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DS has been referred to the Child Development Team for suspected dyspraxia this week. I have a few Qs... Thank you!

18 replies

TroublesomeEx · 16/09/2012 08:13

Ah, well it's all go in our house!

We got my daughter's hearing aids sorted last week, and this week we're onto DS!

It was suggested to me around 18 months ago that DS might have dyspraxia. I believe I posted on here about it a while ago listing some of our observations/concerns and I was advised to take him to the GP. I eventually did (so thanks for the support I had on that matter), he was referred to the hospital and on Friday I got the letter to say that they have decided to assess him. Hurrah. At least I assume that's what it means, we've been invited to the hospital for an appointment next week.

I suspect that if it is felt he has it, it will only be a mild case. I just wondered what to expect when we go along to the appointment.

There were also a couple of other things that I wondered if it would be worth mentioning and thought here would be as good a place as any. Smile

In addition to the co-ordination/organsiation issues, he also does some other 'stuff' - some minor and just incredibly frustrating! Some more serious that's affecting him at school. I just don't know whether it would be worth mentioning, just in case, or whether it's just typical kid stuff and it will look like I'm clutching at straws/trying to suggest something. Or whether it's necessary to give them a complete picture of who he is.

He find communication really difficult. So sometimes we can talk around in circles for ages before getting to the answer. Because if we don't phrase a question exactly we'll just get anything. So a simple yes or no question will never be answered simply or reliably - we have to ask so many questions that it's more of a case of getting the correct answer by a process of elimination.

He quite often gets confused and befuddled by having to answer questions or hold conversations. Although he's really into computer animation and can talk for ages about what he's doing, what he's planning to do. He seems to be able to organise himself ok then. He's also posted on forums regarding his animation package giving advice to others (often adults) who haven't been able to do something. He's pretty much taught himself that and he knows it inside out.

But if I don't ask all the questions I'll just end up on a wild goose chase trying to find something that doesn't exist or solve a problem that isn't a problem. And there are occasions when afterwards he'll deny all knowledge of it. It's only when you can replay the entire conversation back to him that he will concede that that was what he said and why it might have given the other person in the conversation the impression that it did. Argh!

And if it's clear from what you're saying that you've got the wrong end of the stick, he doesn't correct you, he'll carry on answering the questions even if they are absolutely meaningless (e.g. "when has your maths homework got to be in?" "Er, Tuesday". "Are you sure it's due in on Tuesday?" "I think so" "Have you got any maths homework?" "no". That sort of thing.)

I can't work out if it's an issue with organising his thoughts and he finds that difficult so rather than struggle with it he'll just say anything and it's only if you ask really specific direct questions that you'll get to the 'truth' or whether he's just lying. Sad

Some of these ridiculous conversations take place because he doesn't seem able to recognise when people haven't understood so I have wondered if he's just trying to answer a question purely because it's been asked, whether or not it makes sense. So long as it's semantically accurate, it doesn't seem to matter if it's true/relevant or not.

When he gets an inevitably frustrated 'talking to' afterwards he starts off very indignant and can't see what has happened. He'll eventually claim that he does realise that the other person didn't understand. But not without having it pointed out to him and without being alerted to the signposts in the conversation that should have told him. We had two of these conversations on Friday night and a disastrous shopping trip for school supplies yesterday based on a further nonsensical conversation. So it seems that if the conversation is deconstructed and explained to him he can see it, but doesn't recognise it during the conversation.

The only comment the school have ever passed is that he "has a clearly defined sense of right and wrong". I know this means he's a bit inflexible. He is a bit. He's always been incredibly well behaved at school and at home because he follows rules to the letter. In fact the only time this is really an issue is when he's playing (yep, still plays!) with his younger sister who wants to be a bit free with the rules and mix it up a bit and he won't have it. I'm talking quite simple stuff like pretending the children in the Playmobile family are adults so that they can get married too.

He was brilliant at primary school. He wasn't ID as G&T or anything, but he was certainly one of the more capable students and they were making all the right noises by the end of KS2 regarding his future success. But this has completely fallen away at secondary school and he's wavering around the average now. I think this is linked, in part, to his (in)ability to organise himself and his thoughts and communicate his ideas in writing.

Oh and one more thing. He doesn't really have any interests in seeing his 'friends' outside school. I mean he says he has friends and he walks to school with a group of 4 boys. He claims that he and these other boys spend lunchtime in the library together, but he so rarely sees anyone outside school. He saw no one over the summer other than 2 cinema trips. He doesn't see the point in just 'hanging' with them. They don't communicate outside school - he doesn't really FB. He has an account but says he doesn't really see the point so I know he's not talking to them on there. The school always describe him as happy and popular and he seems to get on ok with people. No problems as such, but from what I can see it's all very superficial. Like he can do it enough to get by, but not sustain it. He's always been like that. I could probably count on one hand the number of times he's had a friend back to play/or been invited to another persons. But he's not bothered by it.

I think I always just assumed that the school would pick up on anything that didn't sit quite right with them, but I've started to wonder if he's slipped under their radar because he doesn't cause them any bother. He goes every day, he follows all the school rules so looks neat and tidy, doesn't play up in lessons, gets great behaviour reports. He doesn't get really get homework (different issue, the school don't believe in it!) and so isn't responsible for taking his books in. His pencil tin stays in his bag so the only thing he has to remember in the week is his PE kit. The GP did seem to think this might be a factor.

Sorry this is so long!

So I would just like to know if anyone thinks these other things are worth mentioning or if I'm reading too much into quite ordinary things.

Or whether it sounds familiar to anyone else!

Anyway, TIA x

OP posts:
TroublesomeEx · 16/09/2012 08:14

God that is long. Sorry!

OP posts:
zzzzz · 16/09/2012 08:47

This reply has been deleted

Message withdrawn at poster's request.

TroublesomeEx · 16/09/2012 09:31

Thanks so much for your reply zzzz.

I think the main thing is that I don't think he has Aspergers. I think I'm just a bit worried about looking like I think he might if I mention it. IYSWIM.

But I have realised that I'm a bit of a head in the sand person. I've spent years getting quietly frustrated by his obvious difficulties, but it took someone else suggesting it to go to the GPs. Probably sounds a bit daft but when he was a baby I was so bothered by news items about parents fearing their children had meningitis being dismissed as 'neurotic', that I avoided taking him to the doctors unless absolutely necessary, just in case I ever saw meningitis symptoms - I wanted to be taken seriously if it happened! I had no knowledge of stuff like dyspraxia. I just wondered if that other stuff was typical or whether it could be linked to dyspraxia.

My mother told me that all the developmental check ups they do was just to identify where parents were getting it wrong and that it was obvious if the child had SN Hmm and I was so keen to get it right Sad.

So I am aware that I tend to think "Oh it'll be alright" and muddle on.

Maybe I will mention it. But I don't want to start bringing up stuff that is completely NT just irritating! I just don't want them to miss anything!

I posted on here mainly because I've asked DH and he just keeps telling me that they're the experts and will ask what they want to know but I think he thinks they'll have a checklist and I think they'll ask what we've noticed.

Who knows? Not me that's for sure! Grin

That's a good idea about asking to speak to them in private. I will do that. Thanks.

OP posts:
Hassled · 16/09/2012 21:14

I saw this thread this morning and was too distracted with kids to reply - but it struck a chord because my DS2 is a teenage Dyspraxic and sounds very similar. The best representation is that of the Olympic circles - so many learning difficulties and syndromes overlap, so you might get a Dyspraxic who's also mildly Dyslexic etc. And there is very often an overlap with Aspergers - in DS2's case there are apparently "Aspergic tendencies" without any actual diagnosis of Aspergers, IYSWIM. Dyspraxics very often have poor social skills and struggle to read non-verbal cues, and of course as they get older it's more obvious because with most children that sort of thing just comes naturally with maturity. A 7 year old with poor social skills = "normal"; when it's a 14 year old it's suddenly staring you in the face.

So yes, mention each and every concern and even if they say "oh, that's nothing" you at least know what you're dealing with. In my case I'm resigned to pointing out the bleeding obvious to DS2 (you have to make some degree of effort with friendships, you can't just talk over people, you're not always right, it's not always black and white) in as kind and gentle a way as I can, and he is learning - but none of it is instinctive.

You mentioned writing - DS2 has been taught to touchtype and uses a laptop in school. It's made the world of difference - suddenly he could get his thoughts on paper. Might be worth exploring.

TroublesomeEx · 17/09/2012 12:11

Thank you Hassled!

Your comment about dyspraxics often also having poor social skills and struggling to read non verbal cues is really what I was wondering. I know that there is co-morbidity with other syndromes (like your Olympic rings analogy) but I wondered whether it was still an issue with co-ordination rather than communication as such.

The thing is there are so many things with him that, now he is getting older, are really jumping out as problematic. It's one thing to think that he found these things difficult when he was younger and was probably a bit behind his peers, but now that he is nearly 14 and many of his friends are so articulate (boys and girls) and seem so much more mature (even the 'younger' ones).

You've given me the confidence to mention everything now.

He just doesn't seem to learn so many things instinctively or intuitively.

I suppose it didn't really become obvious until I had DD(6). She's nothing out of the ordinary (in the nicest possible way!) yet her ability to collect and verbalise her thoughts and ideas are far superior to his.

OP posts:
porridgelover · 17/09/2012 19:04

I agree with what others have said. Dyspraia can be a feature of or be co-morbid with other conditions e.g. Aspergers or Dyslexia (about 50%with Dyslexia).

A lot of what you are saying about the social issues would ring ASD bells to me. Yet the difficulties with conversations could be that he has difficulties with receptive language or Auditory Processing.

I suppose what I am trying to say is that you sound as if you have plenty to ask for advice about. In your position, I would probably write down as much as possible (grouped into headings?) so that you get all your concerns across. Assessments go so quickly IME and its awful to leave feeling that you didnt get across something that may or may not be the vital 'clue'.

Who is your apppointment with- just a Paedx or the full team (SaLT, OT, Psychologist etc)

TroublesomeEx · 18/09/2012 08:56

The letter just says the Child Health Service. But I think the GP said she was referring to the community paediatrician.

I have got a big list written down! I like the headings idea though I suppose that's one of the reasons I'm asking - there just seems to be a lot but some of them are just quite small things, but all part of a bigger picture.

Do you know how long the appointment is likely to last or what they are likely to do? Will there be a series of appointments, or is a decision/dx made just on that one appointment? What sort of things does the appointment involve? Argh so many questions!

Thanks.

OP posts:
porridgelover · 18/09/2012 13:06

No idea re how long the appointment will be...how long is a piece of string? Should be 45 minutes at least for them to listen to your concerns...
I would have thought that you would be called back for further assessment if they agree with your concerns (and I cant see why they wouldn't).

Re Headings: how about this
Gross Motor....when he walked, how he finds stairs, how far he can walk for, climbing trees, bikes, stamina,
Fine Motor....pencils, manipulating toys, colouring, scissors, Lego, letter formation for writing, knife and fork skills, buttons, socks, shoe laces

Sensory....how he reacts to sounds, sunlight, smells, tastes, noisy environments, touch, clothes labels, fabrics, unexpected touch, hair washing and cutting.
Does he like to move/fidgety or is he fairly sedentary? Does he like bouncing, hanging upside down? Roundabouts?

Self-regulation.....how is he about going to bed, calming down? Does he sleep well? Is he aware that he is thirsty/hot/cold? Does he get over excited and find it hard to calm down? Or is he difficult to rouse and slow to get going?

Communication....can follow 2-step instructions or 3 (what can he manage, and when). Does he listen when you ask? Can pay attention even in a noisy place? Can you understand his train of thought? Can he work out what is going on in someone else's head? Can he follow that thread of a story? Can he recognise words and match them to objects?
Can he do turn-taking in play and in conversation?

Social/Emotional....what have you observed.

Sorry....thats very long and mostly what I find with my DS. hope its of some use to get your thoughts organised.

TroublesomeEx · 18/09/2012 13:51

Hi porridgelover. Those headings are really useful.

It's interesting even reading your examples - he hates having his hair brushed/washed/cut. He finds it painful and irritating. He doesn't seem to be aware particularly if he's thirst, hungry, hot or cold! He eats because he's fed and only drinks if he's watered. He would wear the same clothes - jeans, red t shirt, brown hooded top all year round if he could. I've said several times over the summer that he wears the same thing whether it's -10 in the winter or 28 degrees in the summer and is reluctant to wear a coat/take his hooded top off! He doesn't like noise and quite often takes himself off to find a quiet place if there are other people around.

Seems I have a busy evening ahead of me. Thank you for your pointers, it is really helpful.

OP posts:
TroublesomeEx · 18/09/2012 13:54

Oh and I've just phoned them and they've said it'll be around 45 minutes for an initial appointment.

Do you recall what sort of format the appointment will take? I suspect they'll talk to me (I'd like to speak to them alone as well as with DS) and talk to him but are they likely to ask him to do anything, or do you think it will be mostly talking?

Sorry, I know you're not going to know exactly what format it'll take, but some idea would be nice. I suppose I could have asked them when I phoned... Oh well!

OP posts:
porridgelover · 18/09/2012 22:23

OP would this checklist help you to organise this extra sensory processing information. I have posted it here before and it's useful for organising your thoughts.

I really cant guess what format your local services will take. Smile I would expect that they should get him to interact with them in some way. But I would have as much as possible organised in advance as I expect you will find that the time goes too fast. Best of luck.

TroublesomeEx · 19/09/2012 07:07

Thanks for that checklist - really useful. Smile

I have to organise stuff this morning.

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TroublesomeEx · 20/09/2012 16:16

porridge DS had the 45 min appointment with the paed. I didn't even really refer to my long list!

He got DS to do some walking/catching/moving tasks and asked for a few details/family background I told him about some sequencing/routine and communication difficulties and said he was happy to diagnose dyspraxia on the back of what I'd said and what he'd seen and would refer us/him to OT.

Now I don't wish to sound petulant, but I can't help but think it all sounds a bit too easy. Does that sound right to you?

OP posts:
porridgelover · 20/09/2012 16:26

Hmmmm what did Paedx think of the receptive language/communication issues? I would like to have that investigated before settling on Dyspraxia.
IME Dyspraxia is more of a diagnosis by exclusion type thing as it overlaps with ASD / Sensory Processing....and other stuff.

How long will you have to wait for the OT assessment?
Please do ensure that the OT you get has experience with Sensory Integration as you've mentioned that this seems to be an issue for your DS.

I feel that a thorough/good Paedx will ask for SaLT and OT (and sometimes PT) assessments before making a diagnosis. Sometimes will refer for Clinical Psychology too. Will you be seeing him again?

TroublesomeEx · 20/09/2012 16:52

I didn't really get time/chance to go into huge detail. But he said he felt it could be an issue with organising the thoughts and articulating them.

I've no idea how long we will have to wait - he said he'll make the referral but I didn't think to ask for timescales (I'm useless in these situations!). How would I be able to influence the OT we get? I suppose I'll receive a letter from them and have to phone for an appointment. But if I do, I'll be sure to specify that, thanks.

Sorry, don't know what PT is! He said he didn't think there was any need to see him again unless I felt things had changed.

Urgh. don't know what to do now! Oh well. I suppose I'll wait to see what comes of this referral. I just feel that now he's 13 and in year 9 we don't really have any time to play with!

OP posts:
porridgelover · 20/09/2012 16:59

Folk I wonder though, is the issue with organising thoughts a language based one though rather than Dypsraxia? Thats why I wonder if a SaLT ax would help?

I guess you wont get a choice about NHS/Trust OT but it's worth bearing in mind that not all therapists are created equal! Grin And knowledge is power.

PT= physio

TroublesomeEx · 21/09/2012 09:35

Hi.

I've thought about what you said. I've told the school and am going to arrange a meeting to go and discuss it with them.

I'm going to speak with them to see if they have any concerns/noticed anything at school, but might not have seemed worth mentioning.

I'll bring anything that comes from that, and my concerns, up with the OT when we see them and take it from there.

Thanks for your advice. I've found it really helpful. Thanks

OP posts:
porridgelover · 21/09/2012 12:24

Best of luck.

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