Friday night after preschool graduation every year is my favorite.It is an emotional day saying goodbyes to my precious preschoolers who are ready for Kindergarten. Then when I come home, it is a relief feeling knowing summer break begins and I am available to be with my daughter. She usually gets out of school a few weeks before I get out. We were off to have dinner and a movie to see Aladdin. Not knowing this was not going to be my favorite Friday night after all.
The movie, Aladdin started and all of sudden, a lady was yelling at me that startled three of us. She was literally yelling at me about the caption box. I yelled back “It’s closed caption!”. We continued to watch the movie. My heart was torn. I felt not comfortable. I felt anxious knowing she was still behind me. Do I move to another seat? Do I stay? I prayed for God to give me the strength to handle it in a graceful style manner and what to do. My daughter is here and I’m her role model. Do I speak up or not?During the movie, Jasmine sang the song “Speechless”. When I read the words from the caption box, this hits home. Here is a part of the song.
Here comes a wave meant to wash me away / A tide that is taking me under / Swallowing sand, left with nothing to say / My voice drowned out in the thunder / But I won’t cry and I won’t start to crumble / Whenever they try to shut me or cut me down
I won’t be silenced / You can’t keep me quiet / Won’t tremble when you try it / All I know is I won’t go speechless / 'Cause I’ll breathe / When they try to suffocate me / Don’t you underestimate me / 'Cause I know that I won’t go speechless
That’s what I’m going to do.. “I won't go speechless”. I will stand up for myself.
When the movie was over, I stood up and looked at her. She glared at me and chuckled a bit awkwardly. I stared at her. I shouted “thank you”. She scoffed. I walked away. My mother and daughter were talking to her and her friend. (During this scene, my mother was telling her that I am deaf since birth and needed the closed caption)I walked back and cut in conversation, I explained I am deaf, it was a closed caption box to help me understand the movie, and she insulted me that she disrespected me, my mother and daughter. She somewhat apologized but said somewhere in lines one of us should have moved then again I should have moved. I was shocked. Rosa Parks did not give up her seat. I am not going give up my seat. She said it was distracting. She went on and on. She was yelling. She still didn’t get it. My daughter placed her hand on my back for support while she stood there quietly witnessing it all. I was shaking and walked away.
During this scene, I looked at my mother and my daughter being part of this situation. I could not imagine what my mother is going through. Sure, I am a mother. But not a mother to a deaf daughter. She surely did not expect this event when I am in my thirties at a movie theater. Then I could not imagine what my daughter is going through. Because I do not have a deaf mother. I know the protective feeling of my parents while I was growing up. She is very protective. This was not a sight I want her to witness.
We returned the caption box to the front desk, a gentleman asked me how was it. I told him I am insulted because someone complained about the caption box. He held the caption box, his mouth dropped and said: “Wait, someone complained about you using this?!” I nodded. He wanted to call his manager to discuss it with me. I disagreed, I assured him it was okay, and he saw I was shaking. “Well, can we at least give you a free movie ticket? Please?”. I said “No, I’m better than that. I do not want the ticket, I’m deaf and have to deal with it like that.” I mean I have been discriminated quite a few times in the last ten years, I can’t seek free stuff out of it. That’s not my solution. My solution is to advocate for myself and educate others.
When we got home, my daughter and I sobbed in each other’s arms. She drew two pictures which were a mad face and sad face to put them on pillows for me to punch when I’m mad and to hold when I’m sad. I punched screaming and we laughed. I cried, “I need the sad pillow now!” She handed me a sad pillow. I cried. She hugged me, I explained to her that I was sorry for her to go through that. She assured me it was okay and she was sorry for me to go through that. We continued other therapy activities she had for me. I was impressed and in awe of her love for me.
I emailed the movie theater corporation to explain what I went through, reminding them I still do not want free tickets but want the location to be recognized for good customer services and suggested them to make a video on closed caption box and respect just like they show no cell phones to respect others during the movie. To educate others to be respectful to deaf and hard of hearing communities using the device. They responded with a well-written email (Here is a part of the email):
“We were disappointed to learn of the trouble you encountered during you're recent visit but are glad to know you were able to share your experience with the team. I have shared your suggestion to include a video about respect and awareness with the appropriate departments for consideration on your behalf.In addition, we have shared your email with the General Manager at the theater so he can share your kind words with his team.”
I hugged my mama the next morning. "I am sorry you had to go through that" said I. She said "No, I am sorry you had to go through that. I am proud of you. You handled it with grace. You showed your daughter how you stood up for yourself in a graceful manner." And my father was very proud of me for using my backbone. I wont go speechless and to my community, do not go speechless. Advocate for yourself and your child while educating others because not everyone is aware.
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".