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

Michelle - posted on 02/10/2009 ( 6 moms have responded )

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Hello everyone. I'm actually glad i found this group. I have a 9 month old who was diagnosed @ birth. We both don't have any deaf members of our family that we know of. We did NOT waste any time in moving forward with treatment options and we received his HA at 4 months. We received school district assistance with our local school and early intervention program and started on speech therapy and sign language classes. He is a prime candidate for cochlear implants and we hope to get them for him sometime this summer. We hope to continue with sign but want him to have total communication. We are aware at the end of the day that he is DEAF and we want to give him the chance to learn all the ways he can communicate and want him to lead a normal life and treated like any other child.

I was wondering if anyone can share their experiences or if anyone is going through anything similar to this and where they are in the whole process, their feelings, advice, etc. I always love to connect with other moms, share our feelings, concerns, stresses, and what have you. There are times I feel completely alone, as many as my friends and family have children, but NONE who has a special need such as deafness. I look forward to hearing from you all and reading all the other conversations. =)

6 Comments

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Juliet Ann - posted on 12/01/2014

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I'm new to circle of moms and so far it's very comforting to read about similar situations. My son failed his hearing tests and was officially diagnosed with severe bilateral hearing loss at 1-1/2mobths. He is now 3-1/2 months and soon to be fitted with hearing aids. Yay! I'm also Looking forward to getting him CI. My husbands side has family members that are deaf but they said it was from ear infections. Whatever...Anyway we are in the process of getting genetic testing but waiting on insurance! So whilst waiting, I'm thinking about some of the viruses they say could also have caused this if it occurred during pregnancy. It made me ask, why not just get myself tested for these diseases instead of poking my little one?! So I'll contact my doc and see what happens. Anyway long story short, has anyone gone thru these tests?

Karen - posted on 04/14/2009

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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

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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

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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

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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

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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.

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