Hi. I am new to this. I just had twins 8 months ago, and was devastaed to find out that one twin would need heart and esophagus surgery. Six surgeries, therapies 3 times a week, and a diagnosis of CHARGE Association later, now we are facing the possibility of her being deaf. She lived in the NICU for 6 weeks, and they said she responded to nurses. But, back then, hearing wasn't even a concern. It became a concern when she failed 2 screening tests. That's when we realized that she really wasn't responding. Every once in a while we thought she was...but it has been 8 months and nothing is consistant with her responses. She has had fluid in her ears since birth, and docs say that could contribute up to 30-40 decibles worth of hearing. But, with the way she doesn't respond they think that there is more to the picture. Long story short, she is getting tubes on July 5th, and will have the fluid removed. While sedated, she will be given an ABR to give us a clearer picture of what is happening. My questionis...Since she was about three months old, she has been making sounds and laughing. This sounds silly, but is this possible if one is deaf. I hope I don't offend anyone, I'm just a really scared mom. I just want Meggy to hear what we call her, and to hear her twin sister. My other twin is much more vocal and babbling. Meagan just girgles, and laughs. Can someone give me some info? Thanks.
is laughing a reflex?
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In my humble opinion (IMHO), babies will do any number of things automatically whether they are hearing or deaf. EX: A baby will cry when they are hungry, have dirty diaper, or want attention. It's something they pick up very quickly. I don't see where laughing is that much different.
Welcome Meggysmom to Alldeaf, and I hope that you will enjoy your stay with us. This is a very friendly forum. Congratulations on the birth of your twins. The facility you are dealing with now for Meggy's hearing tests, should be able to give you some information or put you in the direction of any organizations that have knowledge on children like Meggy.
I live in Rhode Island, we have facilities like Meeting St. Center, The Groden Center. If you have any kind of facilities like that, or even start with her Pediatrician. The doctor should have an array of information on where to go and help information for yourself to help ease your fears.
My oldest daughter used to work at Perkins School for the Blind, and she dealt with a lot of children that had CHARGE. Working with these children was so special to her, she loved them and with that decided to go back to school, nursing school so she can become a Peds nurse.
I wish you the best with your new family, I hope you will get all the information you need, and your questions answered. May God bless you all and may God ease your fears.
Look forward to your postings, and keep us informed on how Meggy is doing.
hey Meggysmom! Welcome...glad you stumbled on this site instead of another certain site which I DETEST. I don't think we have any CHARGERs posting here.
My advice....Join a CHARGE syndrome listserv, as well as join the Parent-Deafhh listserv,http://listserv.kent.edu/archives/parentdeaf-hh.html for advice and networking! Also join the American Society For Deaf Children...http://www.deafchildren.org/home/home.html....I really hope this helps...and I bet in a few years you won't even think twice about the fact that your child is dhh!!!!
Yes deaf and hoh babies babble like hearing babies.
Don't be......Being dhh isn't that bad. I know it's a shock, but along with her disabilties your daughter will be a lot like other kids. She'll just wear hearing aids/CI, and Sign and have speech therapy. Tubes may improve her abilty to hear a bit...she might be able to get better use out of hearing aids.
Now, I hear you now I don't...Virtually ALL dhh babies do that!
My advice....Join a CHARGE syndrome listserv, as well as join the Parent-Deafhh listserv,http://listserv.kent.edu/archives/parentdeaf-hh.html for advice and networking! Also join the American Society For Deaf Children...http://www.deafchildren.org/home/home.html....I really hope this helps...and I bet in a few years you won't even think twice about the fact that your child is dhh!!!!
Ehhhh.....no problem...dhh means deaf or hard of hearing. People who've been this way since childhood , generally prefer to be called deaf or hard of hearing, rather then hearing impaired.
Glad you've returned! Anyway I know it's tough to deal with the fact that your child is dhh....but you know she won't really know what's she's missing.
She does not know what it's like to hear. It's sort of like you don't know what it's like to be a man, so you don't miss it. Being dhh is not a huge tragedy. A lot of people equate disabilty with sickness, but you know...someone with a disabilty can be just as healthy as one without a disabilty! Don't mourn for a loss....your child is still going to be like anyone else except that she wears hearing aids and reads lips. and Signs....it does take a while to come to terms with such a huge difference...but you'll eventually come to terms with it.Are you interested in Sign for your daughter? My best advice coming from a kid who grew up dhh, is to give your daughter ALL the tools possible! Don't discount a methodolgy just b/c an expert claims it's not right. Give your child the gift of speech, the gift of Sign, the gift of hearing, the gift of functioning well with hearing aids/CIs and without them as well! Give your daughter ALL the methods possible!
Glad you've returned! Anyway I know it's tough to deal with the fact that your child is dhh....but you know she won't really know what's she's missing.
She does not know what it's like to hear. It's sort of like you don't know what it's like to be a man, so you don't miss it. Being dhh is not a huge tragedy. A lot of people equate disabilty with sickness, but you know...someone with a disabilty can be just as healthy as one without a disabilty! Don't mourn for a loss....your child is still going to be like anyone else except that she wears hearing aids and reads lips. and Signs....it does take a while to come to terms with such a huge difference...but you'll eventually come to terms with it.Are you interested in Sign for your daughter? My best advice coming from a kid who grew up dhh, is to give your daughter ALL the tools possible! Don't discount a methodolgy just b/c an expert claims it's not right. Give your child the gift of speech, the gift of Sign, the gift of hearing, the gift of functioning well with hearing aids/CIs and without them as well! Give your daughter ALL the methods possible!
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Here's something that hasn't been mentioned. Try to remember that ALL children have MANY things in common. They need love, respect, and communication along with basic needs. The way some communicate can be different (ASL,signs), but if it gets the job done that's what matters most. Good luck with the little ones. 
I have to say, I look forward to making my nightly visits here. You all make me feel so welcome and put ease to my aching heart. Whether Meggy's will hear or not, I am happy to have been introduced to a community that has taught me so much. I have much respect for all of you, and thank you for teaching people like me about living in a hoh or deaf world. (I'm getting the symbols down!) I don't encounter the prejudices or inconveniences some of you may encounter because I have hearing. But, I now have a higher level of awareness of those who may not hear as well, or not hear at all. I will continue to share with you Meggy's ongoing journey. Thanks for letting us into your lives. A special thanks to deafdyke and CODAchild for such warm wishes, great advice and gentle reminders.
I don't encounter the prejudices or inconveniences some of you may encounter because I have hearing. But, I now have a higher level of awareness of those who may not hear as well, or not hear at all. I will continue to share with you Meggy's ongoing journey. Thanks for letting us into your lives. A special thanks to deafdyke and CODAchild for such warm wishes, great advice and gentle reminders.You're very welcome. It is hard initally to come to terms with the fact that your child is dhh, but coming to terms with it and accepting it is one of the best things you can do! Are you a member of the American Society for Deaf Children? They are the only parental support organziation that supports ASL and speech.
What state are you in? Have you contacted your state's NAD (National Association of the Deaf) or school for the deaf? What about Early Intervention services?
What state are you in? Have you contacted your state's NAD (National Association of the Deaf) or school for the deaf? What about Early Intervention services?
bluegecko474
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Welcome to AD!! My mom had the same experience. I really bad ear infection and fluid keep leaking out of my both ear when I was 18 months old. I ended up high fever and was in coma for few days. The doctor did tubes both of my ear. Doctor told my parent there was possible for me to lose my hearing. My parent was very nervous and concerns about my future. After few weeks from discharge at the hospital, my family went to the parade. I was sleeping on the red wagon with my sister. When the firetruck siren went off, my parent realized I did not woke up and cried.
Mom told me that when I discharge the hospital and she was talking to me and smile then I smile back to her. I guess babies like to see you smile then smile back.
My parent want me to wear hearing aids and lip reading and oralism. I was in deaf school from pre school to 2nd grade. From third grade to High school, I was in public with few deaf. During that time, I do not know any sign language and closed captions on Television.
Couple month before I graduate from high school, I told my parent that I want to learn sign language and learn more about deaf culture. My parent understand. I am happy to communicate with hearing and deaf and my lifestyle.
In my opinion, you choose whatever you want to make your daughter happy and love. That is the most important thing.
Mom told me that when I discharge the hospital and she was talking to me and smile then I smile back to her. I guess babies like to see you smile then smile back.
My parent want me to wear hearing aids and lip reading and oralism. I was in deaf school from pre school to 2nd grade. From third grade to High school, I was in public with few deaf. During that time, I do not know any sign language and closed captions on Television.
Couple month before I graduate from high school, I told my parent that I want to learn sign language and learn more about deaf culture. My parent understand. I am happy to communicate with hearing and deaf and my lifestyle.
In my opinion, you choose whatever you want to make your daughter happy and love. That is the most important thing.
Well the debate really isn't over methodology now...it's more about which language should be a child's first language. I just think that there is no reason whatsoever why a dhh kid canot grow up learning and speaking both languages! Yes, I know that ASL is hard for hearing parents, but I really really think that if parents demand that their child needs to learn how to speak, they should meet the child halfway and learn Sign too! ASL is hard and frustrating....but you can say the exact same for oral-first/oral only for a dhh kid.
Thanks, this is a great statement. Something to really think about.deafdyke said:
Okay, here is another dumb question...what is ASL? I live in Arizona, and no I am not a part of the American Society for deaf children. We are currently in OT, PT, feeding therapy, and developmental therapy. I have been in contact with the Arizona School for the Deaf and Blind. Meggy also was supposed to be blind in one eye due to a coloboma, but that since has changed...she seems to see fine. She still has a weak eye muscle, so we patch for strength. The school said they would see me for patching exercises in home, but we are waiting for the results of her hearing tests to see what else they can offer us. So please pray to whoever you pray to...July 5th, the hearing test, we are hoping for hearing loss that can be corrected.
Hey Alex, how about moving this to the Parent forum? {Mod Note: Thread successfully split and moved-- }
ASL is American Sign language. That's great you're hooked up with the ASDB already! Whoohoo!!!!! That is ALSO great that she can see!!! One less thing to worry about. I've got multiple medical issues myself so have been there and done that! It's nice when you can check something off the list.....
Hopefully her loss might turn out to be more manageable with tubes...like she may be hearing at a severe level right now, but the tubes might downgrade that to a hoh level or a level that's more easily managed by hearing aids. I do know that both conductive and sensoneural losses are very common in CHARGE kids.
} ASL is American Sign language. That's great you're hooked up with the ASDB already! Whoohoo!!!!! That is ALSO great that she can see!!! One less thing to worry about. I've got multiple medical issues myself so have been there and done that! It's nice when you can check something off the list.....
Hopefully her loss might turn out to be more manageable with tubes...like she may be hearing at a severe level right now, but the tubes might downgrade that to a hoh level or a level that's more easily managed by hearing aids. I do know that both conductive and sensoneural losses are very common in CHARGE kids.
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Meggy's mom, what were the results of the screening? Also even if Meggy does turn out to have *just fluid loss*, she may still need ASL due to other issues like apraxia (which is a nereological disabilty that inhibits speech) or other associated issues.
Has your daughter had a CAT scan? She may have missing or very narrow ear canals which is causing the loss. I would assume that her outer ear is normal, but there can be "invisable" malformations of the middle ear. (absent ear canals or fused middle ear bones)
In addition, are you 100% positive she has CHARGE? Were her chromosomes tested? Where was she dx? I do know that's it's kinda easy to mistake one syndrome for another. I know of a little boy who was initally thought to have CHARGE but he has mosaic trisomy 18.
I think you should join the parentdeaf-hh listserv.(see above) Especially as I know one of the people on the list has a daughter with CHARGE and could help you.
Nearly forgot....we have a regular poster, BBNT who is the hearing father of a dhh daughter, who is from Arizona. I have not seen him around lately, but did just e-mail him to give him a heads up.
Has your daughter had a CAT scan? She may have missing or very narrow ear canals which is causing the loss. I would assume that her outer ear is normal, but there can be "invisable" malformations of the middle ear. (absent ear canals or fused middle ear bones)
In addition, are you 100% positive she has CHARGE? Were her chromosomes tested? Where was she dx? I do know that's it's kinda easy to mistake one syndrome for another. I know of a little boy who was initally thought to have CHARGE but he has mosaic trisomy 18.
I think you should join the parentdeaf-hh listserv.(see above) Especially as I know one of the people on the list has a daughter with CHARGE and could help you.
Nearly forgot....we have a regular poster, BBNT who is the hearing father of a dhh daughter, who is from Arizona. I have not seen him around lately, but did just e-mail him to give him a heads up.
The screening is on July 5th after her surgery. I think it will be more than fluid loss, cause she is not respomding to really anything. They say when the fluid is removed, we'll know at what level the real loss is. No CAT scan of the ears...yet, just the brain which showed no abnormalities. believe that once the hearing test is complete, that is one of the next things the doc wants to do. Her ears are short and lowset, and he says her ear canals are very tiny. He mentioned having a look on the inside. And, yes, she absolutely has CHARGE. They tested her chromosomes, and one came back clean, and the other test had not been performed due to the difficulty of finding someone to do it and costs. But she has C colobomas, H coarctation of the aorta (heart), A choanal atresia/stenosis, R retardationof growth, G small labis (genitalia) and E ear anomolies. She's got it all! She was tested and dx'd at Phoenix Children's Hospital.
If ear canals are tiny, would this attribute to hearing loss? It seems it would. Thanks for the info on the parentdeaf-ff listserve. I will check it out! And will also look for BBNT (name?)
If ear canals are tiny, would this attribute to hearing loss? It seems it would. Thanks for the info on the parentdeaf-ff listserve. I will check it out! And will also look for BBNT (name?)
DeafKattMom
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Yes!! Its very natural...if thinking something is funny, or feeling a tickle is possible, laughter is possible!
I thought it was very fascinating when my first son laughed for the first time... Ian laughs all the time too. They also scream all the time too...(Testing out those vocals and the "weird" feeling in thier throats.)
The whole process is incredible to me(discovering that they are deaf)... its so neat what they adapt to, enjoy and react to.
You will also notice as she gets older, she will gain an excellent periphreal vision and "respond" to you calling her name. When my son, James, was a year old(This was in 99 when diagnosing hearing loss didnt happen until 2 or plus without some initial indicators or family history), I would be almost behind him and call his name. He would turn around and look.... because he could see me from the corner of his eyes... its still incredible for me. Ian is starting to show the same exact characteristics that James did as a baby, and I find it intense and strange... we never suspected James was deaf, and to see the same behaviors in our son, Ian, who we knew was deaf since birth and diagnosed at three months through an ABR, it is just a really neat venture.
I still get "wha? and "hows?", because my older son enjoys watching cartoons, playing video games and "listening" to music" (He places his hands and face on a speaker by his bed). It is possible, anything is possible...
GL with all your endeavors.
I thought it was very fascinating when my first son laughed for the first time... Ian laughs all the time too. They also scream all the time too...(Testing out those vocals and the "weird" feeling in thier throats.)
The whole process is incredible to me(discovering that they are deaf)... its so neat what they adapt to, enjoy and react to.
You will also notice as she gets older, she will gain an excellent periphreal vision and "respond" to you calling her name. When my son, James, was a year old(This was in 99 when diagnosing hearing loss didnt happen until 2 or plus without some initial indicators or family history), I would be almost behind him and call his name. He would turn around and look.... because he could see me from the corner of his eyes... its still incredible for me. Ian is starting to show the same exact characteristics that James did as a baby, and I find it intense and strange... we never suspected James was deaf, and to see the same behaviors in our son, Ian, who we knew was deaf since birth and diagnosed at three months through an ABR, it is just a really neat venture.
I still get "wha? and "hows?", because my older son enjoys watching cartoons, playing video games and "listening" to music" (He places his hands and face on a speaker by his bed). It is possible, anything is possible...
GL with all your endeavors.
Well, it is official. We got the results of the ABR today. You have another new member to the dhh world...and I have to say, I thought it would devastate me. It didn't. So many of you gave me such great support and interesting things to think about, that I realized this is not a big deal. Her sydrome makes us work pretty hard, so learning sign seems a bit overwhelming. But, it beats the things I've had to learn how to do to date. So, I hope you continue to welcome Meggy and our family. I'm sure we'll have questions along the way! Thanks again to everyone for such kind thoughts.
DeafKattMom
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(((meggy and family))) This community is incredible once you really get into it. Your daughter will be welcome with open arms.
When I first found out about both my boys I was expecting to be very upset... but was ok with it. Actually, with Ian I cried with joy(some say odd... I guess it could be) because my boys were the same, and if they didnt have anyone else in the world to understand, they had eachother, and thats all they need.
We believe James has aspergers syndrome. He forgets signs, and often gets muddled, or cannot communicate suddenly, then snaps back to himself. We still have two years before a formal diagnosis can be made... but Im sure he does have it.
It DOES make learning a little harder, but keeping around cue cards and constant reminding does help alot. If you ever want to talk about your feelings of being a hearing parent with a deaf child in private(I know it can be overwhelming sometimes), please feel free to pm me. On fertilityfriend.com theres a small group im in with a couple other moms who have toddlers recently diagnosed as HOH. If you are interested Ill pm you a link to that buddy group.
Gentle hugs,
katt.
When I first found out about both my boys I was expecting to be very upset... but was ok with it. Actually, with Ian I cried with joy(some say odd... I guess it could be) because my boys were the same, and if they didnt have anyone else in the world to understand, they had eachother, and thats all they need.
We believe James has aspergers syndrome. He forgets signs, and often gets muddled, or cannot communicate suddenly, then snaps back to himself. We still have two years before a formal diagnosis can be made... but Im sure he does have it.
It DOES make learning a little harder, but keeping around cue cards and constant reminding does help alot. If you ever want to talk about your feelings of being a hearing parent with a deaf child in private(I know it can be overwhelming sometimes), please feel free to pm me. On fertilityfriend.com theres a small group im in with a couple other moms who have toddlers recently diagnosed as HOH. If you are interested Ill pm you a link to that buddy group.
Gentle hugs,
katt.
DeafKattMom
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http://commtechlab.msu.edu/sites/aslweb/browser.htm
Heres a great begginers site for learning signs. Its ASL and signed english.
GL!
katt.
Heres a great begginers site for learning signs. Its ASL and signed english.
GL!
katt.