DC with hearing impairment

[HollyMadison]

Hi. My DS (18 months) has just been diagnosed with mild to moderate hearing loss (although looking at the test results it looks more moderate than mild). Cause unknown. No-one else in our families that we know of has a hearing impairment and it was a bit of a shock. It is permanent nerve damage so he will need hearing aids.

I have many queries and would be so grateful if any parents of DC with hearing impairments (ESP mild to moderate loss) could spare a couple of mins to share their experiences. I know every child is different but I'm wondering...
How did your child take to his/her aids? I hear that sometimes they don't work or children do not take to them well as they make everything much louder than the child is used to.
In terms of speech development, could we expect/hope that by say age 5 he will be speaking like any other 5 year old? Later or earlier than that?
Even with the hearing aids, are lots of adjustments necessary at school and in general life?
My DS is a very active toddler and constantly throwing himself about. Do Hearing aids malfunction much? How many would you expect to need for a pretty crazy boy in say 5 years?

We are not currently in the uk but we are eligible to return for NHS treatment (we will probably have to fund the costs in the country we are currently living in) so I am going to start another thread about NHS timeframes/ range of hearing aids etc.

Thanks in advance for your time x

I'll send a couple of posters who have children with hearing impairments over.

What was your ds hearing loss measured at?
Both of mine have a hearing loss of 60db, with aids their levels drop to 20-25db across the frequencies.
The general rule is that they take a little time to get used to it so it's a slow start over a few weeks.
The ear molds are taken by the audiologist. Make sure that there is enough length left for the bit that goes into the ear canal. This is to help that the ear mild is a good fit. We also use a little bit of Vaseline to help the ear mold stick into the ear better. Make sure you get into the habit of changing the batteries weekly.
Children at this age will crunch their hearing aids or lose them. Get some safety lines to attach to clothing do they don't get lost.
In terms of language development, make sure that he faces you when you speak to him. You might want to try some Sign along or Makaton until he has got those signed words in a speech form.
I would also enlist the help of a Speech Therapist.
HTH.

My DD was born profoundly deaf, she's 6, has cochlear implants and her spoken language is above average for her age .

She had hearing aids as a baby/toddler, we had problems with her taking them out when she was small but by 18 months she was fine with them. There was certainly an adjustment period, once we got aids that were loud enough to make a difference to her, where she seemed more tired and irritable but it didn't last long.

We went through a few sets of hearing aids but that was down to finding a set that suited her (she's very profoundly deaf) and then being able to swap for another colour. I think we managed to actually break one set. I guess you'd have an ongoing expense of having the ear-moulds made, DD needed a new set every month or so at about that age, my friends DS was having them made every 2 weeks - it all depends on how fast they grow.

We did some pretty intensive auditory verbal therapy with AVUK to help with DD's spoken language. She had age-appropriate speech by the time she was 4, which was pretty good going considering she didn't get her implants until she was 21 months, and she had heard very little in the way of speech sounds with her hearing aids. DD also had speech and language therapy (mostly pretty useless TBH) and a teacher of the deaf (also pretty useless). She also had full-time one to one support at preschool, although only for a year, when we moved to a new nursery she managed fine with no additional support.

We home educate now so I don't have much experience of dealing with schools, some HI children use a soundfield system, some use an FM system. Some need additional teacher of the deaf support to make sure they have heard everything, some don't. I know when DD was younger there was talk of her being prepped for lessons, so if a book was being read to the rest of the class she'd get a chance to go through it with her one to one beforehand to make sure she could follow it later.

Sorry for the massive essay, there's a lot to deal with when you have a child with a hearing impairment. I hope some of it has been useful.

You could also check out the NDCS they have loads of information and also a very supportive message board if you have any questions other parents might be able to help with.

Thanks for the response Sally. I'm not sure how to to phrase the level of loss. Looking at the charts on the test results, he can hear to 50db across the frequencies but not higher than that (higher being lower numbers). So 25db means your DC hear in the normal range with their aids doesn't it?

We are already seeing a SALT who I think is good. Do you mind if I ask how your DC's speech development went? With adjustments, have they got to the stage when their speech is like that of their non hearing impaired peers and how long does that tend to take?

How do they find a structured learning environment?

Oh thanks ornellaia - that is really helpful. Thanks for writing so much. Your daughter has clearly been doing brilliantly!! It sounds as if there is a lot more support he might potentially need than I imagined. I'm a bit scared about cost, amongst other things.
I will read your post again and digest....

I'd second the ndcs, they really are fab, they do newly identified weekends if you're back in the UK when there's one running.

my dd3 has a moderate loss in one ear (profound in the other) and her moulds lasted a couple of months at least at that age on that ear. The range of hearing aids available to you will depend on what your pct provide, they all have their own contracts and prefered makes and not all aids are suitable for all types of loss and to make it easy to look up aids will have a different name if you buy them privately to if you get them on the nhs. But you should be given a choice of colour, same for the ear moulds which all help with getting a child to wear them.

dd3 wasn't great at wearing hers at that age, she liked pulling them out and flinging them around, so some kind of retainer clip is a very good idea, they usually give you a kit with the hearing aids that will have one in. We went through a fair amount of equipment at that age due to loss or breakage, it happens and is fairly much expected, there's plenty of small fiddly parts to lose!

I can't comment on speech development as my dd3 has many other needs and it's not been straight forward but we had an excellent teacher of the deaf but I guess if you're not in the UK things will be different? My dd3 is at a special school, she uses a radio aid there and has found it really useful

Holly. One of my friends has a ds who has a sensorineural loss of 70db. They did Auditory Verbal alongside SLT and TofD.
My children have additional issues where speech is concerned, so I can not really answer that question.
The NDCS were brilliant for us with equipment loans of audiology equipment, i.e. leads to attach aid to iPod etc. you can also test out FM sets to see how your son copes with a teachers voice amplified. My DD preferred the sound field system over the FM system. She went from FM, then sound field and back to FM. Boy does she moan about that!!

Ds1 is also deaf. He was diagnosed about 2.5. He started off similar to your ds but is now profound (age11) . He has always worn aids with no problem and has age appropriate speech. Ear moulds are a problem when they are still little and you need to find a reliable place to have them done. My ds has had ent problems so needs to see ent regularly but apart from annual reviews hasn't needed speech therapy. He has radio aids but managed primary without 1:1 and above average achievement. He will have more support at secondary for note taking as he can't lip read and write at the same time. We recently had a 'sound advice' assessment at the Ear Foundation in Nottingham which I would highly recommend but you do need to pay. Check out the NDCS website and especially the parent place bit where you can chat to other parents.

Thanks everyone for your responses. You're very kind and helpful. I guess I've been a bit naive and I now realize that there's a lot more to think about than I originally thought. My DH and I have some big decisions about where we spend the next part if our lives and this is now a major factor.

Hi HollyMadison , My DD (2.4) has hearing loss that ranges from mild to moderate depending on the congestion in her ears (she has something similar to glue ear), at its worse she has a hearing loss of 60db.

We started signing with DD when she was a baby, with help from her SALT (& Mr Tumble ) and that has really helped her communication. Despite her learning difficulties (she has Down's) she now has communication skills that are on par, if not slightly ahead, of her NT peers.

Because DD deafness is caused by congestion, there are also periods where her hearing is better and she only has moderate deafness. During these periods DD is able to pick up words as well as new signs.

In the past few months we got hearing aids which help, but are a challenge to get a toddler to wear! Because of this we've also been trying all sorts of other things that we saw on the NDCS website that may help (olive oil in the ears, goats milk rather than cows, using Vicks at night to keep her chest clear) - obviously only try this if your DS deafness is due to congestion - but for us something something seems to have worked, and for the first time ever DD has good hearing (at 25 db)! this is likely to only be temporary, but it may be worth you looking into.

HTH

Sorry, just re-read your initial thread properly, so ignore the goats milk etc advice.

Would definitely recommend you try signing though, as this has made a huge difference to DD both in terms of her communication but also her ability to pick up words - it took the frustration out of learning, as she tends to learn the sign first and then picks up the word later (even when she learns the word she still signs whilst speaking, as do we)

Thanks for the response proudmum. I have a stupid question..... When people talk about using signing with HI infants, are they referring to British sign language or baby signing? Or are they the same?

Not a stupid question at all . Baby signing uses (mostly) BSL signs, but none of the structure/grammar of BSL. So you might say "do you want some milk?" and use the sign 'milk' while you're saying it. In BSL the signs would all be in a different order - I don't know BSL so I can't be any more precise than that!

We used sign supported English with DD pre-implant - a bit like extended baby signing, we'd talk to her and sign the key words at the same time (so we might would have signed 'want' and 'milk' whilst asking the question). Everything was in English word order but the signs were helping her to follow what we were saying. It also helped that she would sign things when she started talking to us, because of course at first the words weren't very clear, but the signs helped us to understand what she was saying and avoid frustration for her.

One of my friends would sign every word with her HI DS (signed exact English I think it's called), but again in English word order, so not quite BSL. Some people manage to combine BSL and spoken English and have a fully bilingual house.

The way you do it is up to you.

Signalong has more words than makaton and was developed apparently by two speech therapists at my ds special school! My LA used to use Makaton, but have switched over to Signalong.

ime people who have children that are 'only' deaf generally use BSL/SSE, the reason being that should they wish to become part of the Deaf community (assuming they are not already) then they would be able to, also if the child goes to a HI base that uses total communication they would be able to communicate with their peers. But, it's personal choice and you use what works for you as family. Makaton is based on BSL and from what I've seen, so is signalong so there's not massive differences in what you'd use at a young age.

First, don't panic! It is all v overwhelming on diagnosis and there is a lot to take in. After 6 months, I felt like I could become an audiologist, I had researched so much...
My dd was the first Deaf person I ever met. She is also 6 with an implant - snap to Ornellaia. She is very profound and never got any sound with hearing aids, despite 2 years of wearing them. Her first language is BSL and she was implanted a couple of years ago.

At the levels your ds is diagnosed at, he should get good use from hearing aids. He will potentially, however, hate them for a while ages - I am sure I am not alone in having played the endless game of replacing the hearing aid/ panicking she had swallowed the battery etc. It gets easier...

Good luck with it all. It is a huge learning curve, but it becomes a weird normal after a while

Holly, I'm not an expert by any means but my godson is Deaf with aids and uses sign supported English in a MS school. Just wanted to mention DLA, disability living allowance. I think the NDCS can help with filling out the horrible form, but my godson gets it. May be worth looking at to help with private therapies etc.

Thanks for responses. I think I will look to try some signing for the key words. I'm a little wary as I really would like his spoken language to progress. At the moment I am doing quite a few actions with him for words - I hadn't thought about it as signing! - and he loves the actions and will do them but won't attempt the word. I guess that is probably due to his hearing loss. Hopefully that will change with the aids. Thanks everyone. I will no doubt pester you with more queries as things move along. Right now I'm very up and down with my emotions too. Have a lovely day you kind people x

Sorry that came out wrong as I'm very tired:(. I'm not wary of signing, I'm just keen to progress his spoken language once he gets his aids. X

Hi, my dd has a severe/profound loss. With HAs. she had a later diagnosis than your ds. not going to risk outing myself but feel free to pm me she's had her HA for nearly 2 years. And has speech level of a 2yo. She is a long way behind her peers. but it is expected that she will have caught up in another 3 years.

NHS audiology have been great, and replace HAs the same day when she breaks or loses them. We have a choice of colours of both aids and moulds, but had to request them the 1st time.

We sign, which i feel aids communication, especially through the 'terrible twos'.

Hi. My dd2 (7) is mild to mod deaf. She was diagnosed late at age 3 and has worn hearing aids since. To be brief (on fiddley iphone tonight): her language was delayed at first but she now is a chatty girl with perfect quality of speech, above average at mainstream school. She wears her aids for school and uses an FM system. Even without her aids in no one ever suspects she's HI as she can still hear and she lip reads (self taught) to fill in the gaps. She can actually tell me what people a distance away are saying by lip reading, which is handy sometimes

There's lots of good advice above, but I just wanted to add that i can understand why you want to focus on your DS speech, we were the same when DD was first diagnosed. It was her audiologist who first suggested signing, as all the research suggest that if you sign whilst saying the word it can actually help speech development - our local SALT now send all parents on a signalong course when DC are toddlers, so it may be worth seeing if there is something similar nr you.

I used to post on Mumsnet a lot, under a different name. DS is 4.5 has moderate loss, and has had hearing aids since he was six months.
I would get the clips to attach the hearing aids to his clothes. The received wisdom is to keep putting the HAs back in if they don't like them at first.
DS has started taking his out and leaves them on the floor at the moment, he doesn't wear them much in the house. For some reason he has decided he doesn't like them unless it is for his benefit (TV related).
His pronunciation is very good, but he is not a great communicator. As it happens we had a paediatrician appointment this afternoon and she confirmed that he is on the autistic spectrum. Sometimes it was difficult to know if he couldn't hear or was ignoring us, and which behaviour was down to hearing loss.
For us, we didn't want to use sign in the beginning because we were told he had a lot of useful hearing. Now, I think it would just confuse him as he is struggling with social communication anyway. Although we go to a preschool for deaf children so he knows signs, but doesn't use them in everyday speech.
DS definitely searches out our faces if he wants to hear something so make sure your son is looking at you if you really want him to hear you.
Like you, no one is deaf in our family.

Can I ask, which country are you in?

Hi - not my DC but me who has a hearing impairment (moderate to severe). I was diagnosed at about 2.5 and had HAs then (still do, obviously).

With a mild to moderate impairment, your son will be talking just like anyone else by 5. I was (apart from a slight lisp on 's' sounds which I don't hear - but even that is only noticeable to a few observant people).

Hearing aids are reasonably rugged. I presume your son will have digital (they are much better). Obviously I had analogue aids as a child. I did every kind of sport you can imagine, without problems (apart from once when I fell off a pony, my hearing aid came out, and the pony trod on it - actually, even then the hearing aid survived the experience.) The biggest enemy is water - you have to take them out for swimming/waterski-ing, that kind of thing.

In my experience, hearing aids rarely malfunction. You do have to take the time (and possibly repeated visits to the audiologist) to get the settings fine-tuned for your DS's specific needs. Although again, digital aids seem to be better for that than analogue.

Your son will not need to use signing to communicate. However, I agree with the earlier poster who suggested signing in conjunction with speaking to aid communication. I suffered from massive frustration (and consequent awful tantrums) as a toddler because of not being able to get my message across or fully understand someone else's. Signing can take that away, like magic, and research has shown that it actually improves language acquisition if done in conjunction with speaking.

You yourself will develop (if you don't have already) a wonderfully clear speaking voice. My mum can be heard across three counties (without in any way shouting - she projects!) Actually my 4 yo DS is developing the same kind of voice too!

I really think that with a mild to moderate hearing loss, you/your DS will find it easier than people with a more severe loss. Don't worry too much. I expect that in his adult life no-one will know he has a hearing loss unless he chooses to tell them.