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Suppor thread for those with children with developmental coordination disorder

(94 Posts)
mutantninja Thu 27-Apr-17 16:34:58

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.

Dannygirl Thu 27-Apr-17 21:40:29

Great idea! My son is 9, Year 5, diagnosed with DCD and I think he may also have ASD but we are on the waiting list for assessment. He also has sensory processing difficulties. Also having OT privately which has been really helping

BoogleMcGroogle Thu 27-Apr-17 21:50:19

I'll join. My son (5) has developmental verbal dyspraxia but also has dcd. We have weekly OT, which helps and he's in a small specialist unit for speech so he gets lots of individual attention which helps with writing etc. Before he started there he refused to write and he still will not write or draw at home, although I'm starting him ( with heavy bribery) on the Teodorescu scheme this week. At the moment our challenges ( meant in a positive way) are getting dressed in the morning , following a bedtime routine including putting on pyjamas and remembering the morning routine at school without need for his teacher to put on her special face. On the plus side DS had a go at doing up a button of his own volition last week and today he asked to play with HAma beads before bed. He's been very challenging at home lately, and we are really focusing on being low key, calm, structured etc. Easier said than done when you also have an eight year old with a busier social life than the Kardashians, but we try!

mutantninja Thu 27-Apr-17 22:18:13

Hi Dannygirl and Boggle, hopefully we can make this useful. Nice to meet you both.

It seems there are so many facets to all of this. For my son it's the fine motor skills and, specifically, handwriting that are the key issues but he gets overwhelmed in certain environments, especially parties and loud places.

For school the starting point is getting his hands stronger and building core strength. It's tough though, I get home from work, we do exercises, then reading, then tea, then it's time to have a bath etc and suddenly it's late and then he's tired in the morning.

How do you manage home so it's not a stressful place. I want home to be somewhere he doesn't feel pressure but am also aware that we need to do regular activities to help.

mutantninja Thu 27-Apr-17 22:19:20

Social life of the Kardashians grin

deeedeee Thu 27-Apr-17 22:46:21

I have a 7 year old boy with DCD, who is in main stream school with full time one to one.

Curious about you all talking about private OT. What happens at OT sessions?

mutantninja Thu 27-Apr-17 23:16:12

Hi Deeedeee we've only had one session so it's hard to give much info. They did some core strength activity, some visual recognition games and some handwriting work.

I haven't been given the opportunity for one on one at school, maybe that gets covered with you? How did you arrange the one on one at school.

As an aside, from the private OT I've been given lots of home exercises, which I'm happy to share. Just PM me.

BoogleMcGroogle Fri 28-Apr-17 12:30:59

Our OT sessions are similar to Mutantninja's son's. We go to a clinic and spend half the session in the 'soft play' therapy area (with special equipment/ swings). We work on core strength, balance and also vestibular activities as this is an issue for my son. Then we go through to another room where we do fine motor tasks and sensory awareness activities, such as theraputty, pegging, dressing practice. my son is a million times better when I don't join in so I've taken to taking a book along and keep half an ear open in case I might learn something. In my view, it's well worth the investment. DS gets DLA for his verbal dyspraxia, so we spend that at the moment as he gets so much speech therapy in school.

We don't do too much at home. We do school reading and we are aware of his speech all the time. DS won't engage with exercises at home, so we try to fit activities into our day to day lives, like visiting soft play, doing Park Run, scooting etc. We sometimes work on a specific target with him, such as doing up buttons, as this seems more motivating than practising exercises in isolation. There's been lots and lots of therapy in our lives (mostly SALT) and he's wise to what he can't do and just wants to be a little boy at home, so I can sort of see his point I suppose.

Home can be chaos and I always feel as if I'm dealing with a hundred competing demands. But I've noticed the more chaotic I am, the more he reacts to this (with helpful expressions of disapproval such as flooding the bathroom, upturning fruit bowls and emptying the laundry basket over the landing). I've started to let him know what's happening, plan activities that relax him (play doh/ lego men), we use a tick chart for the bedtime routine with the promise of iPAD in the morning if he does it. I give him time to do things (dressing etc) and to answer/ plan what to do. I pick my battles and try to put myself in his shoes a little more, and try in vain to avoid the bribe/threat cycle. It's easier said than done. Honestly, if you'd come to my house at about 6.45 last night you would have wondered when the earthquake happened!

Dannygirl Fri 28-Apr-17 13:52:24

Good to meet you all! My son has very delayed fine and gross motor skills so handwriting as well as hand/eye coordination (most sports basically!), balance, and awareness of where his body is in space are all issues for him. He is sensitive to loud noises and texture etc. All these challenges are linked, part of the same group of neurological conditions. Have you read The Out of Sync child? I found it really helpful and basically recognised my son all the way through! Our OT sessions are similar, they are focused on his particular difficulties so lots of hand strengthening activities, climbing, things like learning how to tie shoelaces, bouncing etc. We also have a home programme and I am also very happy to share it. The OT has really helped with his emotional regulation and his meltdowns are fewer and further between since he started treatment (although saying that - yesterday was very challenging!!). It's so difficult to fit exercises in and we usually have to persuade/bribe/ negotiate with him to do them which isn't ideal. Also investigating orthotics for his shoes as he is hypermobile and that should help too. Lovely to have a virtual support group xx

CalliopeSings Fri 28-Apr-17 21:40:25

Hello everyone. My son is yr3 and was diagnosed with DCD in yr1. Handwriting is a big struggle. Following a lot of support his writing is just about legible now but school are now trying to get him to do cursive which just seems crazy.
He finds the social side of things hard too. He does have some friends but can be quite rigid about who he plays with and isn't very resilient. I do worry this makes him a bit of a target for bullies sad

mutantninja Sat 29-Apr-17 10:18:47

Hi Calliope, nice to have you join. So, I woke up this morning to find DS sitting on the bedroom floor. "Mummy, the Theraputty is all mixed up". It was. It had arrived yesterday.

MrSlant Sat 29-Apr-17 10:39:37

<waves> I have a son with DCD/ASD/ADHD. He was diagnosed at around 7-8 and with diagnosis and help really came on well in school. It was hard with sport because he found the loudness of it all too much but this came with time.

He's 17 now and so sporty it makes me laugh! Has a great gang of friends which started when he went to secondary school and found his 'tribe' (most of them ASD but high functioning). He is an absolute joy and delight to be around can 'pass' as 'normal' but is very accepting that he isn't NT and wouldn't want to be anyway because he is very comfortable in his own skin. Against everything I expected we are looking at uni for him but probably locally so he can live at home the first year. He's bright but not academic (not really the sorts of children who fit into the tick boxes of our education system) yet still passed a decent amount of GCSE's last year. Although I'd love to reassure you all that the handwriting will come with time. We just gave up on it but that is also fine because you can have a laptop in school and for written exams with diagnosis!

Things I found helped. Making it hard for him to get to the stuff he could mix up/break then neither of us had to suffer the consequences. Strict routine. Time count downs to every single thing that was going to happen so he was prepared (I still do this with all the children, makes me laugh that some people just go 'food time now' or 'we are going out' without a good 15/10/5 minute warning, I've got to stop!) Getting him to do lots of sport, which seems the opposite of what they should need but I've found that with nearly everything he has done it has taken him longer to get the hang of it than everyone else but once he has got the hang of it he's pretty good/above average. He even learned to tie his shoe laces. At 15 but hey, he got there and we had a good laugh and I was still as proud as if he'd been 9 grin.

mutant I am so there with the "Mummy, the Theraputty is all mixed up" moment. We've had a few of those.

Oh and weighted blankets/a sleeping bag. He really likes the feedback of either a weighted blanket or a sleeping bag in front of the tv, something about the all round sensory feedback helped him keep still.

mutantninja Sat 29-Apr-17 11:06:53

Hello MrsSlant, thanks for your post, it's lovely to hear that your DS is doing so well, I expect that's been a long road with a lot of effort for you both. Thanks for sharing, it's very reassuring. For me, if I could know that DS would be happy, doing ok and with some good friends that would be as much as I'd want. Like others, I worry about future bullying, DS is the smallest in his class too.

mutantninja Sat 29-Apr-17 11:07:38

I'm going to order your book, Danny.

MrSlant Sat 29-Apr-17 13:08:35

mutant if someone had come to me 10 years ago and shown me the boy here in front of me right now I would have wept in relief! I was terrified of him going to 'big school' but we had a really good handover from primary school and they supported him enough in his first year that he was confident enough by himself in year 8. I also hadn't thought that in a year of nearly 200 children there would be more like him so the whole big school thing was good! Yes, lots of work from lots of people but worth it. He's actually so much easier than his NT brothers now grin.

Dannygirl Sat 29-Apr-17 18:52:57

MrSlant thank you for your post - that is wonderful to hear and so reassuring! So interesting also about the sports - I just can't imagine that right now!!! Can I ask if you have any advice about senior school choices as we have to decide in Jan for my son. It's difficult to assess if the SEN dept is any good from a quick chat with them. I am thinking pro's and cons of small vs big schools - as you say in a big year group he is more likely to find like minded souls! But a large school could also be overwhelming. mutantninja it's a great book I hope you find it useful. It covers DCD but also the other sensory processing difficulties - a lightbulb went on for me when I read it as I realised my son's difficulties extended far beyond just poor handwriting and coordination! It's helped us get him the right support xx

Dannygirl Sat 29-Apr-17 18:54:34

MrSlant I am laughing at the time count downs - essential in our house for everything!!!!!

mutantninja Sat 29-Apr-17 20:55:56

All the laces from the lovely, animal themed, lacing boards have been given new roles, tying up baddies. They met with the recruitment consultant earlier today and all agreed it was a better use of their time.

mutantninja Sat 29-Apr-17 21:35:58

Also, k'nex made my, not DS's, fine motor skills better but now my fingers hurt. Glass of 🍷

MrSlant Sat 29-Apr-17 21:54:53

Dannygirl we went with the school his consultant and OT said would have the best support for him, although there isn't a lot of choice where we live. It didn't work perfectly as they messed up a bit at the start of his GCSEs but we found our way in the end.

Not having read the book hearing what Danny says it is a lightbulb moment when you realise that it's not just the individual issues but the whole child who is 'wired differently' all the way through. It's so weird though, I wouldn't change a hair on his head or a minute that we struggled. He is absolutely perfect to me, well and a lot of other people who meet him. It seemed so overwhelming at first, so scary and overwhelming but I have this amazing, almost adult, who is just brilliant and a joy to be around.

When I say he is 'sporty' he is useless at any sport requiring a bat or a ball but running and cycling and swimming (straight line stuff generally!) he excels at and as a geek takes it all very seriously with his training and nutrition. Obsessive tendencies can work out quite well if pointed in the right direction!

abc12345 Sun 30-Apr-17 07:57:25

Hello everyone, this thread has come at the perfect time for me as my son has just been diagnosed with dyspraxia and oromotor dyspraxia. I've been reading through all of your suggestions.
Can anyone help me with how to talk to him about it? He's 5. I don't know how to break it to him. Xx

abc12345 Sun 30-Apr-17 08:33:20

Also how much help are you getting in school? I have a meeting with them and I need to know what I'm asking them for...

Madhairday Sun 30-Apr-17 08:41:58

Very similar story to MrSlant so wanted to encourage you. DD is now 16. She was diagnosed with dcd/dyspraxia at 11 (though I'd been pushing since she was 6 as it was obvious; they ' didn't want to label her' hmm ) despite non diagnosis I followed a lot of advice from the Dyspraxia association. We bought a book called Caged in Chaos which was very useful, written by a secondary school age girl with DCD with lots of tips.

DD had a really hard time socially in primary school. Bullying etc. It was hard. She was terribly disorganised and couldn't do any sports very well, but by 11 had discovered xcountry running which she could do well with her own unique slightly loose sided style grin

We had timetables stuck on walls so she could remember things, warnings like pp about doing things, she had some fiddle toys and 'chewelry' as she was very mouthy and had a tendency to chew everything in sight for sensory reasons.

Her handwriting has always been awful. It was such a relief when her high school senco said that there's no point forcing children like this to try and perfect something that's not going to happen. It's what we have technology for. She uses a laptop all the time now and has use of it in her GCSEs which are starting in 2 weeks.

Friends wise she has been so much happier in high school, particularly since y9 when she really found her tribe. She has a lovely group​ now - they all call themselves the geeks and weirdos but they're absolutely brilliant kids. Still been some bullying but lessened as they've got older. Hoping that sixth form college will be another turning point.

She's doing fairly well academically. I'm so proud of all she's achieved in the midst of her chaotic brain and fumbly fingers and stumbly feet. She works really hard.

She still can't do most sports apart from running but she gives them a go. She's happy to banter with her mates about how bad she is, same with science where she keeps breaking the equipment (teacher very understanding!) It's a bit worrying as she wants to do biology and chemistry A Level!!

Just to reassure you really. These children can do so well despite their difficulties. It can make them stronger. It's so tough as well and so frustrating when the system doesn't take you seriously or seems to disregard their condition. You have to be that pushy parent again and again to make sure school are doing all they can.

But they can come through it.

And like the pp said, I can't imagine DD without DCD. She's scatty, crazy, loud, energetic, positive and confident. She's funny and such good company. I wouldn't take it from her for all the tea in China, though I would have taken all the bullying and misunderstanding and pain.

CrunchySeaweed Sun 30-Apr-17 10:00:00

Hello everyone. I have a 9 year old with DCD. Years of struggling at school & not knowing what was going on. Good to have a group 😊😊😊

CrunchySeaweed Sun 30-Apr-17 10:03:15

Can I ask do any of your children struggle with controlling the volume of their voice (don't know if this is DCD symptom or if my son is just v loud!!)

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