Has anyone got experience of Verbal Dyspraxia?

[mymumdom]

First of all, hello. I hope it's okay to begin my life as a MN'er on this board?
My son is 3.5 years old and has what we've been told is 'most probably' verbal dyspraxia. He never babbled as a baby, and was late to wave and point. When he was 2, he only had a couple of vowel sounds, no words. We started weekly speech therapy last September and the SALT is pleased with his progress. He now has most of the vowel sounds, as well as a few consonants and uses about 10 words including, no, yes, mummy, daddy. We are waiting for an appointment from the CDC for him to be assessed. We are hoping for a diagnosis, and on the back of that a statement.
It's only his expressive language that is affected, his receptive (understanding) is good and he seems to have good co-ordination by our family's standards. He's a happy, healthy 3 year old who just can't talk- he gets most things over to us by signing and with sounds that we understand. Strangers can't understand him- but his nursery staff do now he's been there around a year
He is at nursery 3 days a week atm, and they do his speech exercises with him on the days he is there. I try to do things when he is at home, but he's not hugely co operative. We do usually manage to slip a couple of exercises under the radar before he realises though.
Our problem is that we are needing to sort out schools for him in 2012. Our borough has a school with a language unit a couple of miles up the road that he could go to. It's a good school, in an okay area. He will only be in the unit when he needs ST ( 2x a week) but he will be supported in the mainstream school. This would be fine if he was an only child, but he's not.
We have three older DD's who go to a school 4 mins down the road, over the Borough's border. It's an excellent school and we moved to the area especially for the school. This school will take him if we want to send him there but he will find it hard if he can't get the support he will need in mainstream school. The ST's who deal with the borough the school is in, won't help our son as he's from a different borough; the NHS ST's from our borough will not visit the school. We will have to pull DS out of and take him to his sessions during school hours if he goes to our present school.
I just don't know how we will manage the school run if he goes to the school with the language unit, transport has been mentioned but I don't want to stick my 4 year old on a bus :(
Also he thinks he is going to the same school the girls do, and is used to it. He will be upset if he can't.
I guess I'm hoping his speech will improve enough within the next year that he can go to our present school, even if he doesn't get a statement. Has anyone's child with Verbal dyspraxia improved that much with a year of SALT?
Or has anyone else got any other advice for us? We want to do the best we can for DS, of course, but not at the cost of the rest of the family unless it's absolutely necessary.

No, that's very helpful. Thank you for replying. Luckily we are in a position to be able to pay for private speech therapy if need be but I understand what you are saying. Our borough will pay for 8 sessions a term per child in a mainstream school but who knows if they will do this in a years time?
I need to go and look at the school with the unit but they run very rigid open days and so far it's been impossible for me to attend due to his sisters commitments.
How old is your son now? Would you mind telling me how to find other support groups because I have struggled to find anyone who knows what I am talking about most of the time!

Hiya and welcome-I also have a DS (now 6) who was diagnosed with moderate verbal dyspraxia aged 3. he also had normal receptive language. I would second what Justa has said-whilst our DS did improve suffciently by reception age not to need a language unit, I do know of others who have benefitted hugely from a couple of years in such a unit and then integration back to MS school. My DS is statemented for hid S & L issues but he has other complex problems too including ASD traits and motor dyspraxia-ironically his speech is now the least of his worries ( I would never have believed this 2 years ago when we were slogging through every single sound). There is a facebook group set up by a poster from here-HayleyK-just do a search for her and she will pop up. Lots of advice on there and she is very involved in improving services for verbally dyspraxic children.
For us very intensive weekly SALT and daily exercises from me at home were the key-now I dont think you would know DS had any real issues with speech although artculation relains poor when he is excited/stressed etc
HTH

Hello. Just have to second everything justabout has said. Very similar situation: we decided - mainly on the advice of other parents who knew what they were talking about - to send our then 4 year old to a language unit 40 minutes away when we have a lovely little school just around the corner.

Verbal dyspraxia needs therapy - regular, intensive therapy before your child will make any progress at all, and a few sessions a term will just not do it.

The other factor is that many children with verbal dyspraxia will have issues with literacy. This was said to me at the time but I didn't actually realise the full implications until I realised that DD was making no progress at all with reading. A language unit will deal with this, but it is very unlikely that a mainstream school will know how to cope unless you are very lucky. So thanks to a different method of teaching Dd is now going back into mainstream school in the top group for reading. She has done 2 years in the language unit and has changed beyond recognition. According to recent assessments she just about fits into the 'normal' for language. Before starting school she actually scored zero in the expressive language tests. She has verbal & oral dyspraxia with a phonological disorder - so pretty severe.

It was a heartbreaking decision to send her away to school but we absolutely know it was the right thing to do. FWIW even nearly two years on I still hate putting her in a taxi but it is honestly more traumatic for me than for her! In their nursery year the lack of speech is not such a big deal but as they get older and the gap widens with their peers it gets a lot more difficult.
The fact that your DS has good receptive language is a massive plus for he will respond to therapy, and the fact that he is using sign language means he wants to communicate which again is very positive. Dd1 was very similar at that age, but had very few consistent speech sounds at all.

Hi, I agree with everything that everyone has said! My LEA very unhelpfully closed all the language units a few years back, so we are forced to go mainstream. I would jump at the chance for a unit. The CDC said that often children only went for a few years and then very successfully went MS. I'd really like my DD to get the specific SALT that dyspraxia seems to need, but more importantly I'd love her to be in a place where she could bond with children who communicate similarly so she could build her confidence. I don't know how your DS is socially, but confidence is one of my DD's biggest difficulties - she is very self aware that she cannot talk. Since we don't have language units, I have managed to get a statement with weekly salt, 2x15 mins daily TA practice 1:1, but its only 17.5 hrs a week TA and the staff won't be experienced. My DD starts reception in Sept. I've also heard rumblings about the school SALT being overstretched and inexperienced in this area. I imagine that it would be difficult for you to justify a good level of support if there was a nearby unit which could offer everything that you need and more. A unit would give your DS such a good start when he has got a lot of things stacked up against him - consider it carefully. I have joined Hayley's FB group which is great. AFASIC charity have also helped us a lot if you don't know them. Our CDC has been great - I hope that you get them on your side too. x

hi
I can relate to a lot of what you are saying. My ds is 3.6 and has been diagnosed with severe verbal dyspraxia. My dd is 6.5 and has no speech problems. She attends a school 10 mins walk away. Ds is making slow progress with SLT but he is a long way off being understood by most people. We have been to see a mainstream sch with a speech unit in the opposite direction to my daughters sch and can apply for a nursery place. I really like the sch my dd goes to - and thought he would be able to go there -but now realize that isn't going to help him. The sch run will be a nightmare and I have put in a request at work to change my working hours so I can manage it better.
Whereabouts are you btw - I would love to join a support group but there doesn't seem to be anything in my area

Can anyone give me more details about HayleyK's Fb group? I can't seem to find it :(
Janx, we are in Hillingdon, in Greater London.

Hi, the advice here is great. My son is at the severe end of the spectrum for verbal dyspraxia, he also has a type of cleft palate so his speech is extremely poor.

Like you I have an older child that attends our outstanding local school. It's a two minute walk away and perfect for us. It wasn't however perfect for DS2 and three quarters of the way through year two we have just moved him to a speech and language unit nearly an hour away. He goes in a taxi, (there is also an escort with him) which I hated the thought of. In fact it was this that caused more upset to me than the school itself. In reality it's been fine, he quite enjoys the ride and considers himself most grown up.

I am already delighted with what they are doing with him academically but more important than that is that he is visibly more relaxed. The fast pace of mainstream wasn't right for him at this stage.

Good luck with whatever you decide.

We are not a million miles away! I am in inner London - Hackney

I would opt for the unit if you can.

I work in a secondary speech and language unit and not all children grow out of their difficulties, but the earlier they have had intervention the better.

I think the thing that makes it difficult is that you have these lovely plans for your child and you find out close to the time your children are about to go on that path that they could benefit from special education/therapy ? and its pretty hard and emotional to deal with that. For my son, I tried to press forward with mainstream with a split specialist provision at Christopher Place (charity/private speech unit) ? but then ended up stopping maintstream entirely until this year when he?s made great progress and has spent this past year in mainstream. The other kids understand him and whilst I see he still has some struggles, I?m now pretty confident that he will be fine.

My view is you have to find a way to get your child the intensive speech therapy they need to get over this disorder (or get as far as they are able to go). By definition verbal dyspraxia doesn?t resolve itself ? you don?t grow out of it ? you have to work and work at every sound. Even when they can make the sounds, they have to learn to sequence them into words, sentences etc. ? sounds that you have disappear. It?s a massive project and my biggest goal has been to get my son as intensive a speech therapy provision whilst he is still very young, whilst he is happy to sit and do speech therapy (I think older kids may be more resistant), whilst other children don?t notice and bully for differences and before all the academic side kicked in. Also, I think (though obviously am no expert) but the longer you spend making sounds incorrectly, the worse habit you get in and the harder to undo. So to me intensive early intervention was completely key to this.

If the best way for you to do that is a speech unit and otherwise you are going to have to put all your energy and reserves into fighting the system, then personally I would absolutely take the unit. You will need energy and reserves for practising and doing speech therapy every day. In my son?s case it has been for a few years. Others may need less but some may need much much more ? hate to keep saying it ? but this is a big project. You can hope that it may not turn out to be for you, but I don?t think you will ever regret doing too much for your child (which is really why we?re all on this website, because we want to find best approach for our kids) ? but you could have much bigger regrets if you don?t do enough. I have seen quite a few parents shattered from fighting for provision the whole time ? I didn?t do the tribunal process but saw that the parents who did found it all very emotional and difficult and if you can avoid it and take the unit and put your energy into fighting the disorder rather than the state, then I think there may be something to be said for that. Also, from an emotional support benefit as a parent and for your child, there may be something to be said for having parents and other children around who know and relate to what you're going through.

I would check the unit knows about verbal dyspraxia though and see whether they follow the Nuffield programme and that your son will get one to one therapy targeting how to produce speech and not just receptive speech or group therapy. I also would make sure you?re registered at the Nuffield Centre and see if you can link your therapist from the Unit with the Nuffield Centre, so that they can sit in and see what they are doing there with your child and follow through a programme recommended by the Nuffield Centre (once implemented this is likely to be the outcome of the current NHS review into the closure of the unit at Ealing ? ie., funding will be put in place for the Nuffield Centre to have an outreach programme with closer links to local therapists and speech units ? you could speak to Pam Williams at the Nuffield Centre to see if there is a way to make this work with the unit that you are considering).

If you want local mainstream schools because they can get good speech models ? then that might be right at a certain stage (my boy is now at mainstream and its right for him and he?s doing fantastically) ? but I reckon you have to have a decent foundation and amount of speech to make that worthwhile. I hated the idea of my child being the only one in a class that couldn?t speak. A mainstream school is never going to be able to offer the level of attention and help as a specialist provision. Every single thing that was done for my son at Christopher Place was with a view to helping him overcome his difficulties (e.g. as well as speech sessions, we had group oral motor, lots of language development ? lots of mobility stuff as well for my child and occupational therapy) ? my understanding is that most kids with verbal dyspraxia have other disorders, literacy problems etc. A specialist provision is more aware of identifying and dealing with all of the child?s needs. They also may have more time and better staff ratios to do it.

Good luck with whatever route you chose to go on!

Hi, I just wondered how ols were all your kids when they were diagnosed with vd? I believe my son has this but his salt will not 'diagnose' anything formally as she says hes still very young (just turned 4). The nearest Ive got is he probably has a phological disorder with dyspraxic tendancies. The reason I ask is Im wondereding whether I should push for more salt? Currently he has just got a statment and we have an agreement that the salt will see him approx every 3 weeks during term time and his ta will do daily sessions with him. Is this enough? (We've had to really fight to get this far). I've been told he's not a candidate for a unit as he has other problems i.e hes classed as having 'overlapping developmental difficulties; which no0ine is willing to diagnose more specifically.

I should say my brother has vd and is 24 and is still difficult to understand. Certainly my sons difficulties seem very similar.

I am in the same position as feynman in that DD aged 4 and a half obviosuly has verbal dyspraxia but doesn't really have it on her list of diagnoses, she has SLI and the statement says she has "severe receptive and expressive language processing difficulties and sound production difficulties" I guess the sound production difficulties are the verbal dyspraxia? I wonder why some SALTS diagnose like this and some say verbal dyspraxia?

I am going to contact the nuffield centre I think, reading this thread has made me feel so much less alone I am also going to go on the facebook group.

If I was offered a language unit for DD I would jump at it, but I totally understand the sadness at leaving a nice school that you know and all the upheaval. I am in the process of deciding how far to push about one actually its so stressful, we don't have one in the area so it would involve a long journey and probably job rethink for me, I just think the understanding of the teaching and teh early input could make such a difference.

My son doesn't have a definite diagnosis as yet, but everyone we've spoken to has said 'most probably'. We have weekly ST, and do daily sessions, at nursery and at home. Last week the SALT asked if she could put him forward for assessment at the local CDC with a view to getting a diagnosis. I said yes, of course! Our SALT is very up on the Nuffield Centre and we would have been referred there is he wasn't making any progress.
So we could get a diagnosis before 4, i suppose ( he's 4 in Jan). When he started ST in Sept 2010, he could make 8 out of the 43 phonetic sounds in the English language. At last count he could make 18. Our SALT is pleased with this although to the casual observer he doesn't seem to be making much progress as he's not speaking. He is making more noise though.
The other thing is that he doesn't seem to have realised he speaks differently to anyone else yet. When he meets a new child he goes up and makes friends, chattering away in his 'ooo ah' language. We haven't met anyone who has made a big thing about it yet, but I guess we will :(

Thanks for the message Hayley - Have joined the fb group. My ds was 3.4 when dx at the Nuffiled. They say to wait until 3. You can refer yourself there. It seems so random as to what is on offer and what is suggested.

I think my son is becoming more aware of the different way he talks. I have a 6 year old who is very sociable and chatty and I think people expect the same of my son. Because he is tall children and adults think he is older and at nursery they say he doesn't join in that much . I have gone to great lengths to encourage friendships with play dates and these have worked quite well, but with more than one child he withdraws. My daughter is great and letting him join in with her friends - but they often comment about his speech

mymumdom that is exactly what my little boy is like when speaking to other children. He is seven now and even in mainstream the other children were lovely and utterly accepting of him and understood him best of all!

As I said earlier on the thread he also has a very late diagnosed cleft palate which he has had repaired a couple of times. The last time (only last week) he said it was to help his talking! I was really surprised that he had 'got' this as he has always appeared not to notice that he sounds very different.

Interestingly DS2 doesn't have an official diagnosis of vd either, ST & paed have mentioned it at various appointments but I certainly no official diagnosis. He does however have a chromosome abnormality so perhaps they are less interested in obtaining one. When we enquired about the S&L unit we were told that speech had to be their primary education need iyswim.

Sorry if disjointed message am typing quickly on my phone before boys wake up!

I think some salts are happy to diagnose and others prefer not to, or will agree that they are symptiomatic of verbal dyspraxia but not give a precise label. I think its useful having the label so that you can fight for services (which cynically is why I think a lot of salts don't label) - so to me its worth getting diagnosed either at the Nuffield Centre if your child is over 3, or privately if before or if you want the diagnosis in a hurry to try to get on it to push for therapy asap (for the right private therapist contact Afasic and ask if they know therapist with verbal dyspraxia experience, or I have one, but she is mostly on maternity leave, but message me separately if you want these details).

used2bthin - I also moved and ended up stopping working for a while to get on top of this speech disorder. I was lucky I could do it, but it was still a massive thing - but nothing compared to having a child that isn't talking. I reckon once you get your child the provision you think will best benefit them you will be very pleased you did it. My boy now at nearly 5 is verbal and for the most part understood now by the other kids in his class and its very very exciting!

Some people here mentioned that their kids were having problems socially. I always discussed verbal dyspraxia with my son in terms of 'his words getting a bit stuck' - there is a quite good book www.amazon.co.uk/Brother-Very-Special-Amy-May/dp/1412034590/ref=sr_1_1?s=books&ie=UTF8&qid=1309169197&sr=1-1 which is about a boy with verbal dyspraxia written for kids, which might be useful.

The other thing that I found v useful for us was teaching my son to give 'clues' when we couldn't understand him - he kept repeating the word he couldn't say the whole time before that, but then we found work arounds, with both sign language (makaton) and as some sounds came and not others, getting him to say things different ways.

Hayley I promise that we don't avoid a dyspraxia label to prevent parents fighting for services! It is a tricky label - differential diagnosis of dyspraxia, inconsistent phonological disorder and phonological impairment is not straightforward and there is a lot of theoretical controversy about overlaps between these three conditions. Before I specialised in SLI and dyspraxia e.g. when I was a clinic therapist I would be quite scared by a "dyspraxicky" presentation and would always have to seek a second opinion etc from a specialist because it had been somewhat mystified at university.

think that involving the Nuffield is good advice for anyone as it bypasses the reality of clinic therapists with limited experience and knowledge at the initial stages.

working9while5 - it probably is unfair to say that was why it isn't diagnosed - sorry! (though it must be a bit depressing as a SALT to diagnose something and then not be able to provide the right amount of therapy for it on the NHS) - it just feels to me wrong not to tell parents that this is what it is or what it is very likely to be, or that it might be it, but it needs someone very experienced at this to diagnose it and perhaps they should go to the Nuffield or get a private referral to get an actual diagnosis. The reason getting the diagnosis matters so much, is because you then realise how much therapy is needed and what type is needed. It's really specific type of therapy and the difference between the therapists that specialise in this and know exactly what sounds are missing and how to elicit them and which sounds will lead onto successful productions of other sounds etc, is immense. Parents need to know which therapists and therapies are right to help their child and also, if there isn't enough or the right provision available locally on the NHS, they need to be told this and given an opportunity to put their child in a speech unit and get to the Nuffield or work out a way to get private therapy, rather than a pretense that it will all be ok.

I don't think the child has to be over a certain age to diagnose, just displaying enough of the symptoms to do it - even qualified by a 'probably' if not too sure. My child was able to get an accurate diagnosis of this at age 2. My understanding is that it depends on the child whether a diagnosis can be made at a particular stage - but that SALTS might be nervous of diagnosing, so take more of a 'wait and see' approach rather than referring forward to an expert, which is time you could spend doing the right kind of therapy if it does prove to be verbal dyspraxia.

Sorry for the rant - its not directed at you - sounds like you give great advice to parents on this!

I agree totally with you HayleyK, early intervention is key. In terms of diagnosis, it does depend on severity to some extent how early it can be accurately diagnosed. Where children are more verbal, there is quite a high degree of overlap between conditions. In our service, though, the policy is that you take a working hypothesis and treat on that basis e.g. dyspraxia would be Nuffield-type therapy without breaks with very careful monitoring. Unfortunatetly it's not offered as intensively as it should be in clinic and that is resource led. Most services should really be offering Nuffield therapy if they even vaguely suspect dyspraxia though...