Name it to Tame it: How AAC calmed her world

Using a Tobii (eye-gaze speech generating device) was not something I originally wanted for Scarlett…

From when I first suspected something was going on with her development, to the day when we got the diagnosis of Rett Syndrome, was not quite two years. Two years of asking questions, wondering, second guessing myself, taking her for multiple tests and assessments. It felt like wandering through a mist groping for answers. Only by moving forward would the mist clear; however, that felt like forever. 

At one year old, I  had no idea there was anything going on with her development. By eighteen months I thought she was a bit behind, but chalked it up to being the youngest of four kids. On her second birthday I took her to my family doctor and he promptly gave his opinion: Autism. A year and a half later we were staring down the barrel of a diagnosis of Rett Syndrome as well. 

And that’s when many of her symptoms suddenly made sense; the fog really cleared and we found ourselves in a foreign and lonely landscape. 

Things like why she stopped crawling back down stairs: Regression. 

Why her speech never really went past about ten words she could say: Regression. 

“Mumma” was one of the first and last words I heard uttered from her lips.

We were becoming familiar with AAC (Augmentative Alternative Communication). We had tried PECS (Picture Exchange Communication System); we tried ABA (Applied Behaviour Analysis). We had just started trying Go Talk Now, an app we downloaded on her iPad. Nothing, so far, had really clicked and been overly successful for her in furthering her communication…but I wasn’t going to give up on it yet. 

I sunk into a depression shortly after her diagnosis on September 4, 2015. Just over a month later my Oma passed away. It had been a year of setbacks. New Year’s Eve a few months later found me wallowing in sadness. Someone asked me what my New Year’s Resolution was: “um, surviving?” I thought. The next day I woke up with determination, “Survive? No. I want to thrive.” And that was my resolve, to ask God for a year of Breakthrough, in spite of a devastating diagnosis and time of loss.

The closest Rett Clinic was almost two hours away and that’s where we heard first about eye-gaze technology. We were desperate to help our girl. That first meeting was a bit of a blur and underwhelming – there wasn’t much to be done besides “Carry on doing what you’re doing. We’re here if you need us!” they sympathized. My husband latched on to the brief mention of an eye gaze speech generating device to help her communicate. I don’t remember that. Thank God he did!

“We’re using the iPad to help her communicate,” I told him back at home.

“I don’t want her to stop trying to talk with her mouth completely!!” I pushed back.

Our Occupational Therapist recommended we try the eye gaze system as well, instead of the iPad. I was perturbed.

I felt like I was giving up on her talking by lowering my standards.

Not even our speech therapist had suggested an eye gaze system yet and was encouraging us to use an app on the iPad. But her pointer finger wasn’t the best at being precise…she kind of swatted at it. 

I was forced to admit we had been seeing signs of increasing frustration in her. When I look back on assessments and reports from those years between two and four, I see in the notes, “Mother reports Scarlett biting her hands when frustrated. She bangs her head against her high chair. Sometimes she will get so mad she’ll vomit.” When I had to take the kids into Walmart with me to get some much needed groceries, I recall telling my oldest (twelve years old at the time) to take her outside in the sun and fresh air or “she’s gonna blow!” The fluorescent lights or noises really bothered her and things could go from zero to one hundred in sixty seconds flat. A full meltdown of a screaming, crying kid was about to happen. She needed out of that environment pronto!

I sent my husband after work one day to attend a meeting to get on the waitlist for an AAC assessment. He inquired about eye gaze technology. The Speech Therapist put us in touch with another parent who had one for his son. Without Jay pushing me, I’m not sure where I’d be on the journey with AAC, but that’s water under the bridge now. 

My husband urged me again, “At least meet the guy and see for yourself! What’s the harm in that?” I relented, and agreed to at least check it out. I met him at a Tim Horton’s one wintry morning while Scarlett was at preschool.

As soon as I could see the ease with which my eyes could sweep across the screen and make a selection, I knew we had landed on it; THIS is what she needs. After finally experiencing it for myself, I just knew it was the next step in helping her.  

“Blessed are those who have not seen, yet believe.” I had been a doubting Thomas. 

A week after I sat in that Tim Horton’s to check out the PC Eye Go AAC device by Tobii Dynavox, I was being interviewed by a man from a local Wish Fund. Unbeknownst to us we had been referred to their foundation and we had access to funds we could use for Scarlett as we saw fit. We didn’t even need to discuss it, buying Scarlett her first Tobii was how we were spending it. 

Our regional children’s treatment centre had a two year waitlist to be seen by AAC Specialists to assess her. Two years!! Two years just to be seen by the experts to make a suggestion as to what could help her. It wasn’t an option to sit idly by while she continued to be frustrated in trying to get us to understand her. 

And so. We started naively, uneducated yet with resolve it was a way forward in helping our girl. We used that Wish money to purchase our first device. 

A month passed before I actually sat down and figured out how to set it up. I had no speech therapist with knowledge to support us. With divine intervention, good luck and pluck we plowed ahead, not really knowing what we were doing, but the answers did come and eventually we became unstuck with her communication standstill. Reaching out to ask questions in an online group I recall a perfect stranger responding to my questions and she sent me a personalized video on how to customize Scarlett’s device and set it up for success. This lady lived across the world; I now count her as a friend. 

Within a month of getting her first Tobii we were at the dinner table and suddenly we hear her say with the device,

“Evan, I love you”

By the time it came to her sister, she just gazed at her and smiled proudly as if to say, “I love you too, and this is hard work.”

That sealed the deal and we never looked back. We networked with other families soon after at our first Ontario Rett Syndrome Conference.

You never know where the path in life will lead you, just take the first step!

The day she woke up sobbing, I knew AAC was worth it.

Fast forward in time to twelve year old Scarlett. She woke up one morning sobbing uncontrollably.  After checking over her physically and not finding anything wrong, the nurse called me over to investigate why she was so upset. This wasn’t her usual. In fact, she rarely cried and if she did it most often was due to extreme discomfort and pain. This was different. Some emotional trigger was causing the upset. When I asked simple yes/no questions she looked away indicating “no” when asked if something hurt. As soon as we set up her Tobii, this was her answer:

“I used to be able to jump on the trampoline but now I can’t because of epilepsy”

“I have Rett Syndrome”

“I don’t like that”

We prodded further, “Did you have a dream about jumping on the trampoline?” her nurse queried. 

“Yes.”

Of course she’d be upset! She’d had a dream about what she used to be able to do and woke up to the reality she lives with. That IS heartbreaking. Within a minute or two of us validating her feelings and emotions, she began to calm down. And soon after, all was well. Before that, it had been almost twenty minutes of crying, upset and us feeling helpless trying to figure out what was wrong.

And isn’t that what all of us want? To be understood? To have someone sit with us in the really difficult moments and say, “That is awful and I’m right here with you. Tell me about it. I can’t fix it, but I can hold your hand through it. I understand.” 

Name it to tame it

– Dr. Dan Siegel

“Name it to tame it” is a phrase coined by Dr. Dan Siegel professor of psychiatry at UCLA School of Medicine. He posits that if we can name our feelings we can then tame the emotional response and help with regulation. 

“In the same way you hit the brake when you’re driving when you see a yellow light, when you put feelings into words, you seem to be hitting the brakes on your emotional responses. As a result, an individual may feel less angry or less sad. This is ancient wisdom,”  Matthew Lieberman said. “Putting our feelings into words helps us heal better. If a friend is sad and we can get them to talk about it, that probably will make them feel better.”

The same is no less true for our non-verbal population. This is a human need, to be known and understood just as we are. How can I know what my daughter is thinking or feeling unless she has a way to tell me? I do feel very confident as her mother that I do know and can anticipate many of her needs and wants; however I am not “her voice”. I do not speak for her. I have three older children, and even though I know them quite well and can guess when they are “off” or having a bad day, I am not a mind reader. I still get surprised by the things that come out of their mouths! The same is true for my non-speaking daughter. She has the same emotional needs, she just simply has no way to express that with her mouth. 

One day I had organized for my hairdresser to come and cut Scarlett’s hair. Just as she was about to begin, Scarlett used her device to respond to the hairdresser, when asked if she was happy to have her hair cut. “How embarrassing.” she responded. 

I was surprised. 

“Do you want to have your hair cut?” I asked.

“No” she replied.

I was stunned. I hadn’t even given it a second thought to consult her on whether she wanted her hair cut or not. Her smile conveyed so much joy at the finished product of only a slight trim and keeping her hair long. Later we realized, every single other girl in her class had long hair. I would have had no idea, unless Scarlett was given a way to tell me.

About three months after getting her first Tobii at three and a half years old, I suddenly realized she had really started to calm down. Behaviours were subsiding. The biting stopped. The head banging went away. Another facet of access opened up in her life, bringing so much joy and help. Now she will even warn us when a seizure is about to come. She gets an aura and can alert her nurse at school to get her in a private space before it sabotages things. 

If there’s anything I can say I’m really passionate about, it would be AAC.

I am Oprah: “Non-verbal? YOU get a device and YOU over there, YOU get a device and YOU and YOU….”

AAC is hard work.

And, absolutely worth the investment…Just ask my daughter, she can tell you!

If you’re still on the fence or would like to find out more about AAC, continue reading.

More on AAC

Was it a lot of work to do AAC? YOU BET!

Was it worth it? ABSOLUTELY!

What is the cost? Time and money. It depends on where you live and what financial support is available to you. We purchased our first device through a local Wish Fund for around $4,000+ and then six months later bought a used, more robust Tobii for $1,000 off eBay. By the time her turn came up for assessment, she breezed by their tests and was approved for a brand new device government funded to replace the aging one we had. 

I won’t sugar coat things, we’ve had to put a lot of time and energy into learning how to model language and support her. We didn’t just set it up for her and then magically she knew what to do. We also had to gain understanding ourselves before we could teach her. It was an investment we consciously decided to make. On-line courses, social media support groups and connecting with other parents who used the technology were all things we devoted time and funds into. Reaping the rewards of hearing her call me over is something I lack the words to fully convey the sheer joy of. Scarlett conveys her needs and also her love for us ; her cheekiness and sass make us and her friends laugh. She’s almost a teenager and I get told I’m “bossy” as well. The gift of simply being able to say she is sad or loves me is something I don’t take for granted. Last year she wrote a speech with the help of her speech pathologist. She needed a lot of support, but in the end she came up with a wonderful speech on some of her favourite people in her life and why she loved them. 

Below is a small excerpt…

For those who are still on the fence about whether to invest in an AAC device for your child, let me ask you this: What would you want if you were trapped in a body that did not do your bidding with almost no way to communicate? How would you feel if your wishes were never consulted? How frustrated would you be with your loved ones as you tried repeatedly to get out what was bothering you or making you feel happy, sad, or annoyed? Even for the most easy-going child in the world, they still have a need for connection and to be understood. How much more enriched could their life be and you as their caregiver as well? When you can laugh at the same joke? Gain even a smidge more of appreciation of how they see their world? Think what it would be like to be your child for a day.

I cannot promise that AAC has cured every problem in Scarlett’s life. We still deal with intractable epilepsy. There are still times when she is unable to find the exact word or spell out what she wants to tell me or is too exhausted to use her device.

However, she still has the opportunity.

And even with all the complexities and challenges in our lives, I still would invest in her communication needs a thousand times over.  

A child who is non-verbal recently swatted my bum to get my attention. I believe he simply wanted to show me something on the road ahead, but I didn’t really know exactly what he was trying to tell me as he energetically gesticulated. He’s still young and cute. What happens when he’s in middle school and tries that with a teenage girl? I wonder what his life could look like if he had a device to invite connection, “Come here” I imagine a robotic voice calling me. “Look! Bus. See friends.”

The more that your disability changes your ability to act on your world, the more important it becomes that you control the people and the experiences that you’re going to be a part of. The only way to do that is with good communication and with the ability to read and write.”
 – David Koppenhaver

“But Melody, I know what my child wants and needs!”

What happens when you’re not around and your child wants to call a friend over on the playground?

What happens if tragedy takes you away from your child? Are they equipped to manage as best as they can? My daughter will always need full time care; however giving her a way to communicate is a gift that allows her to advocate for herself. She has agency over at least some of her life even when I’m not around.

Communication is a human need. I believe we miss out on so so much when we fail to provide a way for our child to convey a message, no matter what their diagnosis is or limitations. Thankfully, we live in a modern world with modern technology to assist our loved ones. iPads, switches, braille, eye-gaze technology are just some of the amazing options that exist in our world.

But it takes work. 

For the sake of every non-speaking individual, I implore you to consider AAC.

As heartbreaking as it was to hear Scarlett sobbing and then to understand that she’d had a dream remembering what she used to be able to do, I’d rather know and be able to comfort her and give her a way to identify emotions, conveying what she’s feeling, than to sit by and helplessly watch her distress. I am thankful she had a tool to help her cope with a very difficult memory to process and was able to identify the emotions that came with it.

AAC is hard work! It does get easier as time goes on, but the initial learning curve is steep.

And, I believe the rewards are worth the time and investment. 

In Scarlett’s words, when I was explaining that some children who are non-verbal do not have a way to communicate, she asked me “Why not?” Good question. 

If you’re a caregiver to a non-verbal individual and still feel overwhelmed by the thought of starting on your AAC Journey, please know I understand many of the hesitations. I was there too.

Check out any of my supports on my Resources page. Check out the following links to gain more information and insight. For now, just take that first step. Maybe you tried it once in the past, but didn’t have the support you needed at home for on the fly, real-world experience. Perhaps, after reading this you’re ready to give it another shot. Please do! Reach out to your child’s treatment centre for AAC support. Join an AAC Facebook group. Check out Rett University. Ask another parent who supports their child using a device to communicate how they got started. 

Take that first step, you never know where it’ll lead.

“You’re off to Great Places 
Today is your day 
Your Mountain is waiting, 
So get on your way.”

Dr. Seuss