So my daughter had her audiologist appointment today. I went into the appointment fully expecting her audiogram to show a slight regression in her hearing loss. We’ve certainly noticed a decrease in her ability to understand spoken language over the last 8-12 months.
Her previous audiogram from 6 months ago had shown a very slight progression (a 5-10 dB difference in most frequencies) from her previous audiograms, which had been pretty consistent since birth. However the audiologist refused to acknowledge it as a progression. At the time she said that one test isn’t enough to show a regression and that 5-10 dB could be just a margin of error of the test. I didn’t really buy it because that change matched up with our observations at home of her mishearing things a little more often and matches up with the genetic family history of progressive loss. But ok, fine, whatever. I could wait another 6 months for a confirmation.
Then today’s appointment showed a similar regression, actually slightly worse (5 dB) than even 6 months ago in a couple of frequencies. At birth and through her first few years, her lower frequency hearing was normal…now it’s also mild to moderate. Her higher frequencies have moved from mild to moderate to pretty solidly in the moderate range.
And yet, her audiologist is still calling her hearing loss “stable” and refusing to acknowledge a regression. Which, on a practical day to day sense, I don’t really care. I know what I’m seeing at home. We’re already signing with her. Etc. So it doesn’t impact our day to day at all other than me knowing that I need to really focus more on ASL than we have been so far.
Where her refusal to acknowledge a regression becomes a problem is in dealing with our school district. The district isn’t on the same page of us. They are fighting our desire to have her attend a Deaf school. They are fighting us on the importance of ASL for her. They continue to insist on considering the impact of progressive hearing loss an “if” thing rather than the “when” thing it really is. And at this point, I feel confident in saying that “when” has really become a “now” thing. And while we know from family history that the progression isn’t likely to happen super fast, it will happen.
We need to be actively considering progression as a factor during her IEP meetings as a “now” problem, not a “we’ll worry about it IF it happens” problem. But without the audiologist labeling it as a progression, the district won’t take us seriously. They don’t know that even seemingly small changes on an audiogram make a big difference in ability to comprehend speech. The speech “banana” as they call it is in the mild to moderate range. It doesn’t take much hearing loss to really eat away at what portions of speech a person can recognize.
Audiologists like this who refuse to acknowledge such a progression do great harm to their patients. They hinder their parents ability to get them the access and supports that they need and deserve. Which in turn can impact the rest of their lives. No, that’s not a melodramatic statement. Our educational experiences are the foundation for the rest of our lives. It’s where we build our knowledge as well as our sense of self. And those earliest years set the foundation for everything that comes afterward. You fall behind, academically or socially, and it’s really hard to dig yourself out of that hole and repair what it does to your own sense of self.
My husband is a perfect example of this. He still to this day at the age of 40 has struggles that are directly related to not receiving the supports he needed and deserved while in school. Don’t get me wrong, he has a decent job, he’s pretty smart, he knows quite a bit about a lot of stuff. But he also isn’t fluent enough in ASL to feel comfortable with interpreters or in a Deaf social gathering. His self confidence is not what it should be due to the struggles he faced…his depression and anxiety started due to his academic and social struggles in school. He views himself as “not smart” and “antisocial” and “socially awkward” when he is really none of those things, he has just internalized the oppression he faced in school and doesn’t realize that what he sees as personal failings are really a result of being failed by the system. He could have gone a lot farther with his education gotten a better job and he shouldn’t have experienced all the bullying and the social/emotional damage that did to him. But his experiences K-12 have definitely held him back from his full success and it didn’t do anything to prepare him for living life as a deaf adult.
The oppression of DHH folks is baked into the system. It comes at all angles. Too many professionals in the field are too focused on making deaf people to be as hearing like as possible instead of valuing them for what skills they do have. Even from the angle of an audiologist who is refusing to acknowledge the data right in front of her. This is why it’s such a challenge for us parents to fight the system and get our kids the access and rights they deserve.