After our daughter, Blakeley, was diagnosed with
permanent hearing loss in June, the tedious task was getting her hearing
aids. I recently wrote in Part 1 about her diagnosis
and how blessed we were by an audiologist to just take me at my word about her
diagnosis and go ahead and 1)allow me to schedule the hearing aids appointment,
2)get her ear molds ordered and 3)order her hearing aids – all without the
diagnosis report from the ENT’s office who did the sedated ABR in June! The ENT’s office took forever to get the
report to the audiologist, and if we had had to wait all that time just to get
the molds and aids ordered, who knows when we would have finally got her aided!
So my husband went with me to all audiology appointments after her
diagnosis, because we were both afraid to ever go alone again. We stopped living in our naïve ignorance and
became very intentional about proactively reading, asking questions, and not
assuming any of the doctors or their offices were just going to tell us what we
needed to know. I went to the public
library and looked up every book they had on hearing loss. One book that I absolutely loved and read
cover to cover (some others I realized after starting them, that they were
off-topic or too topic-specific, and didn’t finish them), was Shouting Won’t
Help: Why I and 50 Other Million Americans
Can’t Hear You. My eyes were opened
to the world of limited hearing, hearing aids, and the challenge of living in a
hearing world. There are millions, literally, of similar stories to this author’s,
and it was both challenging and encouraging to read an adult’s point of view,
since my daughter’s world is quite small and I was at a loss as a hearing
person on how to prepare her for the big rest of the world.
Even more challenging is that Blakeley’s diagnosis is the
opposite of what most people with a hearing disability have. Most people with hearing loss/deaf gain,
especially those who are Hard of Hearing (having partial hearing, but not mostly
or completely deaf), have loss or limited hearing in high tones/pitches while
still hearing a lot of low tones.
Blakeley’s audiograms show that she has mild loss in high pitches and
moderate loss in low pitches. This makes
hearing way different for her. All sounds
are made of mixed tones, especially voices.
Low tones are what give sounds their richness, fullness. I noticed after her diagnosis Blakeley only
turned or jumped at loud low tones, when she would easily turn toward softer high
sounds. We started talking to her in high
pitched voices (as much as we could) or very closely to her ears. We noticed she slept hard during storms, door
slams, etc… and really the only time someone’s voice woke her up from sleep was
my son’s 4-year-old high pitch voice. The
first sounds she made were Ds, Ts, Ks, Gs, which are higher sounds than the usual
sounds most kids start with Ms, Ns, and Bs.
In an interesting article I read about the Bizarre World of Reverse Slope Hearing Loss,
the writer had an extreme case of reverse slope hearing loss, and he could only
hear the pluck of the pick on a guitar string rather than the chords being
played by the same strum of the guitar.
That example has very much stayed with me, and it has made we wonder every
day just what the world sounds like to my daughter. Sure, she hears, but what exactly does she
hear?
We were told by our amazing audiologist about several
programs that are free to families with children who have hearing loss, and she
did all the calling and paperwork for us to get started in these programs. We live in Oklahoma, so one program here is
called SoonerStart. We did introductory
paperwork and meetings similar to IEPs done in schools. The woman who meets with us from the program
has to cover a vast area and many families, but on the occasions we have met
she has given me several resources regarding sign language and helped me
evaluate if Blakeley is delayed in any milestones of development. She also encouraged me to read 10 books a day
to Blakeley once she had her hearing aids for language bombardment, which is
difficult to do because Blakeley gets very angry if you go past the first page
of any book! Ha!
We were also told of a non-profit called Hearts for
Hearing. Originally and currently based
out of Oklahoma City, but there is a Tulsa office. We were told that they would purchase Blakeley’s
hearing aids for her and provide any audiology and speech therapy services we
need until Blakeley is 3 years old. We
were also quoted that if we went through the audiology office we had been
visiting, the expected portion for us to pay would be somewhere between $300
and $800. We were also initially told
that if we went through Hearts for Hearing to attain hearing aids for free, we would
have to use their audiologist and could only have appointments on Mondays. I was worried that even though it would definitely
help our finances, but the idea of such limitations of availability of appointments
and with the quote through our private insurance being so little, we went ahead
and ordered her hearing aids through the audiologist that we had already fallen
in love with and felt so taken care of by initially at the Scholl Center.
I had never seen a child with hearing aids, even as a public
school teacher for a decade. I was
nervous about what color to choose for Blakeley. At first I thought we should get the skin
tone color so they were less noticeable, especially since the sweet baby has
barely any hair! I pictured these big plastic hook-like shapes over the tops of
her ears, and I just wasn’t sure I could get used to such a thing. The thing with hearing aids is that you only
replace them every 3-5 years, because insurance won’t pay for new ones any sooner. Making that decision for her – the accessories
she would wear at all waking hours until she was 5 years old - was a lot of
pressure for me. My oldest daughter’s
favorite color changed every month or so once she learned her colors, so I was
afraid of picking an actual color for Blakeley.
But I also wondered if getting a skin tone implied that I was ashamed of
her hearing aids, which perhaps I was a little.
Not ashamed for me, but nervous for how she would perceive herself – how
others would perceive her. I finally realized,
though, that Blakeley will think about them however we model for her to think
about them. If we consider it normal,
and maybe even fun, then so will she. And
when my oldest daughter had to pick out glasses, she easily and confidently
picked out bright pink frames… how was this any different?! A friend of mine also explained to me that
sometimes when her daughter who wears hearing aids is angry or frustrated, she
takes them off and throws them, often during car rides. I imagined me upside down in my mini van
trying to find neutral colored hearing aids at least once a week and immediately
let that be the deciding factor – we would order the brightest pink pair available! For molds, there are many colors with things
you have have melted in – glitter, shapes, tie-died colors, etc. I figured if she was going to wear them every
day until Kindergarten, then I should have fun with it!
While we waited for the hearing aids to come in, I went
ahead and ordered 2 pairs of Ear Suspenders for Blakeley to begin wearing and
getting used to them. I am a
headband/bow-obsessed mama, so Blakeley was used to always wearing an accessory
on her head, but not elastic ones and definitely not with rubber over the
ears. So for several weeks before she
was aided, I had her wear her Ear Suspenders every day.
On August 7th, a month and a half after she was
diagnosed, we went in to have her hearing aids put on for the first time. I took her picture at the Wendy’s we ate
lunch at right before the appointment, because for some reason I felt something
about my daughter was ending. I was so
excited but also sad. Excited that her
world would open up to so many more sounds!
Sad, because her world as she knew it was going to change; she had no
idea that what she knew was flawed, limited.
And it wasn’t her fault that she couldn’t just be in the world as she
is. In just a few moments she would know
differently, and she would never be able to go back to being ignorant of the
fact that she was not whole on her own.
 |
| At Wendy's before the hearing aids appointment! |
There was an entire kit that came with the hearing aids, and
the audiologist went over all of it with us...
What to do if they got wet. Where
to check to make sure they weren’t clogged with dirt or wax. How to check batteries. Where to order batteries. How to put the batteries in and out. How to know if she needed new molds. When to have them on, when to take them off and
to remember to turn them off…
And then Kyle held her as the audiologist put them on her for
the first time. She was crying because she
didn’t like being messed with, and then as soon as one was in, she went silent. Stunned silence. The room was not noisy, but I thought of the
noises she hadn’t been hearing before – the air conditioning, our two older
children quietly playing in the corner… in that moment I was too happy for her
to cry. And I felt nothing but gratitude
for this doctor who seemed to have rescued me from fear and ignorance.
To view this video: https://www.facebook.com/keisha.mackenzie/videos/10156691584946047/
I am ashamed to admit that the only moment I cried was when
I saw the bill. I was grateful that I
did not owe the original amount of $9,000 for the pair of hearing aids, but I
was shocked and not financially prepared for the $1,500 part that we were
responsible for. The $300-$800 quote we
were originally given was already a bizarre range, but I was prepared for
that. $1,500 was quite different! And we were told if we did not pay the $1500
in full, we could not leave with the hearing aids that day. There is no payment plan option, and I just
could not leave them there. After seeing
her response to hearing everything around her, I just couldn’t leave them behind. So we left that day with only a few cents left
in the bank, and I was sweating all the way home thinking about how we were
going to make it through the next week with the groceries we had in the house
and the gas we had in the cars.
We were very blessed to be helped by our parents once they
heard that the bill turned out to be twice the higher end of the original
quote, and even though I hate accepting financial help, and even just speaking
about it makes me stressed, I was overwhelmingly grateful and unable to put
into words how loved I felt in seeing our family be not only void of shame over
our daughter’s disability, but wanting to help her the same way we want to help
her.
The first two days of her wearing her hearing aids were
EXHAUSTING! It took me forever, it
seemed, to get them in just right where there wasn’t a screeching feedback
where air was getting in… and then a minute later, Blakeley would pull them
off. So I’d put them back on, and she’d
pull them off. I was sweating from
having to hold her with my legs so I could twist and pull and push with my hands…
and then I noticed after a day and a half of me being just as stubborn as she
is, she took them off less with longer times of wearing them in between. By the 3rd and 4th day,
she barely touched them!
I noticed after being aided, Blakeley would bend over as I
carried her on my hip and watch my feet on the carpet in the morning; she had never
done that before. She scream-cried when
I turned on the vacuum, which had never bothered her before. She screamed less and less than she had prior
to being aided; usually she squalled for no reason – happy, sad, mad – just the
most shrill shriek that makes your eyes flutter and body tense. She did that less and less, and we were
thankful! We also noticed that people
defended her when we got onto her when she did scream, and no one ever was
upset when she would cry in public. Old
ladies would tell me, “Oh, you leave that sweet baby alone; she just wants to
hear herself.” I have often joked that
all children should wear hearing aids so that no one will judge a mother when
her baby is inconsolable in public! Ha! It has been so refreshing to see how sweet people
are, and how helpful our village of family and friends have been!
And, of course, now it is very normal for me to see hearing aids on a small child and not think twice about it. We see other babies, toddlers, school-aged children, and teens in the waiting rooms and in the pictures on the walls of all our appointments. We have even met two other children while out and about who were wearing hearing aids, and it was fun to have an instant bond with strangers!
And we began all the testing suggested to make sure her ears
were the only thing affected by the nerve damage causing her hearing loss. Blood was drawn as St Francis in Tulsa, an ophthalmology
appointment in Owasso, a kidney ultrasound in Muskogee, and back to Tulsa again
for an EKG, all the while going to Tulsa for audiology appointments and her
regular doctor back home to hear the results of each test. And on top of that, we began an ASL class and
Auditory Verbal Therapy services, but those are a story all on their own! Be looking for Parts 3 and 4 (I think that
will be all?)…
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