Newbie, lots of questions

[smellyshoes]

Hello everyone,

I'm completely deaf in one ear and have recently confirmed my suspicions that my 16 month old daughter, R, is hearing impaired (how profoundly we don't yet know, but she failed OAE and VROA tests--VROA at all frequencies/sounds tested and both ears). She's scheduled for an ABR in a month. She has a marvelous attitude though, just a happy giggly girl, and is picking up signs in a hurry. So, my husband (hearing) and I are in the phase now where we have a ton of questions--so I wanted to put these out there for comments!

Ok, broad/philosophical/technical questions:
(1) What should we be doing now to be as helpful as possible to R? (We have begun learning sign language, but in addition to that...)
(2) what should our daycare be doing now to be as helpful as possible to R (they're very eager to learn/help, and they do baby sign language in her classroom... we're going to offer to send one of their instructors to an ASL 101 class... what else?)?
(3) What questions should we be asking the audiologist at the ABR?
(4) R failed her newborn screen, but then passed an audiology exam at about 1 month old. Is it possible that was a 'false' pass?
(5) Is it normal for them to take a month between a failed VROA to schedule the ABR? Just seems like a lot of lost time to me, but we live near one of the best Children's Hospitals in the country and that's the soonest they could get her in...
(6) Early intervention hasn't contacted us yet after our doctor's referral nearly 3 weeks ago. I left them a voicemail this am, but they haven't called back. Is this normal? Should I be seeking private assistance, or is EI likely to come through eventually?

More fundamental questions:
(7) How do people normally refer to their kids in sign language? Finger spelling her name every time just seems silly, are 'nick names' common? Do you use a sign for something characteristic of the person?
(8) Are there books/apps/movies you really love for your kids? We're getting Signing Time and have the app Smart Hands. But I know she's not getting the full experience of being read too, and I'm trying to think of how to make that experience more effective.
(9) Are there toys particularly well suited to deaf children?

Thanks in advance for the feedback.

-smelly

 

[CSign]

Smellyshoes- interesting screen name.

I don't have time to write a thoughtful response right now, but I will say that your child is entitled to services and an appropriate education through EI. I would call them again. I'd be clear with them that your daughter needs to be in an educational environment that uses sign language consistently to communicate.

 

[Jiro]

Hello everyone,

I'm completely deaf in one ear and have recently confirmed my suspicions that my 16 month old daughter, R, is hearing impaired (how profoundly we don't yet know, but she failed OAE and VROA tests--VROA at all frequencies/sounds tested and both ears). She's scheduled for an ABR in a month. She has a marvelous attitude though, just a happy giggly girl, and is picking up signs in a hurry. So, my husband (hearing) and I are in the phase now where we have a ton of questions--so I wanted to put these out there for comments!

it might be possible that her hearing may come back at later time.

Ok, broad/philosophical/technical questions:
(1) What should we be doing now to be as helpful as possible to R? (We have begun learning sign language, but in addition to that...)
(2) what should our daycare be doing now to be as helpful as possible to R (they're very eager to learn/help, and they do baby sign language in her classroom... we're going to offer to send one of their instructors to an ASL 101 class... what else?)?
(3) What questions should we be asking the audiologist at the ABR?
(4) R failed her newborn screen, but then passed an audiology exam at about 1 month old. Is it possible that was a 'false' pass?
(5) Is it normal for them to take a month between a failed VROA to schedule the ABR? Just seems like a lot of lost time to me, but we live near one of the best Children's Hospitals in the country and that's the soonest they could get her in...
(6) Early intervention hasn't contacted us yet after our doctor's referral nearly 3 weeks ago. I left them a voicemail this am, but they haven't called back. Is this normal? Should I be seeking private assistance, or is EI likely to come through eventually?

I'm afraid I don't know answers to these questions.

More fundamental questions:
(7) How do people normally refer to their kids in sign language? Finger spelling her name every time just seems silly, are 'nick names' common? Do you use a sign for something characteristic of the person?

You can either finger-spell your kid's name if it's easy to finger-spell it or make a name-sign for them.

(8) Are there books/apps/movies you really love for your kids? We're getting Signing Time and have the app Smart Hands. But I know she's not getting the full experience of being read too, and I'm trying to think of how to make that experience more effective.
(9) Are there toys particularly well suited to deaf children?

we enjoy same things as hearing people do except if a toy is sound-based like the game begins when a toy makes a noise or something

 

[smellyshoes]

it might be possible that her hearing may come back at later time.

Really?!?

 

[Jiro]

Really?!?

well it's just a possibility but don't get your hope up. if you've already seen bunch of doctors and they all have similar conclusion, then I guess that's that.

 

[GrendelQ]

I second what Csign said. I'd bet that because you are unilaterally deaf, you probably incorporate a lot of visual input into your interactions and naturally accommodate R very well, maybe more than a typical hearing parent would naturally, so that's a big plus. And you know best what reaches your child, how to communicate with her.

Your little one is at such a critical point for acquiring language. So, my advice would be to move fast on learning ASL, your child is not an infant and is far beyond baby signs: that's like teaching a hearing child to babble at 16 months. Your child needs to be immersed in a far more sophisticated level of language right now. If you can contact the nearest school for the deaf, many have outreach programs: parent-infant programs on campus that you can enroll in with your child and be surrounded by fluent ASL-users and SLPs, as well as interacting with other parents and children learning at various levels. We have a bi-bi school within 2 hours of my home that has a wonderful program we began attending 3X a week for ~3 hours a day when my daughter was 1YO -- it made a world of difference. Through that program, we found an ASL-using day-care program and deaf babysitters! They also have a satellite program for families in Boston for those who can't do the commute out west.

If you have an interest in providing access to spoken language as well, time is equally of the essence: whether via hearing aids or CIs, months make a big difference in your child being able to acquire spoken language without unusual effort or having to work at learning to listen and make up critical lost time.

Light a fire under EI: they can be very helpful! Ask your audi to walk you through everything, find out what every test does and measures, and ask why and what, even when you think you already know the answers. I ask a million questions every time we go in for a mapping, our audi says she sometimes feels like she ought to be cramming for our visits , and we've been going there for 5 years straight, at least 4 times a year.

My only regret in all of our decision-making was that we didn't push for everything to move faster: pursue more intensive rapid language learning (both signed and spoken) and insist on faster process to get CIs earlier (we got her first CI just before she turned 2 and waited another full year to get the 2nd). We were very thoughtful throughout the process and ignored the warnings to act fast, but wish now we had moved more quickly, we lost far too much time.

We were lucky in that my daughter's hearing loss was profound, likely from birth, so there was never a real question of how much she was hearing that might be useful. But I feel like we really dodged a bullet given how close we were to missing that language development window when I encounter little ones whose parents waited until they were 3 and 4 to get CIs or to really invest in optimizing HAs: it's so glaringly obvious that they work much harder and sometimes struggle relative to those who got access to sound before they are 2YO. Same with ASL, it's so tough to see prek and K kids walking in with little to no ASL, facing a roomful of ASL-fluent kids. There's so much frustration and acting out amongst these language-deprived kids, and it seems like they just don't really catch up throughout the school year.

 

[deafdyke]

Great post Grendel. I do however think that you're missing that Li-Li had a DEEP profound loss, not nessarily one of those "now I hear you, now I don't" type of losses. It IS important to get early intervention, but on the other hand a lot of HOH kids didn't get aided or EI'd until we were toddlers back in the old days, and we developed speech and hearing skills. I think too that the emphasis on therapy,therapy ASAP really pathologizes a dhh kid's baby/toddler and even childhood. It insituties that a kid needs to be in therapy for their defiects, and can't just pick up stuff by themselves. They have to be in therapy to catch up and can't be just a kid.
Definitly contact your state's School for the Deaf. They offer AWESOME services and AWESOME early intervention.
Also contact American Society for Deaf Children - Home and Hands & Voices
Also, as a deaf kid...it's AWESOME that you're learning ASL!!! Continue with that!!!!!! That is the coolest thing EVER!

 

[Anij]

Really?!?

It depends greatly on the type and cause of the hearing loss. There have been cases where profoundly deaf infants have gone through the entire CI approval process - and then are discovered to be "naturally" only mildly Hoh, not deaf.

There are also situations where fluid in the ears, ear infections etc can cause temporary, sometimes massive drops in hearing. Once the primary cause is found and addressed, the hearing increases.

It's important to stress that these are rare events - it's not the norm and you certainly don't want to set yourself up for a situation where you're hoping R will somehow "become more hearing". That's not a healthy way to live, nor is it a productive way to make sure that R gets the services and communication that she needs. If she's one of the .01% that it happens to, then you'll be ahead in communication since she'll have a solid signed foundation.


The bottom line though is regardless if there's the teeniest chance she might regain some hearing - she needs a solid communication method in place NOW - and that means using sign language and if appropriate hearing aids. There are absolutely no disadvantages to learning and using sign language - don't let anyone tell you differently. In fact children who use sign typically have a much greater vocabulary and language comprehension than their non-signing peers.

Set a fire under EI. Contact the deaf community (or disability services) in your area and find out what mentoring programs are out there for hoh and deaf families who want to learn ASL. They will teach you how to properly read to a hoh/deaf child, how to interact with them, how to get involved with other hoh/deaf ASL families for support and play groups etc. Surrounding your child in visible language is so very important at this point. Sign everything you can, don't worry about making mistakes - just sign sign sign (and talk).

 

[smellyshoes]

Thanks for all the feedback everyone! Unfortunately, the nearest school for the deaf is 200 miles away, and doesn't appear to offer any infant/toddler-parent programs directly, they just coordinate with EI. There used to be a school for the deaf quite close by, but the state closed it a year or two ago...

But, I'm a professor, so I've been in touch with the students with disabilities office on my campus just to get some friendly feedback from them. We're all signing up for ASL classes (husband and I, and probably 1-2 folks from daycare), and are planning to start going to the weekly meetings of the local ASL club. We've been in touch with ASL instructors and are working to get dialed into the local Deaf community. I've contacted American Society for Deaf Children (thanks for that tip!), and will call EI twice a day until they start replying... I'm also leaning on the Children's Hospital to move up her ABR date.

And fear not, I have no notion that her hearing will magically return. I'd just never heard of that and was surprised. We know it wasn't fluid behind the ears or anything like that gaming the tests. And given my hearing, it really was not unexpected for her to having hearing issues at some level.

Anyhow, thanks for the support!

-smelly

 

[CSign]

Great post Grendel. I do however think that you're missing that Li-Li had a DEEP profound loss, not nessarily one of those "now I hear you, now I don't" type of losses. It IS important to get early intervention, but on the other hand a lot of HOH kids didn't get aided or EI'd until we were toddlers back in the old days, and we developed speech and hearing skills. I think too that the emphasis on therapy,therapy ASAP really pathologizes a dhh kid's baby/toddler and even childhood. It insituties that a kid needs to be in therapy for their defiects, and can't just pick up stuff by themselves. They have to be in therapy to catch up and can't be just a kid.
Definitly contact your state's School for the Deaf. They offer AWESOME services and AWESOME early intervention.
Also contact American Society for Deaf Children - Home and Hands & Voices
Also, as a deaf kid...it's AWESOME that you're learning ASL!!! Continue with that!!!!!! That is the coolest thing EVER!

What you're missing DeafDyke is that EI enables the children to be in an accessible environment so they don't have those delays. Their world in EI isn't necessarily all about therapies.

If the child is DHH and has no other things to contend with, they are likely to get some speech and language therapy, potentially a few times a week. It depends on the age of the child and their individual needs.

If the child is in an accessible environment from the start and receives speech therapy at a young age, they are in a better position than those whose parents waited until the child is older.

The whole point of EI is to address the needs of the individual child so they have the opportunity to meet age appropriate standards.

Speaking for my son, his life wasn't all about speech therapy. It was classroom time, some speech, and lots of fun.

If the child were in speech 1 hour a day, 5 days a week... That might be a bit much. Then again, depending on the age of the child and their unique circumstances it may be appropriate.

 

[Oceanbreeze]

Great post Grendel. I do however think that you're missing that Li-Li had a DEEP profound loss, not nessarily one of those "now I hear you, now I don't" type of losses. It IS important to get early intervention, but on the other hand a lot of HOH kids didn't get aided or EI'd until we were toddlers back in the old days, and we developed speech and hearing skills. I think too that the emphasis on therapy,therapy ASAP really pathologizes a dhh kid's baby/toddler and even childhood. It insituties that a kid needs to be in therapy for their defiects, and can't just pick up stuff by themselves. They have to be in therapy to catch up and can't be just a kid.
Definitly contact your state's School for the Deaf. They offer AWESOME services and AWESOME early intervention.
Also contact American Society for Deaf Children - Home and Hands & Voices
Also, as a deaf kid...it's AWESOME that you're learning ASL!!! Continue with that!!!!!! That is the coolest thing EVER!

The level of loss doesn't matter, Deafdyke. They need to get hooked into services asap so their child doesn't experience language delays. The longer you wait, the harder it will be for the child to learn a language. So, EI is crucial; unilateral loss, bilateral loss, profound loss, or, anything in between....

 

[AlleyCat]

The level of loss doesn't matter, Deafdyke. They need to get hooked into services asap so their child doesn't experience language delays. The longer you wait, the harder it will be for the child to learn a language. So, EI is crucial; unilateral loss, bilateral loss, profound loss, or, anything in between....

The level of loss DOES DOES DOES make a difference. Talk to 5 different people with different levels, you will get 5 different answers as to what gets experienced with language. Quit posting in areas you have ZERO knowledge or experience about. For once, why don't you make an attempt to fit in on other forums you actually know something about? Everybody here knows you have no hearing loss, no nothing. You're providing the OP with a disservice, as usual.

 

[GrendelQ]

The level of loss DOES DOES DOES make a difference. Talk to 5 different people with different levels, you will get 5 different answers as to what gets experienced with language. Quit posting in areas you have ZERO knowledge or experience about. For once, why don't you make an attempt to fit in on other forums you actually know something about? Everybody here knows you have no hearing loss, no nothing. You're just using your wheelchair to justify being here. You're providing the OP with a disservice, as usual.

AC, think you may have misread. Looks like Ocean was responding specifically to DD's statement that EI might be dangerous and cause lifelong damage for an HOH child vs. a deaf child. Hearing loss levels matter. But not in the context of the post she responded to: EI can be a great resource for any child with hearing loss regardless of exact level of hearing loss. EI is what provided my daughter, and us, with our first introduction to ASL as the primary component of our 3X weekly services and initiated our involvement with family sign. It didn't 'pathologize' her childhood or establish a culture of therapy to develop with the help of a professional a strong foundation of language, in our case, of ASL.

 

[AlleyCat]

AC, think you may have misread. Looks like Ocean was responding specifically to DD's statement that EI might be dangerous and cause lifelong damage for an HOH child vs. a deaf child. Hearing loss levels matter. But not in the context of the post she responded to: EI can be a great resource for any child with hearing loss regardless of exact level of hearing loss. EI is what provided my daughter, and us, with our first introduction to ASL as the primary component of our 3X weekly services and initiated our involvement with family sign. It didn't 'pathologize' her childhood or establish a culture of therapy to develop with the help of a professional a strong foundation of language, in our case, of ASL.

I didn't misread anything.

 

[Oceanbreeze]

I didn't misread anything.

Yes, actually, you did. I was stating that if one wants to prevent language delays, they should take advantage of services early; rather than later. This is a toddler and the sooner he gets services the better for him. Level of loss doesn't matter in this case.

I'm sorry if you see it differently.

 

[GrendelQ]

I didn't misread anything.

OK, you're welcome. And welcome back, AlleyCat -- I missed seeing your kind posts around here during the whole 'little piggy' exodus. Glad to see you've come all the way back home again (Wheeeeeeeeeeeeee) .

 

[CSign]

The level of loss doesn't matter, Deafdyke. They need to get hooked into services asap so their child doesn't experience language delays. The longer you wait, the harder it will be for the child to learn a language. So, EI is crucial; unilateral loss, bilateral loss, profound loss, or, anything in between....

Ocean, I completely agree with you.

The earlier children get linked up with EI, the better off they are. It doesn't make sense for a person to wait until their child has delays in kindergarten to get support. If they are in an accessible environment from the beginning (regardless of the degree of loss), and have access to services they are being set up for success.

Happy to see you around!

 

[CSign]

OK, you're welcome. And welcome back, AlleyCat -- I missed seeing your kind posts around here during the whole 'little piggy' exodus. Glad to see you've come all the way back home again (Wheeeeeeeeeeeeee) .

I needed that love that commercial, makes me laugh every time.

 

[GrendelQ]

I needed that love that commercial, makes me laugh every time.

That commercial makes us fall off our chairs each time, too -- I can't do "this little piggy" with Li-Li without us slipping into that.

I think what DD was getting at is a particular type of therapy she may have been exposed to a long time ago, long before EI was around. I just don't want to see people conflate what may be legitimate concerns with speech therapies they had as children (which DD may have) with what EI can bring to the table today.

 

[CSign]

That commercial makes us fall off our chairs each time, too -- I can't do "this little piggy" with Li-Li without us slipping into that.

I think what DD was getting at is a particular type of therapy she may have been exposed to a long time ago, long before EI was around. I just don't want to see people conflate what may be legitimate concerns with speech therapies they had as children (which DD may have) with what EI can bring to the table today.

You have good points Grendel. While some things may be the same, the overall landscape of the education and rights of DHH students is very different today than it was even 20 years ago.