Mother of a deaf child.

Nicole - posted on 06/04/2009

Hi Arica!

I have not heard of that syndrome either.. My son was born with severe to profound sensory-neural hearing loss.. we didnt catch on to the problem until he was one and a half but have a couple diffent agencies helping him and he will be starting school soon.. anyways.. we still dont know exactly whats wrong . I have been told there is a genetic disorder called Connexin 26, does anyone know about this? We are still having all of his tests done..

Sharon - posted on 06/01/2009

Hiya, I have a daughter who was born profoundly deaf.... she used to wear a aid in both ears but when that wasnt helpin she ended up havin a cochlear implant....

since then she has come on leaps and bounds... she still signs if ppl struggle to understand her but in the last couple of yrs her speeche has come on loads.. she is now ten... and is almost up to a normal 10yr old ion her school give or take the odd prob....

i hope you can get things sorted and if i can help in any way feel frre to drop me a email....

take care shaz xx

Crystal - posted on 05/24/2009

My daughter is not deaf but when she turn a year old she started getting alot of ear infection. She is now 11 and has over 15 surgreies because of the ear infections. She now has to wear hearing aids.

Karin - posted on 05/15/2009

Arica, I have never heard of the syndrome as well. My first daughter was born deaf 30 years ago and signs Ausland. I have 3 other daughters who were born with hearing & and their signing is very good. As Mary describes the deaf community is very close. My eldest daughter has 4 children of her own (all hearing) and they communicate with their mum with signing as well. Deaf children often grown up quite well but their english is not very good. An example is they do not use "a, the" etc and their english is often backwards & broken "eg shop go foods" etc. Apart from that they tend to lead very productive lives, get jobs (often just labouring jobs). Employers tend to hesitate to employ them because most people don't sign & therefore cannot communicate with them. I often call it the "hidden handicap" because you cannot tell someone is deaf unless you see them sign. Have you investigated a cochlear implant for your daughter. A friend at work has a son who was born deaf (he is 2 years old now) & has had the operation for a cochlear implant & seems to be working well. Just hang in there. It is a long uphill battle bringing up any child whether they are deaf or not.

Karin

Mary - posted on 05/12/2009

Oh, Arica! Although I don't know what the syndrome is, I'm sorry she has it. As for her being deaf, all I can say from a "CODA (child of deaf adults), is she will truly be a blessing along with your other daughter to you! I grew up with deaf parents so sign is my first language. Deaf people are beautiful. And the way they gather together, like family is also amazing. It is difficult to communicate when they are children but once they have a grasp of signing (I expect is ASL) and the English language, it will become 2nd nature. I'd love to stay in touch with you and especially if you have any questions I may be able to help you with. I have grown up in the Deaf culture world all my life with my hearing brothers and sisters (one of whom is a professional deaf interpreter) and it has taught me much. Try not to get frustrated which can happen as it's happened with me but embrace and do your best. You will find a whole other world in the deaf culture and a very loving and accepting world. It's important to get your daughter with kids, even deaf kids so she is able to socialize. I have no doubt, she will make you so proud as she gets older.