Saturday, November 27, 2010

My Attempt at Cramming the Importance of What's "Between the Ears" into a Nutshell

Somebody recently formed a 'Deaf Community' group online BabyCenter.com and started a thread with something along the lines of "How did you become deaf?" This is my response on November 26 after reading several responses, knowing there may be new parents out there who have recently found out their child is deaf or hard of hearing.

Oh wow, there's a variety of experiences here regarding deafness, themselves or their kid(s). There's no one correct way to go about it, going for hearing aids or cochlear implants, or nothing. One of my favorite quotes goes like this: "It's not the ears that are important, it's what's BETWEEN them that counts." !!!

It is very important that your child has language from the beginning! Whether it is sign language or spoken English, pick which one is the most convenient to the deaf or hard of hearing child, not what is easier for the people around him/her. This may be hard to take but it will pay off in the long run. Research has shown that if a child starts out in ASL, with ASL proficient parent(s)... even those with satisfactory skills, he/she will succeed in picking up the 2nd language, English, for example.

I totally recommend taking your little kids to a Parent-Infant Program or Infant Toddler Program in your county or state, or even a Deaf school. The Parent Infant Program at my new son's school has a variety of deaf kids with other disabilities including Down's Syndrome and Cerebal Palsy... and kids who are simply Deaf. If you're not able to access these, at least your child needs to have friends just like him/her and if he/she can meet any Deaf or HH role models that would be incredible!

I was born with severe to profound deafness, unknown reasons. I even had my blood sent in to check for Connexin 26, a known gene that causes deafness and nada. I fall in the 20%-30% of those of us with unknown reasons. Took speech therapy in public school, all the deaf/hh teachers signed, I had interpreters in my mainstream classes and at home Mom was on top of me with saying words correctly BUT she always signed to talk with me. I transferred to the Washington School for the Deaf at 12 years old and it was a profound positive experience for me- everyone signed, period. From the cafeteria staff to the superintendent. I fell head over heels for sports and REAL teamwork. Hard to put it all in a nutshell. There's a good side to everything.

My husband is Deaf, my oldest son (6) is Deaf and fluent in ASL and is in a Deaf school (not residential); my daughter (4 1/2) is hearing and not yet old enough to start kindergarten; my newest son is deaf and blind. He was diagnosed prenatally with bilateral anophthalmia-no eyes (now recently corrected the diagnosis to bilateral microphthalmia- little eyes). He is totally blind and at the best he just might have some light perception in one eye. We are hurrying to get him hearing aids and he'll have them in by the time he's 5 months old (he's 4 months now). We read that deaf-blind children are sorely delayed simply by the severe absence of environmental input. We also are considering cochlear implants for him. We learned that CI's will help deaf-blind children develop language, yet ironically not spoken language (based on a study on only 7 deaf-blind children with CI at one site... I agree when they said there is a need for a multiple-site study). I'm curious about the same study on deaf-blind with hearing aids, but so far I know of none.

A Deaf and hearing child is normal to us in our family- it's just a difference in their ability to interact with the world around them. It's our 'normal'. Now with our baby who is also blind, that's where I find things... new experiences may be parallel with parents who can hear who happen to have a deaf child/children. It's a different and new experience, and that's a 'new normal' for all of us. Another thing we all have in common is that we love our little ones to bits! <3

Ms. Holligan- I'm so sorry if I just wrote a book on your thread!!! If any of you want to get in touch to talk about deafness, blindness or deaf-blindness, etc. feel free to message me.

Skyler and Anastasia hangs out with 9-week old Orion on September 20th.

1 comment:

  1. such a good post! I frequently go on Baby center and I am going to find this thread.

    I agree about using CI to help to enhance the exposure. Being deaf and blind are very hard and we need to do every effort to make sure the child is exposed to things. I applaud you and your determination to get the best care for Orion!

    Shannon

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