Friday, May 8, 2009

Not Deaf Enough: Raising a Child Who Is Hard of Hearing

I haven't done a book review in a while, but that doesn't mean I'm not reading! This book was lent to me by Lucas's teacher of the deaf. I read it on the plane to and from California, reading the chapters that were interesting to me, and skipping the ones that were not. It's called Not Deaf Enough: Raising a Child Who Is Hard of Hearing, by Patricia Ann Morgan Candlish.

Although Lucas is certainly deaf enough, this book gave me some valuable perspective, especially about the struggles of kids whose hearing loss is not profound, but still considerable. I thought about Nolan a lot while I was reading the book, and also about Ava, because she lives in Canada, as does this mom.

The book has very little information on cochlear implants, like seriously 2 pages. But, it was more about the struggles of raising a hard of hearing child, than the specifics about the amplification. Also, the book was copyrighted 1996, so CIs were still pretty new then. That was probably the only downside to the book, that it does not have up-to-date information. But the struggles of the family of a hearing impaired child span across the decades.

Chapters 15 & 16 were really interesting to me. Chapter 15 is titled Not Deaf Enough, and talks about society's misunderstanding of mild hearing losses. I felt like I could almost relate, because although Lucas has a 110+ dB loss unaided, with his CI he has a 25-35 dB loss, which puts him in the mild hearing loss category, aided. Even though he can "hear" well with his CI, it's certainly not perfect, and I'm sure that he will face much of the same struggles as a child with a mild loss.

She quotes Carol Flexer, a well-known audiologist, in this chapter: "A child with a mild/moderate hearing loss, or a child who is wearing a hearing aid which in not coupled to an FM unit in the classroom, may appear to hear just fine. However, in reality, the child may hear the teacher's voice and intonation patterns, but may not hear individual speech sounds clearly enough to differentiate one word from another. Words like 'ladder,' 'leader,' and 'little' may all sound the same to a child with poor intelligibility. Yet, if the teacher were to ask the child, 'Do you hear me?' the child would likely respond, 'Yes.' One would not expect a young child to answer, 'I hear your voice, but I can't hear the unstressed linguistic markers of plurality and tense; nor can I hear articles, voiceless consonants, or new vocabulary words clearly enough to distinguish from other known words.' Yet, educators are surprised when this same child evidences a lack of vocabulary, a poor intuitive feel for linguistic structure, and trouble keeping up with the 'slow' reading group." (1989)

I thought that was interesting detail to share with those who might not quite understand the complexitites of hearing loss.

Chapter 16 is titled: A Parent's Consideration of Sign Language and Speechreading. She gets into deaf vs Deaf, and how she doesn't feel welcome in the Deaf community, because her son is not exactly deaf. She also makes a very interesting remark about the auditory/oral education debate. "These Deaf people are blaming the auditory/oral education of today for the failures of the past when hearing aids and amplification devices were barely out of the Model-T stage; there were no public school preschools or parent/infant programs. The schools were not even required to try and provide an education for children with disabilities. The improvements in quality of hearing aids and other amplifiers in just the past few years have brought them from the level of a Model-T Ford to a Rolls-Royce." And she wrote that 13 years ago! Now we're talking a Lamborghini. She goes on to say that "peace might come in the next generation." We can only hope.

The book is worth the read, or skim, if you will. In the back she has about 30 pages of "useful tips and thoughts" that I got a few ideas from. I'd actually love to read an "update" about how her son is doing now, probably in his late teens.


Ambulance Mommy said...

I've got to check this one out....

I feel constantly like I'm intruding on a world where we might not fully belong. "He hears in one ear, so how bad can it be" is the instantaneous reaction of everyone. I spend hours explaining how he can't sort noise correctly, and how he might hear, but he can't sort out background noises to distingush certain things...

The phrase Not Deaf Enough is just something our family feels all the time. Does the book offer suggestions for families?

Right now I'm reading a great book whose title escapes me. I should do a review on my blog. It's about raising spirited boys, and how to appreciate their energy and enthusiasim, and steer them in the right direction of how to use that energy.

Julia said...

You make the interesting point that with CIs, our kids go back to being in that "not deaf enough" middle ground. People are going to assume that the technology restores perfect hearing, and we'll have to teach them to advocate for themselves just like kids with mild or moderate losses. Ben hears amazingly well in a quiet environment, especially with us, because we've learned to speak clearly and meaningfully to him. But he is definitely less responsive in noisy environments, so there will be challenges ahead.

leah said...

I'll have to check that book out! The author has a website at that I just found.

The range of hearing loss is so great, we have a little guy who is moderately severe to mild, depending on the frequency! I am interested to see what their experiences were, even though they are in the past by 13 years. The social situations and self advocacy are the same across the board- neither hearing aids or CI's restore perfect hearing.

If teachers and others who work with our children understand the problem areas (noisy situations, reverberation, etc) they can help mitigate them.

Love, love, love the Carol Flexor quote!

Tara said...

Interesting, I'm going to have to get this book for both my child and myself. with aids, I'm still in the 30-35 dbl loss range and I have exactly the same problems understanding people even though I'm completely fluent in English and didn't even have a loss until 18 months ago. I always forget that our CI kids are still dealing with a mild loss all the time, that was a great reminder.