Jack is watching u-tube on the T.V., some monster truck thing. Fiona is watching a unicorn video on my i-phone. This is the second time I have let my kids, Fiona being the only one so far, watch u-tube on my phone. The reason this happened was because yesterday I downloaded Care Bear ASL for Fiona. She loved it until she went on u-tube and found a dress up unicorn thing. Super annoying. She likes it though. Today was difficult in kid land. Jack said he was tired and didn’t want to go to school. I needed to do yoga so I made him go for an hour. The whole time in yoga I thought about Jack. I worried the teachers were calling to tell me he threw up. I imagined him lying on the couch in the office. I tried to breath and stretch during my downward dogs and child’s poses, but felt stressed still. When I picked up Jack after yoga he looked fine. He was playing with friends and the teacher said he acted normal all day. After we picked up Fiona Jack said he didn’t want to go to gymnastics, he was too tired. Fiona cried. She was so upset. I thought it was unfair, that Jack could have just sat quietly by me and waited, while Fiona did gymnastics. I thought, he must be very sick. I parked the car at home and Jack said, “Tricked ya”.
I said, “What?’
“tricked ya, I’m not tired”
It put me in a bad, but withdrawn mood.
I also can’t stop thinking about Fiona and CSD. I got several responses from the paper I wrote from people I shared it with, and I talked to all Fiona’s teachers and my close friends and relatives. Not everyone, I haven’t had an in-depth conversation about it with some people who are very close to me. Some people said absolutely not to the idea of Fiona going to a bilingual school that is an hour and a half bus ride. But some people said do it! I am worrying, spinning, but I acknowledge I do this with big decisions. I never expected to feel this way. I was unhappy with the large class size here when Fiona’s mainstreamed. I was unhappy with the lack of sign language. If she stays here, I have to build in sign language lessons somehow. I still feel like it could be part of her public education because she legitimately needs to learn sign language. The hearing aids are great a percentage of the time. But there is a lot of time they don’t work well. In noise, in water, when her ears are infected, when a word is too hard for the speaker to say verbally so that Fiona can understand it. This is my experience.
I worked so hard on my IEP, and I was feeling free. Now it’s like I’ve been kicked back a hundred feet. I’m going to let Fiona make the final decision though. I have a date for her to spend a whole day at CSD this summer and she can start her neighborhood school in the fall, then Fiona will be able to verbalize what feels best, I hope. She’ll still be young. I wish I had my own expert to do an observation of Fiona in both places. Someone totally experienced but totally unbiased. Education is a trip! I can’t believe it’s hitting me like this.
The first battle was the local school fight. The Great Schools battle. The segregated school surprises. Realizing that some of the liberal democratic people I know and live by are perpetuating systematic racism by following web sites like Great Schools and not doing any research into the systematic racism of American schools. Then driving their kids’ miles away from their home to the whiter public schools, charter schools and private schools. This has all been a shocking, mind altering, depressing, learning period for me.
I stated that the most important thing to me was for my kids to go to our closest neighborhood school. Then I saw a perfect classroom for Fiona a million miles away. A quiet learning space where she will have the best chance at communicating with her peers and learning with a teacher trained to teach kids just like Fiona. Plus, she’d be bilingual. I wish Jack could go to a Spanish bilingual school, or ASL. It would be so cool for Fiona if Jack learned ASL. He said he will. He’ll have to learn with Fiona. Even Fiona’s best friends need to learn because at the pool Fiona and her friends can’t talk. They can’t play how they want to. They want to play imagination or with mermaids and they keep saying stuff to each other, they talk louder and louder, they yell and try to understand each other. Then Jack starts doing it, then me, then everyone’s just talking louder and louder and no one can follow anything that’s being said anymore. And we all go quiet for a moment. The last time I convinced the kids to get out of the pool and put back on their hearing aids, so they could play. It’s the same for the girls in noisy environments. Why am I stressing about this? I gotta stop. Fiona’s best friends will need to learn sign too if they want to communicate in all the places that hearing aids don’t work. But the schools so far away and she might not like it as much as I think she will.
“Fiona, you’re horrid, horrid, horrid” says Jack from the living room. A few minutes ago, he went and tried to grab an electronic stand that Fiona has the iPhone on. Sometimes he can be awful.
And every time I say something to Jack Fiona says, “What?”. I tell her what Jack said and what I said.
I must turn off these u-tubes. I’m going to go crazier. Tomorrow is a studio day. I can not wait to paint.
Tag: life
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How do I even begin? I feel great relief, a sense of freedom on my horizon. I finally finished the process of deciding Fiona’s education plan and feel like I’ve received the information I needed. I feel like I’ve made my decisions as best as I can. It’s been intense. As intense as it was for me when we were trying to have a baby. To make decisions I’ve had to make concerning my own fertility and now questions about Fiona’s Hearing Loss. I’ve had to dig deep down inside myself to answer ethical questions, process science and technical information, try to understand life through Fiona’s experience. Every decision has been a smorgasbord of questions. I’ve had to read so much, do so much research, talk to so many people, ask so many questions. I feel like even my transition to veganism has intersected with the big questions I’ve had lately. The question about sending my kids to our nearest school, even though Jack and Fiona will need to be in the same classroom because there’s only one Kindergarten. I feel so strongly with living local, getting away from my car, walking and riding bikes through the neighborhood. That outweighs the risk of having twins together in the same classroom. Many questions about myself, how I got to a position of high cholesterol and on a road to heart disease have come up. Thinking about my mom. I was at Target the other day. I didn’t feel amazing, and I was getting the kids ice cream. I saw some Vegan ice creams, I wanted some, but when I checked the nutrition label, they had more fat and sugar along with artificial stuff than the dairy ice cream. I decided I would skip it, but I got the kids a pack of It’s It, the kind with three in a box. I wanted one so bad. I struggled with the decision for hours. I finally decided, NO I’m not eating one or anything like that. The moment passed. The next day I felt so proud of myself. I recognized a feeling, where I felt sick and depressed and wanted something soothing, like a sugary fatty treat. I almost gave in, but I thought about how healthy I’ve been eating, how I haven’t had a processed food like an It’s it for almost three months. I did have vegan Ice Cream and A vegan Chocolate Brownie and a Vegan Chocolate chip cookie in the past three months, but they all came from super organic fancy local shops. I started eating Falafel again too, I hope I can get away with that one. I just love Falafels, hummus with olive oil and Tahini! It can’t be that bad, right?? We’ll see when I take my next cholesterol test. I constantly am faced with my mom’s death and being an older aged parent. I’m going through menopause with five-year-old twins! Sometimes I wish I was young. But sometimes I don’t. The things I just went through were intense, I wouldn’t want to go through everything I’ve been through again.
This is a good place I’m at now. I’m ready for phase two! Getting back to a regular yoga and mediation practice. Getting back into my studio and creativity on a more frequent schedule. I’m excited. I’ve learned so much lately about myself and knowing what’s most important to me in my life. I am closer to the person I want to be.
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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?
Dirty Laundry Blog by Jennifer Hynes 