Stupid? I Think Knot!

Last week, Rachel’s school was busy taking DRA (Developmental Reading Assessment) tests. According to her teacher:

“The DRA testing peaks at level 80 which is APPROXIMATELY 7th to 8th grade reading level. It's a comprehensive test which includes fluency and rate, decoding, and comprehension. It includes a writing component in which students write interpretative responses and back them up from the text with evidence.”

Rachel came home and told me the results of her test. But before I go into that, I want to get into a little detail about my daughter and her “disability”.

As some of you know, my daughter is hearing-impaired. She was born with something called, “Vestibular Aqueduct Syndrome”, which is a fancy title for saying that her cochlea was not formed correctly in both ears.

When she was born, they did a newborn screening hearing test at the Backus Hospital which she did not pass. This test measures the nerve impulses to the brain to see if a child is receiving certain sounds or not. Ten and half years ago, Dr. Toni Maxon was responsible for getting legislation passed in the State of CT, making it mandatory for all newborn babies to be tested before leaving the hospital. They passed the legislation six months prior to Rachel being born. Had they not passed it, quite frankly, I would not have known she had hearing loss until she probably went to school. She would not have been able to speak correctly. We learn how to speak by listening and repeating what we hear. If she didn’t hear it correctly, she would just repeat what she heard which would have been incorrect. Years ago, without these test being done, hearing loss problems were not diagnosed until much later until the child was in school and bad habits were already formed. Hearing-impaired kids were misdiagnosed at times and labeled as just being disobedient, disruptive, and deficient in learning abilities. All types of misdiagnoses were formed and children were being punished for behavioral problems. With the new hearing tests being mandatory in hospitals, parents are told right from the onset that there is a problem which allows them to take action sooner than later.

At the time of them telling me that Rachel had not passed this test, they assured me that it is somewhat common not to pass due to vernix in baby’s ears and instructed me to come back two weeks later. I was worried sick that my baby couldn’t hear. After all, with an infant, you can’t just ask her if she can hear or not. It takes a year or two for them to be able to communicate on that level. So I had no idea and had to rely on the test results that I was given.

Two weeks went by and I brought her back to Backus and she failed the test again. I was so upset over this news. All my siblings had perfectly healthy babies, and to be honest, I just knew it was time for someone in my family to have a child that had some type of problem. It was the luck of the draw for me to have a child with issues. I had had such a horrible pregnancy (threw up for 9 months, I was in and out of the hospital with all types of things) it just stood to reason that the baby was suffering through the 9 months as well. I was quite concerned that she would have greater birth defects than she did. So when they told me she hadn’t passed the test, I was quite upset, but not all together shocked. With everything that happened in those 9 months, I was just relieved that she didn’t come out looking like “Rosemary’s Baby.”

Up to that point, I had no experience of dealing with people with hearing impairment. All I knew is that my baby wasn’t “perfect” and might not be able to hear anything. I’m not sure if I felt sorrier for her or myself. I had questioned myself while I was pregnant, as I’m sure other mothers do, questioning if I had the patience to have a baby in the first place. But getting this news, I knew I was going to have to have a great deal of patience to raise a child that couldn’t hear and somehow I was going to have to reach inside myself and find whatever patience it took.

At first, I didn’t believe the test results. They told me I needed to find an audiologist for further testing. But instead, I didn’t accept their findings and I wanted more proof that my baby couldn’t hear. So I made an appointment in New London at the Audiology Department at the Lawrence and Memorial Hospital. Keep in mind that the way they test babies is they put little electrodes on their heads to measure nerve impulses. If the baby moves, it skews the results. It’s not like you can tell the baby not to move. Infants don’t quite understand that. Every time we tested, Baby Rachel would of course wake up and therefore, I felt the results were inconclusive. I needed someone to tell me definitively if she had hearing loss, or if she was deaf, or what. So I made an appointment at Yale and took her there for tests for a third opinion. This time, they gave her a sedative to knock her out so they could complete the tests. But even then, I can’t recall what exactly happened, but they couldn’t tell me for sure what her hearing loss was, only that the test results indicated that she did have hearing loss and that I needed to get her fitted with hearing aids or put her through an operation for a cochlear implant. As explained to me, the surgeon removes the ear and goes into the brain and…”Stop right there! Nobody is going into my baby’s brain and nobody is removing my baby’s ear!” Especially not without conclusive evidence that this is what she needed.

For six months, I couldn’t believe she had hearing loss. I was in complete denial. I guess because nobody was successfully able to get through the entire tests with her, for various reasons, and I kept holding out hope that the tests were wrong; that if she could just make it through the whole test, possibly over time, this would correct itself. It wasn’t just the hearing tests that led me to believe and to hope that this wasn't true. All the reasons I was given for babies to be born with hearing loss did not fit our situation. Genetically, there was no accounting for this to happen. There was nobody on either side of the families that had any type of hearing loss. There was a list of possible other causes but I didn’t have one of the items listed. So how could this be? (See, luck of the draw!) Between looking at the data that typically causes hearing loss and looking at the family histories, coupled with knowing that she never successfully made it through her testing, I was certain this was all just one big mistake. I felt like I was going to keep getting her tested until someone told me that she was fine.

What little I knew about hearing loss held me back. I did little things like clapping my hands and upon seeing her flinch, this was proof to me that she could hear. Certainly the doctors and test results were all wrong. My mother came to my house for a visit and did the same thing. “Oh, she’s fine” my mother would say. If that infant could only speak and tell me she was okay, then I would believe it.

The only experience I had with deafness was at the age of 13, I had a deaf cat. She was all white with blue eyes and was totally deaf. She couldn’t hear a thing. To get her attention, we would need to cause a vibration like stomping on the floor or throwing something at her to cause her to look. Well, we wouldn’t actually throw something at her, per se, but rather near her. Was I going to have to do the same thing with my new baby? Throw things at her to get her attention? Dear God, I don’t think I can throw a shoe at my baby! My cat’s demise was escaping out of the house that she was never allowed to leave. It happened to be Halloween night, while we were all getting our costumes on and focused on going trick or treating, the cat got out the door somehow and was hiding under my father’s car. My father, who was on his way to bowling, started his car, which the cat couldn’t hear, and he backed his car up over her, killing her. Dear God, will my child never be able to leave the house, and if she does, will she get hit by a car? This was all the experience I had to draw on.

My last attempt at trying to attain the news I wanted to hear, I took her to the Children’s Medical Center in Hartford. Again, they knocked her out, which by the way, is a scary thing all unto itself. To see your infant baby on a gurney, knocked out cold, hoping they didn’t give her too much of the drug so that she never wakes up again, is stressful enough. Parents that have had to subject their child to surgery know what I’m talking about. Weighing if the right choice was made and being able to live with the outcome can be the longest hours in one’s life. One tiny mistake and your life and theirs can be changed forever. Rachel was about 5 months old at the time. They did a complete head scan which provided films of her cochlea and they also did the electrode tests. Here she is during her test:

Two weeks later, I had to return to the doctor’s office for the results. My doctor, an ear, nose and throat doctor, who was very well-respected in CT for being on the leading edge of performing cochlear implants, gave me the results. He showed me on the films that my daughter’s cochlea was not formed correctly. Up to this point, all the discussions and test results had all been subjective. But here this man was showing me an actual picture and comparing it to a normal cochlea. And even as he was telling me and showing me all this, I was still trying to find ways he could be wrong. He sensed this, and finally, this young handsome doctor laid it on the line for me. “Ms. Kane, your daughter is hearing-impaired. And as her mother, you need to get her fitted for hearing aids as soon as possible. You’re her mother and it’s up to you to get her what she needs now and start advocating for her. She needs you to be her mother.” I had not had anyone be so direct with me. I started to cry because I knew he was right. I knew that there was nowhere else to take my baby for more tests. I had exhausted all the local medical centers in my area. I had taken her everywhere I could and basically everyone kept telling me the same thing. But not as directly as this man. I cried in his office and he let me cry for a while. Then he put his arm on my shoulder and said, “She’s going to be alright because she has a mother who loves her and cares about her and you’re going to be alright.” This, of course, made me cry even harder.

We left his office and I cried for about a week. I cried over the thought that my daughter would never be able to hear the finer things in life. Anyone that knows me knows I’m a huge music buff. What would this mean to have a daughter who can’t hear music? Would she never be able to sing? Sing? Would she ever be able to speak correctly? Would she ever know the sound of my voice? Would she be able to live a normal, productive life not being able to hear? What would she be missing out on? Would she be able to hear the sound of birds chirping in the morning? Would people throughout her life make fun of her for having to wear hearing aids? Would she have friends? Would she be able to communicate with other people?

All these questions overwhelmed me. I remember distinctly going to the Big E (Eastern States Expo) and upon entering, wheeling my baby in her stroller up to a huge glockenspiel that was set up at the entrance of the park. We stood there listening to the wonderful sounds, all the while wondering if my baby could hear it. I stood there crying and when I looked over at Dianne, she too had tears in her eyes. Something that rarely happens for Dianne. Her tears confirmed for me that I was not alone in my fears; that the disappointment for my child was real. (Not disappointment IN my child, but FOR my child. There is a great distinction.)

In that moment in time, I threw myself a little pity party. Why me, Lord? Why didn’t I get a perfect child? Why did I receive a child that couldn’t hear?

What I didn’t realize at the time, but certainly do now, is that I DID receive the perfect child. The perfect child for me!

Here is a poem that has been circulated to parents of children with disabilities to help them know that they are not alone. I think it’s a good idea that parents with healthy children read it as well so I am posting it in my blog. It explains it well. Emily Perl Kingsley wrote this poem that describes her journey, a journey that many parents can relate to as they reflect on the beginning. When I received a copy of this, I read it and cried because it is so true:

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability to try to help people understand it, to imagine how it would feel. It's like this:

When you are going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. The Michaelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland".

"HOLLAND?!" you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would have never met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But, after you've been there for a while you catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, Yes, that’s where I was supposed to go. That's what I had planned.

And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

After a week of coming to grips with what life had handed me, I pulled myself up and started to kick into action. This child needed me, and dammit, I was going to do everything in my power to give her the best opportunities to hear no matter what. I looked online for my options. There were three resources in CT in my area that offered different philosophies. In the hearing-impaired/deaf world, there is a division of philosophy that I didn’t know existed until reading up on it. The differences are this: one school of thought is that being deaf is completely natural and that nothing should be done to alter that; that the means in which to communicate is sign language. Period. Some deaf people view it as more of a culture than it is a disability, and find it offensive that anyone would want to force them into hearing to make them be like everyone else. (For reference, there was a good movie that went into detail about the struggles of deaf children growing up with deaf parents and the difference of opinions on getting cochlear implants to be able to hear. If you are interested, go to The other school of thought is that there are medical advances that give access to the hearing-impaired and deaf so that they gain access to sound, and if they gain access to sound, they can learn to speak, and therefore don’t need to learn sign language as their primary source of communication. Basically, if technology could get people with hearing loss to be able to hear, then everything else would fall into place, thus regaining the sense they lost. There were three places in CT that were options for me to take Rachel to. One offered just sign language, which I personally don’t know and would have to learn in order to communicate with my daughter. The second one focused on the technology and giving access to those who couldn’t hear, and teaching them how to listen, hear and speak using that technology. And the third option was a combination of the two but was a far distance away which was a deterrent. As someone that has worked with computers my entire life, I chose to go with option two, getting technology to help my daughter hear. My decision was also based on a few other factors. For instance, I hear and speak, and therefore, she should learn how to do those things; as much as there is a large population of deaf and hearing-impaired people that she could get to know, I didn’t want to limit her in any way by just teaching her sign language which would put up a block between herself and other people with normal hearing.

I called and made an appointment and got my daughter enrolled in the “Birth to Three” program through CREC Soundbridge in Wethersfield, CT. The Birth to Three program is provided by the State. Rachel was provided with digital hearing aids which helped her hear. They were programmed for her specific hearing loss. Rachel has hearing loss in the high frequency range. This is a complicated thing to explain, but for simplicity, she is not totally deaf and can hear things without the use of her hearing aids. But she may not hear them correctly because high frequency letters and sounds like the letters /s/ and /f/ she can’t hear. So, for example, without her hearing aids on, the word “stop” she would hear as “top”. But with her hearing aids on, digitally, the sound of the letter /s/ is increased in volume, accentuating the /s/, which allows her to hear the /s/ and the entire word “s-top”.

At eight months old, she was taught to listen through these devices and learned how to speak. From day one, as soon as I accepted my child’s disability, (so what that it took me 6 months!) I always, ALWAYS treated her like any other child. In addition, I emphasized that her teachers and caregivers do exactly the same. She’s just like any other kid and her disability has not held her back in any way. (Other than some physical activities like skating and that’s only because if she takes a blow to the head, she could lose more hearing, which is not what we want. So she doesn’t participate in contact sports. But that’s her only limitation.)

As Rachel has grown, she is becoming more aware that she is slightly different, but not in a bad way. She is starting to advocate for herself, and therefore self awareness is being brought to the forefront. But prior to this, she didn’t know she was any different than the other children around her. I chalk this up to many factors. One, I treat her exactly as I would if she could hear normally. Two, the school environments that I have put her in have been supportive and conducive to Rachel’s learning, and three, she is very bright and picks up on things very quickly.

I started writing this blog all to get to this one point and somehow it has taken me 5 pages to get here.

The stereotype of hearing-impaired people is that they are stupid. I think in recent years, as more and more people are getting diagnosed and getting hearing aids and cochlear implants, the stereotype is slowly going away. I think the stereotype itself comes from the way that hearing-impaired people or deaf people speak. Most hearing-impaired people speak nasally. That’s because what they hear is what they are reproducing. Before the digital age, hearing aids weren’t of the best quality. But nowadays, the technology has progressed. But there is still a stigma somehow that people that can’t hear are stupid. And guess what? I am here, well, Rachel is here, to dispel the myth! And there are plenty of other fine examples of very intelligent people who are hard of hearing out there. Slowly, but surely, the stigma is fading away and I can only hope that knowing people like Rachel will help to cast those silly notions aside.

Case in point. Last week, Rachel’s school took the DRA (Developmental Reading Assessment) tests. According to her teacher:

“The DRA testing peaks at level 80 which is APPROXIMATELY 7th to 8th grade reading level. It's a comprehensive test which includes fluency and rate, decoding, and comprehension. It includes a writing component in which students write interpretative responses and back them up from the text with evidence. We have been working on this all year and Rachel is an EXCELLENT writer who fully explains her thinking. We tested everyone this week. Rachel scored an INDEPENDENT reading level of 80. There are no more books or levels with this particular tool. This is a wonderful accomplishment! It is not unusual for my sixth graders to reach this level - but kudos to Rachel for being the only 5th grader so far.”

I am so very proud of her!!! And most of all, she is proud of herself for this accomplishment. She was so excited and couldn’t wait to tell me the news. It takes some "normal hearing" kids until 7th or 8th grade to get to the 80 level. She's in 5th grade! Stupid? I think not!

Now, where she gets her brilliance is another story. It certainly isn’t from me or my genes. And to prove this point (that’s how stupid I am, that I’m actually going to prove to you how stupid I am!) it can be proven by the next two pictures. This first one is from when I was in 3rd grade. Look at it closely. Can you identify the two things that are wrong with this picture?

Genetically, even though she didn’t inherit her hearing loss from anyone in the family tree, I am thankful that she didn’t inherit our brains either. Here’s a picture of my Grandfather in London. What is wrong with this picture?

She has far surpassed the odds, hasn’t she? The only disability the kid has is us!

My Kaneclusions: If you’re one of those people that think people who can’t hear are less intelligent or somehow are less bright, then you need to meet my daughter. She will blow you away with her confidence, language skills, writing abilities and overall intellect. I was once frightened for her well-being, wondering if she would be able to learn if she couldn’t hear. Looking back, what the heck was I worried about? Of course, that’s easy to say now.

If you know someone that just received the news that their child is hearing-impaired and they are struggling with that unexpected news, you need to share this blog with them. If, for nothing else, to give them hope that their child can be as successful and productive as anyone else, and not aspire to be mediocre, but rather can actually excel to their highest potential!

Dr. Toni Maxon, Rachel’s audiologist and speech therapist, was the one that got the State to do mandatory newborn screening hearing tests. Without her, I think that I would have just thought that my daughter wasn’t all that bright. I wouldn’t have known that she wasn’t learning or speaking correctly due to a hearing loss. Toni was a well-respected expert in her field and died unexpectedly in a car accident on her way to her only son’s college graduation in Long Island. Her passing was a loss to the entire hearing-impaired community. She was a pioneer and will never be forgotten. Our paths crossed because of my daughter’s disability and had my daughter not been born hearing-impaired, I would have never met her, or others like Ellen Gill, who taught my daughter to listen through the use of hearing aids and taught her how to speak. Both women have been instrumental in Rachel’s success in using her technology, and for that, I am eternally grateful. These women, and others through the years, have been in my Holland. Italy now looks pale in comparison.

When God was handing out souls, was Rachel the best child for me? Absolutely! Are there times that I wish she could hear like everyone else? Oh sure. But my point of writing all this is to let people know that just because she wears funny green things in her ears, doesn’t mean she’s any different. And actually, if there is a difference that needs to be distinguished, it’s that she may be brighter than most. I can live with that!

I joke with Rachel that God gave me her because I had experience with deaf cats. (No objects were flung in the making of this child.)

And for other parents that might be feeling like they too are taking a trip to Holland, not Italy as planned, I can tell you that this is not turning out anything like my worst imagination had played out for me ten years ago. My daughter can sing, dance, speak clearly (with the exception of her /r/ which she is presently working on but isn’t part of her hearing impairment), can act and perform on stage. The list is endless of the things she can do. She is a pre-teen, and like all pre-teens, she is listening to teeny-bopper music. To think I cried that she may never be able to listen to music. At this point, when the cd player is blasting and she’s singing as loud as she can to the likes of Justin Bieber, I say to you parents out there, be careful what you wish for!

1 comment:

Dianne said...

That is all so vivid and yet seems a lifetime ago. When she was born and they said that she had not passed her hearing screening, it was as if they were talking in a different language...Dutch perhaps?It is amazing how the right people and opportunities opened up at the right time for Rachel. None as important as her mother. You may have accepted that Rachel has a hearing loss but you have never accepted, nor let anyone including Rachel accept, that it will limit her potential.

I sometimes forget that Rachel wears hearing aids. I sometimes wonder if she is so amazing in spite of her hearing loss or because of it. She wouldn't be her without it.

In any event, YAY Rachel! I can't wait to see what you do next!