Ashlee Rose:Tell us about yourself
Christina:I’m momma to the sweet Lorelei. I try my best to be the mom she needs me to be,
even though I feel like I fall short (like many other moms feel, I’m sure). My
passion is education, and before I became an early childcare teacher I worked as an
educator in museums. It was always my dream to teach. When I’m not teaching, I
love to create (crafts, baked goods, anything really) and go running. Running is
such an amazing stress reliever for me! My husband is a very goofy guy and the
perfect opposite to me.
Ashlee Rose: How old was your daughter when she was diagnosed with a hearing loss?
Christina:After Lorelei was born she “failed” her hearing tests. The hospital sent us to an
audiologist that continued to test her and told us that her test fails was likely due to fluid
in the ear. He said that with time her hearing would improve. That didn’t seem right to
me, and as the months went on and she did not flinch at loud noises, I sought a second
opinion. She was a year old when we finally got in to see a pediatric audiologist and she
was diagnosed with mild-moderate hearing loss. She also had fluid buildup in her ears
that caused her to hear at a severe hearing loss level.
Ashlee Rose: Was the cause discovered?
Christina:Yes- Lorelei has GJB2 mutations (a gene mutation). My husband and I both have a
recessive gene that can cause hearing loss in our children. Though many people with
this type of mutation do not have progressive hearing loss, Lorelei does. Over the past
year and a half that we have tested her hearing it has gone from mild-moderate to
moderate-severe. It has been getting progressively worse throughout her life.
Ashlee Rose:How did you guys find out about her hearing loss? What were the emotions you and
your husband went through during the time?
Christina: We found out about hear hearing loss when she was born, but because of a bad audiologist,
we didn’t know for sure that she had hearing loss until an ABR at a year old. When the
doctor told me, my first thought was that she would never hear me say “I Love You”. I
wasn’t necessarily sorry for myself, but I was sorry that her life would be harder than most
others. Until we learned that her hearing loss was genetic, I wondered if I had done
something during my pregnancy that caused it. I went through the whole range of emotions,
but I knew that it would be alright. My husband and I hadn’t met anyone that was deaf or
had hearing loss, but we knew that there were resources for us. My husband was much more
pragmatic about Lorelei’s hearing loss. He saw what we needed to do for her and got to
work researching and learning about hearing loss and different communication methods. For
me it was more emotional.
Ashlee Rose:Tell us how you prepare your daughter for audiology appointments and working with her
Christina: Lorelei is only two, so she still doesn’t quite understand when we tell her we’re going to
the doctor. We go every three months, so she is well acquainted with audiology
appointments. We make sure to set the appointment early in the day, long before her nap
time. We have a filling breakfast and pack a lot of snacks, and even a special snack to
give her when she gets a little tired and needs some incentive to behave.
As far as her hearing aids, I am in charge of them and their maintenance. When she was
young it was a struggle to get her to keep them in, but we used (and still use) cords and
clips. I’ve found some really cute ones on Etsy. She loves to choose the clip that she
wants that day. There are also stickers to put on the hearing aids. She loves to pick new
ones based on what she is into at the time. The stickers also help the daycare staff to
know which ear to put the hearing aid in after her nap.
Ashlee Rose:Is she learning to use ASL or oral approach?
Christina: Right now we are working on both ASL and speech. She is so young that her brain is
like a sponge. She is incredibly intelligent and learn extremely quickly. We want to
get sounds in her while we can, but we also want to teach her ASL before she loses
her hearing. She has speech therapy twice a week. Because we are learning ASL
ourselves, we are working hard to surround her with deaf people and others who
know ASL much better than us. This works for us right now, but we know that it can
change any day and that we need to be flexible with her communication preference.
Ashlee Rose: Do you guys do early intervention or therapy to help her connect with the world?
Christina:We did early intervention for a while, but when I went back at work I decided to put
her in daycare and stop early intervention. We got so blessed with her teachers and
the daycare staff. Lorelei’s teacher has a family member that is deaf and uses ASL,
so she knows some words and phrases. Lorelei’s teacher also worked with special
education students and knows to make sure to stick to a routine, talk while facing the
classroom, ensure other noises were at a minimum, etc. The staff also takes the time
to learn commonly used phrases. They not only use them with Lorelei, but teach the
entire class. The program is amazing for Lorelei. She learns so much from others,
even when you think she’s not paying attention. Within the first few weeks, she
came home saying so many more words than we imagined she would. This summer
we are joining a program to help us connect with the Deaf community. I’m excited
for Lorelei to get to play and sign with other children her age.
Ashlee Rose: I see you are selling candles and donating to deaf schools, tell us about it.(Amazing and cute candles!) www.lusterandlore.com
Christina:Yes- I created the business several years ago, but when we learned that Lorelei was
deaf, I knew I wanted to send a portion of the sales to help deaf education. I love that
people buy my candles just so they can donate to deaf education. Not only do they
help a school or organization, but they also get a good smelling candle. Right now
I’m deciding how I want to change my business to create more deaf awareness and
teach more people about the deaf community. If I can inspire one person to learn a
few signs, that is worth all of my time and effort.
Ashlee Rose:Do you have an advice for parents who are raising a deaf /hard of hearing child?
Christina:It’s hard to know what to do when you first hear that your child is deaf or hard of
hearing if you’re a hearing family. My advice is to take it one day at a time and do
what you can. As long as you show love to your little one for who they are, you are
doing great. You can’t learn everything all at once, but all that matters to your little
one is that you try your best and show them love.
Hearing Impaired single mother and teacher aide at a hearing impaired oral preschool program. An author of "Turn The Lights On, I Cant Hear You".