Last night I see the moon, it’s big and bright. Beautiful. I have put the babies to bed and finished cleaning up. I’m relaxing on the couch, reading and writing in my journal. Now I am sitting at my desk writing. It’s been two days since I wrote the first sentence. Since then I’ve been in a world wind of politics and the rights of children who are deaf and hard of hearing. I’ve gone through and am going through so many emotions. Fiona has the right to learn and use sign language regardless of what the standardized tests say. See how that just jumped right out there. I am so mad, I just want to rebel against standardization! Nothings even happened yet except some conversations with representatives of the San Rafael School District and I’ve visited both public programs. I’ve had the recommendation to mainstream Fiona and to only do oral and no sign. This upsets me; when Fiona was born, and we found out she had a moderate hearing loss we were presented with a packet of information about deafness in children. (I will refer to people with any degree of hearing loss as deaf, that is what I’ve noticed in many of the books I’ve read) Anyhow in this group of information I was presented, the first question to answer is, “What mode of communication is best for your family?” I answer “Total Communication” right off the bat. That is using sign, speech, visual, the right environment, amplification, everything. I had to convince Alan though, he thought she was fine, that she could hear well enough, that she could rely on the hearing aids and didn’t need to learn sign. It took a long time for me to convince him it was important for our family to become fluent in sign. But today he gets it. I feel like the school district downplaying Fiona’s need to learn sign, both SEE and ASL, is stripping her of part of her identity. She’s also being put in a hearing world and expected to perform like a hearing child, at three years old. To deny her of a program that is designed for children exactly like her, her best chance at success going forward in the Public-School System, seems unjust. I am in the heart of politics, real life politics. I feel ashamed, I never read the Deaf and Hard of Hearing Bill of Rights until this weekend. And if they are trying to cut costs that’s really not fair, we pay over $14,000 in taxes to the San Rafael School district, we have paid over $80,000 in taxes in our lives together before we had any kids in the system. They’ve gotten enough money from us to send Fiona to an appropriate preschool for two years. I get it now. I understand what we’re fighting for.
Month: February 2017
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“I’m going to get the mat, it’s in my room” I say. Fiona repeats “The mat” several times. She doesn’t have her hearing aids in. I try to sign “I’m going to get the mat” to her. I don’t know the sign for mat, but I know the signs for “I’m going to get”, it works. She understands and stops saying mat. (It’s a bath mat, this clarification I will make next time). This is another example, why I want Fiona and my whole family to know sign. It’s moments like these that will come up over and over again. I realize something else at the same time, how much impact I have with my daughter at home; reconfirming my commitment to be fluent in sign language and to use it all the time at home. We had a meeting and visit to one of the programs in the San Rafael Public school system yesterday. It was really great and I really like this woman that we are talking to, it felt so good to have a deep conversation with someone about education, I learned so much, and one thing I learned is the San Rafael School district does their homework! They care about the kids in their programs and take placement seriously. They shared Fiona’s evaluations and audiogram with a specialist for the deaf and hard of hearing, this lady is apparently one of the top experts in this field, which is pretty cool. She feels strongly that Fiona should be mainstreamed as soon as possible. I guess I can say this, Fiona is amazing! She doesn’t fit into any special program the district has to offer (but she will continue to get one on one speech and language support through her life at school). She gets to attend the special school that I wanted her to go to, for five months, but then I am encouraged to sign her up for a regular preschool. I was told that right now she needs to hear language from peers, as much as possible. The good news is I learned the whole process is super fluid and we will re-evaluate and can change direction if needed.
I was so happy after the meeting. Our family had a great day, we had sushi, Jack and Fiona were well behaved in the restaurant. We got smoothies, watched Caillou together, Jack and Fiona rode their bikes around in circles in the living room, Fiona and I drew together, I love that. We sat on the floor and pet Billy, Fiona said how much she loved Billy, “I love her ears, her whiskers, her paws are so cute”. I realized Fiona was petting Billy where I put her tick medicine. “We need to go wash our hands” I say. Fiona and I go to the bathroom and wash our hands, but there’s no towel. We go to the kitchen, “Get a towel out of the drawer” I say. Fiona repeats back, but she’s saying Door. I say Door and Drawer several times, but I can’t figure out how to explain the different sound, it’s so subtle. I go to the living room, “Jack say Drawer” Then I ask him to say “Door”. He does, I have confirmation, Jack understands the differences in the two words, Fiona does not. I grab a piece of paper, (My visits to the different school programs have served me well) I draw a drawer and write the word, I draw a door, and write door. I show Fiona. We walk to the front door, then back to the kitchen. We examine the two, she practices saying both words. Then I take it further, there’s a back door, a front door, a bathroom door, ect. She starts showing me, pointing at doors around the house, running back to the drawers in the kitchen. I throw out the word Cabinet Door, but decide to save this for next time. I didn’t’ use the signs, I will add them next time. I realized something else at this moment, I am Fiona’s teacher. School is supplemental. Which also made me realize if I’m doing sign at home, and practicing with Fiona she’ll learn it. Will a teacher in a mainstream school know when Fiona doesn’t understand things because she’s not hearing properly? I don’t know. But could she thrive under the advice I received yesterday? That she needs to be around kids that have lots of language as opposed to kids who also are deaf or hard of hearing that do not use very much language? It makes sense, but it also makes sense that I need to keep up my end of the deal. I am her ultimate teacher. I want her to grow up with “Total Communication” this means oral and sign. In the fall, if she’s mainstreamed she will be getting the oral at school and the Total Communication part at home. It’s exciting Fiona is doing so well, and the other exciting part is Jack and Fiona can go to school together. Jack has been very upset lately knowing they were to be separated soon!
Aww! I can relax now, (well except for finding a preschool program!). I feel a sense of relief. Selfishly I feel proud of Fiona for doing so well and glad that Jack and Fiona will be chugging along together in their education journey, that there won’t be as much distance, I won’t need to put on two totally different hats, one rearing a typically developed child, one rearing a child with special needs. It’s going to save me a lot of energy. Today is my day off, I have a babysitter! I get to work in my studio. I’m so happy. I do have a MAJOR mess in the house though, toys everywhere, laundry needs to be put away. Grocery shopping needs to be done, I need to take Billy to the vet to get her splint off. Ugh, I guess I don’t have much time for my studio!
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I don’t mind if you watch TV, this thought flashes through my mind as I sit at my laptop. But I don’t turn on the T.V. yet. “Mama, look at this” Jack says. He’s playing with a cement truck with flashing lights. It reminds Jack of the Trucks outside working on the road in the dark with flashing lights cleaning up all the mud and dirt from the slide. It poured all night long, buckets of rain. Fast streams flowing down the hills all day, the creeks full to the top. The air warm, tropical. The moister feels good. I sit with Jack and Fiona on the couch, I don’t write. I read books, feed them more food, read more books. We’ve had an eventful day. Fiona is in the process of being transitioned into a preschool program for kids with special needs. (Is that how I should say it?) I don’t know, it’s so confusing. We have evaluations, school visits, meetings almost every day, calls to answer, calls to make. I am one step closer to the San Rafael Public School system; It seemed like this time was so far off in the distance and now here I am. Jack and Fiona are changing a lot. The most notable development is after months of being totally potty trained, they no longer are. Fiona pee’s her pants and says she’s scared to go to the bathroom and Jack pee’s on walls and inside containers and poops in his pants. This is when we are all together, meaning I am totally available to assist, turn on lights, hold their hand going to the toilet, whatever they need. I try not to react when these accidents happen for fear that they will want the negative attention. “Undue attention, Undue demands”, I read about this in a parenting book last night and want to tattoo it on my arms. I can see where I have fallen into the trap of giving too much undue attention, especially in my conscious effort to always make sure I’m praising both babies equally. I can see how this has led me down a path of Jack and Fiona making “undue demands” on me, and I fall for it to avoid the whining and leg grabbing and all the other annoying behavior a three-year-old displays when he wants something. Today my mantra is “I will not tolerate Undue Demands”!
The windows are specked with rain drops, the sky grey morning dawn. It’s 7:08AM now. I just heard Jack call for me. I am drinking my too sweet coffee, enjoying my morning of solitude. I haven’t read or watched the news today, what’s the point. I just want the nightmare to be over. I want Trump and Pence impeached and Devos, Sessions, Tillerson, Bannon, the Alt Right, gone. Can’t we find an Island to drop them all off on? It’s awful they are in power of America. I am going to focus locally now. The wind is blowing outside. I will miss the rain when it’s gone. Just like I’ll miss Jack and Fiona’s chubby little hands and cute round faces. Now I hear Fiona awake. Time to make their breakfast and go to school. I hope I have time to work in my studio today, I started some pieces yesterday that I’d like to work on. I also want to start some more large canvas paintings. Life is good. It’s gonna get better too after I institute my new mantra to live by, “I will not cave to undue demands”.
Dirty Laundry Blog by Jennifer Hynes 