He's slipping into silence. Test results page 8

[mom'sfolly]

Most schools for the deaf offer sign language classes and classes for parents. They have great outreach programs. If there is one in your area it could be a great resource for you. Your child will straddle both worlds if he becomes deaf. Learning ASL or signed English may be helpful. ASL is a distinct language with its own grammer, sentence structure and syntax; but signed English uses ASL signs with English grammer and word order and adds English prefixes and suffixes. Most mainstream programs use Total Communication that uses a variety of approaches.

I can't give any medical advice, but I do know there is a big difference in the treatment of nerve deafness or deafness caused by mechanical or functional issues. I hope your can get it sorted soon. Good luck with the doctors.

I would also suggest an extensive reading program before the hearing loss is extreme. Deaf children of hearing parents tend to be behind 2-4 years in reading by the time they hit high school. This has to do with language development, and deaf children (and hearing children) of Deaf parents generally don't have these issues. Your child has had nine years of language aquistion, so his situation will be different. Read, talk, add music, drama, etc while he still has functional hearing.

Deaf people lead completely normal lives, and computers and video phone technology have been a boon to those who live with deafness. With a computer and a blackberry, all the shopping, trip planning, information gathering and communication are so much easier for the deaf. Deaf people hold all kinds of jobs, in every sector of the economy.

I'm sorry you have to face this with your son. I'm sure the coming months with the doctors will be frustrating and hard. You will be in our thoughts............

 

[saddina]

The ENT and the peditrition are on board, they ordered a "comprehensive panel of tests" (from the copy I have of the request) from the university, which is the only place that had the equipment for it, I called the university directly, and they said the request isn't in thier system yet, call back on monday, but until the
HMO approves it, they can't schedule it. The price for the tests if we paid cash is just under 5K, and we just don't have that available. Our parents are equally struggling with lost jobs and reduced hours, so that's not an option.

No he's never had ear tubes, or even an ear infection, there is no visable damage to his ear, they're requesting records from when he was born and they removed the brain growth (it turned out to be a cyst, but pressure in the skull is a huge no-no).

He's been in intense reading program for the last 2 years, after he wasn't making consistent progress in phonics, I switched him to whole language and straight memorazation. He's just about caught up to his age level, but being in a gifted school, it'll be a year more to catch the kids in his class (his math scores are in the top 99.5% and that keeps his spot in the program). The only thing he's struggled with this year was spanish 1, the school requires either spanish or music classes, so I need to see what we can do there.

We've getting signed up at the community college's summer session for ASL, it starts in 3 weeks, normally they only allow kids in the one and adults in the other, but I called the languages dept. explained, and they're letting me audit the course, so we can do it together.

 

[kerr_in_ca]

I nipped over from the quail forum.

This sounds like it's a real challenge for you and your family, and you seem to be bearing up remarkably well. I hope you and your family have all the support you need. Your son is lucky that you have such a positive attitude. Even if you can't stop him from losing his hearing, I think because of your support he will be really well equipped to succeed in life as a Deaf person, which is no bad thing. I'm glad that Deaf people are posting in this thread. There's no replacing the perspective of someone who understands what it's like to be Deaf.

I don't know any ASL or SEE, but I have enjoyed watching signing videos on YouTube, especially videos where (usually hearing ASL interpreters) people sing in sign—interpret the lyrics of music in ASL and dance.

 

[saddina]

I spent today at the insurance office seeing if they could expidite the situation (no promises, but the gal I spoke to, said she could have information on Monday AM, if I could fax her a few pieces of paper. They suggested that the day I get a diagnosis, we have his doctor fill out the forms to declare him disabled. If he's qualified for SSD, then when we hit the cap for what the HMO will pay, he won't have an interruption in treatment.
Part of me says this is the sensiable thing to do, and it's how the rules say to do it.... but I hate the idea of sticking such a label to one of my kids. We see parents in the school system that get thier kids tested over and over for different things, when the kids have zero symptoms or delays. My husband had a 18yr old student who's father wouldn't let the kid have a job as it would mean the kids was able to work, dad wanted the kids to keep living at home on SSD and giving dad thier checks.

 

[Boyd]

getting ssd qualified means the HMO jumps through hoops though, no more arguments. Hang in there girly, lotsa hugs from Michigan

 

[saddina]

Quote:
Logically I know that, I just worry about the label of disabled following him thru life. He's in the tip top percent for a reason (last week he explained the multiverse theory to me like it was this week's Pokemon episode), so it's certainly not a lack of brain power. Astrocamp is just up the hill, and I'm thinking I should send him this summer, but even with him only being an hour's drive away, I'll worry like a nut.

 

[Boyd]

he'll be good

It will be something he will remember forever!!

 

[purr]

Quote:
call the HMO every day and don't stop till you get some where.And threaten to sue.

 

[saddina]

The HMO gal already knows my voice (or recognizes my number). It seems the request is in a stack somewhere waiting to be imput, but as soon as it is, they'll forward it on to the university so we can arrange scheduling. They asked I phone Monday, to give them time to imput the info. I called the University lab, and have the number and fax of the scheduling person there, so it's just the data entry time so far. The university schedule is booked, but they suggested we get on the waiting list for cancellations, as those can come up before the actual appointment we schedule.

 

[claud]

Quote:
Sounds like you may be getting somewhere. Just keep making noise so you will be heard(kindly if that's what's working and it sounds like it is).