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ktester

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I am sitting here trying to figure out this site, and have looked in the FAQ and all but am still lost. I try to add a photo, change my signature, or almost anything and it says I do not have permission. Do I need to post some many times or something before I become fully active? Also am trying to meet more people not just in my area but maybe someone that goes through alot of stuff like myself.

I guess to start off my daughter is 2. She has had her hearing aids for about 8 months now but only recently started wearing them ( 3 days) because of an almost year long ear infection. Kayleigh ( my daughter, I am sure you already assumed) has mild to moderate hearing lost on her left side and moderate to severe on her right. She has no speech, nor does she try to use signs with us. She was born with many congenital conditions which include Tetrology of Fellot ( heart problem) which she had repaired at 2 months as well as Cleft lip, Cleft palate, Kidney reflux, BPP ( brain condition) and a chromosome abnormality.

With being a military spouse it makes it hard to meet and keep friends on a face to face personal basis so it looks like I have made the turn to another world and joined this forum in desperate need of support, knowledge, and anything I can find.

We learn signs on a montly basis through the Early interventions but we need to broaden our time learning. We rent out baby signing time from EI to learn new signs as well.
With me being 19 and have heard all my life it's hard for me to just pick up one day using signs on a regular basis. I try the best of my ability but I am always forgetting. What help you remember? I have posted signs around my house and they work to some degree but I still feel I could sign with her more often as well as the other 3 kids who are trying to learn as well.

So I guess what I am looking for is:

A.) new people to add to my family :)

B.) Info on where I can try an learn more signs then just once a month especially since school in not an option right now.

C.) Things that may have helped you, especially if you are like me and can hear but have a deaf, hoh child, spouse, or anything to that nature.

D.) Someone that can relate to my particular situation not just on one level being hoh or deaf.

E.) Any help or suggestions you may have to help me being a better and more fluent signer.

F.) How to use this dang thing, cause like I said I am lost but would really love to learn..

THANKS IN ADVANCE- i will appericiate any help.
 
ktester said:
I am sitting here trying to figure out this site, and have looked in the FAQ and all but am still lost. I try to add a photo, change my signature, or almost anything and it says I do not have permission. Do I need to post some many times or something before I become fully active? Also am trying to meet more people not just in my area but maybe someone that goes through alot of stuff like myself.

I guess to start off my daughter is 2. She has had her hearing aids for about 8 months now but only recently started wearing them ( 3 days) because of an almost year long ear infection. Kayleigh ( my daughter, I am sure you already assumed) has mild to moderate hearing lost on her left side and moderate to severe on her right. She has no speech, nor does she try to use signs with us. She was born with many congenital conditions which include Tetrology of Fellot ( heart problem) which she had repaired at 2 months as well as Cleft lip, Cleft palate, Kidney reflux, BPP ( brain condition) and a chromosome abnormality.

With being a military spouse it makes it hard to meet and keep friends on a face to face personal basis so it looks like I have made the turn to another world and joined this forum in desperate need of support, knowledge, and anything I can find.

We learn signs on a montly basis through the Early interventions but we need to broaden our time learning. We rent out baby signing time from EI to learn new signs as well.
With me being 19 and have heard all my life it's hard for me to just pick up one day using signs on a regular basis. I try the best of my ability but I am always forgetting. What help you remember? I have posted signs around my house and they work to some degree but I still feel I could sign with her more often as well as the other 3 kids who are trying to learn as well.

So I guess what I am looking for is:

A.) new people to add to my family :)

B.) Info on where I can try an learn more signs then just once a month especially since school in not an option right now.

C.) Things that may have helped you, especially if you are like me and can hear but have a deaf, hoh child, spouse, or anything to that nature.

D.) Someone that can relate to my particular situation not just on one level being hoh or deaf.

E.) Any help or suggestions you may have to help me being a better and more fluent signer.

F.) How to use this dang thing, cause like I said I am lost but would really love to learn..

THANKS IN ADVANCE- i will appericiate any help.
Click to expand...

What Chromosome abnormality does Kaleigh have? If it's one related to the 18th chromosome, I can give you a PLETHORA of info! Even if it's not I can point you towards other organizations, like Chromosome Deletion Outreach and SOFT.
What's BPP? I have a chromosome disorder too, as well as a brain difference (white matter of a baby basicly)
 
He Kea,

As we talked about before we have some similarities. But the more I learn about your family the more I feel I can relate. As I mentioned before my second oldest has hearing loss too. And failed all of his hearing screenings at birth and had breathing issues in the beginning of life. He never really babbled etc. He was diagnosised with bilateral conductive hearing loss and had his first set of PT tubes right before his 1st birthday. When he was three the doctors discovered he had a submucas cleft palet. So he had that repaired and had extensive speech thearapy. When he was finishing up first grade they decided he would be a good canadate for hearing aides and so he has them now. He is on his 5th set of PT tubes too.

As for referalls for advice/ friends etc. Have you tried the Family Advocacy Program on base? They may be able to help. There is also a phone number you can call...I can't think of the name or number at the momnet but when I do I'll let you know. Its for military and they provide you wth resources etc for careers, medical etc.

As for this website... I am still lost as to how to upload pictures etc. So I can't help you there.

I hope I helped a little bit. Talk to you later.

CC
 
hey, I inheirted a cleft palate from my dad and also had a heart murmur before when I was little :)
 
Hey CC what's the cause of his bilateral conductive loss? Is it atresia? (no/narrow ear canals) How bad was his speech delay? You may want to see about getting him tested for genetic issues. There is a chromosome disorder that has as a feature conductive hearing loss (due to no ear canals and no eardrums) and significent spoken language delay. I know people who just have the aural atresia and they got tested, and it was found they had it. Until recently doctors thought that only kids with severe issues had chromosome disorders. But they're finding more and more mildly affected kids.....
 
I don't know anything about chromosome disorder which means there was a lack of DNA cells that was missing. :hmm: I have never thought of it to cause conductive hearing loss. Very interesting.

:welcome: to AllDeaf forum. If you are interest in our deafness and Deaf Culture plus our first primary language ASL, then this is the place where you can learn about our Deaf world.

So start learning so that you can help your daughter. Enjoy reading and posting all the threads here. See you around here. :wave:
 
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