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dyspraxia/dcd

13 replies

dyscovery · 17/07/2010 20:51

Can anyone help? I believe my son has dyspraxia/dcd but we live in Northern Ireland and Im being told that I cant get a diagnoses in NI. though i know kids that have. the salt says he has dyspraxic tendencies in his speech. the education psycologist says in her opinion he has DCD but she is not allowed to make a Diagnoses. the OT says he is borderline motor skills and in her opinion he doesnt have it . The peadtrician is an autisim specialist and seems determined to label him asd. He has a autisim assessment next month. HELP

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dyscovery · 17/07/2010 20:52

oh yeah hes 4

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Marne · 17/07/2010 21:05

Hi dyscovery- you might get better advice on the sn board, i'm not in Ireland but i am having similar problems regarding my dd1 (6), she was diagnosed with Aspergers at the age of 4 but has clear dyspraxia traits (poor motor skills). I think its very hard to get a dx anywhere for dyspraxia, i have read several stories of people who have not been diagnosed until they are adults. I think its due to the lack of understanding, most school nurses/teachers havn't got a clue what they are looking for regarding dyspraxia, ASD is becoming more well known and many schools know the traits for ASD. Some ASD traits are similar to dyspraxia which is why some children are getting the wrong dx. If you feel he is dyspraxic and not ASD then you need to put your foot down and don't except a dx of ASD. You know your son best so follow your heart.

TurtleAnn · 17/07/2010 21:41

Why can't the paediatrician diagnose this? Just because he has a specliaism in ASD doesn't make his qualifications as a paediatrician void. Can you ask for a second opinion from another paediatrician? Any paediatrician should be able to make this call formally. And take the SaLT and OT reports they should carry weight but probably not enough without a second opinion from a paed.

rabbitstew · 17/07/2010 22:30

My ds1 needed to be taught how to roll over, crawl and walk and he still hasn't got a diagnosis of dyspraxia. His paediatrician always said drs. don't really like to have to diagnose conditions like dyspraxia until a child is closer to 6, simply because so many of the disorders overlap each other and the most relevant one in a particular case may not become obvious until a child is older, as some issues diminish whereas others become more acute with time. Motor skills in particular are an area where at age 4 there is still a huge range of what is considered to be an acceptable level of motor skill, whereas in a couple of years, the slow developers and the children with lifelong problems will have separated themselves out. There is also the possibility of physical causes that have to be ruled out, and it just isn't easy to get it right at a very young age - so lots of children diagnosed young end up with multiple diagnoses, because the initial one ends up not being quite appropriate, so another is added and so on and so on, until a child has a long list of disorders to their name, some of which are no longer appropriate, but which remain on their record because otherwise someone would have to admit to having been wrong in the first place.

Of course, this delay in diagnosing would be all very well if our medical and school systems actually treated a child's obvious symptoms without the need for a definitive diagnosis, but without a diagnosis, you get b*gger all help (which is probably only marginally less than you get with a diagnosis a lot of the time), and nothing in the way of closure - just the knowledge that something isn't developing quite right with your child and that it is not going to right itself on its own over time. And it is known to be important that a child with dyspraxia or an asd does better if they start getting help as early as possible.

If they suggest your child has an asd, but you feel strongly that actually his main issues are around motor skills, then argue your case - they can't accurately diagnose without a bit of help from parental evidence in any event. But most importantly of all, keep pushing for help regardless of whether you get a formal diagnosis, and make a big thing of the issues that you believe are the most important, providing written evidence of all the things that you see at home that they may not see in clinic to back you up.

rabbitstew · 17/07/2010 22:37

ps my experience is that the parent's gut feeling is proved right in the end, but then that is just personal experience...

dyscovery · 18/07/2010 18:37

thank you all for your input. Marne, what is the SN board? turtleanne, the paed could dx but she probably wont she deals with ASD. a different paed in the area deals with ADHD. she is not a consultant paed she is a associate specialist!! rabbitstew, you are probably right just wait and see take things slowly so he isnt dx with wrong complaint. I'm just so impatient and i keep reading the sooner the dx the better. I dont know what'll happen but at the minute anyway he has a SEN statement appropriate to his symptons just no DX. Again thanks for your replies, i havent been on here since he was a baby.

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Hassled · 18/07/2010 18:45

dyscovery - if you search under Topics (above), there's an A-Z option and you'll find the Special Needs topics; that's what's meant by the SN Board.

I have 2 DSs with Dyspraxia - one Verbal, one Motor. One of them has some Aspergic tendencies as well - the problem with diagnosis is that there are just so many overlaps with other conditions. Someone here once advised me to think of these conditions like the Olympic circles.

Dyspraxia is a medical condition so it needs a medic, i.e. a doctor, to diagnose, so yes, the SALT, the OT, the Ed Psych etc can all say "we think he's Dyspraxic" but they can't actually make a formal diagnosis.

Have you looked at the Dyspraxia Foundation website? It's very good - and the symptom checker may help. Just keep on pushing - it could well be that he does have ASD, but also Dyspraxia (think Olympic circles). And see how you get on with the assessment next month - that might help.

dyscovery · 19/07/2010 12:01

thanks hassled will look under sn

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bubble2bubble · 19/07/2010 12:24

Also in Northern Ireland and have 5 year old with Dyspaxia.
Have never actually heard of anyone around here getting a diagnosis except verbal dyspraxia. I tried to pursue it with the NHS OT's but got precisely nowhere. OT in this area is basically non existent

DD was first seen by an OT as part of an autism assessment and discharged. Then seen by an amazing private OT who though her gross motor skills were some of the worst she had ever seen

Two years on and a lot of private OT later DD is barely recognisable as he same child though she does go to a speech & language unit and has a VERY long way to go

Sorry not much help, but do go ahead with the autism assessment - they are actually very reluctant to diganose autism anyway, as this means they have to get you help ... Do some reading about dyspraxia before you go so you know what to say when the are taking history etc

As others have said,most of my informatin has come from th SN board!

dyscovery · 21/07/2010 20:51

thanks for you message bubble2bubble.

yeah that is the feedback im getting that they do not dx in northern ireland.

i couldnt find a private ot.

DS is starting speech & Language unit in September, though he has been getting SALT for the past 2 years and the last year it has been in nursery 3 times weekly. the school he is going to have children with dcd i know this becauses i asked if they knew anything about it.

Has your DD have a statement?

Did you get a DX?

If i cant get help here i am considering going to dyscovery centre in Wales (hench the name)

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dyscovery · 21/07/2010 20:52

thanks for you message bubble2bubble.

yeah that is the feedback im getting that they do not dx in northern ireland.

i couldnt find a private ot.

DS is starting speech & Language unit in September, though he has been getting SALT for the past 2 years and the last year it has been in nursery 3 times weekly. the school he is going to have children with dcd i know this becauses i asked if they knew anything about it.

Has your DD have a statement?

Did you get a DX?

If i cant get help here i am considering going to dyscovery centre in Wales (hench the name)

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bubble2bubble · 21/07/2010 22:16

Hiya

No she's not statemented as we were 9/10 way through the process when they decided it was no longer a requirement to get into her language unit

Doesn't have an official diagnosis other than Verbal Dyspraxia as far as the education board are concerned though school knows exactly what is going on - they have seen it all before, and most of the kids in her class have pretty obvious issues apart from S & L - I reckon at least half of them are dyspraxic
If you want a private OT the one we see is based near Moira if that is any use. CAT me & I will give you her number. I think she is amazing & completely transformed DD in the space of a few months- she trained in Sensory Integration in the States - she can definately help. The only other similar OT is based in Fermanagh I think... ( closer than Wales though! )

dyscovery · 22/07/2010 21:50

Thanks bubble2bubble. Ive only started on this and as yet havent set up CAT but i will and will get in contact.

I'm closer to moira than fermanagh.

The dyscovery centre in Wales though has all therapists educational and medical working alongside each other.

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