A note on Kiku's deafblindness.
Kiku has hearing and sight but both are unreliable. Kiku is still figuring out what is hard, what helps, and what this means for Kiku. Kiku grew up thinking Kiku was sighted and hearing and knowing now, that that isn't true. That Kiku is blind and is deaf, are big. Very big and a lot to process.
When Kiku first started really questioning if Kiku was actually blind, really actually considering the possibility that that is true, a very nice lady whose son is deafblind due to CVI and CAPD reached out to Kiku, and listened to Kiku, and confirmed that Kiku's experiences sound like CVI, and that Kiku very well might be deafblind based on Kiku's experiences and even more important, she talked about the trauma that others with CVI and CAPD/Cortical Deafness have experienced, by growing up deafblind and not even knowing it. At first Kiku thought, Kiku doesn't have trauma from that... But Kiku does... All the things that weren't believed, or understand, or listened to. Glossed over. Explained away. Every time someone said: Just pay more attention, just listen, it's right there just look, we called you five times why didn't you answer.
Kiku does have trauma from growing up deafblind and not knowing it. Kiku is so glad that Kiku knows now. Glad that Kiku can accommodate self now. Can learn to rely on things that work better than Kiku's hearing and sight, because they are not reliable. Familiar things are sometimes easier, familiar things can be easier to see, familiar sounds or speech can be easier to identify, although not always easier to understand. Especially speech. Most of the time speech sounds like gibberish. Sounds are hard to identify, can't always tell where sounds come from. Unfamiliar things are worse. Unfamiliar places are a swirl of confusing color, unfamiliar sounds make no sense. And sometimes especially when stresed, overwhelmed, tired, or similar even the familiar is lost in a swirl of colors or sounds. Too many things too many sounds. Is that rain or something else? Someone talking or a sound on the TV. A passing car or something else. The more sounds the harder it is to tell. And if hearing can't see well, and if seeing, actually seeing processing what looking at, can't hear. Will be looking at something and realise halfway through someone talking that they talking and Kiku didn't hear half of it.
But Kiku is learning things to help.
Take break to focus listen, so hear better. Still hard. Still hear gibberish often.
Take break from use sight. Use screenreader. Use braille to make note for self.
Rely on tools that help and loved ones.
Learn more, always learn.
Remember what used to do to help (hand trailing, spend time by self in familiar place, dark, limit sensory input. Block background noise to focus using sight. Block visual distraction to help hear somewhat better)
And things want to learn/have in future to help.
This post is mostly for self. Just dumping it all out to help process.
Will bio family accept all this... Probably not. They didn't see Kiku's disabilities the first time. But also they not the ones matter, not really. Ones that do, chosen family. The ones who accept Kiku for Kiku, disabilities and all. And are learning to help Kiku while Kiku learn to help self.
Also if Kiku has any deaf, blind, or deafblind followers who have anything they want to share, whether that is their own stories, resources, art, ect. That would be great. Kiku probably should have had all this a long time ago, (community and awareness of self) but Kiku is glad do now.
Thank to anyone who reads this.
