Author: victoriarosenberg

October is AAC Awareness Month! Earlier this month, I shared 5 accounts that go above and beyond when advocating regarding AAC (and all things speech!) from a professional, insightful perspective. Although AAC is something we’ve been learning, exploring, and incorporating into Y’s life for the last five-or-so years, we are still relatively new to this arena. If you’re looking to deepen your understanding of AAC from a foundational standpoint, I encourage you to check out the five accounts linked above, where you’ll find pages filled with guidance, support, and accessible educational information!

I am not a speech therapist. I’m not an expert on all things AAC or how to implement it, or where to even begin. Every individual is different, every journey is unique, and the very ability to access the resources to delve into this varies so much from person to person, therapist to therapist, school to school, city to city, etc.

So what can I offer? Why bother sharing in the first place? Although it may not be from the perspective of someone who uses AAC or a professional, I know what I myself have gained, learning from other parents and caregivers, and the unique position that we have. When it comes to understanding the journey to accessing a device or being a parent/caregiver advocating, learning, and training to support your loved one, I feel that I do have something to add to the conversation.

Where to start? I have SO much to say on this topic that I barely know where to begin. Over the last 5 years, Y has trialed a variety of different types of AAC, both aided (requires a physical tool) and unaided (does not require one). He has worked on sign language, gestures, and body language. He has navigated choice cards, communication boards, and PECs (I have a very love/hate relationship with PECs). Today, he primarily uses the LAMP program on his iPad to communicate. AAC is something that is a part of the fabric of our home and something that our younger children have been exposed to since birth. E has never not known a home filled with PECs or LAMP. To our kids, learning to communicate via different forms of AAC is as common a concept as learning a new language.

When I thought of what I’d most like to share in honour of AAC Awareness Month this year, I decided to focus on one topic. I cannot tell you what it’s like to sit for hours a day learning to navigate AAC from the perspective of my autistic son. I won’t even try to, that is not my place and not my story. My taking the time to practice to use the device and familiarize myself with it after he goes to sleep is not at all the same as his learning to use it to communicate. Having said that, because of our experience, I have learned a few very important things I wish I had known sooner. I hope that by sharing these 5 lessons with you today, it saves you the detours we’ve made along this journey and gives you a little more encouragement and strength as you navigate it all!

First and foremost – Your Child Comes FIRST. I know this is a given – of course your child comes first! But what does that actually mean? For over two and a half years, I advocated to stop PECs and move on to another form of AAC. I had had enough. Y had had enough. There were PECS taped to every surface of our home and rather than use them to communicate, he’d rip them from the wall and match them. He’d hand us any PEC and stare at us expecting what we’d come to understand as water or a snack while we stared down at a PEC of a pillow. We carried a binder with us everywhere and then he’d suddenly start eating a new food and we didn’t have a PEC he could use to communicate that to us and it would take days to get it made and added to his book, at which point he had already often lost interest. I would spend hours upon hours photographing, re-sizing, printing, and preparing PECs for him that would be destroyed in a day. Listen, I know there’s a value to the system. He did come to use them to communicate. But we spent over two years on this and all along the way I know he was telling me that this just wasn’t for him. And I would take that certainty, walk into meetings or send off emails, and always be told to give it another month. To try a different size or format, or to even take a break from it all! Your child comes first! I wish I had been stronger and just said no. I wish I had demanded an alternative rather than continue to stress him out when he was so clearly telling me that this wasn’t working. When the world shut down in March 2020, I got a phone call that Y had finally come off of the waitlist for an AAC program we had registered for, ages before. I sincerely feel that this could not have been timed better and that it happened when it was supposed to happen. At home, with only my husband and I and one incredible IT, we started to implement a trial program. There was no school, no one else to navigate the day-by-day, and the four of us – myself and my husband, the IT, and Y, together with a team from the agency, embarked on LAMP. When I contacted his school about it again, I was told maybe he wasn’t ready for it. Why LAMP? They weren’t familiar with it and they suggested a different program that they were familiar with, one that other classmates used. Your child comes first!! Y was responding beautifully to LAMP and that’s what we stuck with. Not only did he successfully complete the trial and receive a device of his own, over a year later, while his skills are still emerging, he IS confidently using it to communicate.

This leads me to my next point – Find Your Team! I didn’t want to leave our original team. Despite the stress and constant need to advocate, I didn’t want to move Y from a place he was familiar and comfortable with, and where there were people who genuinely did care for him and had his best interests at heart. Eventually, we were left with no choice, and while I felt shattered, the most incredible thing happened. Pieces started to fall together so seamlessly. I couldn’t bring myself to tell anyone because it seemed so absolutely surreal. After our first intake meeting with our new team, I exited the zoom meeting and broke down sobbing. I turned to M and we realized that not once during the entire meeting did we have to even advocate. When I went in person to see the school and meet the staff, I brought along LAMP expecting to have to convince them to give it a shot. Not only did they excitedly embrace it, but not once did they ask if we’d consider anything else. They have worked non-stop to learn and implement and support Y with it, never once saying anything remotely negative about it. The speech therapist he works with is absolutely incredible. She is kind and patient, knowledgeable, and so incredibly sensitive. She has included us in every step and has immeasurably renewed my trust and confidence. Y loves her and lights up at the mention of her name, and honestly that’s saying it all! If you’re struggling with your team, you can find a new one. It’s not easy, it’s actually really hard and painful, and you’ll question yourself a million times, but it is not only worth it, it’s necessary. What works for one person, may not work for another, but when you find the right fit, it is absolutely life-changing. 

In my experience advocating for Y, I’ve heard a lot of really diminishing comments from professionals. That implementing certain programs would be, “too abstract.” That I needed to be logical and reasonable. That I needed to just trust the professionals and step back. It wasn’t until we met our new team that I was introduced to the concept of “presuming competence.” This is a strength-based approach, where you assume that the individual is capable of learning, thinking, and understanding. Whereas I was once told that including items associated with Shabbos in his matching program was too abstract for him, the whole framework changed to – he knows what these items are, he can match them. Years ago, we were told previous head staff had attempted AAC with him, but his point wasn’t strong enough, he would get frustrated with the device, and he didn’t have the strength to hit the correct command. Not once did anyone mention a screen guard. It was all about what he couldn’t do. As soon as he had the right tools, he showed us in three weeks that he could use this device beautifully and again, a year later he continues to. I wish I had started out this journey from a strengths-based angle, rather than hearing that his point was off and feeling like this wasn’t going to be accessible to him after all.

Another important point – You Don’t Need To Master Anything To Move To A Different Format!!! I was always led to believe that before considering AAC he would have to “master PECs” and then we could start that conversation! Absolutely not! I know now that there are NO prerequisites to trying out a device!  I try really hard not to fixate on the amount of stress, heartache, and time we could have saved had we known that. Everything happened when and how it was supposed to, but please do not feel that you/your child needs to prove themselves in order to be able to try this out! If a trial fails, try again, try a different format, find what works for your child, but do not feel like you need to master unaided AAC before moving to any form of aided AAC!!

Finally, and this is something that as a caregiver/parent I am asked most frequently – no, AAC will not prevent speech from emerging. In fact, speech isn’t even the goal! The goal is to effectively communicate! This is a much more nuanced/knowledge-based point, and I’d encourage you to check out professional AAC accounts for more information, but it was a point I felt needed to be said!

I hope that wherever you are in your journey, you are met with respect, sensitivity, and the presumption of competence. I hope that you feel confident in your advocacy and that breakthroughs and good days vastly outnumber the harder ones. I hope that communication is always effective and that it leads to growth and confidence, independence, and an ability to speak up for oneself and be heard, regardless of how!