friend has just been told her son may be deaf.

[misdee]

my friend and her son are involved in an uni study involving prem and full term babies. yesterday they went for another ctudy at the uni, and they said that her son doesnt seem to resond to low frequency noise. he only responds when u call him loudly, he stands very close to the tv to hear it. he is 18months old, licks every toy, and has started spinning. i have mentioned his behaviour b4 to my friend, and altho she is concerned i think that now the uni study has also picked up on it, she is very concerned. she is just hoping he is just ignoring her, and i hope that is the case too. the hv have now referred him to audiologigy, so now she has to wait for that appointment. i'm just wondering what support i can offer her at this time. i know my sisters dd has hearing loss, (hi M!), but i want to know how to offer support as a friend rather than as a sister.
any suggestions.

But my DD1 is still waiting for a hospital appointment. We were refered back in Feb. Audiologigy pick up that she has High Frequency Hearing loss.
No advice, just tell Debs to be patience as Stevenage take ages to sort it out!!!! And I am here going through the same thing if she needs to talk about it......
And the best thing to do is to be like a sister to her, you do ok supporting me with each blow

hey, she does a good job supporting me in the mornings when dd1 has been up all night, she comes down, pops the kettle on and watches the kids while i have a shower. hehe. i must be the world worst orangized mum in the uk some days. sometimes its 11am and i'm still bleary eyed trying to get going.

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Robin, my DD1 has PVL resulting in nerve damage and Cerebral Palsy. Her ears are clear and there is no fulid on the drums. Her left ear is dull and thicken, but her right is healthy. The docs suppect that she has progessive hearing loss and will lose her hearing. and to have to wait is driving me mad, everytime I phone up I keep getting told that there is a very long waiting list for the under 3s (well, she was under 3 when she was referred, she is 3.2 now) Unfortuntly for us, she is not outgrow it!!

What's all the for . Being deaf is not a death sentence. You would not be so upset if he spoke french, spanish or german as well as english would you so why be upset that he will (hopefully) be bi-lingual in english and BSL? He will live a full happy life doing what he wants to, he will have friends and will adapt to living in a world for hearing people. I do not feel I have missed out on anything. I can bring up my 4 children on my own. (DP could adjust to a world with out sound!) I have a baby alarm thatlights up when they cry, my doorbell flashes, my alarm clock shakes under my pillow and my smoke alarm has been linked to my alarm clock and doorbell so that if I am asleep it will wake me and if I'm not I will see it. I have very few problems. I can lipread and speak and very few people know that I have been deaf since I was 8yo.
Misdee it's your friends tun to adapt. If her DS is deaf then it will mean that she has to make a few adjustments. It's not the end of the world!

It makes me really cross to hear how people are treated when question marks are raised and they are left hanging in mid air and worrying. It is possible to test a baby's hearing in the first few days of life and, although this would obviously not pick up any progresssive conditions, it does at least highlight an immediate problem and provide a baseline assessment to which future tests can be compared.

This was not available to me when ds was born, although I have some hearing loss myself, he passed the 8 month "check" but was still left with doubts until I asked a paediatrician to categorically rule it out with a audiology test at 4.5. His behaviour at school was indicating a possible problem. He found some fluid in the ear (it was mid winter cold season) but otherwise fortunately he is fine. His behaviour was just typical of a child his age focussing on what interested him and not necessarily the task in hand. With dd she was routinely given the baby check at 3 days old and is fine, although now at 2, possibly oversensitive to certain frequencies. My relief at knowing she was ok from such an early age was immense. If there is a problem the earlier it is diagnosed the better as from the experiences of other Mumsnetters waiting for SALT can be frustrating too.

My own hearing problem was not diagnosed until I was at school and not concentrating or learning well - possibly hereditary or caused by mumps but it was too late to determine.

As regards your friend misdee I think you should be prepared to be just that and listen/sympathise. Perhaps offer to sit with your child and hers to read a story and encourage them to talk about it together. It may be that the fears are unfounded and he just needs drawing out of himself and simple focussed conversation may help ; speak slowly and directly facing him. Presumably the extent of the problem, if there is one, is not known but in the future one of the tips a friend of mine was given is to avoid cartoon type tv programs and focus on the ones with "live" presenters as deaf children learn to copy the mouth shapes.

You sound like a really good friend to be so concerned.

hth

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i just cant believe that the waiting list is soooo long. surely the sooner problems are picked up the better for the child and family. she hasnt been given any advice on what to do in the meantime, and seeing this appointment can take as long as 6-12months to come thro (maybe longer), and he is only 18months its going to be a long old wait. as far as i am aware they have ruled out glue ear, he has only a few words in his vocab (bout 6 i belive), and as her ds is her only child she doesnt have much to compare him too. he walks well (was walking at around a year old) but it just his hearing she is very concerned about. he will sleep thro neighbours loud music but as soon as the bass comes on he will wake. (see my posts under noisey neighbours in other subjects)

Me and misdee are sisters and the girl in question is a friend of mine too.
Rainbow I am sad that she is slowly losing her hearing and I do feel but she has CP, eye sight problems, behavourial issues, hearing loss, severe Speech and languages delays, and overall is about 14 months behind........so yes I have the right to feel if it was just hearing loss I could handle that with ease.

with mieows dd, its like 'how much more can there be?!' it seems she is always facing another problem, gets over one disnosises, then faces another straight after. one of our cousins is deaf, she also has CP, its just one thing after another atm.

A 6 word vocab at 18 months is not unusual, especially for a boy, as long as his understanding seems ahead of this. If he is a physically capable child (early walker etc) then he may come later to communication skills - certainly true of at least 2 boys I know who had very limited vocab at 2 but are talking adequately at 4. Perhaps your friend could work specifically on this using a particular system - I think Baby Talk has come up on here recently - although have no personal experience of one.

misdee - why doesn't your friend start using a few makaton signs? If there is a problem then I think makaton will be fine as I think it is based on BSL (am I right rainbow?). Makaton Dave videos are great- both my boys love them. If there isn't a problem it won't do any harm either.

rainbow makes some good points- I already got into a fight on mumsnet about that issue though! However I do agree that not knowing is dreadful- a least you know what you have to handle etc.

You mentioned that your friend's ds spins and licks toys- is that done in a worrying way- or do you think its just normal? (Just wondered whether mentioning it meant it was worrying your friend- obviously it can be normal but it can also be a red flag for other problems).

he is just 18months old now. his spinning is something new, maybe he has just realised that he can spin and not lose his balence. every toy goes in his mouth, gives it a lick then puts it down. i know it can be a red flag for other problems, he always seems a bit in his own world, he only really interacts with my youngest dd, they both sit there giggling at nothing in particular. (my dd is 6 months younger). i dont have any real experience of boys at this age (mieows ds has CP he is the only nephew i have) so dont know what behaviour is normal. how would my friend find out about makaton?

Misdee, does he hear the bass through the walls? That's low frequency, so perhaps that can reassure your friend that he hears it well enough?

My son at 23+ months doesn't yet say 6 words. From all I've heard, it's understanding and other communication that seem to matter -- some kids are just slow talkers. That having been said, I've gotten the Baby Talk book (thanks Jimjams) and will start using it any day now....

Good luck. Don't worry about acting like a sister rather than a friend-- from what I've read about you both, you and mieow, as sisters, are the ultimate support for each other.

bloody hell just deleted my message aggghhhh

Anyway have a look at www.makaton.org I haven't read it but it looks good. I got makaton dave's video from amazon but I think any video/book shop would order it for you. The new BBC programme looks good as well. I'll be videoing- wonder if that's with dave!

Deos your friend know that spinning (esp without losing balance) can be a red flag? I wouldn't want to worry her about something she wasn't worried about iyswim. Is he one of the prem babies? If so he could just be delayed I guess. If he is a prem baby does he have a paed?

How's the rest of his language development? Speech really isn't that important. Does he gesture or - especially- point?

Sorry firing lots of questions at you- only becuase I know you're not the mum iyswim.

Ds2 is 19 months. He says Da-da a lot- which he uses to mean anything - just with different intonation. I'm absolutely certain his speech is delaye din realtion to the charts. However having seen language disorders up close- I can guaratee that ds2 doesn't have a language problem so at this stage I;m not worried about his speech iyswim. People get very worried about speech but in a child under say 2 and a half the rest of the langauge development is far more of an issue.

As far as helping your friend- just be there- help her navigate the whole investigation thing. I wouldn't say too much about what you actually think the problems could be.

Do you have SALT drop in clinics near you. it might be worth getting him onto a waiting list- the HV can refer. It's just it can be a port of call for further investigation if needed and appointments take so long.

he doesnt hear the bass, it vibrates thro his floors, u can feel it if u walk into the flat and the people below have the music very bassy.

he was full term.

ahh full term makes it more worrying.

Do the uni people know that he spins without losing balance?

SOunds like he needs an audiology test asap. They can be done quickly- I got a double quick referral for ds1 (waited about a month) after a query was raised by a SALT. Maybe the study people could oull some strings.

In the meatime I would go to GP to check for glue ear. Ask him to do a simple hearing test- they may be able to fast track him.

Also ask for a referral to SALT. (almost anyone can refer). Does he point?

the waiting list here for audiologoly is appauling(see mieows post below). she has said she will accpet an cancellation appointment which may mean she gets seen in 2 months rather that 6+.
i havent noticed him pointing. he spends a lot of time round at mine, but i cant say i have seen him point.

misdee- have a look for the pointing next time he's round (especially pointing to things of interest). It's really hard becuase there are things in your post that I find far more worrying in your post than the possibility of hearing loss. The problem is of course most HV's GPS's are too dozy to pick up on early signs of problems and the last thing I would suggest you do is worry the mum if there's no need to worry her iyswim. If he's not pointing he really needs to get on a SALt list asap as the waiting lists are dreadful- but its really hard to do think of a way to suggest that to your friend without worrying her. I wish HV's would be given some training in picking up devlopmental problems (isn't that their job after all).

keep an eye open for the pointing. I'm hoping you'll post back and say he points all the time..... Perhaps you could ring and find out whether there are drop in SALT clinics then suggest your friend pops along.

I said that we accept a cancallation we are still waiting
Connor (friends son) doesn't point does he? Just crys alot!!

Ps I have all the Makaton signs here, I'll copy them for Debs

also there is going to be a series of Makaton childrens progammes, Thursdays BBC2
10.20 to 10.35
11 sept
18 sept
25 sept
2 oct

my dd has started pointing (1year old), my friends ds doesnt seem to. he isnt very vocal, cries a lot or else is very silent (goes between the two really), tho not proper cries (hard to explain). i have had worries about his behaviour since we moved here (april), but have known my friend since i was about 13. its a delicate situation, but with mieow we blurt out any worries we have about each others kids, and we discuss it, i dont think this would be the best approach with our friend.

I don't think blurting would be a good idea at this stage either, misdee, unless your friend is candid about her worries first and mentions autism. It's very rare for autism to be diagnosed before 2 or 3 and not just because many people wouldn't recognise the signs if their life depended on it, as jimjams rightly says... It's also because of the obvious- children do things at different rates. I understand that some doctors will not diagnose before 3 as policy for this reason. If he's consistently not responding to name, spinning and not pointing then that's certainly worrying but if she takes him for an assessment now they'll probably tell her to come back in 6 months, and at that subsequent appointment they'll tell her to come back in another 6 months, and so on, until they're sure one way or another. Very frustrating for parents, who tend either to know for certain in their hearts anyway and be keen for official diagnosis or to know nothing about autism but realise that their child is different and become increasingly upset by being given a series of brush-offs with no information. There are no easy answers really...

You and miaow sound like great friends and I think you can support your friend by just carrying on doing what you're doing- being there, providing a listening ear, giving your opinion tactfully and sympathetically but not offering too much unasked for information, remembering to notice and mention all the positive things about her son which may get overlooked by others in all the worry. Also by reassuring her that just carrying on being a loving mum is one of the best things she can do for her son, even if his development is delayed in some way. That's really true by the way, IMO & IME. I really agree with jimjams that attempting to boost his communication skills can do no harm at all, whether his development is normal or he has hearing loss or autism or something else entirely. Makaton could be very useful, as could your friend using her unique knowledge of her son's likes and dislikes to help with his communication. Can she eg: join in with his spinning and try and make an interactive game out of it? Or get his attention with a favourite sharing toy or activity- blowing bubbles and balloons are the classic choices- and encourage him to communicate by waiting for a cue from him- eye contact, guiding her hand to the bubble wand or balloon, signing or saying "more", depending on his level- before she blows more? Good luck and HTH.