He's slipping into silence. Test results page 8

[JennsPeeps]

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OMG this is a wonderful idea.

I hope you've found a support group (I'm positive there are tons online) for parents in situations similar to yours. You and your family may wish to start learning sign language now in order to have a leg up on it.

Many, many hugs.

 

[EweSheep]

I have been hearing impared since birth due to nerve damages in both ears and premature birth @ 6 mos and weighed 1 lb and 9? oz. It was a touch and go for my parents and they were preparing for my death because it was so rough on me. Back in the 60's prenatal care for premies were primative at best. I grew up just fine but didn't talk well. After repeated butt whips, yelling and scolding me for doing things I was NOT supposed to do, at the age of four, my Dad noticed that I was not able to respond to sounds. So they took me to U of I University and lo and behold, I was hard of hearing but not deaf enough like I am now. I can hear low pitch but not high pitch.

Childhood was very rough and cruel for me when I was growing up. Unlike today, with so many folks wearing aids, kids have it better and they dont get to be made fun of. And had speech therapy all the way up to 8th grade and I can communicate effectively but with an accent but folks didnt know I am deaf until I tell them.

The best experience for all deaf kids is to be mainstreamed so they can get the experience of the hearing world and deaf world. All deaf schools, in my opinion, is or are so limited in outside world and they dont have the real social idea of what is going on in the hearing world. There are too many "backward" ideals they got and the language they speak are NOT English and many of them write POOR English. They rather write ASL which it is abbreviated English language. Example: We would say, "We will go to the store and buy bread." ASL folks will sign and speak "We go store, buy bread." Now that is hard for me to comprend that language because everyone I was with spoke good English and therefore it was easier for me to understand English and how it would be spoken or written. Of course I do get sloppy with the language but I do try to make it clear for others to understand what I am saying. I use ESL (English sign language) with a smattering of ASL going on in there if I go with deaf folks.

I am more comfortable with hearing people than being with deaf people. In my town, there is not very many here and be able to communicate with them is like pulling teeth trying to understand their ASL language. At least we were able to get some points across.

And let kids be themselves, dont baby them and if they get picked on, understand and explain why kids do that. Make sure he takes alot of speech therapy, it does help even it was so boring for me but it was good in the long run.

I used to have body hearing aids with hideous straps. UGH! hated those things and doing cartwheels, it would fall out and I am glad today, behind the ear aids helps and easier to manage.

Technology came a long ways for the hearing impared folks. Never call a deaf person dummy or stupid, its so degrading.

So be happy with your son and with patience, determination and the good things that will happen, you and your son will benefit each other and make the mother-son bond even greater!

Good luck!

 

[EweSheep]

Quote:
OMG this is a wonderful idea.

I hope you've found a support group (I'm positive there are tons online) for parents in situations similar to yours. You and your family may wish to start learning sign language now in order to have a leg up on it.

Many, many hugs.

I love opera and if you can get in the first five rows in front of stage, the sound and vibration is so great...it was wonderful but it did give me headaches and ringing in the ears for three days LOL!

They have English subtitles above the stage for those who do not know of the language or the story contents.

 

[Wynette]

EweSheep - my gosh, I have tears in my eyes after reading your entire post. To me, you have given PRICELESS feedback to the OP, and you have allowed me to gain much more understanding of what hearing impaired folks go through. You make it seem like it was barely an obstacle for you - I don't think I would be that strong. KUDOS to you!

BEST OF LUCK Saddina with your situation; you sound intelligent and I'm sure you will make ALL the right decisions by your boy! You are in my prayers!

 

[ChooksChick]

Quote:
We have confirmed loss of hearing, and that it's progressing, but no cause yet, and without that the HMO won't approve a treatment plan.

I used to be an insurance agent- they have to allow you an appeals process, though it's not what you need right now.

Have you taken him to an ENT (otolaryngologist: ear, nose, throat doc) yet? If you need a referral to go see one, make sure you demand that of your pediatrician. You are also entitled to a second opinion, and you need to get one. This isn't a wait and see situation, as irreversible damage might occur. You need more eyes before waiting.

So- that means you can get a second opinion from either another pediatrician OR an ENT, and you can get a second opinion after that ENT, also. If the insurance balks, demand that you are entitled.

My daughter had some hearing loss at that age, and it was determined that her ginormous adenoid and short Eustachian tubes meant chronic low-grade ear infections, and the constant pressure was causing hearing loss, nearly 80% in her right ear! It was reversible, but wouldn't have been for much longer.

Be strong for your son, and I'll ray for you both!

 

[Wynette]

My step daughter just got a Cochlear Implant less than 6 months ago; she suffered a brain tumor near her ear nerves (or something like that) and ended up completely losing hearing in that ear by the time she was well enough for them to remove the tumor (oh, she has leukemia and was in the midst of chemotherapy, so was very immuno-compromised when the discovered the tumor). The implant is really helping her - she's a nurse (BSN) and works in the NICU, and has to be very alert to alarms. Now, she's able to work confidently again!

 

[EweSheep]

There was alot of barriers and obstacles in my young life. Grade school and high school was the hardest because of all the teasing and belittling, getting picked on because I was the "odd" one out made me a stronger person. My parents, they never gave up on me and to this day they were very proud of me and what I have accomplished so far in my life. I am 44 years old and looking back, I dont think I can change anything.

Even with cochlear implants, they are not fool proof and there are problems with it. I'd rather learn and cope with the losses I have and make the best of it. I have been offered cochlear implants twice in my life by various doctors and I told them no. I have adapted and adjusted and why would implants improve my life???? We have TDDs to communicate over the phone, now its computers. We have ways we can get things even I may depend on my hubby (who is NOT hearing impared but hearing selective LOL) to translate different lip readers and anything over the speakerphone or radio, etc. I can not understand words in TV without CC or understand anything on the radio or someone speaking behind a picture (like nature series) but I can HEAR it. Best example is listening to Arab speaking language on TV, you do hear it but dont understand it. I lip read alot with some of my remaning hearing I have left. It will get worse as I get older.

Having a hearing dog can benfit the kids, its a great setup for making friends!!!!

 

[Chic-n-farmer]

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Have you considered going on your own, outside the insurance?

 

[EweSheep]

My parents suggested to go to March of Dimes, they can help you with the needs you have for your son. That is what they had when they needed to get hearing tests and hearing aids for me.

If HMO dont help, try March of Dimes or some deaf assistance organizations.

 

[HobokenChickenEmergency]

My friend's son was diagnosed with autism for 2 years, because his wonderful doctor failed to notice he was almost completely deaf.

I would definitely go contact the insurance and tell them, Look. This is degenerative, and the only ENT you cover can't get him in before it gets worse.

They should be able to make an exception and send you somewhere else.