Help - Verbal dyspraxia

[jmg]

New to mumsnet and feeling very low so looking for some of your invaluable help! My DS 3.5 has just been diagnosed with reasonably severe verbal dyspraxia. He has had poor speech development all along and was referred for speech therapy 9 months ago. Initially it was thought that late/poor speech development was due to bad glue ear which he had as a 6 months to 18 month old. Speech therapist has now said that she thinks while it may be in part due to that it is more likely to be dyspraxia. She did say that finding out so young and treating gives good chance of sorting it out but no certainty. Has anyone else got any experience of this and what can we expect his speech development to be like over the next few years?

My son has verbal dyspraxia as well. (well we think he does- no-one has really assessed it properly). Well done for getting in there early though (3 and half is very young to diagnose it). Have you seen the apraxia-kids website? It's great. I'll post a link later if you haven't (sorry rushing off to school in a minute).

Don't really know where to start. Are you having regular speech therapy? This is essential for verbal dyspraxia. We have now given up on the NHS and have recently employed a private SALT. You may have more luck than me as my son is also autistic so I suspect he isn't an efficient use of resources. However a little girl I met who "only" had verbal dyspraxia (very severe) also had been unable to access speech therpay via the NHS and had to go private. IMO (and that of non-NHS therapists and other parents) you really need contact with a SALT once a week for verbal dyspraxia (with some sort of practice daily).

Have you been given any exercises to do at home? Mr Tongue, licking sweets off things, blowing out candles, etc? I can give you a whole pile of those sorts of things later if you haven't been given anything yet. In the UK they mainly use the Nuffield system for verbal dyspraxia- again I can give you more info if you haven't seen it yet. (The Nuffied speech and hearing centre can be a good place to visit if you are in London- although its a miserable building).

Verbal dyspraxia is a long hard slog to correct, but most of the parents I have spoken to found that after about 5 or 6 their children were speaking reasonably clearly.

Does your son have other dyspraxia type problems? Eg with fine motor skills. Actually I'm beginning to wonder whether my younger non-autistic son has verbal dyspraxia as well as he seems to have remarkably similar speech to ds1. So I could be joining you on the slog with him as well

Sorry I will write more later- and can give you lots of links, but have to go and get ready for school. I disagree with one thing that your SALT said- if your son only has verbal dyspraxia I think it is absolutely certain that it will be sorted out to some extent. By which I mean I am sure he will be able to use speech as the main means of communication (and will probably end up sounding pretty normal if not totally normal). Don't worry about her "no certainty" bit- I don't think the professionals realise what sort of effect comments like that can have on parents. Later on I'll give you a link to a page that has a boy wth severe verbal dyspraxia talking at various ages- you can hear there what great improvement he makes. Brings tears to my eyes

My son has verbal dyspraxia as well. (well we think he does- no-one has really assessed it properly). Well done for getting in there early though (3 and half is very young to diagnose it). Have you seen the apraxia-kids website? It's great. I'll post a link later if you haven't (sorry rushing off to school in a minute).

Don't really know where to start. Are you having regular speech therapy? This is essential for verbal dyspraxia. We have now given up on the NHS and have recently employed a private SALT. You may have more luck than me as my son is also autistic so I suspect he isn't an efficient use of resources. However a little girl I met who "only" had verbal dyspraxia (very severe) also had been unable to access speech therpay via the NHS and had to go private. IMO (and that of non-NHS therapists and other parents) you really need contact with a SALT once a week for verbal dyspraxia (with some sort of practice daily).

Have you been given any exercises to do at home? Mr Tongue, licking sweets off things, blowing out candles, etc? I can give you a whole pile of those sorts of things later if you haven't been given anything yet. In the UK they mainly use the Nuffield system for verbal dyspraxia- again I can give you more info if you haven't seen it yet. (The Nuffied speech and hearing centre can be a good place to visit if you are in London- although its a miserable building).

Verbal dyspraxia is a long hard slog to correct, but most of the parents I have spoken to found that after about 5 or 6 their children were speaking reasonably clearly.

Does your son have other dyspraxia type problems? Eg with fine motor skills. Actually I'm beginning to wonder whether my younger non-autistic son has verbal dyspraxia as well as he seems to have remarkably similar speech to ds1. So I could be joining you on the slog with him as well

Sorry I will write more later- and can give you lots of links, but have to go and get ready for school. I disagree with one thing that your SALT said- if your son only has verbal dyspraxia I think it is absolutely certain that it will be sorted out to some extent. By which I mean I am sure he will be able to use speech as the main means of communication (and will probably end up sounding pretty normal if not totally normal). Don't worry about her "no certainty" bit- I don't think the professionals realise what sort of effect comments like that can have on parents. Later on I'll give you a link to a page that has a boy wth severe verbal dyspraxia talking at various ages- you can hear there what great improvement he makes. Brings tears to my eyes

BTW- previous mumsnet verbal dyspraxia thread here:

www.mumsnet.com/Talk?topicid=8&threadid=7503&stamp=030424143021#151359

will post other links later

Thank you Jimjams - I'm at work now so not much chance to write at the moment - I will look at the links and the previous threads later and write some more then.

He is seeing a SALT once a week - his NHS assessment appointment has only just come through (9 months after the referral)!! According to the SALT he sees he would then have to wait after the aassessment to get regular therapy and it is likely it would be limited to 6 sessions! I ask you what chance to the kids have whose parents can't afford to go privately!! Our SALT thinks its still worth getting the NHS sessions though, as she says 6 weeks of having 2 sessions per week will make a big difference. Now wondering whether just to swallow the cost and go to her twice a week anyway.

Thanks again - must go in case the boss catches me

oh for f sake. If he has "reasonably severe" dyspraxia then 6 weeks is not enough!!! Bloody ridiculous. And I had exactly this rant at a paediatrician on Tuesday. What do people do who can't afford private SALT?

To find a private therapist look here:

www.asltip.co.uk/main.asp

The page says somewhere expectto pay around 55 pounds a session. That is how much we paid in London, but now we're in the sticks we're "only" paying 35 pounds a session.

Definitely stick with the NHS as well=- as you are then in the system. Your son may need to be given daily SALT at school/nursery from an LSA (my son gets this) and you will need the NHS therapists to sort this out. You can try to statement and get the number of hours therapy written into the statement (where it becomes legally binding for the LEA to ay for it if the NHS cannot provide it). IME though this would involve going to tribunal and we decided to put that money towards a private therapist instead. Depressing isn't it?

Anyway more cheerful stuff. Here's apraxia kids: www.apraxia-kids.org/

cherab's worth looking at as well:

www.apraxia.cc/

They sell proEFA fish oils which some people have found very helpful. I've ordered them from here twice in the past- they come through very quickly and are the same sort of price as buying efalex from boots. I've also bought the kaufman cards- they're more interesting than the Nuffield piccies (and a slightly different system). I've emailed Nancy Kaufman for advice before and had a helpful reply from her.

whilst looking for the website with children talking I came across this: apraxia_radioshow.tripod.com/apraxia_radioshow/ ahven't listened to it yet myself but could be interesting. Have to dash now, but I will try and find the link with the child talking later today.

what are kaufman cards?

Have a look here:

www.kidspeech.com/ksp_kit.html

they're a bit beyond ds1 at the moment. But maybe when we've worked more on copying.......

Thanks Jimjams

We already have a private SALT - I went down that route 9 months ago when I found out how useless the NHS route would be!

It has taken her so long to reach her assessment because he is so young and they don't like to jump to conclusions too early. She is talking to the NHS on our behalf trying to get the best deal for him that she can. We are in London and it costs us £60 per session DH is going to try and get it covered through BUPA so we might be able to claw some back!

Looking at it positively at least now we have a diagnosis. I can therefore get busy looking at all the sites and resources you have recommended! Thank you so much for your help - it does make me feel I'm not alone in trying to deal with this!

jimjams thanks for that link Can you buy these kaufman cards then? Do you have them and are they useful? I could do with some different flashcards for my dd. She has moved on from the single word ones and could do with some 'doing' cards IYKWIM. Such as who is eating, jumping etc. Do you know of any? The portage worker used to bring dome round from the DSA but I havent been able to get any of them either. Would be very grateful of your help if you know

Oh no I don't think kaufman are good for that. You need color cards (pocket ones are good and cheap) Either from LDA or winslow. I'll trt and dig out catalogues later.

The LDA chatterbox kit is expensive but has LOADS of cards.

Thanks jimjams I will need loads of cards anyway. She is much better with pictures than objects. Objects are too much of a distraction iykwim

jimjams - did you manage to dig them numbers out?

jimjams, I wonder how early can you diagnose a child with autism? A friends as autism running in her family and is now worrying that her ds could have it too, however she said that the first signs are normally evident by 15-16 months old and not before.

Sorry if I ask you, but you seem well informed, congratulation for the great work you're doing with your children

My son was diagnosed at 2 after a LONG wait to see the paediatrician (would have been 9 mos but was 6 mos due to cancellation I badgered for). IMHO he showed clear signs of autism VERY early on and anyone who knew anything about child development could have had a good guess as early as 6 months. I also have other ASD people in my family, a sister who has Aspergers and a cousin whose son has very similar autism to my son. They are the only boys in that generation as my sisters, his brother and our other cousins all have girls.

Davros, what where the signs that you think could have been spotted at 6 months?

I've thought for a long time that ASD or something very like it could have been considered very young and now I have a 7 mos baby I KNOW he showed clear signs by her age. These are some of the signs:
Cried and cried for the first 3 mos to what I now know was beyond the usual and hardly slept, could not be comforted. Then switched to being very secure with routine
NO eye contact
NO interaction
DId not reach for things
Looked at things in a funny way out of the side of his eyes, often went cross eyed (HV told me all babies did this, now I know otherwise)
Did not follow things with his eyes
No attachment to parents or separation anxiety
No interest in toys or other objects

By 1 year old he had all of the above and
NO babbling (my 7 mos baby has done this for some time)
Repetitive behaviour, e.g. opening and closing doors
No attempt to feed himslef (7 mos baby tries this)
WHen he was 11 mos old I went into hospital for 6 days and he couldn't care less about me when I came home, but worse than that, I wasn't at all surprised.

I'm sure there's lots more if I spent longer thinking about it

Hmmm- my ds1 wasn't really like that But then he is perhaps more unusual (having spoken to friends- I think Davros' description is more usual). He was a very passive relaxed happy smily baby. However he regressed at around a year months and you can see quite clearly on videos that eye contact etc diminished after that time. There were signs of hypersensitivities (which often go with autism) at a very young age. For example he loved lights and would like to look at ceilings (for ages). A friend with a similar ds1 said she knew that her ds3 has problems becuase he used to look at leaves - and I knew what she meant. her ds3 has PDD-NOS (like a mild autism).

I was failry confident about ds2 when at 4 months he clearly copied me. He may have been younger. I knoew by around 15 months that he definitely wasn't autistic (he passed the chat test then- I tested him). I was pretty confident from a year and one week of age when he did his first point.

If you gave me an unknown child at 18 months I reckon I could tell you whether or not he/she was ASD. Younger than that it is hard to say but I could recognise children with potential problems.

Fio2- will dig out numbers tomorrow- sorry forgot......

Actually all my anteneatl friends used to say "oh A is so relaxed he is the most relaxed baby in the group, look how laid back he is". makes me laugh out loud now as he;s being very particular about something. Mind you for an auti he's still pretty laid back.

Just wanted to say thanks jimjams. I have just received my LDA catalogue (which looks great) and have ordered some colour cards from winslow off the internet. They are just what I was looking for. So thanks for pointing me in the right direction Um why dont SALT's tell you about such resources?