I have no expereince with Ca. But I can tell you that most states, if not all have programs for deaf children. These programs can also benifit families of deaf children. It is by no means a well-fare check, there are some hurdles to go through but in the end it would be well worth it. Sounds to me that she needs to find out what is available and go from there.
She should find a college that has a deaf education program, (meaning teaching students to become teachers of the deaf) Go to the college and ask about assistance programs in her state.
I am pleased to hear that the child is finallay being exposed to deaf education, sign, & deaf culture. Shocked to hear that it took 6 years for that to occur, especially in America!
Thank you for responding. The reason it took so long for them to get her this help was because until just recently they weren't quite sure if she was able to hear or not. And if she could, how much or how little. My friend has been taking her to a specialist in SanFransisco at least once a month. They've been doing all of their little tests and stuff. For a while they were thinking that maybe she could hear something, and that it was a good possibility that it was a problem that could be repaired through surgery and what not. But at the last appointment, further and more advanced testing showed otherwise. I can't remember what the problem is called, but it's one of those that only occurs in a very few children born in the U.S.A. every year. She was lucky though. Most of the children born with this disorder have much, much worse problems. One of the other defects of this disorder is that most children are born with two different color eyes. Or worse. Her daughter was born with just the hearing loss and the two different eyes. One brown, one blue. Thank God! She is such a beautiuful little girl. It's heartbreaking to see them have to go through this. The Jr. college here only offers free courses to students who are enrolled in at least one other class. My friend like I said works very hard. She leaves for work at 5am and gets home around 4pm. She has her mother and her mother's brother living with her. Her children are 9 and 6 and a daughter who is 18 who just had a baby 6months ago. Since she had the baby she hasnt been there. She has left the baby there to be cared for by my friend and her mother. The baby thinks my friends mother is mommy.
its so sad. I hate to see her go through all of this stress every day. to top it off, she's a diabetic.
Yet she goes to work every day, and comes home and spends the rest of the day with the kids and
always has a smile on her face. so the only way she could take a class was if it was free and at night
Sounds like Waardenberg's syndrome. A blue eye and brown eye plus hearing loss is the tip off. Anyway, the child is not a candidate for cochlear implants? If she has seen the specialist and they said no, that must be the case. I feel for this mother. The child can't moderate her own voice if she can't hear it. However, there are devices that could help. There are tactile aids (sound is transmitted as vibration) and she could get sound cues from that. Also, the family is often left out in the signing as the child learns any new language much faster than adults. The mom can go online and google "learn sign language" and they have online courses, some of them free. They even have some web sites that you enter a word and a person signs it (a translator of sorts). If they want to communicate with the child, they'll have to learn sign. They should introduce their child to the Deaf community as well. It is an entire culture all to itself, seriously. They have their own language and beliefs, so be careful about how this is approached. Some of the Deaf community do not believe in cochlear implants, especially if the whole family is deaf - b/c they have their own language and why would they want their baby to learn a different language (oral) than them? Those are just some points to ponder. Check out www.asha.org and the alexander graham bell websites. There are also state programs and groups that meet for the deaf and hard of hearing. It is good that she has a friend like you looking out for her. Her child should be fine as long as the family gets educated on deafness. They can lead a full and productive life!
Sounds like the child has cochler neuropathy, and even in those cases, cochlear implants are being used. I suspect this because you stated that this type of deafness s extremely rare.
But I could be incorect.
Regardless the clock is ticking and the truth is, language exposure should have been going on a long time before all of this.
All that needed to be done is sedation, Tympanometry, OAE & an ASSR... test results after that would have been very conclusive. Not too mention the different colored eyes would have been a big affirmation of the results.
I strongly beieve mom should look into cochlear implants. they are doing it on kids with fabulous results and the kids talk cause they hear. I have one and will need another in about a year. It is so good. Years ago it was for the profound deaf, now they do it if your speech delineation is 40% or less. Great improvements, fabulous technology. I would not be able to work without the surgery. My best ear has gone down so much in 10 months. I rely on the implant. I had everything done at mass eye and ear. have her make calls. Leila
No real langauge exposure until age of 6, no auditory exposure at all.... don't expect miracles with a CI. I would expect some help, but the process will be slow.
That language acquisition didn't occur until age six... OMG. Language doesn't always occur in the form of a "spoken language". Sign Language encompasses a beautiful history and includes many notable persons. It is this child's right to be exposed to this culture and language. That she wasn't should be considered NEGLECT. I view it the same as a keeping my hearing daughter away from the rest of the hearing world until she starts school and NEVER sign around her- simulating blindness. How lost this poor little girl must have felt.
OK, I digressed a bit... Have the mother check out internet sites that provide CD-rom's that she can plug into her PC to learn a bit of the language. Or the library has a great selection of books, including children's sign books that she can learn with her child. Her child is a sponge for learning at this point and will be absorbing the language faster than anyone else in the family right now. I agree with checking out the local colleges for an interpreter or a student that is learning and wants to help.
Lastly, this is very impt and should be extremely helpful. Tell mom to get in contact with a DEAF CLUB in her area- it will prove an invaluable resource for mom and child.
PS- even if they thought there was some hearing present, this child still was considered HH (Hard of Hearing) and denying her access to basic communication is criminal (at least if the child was a "hearing child" it would have been.)
Oh I am very aware that language is not always auditory.
But in this case, the child had NO language exposure until the age of 6. Language as in sign or auditory.
Now to expose the child to langauge (any form) at 6 and expect a miracle is pretty absurd.
The child will be delayed in many aspects in life because of this.
I have to agree with you, but I did not want to be so bold, but in my view, the child has been neglected, dispite the mother haveing to work many hours. Come now, in this day and age of modern communication.... there really is no excuse for this to occur in America.
Could you imagine what Deaf advocates would do with this?!?!? BOLD? Heck, I held my tongue and didn't say nearly what I felt. I just hope I enlightened one person to the inequality of it all. I loved "the tables were turned" HA- now they have a taste of what the little girl felt for SIX YEARS. Ugh, still upset about it... I pray for that child. They spoke of tests... where was the Dr. in all this, I know if it were an audiologist they would have been informed and would have referred to appropriate agencies, right? All are accountable, this child's care was not up to only the mom if there was a Dr. involved. I would bet that the Dr. was involved in the collection of SSI for the child by the mother. I agree, no excuses, not today, not here in this country.
Cochlear implants are to deny a child a life of deaf culture and the ability to decide for themselves... It is not just a decision to get earrings... The implant procedure requires the MD/Surgeon to DRILL through the hardest bone in the human body. this is a permanent procedure, if someone is going to do something that will affect you for the rest of your life wouldn't you want to "be in" on that decision? deaf children do not need to be made to hear, they are NOT abnormal, they just can't hear.
Got to say that I am an advocate of both CI's or deaf culture... but no in between. What I mean by that is, don't torture a deaf child with speech therapy. Let him/her be what they are, and give them a sense of pride. People have no idea how high they set the bar to try to get a deaf child to produce speech. Might as well tell a kid he has to jump 80 feet or else he/she will never amount to anything or recieve love and acceptance by their family.
But if the child does have a CI, then by all means introduce the child into the verbal/auditory world, and of course allow the child to have deaf freinds, ingage in sign etc. That is, if the deaf culture will allow a child with a CI into their net work. It is a hard situation to be in. But ultimatley I believe living in the hearing world can be more full filling life.
I know this is a VERY spirited topic, so I really do not want to debate the rights of a child to deaf culture, cruelty of surgery etc.
BUT what happened to this child is a travesty. If there was not a licensed audiologist involved in this process, I would have a lawyer all over this case. The doctor should have refered out to some one with more experience. I could of handled this case with one arm, and 3 fingers coupled with sleep derprivation.
If there was an audiologist... I would sue both the ENT and the audiologist. Although ultimately, the audiologist would be excused.... that is the glory of being a subordinate to the ENT. Although the audiologist license would probably stained, but I doubt any thing further than that would happen to the audiologist. That is weird how that works, technically legal, but not?
But I also think the mother has a huge issue here too. Would you be happy with wishy washy results for 6 year?
But we do not know the details, it could be a child that has slipped through the cracks, single mother, divorced, moved several times, vertually impossible to follow up with the child etc.
All kinds of details that we do not know in this case. But what we do know is a child, at the age of 6 is finally going to be exposed to A LANGUAGE of some sort. Travesty
I could go on, but... it is probably best that I do not.
Let it be said, that in America, with todays technology, and audiology training... this should not happen.
I'm refraining heavily from how I feel about this.
At this point I don't think the hearing world is going to be more beneficial. This kid is
problably frustrated through the roof with communication issues ( not being exposed to language until the age of 6). And if your set back in the education system then kids are going to be cruel esp if your labeled "different" in any way. I do applaud the mother for finally making attempts toward sign language I was denied all my life til I went to college and learned things for myself.
I also didn't have an opportunity towards deaf culture and deaf kids because the schools and programs felt my education was too "advanced" for it. There are true dummies in this world. For the record i wasn't diagnosed as a "true" deaf person til I was about 11 when the doctors finally figured out I was deaf in one ear and hard of hearing in the other. I went completely deaf at the age 15. So speaking from experience, communication issues can be infuriating to say the least I bet this kid is pixsed off already.
Yes but your case if based on technology that is probably 20 years ago. There is some excuse for that. But not today, this child should have been discovered long ago, with immediat intervention. Six years a go, we had all the tools needed, and today, the equipment is even better, far better actually.
Cochlear implants have also improved greatly from 20 years a go.
I meant in the face of the obvious not necessarily based on technology.
I do agree that technology has improved especially the fact that very young children can be tested much easier today than 20 years ago.
I know that getting implanted during the language formative years has its benefits. However there is no guarantee this particular child would make great strides from having said technology regardless of the improvements. The mother as stated above works alot of hours, would she have the time it takes to be involved in the whole treatment process? As I understand the process would be quite intensive based on the language development delay. Embracing technology is all good and well, but its not a cure. Oftentimes that's a misunderstood assumption.
I am neither a fan or either total deaf immersion or total hearing immersion. While technology improves quality of life IT is not a complete replacement. Total deaf immersion would place constraints or limits as well. I do think bridging and bringing the two things together would be an amazing thing. Versatility is very rare in indeed.
Too often we get caught up in values, arguments and controversial ideas that we forget about whats involved : a 6 year old kid who needs to be heard.
And in my case:
I went thru tons of tests and doctors and such until I got in a room with an audiologist...who quite ironically was my greatest advocate.
who quite ironically was my greatest advocate
Nothing ironic about that, that is what they are trained to do.
I agree with Wear/a/Jimmy here. I won't advocate for either deaf culture or the CI, but in this case, the CI is probably NOT the best option. This kid has had no exposure to language for 6 years. She is now learning sign, and up to now has accommodated herself visually it is presumed. Definitely a sad, terrible situation that this is so late in diagnosis and early intervention was not available to help her and her family develop communication skills.
The CI is great for some people, not all. Its best for people with auditory memory- those who have heard before. Its not the miracle cure for a person born deaf, and won't turn them into a hearing person (I am referring to culture!) They will "hear" but not necessarily understand whatthey hear.
Hopefully the school system has something available to help the family. Perhaps a local community college or vocational school offers low cost classes. Also, contact the local vocational rehabilitation counselor for the deaf for a list of resources if there is not a separate agency for the deaf and hard of hearing.