DD1 failed her hearing check AGAIN!!!!!!

[mieow]

As some of you will know, I have 2 kids with CP and a baby of 16 months, well DD2 (aged 2.8 years) failed a special hearing check way back in April 2001, somehow passed her 8 months hearing with the HV but we have had concerns since, eventally we managed to get another appointment,which we went to today and once again she failed on the higher sounds. The doctor feels that it is down to nerve damage, like her CP and eyes, and she will proberbly need a hearing aid. I am gutted!!!!

[lou33]

Mieow I don't know what to say. Ds2 as you know has cp too, and failed 4 hearing tests in a row, then got an all clear. However it was in a place I have no faith in, and he is due another one at our new centre just to be sure in a few weeks, so I am feeling nervous about it . Just wanted you to know I feel for you and your daughter. Take care.

[Jimjams]

sorry to hear that mieow. At least they have picked it up early - got to be better than only finding out much later. I think the hearing aids these days are tiny. Let us know how she gets on- I'll be thinking of you. You have reminded me Ds1 has failed several hearing checks on what I call the swishy sounds- could be relevant as he can't speak- he's meant to be having three monthly checks- last one was over 6 months ago. I had totally forgotten. Better do some chasing up.

[Caroline5]

Sorry that you've had bad news mieow. Dd2 (who has global developmental delay) has also failed 4 or 5 hearing tests now, she doesn't respond to quiet enough sounds to pass. Hope you get the treatment and attention you deserve soon.

[ariel]

Dd (5) has cp and hydrocephalus and has hearing tests every 4/5 months, she has failed as many as she has passed, she has got slight glue ear and may need to have a gromit fitted , she also has slight problems with high sounds and also if there are alot of sounds around her she sometimes cant define where they are coming from. Her doctor said she is sure her hearing problems is down to the glue ear, as it tends to go in the summer but come back in the winter.

[Jimjams]

aaggghhhh Saw the SALT today- and "demonstrated" ds1's speech sounds. She said he has the weirdest systme she's come across (not the first time I've heard that). She also thinks it is likely that he can't actually hear all sounds as he isn't making sss, fff etc sounds and has failed his hearing test on swishy sounds twice. I HAVE BEEN SAYING THIS FOR A YEAR!!!!! It's only now that we have a really good SALT that it's being picked up. Up until now all I've been told is "of course he can't speak he's autistic" even though I've been trying to explain the difference between "can'" and "won't". Aaaagggghhhhh. Anyway I'm fed up with this cr** - I've been on the phone to BIBIC and I'm going to arrange to go there, get properly assessed (he needs a proper OT assessment as well and they can do that there as well) and get a good home programme going. I'm so grateful to the SALT- she does one thing the other's haven't- she listens!

[hmb]

Arrrrgggghhh on your behalf! It must be so frustrating for you, and such a waste of time for your ds. That seems to be one of the big problems when a child gets 'diagnosed', everything is put down to the condition, without thinking. I hope that things get moving for you and ds soon.

[lou33]

Jimjams, where do you live? Your services (or lack of them)sounds like Bedfordshire where we left recently.

[Jimjams]

lou- Devon- mind you it wasn't really any better in Bromley. I think we'd stil be waiting for a dx there. from talking to friends camridgeshire sounds pretty good- perhaps we should all move there!

[lou33]

It's getting pretty rare to find a quality of service to be happy with. Luckily where we are now in Surrey they seem to have excellent special needs services. I've probably jinxed myself now!

[Jimjams]

lou - I get the impression that Surrey are pretty good with autism as well- seem to be quite a few specialist schools etc in the area, and a very active local NAS group. Don't think I could afford Surrey now though

[deegward]

Mieow, don't know if this will help....my nephew NEVER passed a hearing test in his life. He is 6.5 and only last week was registered deaf and given a hearing aid for his only slightly workinbg ear. This has changed his life!

He says things like, whats that clicking noise (car indicator), whats that hissing noise ( boiling kettle) etc etc. A whole new world has been opened up to him, and my brother and sil are only sad that it has taken this long for any help to be given to him. They have campaigned since day one.

When he started school they knew he was deaf in one ear, and was appointed a support teacher, but now, carpets have been fitted in his classroom, as well as speakers.

I think all I am trying to say, yes we would all love our children not to have to wear glasses (like my 2.75 ds) or a hearing aid, but it really make a world of difference to the child.

[MABS]

Mieow - only just read your post - so sorry you're going through all this. Thinking of you , btw my ds with cp is left hemiplegic - if you don't mind me asking , are your children similar ?

[mieow]

Course I don't mind............love to talk about them. They have Spastic Diplegia CP (legs) Walk funny and can't walk far but they get about. DS is 5 and DD1 is 2.8. We have been told that we have a Genitic Multifactorial Predisposition we have a 1 in 10 chance of having another child with CP

[lou33]

Mieow ds2 is also sdcp, as i've probably already told you, but can I ask when yours started walking? Ds is 2 in a few days and still can't even sit up properly, and commando crawls. He seems a long way from walking yet, but I would be interested to hear when yours did. Ds also has a very curved back which is due to the fact his tighter muscles are pulling him forward combined with weak muscle tone in his trunk.

[mieow]

Lou33, Ds was 18 months old when he walked but we had to move his left leg into position in order for him to do do. DD was 2.1 when she walked. DS had a curved back too and didn't sit up at all (He w-sits) and still can't long-sit. DD had a K-walker from the age of 16 months which she used for ages and then she walked about 7 months ago. We have to go the wheelchair clinic this week for her assessment........fun!!!!!!!!!!! DS has modarate CP and DD has mild CP. They both have a lot of other problems too.
We got DDs DLA through today..... are you recieving this????????? We have been awarded the higher rate for care and mobility for 5 years.

[lou33]

Ds w sits too, but it's not allowed technically by the physio, so she has given him an adapted bench to try out, which makes him "chair" sit in the correct position. He can't long sit yet either. He was recently given insoles to try and stop his toes from curling, but will probably need dafos splints they said. I didn't know they provided wheelchairs so young, I thought you had to use those massive buggies. Ds's physio has said however well he may walk eventually (although we don't know if he will), he will probably need one at some stage. Good luck with that btw.

We are getting dla for ds at the higher rate , but it's under review at the moment (don't you hate having all those forms to fill in?), although I don't expect there to be any problems, he's actually doing less in comparison to other children of his age than he was when we first got it. Hopefully it will be extended for longer than a year this time. I didn't know you could claim for mobility at this age though, I thought you had to wait til they were 5. I might check it out. Thanks for replying!

[Jimjams]

I hate dla forms. You can claim for mobility from 3 providing the child gets the higher rate. For lower rate it's from 5. DS1 (autism- three and a half) gets higher rate for care but nothing for mobility. I suspect that when he's 5 he'll be able to get higher rate for mobility because then there'll be a big difference between other children of that age and him, at the moment there isn't realy iIYSWIM (ie you have to be careful with all 3 year old's round traffic)

isn't it depressing though filling in page after page. "How many minutes?" etc etc I just kept writing "All day- all the time"

[Jimjams]

Just thought I've been awarded dla for a year- funny that as autism is a lifelong disability maybe they know something I don't. I've kept the forms I'll fill the same stuff in again (all 72 pages of it (at least it felt that long!)

[lou33]

Jim jams it's the same with ds and his cp, it's permanent but they only awarded him it for a year initially, and now it is up for review. Maybe they think children will "snap out of it" as they get older!

I knew the ages of 3 and 5 were somewhere in the mobility rules so thanks for clearing that one up,saves me going to look. I will try and apply for mobility when he is three then, I should think he would qualify as he can't walk, although they do make it very hard to claim I hear, so I guess I shouldn't assume anything! It's still a year away though, ds isn't 2 for another 9 days.

[mieow]

I know Jimjams, CP is a disablity for life too, maybe they think that the kids will get better one day or maybe they will find a cure , DD will proberly get a Major buggy like DS (at this rate I'll have the two older ones in buggies and the baby (16 months) running alongside me!!!!! LOL) We have to go to the wheelchair clinic as that is where the Buggy clinic is held.

We also have been told that DS will need a wheelchair at some point in his life (possibly his teenage years) as that is when the weight piles on and the already weak legs can't stand the weight. GOSH have discussed getting him a small wheelchair soon as he is 5 now and hates the buggy and also he can't walk far. Well we'll see.........

[mieow]

PS they only award the care till the child is 3 then they review it to see if the child can get mobility as well, then I think the max. time is 5 years for a child as both DD and DS have been awarded their DLA for another 5 years.

[lou33]

I thought that was the case, but thought the rules might have changed without me noticing!

[MABS]

i too hate the forms, but it was thanks to Lou33 that I even knew it existed .. DD was awarded middle rate care dla last year until 2006 !!! and we were told that the mobility part will be looked at when he is 3 - October this year. Does that sound right to you? BTW Mieow may you be eligible for ICA as well?

[lou33]

I guess I have my uses then Mabs!

Am not too sure they will "look" at it as such, but more likely you will be sent another form to fill in if you want to apply for mobility. I haven't had to do that yet, dd never qualified for it and ds is too young, but I know they are quite strict about who gets it.

Ica is awarded if you get the middle or higher rate of dla. I think it's about £47 a week (sorry dont have my info to hand) or thereabouts.