Suppor thread for those with children with developmental coordination disorder

[mutantninja]

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.

One thing I have learnt is important is to sit down with whoever is taking your child for games so they have a very clear understanding

K'Nex LEGO and using a computer at school have helped my son

Hi Crunchy, thank for joining and for the tips. We don't seem to have a significant issue with volume, though I do say 'use your indoor voice' quite often. Saying that, most of DS's friends seem to talk at full volume too.

Other things which may help: Faber Castell GRIP pencils crayons and felt tips

abc12345 it's a really difficult one which I struggled with hugely - how and when to tell my son about his dyspraxia. In the end, once he reached around 7 he started noticing he was different to other children and got upset about it, it was then that I told him and it was as if a weight had been lifted from his shoulders (bless him). I said his brain worked on a different operating system to some other people, he finds some things more difficult, it's not his fault etc. I told him about Daniel Radcliffe (Harry Potter) being dyspraxic and how he is really good at some things and has to work harder at others. His teachers all know about it and my son is quite open about it with his friends. It's really helped him understand himself which I think is important with self esteem. The Dyspraxia Foundation have some books/leaflets on this topic which you can buy online xx

madhairday thanks so much for sharing your experiences it's wonderful to think of them finding their own 'tribe' at senior school xxx

Lovely to hear about older children doing so well.
We've found sports also really helpful. Like others have said anything involving bats, balls or other people is out. But DS(7) can run junior parkrun (2k) in under 9 mins and today swam 10 metres after several months of 121 lessons.
Sports also seem to calm him. He is extremely well behaved at school and very anxious to please his teacher. But it's a bit like a pressure cooker and during evenings and weekends he can just explode from the effort of being on guard all day.

Thanks for your advice. I feel telling him is the right thing to do because I don't want him to overhear it or wonder why he finds things difficult. Most people say it's a relief when they realise what's really going on.

Although, I'm still struggling with the words to describe it... he's only 5 and I want to keep things positive but I'm just not sure what to say!! what did you guys say to your dcs?

We just talked lots about how everyone is different (e.g Daddy wears glasses) and DS has a difference that makes writing, doing buttons etc harder.

In the last year we started using the word dyspraxia. DS's friend had an asd diagnosis around that time so that gave some useful context for talking about differences and naming conditions.

I don't think I mentioned it right away, there didn't seem a need, later on, when he was already getting quite science geeky we referred to him having 'different wiring' to most people. In primary school he went out for extra help with maths but so did a couple of other kids so it wasn't an issue and he had a bit of one to one but it never seemed to bother him. He is very good at letting things go over his head though, whether that is just him or part of his diagnosis will never be untangled though! I think it's something that initially seems very important to us as adults but not so much the child.

MadHairLady it's so lovely hearing your similar experiences to us. So sorry your DD has had bullying issues though, DS did but didn't notice (it was brought to my attention but had gone right over his head!). When they find their 'tribe' it's just the best feeling isn't it?

There's also a really supportive private Facebook group called 'Dyspraxia, a friendly ear, here to listen' which I have found very helpful and informative x

Thanks for all the tips Dannygirl

It's very sad to hear about bullying, I really hope your DD is happy now, MadHairLady

Calliope it must be so tough for them sometimes, the pressure they are under. Interesting some of the views around sport. My DS is a good runner and he also does football, which he seems to like. I was wondering about continuing but I think as long as he's enjoying it, we should.

Can I ask, how does it work with getting a formal diagnosis? We had the assessment with the OT, which they say is a report and assessment NOT a diagnosis. We've been to the GP and asked for an assessment there, I was told it takes 4 - 6 weeks to get an appointment, so we're waiting, and I've been into school and talked to them. Is there anything else that we should be doing?

mutantninja I expect the diagnostic process may be different by area but where we are you get a referral from your GP to a Paediatrician based at the child development part of your local hospital or similar, and it's the Paediatrician who diagnoses formally. In some areas it may work a different way. I am in North Yorkshire if that helps? I can be more specific if you need. We had already got an OT report and report from school which the Paediatrician reviewed as part of the process. How open were the school to look at making adjustments etc? X

I think it varies by area. We first went to GP (on advice of school) who referred DS to paediatrician. The paediatrician said he was pretty sure it was DCD but wanted an OT and physio to advise. DS had a dual assessment with the OT and physio where they timed him doing various tasks and graded him on a percentile for various gross and fine motor skills. Based on his low scores they recommended a DCD diagnosis to the paediatrician who actually had to be the one to make the actual diagnosis. He then promptly said there was nothing he could do and referred DS straight back to OT and physio

It sounds quite convoluted but it actually happened quite quickly. DS had 3 blocks of therapy and the OT went into his school to discuss various strategies with his teacher.

We are in Surrey BTW.

Can I ask what assessments your dc had? Was it the M-Fun (Miller functional assessment) - what sort of scores did your dv get?

I only ask because ds has just had an assessment, but there is no mention of dyspraxia or dcd, and the report is vague to say the least.

Does anyone see a private physio?

It is a great feeling MrSlant :) dd is so much happier these days. Much more confident too, she kind of 'owns' her dyspraxia and all her friends banter with her about it - it does help she laughs at herself.
I'm trying to remember how we talked about it with her when she was little - I think we said something about her brain being differently wired - not worse or better, just different. The OT helped her a lot and described to her how she functioned compared to other children. The OT told us it was like she was doing everything enclosed in a giant oven glove, so could only feel things as if through that - we all found that helpful in explaining what it's like for her physically at least.

It's been a rocky road but she's doing well. However, she's on the higher functioning end - but it's still been so tough. Hazey I can't remember what the assessments were now, I could try and look them out. I do remember that by the scores it was mentioned that these scores showed she had dcd but can't remember now how it was all phrased.

I've just found DS's assessment sheet. He was scored using 'Movement assessment battery for children'(MABC 2). He was graded on 37th percentile for aiming and catching but 1st and 5th percentile for manual dexterity and balance respectively. It says any score below 15th percentile indicates some dysfunction and anything below 5th indicates severe difficulty.

He also was scored on 'Development test of visual motor integration' (VMI) and scored on 4th percentile.

Hi everyone, hope you're all well.

Thanks for the info about diagnosis. We're in Surrey too, Calliope. I think if I wait for the NHS assessment appointment that will be the next step then. Can I ask, did you get the therapy on the NHS or did you have to go private?

Regarding the assessments, Hazey, we had Movement Assessment Battery Scores, 2nd percentile for Manual Dexterity, 37th for Aiming and Catching, 63rd for Balance. We also had Sensory Processing Measurement where Body Awareness, Balance and Hearing were noted as having 'some problems'. Finally we had The Beery-Buktenica Developmental Test of Visual-Motor Integration (VMI): with VMI 10th percentile, Visual Perception 21st percentile and Motor Co-ordination 7th percentile.

There was also some observational stuff so the whole report was about 20 pages (not overwhelming at all ).

*Hazey' no mention of Dyspraxia on our report but did say DCD. We're doing OT privately (the assessment was private) until I get to the NHS and see what's available there, if anything.

Danny, school seem pretty open to helping so I hope we start to see that. We're lucky it's a small school.

hazeyjane I looked up my son's scores which was based on private assessment by the OT. It says he fits the criteria for dyspraxia diagnosis. Like mutantninja my son was also tested using the Movement Assessment Battery for children, he scored 2nd percentile for manual dexterity, 9th for aiming and catching and 1st for balance. He also scored 13th percentile for visual motor integration on the Beery-Buktenica test. His visual perception skills were tested, also his handwriting and we completed a sensory profile (Winnie Dunn). Hope this helps. Great news the school is being helpful mutantninja I found that when I could explain to them exactly what DS struggles with and why, and suggest some strategies that would make life easier for him, they came up with new ones themselves that I hadn't thought of. Just small things like his own cutlery that is a bit heavier than the rest to help him at lunchtime, the PE teacher not blowing a whistle without warning him as he is very sensitive to noise etc.

Oh and even with such low scores DS isn't entitled to any NHS Physio or OT in our area because he isn't "bad enough"

Dannygirl that's really bad your DS doesn't qualify for NHS therapy. He has very similar scores to my DS and he got one set of 6 physio sessions and 12x OT sessions.

DS's diagnosis is DCD but I tend to say dyspraxia as (marginally!) more people seem to have heard of it. To be honest I'm not really sure what the difference is??

CalliopeSings I know! I just blindly accepted what the consultant told me but maybe I should have challenged him on that...I am not sure on the difference in terminology, I think DCD is a newer term but they mean the same?

This cheered me up so I thought I'd share it with you guys...