Lmao^ My aunt, a hardcore christian, was and is still honestly convinced that if my friend (who had so severe celiac even eating off at utensil that'd touched wheat could send him to the er) could have regular communion if he 'really' believed in it.
Dr. Phil Show Features DeafBlind Triplets who Received CIs
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jillio
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deafdyke,
I agree with you 100%.
I've had people tell me how sorry they were that I was deafblind. I respond by telling them there's nothing to be sorry about -- I'm completely happy with my life. I go onto explain that my deafblindness is a normal part of who I am and doesn't make me any different, better than or less than anyone else.
I totally agree. There is nothing wrong with being deafblind. It does my head in when people go on about it. The only thing that ever stops me from doing things isn't the fact I'm deafblind but I also suffer periodically from depression. Now that really IS a problem. Deafblindness isn't though. Not once you get used to it anyway.
R2D2
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Wow. Thankfully I've never had any such comments in my life. I do have an adult deaf friend who had an offer to be healed from someone who believed they had the holy spirit. He politely declined.
How so? Cloggy, I accept disabilites as just "differences" that can be adapted to. TWO of my best friends are deaf-blind as a matter of fact.
Besides, compared to things like profound multiple handicaps (eg stereotypical deaf blind profoundly MR, with trach, g-tube and all the accessories) or something degenerative or fatal or even something like cancer, someone who's deaf blind isn't that bad.
Actually I wonder..........does anyone know what type of program they're in?
Are they in an appropreate program? A lot of times delays happen b/c the educaitonal program that the student is in, isn't intensive enough. Like maybe if they went to the Deaf Blind program at Perkins or another really good Deaf blind program, they could really really do well!
R2D2
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I would put my money on them having other issues because they are higher order multiples. Such children are notorious for having delay problems with language, gross motor development etc. It's quite common even for twins to have developmental delays e.g still being in nappies/diapers at school largely because higher order multiples are often born too early. Babies need to stay in the mother full term, otherwise there is a high chance of them suffering from life long developmental problems even if they make it through the NICU.
In IVF circles this is a hot potato because they used to transfer lots of embryos at one time to increase pregnancy rates but because of the bad results they've seen with higher order multiples, the world wide trend is now to only transfer one or two embryos at a time.
R2D2
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That's really sad and how is it they have the language skills of ten months old infants depsite CIs? It sounds like they never got the help they needed. Something stinks here.
It's more complicated than that. Do research on the health of higher order multiples and you will find that such problems are extremely common, even if they are hearing.
10 months infant speech would be equivilent to babbling and/or just a few words like "dada" "mum" etc. That's a very severe speech delay IMHO and could not just be put down to the type of support they've received.
deafmama78
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Hear Again: That makes perfect sense of why deafblind children and adults have trouble sleeping at night. I don't know why I didn't think of it before but yeah, totally make sense! Do you also experience problem sleeping? Have you taken Melation [spelling?] before? I have but 'cause I have trouble sleeping in general as I am an insomniac. :/
Canuckian_Chick
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YEah that's what I did but the group 3 doors down do this name of song too... so I just thought a different person singing a different verse for the triplets... thanks for the lyrics wink..
Glad I was of help for you finding the transcript of the show.. smile...
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I hadn't known that about higher order multiples. I'm clearly not a mom or someone who works closely with children.
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no their isnt but Dr Phil has tapped into some resources that may help the parents.
It may be one thing for me to eventually go deafblind due to Usher's but there is no way I think I could watch my child blossom and then suddenly go backwards and feel very threatened by their world because they could not see or hear. I am sure I would find ways to adapt for the situation but it would be very difficult for me to sit by and watch my child degrade in such a manner to outside circumstances that I cannot change.
It may be one thing for me to eventually go deafblind due to Usher's but there is no way I think I could watch my child blossom and then suddenly go backwards and feel very threatened by their world because they could not see or hear. I am sure I would find ways to adapt for the situation but it would be very difficult for me to sit by and watch my child degrade in such a manner to outside circumstances that I cannot change.
Hear Again
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Yes, I do -- although my difficulty sleeping has more to do with my bilateral tinnitus and inconsistent sleep patterns than it does total blindness.
I've never tried Melatonin. However, I have tried Ambien CR which worked great for me. Within 15-30 minutes of taking Ambien CR, I'm out like a light.
Having said that, I only take Ambien when my tinnitus is really bad. Knock on wood, my tinnitus has improved significantly over the past several months.
deafmama78
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Hear Again: At least you're able to get the Ambien CR. I have tried a few times when my Tinnitus were super bad and it helped. But, my Dr. doesn't believe in prescribing anything like that so that sucks ass for me. Esp the last three nights, I have not gotten much sleep. 
It is hard being an insomniac AND suffering from Tinnitus. Being "turned on" has helped sooooooo much but I still get it on some nights and when I do, they're roaring loud to the point where I just simply can't sleep hearing that. Ugh.
But, I think I am going to talk to my regular family Dr. and explain everything and see if he will help 'cause I can't continue being up nearly all night like this forever, especially in Sept when my girls are back at school, which requires getting up at like 7 am. Blah!
It is hard being an insomniac AND suffering from Tinnitus. Being "turned on" has helped sooooooo much but I still get it on some nights and when I do, they're roaring loud to the point where I just simply can't sleep hearing that. Ugh.But, I think I am going to talk to my regular family Dr. and explain everything and see if he will help 'cause I can't continue being up nearly all night like this forever, especially in Sept when my girls are back at school, which requires getting up at like 7 am. Blah!
Hear Again
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That's a good idea. It wouldn't hurt to try talking to your doctor to see what he says. Perhaps if you let him know about your tinnitus and the fact that you need to get up early in the morning (come September), he might be willing to prescribe Ambien CR or something similar.
Ambien has been a real godsend for me not only because of my tinnitus, but also because I have a long history of migraines. When I go 2 or more days without sleep (or get less than 8 hours of sleep per night), I get migraines.
Hear Again
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It is hard being an insomniac AND suffering from Tinnitus. Being "turned on" has helped sooooooo much but I still get it on some nights and when I do, they're roaring loud to the point where I just simply can't sleep hearing that.
Oh, girl...I know what you mean!
Until a few months ago my tinnitus was so loud I couldn't sleep at night. Fortunately it has improved -- although I woke up with very loud tinnitus this morning. Have you tried falling asleep to white noise, talk radio or music on the nights your tinnitus is really bad?
Ive tried melatonin. Nodda Nothing.There is sleepytime tea with valerian root.That helps my hubby who for some reason always ends up working nights and needs to sleep weird hours.Just sorta relaxes me but I have hard core insomnia.I wanted to try the 7 day challenge-I think its Ambien.Its supposed to turn your sleep pattern around.Not sure if Dr would go for it though they really dont like to give that stuff out.Hear Again I know what you mean I get migraine too.I hate them! Now that Im getting into my mid 40's getting a litttle better used to throw up get so sick.Do you take Imitrex? Its a godsend although I cant afford it so my Mom gets it for me through her insurance.as for whit e noise machines anyone have any luck> I think 1 noise is enough for me although before I was HA dependent I used to put on headphones and listen to talk radio.Put me right out,not music though too stimulating - Brains saying Party Time!
Hear Again
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I'm glad your mother's health insurance is able to cover your Imitrex -- and yes, Imitrex is quite expensive!
I take Imitrex (100 mg tablets) and have been taking it for the past several years. It works like a charm!
If I don't take Imitrex, I have the same symptoms you described -- nausea, vomiting, dizziness and sensitivity to sound. I'm also taking Depakote which happens to be a migraine preventative. Ever since I've been on the Depakote, I haven't had any migraines. Without the Depakote, I'd have 2-3 migraines per week.
Speaking of which, I have an amusing story to tell you...After my 1st CI surgery, I woke up with a migraine but didn't realize it because of how tired and groggy I felt.
After being given two doses of Tylenol by my nurse, I realized that it wasn't helping the pain. Once I was given Imitrex, all was fine.
Every time I think back to that day, I can't help but LOL at the fact that it took me almost 24 hours to realize I had a migraine.
I also can't sleep to music because like you said, it's too stumulating. I prefer listening to talk radio (or white noise) -- although if I'm listening to an interesting talk radio program, I can't sleep.
Canuckian_Chick
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Yes, I do -- although my difficulty sleeping has more to do with my bilateral tinnitus and inconsistent sleep patterns than it does total blindness.
I've never tried Melatonin. However, I have tried Ambien CR which worked great for me. Within 15-30 minutes of taking Ambien CR, I'm out like a light.
Having said that, I only take Ambien when my tinnitus is really bad. Knock on wood, my tinnitus has improved significantly over the past several months.
I have a prescription of Ambien from my dr for my insommic.... I'm too steered to take them cause I have an elderly mom who lives with me that is a Diabetic (5 insulin shots a day) and has many health problems as well bad low sugar.. so I need to be aware of my surroundings since she's deaf as well..
could you tell me more about those pills?? I was told that you would get a metal taste afterwards.... do you sleep through the night or short hours?? feel really tired in the morning?? side effects??
Canuckian_Chick
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That's a good idea. It wouldn't hurt to try talking to your doctor to see what he says. Perhaps if you let him know about your tinnitus and the fact that you need to get up early in the morning (come September), he might be willing to prescribe Ambien CR or something similar.
Ambien has been a real godsend for me not only because of my tinnitus, but also because I have a long history of migraines. When I go 2 or more days without sleep (or get less than 8 hours of sleep per night), I get migraines.
Ack migraines, I have chronic migraines since I was a teenager so I guess that's the point not having much sleep .. making sense but it's hard!!! the dr even told me to take more vitamin B2 (ribolavin - sp) and drink more water cause your body needs water ....I sometime will sleep for two or three days straight... hang in there!!!