9 mo son with Bilateral Severe-Profound Hearing Loss - NEW TO GROUP

Karen - posted on 04/14/2009

Hi , Parents of deaf kids really support each other....my daugther is also profound deaf both ears, she have cochlear implant in her left ear last year. I truly understand how you feel, when i first learn about my child deafness, i was so angry, overwhelmed, frustrated and as if my world stops . I don't have anyone to talk to who understands me, but i didn't stop i went to 5 different doctors , until i realized i have to accept it, when i accepted it, my mind got clear and i started to look for solutions, at first she have a hearing aids, but it is no longer enough for her so, the audiologist told me to get a cochlear implant, it was so expensive and we don't have the means to get it, I live in Manila, Philippines, No insurance cover it,and we cannot afford it either, then i had a fund raising www.oraldeafed.org get their free materials

keep in touch

KAREN

Calley - posted on 03/03/2009

My daughter Evie was born with severe to profound bilateral hearing loss. She is 16 mos. old now. She had Congenital CMV which took her hearing and caused developmental delays. She got her hearing aids at 3 mos. and underwent the C.I. surgery at 12 mos. on her right ear. She is learning to use sign language slowly and now recognizes when I SAY "more", then she will SIGN "more" without me touching her hands to prompt it. We are very excited about this! This means she is learning to listen and associate sounds with meaning and signs! I worry that cognitively she will suffer so this is a great sign to us that she is able to learn and process info. We have many therapies and specialists for Evie, but our favorite is our teacher for the hearing impaired through the AEA Early ACCESS program.



Michelle, it sounds like you are doing exactly what you should be doing! We are definetly our children's best advocate. Keep up the good work, and if you have any questions about this whole process, please contact me.



Calley

Clarissa - posted on 03/03/2009

Well Hello! I am in EXACTLY the same situation! The only difference is that my son is 5 months old : ) He was diagnosed @ birth and has had 4 ABR's done so far. He recieved his 1st HA's @ 3months old, with no benefit so far. We  have therapy from the AEA including an audiologist, speech therapist, special ed teacher, and teacher for the deaf/HOH! They have been wonderful and he is responding very well. Neither my husband or I have any deaf members of our family and don't know what caused his hearing loss. We are going through genetic tesing to check for any recesive gene markers. We have sent our info to Iowa City where they have a wonderful cochlear implant research center! We are very hopeful that he will recieve his 1st implant early in his little life as we hope for him to be as verbal as possible as well. We are also learning signed English in the hopes of providing any way to communicate with us! We are very thankful for his health and are hopeful that implants will benefit him!  I look forward to learning more about you and your family...Good Luck and take care!!!

Clarissa - posted on 03/03/2009

Well Hello! I am in EXACTLY the same situation! The only difference is that my son is 5 months old : ) He was diagnosed @ birth and has had 4 ABR's done so far. He recieved his 1st HA's @ 3months old, with no benefit so far. We  have therapy from the AEA including an audiologist, speech therapist, special ed teacher, and teacher for the deaf/HOH! They have been wonderful and he is responding very well. Neither my husband or I have any deaf members of our family and don't know what caused his hearing loss. We are going through genetic tesing to check for any recesive gene markers. We have sent our info to Iowa City where they have a wonderful cochlear implant research center! We are very hopeful that he will recieve his 1st implant early in his little life as we hope for him to be as verbal as possible as well. We are also learning signed English in the hopes of providing any way to communicate with us! We are very thankful for his health and are hopeful that implants will benefit him!  I look forward to learning more about you and your family...Good Luck and take care!!!

Andrea - posted on 02/11/2009

Dear Michelle,



Hi! I'm new hear too and my 13 y.o. son had a severe unilateral hearing loss that has recently been diagnosed. I'm also a preschool teacher of student's with disabilities and delays. It sounds like you are doing ALL the right things to support your child and make sure all learning options are there for him. I was so glad to read that you already have him in early intervention--that makes such a difference! As a teacher I want to remind you to never hesitate to ask for more information about his services, ask for a meeting or changes when you think it is needed, and don't ever be intimidated by all of the professionals you work with. All the terminology and paperwork involved in getting services for a child can be overwhelming. Rememer that you know your child better than anyone and are his best advocate. I would recommend that family members look for classes in sign language in your area. I have found that my students learn sign language so readily and quickly that it can be a challenge to keep up with them! Their little minds work so fast! My other recommendation would be to find one member of your child's educational team that you really connect with and develop a relationship with that person. They can be an invaluable support as you navigate services for your child now and in the future.