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Here are some suggested organisations that offer expert advice on SN.

DD is nearly 6 and still unintelligable. I can't stop sobbing(long)

(41 Posts)
pramspotter Wed 08-Oct-08 16:59:37

She has had bilateral glue ear and since she was 4 months old both of her ears have wept goo and stank.

She has had antibiotics, grommets and now a mastoidectomy. All have failed and the ears are weeping. Her speech is appalling

SALT keeps saying that there isn't much improvement speech wise and there won't be until her ears are sorted. All she gets is a 1/2 hour a week at school. She can speak single words okayish but a long sentence gets really jumbled.

Paed and ENT docs say that she isn't deaf enough to have pronounciation problems. They think that something else is he cause.

Her receptive language, reading, writing, and math skills are super advanced for her age. But my heart breaks when she can't make herself understood and she is becoming very shy and insecure.

SALT and docs keep passing the buck. I have have been crawling up their asses since she was 3 years old saying I think she has verbal apraxia. They have continued to blow me off. "Leave it for a year and see how she improves" "It's her ears" "Its not because of her ears". It will get better blah blah blah.

Now I have just had a letter from school doctor basically saying oh shit she isn't improving maybe someone should investigate further. Yeah no shit sherlock. She has been under the care of the half assed SALT, Paed, and ENT for YEARS.

She is 6 an very bright but sounds like a 2 year old. She also talks loudly and when others hear her I get shitty looks.

My 8 year old DS is autistic. I don't think she is on the spectrum. I just wish to know what the hell is going on and if it is going to get better.

It occurred to me today that if she is going to be 6 years old soon and things are still bad...then they might still be this bad when she is 20.

pramspotter Wed 08-Oct-08 17:09:07

They won't even consider doing another hearing test or sorting out hearing aids until her ears stop weeping.
But based on previous hearing tests they don't think that her hearing is that poor anyway. I think it probably varies but it isn't the whole reason for her speech probs.

Has anyone been through this? Did it get better?

dustystar Wed 08-Oct-08 17:15:29

Poor you {{{hugs}}} I used to mind a boy with verbal dyspraxia and his first SALT was completely crap too. Told his Mum that we just needed to do action ryhymes with him and animal noiseshmm I was unimpressed as both my two were preschoolers at the time and I had this boy for 40 hours a week and we already did this sort of thing every day and it was definitely not helping!

After being fobbed off a second time by this same SALT his mum kicked up a real fuss and was lucky to get the head SALT instead. She sorted out 2 sessions a weeks with her for a few months plus got me, his mum and his preschool trained in sign language to use with him. He came along in leaps and bounds with decent SALT input.

His needs were different to your dd's as he didn't have the hearing issues but at 2 1/2 he said only 2 words - mama and no. Other than that he just screeched. I honestly thought he would never develop normal speech but he has - I saw him last year when he was 7 and his speech is a bit monotone and halting but other than that he's finesmile

dustystar Wed 08-Oct-08 17:18:11

We only used the sign language for about 10 months and then he was able to speak well enough to make himself understood most of the time.

I know its hard but ignore the tossers who give you dirty looks when she's loud. They haven't got a bloody clueangry

Seuss Wed 08-Oct-08 18:31:14

Are they currently doing anything to stop the weeping?

pramspotter Wed 08-Oct-08 18:32:58

Thank you for your responses.

She just had a mastoidectomy. Ear still weeping. They don't know what else to do.

Tclanger Wed 08-Oct-08 18:50:04

Message withdrawn at poster's request.

Tclanger Wed 08-Oct-08 18:50:52

Message withdrawn at poster's request.

mumwhereareyou Wed 08-Oct-08 19:23:22

Sorry about all your problems but was just going to echo what Tclanger said, private SALT might be the way to go.

kt14 Wed 08-Oct-08 20:00:04

nothing useful to add but wanted to express support, it sounds like you're having a tough time of it.

pramspotter Wed 08-Oct-08 20:03:25

I am going to try for a private SALT. There isn't much in our area. I don't cry about it at all usually but today it just hit me that she is nearly 6 and cannot talk.

jimjamshaslefttheyurt Wed 08-Oct-08 20:05:25

They seem allergic to diagnosing verbal apraxia in the UK. I have been suggesting it for ds1 since he was 2. He was finally diagnosed with it (by some Americans!) when he was 7 hmm. He has autism too, but I think it is the apraxia that stops him talking.

IN the end I gave up with the UK. Nancy Kaufman did a workshop in the UK which I went on. It was enough to be able to teach me how to use her Kaufman cards. In fact in ds1's case we decided that speech was an unlikely attainment for him and we moved onto typing. However he has almost no consonants, and of course the autism issue. I think for most children her system would work well.

She used to do a distance thing where you could send her videos and she would provide sort of distance assessment and supervision.

Always found her helpful.

tigermoth Wed 08-Oct-08 20:07:12

I'm so sorry this is happening to you. I don't normally post on special needs theads but couldn't ignore this one.

FWIW my son had bad hearing problems from babyhood to 12/13 years old. Not as bad as your dd's and it didn't affect his speech, but it did affect his concentration and behaviour at school (for the worse). He had grommets in both ears, adenoids and tonisils out at age 11, lots of ear aches and sinus problems. He is now 14 and a half and his hearing is pretty ok. He did grow out of it - hope that offers you a bit of consolation as at the time, I could't imagine how he'd ever hear properly.

jimjamshaslefttheyurt Wed 08-Oct-08 20:07:15

unless you manage to find a really specialised UK SALT I would use this service.

drowninginlaundry Wed 08-Oct-08 20:26:07

It makes me so angry to read stories like yours... poor you and your DD. So the SALT is saying the problem is medical, and the docs are saying it's developmental... that's really helpful hmm

A private SALT diagnosed DS1 with verbal dyspraxia, our NHS SALT refused to even contemplate that this would be the case, despite my being on her case for six months almost weekly. I think if a dyspraxia is diagnosed, it requires very intensive input by a specialist SALT, rather than an half-arsed programme delivered by an untrained LSA, which is why NHS and Education won't diagnose until they are bullied into doing so. We have been doing the Nuffield Dyspraxia Programme at home and it has improved DS1's speech sound production a lot, but he still can't produce most consonants.

hope you find someone who can help her.

jimjamshaslefttheyurt Wed 08-Oct-08 20:31:06

Oh that;s a point. We actually met with the person who developed the Nuffield system. She worked at the Nuffield Speech and Hearing Clinic in London. So that could be an option although it is pricey (we had BUPA at the time who paid). An NHS SALT tried to deliver it by turning up once every 6 months hmm which was hopeless.

I have a bunch of Kuafman apraxia test booklets somewhere here. If you want one let me know. Our private SALT administered the test to ds2 (whose speech development was also weird) quite easily with the instructions. I'vbe just remembered that I used the kaufman cards with ds2 and he quite liked them.

jimjamshaslefttheyurt Wed 08-Oct-08 20:32:47

you may well know the apraxia kids website already. It's American but I found it useful.

geekgirl Wed 08-Oct-08 20:37:43

pramspotter - am in a hurry but I just wanted to say that there is a hearing aid she can wear - it's called a BAHA (Bone Anchored Hearing Aid) - dd2 has one because her middle ears just don't function and her ear canals are too narrow for normal hearing aids. The BAHA is used in cases like your dd's where the canal is chronically weeping or where children have no ears or ear canals.
You can get it on a thin metal alice band (google BAHA headband and you'll see), it works by conducting sound through the skull straight to the inner ear and is brilliant. My dd2 passes hearing tests with flying colours when she wears her BAHA (her's is on an implant now but she used to have the headband and did well with that).
Unfortunately dd2 also has oral dyspraxia (as well as Down's syndrome on top of all that) so her speech is very unclear, but at least I know that her hearing is good now.
You need to push for a BAHA - they're expensive and NHS trusts can be a bit awkward, but ask to try one on a headband. You have nothing to lose.

geekgirl Wed 08-Oct-08 20:42:09

picture of the BAHA headband - we prettified ours with glitter & paint.
The BAHA clips onto the little disc at the side.

mum24boyz Wed 08-Oct-08 20:45:07

was just wondering why pecs or makaton was never tried, round here both ds3 and ds4 had speech problems, and makaton was automatically used, and ds3 still uses some pecs at school to keep his day ordered for him, though he prefers words now lol. i did suspect verbal dyspraxia for ds4, well the whole parcel really, but not too sure now as he does have speech now, though not always audible. anyway i really just wanted to show some support, my ds2 had weepey ears but not all the time, and gromits sorted his ears out, he still doesnt have full hearing at 14 but enough to get by, and i wonder how much of it is selective sometimes. i really hope you get some help, but it sounds to me like you need to start kicking up a fuss now hun, not something i do easily but have been known to when needs must. good luck with it all.

jimjamshaslefttheyurt Wed 08-Oct-08 20:46:29

PECS or Makaton aren't that great for a child whose trying to talk in sentences though, although certainly good for someone like ds1.

pramspotter Wed 08-Oct-08 21:37:50

Thank you so much for your responses.

I tried calling the SALT lady today but she is off. I will kick off about that BAHA hearing aid and see if we can get her one. If she can pass a hearing test but her speech doesn't improve then they might see that I am onto something regarding the apraxia.

I am going to check out the links you all have posted. Going into arse kicking mode now.

vjg13 Thu 09-Oct-08 08:34:42

Pramspotter, children are using the BAHA in our area, Manchester too.

pramspotter Thu 09-Oct-08 08:56:59

I am going to try the video thing and contact Nancy Kauffman. She has no problem with single words (unless they have an S sound). And her vocab is good. But when she tries to speak in sentences it gets all jumbled.

Who thinks that this is a result of her ear probs and who thinks it sounds like apraxia? Could it be both. Doctors and SALT really don't give a damn.

lingle Thu 09-Oct-08 09:50:49

Pramspotter,

Others here have much more expertise than me BUT there is a book that is called "The Late Talker" which is actually almost completely focussed on Apraxia. Hold, on, it mentions a US support group....found it! here it is.....

cherab.org/information/speechlanguage/verbalapraxia.html

I hope so much this will be of use to you.

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