verbal dyspraxia

[Jimjams]

Does anyone have a child with verbal dyspraxia? If so did you get enough/any SALT?
Did you use the Nuffield system? Was there any method you used to encourage your child to say the sound?
Alternatively did you use Kaufman cards?
Did they work?
Did your LEA provide you with any SALT and who delivered it?

Sorry too many questions. I'm just trying to decide on the best way forward.

Jimjams would the dyspraxia foundation be able to help you?

Hi Jimjams- I've met several families with children with verbal dyspraxia recently. I'm afraid things are for all of them fairly grim on the SALT front, if by this you mean actual, sustained, one-to-one input from a qualified SALT. Free provision seems to range from inadequate to none in the area where I work. They just can't recruit and retain enough SALTs it seems. Sometimes good work is done by keen staff in nurserys/schools following well designed programmes by a SALT though, and that might be one thing to think about, especially since it sounds like your son's nursery and potential school are anxious to do well by him. I don't know if any of the families I work with are using the Nuffield system or Kaufman cards but I'll certainly ask next time I see any of them.

A member of my family has just started to train as a SALT. She was expected to get two As at A level and one B before she could start the course. If that is the level expected, I'm not surprised that there are too few SALTs around

Just to add another note of gloom on the SALT front. We waited 9mths for an assesement appt. They said yes there is a problem but there is a 2yr waiting list. (DS was 5 then). Got called back for another assesement 1yr later and strangely the problem was still there (odd that )told the waiting list was still 2 yrs. So then went privately, liased with school and had lessons at school, in break/rest time). that worked really well. Now just has lisp and cannot say Sh but can do other sounds. We have stopped SALT lessons and swopped to Private drama lessons for lamda exams- which he loves and help in a more subtle way. (never actually enjoyed speech therapy lessons). So there is hope but dont expect too much from LEA/Health authority!

We have finally got a SALT- after a 2 year wait. She is very nice, but very new and very inexperienced. DS1's problems are so "complex" (as the pros like to call him) I think she may be a bit out of her depth- and we only see her every 6 weeks or so. We're drawing up the statement and I'm trying to think how to approach it. I'll ensure SALT is in part 3, but who gives it? If it's a TA or something they're going to be well and truly out of their depth.

Think I'm going to have to carry on doing it myself but I feel out of my depth when it comes to verbal dyspraxia- especially with the severity he has.

The dyspraxia foundation are more use for fine/gross motor dyspraxia. There is a very good organisation in the States called cherab- but they say things like "5 sessions of SALT are needed per week and without this it won't get better" so I just get depressed reading it - lol. That's obviously not going to happen.

We have the Nuffield cards (well some of them) and although DS1 quickly learns to match the sound (ie he knows which card is ba, which K etc)- he doesn't remotely attempt to say any of them- he can't and I'm feeling stuck.

The SALT also said to encourage him to blow bubbles but he can't do that either- I've been trying to teach him that for years! How do you "teach" a child that? When I was teaching him to use a spoon I stood behind him, put my hand over his and taught him the action that way- I had to do that for about a week before he could manage it. So how on earth do I go about teaching him to try the speech sounds? Do I just hope he becomes more aware of the sounds as he hears them? He's been able to distinguish between m,n, f, s, etc since he was 2 (will point to correct letter) but he can't remotely say any of the sounds. USsites also talk about mouth stabilisers or something- obviously that's getting too technical for me!

hmb- it's probably like physio and optometry- that's the normal entry requirments for those. they're training so few the courses are highly competitve- hence the A level requirements are ridiculous. And then of course the NHS pay is so bad they leave and become private SALTs paid 50 quid an hour - and who can blame them.

Dont know how old your DS is but we did come across a voice recognition software product that showed you graphically what the sounds looked like so that you could change them to try and match the "picture"on the screen. We never bought it but will ask DH tonight, if he can remember name/price.

Hi Jimjams, if I were you I wouldn't hesitate to contact anyone you can find in the UK who is doing research on verbal dyspraxia. Just email them (using your qualifications ) and explain the problem and ask if they can give you any advice about teaching your ds speech sounds. I know it's not any kind of answer compared with having an experienced SALT seeing you on a regular basis, but I bet you'd get some help. Worth a try maybe? Just search on Pubmed and add "uk" to the search terms.

miggy- he'll be 4 next month. I would be interested in that software when he's older. At the moment the sound is so remotely unlike the one he's attempting to say that I think the rogram would malfunction

Tamum- there is someone in the States working on a subtype of autism where the children have very pronounced verbal dyspraxia. She has a son who fits the description. I did exchange a couple of emails with her, and she had some good advice. Unfortunately her main advice was to fight for as much SALT as possible (by which she meant try to get it 5 times a week rather than 3). Obviously that is very removed from what is available here. I think I will email her again though and ask whether they've used Kaufman cards.

I don't think there's that much going on over here but I could be wrong. Most of the people I've made contact with over here have been involved in the biomedical side of autism. i'll have a look on Pubmed - I haven't really investigated the dyspraxia side of things properly yet.

Jimjams, could you find the nearest university that trains SALTs and approach them? Not that you would want your ds to be a test subject, but you could get linked up to some young, up-to-date and enthusiastic students. They might be more open to new ideas, and prepared to push to the limit to help your ds. Or have a look and see who is publishing in the area (Medline?.....If I can help let me know, as chasing information in data bases used to be my job)

I thought about doing that when we were planning to home ed ds1 hmb. I thought it would be great for general SALT. The trouble is I'm back to the experience thing. Verbal dyspraxia doesn't respond to normal SALT, it has to be a particular type. His community SALT is very good in those sorts of terms. She's very enthusiastic. She's pointed us in the right direction in theory iyswim- but doesn't seem to have any ideas on how to make it work in practice. I'm fairly confident I know what I'm doing when it comes to the normal language building stuff, I'm just at a loss on the verbal dyspraxia.

Thanks for the offer of help hmb. I'll remember that- I might start hassling you

Jimjams, it must be frustrating for you to see that your son would be getting speech and language therapy five times a week if he was in the States. However, indirect therapy can be very effective too, as long as the person carrying out the programme is aware of exactly what they should be doing and why they should be doing it.

As ScummyMummy said, it sounds like your son's nursery are keen to do well by him. Would one of the staff be able to attend the next SALT session with you, or could the SALT come to the nursery? Even if you normally attend a clinic I would think that this should be possible - at least for a one off. Could you video part of the next session so thtat staff have a reminder of exactly what they should be doing? Problems with indirect therapy tend to occur when the SALT explains to x, x explains to y, y explains to z etc and essential information becomes diluted.

Seeing a SALT every six weeks is clearly inadequate and I realise that my suggestions are not the level of SALT that you aspire to, but it should still be beneficial for your son and the responsibility for daily practice would not be solely on you. What is essential though is that as your son makes progress the SALT is able to review the programme and make appropriate changes. If changes do need to be made between appointments could you contact your SALT by phone. I am sure that she would be willing to revise the programme this way.

When the statement is written would it be possible to include your son's 1:1 support attending therapy sessions (and not just SALT?). I remember the statementing process being very political and having to write things like "as jimjams son has no functional speech he would not be able to contribute to classroom discussions" in order to have SALT included under section 3. I'm sure you've already included the fact that the school should have the PECS software available to them.

Have you contacted AFASIC for advice on the best way forward? Their website is www.afasic.org.uk and they have a telephone helpline 0845 3555577.

Have to admit that I've never heard of the Kaufman cards. The Nuffield system was the only one we were taught about when I trained. The Nuffield programme does contain ideas for helping children to know how to position their lips and tongue for the sound they are aiming to produce. As you said your son is a "complex" case in professional terms so I don't know how appropriate they would be for him. Some involve mirror work, which I guess would not be appropriate as it involves copying, but others are more sensory/invasive eg. holding his nose as he says "m" to elicit a "b".

Remember as well that you are also encouraging his speech to develop through your work with PECS as the intial programme found that of the 66 children who used PECS for more than a year 44 then developed independent speech and another 14 used speech augmented by the PECs system, even though traditional therapy methods had not been successful.

The fact that your son can differentiate between sounds is very positive and it sounds like you're doing a great job of supporting his speech and language development. I hope that you manage to get some more support for him soon. hmb's idea of using a student could be very beneficial. If you can find a 4th year or Msc student interested in doing their dissertation on dyspraxia they will have access to the latest research and support from an experienced clinician.

Haven't got time to preview this so hope it all makes sense.

CER

Jimjams, it must be frustrating for you to see that your son would be getting speech and language therapy five times a week if he was in the States. However, indirect therapy can be very effective too, as long as the person carrying out the programme is aware of exactly what they should be doing and why they should be doing it.

As ScummyMummy said, it sounds like your son's nursery are keen to do well by him. Would one of the staff be able to attend the next SALT session with you, or could the SALT come to the nursery? Even if you normally attend a clinic I would think that this should be possible - at least for a one off. Could you video part of the next session so thtat staff have a reminder of exactly what they should be doing? Problems with indirect therapy tend to occur when the SALT explains to x, x explains to y, y explains to z etc and essential information becomes diluted.

Seeing a SALT every six weeks is clearly inadequate and I realise that my suggestions are not the level of SALT that you aspire to, but it should still be beneficial for your son and the responsibility for daily practice would not be solely on you. What is essential though is that as your son makes progress the SALT is able to review the programme and make appropriate changes. If changes do need to be made between appointments could you contact your SALT by phone. I am sure that she would be willing to revise the programme this way.

When the statement is written would it be possible to include your son's 1:1 support attending therapy sessions (and not just SALT?). I remember the statementing process being very political and having to write things like "as jimjams son has no functional speech he would not be able to contribute to classroom discussions" in order to have SALT included under section 3. I'm sure you've already included the fact that the school should have the PECS software available to them.

Have you contacted AFASIC for advice on the best way forward? Their website is www.afasic.org.uk and they have a telephone helpline 0845 3555577.

Have to admit that I've never heard of the Kaufman cards. The Nuffield system was the only one we were taught about when I trained. The Nuffield programme does contain ideas for helping children to know how to position their lips and tongue for the sound they are aiming to produce. As you said your son is a "complex" case in professional terms so I don't know how appropriate they would be for him. Some involve mirror work, which I guess would not be appropriate as it involves copying, but others are more sensory/invasive eg. holding his nose as he says "m" to elicit a "b".

Remember as well that you are also encouraging his speech to develop through your work with PECS as the intial programme found that of the 66 children who used PECS for more than a year 44 then developed independent speech and another 14 used speech augmented by the PECs system, even though traditional therapy methods had not been successful.

The fact that your son can differentiate between sounds is very positive and it sounds like you're doing a great job of supporting his speech and language development. I hope that you manage to get some more support for him soon. hmb's idea of using a student could be very beneficial. If you can find a 4th year or Msc student interested in doing their dissertation on dyspraxia they will have access to the latest research and support from an experienced clinician.

Haven't got time to preview this so hope it all makes sense.

CER

Thanks CER. Lots of ideas- and it hadn't even occurred to me to insist the school has a copy of PECS software- talk about forgetting the obvious so thanks for that!

The SALT always come to the nursery. Initially she just left a bunch of Nuffield cards but we had no idea what to do with them, so we videoed a session in nursery with her. Unfortunatley I have noticed that his portage worker (who was also in the session) is using different sounds to me.... Hmmmm I'm sure that must be confusing. When I did them tonight I cheked he could match the sound with the card- he could- but he won't try and make the sound- he just says the picture name so he he just kept saying "ahhee an" (bunny rabbit), or "baum" (drum). Kaufman cards are American. The take a slightly different approach to Nuffield. The child is shown a picture and they get taught to make an approximation of the word. SO right from the beginning a whole word is said- initally it isn't like the real word (so people might be Pee-po- or maybe something simpler to begin with) but gradually the word approximation is moved to be closer to the real word. I have emailed the person who developed it tonight _ a Nancy Kaufman to ask a few questions about the system. It's designed for arents to be able to use at home- so you purchase a kit.

PECS is great for building up his language. DS1 responds well to visual cues. So after a few days of seeing a pecs card for "I want toilet" he now says "uh an mmdan" rather than just mmdan. It doesn't really help the verbal dyspraxia though. iykwim. Mind you today he ran in and said "un a oo- ah um mmdan" (done a poo I want toilet) spontaneously which must be his longest sentence ever. I noticed he's beeng trying to copy phrases and words a lot recently- today he was said daddy's office "ahee uh ho" (which is strange as he'll say daddy perfectly on its own) and looking quite pleased with himself. I thought he miight repsond quite well to kaufman cards to supplement Nuffied (which he's doing his best to ignore). I don't think the 2 systems would confuse him as he copes with letter (ie just sounds) and pictures of objects iyswim.

A local AFAISIC support group has just started up down here. I'm trying to go as often as possible- they have interesting speakers, but it keeps clashing with other things.

Good idea about the Msc student. Perhaps I should ring up and see whether they want to use him for a final year project He'd be an interesting case! lol.

I like the idea of hoding his nose t say B- not sure he will

Thanks again for your help

Jimjams, it sounds like your son is making really good progress with his language development. You must be very proud of him, especially as he knows he is doing so well and is so pleased with himself. Children often don't pronounce words so clearly as they begin to use longer phrases. This is because the sounds of different words influence each other.

Do you think that your son understands the concept of what you are trying to do with the Nuffield cards? If he's used to naming pictures for other activities I should think that he does think he's trying to do what you want by naming the card rather than making the sound. If this is the case it would be interesting to see how he does with the Kaufman cards. Sounds like someone needs to have a quiet word with that portage worker though.

I do know what you mean about the PECS helping his language rather than his speech but the impression that I got from the PECs course was that PECS somehow has an indirect effect on speech development. They describe having spent "weeks and months trying to develop motor and/or vocal imitation skills" unsuccessfully in children who then went on to develop speech with PECS. They also describe systems where the child is rewarded for imitating sounds and eventually blending the sounds into words. That sounds pretty much like the Nuffield programme to me, so you never know PECS may be helping his speech too after all. Or it may be that I'm so enthusiatic about PECS that I'm reading too much into it!

Hope you manage to get your hands on an Msc student. I think it's probably the time of year when people are starting to look for things to do for next year's projects so you may be in luck.

CER

I'm not entirely sure he understands the Nuffied concept. Our SALT suggested making up songs, so i sing things like "the funny rabbit goes ff ff ff" to the wheels on the bus (ds2 loves it!). It's all quite new- but I thought that would encourage him to make the sounds as he will say swish swish swish - for wipers etc. He can point to the right sound card. It is all new though- just trying different ways. This evening he looked wuite pleased to see the cards so maybe we'll make some progress.

Interesting about PECS. I've made up some toilet training sequences- and today when he saw the "brush teeth" symbol he said "dun deen" rather than just teeth- must know that from nursery. I'm a definite fan of PECS. He really repsonds well to visual timetables as well.

His specch is coming on- today he went into my parents living room and said "dee dee dun" (tv on) rather than just moaning until someone turned it on.

We'll get there!

Must try and find myself an MSC student!

My son is 4 1/2 and has fianally been diagnosed with verbal dyspraxia.The part of the brain that deals with speech and language works slower that the rest of the brain, This is not brain damage.His oral memory is poor and that needs to be boosted.A good way is with some coloured bricks and toilet roll holder. Put two different colours in the holder and get him to repeat. I have fought for two years to get him diagnosed and he still seems to be pushed from pillar to post. They keep changing their minds over what is best for him. He is at school (mainstream) and loves it and the other kids accept him.If anyone has any information on what works to help him I would be really grateful. By the way this condition can run in families and it affects boys more than girls.

My son is 4 1/2 and has fianally been diagnosed with verbal dyspraxia.The part of the brain that deals with speech and language works slower that the rest of the brain, This is not brain damage.His oral memory is poor and that needs to be boosted.A good way is with some coloured bricks and toilet roll holder. Put two different colours in the holder and get him to repeat. I have fought for two years to get him diagnosed and he still seems to be pushed from pillar to post. They keep changing their minds over what is best for him. He is at school (mainstream) and loves it and the other kids accept him.If anyone has any information on what works to help him I would be really grateful. By the way this condition can run in families and it affects boys more than girls.

Try going to the Dyspraxia Foundation at www.dyspraxiafoundation.org.uk/ they have loads of free resources to help you with your child. Plus a phone line. Having a 6 year old girl with Dyspraxia , the help that they have provided has been fantastic. Also they have the cutest children's book called " You're So Clumsy Charle" - a favorite bed time story.

Blimey, this is an old one.