Deaf Resources Needed

S.

Where do you live? We have Early intervention and if you are in the same area we are I can connect you to the right people.

Hi S.~

There are many ways to embrace your son's deafness and there will be many people who will tell you their opinions on what you "should" do... it will be difficult at times to hear what some will say to you.

The Deaf community might say, "don't to get one" and hearing parents of another deaf child might tell you, "it's the only way." I've been active in the American Sign Language (ASL) community for a few years now and have met many who are deaf and have a Cochlear implant (CI). I did a college research study on what the Deaf and hearing communities thought about the CI.

Some of the people involved in the research were adults that had been implanted, which was and is a difficult process for them on many levels of understanding speech, being accepted into the hearing and Deaf community.

I have met younger individuals that have had the CI implant with almost no detection of being deaf who refuse to learn ASL and when the CI batteries need to be recharged they have no ability to hear while the batteries are charging and become frustrated and angry. What tends to be the most interesting link is finding how to have communication in both the hearing and Deaf communities.

If I was your sister and you were coming to me for help, I would tell you to start learning ASL now to teach your son now as an infant. (Also know there is something called SEE which is Signed Exact English. It's not the recommenced language... stick with ASL teachings).

There are thousands of books online that come with DVD's to watch and learn, or see if your community college has a course on it, and most of all become active in your Deaf community...where you can find other support and assistance (google search the name of your town and deaf community, or deaf schools your area for this).

Another good movie to watch is called, "Sweet Nothing in My Ear" which is lightly bases upon a family seeking an implant for their deaf son. One parent is deaf and one is hearing.
Also Google "CI implants pros and cons" just to find out what other's have to say.
I know You Tube has lots of videos too.

I think any way you can start ASL communication with your son is a stepping stone.
The fact that you are now seeking the best for him, shows you are being the best mom you can be!
Get help and join support groups of CI individuals, the Deaf community, and things of this sort.
You're doing your best and I think you're headed in the right directions posting questions here.
Please contact me if you have more questions, I'd be honored to assist you!
Warmly,
M.

Hi S.,
I'm so sorry for the difficult emotional process you are going through now. And I'm very thankful that your son got better. You have a lot of great advice here. I don't think I have much to add, but just wanted to lend some support.
My step-son lost his hearing due to medical treatments required at birth. Children's hospital in Oakland has always been very good and supportive. He is 15 now and still gets much of his treatment there.
I know it is a very difficult decision to choose CI or hearing aids. So much depends on the kind and extent of hearing loss. And ultimately, you never know exactly how the surgery will turn out.
The most important advice you have received is to learn sign language now. Language development is delayed in deaf children because they are so often not exposed to language. You must learn to talk to him in sign language just like you would talk to a hearing child. Signing time is a great series - it is available on demand and at the library if you do not want to make the financial investment.
Get all the support you can. This is a difficult time filled with difficult emotions. Please take good care of yourself.
Warmly,
C.

Hi S.. My mom sent this and asked me to respond. I am a teacher of the Deaf in NY & NJ and have personal experiences with children who have Cochlear Implants.I also studied the pros and cons in my Deaf Ed Masters Program in NYC.
Let me start by telling you NO ONE can make this decision for you. I realize Dr's are telling you they can "fix" your son's hearing, but the truth is, if ANYTHING goes wrong or doesn't work, your child is still deaf. Cochlears feed the brain the information, but the children must be trained to interpret the sounds into meaning (this takes years). If you do chose to implant him, do it asap for a better chance of success. I am not for or against them. I see the pros of hearing aids & implants but I will say I have strong opinions about American Sign Language and the Deaf Community...let me explain...
Even if your child has an implant he is still deaf when it is turned off therefore because of my direct interaction with implanted deaf children & adults, I beg you to learn to sign and teach your son as well. Children benefit from becoming fluent in more than one language and ASL for deaf children IS their natural language. It is important for these children to feel comfortable in the Deaf and Hearing worlds! So use speech & sign in your home as much as possible!
Look online and email the Deaf Community to get their perspective on this...
Also, seek out programs that offer an interpreter, Deaf Ed teacher, and General Ed teacher working together so your child has every opportunity to learn and NOT slip through the system.You may also visit Fremont School for the Deaf...it is one of the best in the country!
If you have any other questions or comments please email me anytime! I would love to hear from you...You may email me directly(this is my mom's account) at: ____@____.com(that's an underscore inbetween the chychy and the 2000)
Lots of love & luck,
Chynna
P.S. My youngest sister has Downs Syndrome, so I am familiar with the grieving period families go through & in the end we are the luckiest people to have challenged individuals in our lives! :)

Well first of all, thank God, your son did not have a fatal case of meningitis. While it could have been fatal, it was not. He has lived through it. Sadly the disease itself and/or the antibiotics needed to save his life also had the unfortunate side effect that he must live with for the rest of his life. Our son also had meningitis at 14 mos and suffered hearing loss. In his case, the loss was partial and he has done very well.

I am assuming that your son was in Children's Hospital of Central California during his illness. But if he was not, that is where I would start (with the help of your pediatrician) looking for the resources you need. They have an Audiology Clinic. Your son should be thoroughly evaluated by a Pediatric Audiologist and by an Otolaryngologist or an Otologist. If there is no one in Fresno, Children's should be able to help you find a clinic at one of the other excellent children's hospitals in California, i.e. Stanford, San Diego Children's, etc.

I also would not rush into anything at this time. I don't know how long it has been since he was ill, but some antibiotic side effects may not be permanent. I don't want to give false hope, but if it has only been a short time since his illness, there may be improvement in his hearing. The staff at the Audiology Clinic will be able to review his medical record and advise you about that possibility.

All the best of luck with your little one.

B. V. (Fresno County)
Pediatric RN

If you are anywhere near Berkeley, call the Center for the Early Intervention for Deafness (CEID). They have a fabulous preschool program and work with both kids and parents to help you learn resources and how to work with schools in advocating for your child, which is your next big job. They will also have lots of information which will help you regarding implants, deaf culture, etc. Best of luck.

my son too, suffered hearing loss from meningitis... he had it at 5 weeks old... i didnt know that it could be a side effect of it. and didnt find out until he was 2!!! and now hes almost three and getting into speech therapy and hopefully a prek school for the deaf...

Hey S., I'm glad your son is okay. Being Deaf (or deaf) is hard but certainly not fatal!! (I speak from experience here.)

First of all - HURRY and learn sign language. Take some classes if at all possible. If you are going to do it yourself at home and include your little sweetheart, Signing Time makes a very good series of videos/DVD's (check them out from the library, if yours has them.) They are very good - the only person I have ever met who hasn't cared for them is my 6yo son (who is Deaf also - but that may have been because he wanted to watch OTHER movies, not that because he already knows how to sign)

It is a hard road trying to find resources and where to go and all that, especially at a time of shock and grieving. We had to go through it after we moved from CA to AZ when my son was 3. He was hearing in CA but somehow lost his hearing after moving. Both his dad and I are Deaf too, as well as members of my family so it was not foreign to us, but still a hard process because we didnt know where the resources were.
It may have been easier, or perhaps harder, for us because we knew what we wanted for him (ie, signing environment, hearing aids rather than CI's, etc).

First, start with your school district AND the school for the deaf in Fremont (it's a very good one). They can refer your child for testing. Please be wary of any doctors who automatically want to fix your son's hearing loss with Cochlear Implants (CI's) because it is not a cure, it is just something they can do. And CI's are much more invasive than hearing aids. It is cheaper to you because insurance and such will cover the costs but not hearing aids but hearing aids are sooo much cheaper. (Big peeve of mine that insurance wont cover hearing aids but will cover CI's that is much much more involved, expensive and risky than hearing aids!). Mind you, I am not against CI's per se, but the across the board implantation of children with CI's without providing the family what it needs most (communication). After researching and comparing hearing aids and CI's and learning sign language, if CI's are still the best option, then go for it. But only after having done your research on the pro's and con's and how suitable it is for YOUR son, and learning sign language.

Here in AZ, there is a organization that I finally found almost a year after finding out my son was deaf called Children's Rehabilitative Services. CRS takes care of all medical needs children with certain problems have, in my son's case, hearing aids and everything (testing, etc) is provided by them. Free. (We just buy the batteries which we get at Costco or Radio Shack).

I am not sure if CA has a place like that but I do know they have great early intervention services. They have a PIP (parent infant program) and SRP (Shared Reading Project) where they will send someone to your home to teach you how to sign and read to your son and how to deal with everyday things that you may now have to do in a different way (ie, facing him instead of talking to him from another room, how to get his attention, etc)

Please consider your hearing aid & cochlear implant options carefully. Hearing aids are far less risky and if it doesnt work, you just turn it off and take it off his ear. If a CI doesnt work, you need to do the surgery again to take it out and whatever hearing your son did have is ruined for good. I am not against it, I do have friends who chose to have the CI and they seem happy with it, but for far too many, CI's have been seen as a "fix" or "cure" to make them hearing. IT DOES NOT. It merely helps them to hear sounds (and you have to re-learn how things sound because it is not the same as what we hear normally or with hearing aids) but does not make them hearing.

Please please please do learn sign language. Communicate with your sweet little boy. As soon as you can, start today if you haven't already. Birth to 3-5 years of age is the critical language phase- they are picking up, absorbing what they hear and learning how language is formed. Deaf babies miss out on that when they cannot hear, and they NEED to SEE it. They can do anything, ANYTHING, but hear. So give him the world, visually.

My son is 6 years old and being tested later this month for the gifted talented program in the public school he is in (he has an interpreter). He is reading at the 2nd-3rd grade level. Being Deaf is NOT a handicap. The only handicap in being deaf is not having language & communication with people around you. People may interpret that to mean the deaf need to learn to speak and function in a hearing world. Well, ironically, those who are given the Deaf world & ASL first (or concurrently) then can deal with the hearing world so much easier. After all, it is easy to learn a 2nd language once you've learned a primary language. And ASL (American Sign Language) is a rich visual language. Truly is. I strongly encourage ANY & ALL moms to sign with their babies. And if you have a Deaf baby, it makes so much MORE sense to benefit your child and yourself that way!

Well, I am going on and on, and probably sound like a fanatic. Maybe I am, I believe in sign language so strongly, with being Deaf myself and having d/Deaf people in my family and having seen so many other deaf/Deaf children and adults. I KNOW what can be and what often is. and I ache for those who are not given the tools (beginning with communication at home) to succeed and reach their full potential.

Please feel free to send me a message and ask me questions about anything. Even little things are not silly. (And even if you are not S. H)

I am so sorry to hear about your son's illness. My daughter has unilateral hearing loss....one ear is perfect the other ear the nerve is dead. She contracted it because I had meningitis while 5 mos pregnant with her and I was given vyncomycin by the cdc doctor(not conclusive what caused her deafness but its not hereditary or a physical deformation).

My daughter doesn't have a cochlear implant and is doing well with her one good ear so we are not pursuing that avenue although I did alot of research at first.

I have been very happy with Children's Hospital in Oakland for most of my daughters testing....cat scans, sedated abr, audiology.

I just wanted to give you support. Make sure you get into the early intervention program with your county ASAP(we got lost in the paperwork shuffle for over 6 mos ourselves)....my daughter has been part of a 3 day a week free preschool from 1-3 yrs of age for kids with disabilities that has been wonderful. The program is a fed/state/county program for low incidence disabilities(kids without autism or downs sydrome). It has hearing specialists, speech therapist once a week, physical therapist once a week, and psychologist for the parents once a week.

Good luck with your journey and I am glad your little guy made it through his illness.

T.
(Marin County)

Go to www.warmlinefrc.org. They should be able to help you find the resources you need to help your son. They have resources for all types of special needs. You can also contact Alta California Regional Center and they can also help you get services for your child.

There are many resources out there for you to use. From what I have found, if you don't ask, they wont always tell you about every one. My daughter has spina bifida and we have found many wonderful resources and therapists to help her to become the strong little toddler she is today! First, you contact your local Warmline Recorces. They will be a great support and are willing to help you find other resources! I am not sure where you live, but you can also contact Alta Regional Center, as well as the Infant Developement Program. We use the Sacramento County Office of Education's Infant Developement program. (Yep, the school district can help now). They have teachers and therapists that will also help your son learn to communicate. They teach all children, regardless of their disabilites, how to speak with sign language, which is actually helpful for kids that just haven't started talking yet! ;o) The earlier you get started, the better for your baby! Good luck to you and your family!

____@____.com
Mary Ann L. FiedlerPresident,
SNAFU
www.valleysnafu.com

Also look in to:
www.NACD.org
www.IAHP.org
http://www.iahp.org/Brain-Injured-Children.203.0.html

Love, G.. :0)
http://stemcellforautism.blogspot.com/
"I know of nobody who is purely Autistic or purely neurotypical. Even God had some Autistic moments, which is why the planets all spin." ~ Jerry Newport

Hi,
My daughter was born deaf 15 years ago. We found out she was deaf when she was 6 mos old( they were not doing routine hearing testing on all babies at that time). We started signing to her immediately, and she was signing her first signs before one year old. She never had a language delay since we signed and communicated to her at a young age. She attends the school for the deaf in Fremont. She is very independent. She is a junior this year taking pre-calc and AP English. Things have changed a lot since she was born. There are better hearing aids and cochlear implants, but I personnally would still sign, since you do not wear hearing aids or implants 100% of the time. I am on the board of a parent group in California for parents of deaf and hard of hearing children. The group is IMPACT and our webpage is www.impactfamilies.org. We offer parent workshops at least once a year. Our group is very supportive and we have parents who use all methods of communication with their children. Good luck to you. If you have, any other questons, feel free to email.
B.
B.

I have a friend who is a teacher with a certification to teach the deaf and hard of hearing. She is employed through the county department of education. She works on site at one of the local schools. You might start with the office of ed in your county. As previously mentioned in another entry you might contact the regional center in your area. Also, the friend that I mentioned worked at a private school before working for the office of ed. It is in Sacramento and it is an oral school for the deaf. Most if not all of the children have the cochlear implants. I believe the school's name was C.H.A.A.T. (or some variation on the acronym CHAT). From my friend's point of view, the cochlear implants are controversial in the deaf community, as is this particular school. I'm not exactly sure of the reason for the controversy. I think it has to do with acceptance of the indivdual as deaf. Also, if I remember correctly the school did not endorse sign language. I would really look into this before making a decision.

Hi S.,
My daughter was born profoundly deaf. She was implanted with cochlear implants at 10 months old. She is now 3 years old and talks wonderfully. She was implanted with the Nucleus Freedom by Cochlear. Her surgeon is Dr. Joseph Roberson at the California Ear Institute in Palo Alto. She attends the Jean Weingarten Oral School for the Deaf in Redwood City. My husband & I are very fortunate and happy with our decision to have our daughter implanted with cochlear implants. Please feel free to email me(____@____.com) if you have any other questions or just need someone to chat with. It is a big decision but you will get through it. Her are some numbers and web sites for you to checkout:
California Ear Institute- ###-###-####
Jean Weingarten Oral School for the Deaf- ###-###-####, www.deafkidstalk.org
AG Bell Organization- www.agbell.org
Oral Deaf Education-877-672-5332, www.oraldeafed.org

I hope this helps. There is a lot of information out there. Please let me know if you have any more questions. Good luck to you and your family.

C.

Oh S.! My heart goes out to you and your husband! Thank the Lord that your son lived! That is so scary and heartbreaking, yet in another light, you could look at it this way. Maybe he is meant for greatness...you and your husband as well. There are many many people in this world and some of us are meant to be advocates and some of us are not. Maybe, just maybe, you and your husband are meant to be. [Advocates] My youngest son is almost 2 and he is not hearing impared, but I knew I wanted to teach him sign language as a baby. I've seen it help other mothers and I had never tried it with my other three. A good friend from my MOPS group, (Mothers Of PreSchoolers) gave me her old "Signing Time" DVDs. What a blessing that was. I started with our son when he was about 10 months old. I learned, my older children learned...even my husband learned. My daughter has now found a love for ASL...and I hope that someday she may possibly use it to help interpret for others. This program is amazing. It can be used with you and your child at the same time, but it can also be used by him alone. I used to put our baby in the crib while I showered every day and I would put in the Signing Time DVD and he would watch it intently. All of a sudden he was signing things I had no knowledge of. I had to sit down and watch it with him so that I would know what he was signing. I hope and pray that you will look into these DVDs...and that you will allow yourself to see the possitive side of this. "The Lord works in mysterious ways!" I do believe this with my whole heart! Thank the Lord that your son is alive and that there are ways to communicate with him in a loving way. Just think, he'll be talking (signing) to you...COMMUNICATING...long before other children his age! It only took our son about a month or so before he was signing at least 3-5 signs. His frist sign was "more". He wanted more to eat. I can't tell you how wonderful it was to see! I get compliments about his signing constantly. The childcare workers at church are eager to learn now too.
Many blessing to you and yours!
In his love,
M....

One of the premier centers for children who are deaf and hard of hearing is the California School for the Deaf in Fremont www.csdf.k12.ca.us/resources/babies.htm
Even though your son is far from school aged I would begin by making contact there. I'm sure there are lots of parents with helpful experiences to share.

Hi Contact your local school district as well as your doctors about resources for deaf children. They often have early intervention programs that can help and give you information. They will refer you to your regional center where your child will be evaluated and resources explained.

T.

Hi S.,

What a difficult adjustment for you and your family. Our thoughts are with you.

I have two suggestions:

1) Sign language: If you are not already using American Sign Language, teach yourself ASL. We taught our babies to sign starting at 7 months (by signing milk at every single feeding 8 times a day, for a month), and they first signed back to us at 8/9 months.

ASL is a rich language, and very intuitive because it is visual, and many of us are visual learners. [The sign "milk" looks like you are milking a cow]. Many words can be signed with a single sign, which makes it an ideal language for babies. There is a terrific sign language DVD series called Baby Signing Time by Rachel Coleman, which you may have seen on PBS. Rachel discovered her daughter Leah was deaf, when Leah was a year old. The series is designed for children of all ages including babies, and this series is far superior to any other sign language video series out there. The visuals are fun and colorful, and there is video of other babies signing, which is very powerful. You can watch and learn along with your son, and when he is a few months older, you can use signing as another way to reconnect with him. Closed captioning is available on some systems, too, which will be helpful for you. These DVDs are available at the library. Research suggests that signing expands a child's vocabulary, too, which is why it is taught in preschools and schools, to hearing and partially-hearing children.

2) "Sound and Fury" documentary: There is an enlightening documentary available on Netflix about two families, and their decisions surrounding cochlear implants. The title is "Sound and Fury", and this film received an Oscar nomination for Best Documentary Feature. You'll find more info about it, here: http://www.netflix.com/Movie/Sound_and_Fury/60003753

~ P.

Hi your question was emailed to me

My 2nd son was born profoundly deaf 10*06 and had bilateral implants at exactly age 1 by Dr Roberson at let them hear in palo alto. We have done speech therapy 3x week and is going to the auditory oral school of san Francisco. He is speaking!

We have been down the road and I am happy to chat and share and connect you with an entire community of parents with deaf kids who speak.

It may be overwhelming and accept that you will grieve! But know that it will be okay and have faith that everything will be okay!

Call or email me. I live in san Fran and just had a baby 2 months ago.

Warmest regards

M.

Hi S., that must be quite a shock for you and your husband. My husband is profoundly deaf and we used to work with deaf people and families in our past careers in many different roles. I will say we know more about cultural deafness and it's impact on socialization, education, and developing good self image and self esteem rather than the medical side of it all which is what you will only likely hear through doctors. My husband and/or I would be more than happy to talk to you about anything related to deafness and help you decide what path to take from here. Good luck. It's not the end of his world. It's the beginning of a new way is all.

Please PM me if you'd like to connect.

I am so very sorry to hear what happened to your son. You seem to have an amazing attitude...that's half the battle. I have not experienced the same thing as you have, but my son has been a patient at the California Ear Institute for ear tubes. I know they treat many different hearing issues. I don't know where you're located, but CEI is in San Ramon in the East Bay. It might be worth your while to call them and inquire and if they are not able to treat your son, perhaps they would have some information or resource for you. The doctors and staff are incredible there. I hope you are able to find him what he needs.

God Bless and I wish you much luck.

I have been an itinerant teacher for the deaf and hard of hearing, and my father and mother are in the field in varying capacities, so I would be MORE than happy to be a resource to you. Are you here in CA? I can give you the general spiel on Cochlear implants, but the very first thing that I would start doing is learning and teaching your son sign language. If you decide to persue a cochlear implant, and there are good arguments for and against, the cochlear implant programs want to see that you are working with your child on language even before the implant, so you have a better chance of being chosen if your son already signs and is developing language in that capacity. If you don't go that route it is still critical that he begin learning sign because this is the time when he is aquiring the MOST language!
I know this is a very scary time, and what a shock to have a baby born hearing then lose it and have to go through this. my email is ____@____.com I would be happy to help in any way that I can since I have some background in this. I can give you my phone number if you email me too so that you can get your questions answered in person
again happy to be a resource, good luck in your quest.

Hi S.,

I don't have any advice on cochlear implants but I was wondering how your 5 month old caught menegitis? Were the Dr's able to pinpoint it down to a source?

Hey S. it's M. Keira's sister. So NorCal center for deafness it's here in Sacramento. And for the in plants childrens hospital in Oakland. My mominlaw will puck up some info and I will get it to ya. I'll get ur address from Keira. Oh and she said CCS would cover it ifyou get qualified. If you have any other questions please email me Keira has my email address.

Hi S.,
I grew up with 3 deaf brothers (I am hearing)and my family was always very involved in the deaf community. Now after teaching my son American Sign Language, I lead a weekly playgroup for families teaching ASL to babies birth through 16 months at DayOne Center in San Francisco.
I couldn't agree more with the teacher from NY! You would best benefit your son to give him as many options as possible. By teaching your baby signs (hearing or not), it is great for their brain development and language/ reading skills throughout childhood. With a deaf child, ASL gives him the option of integrating into the deaf community as a child or adult, as well as implants will allow him to integrate into the hearing community. I would be happy to speak with you further, I know many resources in the Bay Area. You are not alone! ____@____.com

Hi S.,

How scary for you to watch your son get so sick. I'm sorry to read that he lost his hearing. I work in the school district and have seen a couple of kids with the implants. They wear a hearing aide device and most have a one-on-one aide to assist them in case they miss any information the teacher has given. You may want to check in wth your local school district and ask if you may speak to teachers and aides who work with children with implants in addition to other parents. Best wishes to you, your son, and family.

J.

Hello!
I work at the School for the Deaf in Fremont as a teacher and have been working with Deaf students for more than 10 years. I would love to chat with you about your options and my experiences with students (those who've had language at an early age and those who haven't). I've also worked with students with cochlear implants. You can email me at ____@____.com or feel free to call me at ###-###-####. A good website with resources for families with newly identified Deaf babies: http://www.csdf.k12.ca.us/outreach/resources/babies.htm

Hope to chat with you,
A.

I highly recommend the online yahoo group "listen-up." Another group that can help you is Nor-Cal. They have been an invaluable resource for our family since we discovered our son (8 years old) has a profound, bilateral high frequency sensorineural loss. You also want to get him into Early Start for early intervention. In the Sacramento area, you would contact Alta Regional Center which services children from ages 0-3.

The only advise I can really give you is to check out this website http://www.signingtime.com/ kids love their show and is a great way for children and even adults to learn sign language and I believe they also have other resources on their site. also their shows play on PBS so check your listings. Good Luck!