My daughter was born very very sick. The doctors had made some mistakes and it looked like she was going to die. She needed a special heart-lung bypass machine called ECMO to even have a chance at life. She was deprived of oxygen for 6 hours while they transported her to the only hospital in 3 states with that machine. Her outlook was very poor. After what can only be described as a miracle from God, she lived. She was removed from the machine at 8 days old. We were then told that she was very possibly brain dead and that we should discuss removing life support. But after a few tests they determined she wasn't. We were then told that Miss Kat would be severly brain damaged, that she would never talk or walk. They were wrong about that too.
At six weeks old we were finall able to take Miss Kat home from the hospital. She was on oxygen and monitors and very weak, but overall she was fine. She was a colicky baby, with a few lingering medical issues, but she was doing great. She loved the songs Daddy sang (he had deployed to the middle east during my pregnacy and made a tape of him singing children's songs for me to play for my belly and we also played them in the hospital when we couldn't be with her) and Baby Einstein movies. She learned to babble and said "Mommy" "Daddy" and "dog" all before her first birthday.
When Miss Kat was 15 months old I noticed that she still only had a few words. I spoke to the doctor at her well baby check up. She said it was perfectly normal. I wasn't sure she was right. About that same time, we had a family member recommend "Signing Time" and baby signing to us. We started watching the videos and taught Miss Kat her first sign (cookie). She would sign with great enthusiasm and voice "OOKIE!"
At 18 months I took Miss Kat to the doctor for another check up. I explained that she still wasn't gaining more words. The doctor said there was nothing to worry about. I didn't believe him. I went home and called Early Intervention myself. I told them that I thought my child needed speech therapy (there are several people in my family with speech issues including my father and sister), and they asked me if we'd had her hearing tested. I said yes, that she had passed her newborn screen and a follow up ABR at six months. They told me to go to the Health Department and have it tested again.
So at 19 months old we discovered Miss Kat's hearing loss. She was moderatly-severe hard of hearing. She loss sloped from 20 db down to 60. She was fitted with Oticon Gaia hearing aids at 22 months old. She loved them. With her aids her hearing thresholds were 0-10 db. We began receiving Early Intervention services including a PIP (parent infant program from the Deaf school) advisor, speech therapy, and a Deaf mentor. We continued to sign, because now that she was deaf why would we stop. We thought deaf people signed....right?
We immediatly began an ASL class offered by our Deaf community center. We finished both the begining and intermediate classes before Miss Kat turned 2. We also found a Deaf church to attend. We spoke to many Deaf adults and asked them what their parents had done and how it affected them. We learned that the vast majority had been educated oral only and struggled and then when they became adults they learned ASL and discovered how easy communication could be. Then they became angry with their parents and pushed away from them. We didn't want this to happen, so we continued with ASL and the Deaf community.
Eventually it became time to choose a preschool for Miss Kat. We originally wanted TC, because it offered both sign and speech, the best of both worlds. But when we visited the program it was an utter failure. The children were 4 and didn't know simple nouns like "shoe". (But the oral class was even worse, the students didn't know their names!) So, we went and visited the bi-bi school. We walked in and knew it was the right place for Miss Kat. It was a normal preschool for normal kids who just happen to use a language that isn't the same as mine. This wasn't "special ed", they were communicating with each other and the teacher with ease. It was perfect.
Over the next two years, Miss Kat received 20 minutes of speech once a week. I didn't like that at all, but I put up with it because the education was so much better. Miss Kat also began to very quickly lose her hearing. At the end of her age 4 preschool year, she had dropped to about 80-90 db, and the Deaf school had merged the TC program with our bi-bi school. They were now able to offer some of the benifits of the TC program to my daughter. She could have speech 3 times a week and have a "Oracy" specialist come to the classroom everyday. I was thrilled.
During the summer Miss Kat lost even more hearing. She finally hit 100 db, and that was some kind of line in my head. She was actually deaf now, she wasn't hard of hearing. It made me step back and do some thinking. I realized that her aids weren't doing the things that they used to do. Her speech was slipping, she couln't hear birds anymore, or even some of her toys. These were things she missed. She would ask me why a squeezy toy didn'y squeak anymore, and I didn't know how to explain it to her. She valued her hearing and now it was leaving. I wanted to see if there was a way to get back what she used to have.
I went to the audiologist and asked about a CI. I started doing research. I read and read and read for 3 months. Honestly, I used to judge CI parents. I had been told over and over that they just wanted to "cure" their kids, that they didn't accept the Deaf community, that they were too lazy to learn ASL and that they were making their children suffer. But I knew our family wasn't this way, so it was ok for us to look at a CI. But then I started to talk to more CI families (I had previously only associated with ones who signed too) and they had not tried to change their children. they loved them and just wanted to give them options and the only way they could was through the implant. Not all the parents were like this, but most. They were just trying to do the best they could.
As I continued to research I started reconsidering all my assumptions. Many Deaf people had told me what a horror speech had been for them, but it wasn't that way for my daughter. She loved speech and would be so excited to go, and had fun every single time. Many Deaf people told me that they hated their aids and that they gave them headaches and that would hide them and throw them away as children. But that wasn't true for Miss Kat either. She loves her aids and asks for them in the mornings. I started to consider that perhaps their experiences weren't going to be the same as my child's, that somethings had changed. I started seeking more support from other parents of Deaf children, people whose experiences were the same as mine and my child's. I NEVER left the Deaf community, or sought to seperate my child from other Deaf kids, I just started asking for other opinions too.
We finally decided that a CI was best for our daughter. We did consider waiting until she was older and could give more of an opinion about the matter, but we realized by waiting we were making a decision, we were choosing to make the implant less effective. She had given us age appropriate signs that she wanted to hear, and that she valued speech and listening. We are sad that it has come to this, we would have much rather had her not lose more hearing! But that being said, we are happy that she is able to receive technology that will make it so much easier to hear speech than she ever could with her aids.
Will she ever learn to have intelligible speech? Most likely. Will she ever be able to understand without ASL? Don't know. Will she choose to use speech instead of ASL? I really doubt it. Honestly, our biggest fear right now is that she becomes hugely successful with the CI and wants to drop sign. I don't know what we would do...
So there it is. That is our story. Thanks for reading!
). And I protested less and less. Eventually I gained confidence to order for myself at a young age (compared to my hearing cousin, same age, who has asked me to order for him too). I'm sure most people would not consider this "child abuse" but it could be within the same ballpark as forcing a child to do something s/he doesn't want to (ex. oral) which can viewed as child abuse. I think people have a problem defining a line between challenging a child and forcing a child.
Grummer.
