Advocacy Update

So, back when I blogged about being Skylar's Advocates, I mentioned we were going to get a home visit from Trish Orr, her DHH teacher. Trish is in her early 50s I would guess, a child of deaf parents and aunts and uncles, whose introduction to me went like this: "In my family, it's a disappointment if a child isn't born deaf." Whoa. Try to process that statement for a minute. It really demonstrates how deaf culture works. When everyone in the family is deaf, the hearing child is the different one. So began an intense conversation with Trish, who Skylar immediately loved; she even gave her a Skylar-special full body hug within a half hour of meeting her. Trish did a lot of listening, and a fair amount of opining, which we soaked up since hey, we are all new to this and could really use experienced people's opinions. In addition to growing up in a deaf family, Trish has worked with deaf and hard of hearing kids in Lane County since 1993.

One of her pieces of advice was to go visit the DHH preschool classroom at Bertha Holt Elementary School on the north side of town, as soon as possible. It's free, runs M-F 9-12, has an unbelievable staff to child ratio and focuses entirely on communication and language development. The teacher, Annie, is awesome, and calls parents DAILY to report on words and concepts being worked on at school so that parents can reinforce them at home. Too good to be true? Or too much separate time focusing on the hearing loss? We didn't know. So we went to check it out, thinking, okay, we could make this work, if it's what Sky needs, we can get her over to the other side of town each morning, and they can transport her (free) via bus to her community preschool each afternoon. If it's the best thing, we could make it work.

We observed the classroom for about 40 minutes. The kids (all three of them) seemed to like the teachers and were comfortable there. It's outfitted with all kinds of toys, tools, equipment, and your standard preschool paraphernalia. But the class is not right for Skylar. The three students (two are deaf, one is hard of hearing) are not talking much, if at all. One of them is signing quite proficiently for a 4 year old. Given that Skylar actually has a ton of oral language, and really likes to talk and sing, our assessment is that she would be bored there.

It was a relief to discover that the DHH classroom is not right for Sky right now, although knowing it is there is very comforting, should her situation change. I continue to be amazed by the services available for kids with hearing loss in our community.

One of the other amazing local resources is the network of parents of DHH children. We've been connected with another Annie, the mother of Boris, a 6 year old with cochlear implants and Zara, a soon-to-be 4 year old who previously went to school with P & S at Olum center on campus. We were invited for brunch with their family this past weekend, and it was really wonderful to hear their stories and advice. Annie is a strong advocate for sign language to augment oral communication, and I can see how much of an asset this would be for Sky particularly when she doesn't have her hearing aids in - in the bath tub, after she gets into bed, and swimming/boating. So we borrowed a stack of Signing Time DVD's from the family and the girls already are completely entranced with them. Should be fun and educational for all of us.

Next Tuesday we are getting the CT scan recommended by our Ear Nose and Throat doctor to get a look at the anatomy of Sky's inner ear. Wish us luck that Miss S. can hold still for the picture so we can avoid having to use anesthesia. If it doesn't work, we will do it while she's under for the fancy hearing test (sedated ABR) we have scheduled for November 19.