My Comment to Amy: The Greatest Irony: Message to EHDI

Posted: January 31, 2011 in Uncategorized
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Amy,
I am also posting this on my blog as the comment to your blog, “The Greatest Irony”: Message to EHDI

Your “The Greatest Irony” is what got me motivated to be an strong advocate for Deaf babies and their parents to be educated with the responsibility duty as “parent’s choice” because too many parents are misguided or naive for what is best for their Deaf babies and children in schools.

And also the sad fact is that I am being attacked of my mission and vision for Deaf babies and children in schools by some hearing impaired misguided colonialized bloggers to mislead the public that my ambition should be suppressed.

The biggest problem is that we are not getting to the root of the problem why Deaf babies are not getting their cognitive development skills at early age, 0 to 5 years old which is why we are still having mega problems in Deaf Education.

Here is what this hearing parent wrote last month and there are many parents going through the same problems and that is a fact we should not ignore because Deaf Education is still a mega problem despite how some special interest organizations having the huge domination control in the media to mislead the truth with what Deaf children should be.

Message letter from Kim Rheaume of Minnesota;

I believe that it was assumed right from the time we received the phone call that our soon to be adopted deaf daughter would need to be “fixed”. Her birth parents in Korea wanted to place her with a family that could “help” her, they already had one hard of hearing child and had sacrificed much as a family to get the proper education for him. Then, this profoundly deaf daughter was born, and they wouldn’t be able to the proper education for him. Then, this profoundly deaf daughter was born, and they wouldn’t be able to provide much of a life for her in Korea at all. By the time we brought Zoe home from Korea, everyone was on board with her having cochlear implant surgery. She went through a marathon of tests, evaluations, poking and prodding, and in 6 months she had a successful implant surgery.

At this stage we never discussed that Zoe was deaf. We never met anyone with a deaf child that hadn’t had a cochlear implant, gave no thought to communication, after all, she would be able to hear and learn to talk so life wold be “normal”! None of the professionals we were working with brought it up either. We were so naive, once our child was “fixed” she wouldn’t be any different than the rest of the hearing world. We met a family with 2 daughters that had successful implants and sang in their church choir. Their speech was normal and unless you saw their processor you would never question if they had hearing issues. This is what sold my husband on this adoption.

After her surgery we met a family whose son was born deaf, he was 12 months old and was to be one of the youngest implant recipients in that particular hospital. They had not told any of their family that their son was deaf, just delayed, none of their family knew of the surgery and they didn’t plan to reveal that fact until he was talking normal and being normal. They were embarrassed and still talking about those “fault” it was. We had the same surgeon, their operation was scheduled right before Zoe’s. Noe’s time came and went, the nurses assured us that things were fine sometimes these things run a little long. After about an hour, our surgeon came out to the waiting area with another man in surgical garb. He asked us if we minded if this doctor, who was his mentor, could do our daughter’s surgery as there had been an unusual occurrence in the previous surgery and he had to monitor the situation. Later we were in the same recovery room and we learned that there been brain matter oozing out of the boy’s ear, and that was the reason for the change. It was in the recovery we learned the story of the secret deafness, they were so distraught but unable to call any family or friends for support as they couldn’t let the secret be known. My husband sat up through the night talking to the mother while she hold her son upright to help prevent fluid collecting in some part of the brain. We counted our blessings.

The next months were rilled with audiology visits 2 times a week. speech therapy 2 times a week. Itinerant teacher 3 times a week. It was an exhausting schedule for the 3 of us, 2 year old newly implanted Zoe, her 3 year old sister who felt displaced by this new sibling and myself. All the focus was hard to comply to all the requests we had for her to try harder. We secretly used some basic signs, feeling like we would cause her to fail to speak. She stated preschool in a DHH program in Minneapolis school as well. She was in the mainstream school part of the day (I had to actually ask them to move the interpreter to the front of the classroom by the teacher so Zoe didn’t have to keep turning her head to the side of the room then back to the teacher) DHH others parts of the day. More signing was used because there had to be some mode of communication and in a year she had less than 5 spoken words. The regular teacher found the interpreter to be a distraction in the classroom, she wouldn’t flick the lights when the activity changed seated Zoe with her back to the reacher and determined Zoe was not attentive when she didn’t follow what was going on in the classroom.

In the next year we added more sign in school. At IEP time we decided it would be signed English, because, of course, she would speak, eventually. In 2 years she had less than 10 recognizable spoken words. In all this time the speech therapist, audiologist, doctors, teachers, nobody, suggested that she was deaf, wasn’t going to learn to speak and we should deal with it. We were so naive and expected that the professionals around us had our needs and concerns at the center of their interest, we were discouraged from looking in deaf education programs, we were told they “taught a whole different culture” and that wasn’t what we really wanted for her, that she would always be “different”. We were reassured by the speech therapists, teachers and others that surely there was a breakthrough coming soon and she would talk, I, however was not satisfied and requested help finding other families with deaf kids. I wanted to talk to other people living this life. I asked for sign language classes for our family. I asked for social experiences for our family, for Zoe. In 2nd grade i moved her into the DHH program with no mainstreaming. Sign language only, the girl needed a method of communication. The school system wanted her put into an autism program, she didn’t test as autistic. The school system wanted her put into a remedial special ed school program with very low expectations, her psychological evacuation showed she was of average to above average intelligence ranked with the deaf children of the same age. The school system would not allow me to explore other educational options outside of the ones that Minneapolis offered. I was reprimanded and our school social worker was “relieved of her duties” when we visited other programs outside of the district. No one ever said “she is Deaf-let her be deaf”.

Two weeks before Zoe started 3rd grade I found Metro Deaf School. I knew immediately she belonged there. they understood that she was deaf, no matter what modifications, no matter that her parents were hearing. She is in 5th grade now, and she has discarded her cochlear implant processor. She is language delayed still but she has come a long way in the past couple years and a lot closer to being the Deaf person she was born to be. As a family we are proud of her and support her are are doing our best to be part of her world.

I admit that we didn’t seek out deaf alternatives for Zoe, and we had a mindset that she would be “normal” with the implant. We came to the realization ourselves that being deaf is ok, and I wish there were some professionals or others along the way that would have pointed out that she was “normal” the way she was born and we were trying to make her something she wasn’t. Today Zoe is one of the happiest people I know and brings a lot of joy into my life, and is taking me on a journey that I am now trying to enjoy instead of changing the direction we were intended to go.

Kim Rheaume

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