Sunday, February 27, 2011

Hearing Loss Profile: Melissa

Today we get to meet Melissa. Please visit her blog, A Journey with a Cochlear Implant.

Lissa's Story

Hello, my name is Melissa but I'm also known as Lissa. I grew up learning to communicate through spoken language, but of course this does not mean I cannot sign. I can- I love to sign with deaf friends (those who use BSL as their primary form of communication) and my mum signs to me in the mornings when I do not have my implant on.
I was diagnosed at 9 months of age with severe-profound bilateral sensioneural hearing loss. Doctors and my parents think my hearing loss is due to prematurity and being given medication. I was given a group of antibiotics known as aminoglycosides- without them I would not be here today. I was born as one of triplet girls (one did not survive) at 28 weeks gestation.

My parents were warned to watch us for any developing disabilities over time. I was aided with my first body worn hearing aids at the age of 1 year old. My mum has always told me that I was not one of those kids who hated their hearing aids and tried to get rid of them at every oppurtunity. I LOVED my hearing aids!
I got my first pair of BTE's (behind the ear aids) at the age of 5. I attended a school for deaf children from 3-11 years old.

My hearing loss progressed to profound at most frequencies around the age of nine years old, so I went forward and went through the assessment process for a CI. In October 2000, at the age of 10 1/2 years old, I was implanted in Manchester with a Nucleus.

I attended a local-ish comprehensive school from 11-16 years, I was mainstreamed for the first time in ALL classes although with a Communication Support Worker (CSW). Having these CSW's in school and college has provided me with the ability to advocate for myself and manage real situations.

I am still a bimodal user, as I wear both my processor (in the left ear) and my hearing aid in my right. It works for me, since both (especially with the use of my CI) helps me to hear.

My advice to parents of young children is follow what you feel is right for your child. Any method of communication, amplification etc will lead to your child being successful. A deaf child can be anything that they want to be. You're the parent and whatever you feel is right, do it. Do not let other people sway you but let them offer you guidance, as they cannot chose for you.

During my schooling years, I have had many types of equipment to help me, in primary and secondary I have gone through many FM systems and I think my favourite one was the FM Genie, it was more modern and small. But nowadays I'm sure they are a lot smaller!!

Being the only deaf member of the family, can sometimes be frustrating but with requests and giving my family ways of to make life easier for me, they can change!

I am now working a day care nursery with children aged 0-5 years, communication is quite easy but if I don't understand I ask to repeat, but it is not a major problem.

Thanks Lissa! It is important as a hearing parent that I understand the frustration caused by being the only hard of hearing person in the family. I'm glad your family was able to adapt. There's hope for us yet!

If you are deaf or hard of hearing and would like to be featured here at BTaC, or if you are a parent of a deaf or hard of hearing child, please send an email to bigteethclouds at gmail dot com to be interviewed.

Sunday, February 20, 2011

The tinge

tinge –noun. a slight admixture, as of some qualifying property or characteristic; trace; smattering: a tinge of garlic; a tinge of anger.

In my case, a tinge of why us?

I get this hint of a feeling occasionally. It's nothing like the initial blow of finding Julia's hearing loss. That was grief. The grief was compounded by guilt. After all, it could be worse. I grieved for three weeks and then felt angry at myself for still feeling grief. I dealt with grief, anger, and guilt for the balance of the first year.

If only I'd known then that three years later I'd still be feeling the tinge. That very faint, pathetic feeling when I wonder why this happened to us.

Why us? My mind whispers when she's up in the night gagging and I have to run for one of her hearing aids to communicate with her.

Why us? I murmur when she rips out the right hearing aid because "it's not working" only have me troubleshoot both and discover that it's actually the left one that's blocked. (She twisted the tubing 360° when she put it in.)

Why us? I groan as a less than two-year-old dancer girl fixates on the pretty rainbow ear molds in my daughter's ears and investigates them with a stiff poke.

I'm not thrilled to still be feeling it, but I let myself have a moment now. There's no point in feeling guilty. This is our thing. Other people have more difficult challenges, but that doesn't take away my right to feel occasionally dismayed at our occasional hardships.

It is after all, a "slight smattering," perhaps one day, the tinge won't even exist.

Sunday, February 13, 2011

Future IEP notes

Working as a special education paraprofessional in our local school district has given me lots of exposure to Julia's future educational environment. I've worked in different classrooms in first through fifth grade. I've spent time in the middle school. Currently, I'm doing a stint in high school.

The grade school teachers ask for students to get up and answer math questions. The little children give correct answers while facing the white board in barely audible voices. This is going to be a problem.

An assembly turned boy versus girl shouting match got really loud. Several special needs kids were pulled into the hallway to escape the sound of competitive screaming/shrieking. This is going to be a problem.

High school students are required to swim as part of gym class. I learned that kids with an IEP can opt out of this requirement. Good to know.

So, I have a page in my trusty notebook dedicated to "ideas for future IEPs." For next year we'll talk about tennis balls on chair legs, the sound field and personal FM. I'll inquire about getting a Mic for those student teachers to help clarify their shy white board mumblings. I'll ask that Julia have the option to remove herself from any assemblage of shrieking kids or at least have someone knowledgeable enough to remind her of her hearing aid volume control.

I feel informed and prepared from my time spent subbing. Come IEP time I'll be prepared with my notebook. There's stuff in there for years to come.

Sunday, February 6, 2011

The Hearing Restoration Initiative

Julia's certified teacher of the deaf has been teaching her all the parts of the ear. Julia can draw a lovely cochlea. One day she explained the function of the Eustachian tube. She knows that her hearing loss is most likely due to missing hair cells on her cochlea. Her knowledge about ears is impressive.

We don't know what caused her to lose hair cells. We'd all love to have them back.

The Deafness Research Foundation (DRF) is launching a fundraising campaign to raise money and awareness for hair cell regeneration. They're calling it the Hearing Restoration Initiative.

I first learned of this research at the AG Bell convention last summer. A research symposium presenter went into detail about the use of mouse cochlea to try to get mammal ears to behave like chickens. Chickens, I learned, regrow hair cells and repair their hearing spontaneously. In a month, a deafened chicken can hear again. Mammals can't do that.

With "proper funding" DRF thinks deafness could be cured in ten years.

Deafness could be cured. I like the sound of that.