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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

Suppor thread for those with children with developmental coordination disorder

93 replies

mutantninja · 27/04/2017 16:34

I thought I'd start one as I can't find one that's already set up and wondered if there were others who would like to share. My son had an assessment recently and the conclusion was that he had DCD, not a formal diagnosis but that will follow. His school have been very supportive and he's begun a block of OT sessions privately. It's all still very new and quite daunting. He was premature, so has always been behind but I suppose I hoped that over time he would catch up. He's six and in year one, so hopefully it helps that we've started on it early. The biggest issue is his handwriting but also reading is tough for him.

OP posts:

Original poster

mutantninja · 08/05/2017 12:08

thanks, abc, I struggled to see it on your post as it was really small but Googled it and found a version I could read. It is cheerful.

s-media-cache-ak0.pinimg.com/originals/54/48/89/5448899db3121fa77e169a9879f138e1.jpg

OP posts:

abc12345 · 09/05/2017 13:15

Can any of you help me choose an OT for my dyspraxic son? Is there such thing as a dyspraxia specialist??

JellySubmarine · 09/05/2017 15:20

abc where are you based?

Original poster

mutantninja · 09/05/2017 17:04

Hi abc, I don't have much advice, so hopefully someone else will. I basically Googled and found a place nearby that specialised in children. I rang them up and had a long chat over the phone, which was really helpful. I felt they really understood what I was talking about, so felt quite confident in their abilities. It might be worth calling some local places if you have options?

OP posts:

Dannygirl · 09/05/2017 17:28

abc12345 it's perhaps worth posting in the Dyspraxia Facebook group for traffic. We are based in North Yorkshire and can highly recommend Future Steps in Darlington if that's any use. Feel free to ask anything you want to know!

Original poster

mutantninja · 09/05/2017 20:43

Unrelated to the main topic but it's really annoying me that I missed the t from the word 'support' in the thread title. How do I change it?

OP posts:

Dannygirl · 12/05/2017 10:16

mutantninja I have never done it before but I think you need to report the thread to Mumsnet and ask them to change it x

abc12345 · 28/07/2017 15:08

Hi everyone, I just wanted to let you all know we've been doing retained reflex therapy (sometimes called neurodevelopment)... we have been doing it for 6 months and the progress ds has made is just incredible... he's speaking (no one could understand him a few months ago), riding a bike, doing better at school, happier, sensory problems have gone away, he just seems much more 'with it' if that makes sense!

I really can't recommend it enough!

abc12345 · 28/07/2017 15:09

(I should say we've been doing the brushing method with Bob Allen at Windsor not exercise method)

abc12345 · 28/07/2017 15:35

Oh and thank you for your advice. I've found a nice OT. Xx

Dannygirl · 29/07/2017 14:01

abc that's amazing news! And thank you for sharing. I have just had a quick Google and it sounds fascinating, potentially very relevant for my DS too. How did you find a practitioner and the right method, was it via OT? (As we are in a different area to you)

abc12345 · 31/07/2017 14:51

I can't tell you how much it has helped.
I'd never heard of it but it was mentioned by a friend and then a speech therapist and then a tutor (they are all v experienced in dyspraxia and they all said it is the most powerful thing you can do). So I started googling!!
From what I can gather there is the inpp method which is exercises but they don't deal with under 7s (maybe because it's exercises) so that was no good for us.
Then I came across bob Allen in Windsor, it's the same principle but he uses brushing - I think he's trained others, It might be worth giving him a ring to find out where they are. He hasn't got a website because he had worked on word of mouth for over 20 years but he's v happy to speak to you on the phone..

There's lots of threads on mumsnet too if you search

abc12345 · 31/07/2017 14:53

Ps. I did ask an ot about it and she said she thought it would be v helpful for him but be very careful to make sure the person you see has a lot of training/experienced because you can do a one day course onnit but that isn't really enough

Squaddielife · 02/08/2017 15:23

Hi everyone
Lovely to find this thread :)

My DS age 8 has dx of Dyspraxia (also know as DCD I believe) and Hypermobility. He also has slight scoliosis.

He has seen numerous specialists/consultants over the years and was dx by the muscle team at Oswestry (they checked him out for muscular dystrophy which was neg).

He has had speech & language therapy both through our local GP and school over the years (probably the last 5 years) and now the school SENCO does a session with him each week. His speech is fine but vocab is narrow.

All in all he is an absolute delight. Behaviour is super. No melt downs, does what he's told. Embraces change. Very social both with kids and adults. Loves sports and tries his best although he's not great with team sports. Excels at swimming.

I feel that his weakness is more the academic side. He needs repetitive learning styles and i'm worried that this will slow him down the older he gets. His reading is age appropriate now but his maths and handwriting is probably a year behind. I'm going to see what the school puts into place this coming year and consider maybe a private tutor.

Mobility wise he's stable and getting to be quite a quick runner. Still can't ride a bike or tie shoe laces though and hates his scooter.
I've been told horse riding and the trampoline is good for hypermobility so have that in mind too.

He still rolls over on his ankles slightly so the paed has referred him back to OT for assessment then possibly back to podiatry. I've got him in Asics trainers and they're the best for structural support of the ankles and he has insoles in his school shoes.

sahbear · 02/08/2017 20:24

Hello, I came on looking for some advice and spotted this thread.
My DS age 10 had a diagnosis of Developmental Coordination Disorder 6 months ago.
My question is should I encourage him to 'own' this diagnosis, and understand it better? He is totally adamant that the paediatrician is wrong, that he is good at sport and balancing and basically it is all a bit embarrassing and he is ignoring it.
So DS loves sport and is very active and puts a lot of effort in to try and cover up his poor motor skills. He devotes a lot of time to scooting and trampolining at home. He is in 2 team sports teams and although he is not good he gets by with perseverance and enthusiasm.
So my question is should I talk to him about his DCD (he likely to get upset, say paediatrician is rubbish) or leave him to it.
School have given him some 1 to 1 (15 min a day OT and handwriting or touch typing practice) which he tolerates. He us doing OK at School but I am sure he will find yr 6 harder, so wwyd?

Dannygirl · 04/08/2017 19:15

sahbear that's a really difficult one. My son is aware of his struggles and found it a relief to know this was caused by dyspraxia so for him it has really helped him to understand it and himself. I would be tempted to talk about it gently with your son but not to push him to 'own' it. He maybe isn't ready to hear it just yet and wants to be the same as everyone else. I don't know though I think it's complicated for them bless them. Good luck xx

sahbear · 06/08/2017 15:52

Thank you Dannygirl. I really hoped he would recognise himself in the diagnosis, but instead he found it upsetting, and we haven't talked about it since. I plan to find a time in the summer holidays to talk about it with him, but I am not really sure how to approach it in a positive way. His handwriting is terrible, but he would say that it is because he doesn't like it and doesn't try, rather than it is difficult. His self image (being cool) is really important to him, and having a DCD doesn't fit with his own idea of his self image. For example he finds cutlery really difficult. At the end of a meal he has food on his face and hands and finds it embarrassing but wouldn't admit that it is difficult to use cutlery only that he doesn't like it.... Maybe I just need to give him time.

abc12345 · 06/08/2017 19:35

Maybe try and focus on the positives e.g. "Now we know what the problem is there's lots we can do to make it better" like fine motor activities for the writing and cuttlery problems.
There's also some famous dyspraxic people like einestien and Daniel ratcliff. Maybe mentioning people that went on to do great things might put a more positive spin on it fir him

Dannygirl · 06/08/2017 22:05

I think give him time - maybe also subtley let him try slightly different strategies that you think will help him - without necessarily labelling them as a 'dyspraxia' thing. I know it's difficult when children want to be the same as everyone else but maybe just small things like giving him heavier/deeper cutlery and encouraging him to learn to type rather than write or giving him different pencils to try...so things which are likely to help him but without explicitly saying it's because of his diagnosis....good luck x

Dannygirl · 08/08/2017 19:42

Please could I have some advice. My son aged 10 is going into Year 6 in Sept. Diagnosed with dyspraxia and has very poor fine motor skills. His handwriting is mostly illegible and he tires easily when writing. School are compassionate but a bit useless so he doesn't have any adjustments in place for writing in the classroom yet. However I think we need to push for this, especially as he is sitting some 11+ exams in Jan. My question is about the options - Scribe? Laptop? Something else? Any advice on pro's and cons? How to go about it? How long does it take to learn the new skill? Etc. Thank you for your help x

sahbear · 09/08/2017 06:48

How is his touch typing? DS1 started on a touch typing online tutorial (Nessy Fingers) 10 min a day in school. He has found it really hard and I am not sure it is the answer, but the OT recommended it, so I guess good for some. Would extra time help?

Dannygirl · 11/08/2017 07:52

Thanks sahbear it's slow at the moment but I think we should work on helping improve his confidence and speed as it's likely to be the best option for him. I will try Nessus Fingers or similar and see how we get on

abc12345 · 16/08/2017 18:27

My friend who has a son with ASD just told me that he doesn't have to queue at legoland and an adult 'carer' can go with him free of charge....
it got me wondering if there are any 'perks' (sorry I can't think of a better word) for a child with DCD that I don't know about??

BoogleMcGroogle · 16/08/2017 21:13

abc.... same at the Natural History Museum. DS has hypermobility ( so he can't stand for long) and is a chronic figetter. We jumped the queue with his DLA letter. Lots of places let a carer in free with a DLA letter, but ido save this for occasions when I think he genuinely needs extra help ( mostly when there's lots of walking or involves sitting being quiet, so he might need time out while DD wants to stay there.)

littleoldme · 21/08/2017 22:40

Hi - My son has asd and dcd. Going to lurk !

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