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Special Needs
Parents of deaf children, please come in.
Apollo's failed hearing test turned out not to false; his appt. on Friday confirmed that he has profound hearing loss. I'm astounded that they can tell this at such a young age (he's only almost 3 weeks!), but obviously more heartbroken than anything. I discussed the possibility of me having CMV while pregnant and passing it on to A., which could be the cause of the hearing loss. I'm crying just thinking that this might be the case--How will I ever not feel guilty?? I still haven't processed the diagnoses fully. If you have time, could you please answer these questions (or any)?
1. I've been doing some major Googling and have discovered some parents don't believe in teaching their children sign language/the family learning it. I'm a little confused why you would not; how is your children going to communicate? Or is this argument for children who have mild hearing loss and possibly have CI? Apollo obviously will not learn it for awhile, but I would like to take classes as soon as possible with my husband. What do you think is a pro-active step?
2. In reference to the class--would it be dumb to have my 5 year old twins take a class? Or maybe I could teach them? I worry if I teach them they'll be like 'Meh. No thanks. Don't care'.
3. When did you find out if your LO was eligible for CI? Is there some cases where they will not do anything? I'm confused as to WHY he can't hear, so I hope to call the dr. tomorrow and have him explain it to me. But then again, are there just some cases where children can't hear, but no explination?
4. Did your insurance cover CI?
5. Would daycare be a bad idea for a deaf child? I was planning on going back to work when school resumes after summer, but am nervous if he'll be scared or if that will be a bad idea? My other two go there, and it's a good place, but still...
Thanks for reading my novel. Any comments are appreciated.
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Re: Parents of deaf children, please come in.
I'm sorry for you bad news, however your little guy is ADORABLE. My son is not deaf but as to your worries of CMV. Our neuro was worried about TORCH infections (C=CMV) while pregnant and they sent us to an opthalmologist. TORCH infections leave a blueprint in the back of the eye so DS had a dialated eye exam.
Maybe it's something to look into if you're so worried about it?
Just remember that there are lots of causes for deafness.
First, a huge hug to you. There is a grief that is very powerful when you find out your child is profoundly deaf. Our DD went deaf after surviving meningitis at 17 months. She got her bilateral CIs very quickly at 21 months but I would still cry over what I thought was a life that we had lost long after she was "hearing" again using her CIs. So...there are tons of ways to go about the next steps and they are very, very individual decisions. What is the best decision for your family may not be someone else's and I think this is where you see people saying "Oral and no sign is best." and someone else saying "ASL or SEE only and not oral." We become very strong advocates for our deaf children and sometimes can forget that what we want and need is not universal.
That said, here is what has worked very, very well for us. DD's cochlea were destroyed by the meningitis and treatment that saved her life, so she was a perfect CI candidate right away. Her ear anatomy is perfect...this is not always the case in congenital deafness. We also got her hearing asap after diagnosis. In the last year, getting to know others with CIs and deafness, it looks like getting CIs asap gets the best result in terms of mainstreaming and avoiding listening and speech delays. Some kiddos getting their CIs in their first year and having good speech therapy through those first few years can even avoid having a delay at all! C took about a year to get back on track, and we are just getting to the point where she falls back on a typical hearing child's speech track...she had amazing receptive speech though and had that in the first month after CI activation.
1. Signing hasn't been found to reduce the oral success of a CI kiddo. In our case, we had been using baby sign for a year with our hearing DD before she went deaf, so she already knew it as a communication method. We sign with C when her "ears" are off now, and she often uses sign to emphasize what she is saying orally, or give us help understanding oral words that are still developing...and which are hard for us to understand sometimes. ASL helps us as a family keep our already short-fused 3 year old from being terribly frustrated all the time. We do encourage oral words all the time, but haven't had trouble, as C prefers to talk and does so even without her CIs on now...say after bath and before bed, she'll be unable to hear us but still say "Night night Dad" or "books please." That kind of thing.
2. In my opinion, ASL is beneficial for all children, and if it's the right kind of class, your 5 yr olds could greatly benefit. If it is like the ASL classes we have around here though, I would probably attend myself then bring home my new signs and make it a game to use them in the home and on errands etc. It will be great to have an elementary vocabulary before you need it. May I recommend the Baby Signing Time and Signing Time dvds. We still love them here and they use songs to learn lots of useful signs.
3. We were fast tracked to CIs since menigitis deafness often leads to ossification of the cochlea (they turn to bone) so if you don't implant asap it can become impossible. C had ossification in one year after just 4 weeks of deafness! So, it depends. Our max catastrophic deductible was already met after our hospital stay, so we didn't pay for the CI surgery...At this point we are over $300,000 paid for her surgery, dr appts, hospital time and therapy. Insurance is our saving grace and we have Medicaid now that helps with the $1000 per week private speech therapy C gets now. We pay $7,000 per year out of pocket.
4. C is in daycare and was when she was deaf, too. It was a tough time, more for the adults that for C, since we had just gone through a horrible time and were all kinds of turned around. Her teachers were super loving and signed with her as they could, but weren't trained as Deaf/Hard of Hearing teachers, so it was kind of a holding pattern as we awaited surgery. Remember that your little one doesn't know there is anything missing. There's no fear there like there could be if you or I went deaf or blind. He'll need more eye contact communication...but he would be getting that as an infant anyway...teachers wouldn't be calling to him across the room like they do for toddlers, etc. This is where an honest conversation with both the daycare director and infant teachers is necessary. Only then will you know if it is a match for your son. Some centers can't manage the extra work a deaf kiddo means, while others embrace the opportunity to support the child and family.
Wow, that was alot, but it boils down to this. Your son will have a remarkable life with or without CIs. There are so many more opportunities and social acceptance now than there used to be. If he can get CIs, then there is a fantastic website and listserv called CICircle that I highly recommend...tons of knowledge and everyone is a parent to a CI kiddo there. Great place to ask questions and get honest answers.
btw, your son is a cutie!!
Thank you SO much for your detailed answers
(This is me crying tears of gratefulness...not pain/sadness!).
Knowing others experiences makes me feel better and makes me feel pro-active. My heart breaks for you. I can not imangine going through that and still being as strong as you seem. Your daughter looks so happy and cute--another thing that makes me feel much better!
Hopefully we will get some more answers as we continue down the road of more appts. I can't remember what it is called (maybe this is a good thing, so I can not google it?) but he has a test scheduled for Wednesday. I am curious to see if he has things actually structurally wrong with his ear or if something went wrong that took away his hearing, but still has a 'normal' ear, like you mentioned in your answer.
Again, thank you. So much.
Thank you for your response...that is definitely something to think about. I am definitely trying to remember there are many causes for deafness. Having no answers just makes it difficult not to focus on one culprit
((hugs)) to you. Hearing the words that your child cannot hear is tough, but once you get through the mourning of that loss I hope you will see that so much of what your child can do and experience will be limitless!!
As CMV goes, yes it is one of the main reasons an infant is born with hearing loss. Typically starts out with unilateral loss. CMV is a very, very common virus that the majority of adults carry. It would be nothing you should ever "blame" yourself for.
When we were looking into the possibility of CI that is the only time I have heard anyone talk about not learning sign. The goal of CI is that the patient will be a hearing and speaking child so they do not want them to "depend" on sign. I don't agree with that line of thinking. I think sign is a great second language for any child/person.
My 3yo is the DHH of hearing family member but my H, my 5yo and myself have enjoyed baby signing times and signing times. A DVD collection that introduces and teaches signs in a fun and organized manner. My daycare provider is watching them with the kids she cares for so they are all learning some sign.
From when we were looking into CI we were told that DD would have to be profoundly deaf in both ears and not responding to HAs to even be considered. If she qualified then there would have to be certain parts of the ear/nerve ect that would need to be "useful" for the CI. Our insurance would have covered CI.
Congratulations on your son! He's beautiful. My daughter, Amelie, was born profoundly deaf as well. We do not know what caused it, but it's most likely genetic. I felt very guilty as well. She is four months old now and we are on the road to CI. My blog might help you: www.cochlearimplantjourney.blogspot.com. The forums at hearingjourney.com are great too, as well as CICircle on Yahoo Groups.
If you want to go the CI route, I advise getting Apollo fitted for hearing aids as soon as possible. Find out when your hospital will do the surgery and if they do simultaneous bilateral. Most places will do them at one year (that's the current FDA limit, and they are supposed to wear the aids for six months before the surgery). Some research hospitals are doing them as early as six months. We are currently taking our girl to a hospital 1.5 hours away because they do them earlier and simultaneous. The hospital here wanted to wait and get her hearing aids at six months. We got them when she was two months old. It's a pita, she's on her third set of molds and she's always laying on them and getting feedback, but I think the sooner the better. You will have to decide what you want for your family.
Also, find out what kind of early intervention is offered in your area. He should qualify based on his medical diagnosis. We get free speech therapy, developmental therapy, and case management through the birth to three program. The program where I live pays for her hearing aids and all associated appointments. Insurance typically does not cover hearing aids. If there is a school for the deaf in your state, get involved with them. We have a parent adviser that comes once a week and gives us all kinds of info.
1. I've been doing some major Googling and have discovered some parents don't believe in teaching their children sign language/the family learning it. I'm a little confused why you would not; how is your children going to communicate? Or is this argument for children who have mild hearing loss and possibly have CI? Apollo obviously will not learn it for awhile, but I would like to take classes as soon as possible with my husband. What do you think is a pro-active step?
We are learning sign right now, really just in case she can't have the CI. It's very rare for people to have a damaged or missing auditory nerve that would prevent them from getting CI (less than 1% of deaf people). There are two schools of thought for speech therapy: auditory/verbal and auditory/oral. AV concentrates on just using auditory input, while AO uses some sign, lip reading, and audition. I would take the classes, as it will put you in touch with some really wonderful people.
2. In reference to the class--would it be dumb to have my 5 year old twins take a class? Or maybe I could teach them? I worry if I teach them they'll be like 'Meh. No thanks. Don't care'.
If the class is appropriate for children, I say get them involved.
3. When did you find out if your LO was eligible for CI? Is there some cases where they will not do anything? I'm confused as to WHY he can't hear, so I hope to call the dr. tomorrow and have him explain it to me. But then again, are there just some cases where children can't hear, but no explination?
We still don't know why our daughter can't hear and won't know for a few months yet. They will be doing a genetic test to see if there's a known genetic cause. They will also do an MRI and CT scan to see if she has an auditory nerve and fully formed cochlea. So hopefully she'll be eligible! Approximately 25% of people never find out what caused their hearing loss. It's most likely genetic, just not a known gene.
4. Did your insurance cover CI?
We will not know until the hospital submits for preapproval. They have told me it's not on their list of exclusions, but they can't for sure say they will approve it. I don't think any insurance company has successfully refused CI. They might deny it the first time though and make you resubmit.
5. Would daycare be a bad idea for a deaf child? I was planning on going back to work when school resumes after summer, but am nervous if he'll be scared or if that will be a bad idea? My other two go there, and it's a good place, but still...
My girl started daycare at 12 weeks. Her teachers are very good about keeping her hearing aids in. That said, I am quitting my job in May to stay home with her. The therapy required to be successful with CI is intense. We'll also be traveling quite a bit for her audiology appointments.
Your son is going to be such a joy to you. He will amaze you and you will meet so many wonderful people that you otherwise wouldn't have. Although early diagnosis is great for treatment, it's so hard to learn that your baby has special needs so early. I hadn't really bonded with Amelie when we found out. I also wish I had known that deaf babies tend to smile a little later than hearing babies. This was true in our case- she didn't really smile at me until she was three months old. And now she smiles nonstop
Good luck to you!
First of all I want to say I know what your going through, allow your self a little time to grieve but realize that this isn't the end of the world and he will be just fine. He will have a normal life, he just will communicate a little different! Don't blame yourself! You can kill yourself with the what ifs and in the end it isn't worth it, it won't change anything.
In regards to your questions.
1. I have seen some people who go the oral only route, and others go the ASL/lip reading route. You have to make a decision that works for you. My son got his cochlear later than most (he was almost 3). We are doing ASL and oral. Right now it is more focused on ASL because he for some reason isn't acknowledging sound yet, but we are working with his audiologist. He is in preschool at our local deaf school and in talking to his teacher she agrees with me that he needs to do ASL on top of oral. But some kids that get CI early and get speech therapy all the time will do just fine with oral only.
2. If you do decide to take classes I would definitely contact your local deaf school (if you have one) and ask if they have a class for parents. We have one once a week at night, they provide daycare but there is also a class for kids if they want to take it. I think if you decide to do ASL you should for sure teach your twins. Just explain to them that this is how we are going to teach your new brother how to communicate. Make it fun too!
3. Mine is a little different, DS was born with a mild/moderate hearing loss and had hearing aids. At some point between 5 months and 2 years he lost all of his hearing. We went in for sound booth hearing tests and he would pass. I think he was fooling our audiologist, he understood the 'game'
4. Yes insurance covered ours. Just a word to the wise, insurance can be very confusing (as I am sure you know) but you can't just call and ask if they cover CI. You have to word it in a specific way to know for sure. If you have a ENT I would talk to them about it and they will know how to word it. Our ENT would not do the surgery with out verification first. We even had to move the surgery because it took the insurance so long to reply.
5 Daycare. My son has never been in daycare. But I think if the daycare person is prepared for a little extra work it should be fine. Especially if it is the same person that has him, they will learn his way of communication. They can probably learn the basic signs too. But like PP said you would want to sit down and have a heart to heart with the daycare.
Sorry for the novel!
I meant to add in that I am sorry that you are going through this, I understand that this is a hard time!
Also I forgot to agree with PP that you should contact your local early intervention. They will help you make sense of all this. They are also good advocates of your children and will help you wherever they can!
If you have any questions for me I usually lurk on this board or you can PM me!
First off, Congrats on your new son and the journey you are about to take together. It may not be the journey you envisioned, but I guarantee it will be interesting and eventually you will not be able to imagine it any other way.
Nate has mild/moderate hearing loss, so he is not a candidate for CI's. His hearing loss is part of a list of other things "not typical" about him, but I think I had the strongest reaction to it for some reason. At first I was pissed. Pissed I had to learn a new language and culture I did not plan on joining. Another part of me was afraid of being a "newbie" in the deaf world. How was I to communicate? What I didn't know at the time is that over 90% of deaf children are born to hearing parents, so everyone I come in contact with in the parent group at our deaf school was in my same shoes at one time. So, know that you are not alone. Now I will try and aswer some of your questions.
1. I would learn ASL and make it a part of your routine with all of your children. You can take a class at a community college, local university, there are county programs here and our school for the deaf has free classes for parents. If you have a School for the Deaf nearby I would also see if they have a family program. Our infant class starts at 6 months old and they have 2 & 3 year old classes and preschool too. The infant classes meet twice a week for 2 hours and the parents have a parent group on Mondays and we learn sign on Fridays while the kiddos are learning in their class. It is the best program ever! I love going. There are CI parents there too. Remember that there will be time where you have to wait until you get the CI's so I would start signing simple stuff. Eat, drink, milk more. Also, sometimes the CI's are not a "fix" so it is best to be prepared for all possible outcomes.
2. Your twins are probably a bit young to attend to a class, but I would look at teaching them the easy words you are going to use with your son. I think it would be like a game for them. I took some of Nate books and learned the signs for the picture in them and I sign the books to him as well as read them. You could look into summer school classes. My 6 year old niece took sign language as a summer activity. She really liked it snd I was able to even talk to her about the animal signs she learned. Here is a good website to get you started.
https://www.babysignlanguagedictionary-mysmarthands.com/Baby_Sign_Language_Dictionary_-_My_Smart_Hands.html
3. As I said Nate is not eleigible for CI's. His hearing is brought into the "normal" range with aids. The WHY for Nate is because he has three seperate micro-deletions on his chromosome #1. From what I have found on the genome website, I believe his loss is due to his deletion at 1p35.1 . We plan to confirm this with our geneticist. You may end up having a micro-array (detailed chromosome test) of your son to see if his loss has a genetic component. If a genetic componet is found they may want to test you and your husband to see if this is something to know about for future family planning. The doctor may not know the WHY for you yet. You may find out more when they do the detailed MRI for the future CI surgery. I have not heard form any of the parents in our group as to a WHY for their kids. We don't really talk about it. It's nice information to know, but it doesn't change anything.
4. I cannot answer this one.
5. I think daycare would be fine. You may want to see if the provider is open to having a deaf child or if they have had one in the past. You would want them to reinforce what you are teaching at home and at least be able to communicate with your child essential concepts. I bet they would be open to learning a bit of Sign. I would get in touch with your EI peeps and seee if they can hook you up with an ASL trained therapist for home visits. That person could also see your son at daycare and teach the DC provider as well.
I hope some of my answers were helpful. The thing I didn't know about was having a nightlight on in your baby's room. If you think about it, there are certain sounds you hear in the night whne you wake up, such as a clock ticking or the furnace going off that are soothing to hear and are reassuring. A deaf child does not have this as a reference, so it is good to have a little night light in their room in case they wake up in the middle of the night. As a hearing person, this never occurred to me. Just thought I would pass it along.
Hi,
I am really sorry about what you are going through right now and I just wanted to let you know that I have been through what you are going through right now. My son is 8 years old and is bilaterally implanted. We found out he was deaf when he was only 9 months. You can imagine how devastating it must have been for us to find this out. However, we were told about CI by our doctor. We decided to go ahead and have him implanted on one side first. With schooling and therapy he eventually began to talk and for us that was amazing. slowly he kept getting better and better. When he called me mom for the first time just made me cry. It is a process transitioning through each step but, if you choose to you can get there. I just want to wish you good luck with whatever you decide and tell you just hold in there it may seem impossible right now but you will get through this. Just keep your chin up. If you have any other questions I would be more than happy to answer.