Child with hearing loss

[maiapapaya]

We have a daughter with a moderate/severe hearing loss. She will be 5 1/2 when we travel to Disney. Normally she uses a FM system at school, on outings and occasionally at home. Has anyone every used Disney's "assistive listening" devices with a fairly young child? Is there any benefit?

 

[Talking Hands]

First does your child know sign language at all? If so some shows are interpreted. I have never used the assistive devices with a small child. All the shows and rides are very visual and actually can be enjoyed without the listening devices but you do miss out on the words and music some.
I had problems with the assistive devices so really prefer to go to interpreted shows and use the handheld captioning on rides as needed.

 

[maiapapaya]

Unfortunately our daughter doesn't sign (at this point her hearing is managed quite well with her aids/FM and she is quite verbal). We're inclined not to bother with the hearing device, but don't want her missing out either. She loves music and would probably really enjoy a lot of the shows.

 

[Val]

My DD11 has moderate hearing loss and wears bilateral aids. She also uses the FM unit in school. When she was your DDs age, it was a bit harder at Disney, as her signing in rudimentary. We did find the signed shows helpful, though, as the interpreters were very expressionate and this helped her "listen" to the verbal narration. We also tried using WDWs FM system, with hit and miss success. The biggest issue we had was that EVERYTHING on a ride was amplified- including the bangs and roars. DD11 about wet her pants on the Ellen ride when the dino's roared. We found that NOT using the FM system and even turning hearing aids OFF was better on some louder rides. We also try and sit close to the front, and use the GAC for getting a front seat in shows. (NOTE: This does NOT get you in ahead of others or reduce your time in line. As we tell our DD, hearing loss does not inhibit your ability to wait long periods of time like everyone else!).

More recently, as DD11 had become a strong reader, we have gone to using the reflective captioning. This works really well (in fact, she discovered that Donald Duck "talks"- as in says words- at Philharmagic because of reflective captioning. She never could hear Donald well enough to realize he was saying "real words"!).

We did not find the hand held captioning to be much help- it often lagged behind or ahead of the narration, and it was a pain for her to carry around. As mom, I hate being given another device to add to my pack mule backpack.

Also- and interestingly, we found that the fireworks really bothered our DD. The bangs were loud enough she really heard them, and they seemed TOO loud and out of context. We turn off hearing aids during fireworks!

When meeting the face characters, we prepared a small business card that said "DD has hearing loss; could you please look at her when you talk to her. Thank you." We found that the princess, etc., got down on her level and were really, really good about making sure she could understand them. The note was nice, because it didn't embarrass DD, but it got the point across in a quiet manner.

DD11's advice is "make sure you watch mom and dad, if you can't hear them. Stay close because it can be loud and confusing and easy to lose them. But don't worry, mom and dad keep an eye out for you. Make sure your hearing aids are on during the quieter shows, but OFF for the loud and scary ones. And have fun!"

We also found Talking Hands has excellent advice. She has helped us many, many times!!!!

Good luck, and have fun. Get lots of pictures, because soon they will be too old and too cool to get their pictures taken with the princesses!

 

[matthew&haleysmom]

DD, 8, has a bilateral moderate hearing loss. She wears hearing aides for everything except for sports. When we went to WDW, she decided not to wear her hearing aides because all of the noise bothered her. So, I can't really help you out. This year we might look into the device with reflective captioning.

One thing to keep in mind is the fireworks. They sent DD through the roof. She was literally shaking from the noise even though she had in ear plugs and her hands over her ears. You might want to think about ear plugs for the fireworks. When we go back, we are going to be staying at the Polynesian. I am thinking about letting her swim while I sneak a peek at the fireworks!

I hope your DD has lots of fun!

 

[Cinderella3]

WOW!!! My son also uses a fm system at school, but does not usually use when we are out in town or anything. He states that at Disney he doesn't need to use it since the rides and attractions are loud.
Good Luck, I hope you and your family have a wonderful time.

 

[maiapapaya]

Thanks for all of your advice Val! Our daughter gets very spooked with loud noises too. I had wondered about scenarios like you mentioned and that is why we wondered about even bothering with Disney's "assistive listening". We didn't want to make things worse by amplifying the "bad sounds". On the other hand, she has no sign at all, so I'm not sure how much the interpreters will help. We adopted our daughter internationally at age 2 1/2. She had not had any hearing aids prior and had quite a significant speech delay as a result. I think for this reason, and because they observed that she was relying heavily on visual cues, her speech therapist and teachers from our regional school for the deaf (they have a preschool outreach program in our area) decided on no signing for now, to try to encourage her listening/speech skills. I understand this reasoning, but sometimes I wonder if it would benefit her to learn ASL (there is a question as to whether her hearing is deteriorating). We do have our own FM system, so we can at least maintain good contact with her in the crowds. Nothing like having mom or dad droning in your ear all day! Will our own FM pick up the Disney signals? Is that what their equipment is (a FM)?

Great idea about the GAC. It never occured to me to get one for her. So how does it work to get seats close to the front if they don't move you up in line - not that I would ever expect to jump the line, but I'm just curious, ie. what if, by the time you enter the venue the front seats are all filled? Do they ask people to move? Are there reserved seats for visitors with GAC cards?

Unfortunately we won't be going now until the fall of 2010. Bah. It was supposed to be April 2010, so I had started researching now to work out a budget.

I'm sure I'll be seeking out more of Talking Hand's advice. I got the impression she is someone who knows what she's talking about!

 

[maiapapaya]

Guess I'm slow on the reply. Two more slipped in before I could get my post up! LOL

 

[Val]

The GAC allows you up front (or as close as they can) seats. Be sure and "check in" the the CM when you get in line for a show. We have run into a few CMs that can't seem to get their head around the difference between a wheel-chair need and a HOH need, but in general the CMs are very good about sitting you up front. They tend to have you step to the side and they then either sit you in the "special" seats or lead you in ahead of time.

We found the GAC most effective in kids shows, like Pocahontas, Lion King, Nemo, Little Mermaid, or (this dates us) Bear in the Big Blue House (I forget what it is now). Things like Honey I shrunk the audience didn't matter so much (and NO hearing aids during this one!). Things where "talking" mattered, and where it was more kid friendly was where we got up close. Also, tipping off characters helped because they made more eye contact.

DD11 gets frustrated on "narrated" rides like the train in MK where she can't hear as well. OTH, she is able to turn off her "ears" in shows she hates (but we drag her to)....like France (she naps through that one).

We always carried a zip lock bag for "wet" rides or where she might play in the water or when it rains.....no sense losing expensive hearing aids.

DD11 does really, really well. We have gotten better over the years with dealing with the hearing. She has a horrible speech issue, too. She gets 2x speech therapy at school and then we pay for audioverbal therapy through private speech/lang therapist as well- she has been seeing her speech therapist privately since she was 2! Since her hearing is progressive, and it recently dropped again, her speech is a little worse.....God knows how junior high will go next year. I have three older kids and I hated junior high with "typicals".....but I have faith in the school and the staff.

If you need more information on HOH issues, be sure and try the http://www.listen-up.org/ website and yahoo group. I find great comfort in the discussion and support from other parents. There is also likely a Hands and Voices group in your state, as well.

God Bless and good luck. Surprisingly, our kids are incredibly adaptable and compensate for whatever difficulty that is set in front of them....DD11 is a straight A student in spite of her hearing loss. She plays sports, rides horses, and has friends (or, as we call them, As the 5th grade turns cast members). She is a great kid- just a little hard of hearing (okay, REALLY hard of hearing). Oh, and we DO have to endure Hannah Montana and the Wizards of Waverly place at an ungodly decibel. I can't wait till she moves on to better TV viewing!

 

[maiapapaya]

"Oh, and we DO have to endure Hannah Montana and the Wizards of Waverly place at an ungodly decibel."

At our house it's Nihao Kai Lan and High School Musical! We are forever grateful to our audiologist for advising us to use the FM with the tv (it came with an audio cable to plug directly into the set or when our other daughter is watching too we just put the microphone in front of the speaker). Although one day I forgot to turn the FM off and I could hear HSM playing in her ears all the way out to the van!

 

[matthew&haleysmom]

DD11 is a straight A student in spite of her hearing loss. She plays sports, rides horses, and has friends (or, as we call them, As the 5th grade turns cast members). She is a great kid- just a little hard of hearing (okay, REALLY hard of hearing). Oh, and we DO have to endure Hannah Montana and the Wizards of Waverly place at an ungodly decibel. I can't wait till she moves on to better TV viewing!

This sounds just like my DD except mine is 8 and in the 3rd grade. I feel fortunate that DD's hearing loss was discovered at birth. She has worn her aides since she was 2 months old and could hold up her head. We did auditory verbal training until she was 3. Her speech is perfect. One thing that we want to do is to find family classes for ASL.

 

[Talking Hands]

One of the reasons I dislike the adaptive hearing devices is that certain noises are very painful for me. When I first got my aids I went to a Tupperware Convention and our group and several others were using the straws Tupperware makes as whistles. I felt as if someone was taking a knife and piercing my ear drums. I was in tears. Took the aids out and it still was painful. Finally the interpreter asked me what was wrong and I explained. He went to each table and asked them to stop. If they had not we were leaving as I was actually in pain. I use ear plugs for fireworks, pep rallies (work in a high school), etc. At least at the pep rallies I do have access to the interpreter as we have deaf students and teachers. I do not terp at pep rallies.
So remember if your daughter complains a sound bothers her, listen. What others think is fine can at times drive a hard of hearing person up a wall.

 

[maiapapaya]

Since we have no idea what the world sounds like to our daughter we are very careful to take her lead wrt complaints about sound. It's really amazing sometimes what bothers her. Her hearing really drops off in the high frequencies, but often it's a sound that we would have considered a "higher" frequency that is bothering her (and that we wouldn't have expected to be causing her distress). She is especially bothered by low rumbling noises though (fireworks, thunder, the snowplow ). We are also quite surprised (but pleased) that even at her age (she's not quite 4) that she will ask when she feels she needs the FM (and we haven't clued in that she might want it). She'll say "I want to hear it in my ears!"

 

[koolaidmoms]

My DD is the exact same things as your DD. We started using the system at WDW a few years ago and but as my DD did not wear hearing aids it was extremely frustrating did not always work as it was supposed to or they gave us the wrong equipment for what we needed and I ended up giving the Guest Relations people a lesson in hard of hearing children without hearing aides in many parks.

They have a new infared system that is infinitely better. My DD used it in December and it allows her to control the volume so when she feels that things are getting too loud she can turn it up or down as the show goes on. There have been a few times she was surprised as by a loud noise but she really liked the system overall.

It is a $100 deposit on your credit card now instead of $25 every day refunded to your card at the end of the day when you return the equipment.

Hope this helps some.

 

[koolaidmoms]

Okay, stupid me. I just read she DID have aids I thought it siad she did NOT have aids. Sorry.