it seems that I've had about thirty conversations in the last month about shilo's hearing, and our choice to not use hearing aids (for now), as well as using ASL as her first language. some of the conversation has been because we had another sedated abr, and there was a new audiologist who delivered the results. some was a result of going to a conference for parents of children who are deaf or hard of hearing. and, some are because shilo will be three in a few weeks, so she ages out of early intervention and into the school system.
so here's some more information for those who are interested. first of all, there is a whole community that some know exist, and some don't. it's the deaf community. in this community, being deaf or hard of hearing is not seen as something that needs fixed. the adults in this community are just like the adults in any other community. some went to college. most of them have jobs. they raise their children, go to soccer games, and have hobbies. they might use apps on their phones to help make doctors appointments or to help with ordering in a restaurant. but, they are perfectly capable of functioning in the world, just like everyone else. some of them choose to use hearing aids for themselves or children. some don't.
most hearing parents who find out that their child is deaf or hard of hearing choose to use hearing aids, have cochlear implants, and to work hard to make certain their child speaks. the view is often that being deaf or hard or hearing is something that needs fixed. for people who are hearing, it's hard to imagine functioning in a world where hearing, and speaking are the norm, and not having those things.
our personal view lines up more with the deaf community. while shilo has some hearing, and we have hearing aids for her, she doesn't like to wear them. matter of fact, without them on, if their is a loud noise, she puts both of her hands on her head and makes a whiny noise, or sometimes cries. she is completely overwhelmed by loud noises. hearing aids just amplify this. so for her, her hearing aids cause her to feel overwhelmed. she stops playing or interacting. most of the professionals we have worked with have pushed us to have her wear them as much as possible so she will get used to them. we have followed her lead and decided that if they are overwhelming for her, we aren't using them for now. some day, she might change her mind.
also, while this isn't always true, because people with Down syndrome are individuals, and there is no one thing that describes everyone with Ds, often times, people with Ds can be hard to understand. they have low muscle tone, and it's harder for them to move their mouth and tongue in the ways needed. people who are deaf or hard of hearing also, often times, have trouble with speech because they don't hear certain sounds. for us, this meant that it was possible that shilo would have extremely hard to understand speech as a result of her Down syndrome and being hard of hearing. our goal for her was communication. we wanted her to be able to communicate her wants and needs easily. so it made sense to us to have ASL be her first language.
at this point, we are not working on speech with her. I don't foresee it being something we do in the future, either. we still talk to her while we are signing. she still hears music, and watches signing time that is both signing, speaking, and music. we are not preventing her from learning oral language. however, we are also not willing to spend hours of therapy every week trying to make her imitate sounds. i'd much rather we use that time for motor skills.
so at this point, shilo's communication is almost all through ASL. (she verbally says, mama, papa, go, and Abigail sometimes. however, she signs those things more often than saying them). she actually has a vocabulary on par with that of other three year olds, and uses two and three word sentences. she uses feeling words, and blows us away all the time by signing something we had no idea she knew. just like all toddlers, she has some words that are the same, and we have to figure out in context what she is saying.
we know that everyone makes the choice for their child that they think is best. I am not saying that people who choose to use hearing aids, implants, and/or oral language are wrong. but, for whatever reason, every conversation we have about hearing, language, and the choices we have made based on what we are doing for Shilo, I have to defend it.
here's our defense: we love our daughter. we are the ones who spend more time with her than anyone else out there. we know her. we have tried to do what is best based on what we have observed from her. it's working for her, and our family. i'm going to assume that the majority of people I meet are doing the same, whether it has to do with hearing, schooling, or the millions of other things, we, as parents, have to make decisions about. if you could make the same assumption about us, we would appreciate it.