in public school for a few reason . . The sleep issues and being so far away from the school and not wanting him on a van for two hours of his day 5 days a week. I must admit though, having him be in someone else’s hands for the day is very tempting, which, I think is the real reason why a lot of families don’t do homeschool! This brought home to me just what an overwhelming task this all is . . I salute you and all those wonderful, dedicated great Angelmoms out there who are doing such a good job and leaving me in the dust! I pray to God that hopefully someday soon I can get my act together.

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    1. Thank you! And first off- give yourself a huge pat on the back because you’re doing your best and you are enough! I know all about guilt. I do try to remind myself that we can only do the best can with the knowledge and resources we have at the time. 💛

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  2. Diane,
    Thank you for posting this! I tried to do the same thing a few months ago and became so frustrated I almost gave up on the App. I then thought back to the trainings and what I know about feature matching and choosing the right vocabulary set and realized that I needed the 60 to be able to say what I needed to say. What a difference it made. It also reminded me that we choose a pageset for the STUDENT not what is comfortable for me. Way to stick with it! You are an amazing parent and I plan on sharing your blog post with all my parents, no matter what device or system they may be using right now. You have a new fan..
    sincerely, armen

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    1. I am so glad you enjoyed this post and thank you for your comments! It really is so difficult to use just AAC to speak with! Honestly I immediately questioned whether this PODD set is the right one for us, but like you said it all depends on the individual who it’s for. Interestingly my daughter tends to gravitate towards low tech AAC, probably because it’s easier for her to physically access and make mistakes without the page jumping that happens on the iPad. Eventually I see us using an app with a qwerty keyboard and word prediction, so literacy is super important for us on this journey too. It’s just going to take a long time!

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  3. This is an amazing post!! I am an SLP and I am going to share this with teachers, parents, paraeducators, colleagues. My explanations and pleading for keeping communication systems by the student, modeling the students method of communication, and providing real opportunities to communicate do not it justice compared to what you said! I might challenge all of my parents/teacher/ paras to spend even an hour using only their students communication system to communicate. Thank you!

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