Questions about Listening and Spoken Language/ Falling in Line
“Just bring the ones you want to play with” I say to Fiona.
“What” she says.
I realize my back was turned to her. I turn around and say it again. We are bringing stuffies upstairs to play with. Fiona has a cough and she’s still only wearing one hearing aid still. I’ve been waiting for the new molds to be ready and hoping that Fiona will start to wear her hearing aid right away and everything will get better, as far as Fiona understanding what people are saying.
Last night I studied a handout given to me about hearing from one of Fiona’s teachers. It said:
“A hearing aid must be fit immediately after a “doorway” problem is identified; delayed fitting of a hearing devices causes auditory deprivation that can permanently impair neural function” and it goes on to say, “If an appropriately selected and programmed hearing device is not worn every waking moment, the child’s brain will be deprived of auditory information and their cognitive developmental;/learning will be compromised.”
According to this, Fiona will have some catching up to do when she finally starts wearing both hearing aids. But this information raises many questions for me.
First, I am finally understanding there really are two different worlds, and probably more than that, of deaf/HH. The one I received this handout from is the LSL world, “Listening and Spoken Language”. I have studied Total Communication, which uses LSL, but also uses Sign Language, which I’m constantly struck by the fact that sign language is language.
My questions about the above statements taken from the handout, and the whole philosophy of the LSL method only are first, should there be a back up method for teaching Deaf/HH children? If it’s true that when the child is deprived of auditory information, this could be caused by the case I’ve been in, my daughter had an ear infection, my daughter would not wear her hearing aid for months, I had to get new molds, but had to wait for months until the ear no longer hurt to get the molds made, then I had to wait for the molds. Wearing one hearing aid is a lot different than wearing two. Fiona has struggled to understand what I’m saying, I must repeat almost everything I say. Thank goodness I have been studying sign language and I have used it along with other Total Communication techniques to explain things to Fiona or just communicate with her. The LSL method does not include sign language in any form. So as the child’s “Cognitive development” is being compromised because of hearing aid issues I am curious what is the recommendation of the LSL community? Is the child to not have language or teaching or learning at that time? Because if a deaf/HH child can’t wear their hearing aids then they can’t understand what is being said.
My next question is, even when the hearing aids are fitting properly, worn properly, but the environment is not proper. There is excessive background noise for example. This is the time an FM system could be worn, and effective I’m sure in some situations. But there’s been no discussion of psychological fatigue by the child. There are many, many situations we have been in where it’s loud, for example:
-Rebounds- a place for kids to jump on trampolines.
-The Santa Rosa Children’s Museum, or other kids’ museums
-Playdates or at home when everyone’s talking at once.
These environments are difficult for a deaf/HH child. I’ve asked Fiona if she wants me to wear the FM system and she says no. Sometimes she will take her hearing aids off because she says it’s too loud but then she will immediately put them back on. Fiona doesn’t want to not hear. These are times when sign language is appropriate and extremely useful. What solutions does the LSL community suggest for these situations? Again, I would pose the question, is it accepted from the LSL community that Fiona just doesn’t get any language or communication during times spent in loud environments such as these? Is it acceptable that Fiona can not understand what I’m saying so I can’t talk to her at all? Maybe she can read my lips? Maybe she can get 50% with her hearing aids? Is that good enough?
Fiona is exhausted in these situations.
In the handout it also talks about the “Importance of wearing devices during all waking hours-delivering auditory input child’s brain.”
This is not possible in these situations: In the bath, at the swimming pool, anywhere there’s water. My question to the LSL community is what is your suggestion at these times? Why would the LSL community be OK depriving deaf/HH children to language at the pool? When there are VERY important things for a parent to tell their child when spending time around water. Even at the beaches here in Northern California, we don’t get in the water but with the background noise from the waves and the wind Fiona has a hard time understanding language. Maybe an FM system could work at the beach, I haven’t tried. But maybe Fiona doesn’t want that extra noise in her ear? I do not know. I will have to experiment. But these situations are perfect for sign language as a back up method of communication, teaching language, and just plain safety.
I feel like Fiona is always struggling to hear. It probably seems worse now because she’s only worn one hearing aid for so many months. I feel like the perfect conditions need to be met for Fiona to understand, and this is not life! I am used to repeating everything, always reinforcing what I say, with more explanations/sign language.
As I read through the handout again last night, I understood it more than I did the first time I got it. But I do feel like the way LSL is presented to me, as a parent, is that it’s my fault if my daughter is not using the technology correctly, meaning if it was worn/used correctly she would hear better and learn better and develop a “Hearing Brain”. That if there are issues it can be fixed with technology. That there should be no reason for the technology not to work if worn and used properly. That it’s the fault of not using the technology correctly that my daughters “brain is not developing correctly”.
I feel like there’s a very strong line drawn between the LSL community and the Total Communication community. I know there is even a line between the Deaf community who choose to use ASL and do not use amplification devices. I do not have much experience with the Deaf community but would like to. I think it would be a positive experience for my daughter to become acquainted with a person who chose to use ASL. I don’t find it healthy to have these divisions in the Deaf/HH community.
This morning Fiona woke up and still has a bad cold and cough. I’m not sure she will make it to school, and the worst thing is her major, annual, hearing test is on Wednesday. If her ears are blocked up, I must postpone the test again. This will delay the hearing aids being updated for who knows how long. It sucks.
I’ve decided I’m not going to fight for an interpreter for Fiona in Kindergarten. I don’t have the energy or the fight, I am going to rely on the hearing aids and FM system. I am very stressed about all of this. I feel like I’m in a very uncomfortable position. I must pick a school, but my choices are limited. I feel like I’m a burden or pain in the butt already. It is not easy.
My IEP is scheduled for this Friday. I’m not looking forward to it, I feel like I’m already on the defensive and that’s not good. I read over my IEP from almost two years ago when I wanted Fiona to continue at Early Start. I had the same concerns in that IEP written under the parent summary. The school district wanted me to put Fiona through all the tests and evaluations she went through then, this time, in order to access an interpreter for her Kindergarten classroom. Since we’ve been through this before, and I know that Fiona will pass the tests and according to the tests she won’t qualify for an interpreter, I decided to not fight it at this time. Two years ago, the recommendation was that Fiona go to a mainstream preschool. I went and visited some and realized quickly it was a terrible idea for Fiona, she needed to be in the Early Start program. I made the right decision. I was going to integrate Fiona into a mainstream classroom this year, to get her ready for Kindergarten, but with the ear problem I haven’t done it. Sometimes she does drop in’s at Jack’s school. When I drop her off kids will talk to her, I ask her what they said, and she doesn’t know. I’ve asked her if she can understand what the teachers and kids are saying at Jacks school and she says no. But Fiona has fun anyhow!
I know I’m just one out of many, in the school Fiona will go to she’ll just be one out of many. I know we have limited resources in public education and that there is not a school for Total Communication or a class. I know that mainstreaming is important and ideal. Most of the moms I talk to are so much more confident in their children’s ability to hear and access language. They are fine with the FM system and the Listening and Spoken Language model. They have not voiced the concerns about their child not hearing well with background noise or when they are at the pool. They are not interested in their children learning sign language.
I will still teach Fiona sign Language and study sign language myself. We will still use sign language. But for the immediate future I will fall in line with the other parents and as far as Fiona’s Public-school experience is concerned, I will conform to the LSL model. I will revisit this, having an interpreter in class if Fiona expresses interest.