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Apraxia /verbal dyspraxia

(13 Posts)
Phoenix4725 Thu 18-Jun-09 16:58:40

Just wondering if anyone has dx of this as ds now does and if anything were now getting less Salt as it can`t be quick fixed and am wonderng if its time to ask for referal to somewhere more specalised so am fishing for ideas

thank you

sickofsocalledexperts Thu 18-Jun-09 18:46:27

I don't have a formal diagnosis but am pretty sure from what I've read etc that DS has Verbal Dyspraxia as well as autism. They are way better at this stuff in the US than here, where I don't reckon SALTs actually understand it much (hence them telling you it can't be fixed - what they mean is, they can't fix it!). We are using painstakingly slow echoic training with our ABA tutors - what I mean is that we are practising each and every sound with him in front of someone, so he learns to copy the tongue movements. He has only just learned to say "th" and "l" properly, after years of practice. Once he has a sound mastered, we practise a word, then we get him to use the word in the right context, then we start to practise 2/3/4 word phrases of mastered words. It is slow slow slow, but he is learning to talk and I won't give up. His best, and clearest phrase (not surprising for an autistic kid) is "I want go to home" which he says beautifully clearly. We use a form of ABA called VB - if you get a book called the VB-Mapp online, you could do it yourself with DS?

Phoenix4725 Thu 18-Jun-09 18:59:55

yeah i lookd at that but with ds its not case of him not wanting to do it he really wants to communicate but no matter how hard he trys he just cant make the sounds any of themsad .Behaviour wise he is pretty good long as yo seem him for the 2 year old where hisdevlopment level is ratherthan the 4

Yes been web hunting and been us sites I found so far but wish could find something closer to home its annoying that there seems so little knowledge understanding of it in the uk

sickofsocalledexperts Thu 18-Jun-09 19:03:11

they have checked his tongue and everything right?

Phoenix4725 Thu 18-Jun-09 19:08:27

thry checked hes not tounge tied he can stick tounge out but not in sny other direction hes never been able blow raspberries/bubbles /babbleall the normal baby things

sickofsocalledexperts Thu 18-Jun-09 19:39:05

I looked at one stage to see if there was any SALT in the UK who REALLY knew about verbal dyspraxia, but apart from our lovely Moondog on here, I think many of them say they know about it but don't. Why not see if you can establish email contact with someone in the US who knows about it? You have probably tried all this already, but just thinking aloud till someone comes along who knows more. My son did not blow bubbles or raspberries, but he did babble, though mainly "eeeeeeee" at that age.

Phoenix4725 Thu 18-Jun-09 19:41:42

yeah chatted to a few in the us and there all shocked about how little therapy get here.Yes seems be same problem im having and ones i find know about the milder end of it

Ds is nearly 4 now and feel that evrything moving so slow

slightlycrumpled Thu 18-Jun-09 20:11:33

Hi phoenix, DS2 was/is very similar with regard to being unable to form sounds to make up the words. He was diagnosed last year with having a sub mucus cleft palate, which is basically a cleft but with skin convering the hole disguising it.

DS2 was unable to blow at all, he couldn't blow bubbles or play a recorder etc. It may be worth enquiring about this. If he was drinking through a straw and had a cold all of the drink would come down his nose! <grim emoticon>

The lack of SALT is soooo frustrating for you. So annoying, I could really get my knickers in a twist about it!

Phoenix4725 Thu 18-Jun-09 20:15:22

will ask about this next time we go would it need be ENt ask to see?

Have wrote letters to everyone can think of lol think they cringe when anothe rone land son desk but it just seems there is none with the expertise at the level he needs

slightlycrumpled Thu 18-Jun-09 21:06:41

Yes ENT in the first instance and if they think there is anything in it they will refer on to cleft clinic. Can only be diagnosed via x-ray or nasendoscapy (tube up the nose), I know it's a long shot but I was shock when we found out about J's.

crispapple Thu 18-Jun-09 21:43:46

My DS is also 4 and we have a diagnosis of verbal dyspraxia - both oral and developmental (and general dyspraxia too as an added bonus). We pushed for a referral to the nuffield hearing and speech centre in London. (GP and SALT letter/report required). Basically they asessed him (paediatrician and specialised SALT) and then we go back every 6-12 months. We follow the nuffield dyspraxia programme with our SALT (who we are lucky to see most weeks)and whilst progress is painfully slow we are adding to his vowels and consonants bit by bit and have seen his confidence grow as a result. His receptive language is pretty good but expressive still very poor but I now think he will have some level of speech. THe important thing seems to be daily practice at home to constantly drill - though there are some sounds ('s', 'ch', 'y' etc) he is miles away from being able to produce but now at least he has quite a few words and can join some together (that happened just 6 months ago).

Hassled Thu 18-Jun-09 21:49:48

DS3 was diagnosed with verbal dyspraxia at 4 - started speech therapy at 3. Now he's 7 - at mainstream school with a statement giving 1-1 support. No other concerns - he's bright as a button and has always had lots to say; his only problem was that no one could understand him.

At 7, he's usually intelligible - to both adults and children. His speech isn't "Normal", but unless he's tired or stressed, you can usually understand him. But he's had a hell of a lot of SALT input, we've practiced at home a lot, I correct him often - it's been a long hard slog, but he's a happy, confident boy. SO there is a lot of light at the end of the tunnel .

Phoenix4725 Fri 19-Jun-09 06:28:49

I dont doubt the dx infat i wonder why its taken them so long to give it he started hving speech therapy at 2 1/2 after I kicked up a big fuss

But does seem extra salt input is the key andthere just is not any available,I do work with him every day

Can either of your ds blow bubbles raspberries and did they ever babby babble?

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