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Dirty Laundry Blog by Jennifer Hynes

  • Least Restrictive Environment

    March 25th, 2019

    Least Restrictive Environment

    Over the weekend I started reading a book all about IEP’s and the laws that govern them. I also read some court cases concerning Deaf/HH kids in California Public Schools. My brother is a lawyer, but he practices advocacy for the Oakland Homeless population and his girlfriend is studying Law at Harvard, her practice is working with inmates, especially Juvenile offenders. Karen, my brother’s girlfriend has the most experience with laws concerning disabilities. They have forwarded me some cases to read about Deaf Kids in public School and their moms trying to get services like interpreters for their kids. Danny and Karen understand the struggle Fiona will be going through as she gets older.

    This piggy backs on my conversation with the Deaf/HH advocacy lawyer last week. This person is a soldier for equal rights of special education recipients.

    When I woke up this morning, I realized that the reason it feels like I’m hitting my head against a wall is because I really am. I thought Least Restrictive Environment meant the environment Fiona would be able to understand everything that was being taught and have a good chance at understanding what the other kids were saying. But that’s not what LRE means, it only means that Fiona’s mainstreamed, which is part of LRE, as opposed to being in a class separated from typically developed kids. LRE means that she can function “good enough”, that she hears or understands most of what’s being said and that she can pass her classes. Fiona gets just enough to function in a mainstream classroom.

    I thought Least Restrictive Environment meant she had exactly what she needed to perform optimally. The classroom Fiona is in currently is an optimal setting for her. It’s a small class size, it’s taught by a teacher of the Deaf/HH, everything that’s said in the classroom Fiona has time to confirm she understands or ask the information to be repeated, even with her peers.

    Yesterday our family went on a hike around Bon Tempe lake. It was the longest hike yet for our kids. We were sitting on a log and Alan said look at the Blue Heron. Fiona was right next to Alan, it was super quiet, and Fiona said “What”. Alan’s face was turned slightly from Fiona. That’s all. Just a slight turn. I tried to explain what Alan said but I had a bit of food in my mouth. Fiona didn’t understand. I had to finish chewing to explain. This happens ALL the time. I am assuming even when the teacher or another student will be using the FM system this will be the case. The slightest turn of the head for example, or last night at story time I said something, and I was laughing a bit, Fiona couldn’t understand me.

    I thought LRE in a classroom would take these limitations my daughter has into consideration and try to accommodate her needs. But now I know this is not the case.

    I truly believe the schools expert is inline with my thinking. I feel she is an advocate that has been working for the rights of the Deaf/HH community just as long as the Advocate Lawyer I spoke with. I believe her initial recommendations were truly trying to create a better than LRE that the law requires. The expert knows the limitations in understanding what people are saying Fiona has. The expert knows that the only way to teach LSL is in a super quiet environment. But the expert was asking for accommodations that are possibly above what is normally given as services in a special ed students IEP.

    My goal from the start was to get Fiona set up to have the best education she could get, on par with her bionic hearing brother Jack. And as I’ve said, I know how to do that, I know what conditions Fiona can hear and understand in and what conditions she can’t. The expert knows this, and maybe even some on the IEP team know some of this.

    In some ways I wish I would have been more familiar with LRE, IDEA, and the laws around IEP’s before I started this process. I wish I would have known the bar was set low for my daughter, that “being fine” and passing her classes was the goal. Not creating a perfect learning environment for Fiona. How could I even expect that for one little girl? The stress, insomnia, depression, this whole process has caused really sucked. But maybe I had to go through this one way or another. Maybe the reality of life and the hard life Fiona is going to live had to be learned. I think even though, like I said this process totally sucked, good things have happened. My family is closer than ever. My husband is on my side about living local, and he’s going to take a sign language class in the Fall!

    So, at the end of all of this, all these ideas, all of this research, I understand why I never feel aligned with my IEP team, or the school district. We are at different ends of the spectrum. The IEP team, the Special Education Department are doing their job and I’m doing mine, just as we should be.

    It is my job to make sure Fiona can reach her full potential, just like any parent.

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  • Hitting My Head Against a Wall.

    March 21st, 2019

    I feel like I’m hitting my head against a brick wall. It’s uncomfortable, I back off and try to make things easier. I look at the other side of things. I ask questions and read about both sides of my arguments. Or are they ideals? The brick wall gets too hard and I wonder if I’m being too idealistic. I wonder if I’m making my decisions based on my ideals. That’s how I give myself a break from banging my head against the wall, I self-deprecate. I tell myself I’m crazy or over-thinking situations. Or that I’m wrong about what I think is true. I’m wrong. Then I cry, I stay in a perpetual state of mild depression. Always a bit of sadness. I escape with the moments I’m dreaming about my garden, spending time in the yard with Jack and Fiona when they get home from Kindergarten. Or walking along the sidewalk, saying hello to our neighbors. My fascination of us all learning sign language, my whole family, so Fiona isn’t obligated to where her hearing aids day and night. So, she can still communicate, but have breaks from the horrible amplification, every sound competing for the other. Fiona keeps saying, “I can’t hear your voice” or “I can’t hear my voice”. This morning I finally understand what she’s talking about. I was using my listening tube to check her hearing aids. I was around the corner from the T.V. but I could here the sound from the T.V. like it was coming right into my ear. I walked over to where the T.V. was. I asked Jack to say something to me. It was hard to differentiate his voice from the T.V. I know it sounds different for Fiona because she has at least half the ability to hear than I do. But that’s hard to quantify because Fiona and I hear differently.

    Recently a battle about having my twins together in the same classroom has sprung up. Even though there’s tons of research and I’ve recently gathered personal experience from all the twin moms and educators I know, that twins together isn’t always bad. I thought to myself yesterday, if I’m wrong and I mess up my kids by keeping them in the same class in Elementary school, I promise to send them to therapy. If I am making a huge mistake by wanting my daughter to learn sign language and wanting her to have an interpreter in class, I guess that’s just going to happen. I was told that Fiona will just want to fit in and that having an interpreter will make her feel different. I don’t see why this is an issue, Fiona is different, and she needs to have access to the same experience all other children do, the only way to have this is that everyone that talks to Fiona knows how to talk to people who are Deaf/HH. That means the whole Kindergarten class. Fiona should have the right to access language without technology, even socially. One way to do that is use sign language.

    I can’t explain a lot of stuff about having hearing loss, there are things I think only people who have hearing loss can understand, and things people who live with a person with hearing loss can understand. Yesterday I heard Fiona ask Jack what over and over again and finally Jack got frustrated and gave up. It was only the two of them and me in the house, I don’t even think the T.V. was on. I may have been cooking or cleaning in the kitchen. For some reason Fiona just could not understand what Jack was saying. And Fiona can understand a lot of what Jack is saying. Last night Fiona and I were sitting on the couch, right next to each other. I had food in my mouth, Fiona asked me a question, I tried to answer but she couldn’t understand what I was saying because I had food in my mouth. I was talking differently. These are in relatively, quiet, environments.

    There’s a big emphasis on the F.M. system. An extra amplification system from a speaker straight into Fiona’s ears, this “fixes” the problem of deciphering what a speaker is saying from the background noise. This is great, I think? I need to talk with a Deaf/HH student to find out what it’s like, someone older than Fiona. I ask her but she can’t explain it yet. I would never say that I don’t think Fiona should use an F.M. system, she would have to tell me she didn’t want to. But I also don’t know how good it is. Is there still interference? How quiet an environment is ideal? Is it still hard to decipher certain words like it is when Fiona is only wearing her hearing aids? The only person who can answer these questions is Fiona. But she’s still too young. I need to make the decision for her. But there’s a whole team of people putting in their input. People who do not have formal training with Deaf/HH people, they hire experts. Which is fine, but there’s always bias. There is major bias against sign language. There is no support for sign language once Fiona leaves Preschool. There may be an interpreter, but it’s not total communication. It’s better than nothing. I will be dedicated to teaching Fiona and the rest of my family sign. We are all going to take lessons together, I’ll keep studying with the SEE Center, and I will use sign way more at home, and practice way more once I get my head above water. Once I’m not having insomnia, stressed, obsessed about this conflict I’m involved in. It’s intense entering the public-school system. Time to go to my studio.

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  • Mainstreaming

    March 18th, 2019

    Mainstreaming

    Fiona woke up late this morning. I woke her up, usually I put the hearing aids in her ears immediately, but this morning they were no where to be found. I looked and looked and couldn’t find them anywhere. I used my signs, bus, breakfast, shoes, socks, now, unable to make clear sentences. Barely able to explain to Fiona everything that was happening, everything I NEEDED to tell her, everything she NEEDED to understand. But we did it, slowly but surely. The bus had to wait twenty minutes for us. Jack was an hour late to school. I told the bus driver Fiona was totally Deaf this morning. I called the teacher and left a message about the lost hearing aids. But I knew Fiona would be O.K. today. She is still in her Total Communication class. Everyone uses sign language. They use all the tools to communicate with children who are Deaf. I knew she was in good hands.

    I had just agreed with my school district to start Kindergarten without a sign language interpreter. Just Friday. I thought maybe the “other side”, the “Oral Only” was correct. Maybe Fiona will do fine without an interpreter, just using the FM system and all the support from training the teacher and classroom visits by someone trained in the auditory/oral method. I trust all of this. I believe everyone has Fiona’s best interest at heart.

    I have new questions today. Something always happens that makes me remember Fiona is Deaf. She uses her hearing aids beautifully. She does the best she can and always tries harder. But when she’s not wearing her hearing aids or there’s excessive background noise or there’s more than one person talking, Fiona has an extremely difficult time understanding what is being said.

    I feel like my whole family, Jack, Fiona, Alan, and me need to be fluent in sign language. Signing Exact English now, and ASL in a few years. We can’t rely on the hearing aids or there will always be GAPS in Fiona’s world. Ideally as many people in Fiona’s world, including her classroom are exposed to as much information about communicating with a child who is Deaf as possible. I think she needs an interpreter.

    I was told again by a school official that they thought if Fiona had an interpreter that it would make her stand out more, that she won’t want the attention drawn to her. This philosophy is popular, that when kids have special needs and are being mainstreamed that they “fit in” as much as possible. Because I care so much about Fiona’s psychological well-being, I am trying to take heed of this advice that several people who I respect, and trust have given me. But then something happens, like I can’t find the hearing aids and Fiona can’t understand and things get difficult and scary.

    Part of me thinks this idea that mainstreaming means your kid just blends in with all the other typically developed kids is dangerous. It seems like instead of making the child feel more connected to the group the child could potentially feel more isolated and alone. Isn’t it like an Elephant in the Closet?

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