I went to Fiona’s IEP yesterday. Everything went smooth, she was offered the same services as she received last year, attendance at a Total Communication preschool and speech therapy. Fiona is right on track with most of her language skills. She’s having trouble producing letter combinations of letters she can not hear, which is normal for children with hearing loss. They must memorize how to make the sound through speech therapy, the hope is that they will eventually know how to make the sounds. I asked if it will be easier to do once Fiona can read and they said “definitely”. I mentioned Fiona attending a typically developed preschool a few days a week next year to prepare her for kindergarten and the representative from her school district thought it was a great idea. I said, even if Fiona can’t hear or understand a lot of what’s going on, I was reassured that it was still beneficial, socially and to prepare her for kindergarten, the hearing world. I had forwarded the piece I wrote about Fiona and my upcoming IEP to the meeting attendees. They commented they were surprised I had so much anxiety about the IEP. They assumed I assumed Fiona would get the same services again. I didn’t know. After I left the meeting I realized Total Communication wasn’t brought up many times, and when it was I was the one bringing it up. I didn’t have a chance to gloat about my graduation from the beginning series of sign class and that now I’m an intermediate signer! I am so glad I was introduced to sign language and that I had the opportunity to take a great class. It’s the best way to fully communicate with Fiona, using both sign and auditory. I realize they are preparing Fiona for the real world, and they do train teachers in mainstream class rooms how to best teach deaf and hard of hearing. The class room experience is adjusted to make it as optimal an environment for a child with hearing loss as possible. And I know in the real-world people won’t know sign language or that they must get eye contact with Fiona for her to understand what they are saying. Fiona misses things, constantly. I wonder, why should she have to be in a non- total communication learning environment at all? She’s going to have such a more difficult time learning the same material? Fiona can’t rely on her hearing aids and FM system 100% of the time. She deserves to get the lessons as efficiently as all her class mates. The only way that deaf and hard of hearing kids get equal education is with a deaf and hard of hearing teacher. This will give them the best chance of succeeding in college and getting a good job and making it in the hearing world.
Category: thoughts on fiona’s hearing loss
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I’m look at my daughter. There are things that run through my mind; I’m so sorry you’re going through this, are you afraid your hearing is getting worse? You’re frustrated your ear is infected and it hurts to put on your hearing aide, you want to hear, you want to wear both hearing aids. I say some out loud and some thoughts I keep to myself. I realize how hearing is so important to Fiona, a part of her being, that can only be accessed through mechanical means. She is lamenting the loss of her hearing. She knows now what it’s like for it to get worse, which means she may understand a little better of what she’s missing. The loss of sound. Last night before bed she called me into her room, she was crying. “I can’t hear my voice, I want my hearing aids on”. I put her hearing aids back on. She tightens up, cocks her neck to the side and a tear comes out her eye when I put on her right hearing aid. Fiona goes through that pain, so she can hear. The wind is ripping outside. A storm is on the way. Jack and Fiona are both home sick. I’ve been caring for them since Sunday, sometimes worrying that they’ve caught that deadly flu that’s going around. What would I do? I’m also worried that I’m gonna catch it. They cough on me, wipe their snot on me, kiss me, touch my face and my mouth. I keep washing my hands and not sharing water or food with them. But I’m getting so tired from working so hard not to get sick and to take good care of them and get them healthy again and not end up in the hospital. Fiona’s ear infection should clear up without any effects once she finishes her antibiotics. But she will never hear well. I can’t do anything about it. I’m learning sign and she’s learning sign, but she doesn’t like to use it! She says, “Talk louder Mom”. Everyone complains that I talk loudly, I’m just trained to be asked to repeat and talk louder 24/7 so it’s engrained in me. It’s heart breaking to see my little girl go through these super adult, conscious, emotions of loss, missing something, acceptance, of having hearing loss, a disability. Yesterday at the park there was Fiona and her best friend who both have hearing loss, A boy with a sensory disability, he listened to music to stay calm, he walked around erratically at times, his mom followed him and took good care of him. There was a baby with downs syndrome, bopping around as fast as can be! All the kids integrated and played together. It was a beautiful but chilly day at the park. I sat in the sun even though I forgot to put on sunscreen. Children hugged each other and threw sand at each other, cried and laughed. Moms and Nannies watched the little ones, intervening when necessary. I was struck by the thought that this park life will come to an end in my life, that since I was a kid I haven’t been at parks this much, not kiddie parks with climbing structures, swings, slides, and scuffed knees. Childhood moves so fast, my childhood and theirs. What will my memories look like when I think back on this time in my life?
Dirty Laundry Blog by Jennifer Hynes 