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Here some suggested organisations that offer expert advice on SN.

verbal and oral dyspraxia/aparaxia support group

(26 Posts)
Phoenix4725 Fri 28-Aug-09 12:56:12

ok im either mad or stupid or both according to older Ds`s

Am thinking and looking into ways to set up uk based web support group for people with children affected by verbal and oral dyspraxia .This has come about as I have found nothing available in the uk ,have had lots of usefull advice here and another language group that I belong to that sprung from here.

But some days find myself feeling very alone with issues realting to Ds communcation problms so thought might be usfull for somewhere that people can talk and share information .

Feel free to tell me I am nuts

sodit Fri 28-Aug-09 14:16:08

well i think it is a brillant idea. Ds1 is starting to try to talk now but its hard to work out how to help him. I dont know if he has dyspraxia but he has only got a few sounds mostly a g m. But i am sure any advice will be greatly appreciated by many. Also just somewhere where you can rant about not being able to understand your child, it quite often brings a tear to my eye when he is trying to talk and i havent got a clue what he is saying.
GO FOR IT!!!!!!!! grin

beautifulgirls Sat 29-Aug-09 15:17:11

Go for it - I would certainly be interested in joining. You are not nuts grin

bubble2bubble Sun 30-Aug-09 11:29:16

Not nuts at all. I think a lot of people feel very isolated with child with S & L difficulties
There is the Afasic forum, but noone ever seems to use it

Phoenix4725 Sun 30-Aug-09 13:01:47

yes itsnot really used and when spoke to afasic found al they could do was mail me out stuff that I already had .There seems be very little help available for those at the sever end even salt we seen admitted most may see only 1 or 2 in the working times that is severe

crispapple Sun 30-Aug-09 20:13:26

Agree not nuts at all! We are also at the severe end (even Nuffield say really severe/complex - local authority have never had a child like him and don't know what to do...) - would be great to have somewhere to share ideas, info on appropriate input at school age and possibly just rant occasionally! DOn't come on here all the time but will keep an eye out for if you post any more - great idea.

Phoenix4725 Sun 30-Aug-09 20:25:39

same situation crispapple, nuffield have turned us down for assesment as ds is just to severe ad we been following their program for 18 months and no progress , everyone seemed to hve just shrugged shoulders with a oh well .

how old is your ds?.Lea here are struggling

crispapple Sun 30-Aug-09 20:41:32

I remember you saying that about Nuffield for your DS - that is difficult. My DS is only just 5 but as we don't live in England we haven't had to contend with school full time just yet. No idea where he will go - LEA pushing for mainstream (as they have nowhere else really) - Nuffield looked shocked at this! We didn't see progress for a long time - nothing at all (despite lots of effort), then only single sounds for ages (which is prob when we first saw Nuffield just over a year ago) but now a few words together which is great but as you know it's a hard slog when you see little progress. Has your DS started school? If so how is he getting on?

Phoenix4725 Sun 30-Aug-09 20:49:07

Ds starts school f/t on Thursday was 4 in July so very young.We had to go Ms the sn school wasjust not right and admitted they did not know where to put him they thought about the ASd base within sn but we all agreed not right for ds whos very passive .

Language unit wont take him as he hasGDD.

Am looking very carefully at language units around country am seriously considering move am wondering if could fight gte ds place in ican school .When it goes tits up in ms and it will

Not helped as nhs salt was seing put in one vist term be plenty and twic weekly of a program .I been doing every day but come 3,30 he is just going to be to shattered .

Were still not getting any proper sounds sad

Phoenix4725 Sun 30-Aug-09 20:50:17

if you ever wnt to chat of mn my email is phoenixlightfoot@yahoo.co.uk.

crispapple Sun 30-Aug-09 21:22:03

Thanks for that Phoenix - I totally understand your concerns about school - luckily we have another year before we are in your shoes. My DS also has a GDD diagnosis (from a while back) but his receptive language seems almost age appropriate. Not toilet trained either. Agree with you that your DS will be shattered and so the sounds work has to happen during the school day - will the classroom assistant/1:1 (if there is one) integrate some of the SALT work into day to day activities? Hope it isn't too traumatic for both of you. I'm not on here much but I will keep an eye out to see how you got on. Good Luck.

Phoenix4725 Mon 31-Aug-09 06:40:58

Yes he has 1-1 f/t but she is totaly inexperianced , school are having makton training Tuesday but shes not done pecs or anythig and never worked with student with Ld o language problmes .Can see me spending most of term in class room

Ds is dry in day though still will poo in his pants am working on that one

misscutandstick Mon 31-Aug-09 08:47:00

Phoenix! only just found this thread. smile

Was wondering how everything was going. SOrry to hear its not too well at all.

DS5 still just makes the same 2 or 3 noises: gah, gug, and a strange 'thd' noise (its kinda a hard 'D' noise made with tongue between his front top and bottom teeth), but thats an improvement - using his tongue to make a noise.

He doesnt lick his lips or purse them.

His sign language has stagnated, but it seems a bit pointless to try and teach him words that he doesnt understand. His mental ability is around 12-18mths (hes chronologically 3.3y), and his language reflects his mental age - so teaching (for eg) opposites, would seem silly as he simply wouldnt understand the concepts. But he does use the language he has spontaneously and in context, so thats good.

We are lucky that all teachers and TA's have been makaton trained, and recent catchup courses taken too.

I think i feel more laid back about DS5's language issues as: DS5 is tiny, hes still in nappies f/t, hes mentally 12/18mth, so for all intents and purposes he may well BE 12/18mth as he looks and acts it. I think perhaps if he hasnt progressed in a year then I too would be more worried, as he would be heading towards f/t school.

When school re-opens, DH and I have decided to get in touch with the local SN school and discuss DS5. the concideration is that MS is right across the road, and SN is a 15min drive away. But he needs intensive 1:1 to learn new stuff.

Phoenix4725 Mon 31-Aug-09 09:33:31

they tll puttin the speech t asd or GDD have they looke dinto verbal or oral dyspraxia yet.

ds is around 2.7 and is 4.1 now gone so fast , but our 2 do seem to be following each other

sickofsocalledexperts Mon 31-Aug-09 13:44:00

What a fantastic idea! I have googled verbal dyspraxia till I am blue in the face but the truth is that we are way behind the US and badly need some kind of forum, to which perhaps some experts will also gravitate so we can get some decent advice!

Phoenix4725 Mon 31-Aug-09 15:53:27

am working on how best to set it up lol knew should apyed better attention to It.

Same here sickofsocalled experts there is nothing even afasic al could offer was to send me couple of sheets of paper that already had

misscutandstick Mon 31-Aug-09 19:18:23

sorry phoenix, blush meant to say, yes! I think its a fantastic idea - I'd certainly be on board too!

Actually its thanks to you that i know not only is there a difference between "verbal" and "oral" dypraxia, but what the difference is too.

DTK Sat 19-Sep-09 22:32:26

Hi
I have also been trying to find a support group as my 4 year old has verbal dyspraxia and the days can be long and hard! I often feel that people don't really get how hard it can be.

Setting up a web support group sounds like a lot of work but very needed! I'm lining up to join!

sickofsocalledexperts Sun 20-Sep-09 10:09:46

Even a web board where we could all share tips on how to bring out the clarity of speech, or sounds? I would love to just read a list of tips on what people are doing as I'm sure us inventive mums between us could come up with more than many of the experts I'm so sick of!

moondog Sun 20-Sep-09 10:15:23

Good idea ladies.
Verbal dyspraxia is an absolute bugger to address, particularly (as is so often the case) when presenting with another issue such as GDD, LD, SN, ASD or whatever.
Phoenix, one of the biggest issues in filed of SN is totally inexperienced 1:1 support workers who don't even follow a recognised training path.

It's insane to put these people n charge of kids with complex learning problems, truly the biggest issue in SN edication at present. Yet so many people fail to see that 1:1 IS AT BEST USELESS AND AT WORST POSITIVELY DAMAGING when people haven't a clue.

My most important bit of advice to anyone seeking a statemnt for 1:1 support is to specify and quantify a training programme for the 1:1.

positiveattitudeonly Sun 20-Sep-09 10:24:43

I think it would be a lifesaver for mums to have this support from others who have the same issues.

My DD was diagnosed as having verbal and oral dyspraxia at the age of 3. She is now 15 and has more of a problem with verbal diarrhoea hmm shock. However I remember very well the awful times before she spoke and only made vowel sounds (until she was 7). I was called into the pre-school once to find out what was wrong with her as she was upset. I went and did not have a clue!! I was made to feel so bad by the teachers who could not unerstand the fact that even I could not understand her. They made me feel as if I was a terrible mum!
Just want to encourage you though, that DD has done well and although we notice small "mistakes" and word confusion, DD can now laugh any embarrassing times off and none of her friends seem to be aware that she has a problem. She can certainly move her lips enough now to kiss, and not the wet slobber that I always had from her as a youngster. No complaints from her boyfriend, anyway!!! hmm

A support group would be brilliant for others, I'm just sorry it is too late for me, but I would be very willing to let anyone know there is light at the end of the tunnel!!!!

moondog Sun 20-Sep-09 11:04:56

I am all for peopel helping themselves and each other and not relying on the so called 'experts' (who often don't know much anyway) but must warn against thinking that it is as simple as training a mouth to make sounds. Many children with dyspraxia have global language difficutlies (particularly difficulty with expressive and receptive language) too.

Often a decision has to be made to work on what is of higest priority.Ihave worked with children woh are severely duspraxic but we have prioritised expressive and receptive language as clinical decision has been made that we con work on these more effectively than we can the dyspraxia.

sickofsocalledexperts Sun 20-Sep-09 12:21:56

Moondog, is it true (as I think I read somewhere online) that for verbal dyspraxia it's positively UNHELPFUL to do echoic practice on individual sounds. I read that you should work on natural receptive/expressive speech, rather than just the producing of sounds? I can't remember what reason they gave though. I got a bit worried as our ABA for the past 3 years has been centred round getting him to learn to say sounds, then words, and now phrases? Should we in fact just be working on speech?

moondog Sun 20-Sep-09 12:33:14

Impossible to generalise Sick and every child is different. No denying it is useful to work on sounds in isolation, building up to words and phrases.It's what SALTs do.

Re this comment
'Should we in fact just be working on speech?'

I'm not sure what you mean. I think you ARE referring to using and understaing language in conversational type of way.

SALTs use the terms SPEECH and LANGUAGE in a precise way.

I can't give you a definitive answer. ABA isn't perfect, neither is SALT.Add to that that with a lot of wrok with peopel with SN, we are feeling our way in the dark.

I am a bit hmm about some of the ways in which ABA folk work on speech sounds by rote thoguh. I know they don't understand the complex building blocks that comprise communication like SALTs do.

Which is why ABA needs SALT and SALT needs ABA as I keep on saying!!

sickofsocalledexperts Sun 20-Sep-09 12:41:53

That is useful, thanks Moondog. Wish you could come and work with my son, or find me down here in London a SALT who also knows ABA techniques!! I do agree with you that it needs a combo of both, as ABA don't quite understand the building blocks of language, but SALTs often just can't get results out of my boy as don't understand reinforcement/motivation etc of ABA.

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