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.

ohh no no no- don't say anything to your friend at this stage unless she is worried as well. It's really hard. Even if there is something wrong (and there may not be) the professionals will take ages to get themselves round to that idea and it will take ages for anything to happen and in the meantime the poor mum will be left to worry herself sick.

I have recently been in a similar situation with a friend (although her child's problems are very subtle). I've answered her questions, and suggested places she can go to ask for help- and referals (which she has done). I've always been very careful thought to point out that a lot of young children go through a kind of funny phase before everything clicks.

If your friend begins to wrry- but follow her lead on this one- if she begins to have concerns about his development and seems like she wants to take this fuirther you could introduce her to the CHAT test. If he doesn;t point he will fail the CHAT test and she could then use that to get her HV to do something useful (like refer to a paediatrician). However, I wouldn't show her that chat test unless she starts asking questions herself or it will frighten the life out of her (I cam across the chat test wehn ds1 was 18 months and spent the next few weeks as a gibbering wreck- and still we didn;t get a diagnsis for another year and a half- and we were only seen then as ds1 had no speech).

Tread carfully and be there for her!

CHAT test is here:

www.autismndi.com/chat.htm

To pass they have to be able to do section A 5 6 7 and 8 and section B ii iii and iv

BTW the CHAT test should be performed at 18 months (ie children should pass at 18 months). Don;t worry too much about the teapot any old pretend play will do.

Actually I'm going to have a rant now.

This really winds me up! The Chat test has been shown to be a very reliable indictor of picking up children at 18 months who are going to go on to develop autism or have a a language disorder (it misses quite a few as well- but if you fail the chat you know there's a problem). So here is a great screening tool. It's the ideal opportunity to get in there and do something intensively right at an age when a big difference could be made. If ds1 had been given intensive one-to-one ABA type therapy at 18 months then who knows what his language would be like now.

Instead I saw a series of prefessionals- starting at 26 months with a specialist SALT in autism- who told me that ds1 certainly wasn't autistic or if he was it was going to be "so mild" not to worry about it and we'd have a review in 3 months (when she must have known that that would mean 8 months) to see whether or not he needed to see a paed (another wait). Meantime of course nothing's hapoening and oh 3 years later has still hasn't had any speech therapy and he stil doens't undertand anything except nouns.

If it was an ideal world I would say tell your friend then get her to have intensive provision for her child from NOW so that something happens now and the chance to make the difference is seized. Unfortunately I know that it isn;t like that and if you do tell her now she'll just end up owrried sick whilst being brushed off "no dear he can't be autistic- see he looked at me" by a pile of ignoramuses who wouldn't know autism if it danced in front of their face- and anyway autism costs money . Agggghhhhh Even if she went in there guns blazing she wouldn't get any help- just a bruise from banging her head against a brick wall. So yes be careful about saring your concerns because she'll just end up in a black hole of no provision and no support, and horrible gnawing worry with nowhere to go. been there done that - it's not nice.

wow big rant jimjams!!! and i've just woken up. lol.
as my ex-dh said last night, our friends son just seems to 'float about' the flat, not really playing games with the others, he always seems to walk right behind me as well, practically on my heels, half the time i dont realise he is there and knock into him (i feel so guilty). i'm not gonna blurt out my worries to my friend, i can be subtle at time lol. i'm gonna mention trying makaton to her, even get my kids to do it as well. it cant do any harm really.

makaton's a good idea I think kids like it anyway - I know ds2 does.

Yeah sorry about the rant but I hate reading of people just stuck waiting when things could be happening.

Boys often interact later with other kids than girls, so that in itself is inconclusive. When I only had ds I used to mix with a group of mums from a post natal group, 3 boys, 3 girls - the girls would socialise and play cooperatively at 18 months - 2, whilst the boys would individually do their own thing casting a sneaky look at each other from time to time. Your friend's ds may need to be deliberately included in a game or activity rather than wait for him to get himself involved, especially if he is an only child.

It must be really hard not to jump to conclusions on her behalf but it is probably better not to put further doubts in her head at this stage than she suggests herself.

DS1 and 2 loved Makaton. DS1 has a profoundly deaf friend and I made sure DS1 could say hello, goodbye, please & thank you. DS2 could only manage biscuit and milk but he was 18 months old at the time. They thought it was fun so it's certainly worth using.

CBeebies used to have signed programmes (incl Tweenies) at certain times but this may have been BSL rather than Makaton.

Mieow - I was replying to Misdee and the 'boy'. What annoys me more than anything is the "poor you" attitude of people. I'm not missing out on life because I cannot hear, I am enjoying life, adapting but enjoying it. I can see why you are with hearing loss as an "extra" she doesn't need.
Robinw - I'm not saying a great friend is not a blessing but a deaf child can still enjoy life. People treat us as though we are stupid because we cannot hear. It sounds like you are mourning for the child's lost hearing. Instead be grateful that it is nothing life threatening. My Mum was. She was grateful I survived. My deafness paled into insignificance.(I was left deaf after contracting meningitis as a child.)

Soupdragon- it is BSL. Harder for a child to learn but at the moment more widely used.

Rainbow, that's exactly what happened to my friend's child (ds1's friend) just before she was 2.

great post rainbow I know very little about hearig loss etc but I've always been struck by how strong and powerful deaf culture is. I think Joe public doesn't realise that BSL is a language in its own right. I think they just think its english in sign iyswim. Hasn't this just been recognised in law though? Hopefully things will change.

Agree about the stupid bit. DS1 can't talk and people assume he's stupid. Grrr.

I consider myself very lucky. Apart from 2 fingers missing, one off each hand, and the fact that I am deaf, mengingitis has left me unscathed. I work with the Meningitis trust and have met people, young and old who have lost legs, arms or both. I met one woman who has raised 4 children (2 singles and 1 set of twins) on her own despite have no legs below her knee and no arms, one below her elbow and the other half way down her upper arm. She is really amazing.

I have jsut reread previous post. I have 3 boys not 4 and DH not DP is alcoholic which is why I bring up on my own virtually (but that's another thread)

Oops done it again sharing pooter with sister.

I started this thread a year ago.

friends ds has now being checked for aspergers/autism. she is waiting for a appt to come thro but it is lookign very likely he is on the spectrum. he has SALT atm, and she is starting to claim dla for his speech. she is comign over next week for loads of form flling. can anyone give me more info on sites we can check for her to help her son.

gotta go, gotta be back in hospital for 8pm.

Tell debs to ask the SALT to refer her son to Ludwick nursery if his speech is very bad

And I forget to inform you all, that DDs hearing can back normal!!! We were dischanged at the begining of the year