Heather Roach, AAC Experience

Every form of AAC matters. Paper-based systems, core boards, PODD, communication books, alphabet boards, eye gaze frames, partner-assisted scanning, sign, gestures, vocalizations, facial expressions, AAC apps, and speech generating devices. Non-electronic and electronic. The goal was never compliance. It’s autonomous communication: saying what you want, to who you want, when you want. 🎯

Solo loading and unloading drop-off and pickup. Getting her and the wheelchair in and out of the car by myself makes me feel like a total badass, but I definitely won’t hate it when we have an accessible van.

I finally found the time connect the head array to the Blue2 FT Bluetooth switch! AbleNet, Inc’s support page made it super easy to figure out, and knowing our school team is so excited to try it was a great motivator too. 🙌

You could absolutely do this with a single switch, but our goal has been to use the head array. It mounts right onto the back of her wheelchair headrest, so it’s always in position and ready to go. The ultimate goal is for her to be able to drive a power wheelchair, but for now she can turn pages and control apps like music and YouTube. I can also create “switch recipes” for all kinds of cause and effect activities. And last benefit is that it can give her a small break from eye-gaze which is way more fatiguing than many people realize.

I love technology!!! 💙

For a lot of disability parents, the hard days aren’t because of the disability itself. They’re because of the equipment, equipment that changes lives for the better and that we’re genuinely grateful for. But the upkeep is real, and it’s rarely talked about.

It’s the feeding tube alarm with no flow in, no flow out, the sound that strikes fear in the hearts of disability parents everywhere. (Love you, Infinity pump, but can we get together and pick a different sound already?)

It’s the wheelchair upkeep, the AAC mounting options, arm braces, AFOs, safety beds, insurance, adaptive utensils, drinking solutions, therapies, school, IEPs. On and on and on.
Most of us would do this every single day, without question, for our kids. But it wears on you in ways people don’t always see.

If you’re carrying this too, I see you. And school teams, when a family seems stretched thin, the equipment may have already had a rough morning. A little grace goes a long way.

So many tabs open. Be kind to disability parents. We’re tired in a way that’s hard to explain. 💛

What piece of equipment tests your patience the most? 👇

Back to school success with AAC: Use a Daily Communication Log.

Using a daily communication log is a game changer! This year we moved it to Google Forms (care log, learning log, and an AAC messages log), all compiling into one shared spreadsheet the whole team can access. Everything is also linked on one site, so nobody has to go hunting for it.

We still keep a paper copy for our daughter’s aide, since it’s sometimes easier for her to jot notes during the day.

It’s so great to be able to spend time talking with our daughter about her day, instead of trying to piece it together. Also a huge help in supporting her academics!

Back to school success with AAC: Use a Communication Passport.

Use a Communication passport, a quick reference so anyone working with her (subs, specials teachers, new team members) can get up to speed fast. This is great to keep extras in the car because you can hand it out to new doctors, therapists or even family members. It gives a safe space to explain some of the things that people might not know or are afraid to ask. Even better if your AAC user can help write it! (This is shortened adaptation of Personal Communication Passports designed by Sally Millar in 1991).

Back to school AAC Success: Hold a team meeting.

Hold a team meeting before the first day if possible, or within the first couple weeks if doable. Everyone hears the plan together instead of piecing it together separately. Questions may come up and that’s totally fine but this gives everyone a baseline. This is especially helpful for new team members and educators who may have never worked with an individual with AAC. As a parent and educator myself, I recognize the learning curve and am always just hopeful for a team willing to work and learn together.

Modeling for a medically complex AAC user can feel daunting. It doesn’t have to be.

I’m a certified PODD trainer, and these ideas work for any AAC user, not just PODD. You don’t have to model every single word in your message.

🚫 Skip the question trap. Instead of asking “how was your weekend,” model a few feelings they might’ve had, fun, boring, or something different. Always offer “something different.” Then auditorily scan outside the book so they can pick.

💬 Model your own weekend in the language they could use to talk about theirs.

Modeling doesn’t have to be perfect. It just has to happen.