DCD, hypermobile joints, oral dyspraxia and more?- what can I do to help? sorry long

[pollyanna]

My ds (aged 5) has the following problems:

1. oral dyspraxia (and/or verbal?). He was diagnosed when he was 4. This shows up by excessive dribbling, poor eating, and by not being able to pronounce all letters properly. He has improved since he was diagnosed, but still can't say words with "C", G" or "K" in at all. He isn't improving on this at all. He has sporadic nhs speech therapy and a bit of private therapy. He is still a really messy eater.

2. recently his private speech therapist suggested we go and see an OT. He also got referred on the NHS. The NHS one said he had really weak muscle tone and he does trampolining weekly. The private OT said he has Developmental Coordination Disorder and hypermobile joints and he does exercises with her. She also said he had extremely weak muscle tone. She said at this stage he doesn't have dyspraxia (as opposed to oral dyspraxia, which she doesn't dispute), but needs to be monitored.

3. he has poor minor motor skills too - this is connected to his oral dyspraxia - which means, in practical terms, he can't write very well. Until recently someone came into the school to practise this with him, but she has stopped now.

4. I am also concerned about him in other areas. I am pretty sure he isn't autistic. But wondered whether he might have aspergers. I can't really say why I think this - he is just a bit strange! The main reason is he is quite inappropriate. He doesn't get messages from other people, so, for example, he will hug them too much when they aren't interested, will hurt them too, but not because he is being violent or angry. He doesn't get invited back to people's houses at school. He doesn't get jokes or sarcasm and takes everything very literally. He is very oversensitive, and we can't watch anything on television because it always scares him - even if he has seen it 20 times before. (this included for a while, tellytubbies!). However, I did that "mary kate" (is it called?) test on him, and much to my surprise, he did pass it.

5. He took a visual perception test and passed - what does this mean?

I suppose I am asking if anyone else has experience of any of this, what I can read on it, and what I can do to help him. It is strange because normally if there is anything I need to find out about I just read up on it and get on with it, but with ds I seem to be being very ineffectual.

Sorry to ramble on so much!

I know you'll get some good advice here once people are up and about. Meanwhile I just wanted to send you some hugs. My DD (5) was referred for OT & physio and she was having a few problems. They have said that she has hypermobility, low muscle tone & dyspraxic tendencies. She has problems with her speech as her tongue doesn't seem to move very well. Like your son, her motor skills are poor and she's been having trouble writing. She's now waiting to see the paed. As I said before, I'm sure someone will be able to give you some good advice and some suggestions of things to read.

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OK point 4- about the AS- dyspraxia and autism overlap- so it is very common for children with dyspraxia to show autistic tendencies as well.

Have you seen Madelaine Portwood's book - agh can't remember the name- Developmental Dyspraxia I think- anyway I would say it is a must for any parent of a dyspraxic child.

Another good book which talks about the sensory issues involved is Stella Waterhouse- "a postitive approach to autism". It's far from just about autism though- also goes into dyspraxia and where it fits- and the sensory problems. Might be worth seeing if its in your local library anyway.

My eldest son is autistic and pretty dyspraxic (including verbal), my 2 year old almost certainly has verbal dyspraxia (although not oral)- and yep the NHS is useless. I'm hardly bothering with them for ds2- although I will try to get an NHS diagnosis. I went to a Nancy kaufman workshop- might be worth emailing her to ask if she plans to come to the UK again. Her system is easy to use (I use it with ds2 already and he's only 2) and she is very veyr helpful. Her website is here . Also have you see the apraxia kids website?

Also are you giving fishoils. Nordic naturals pro-efa is recommended by apraxia kids as the best for verbal dyspraxia- I've ordered it from their shop a few times- comes through very quickly.

I alwasy have trouble linking to her webiste from here. It's kidspeech.com

hang on let me try again linkkidspeech.com\here{}

again!

Thanks everyone. Yes, I do give ds fish oils (eye-q) and his teacher has said there is a big improvement in his concentration - which was appalling. Where can you get Nordic Naturals pro-efa from Jimjams?

I have got the Madeleine Portwood book, which is very helpful for his dispraxic tendencies. I will have a look at the other book. Is there a book which will give me guidance on AS? I am getting increasingly worried that he might have AS

Also, I am unsure about where to go next. Should I ask his gp to refer him to a paed to see about AS, or should I go through the school and presumably, in time, he will be seen by an ed psych?

I got it via the apraxia kids website I think (from the States).

A paediatrician needs to diagnose really. What sort of things make youthink AS- a lot of dyspraxic features are similar to AS.

Jacqui Jackson's book Multicoloured Mayhem may be interesting for you. Her eldest Matt has dyspaxia, Luke has AS, Joe ADHD and Ben autism- might be interesting to compare the boys.......

Hiya,

My DS has verbal and oral dyspraxia, hypermobility and low muscle tone and also has many autistic behaiviours - although certainly isn't autistic - BUT the OT/PT/Paed etc etc have all said that it's more likely to be sensory integration dysfunction as it is closely linked with dyspraxia (as well as with children who have spent a lot of time in intensive care as small children - My DS has a complex heart defect.) The behaiviours associated with S.I.D are very similar to those in Autism.
Can't really offer much advice as we are still on the road of discovery (DS is 4) But I was just interested in the amount of similarities!

that's very true slightlymad. The stella waterhouse book mentioned below talks all about that- the sensory problems and why in some cases it leads to autism and some cases dyspraxia.

There's lots you can do to help with sensory integration though. We do a daily half hour therapy.

Slightlymad - my ds sounds just like yours, I will have to get him referred to a paed. I don't know much (well anything) about SID, but it does sound as though he could have that. I have ordered the Stella Waterhouse book.

It is only recently, once we saw a private speech therapist and a private OT that we realised the full range of problems associated with oral/verbal dyspraxia - the NHS has been rubbish.

The SALT gave us a book (american) about the "Out of Sync Child" has anyone heard of this??

Oh, and does anyone know whether we can get a statement for DS? I know he isn't very severe, but the OT thought we might, although my sister, who is a primary school teacher thought we wouldn't.

You have the right to request that the LEA perfom a statutory assessment, and if they refuse then you have a right of appeal. IPSEA's website gives a model letter.

I have the out of synch child- I think it is quite good, but I prefer Stella's book as I think it makes more sense and puts everything more in context.

pollyanna, on the aspergers issue, have you had a look at the PDD scoresheet on the childbrain.com website? It's here. I and others on here have found it quite useful in helping identify what to look for, and the scores seem generally to tally with our own perceptions of how severe our children's difficulties are.

I just did the test linked below - DS came out as "may have mild PDD" But I still think it's down to SID and verbal dyspraxia combined. For example, the SID and dyspraxia account for the behavioral issues, the dyspraxia for the speech and language ones and the hypermobility for the clumsiness and poor walking ones!
I have read the out of synch child book - but not the Stella Waterhouse one.

Pollyanna, my daughter has hypermobility, hypotonia (low muscle tone) and global development delay. She has dyspraxic tendencies aswell as some auti ones. She is 4 and we have a statement of SEN, I really think you should poush for this otherwise you will find it very difficult for your son to get the required help your son needs at school.

The excessive dribbling is caused by the hypotonia and so is the missing off of letters, this is what we have been told anyway.

I see you have already had great advice, just wanted to say hello and you are not alone!

What is S.I.D ? Is it something to do with sensory issues? Thats why they say our dd is a bit auti because of her sensory problems.

I am getting confused with all the abbreviations as we have a lovely little list of little different diagnosis's for our daughter and it is all getting very amusing aswell as confusing!

I did the test linked below too (thanks for the link Binkie)- it came out with mild pdd (what does pdd stand for??). I agree with you slightlymad - I now think that DS probably doesn't have AS but the symptoms are from SID and dyspraxia as he doesn't have obsessions or handflapping (etc)of AS ,and the main reason I thought he might is his social skills, or lack of. I must get him checked though.

His teacher said it will take 2 years to get a Statement - is this normal?

FIo2 i am also confused by all the definitions and abbreviations! (Hypotonia is a new one to me!!!)

Oh and sorry for all the questions - but just one more (I really am very ignorant of these issues) - is the behaviour described in the "out of synch book", the same as SID?

SID is sensory integration disorder.

Statements take about 6 months, they have a deadline to work within.