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This will probably be the shortest post I ever share on this subject.
As promised, I am going to document our journey with communication. For Aidan I will be sharing how it’s going for the kid. Me, I will share how well I am doing as a Communication Partner (or CP). Right now, I am doing a lot of learning and researching. I am traveling two different communication paths right now, alongside Aidan. The communication app Proloquo2Go (or P2Go) and Spelling to Communicate (S2C). I worry that Aidan has reached his tolerance level with P2Go as well as worrying about the ceiling he will inevitably hit even if he were 100 percent proficient with it’s use. By this, I mean, there’s only so much one can convey with images. This isn’t a knock to those who use an AAC app and/or device, this is something that is worrying to ME as it pertains to my son. Also, there were so many things I learned during my “Days with No Words” (available for preorder now, see what I did there?) that I couldn’t actually communicate and honestly, it was frustrating.
However, communication with an app is far better than having no communication at all, so we are traveling both paths and see what happens.
Because his P2Go and S2C are different in so many ways, I won’t share both journeys in one post like this again. I don’t know that there will be any videos of him shared in this space, just as there weren’t many shared elsewhere. He is still not all that comfortable with the camera, but he is opening up more. Me, on the other hand will be sharing some videos from time to time.
I don’t know how many of you have Nonspeakers or minimal speakers in your life. These shares might not be all that important to you. But if you do know someone who these posts might be good for, send them this way or share these posts with them.
Most of these posts I will put behind a paywall but I will reveal a lot of content before the wall goes up. This is for a few reasons:
it will be a lot of labor (labor of love) to put these posts together, in addition to actually walking this path with my son, which is already labor intensive for the both of us, but especially him. I am researching, joining programs, learning, taking notes, speaking with other nonspeaking families, and more.
given that much of the those who are trained in S2C are not SLPs, OTs, etc. (well, most of them aren’t), this isn’t something that is covered by insurance. Most of the consultations, the courses, webinars, lessons, and materials I am paying for out of pocket. Soon, I would like to visit an in-person camp for Aidan but that can cost hundreds and I am saving for one of those trips.
iPad repair. we have AppleCare on most of our devices, save for one. And that one is one of Aidan’s ipads (he has a mini and a regular sized one). Repairs can be costly should he ever need them. Even with AppleCare, there are costs associated. Plus, it only covers a set amount of damages per year. Then you gotta pay more. So, paid subscribers here help cover the cost of damages.
Spelling to Communicate.
I just wrapped up Week One of “Accessible Academics” which is a 10-week course gifted to me by the lovely folks at Reach Every Voice. It is self-paced and teaches how to adapt learning material for those who are nonspeaking, minimally speaking and who are learning spelling or who already spell to communicate. It talks about apraxia which is a neurological disorder characterized by the inability to perform familiar movements on command, even though the command is understood and there is a willingness to perform the movement. The desire and capacity to move are there but the person cannot execute the act. Or something like Gregory Tino says, “the body is unruly.” Meaning there’s so much they want to do but cannot get their body to do it.
This seven letter word has changed so much of how I see my son and Nonspeakers. It brought both understanding and heartache. I see him more now, but that window opening brought a lot of cold truth and harsh winds. The sadness I feel that he is trying to get his body to do what he wants it to but cannot is a pain I do not wish on no parent. The years I thought he just didn’t want to listen. And while I am much better than I was then, the version of me you see today didn’t appear until 4 or 5 years ago. My son is 10. He spent a decade with a Mama who didn’t know any better.
This course also talks about presuming competence and how much it does NOT mean the presumption of knowledge. That was key for me. I kinda felt like many would take this to mean that I felt my son was a genius locked within himself and I didn’t ever think that, but I do think him capable of learning. What is foundational to Spelling is that the Apraxic body needs to learn to control itself and then it can point to letters and type. It assumes the knowledge and/or capacity for learning is there, but the body won’t allow itself to execute what the mind wants it to. What is learned in these types of programs is how to control the unruly body as well as giving accessible education based on interests and providing instruction in a way that is age-appropriate and not the repetition of drills and material that is years younger than what they actually are.
We are doing a lot of motor skills building activities with Aidan. Helping him to get better control of his body. I am hopeful that this is something that will work for him. Reach Every Voice isn’t the only resource I pull from on this journey. I will share more along the way, but I just wrapped up week 1 of their program so it is fresh on my mind. Here is the link to sign up for “Accessible Academics” or to search their site for consultations, lessons, materials, past video sessions, and more.
AAC and P2Go.
What frustrated me the most about my son’s time in Speech and school was that by the time they actually agreed with me that he was more than capable of having an iPad with an AAC app, they didn’t actually help train us on how to us it. I spent time on my own trying to figure it out. Life would get in the way, or I felt I couldn’t fully grasp learning it on my own from what I saw and read, so I honestly gave up and tried to do it on my own. What changed from then and now is: my motivation and AssistiveWare (the company P2Go belongs to) has a really good coaching section on their site now. And there are also many resources available now to help teach and guide parents on their AAC journeys with their child. I didn’t have this all those years ago.
AssistiveWare has a section on their site entitled, “Learn AAC” that I have been stalking as of late and bookmarking to read when the kids finally lay it down at night. You can check it out here: https://www.assistiveware.com/learn-aac
The material on this page are all articles to be read, no videos, but there are links contained within many of them to resources that can be downloaded and printed to help.
The online training with AssistiveWare might looked geared towards SLPs, but parents can take advantage of their videos as well. There’s a support section within the app as well with really good information too. And I am unfamiliar with the Proloquo app (which is not the same as the P2Go app) but they have an accompanying parent app that will help them navigate AAC and that particular app. The training includes live webinars, videos, and more. Some are free and others you pay for. You can check that out here: https://www.assistiveware.com/on-demand-aac-training-videos
In conclusion…
first it’s wild I thought that this would be my shortest post on communication. I shudder to think how long the next ones will be. I wanted to share a bit more information to help those get started a little. I do want to say that I don’t know a thing about other communication apps, like TouchChat, etc. Anything I share about AAC apps will be mostly about Aidan’s chosen app P2Go. He tried others in the past but didn’t care for them. And since I cannot speak on other apps, I won’t even try. I do hope that a lot of what I share can be generalized to other apps, however. But I know some of it won’t. Just wanted to put that out there.
These will be straightforward as I can possibly make them. There won’t be emphasis on pretty language and storytelling, nothing that I am kinda known for. I just want to share our journey. What’s working, what isn’t, give advice, seek some advice, etc. I want to share as much as the kid will allow me to share. And more than I have shared on other platforms mostly because they are so open to everyone and restricting character limits.
I know this was a lot and probably inconsequential to those of you who do not have loved ones this will impact, but I do hope that you check out some of these posts from time to time because there is one thing that I have learned over the years advocating, is that this world does not give Nonspeakers a chance. They don’t care for them, they don’t listen to them. They are not seen, heard, nor safe within the Autistic community as well. Perhaps learning more about them and the journey it takes to go from no reliable form of communication to someone who is open with their communication can inspire you to want to fight more for them and the things they need and require. I hope that it can inspire you to amplify their voices more.
I hope that sharing our journey will help you to see those like Aidan more.
Thank you so much for sharing this journey! My son is 7 and mostly non-speaking. We have had a device for 2 years (an Accent with Unity84) and are still learning. I love hearing about what you have done to increase communication together.
I have also done 2 weeks of the Reach Every Voice course. I couldn't remember who recommended it, but it must have been you.
All the information you share is so important and so helpful. My youngest is a nonspeaker, and I've asked professionals about apraxia. They've never been able to give me much, if any information, but after reading a book by Gregory Tino, I knew I needed to push harder and ask more questions. I've been researching what I can over the last couple years. There's information out there but it's work to find it. Thank you so much for all the resources you share.