DD is possibly deaf

[anonnyme]

Hi, My 18mo dd has just been referred for hearing tests. I feel quite shocked as I hadn't really noticed that there might be a problem.
A HV who hadn't seen dd before queried if there might be a problem, so we arranged for another HV to do a check & she also feels there may be an issue so she referred her.
Basically is there anybody who has deaf dc, who could tell me what to expect with testing & perhaps give me some tips on things I can do to help dd. Not really sure whats going to happen next so any info would be great

I'm not a parent of a deaf child so don't have personal experience of what to expect re testing etc.
Some people I work with are deaf.

Have you tried baby signing? It might be good to give your DD the opportunity to communicate and understand you that way.

DS1 isn't deaf either and also has ASD. However, at very much the same age as your DD he was referred for hearing tests and it turned out he had glue ear. In his case it affected his hearing quite badly for a while (and we didn't realise either) but it did clear up before he was 2.

The hearing test consisted of him sitting on my lap opposite a play therapist who was really there to distract him. The audiologist then played sounds at different frequencies and levels which came out of speakers on his left and right side. When he responded to the sound (by turning his head in the direction of the sound) the audiologist activated a mechanical puppet within the speaker as a visual cue to keep him interested and co-operating. By doing this, they could tell what he could hear with each ear.

When he was a bit older, they used another test which put a headphone on the bone behind his ear which conducts the sound waves. Then they played the sounds through the headphone (I couldn't hear them) and watched his reaction. This was to see if the ear was conducting sound properly (it bypasses the ear drum). There are other tests but I think at that age they will have to be done under sedation.

The National Deaf Children's Society (NDCS) is a very good place to start for information - even if your DD turns out not to be deaf, they can provide advice on the types of hearing tests and what they will show (much better than I have done). Their website is here

Paisley is right about signing - I was already doing sing and sign classes with DS so we had a head start on that front. He took ages to use any signs but that was because he has a communication disorder. He understood them though. The chances are that your DD will pick up signing very quickly. There are resources available online and something special is a good programme if you want to learn some signs. I would start with the very basics though, more, milk, drink, eat, all gone and maybe some animals as they are generally the most useful and are easy to pick up.

Hopefully someone who has more experience with hearing loss will come along soon and post some advice.

As far as tests go, she'll probably do the distraction test which means someone will sit in front of her and have a small toy to get her attention, a noise will be made to the side and she will be expected to turn to the side to look for a noise, most departments have been updated now so she'd be looking to face a tv screen that would show a cartoon or film clip as a reward for turning. Sounds like it'll never work in a million years but it does, unless your child has other needs as Leonie said

It doesn't necessarily mean she has a permanent hearing loss, it could be something correctable like glue ear which they will also test for, it involves a small probe that sits just in the ear canal, doesn't hurt and only takes a few seconds to do that will tell if the ear drum is moving as it should.

tips for communication would be to make sure you are facing each other at a reasonably close distance and to reduce any background noise when you are trying to talk to her.

I would also strongly recommend you look at the ndcs site, loads of parent friendly info over there

x posts dcs decided to have a disagreement in the middle!

Thanks a lot for the advice & the links, will look more closely into them later on

Apparently the HV has referred her for hearing tests, developmental check & a speech workshop thing which isn't speech therapy but a sort of precursor to it.

Have to get off now to sort out dinner, will be bk later on though.

If your dd does turn out to be deaf NDCS is a really good resource, also worth asking social services if they have a sensory impairment team, who may be able to offer support, loans of books/ equipment.

Forest bookshop, also amazing for books, DVDs CD ROMS, around hearing impairment..

My ds is deaf. He was diagnosed at birth. At around 18months I would expect a glorified distraction test. They will test for whether its a permanent loss or a temporary type loss.

As others have said NDCS is amazing. We wouldn't be anywhere near where we are today without them and their support and knowledge.

All the deaf children I know were diagnosed at birth - so I think it's likely your child has either no hearing problems, or temporary problems, or partial hearing, rather than full hearing loss....

Hi, thanks for all the responses.

DD passed the newborn hearing test that they did in the hospital & nothing was picked up at any health checks. She's had a couple of ear infections, so perhaps they have caused a problem. I just don't know

I still feel quite shocked at the fact that there is a problem but figure the more informed I am on it the better

My dd is hearing impaired. Diagnosed at age 3.

She passed every distraction test from birth - so these aren't fool proof.

It's very likely your baby has glue ear seeing as she has had ear infections. This is not the end of the world - its ever so common. Very occasionally an ear infection can cause permanant damage to the chochlea, but the most likely scenario is that children grow out of being prone to glue ear.

At age 3 my child was given a proper hearing test (headphones on and dropping blocks into a bucket when she heard a beep). A true test of a very young child's hearing is difficult because you're never sure of how much they understand or co-operate. It's a case of trial and error. Newborn screening works well on newborns because the test requires baby to not move - older babies tend to be more awake and fidgety.

My dd has permanant moderate hearing loss. She has excellent clear speech and even without her hearing aids you would not know she was deaf. It's not all gloom and doom!

How old is your dd kissingfrogs? it's great to hear that she is doing well

One of the things that has been noticed with dd is that she doesn't really babble - it's all aaaaaaaaaaaaaaaa rather than dada baba etc. I've been worrying about how her speech is going to be.

The thing I'm finding hardest about this is the uncertainty . I'm finding it quite hard because I've not had any personal experience with deaf people, I don't really know very much on the subject. The links that have been posted for the NDCS have been great - very informative. At least I'll have a good idea of what questions to ask at the appointment. It will probably be easier to deal with when we know exactly what is the problem & to what extent, or is that just wishful thinking?

I just want to make sure that I'm doing everything that I can to help dd.

My Dd was diagnosed at 18mths as well, she has auditory dyssynchrony which meant she passed all tests at birth but has essentially a dodgy connection closer to her auditory nerves, so in answer to early post yes it does happen either due to the above(10%) or progressive loss, or ear infections. Don't worry about missing it. Get the tests done and then you will know what if anything you are dealing with. My Dd is now doing very well as she had a cochlear implant when she was 2. If you do have a hearing loss diagnosed you'll get a teacher of the deaf to talk you through everything. Keep on the case and fingers crossed it turns out well. Ndcs also has a chat room which is fairly active.

anonnyme Not knowing is awful. I think the best thing you can do at the moment is chase the appointment. There can be quite long waits in some places but if you know the referral has gone through, phone up the audiology department as they can give you an indication of when your DD is likely to be seen. Also, you can ask to be put on the cancellation list so that if someone cancels you can be seen sooner. Your HV will be able to tell you where she has been referred and the phone number should be available online once you know which hospital to contact.

OP My dd is now 5.5.
I can relate to how you're feeling - the uncertainty, the lack of knowledge and experience of hearing loss/deafness.
After the initial shock it gets easier, a lot easier. There is a lot of help out there for HI (hearing impaired) children - thanks to campaigns from the NDCS.

My dd is in mainstream. She has had a TOD (teacher of the deaf) since diagnosis who comes into school to check progress and aids. She has had speech & language therapy but its always been a case of working with her language not her speech. Dds case is somewhat complicated as she is an anomoly as she may have an additional language disorder. Despite this, dd is doing very well at school, is an avid reader, a real socialite, and is full of confidence.

Try not to worry, My DD has a moderate to severe hearing loss (80%) she failed all distraction tests as a baby & toddler but the HV didn't seem to see it as a problem. To be fair, you wouldn't know she had a hearing impairment talking to her.

It sounds more likely you dc has glue ear, which they can test for aside from any other neurosensory hearing loss, it's easily treated with an operation and often there is no long term damage.

kissingfrogs My DD is very similar although it wasn't picked up until she was 4. She is in main stream school but so far we're finding it very difficult to come across extra help, ie a TOD and the teachers are struggling to get any progression at all with her, as am i (about to create a post asking for advise on this seperatly when i came across this first)Does your dc have a statement of SN?
We also believe she may have an additional disorder processing language as well as LQT, her speech is good but her sentences tend to be jumbled. She also has hearing aids, and can lip read well. Everything is just moving so slowly at the moment?!?! I think it must be the area i live in but there is a total lack of support seeming for a child her age who's still undergoing diagnosis?!?

my DD is nearly 7 now forgot to mention, she's had the aid for 6 months

Hi Just came to add that my DS (9) is also deaf and was diagnosed at 3 so it is not that unusual for it to be missed at birth. He is severe / profound wears 2 hearing aids and has a radio aid in school. He has glue ear and senseral neural loss, he has had 3 sets of grommets and has regular micro suction to keep his ears clear of wax. He is about to have a coclear implant assessment.
That all sounds pretty negative but he has normal speech (could talk when diagnosed), refuses to learn sign as he doesn't think it is relevent to him, is in mainstream with no statement and performing at or above normal levels. As far as he is concerned he is a normal 9 year old, he loves sport, and through the NDCS has had some opportunities to play deaf tennis and football. This does get him to meet other deaf kids which i think is important for his self esteem.
The testing period is stressful but others have said there is siome great support from the NDCS, it is worth contacting your local group so you can meet others going through the same thing.
Hope things go well for you and feel free to ask if you have other questions.

My DS (2.6) is moderate to severely deaf in one ear. He has balance disorders too although it's unclear whether these are caused by his deafness or muscle wasting. He hears fine in quieter situations but can't hear at all in noisy ones.

NDCS is very helpful. Also the teacher of the hearing impaired has been fab, giving lots of practical advice. A referral to these teachers does not always seem automatic, so it's worth asking for one sometimes if it's not offered.

Geogteach - good luck with the assessment. We are amazed everyday at our daughter's CI.