we used to be fully verbal. Talking as much and as often as we wanted. and sure we got tired, but talking was only hard the same way all things are hard when you are tired. We know we talked a lot. Possibly to to point where we may have been hyper verbal as a child. Or maybe we were just louder than all the other kids so to other it seemed like every word was worth more. If we had verbal shutdowns we do not remember them. Maybe we did, and languages struggles are locked away with memories of the meltdowns we know we had.
It was in high school that we first remember having a verbal shutdown. We think after a meltdown though we have blocked that out if it was one.
We took a notebook with us and wrote what we wanted to say. This was our first time using AAC. We had the words for our experience then. Some words at least. Though they may have been the wrong ones.
We are not sure if the next memory is part of the same one or a different one but we remember downloading a text to speech app to use. Using it and our family acting put off by it. We were driving to our uncles and aunts place. Our family asked if we were going to use it around them and where clearly not impressed. Our words come back before we arrived
And that was that. Verbal but loosing words sometimes. Struggling to articulate sometimes. But only infrequent speech loss. Once a month at most.
And we didn’t have access to AAC. We had text to speech apps on our phone but we didn’t use them. Because writing worked fine. Forcing ourself to speak worked fine.
Language was ours and we used it how we wanted.
And then we went to china. And it was wonderful and amazing and so different and so much change. And after a music performance (for we were there to perform music) our words slipped out of our grasp. and this was fine. this has happened before. We wrote on paper like before but our hand was shaking and the writing was hard to read.
So we went around research different AAC. for when it happened again.
And it did. Twice more. And that was fine because it made sense why it had happened. and we know things would return to normal once we come home.
And for the most part they did.
Nothing much changed for a good while. And we worked on our AAC for when verbal shutdowns happened.
It was slow. The loss of our words. Creeping in at the edges. More verbal shutdowns, sure. But also struggling to voice thoughts. Speaking but as not as much as normal. It grew. Until we rarely have a day where talking is easy all the time. until we rarely have a day where we do not wish we could use AAC because talking is a waste of our precious energy.
We do not know if our talking will return to normal. We do not know if it will just get worse. Right now we can get though almost all of school talking fine. Right now our talking switches off mostly in safe environments. But it has started showing up in places that I thought it would not. Maybe it is just the product of not having more than 3 week off school in almost 2 years. Maybe it is fine. Maybe it will come back. Maybe it will stay like this (but “this” hasn’t been stable so we do not know what “this” is). Maybe we will lose more words. And we don’t know. And the not knowing is scary.
This doesn’t have a nice conclusion. Because we are not at the end. Because this is still very new and there is change happening and we have to wait and see. We will keep using AAC though. and hopefully soon we will be able to use it whenever we need and want to. Not just sometimes. Around specific people.
no daily words today because AAC is making us really frustrated. We tried using CoughDrop but then our words delete and then we try using Weavechat and we have a new layout but it is not right and has not saved how we want it and we are not happy and just want to sleep
we have an exam today and think that after we will not be able to talk, both because exam takes words and also because we often can't talk on Friday afternoons. We will see.
we've almost finished our communication cards. We're going to laminate them at lunch. And then whole punch them and add them to a ring. We managed to not export some so there are still ones that aren't made but we wrote/drew them on the back of the some they were meant to pair with.
