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Possible new diagnosis of DCD - any advice greatly appreciated.

(13 Posts)
nurseysarah1981 Sun 16-Feb-14 21:00:03

Hi, my dd (age 2.5y) has had two assessments at the Child Development Centre. The Paediatrician mentioned she thought dd had very strong traits of DCD and the OT agreed, as did the SALT. We then saw the OT and SALT again and both picked up on more diagnostic criteria for DCD.
The main issue has been speech. At 2.5y she doesn't have any language at all. She 'speaks' with a strange sort of 'aha, aha, aaahhh!' sort of sound (difficult to know what I'm on about unless you hear it I think!). We were initially referred for the speech and subsequently she was diagnosed with a 'severe expressive language delay'.
On further assessment, she has patchy fine and gross motor delay. She was a late-ish walker and now struggles with many tasks. Examples are feeding herself (she can't, at all), biting food (everything has to be in bite sized chunks or she just crams it all in, can't bite food), can't climb stairs, can't jump with two feet...the list goes on!
The Paediatrician says she is of above normal intelligence, problem solving at a leave of approx 3.5y.
I hope this doesn't sound like I'm focussing on what dd can't do! She's incredibly happy, loving and healthy and loves playing, listening to stories. I think she's extremely switched on, just so hard when she can't communicate anything she's thinking or feeling.

I suppose what I'd like to know is does any of this sound familiar? What sort of things have parents of children with DCD found helpful? And is this something she will always have, I know the speech will come but does anyone have any idea when this might start to improve? Will she get help at school when she eventually goes? And how might this affect her when she's older?
She's at preschool 2 mornings, they don't seem too clued up, is there anything I should be asking of them?

Thanks in anticipation :-)

Redoubtable Sun 16-Feb-14 22:13:25

I dont know anything about the speech side of things, as I dont deal with and my DC dont have that problem.

Gross and fine motor co-ordination -
the first skill that children need to master is core strength.
That is the foundation for co-ordinating upper and lower limb movements.

So: lots of playing games on her tummy, watching tv/playing on a screen while lying over a small cushion, kneeling at a low table to do games at tabletop (so she's not sitting).
Tape paper to a wall for drawing in BIG movements.
Or paint a wall with blackboard paint for the same movements.

A body sock is good for resisitive movement and giving her a good sense of her body position.
Do lots of games/races in crawling or creeping.

If it is DCD, there is lots of help and accomodation for her.

Its scary and overwhelming to get a diagnosis; my advice is to prioritise your battles (e.g. for you it might be speech, or feeding herself or using stairs) and work on that. Each skill is a battle won.

Good luck

nurseysarah1981 Mon 17-Feb-14 04:27:36

Thank you very much for the advice, really helpful,. It sounds like practice will be the key!

adrianna1 Mon 17-Feb-14 16:14:33

What is DCD?

Ahhhcantthinkofagoodname Mon 17-Feb-14 20:44:37

Hello, my son, aged 3.5, has verbal dyspraxia (plus some people have said he may have motor dyspraxia too but this is as yet undiagnosed) - so I can comment on the speech side of it! Interestingly our paed said she wouldn't diagnose dyspraxia till he was older but was happy to diagnose the verbal dyspraxia just after his 3rd bday.

Speech therapy is not surprisingly the main way of addressing the expressive Langauge delay and problems with speech production. Children with verbal dyspraxia need regular and intensive therapy and it can be a long road. Therapy also needs to be focussed on the right area, they need to be taught how to make single sounds, ie consonants and vowels, and then this is built up to simple words. Lots of therapists follow the nuffield program. If you are not getting much from the nhs, is private therapy an option? We fund our private therapy from the DLA we get for DS - your DD being non verbal and physically underdeveloped may entitle you to get something, we started getting it shortly after his 3rd bday when DS got the verbal dyspraxia and ASD diagnoses. Finally ask your DDs therapist if she can give you exercises or advice about speech work at home.

It would be beneficial for your DD to get extra support at pre school. Maybe ask to speak to their SENCO and ask if they can do an IEP. Our NHS therapist went to DS' nursery and gave the staff some materials and kind of "trained" them to do speech work with our DS. his key worker has even attended a couple of therapy sessions so she can pick up more techniques from the therapist.

It's still a while off school but you may want to start thinking about whether a speech and language unit is the right place. These are generally attached to mainstream primaries so the kids spend some time in the speech unit getting therapy and specialist support targeting speech and language development and part of their time in their "normal" mainstream class. Your speech therapist may be able to advise if your DD meets the criteria but if this is the route you want to go down make sure you kick things off earl enough, the process you have to go through with the local education authority is quite drawn out!

Finally another practical tip, some people go down the makaton route to help the child express their basic needs. Watching mr tumble on Cbeebies is a good start, it's quite easy to pick up.

nurseysarah1981 Mon 17-Feb-14 21:58:31

Thank you, that's so helpful.

Can I ask what stage your DS is currently at with speech? Has he got some words now? Does he communicate well using makaton and some speech? Just really curious to know where you're at as you're a year down the line from us!

We have the 'First' team who are an arm of our normal SALT team who visit the preschool. Our SALT and OT have recommended a referral but the preschool have to make the referral and seem to be a bit slow about doing so. We're really happy with the preschool, they're very caring but not sure how seriously they take DD's speech issues. We're going to ask for a meeting with her keyworker after half term to make a bit of a plan.

No idea re school, we live in a small village and the primary school is attached to the preschool. I hope she'll be able to go there as long as they can cater for her needs ( whatever they'll be by the time she gets to that age).

Re private care, yes it would be an option but the local CDC are being brilliant, we have to wait for SALT appts a bit longer than I'd like but that's all part of it I guess.
Hadn't even considered things like DLA, I'm sure once she's older and we're a bit further down the road it's something we'll be encouraged to consider, especially if she doesn't progress and continues to have such profound problems with self-care.

Thanks again for your help!

Ahhhcantthinkofagoodname Mon 17-Feb-14 22:23:12

Hello, yes I guess we are a year on from you: at 2.5, DS had no words at all really, maybe ma and da on occasion. Now, to give a few examples, he can say:

No
Des=yes
Beez=please
Mummy
Daddy
Dan-dar=grandma
Deddy=teddy
Dun,doo,dee= one,two,three
Deen= green or clean
Durse-dee=nursery
Ome=home
Duh=up
Den=train

he uses a few makaton signs but generally points or drags us to what he wants or gets a cup if he's thirsty etc. His verbal dysprxais has been classified as moderate to severe and he's hopefully going to be going to a school with a unit so he gets the specialist intervention he needs.

I would kick off the DLA application now, plenty of kids that young do get it and it's all help for your family. If your DD makes little progress on the speech front and you don't get as much nhs therapy as you'd like, private speech therapy might be a good option for you when your DD is a bit older. We have an amazing private therapist who's ex Nuffield. since she got involved a couple of months ago, DS has made some great progress. Just in the last week he can now say c and g, next step is to use them in words! Before that we had another private therapist who was nice but nothing like as effective, I think the specialist experience can make a real difference.

Not an option for us but in some areas you can get specialist nurseries or pre schools for children with severe speech problems.

Good luck with it all

ProfessorSkullyMental Tue 18-Feb-14 18:38:23

my ds is 7, he just got diagnosed with significant DCD two weeks ago.

while his verbal skills NOW are really good (he can talk the hind leg off a donkey and has an above average vocab and is VERY intelligent) he didnt actually speak more than a handful of words until he was 3.5 and attending nursery regularly for his 15hrs.. we were on the verge of him being referred for Speech Therapy when he suddenly started jabbering (and hasnt shut up since)

from the time he started sounding up until he started speaking, he had very very few words, he mostly made noises. He also had his own language, DH and I weren't mummy and daddy, we were nnnna and owee

he could say yes, no, mine in 'english' but had his own words for 'drink' and 'hungry' and they weren't even toddlerisms, they were COMPLETELY different words... we had to give the nursery a cheat sheet for them to understand him.

to speak to him now at 7, you wouldnt know there was ever a problem, but at 1yr-3.5yrs he was not 'normal' in speech terms.

nurseysarah1981 Tue 18-Feb-14 22:01:32

Thanks so much.

Great to hear where others are at. Very encouraging to hear about brilliant speech Professor, I think we still hold out hope that DD will just 'get it' even though SALT says more likely to be very gradual and slow progress as with Aaahcanthinkofagoodname's DD.

We've started in earnest with the makaton, DD thinks we have finally flipped out!

2boysnamedR Tue 18-Feb-14 22:14:42

My 6 yr old and baby both have dyspraxia / Dcd

It's a spectrum disorder so no one an predict how it will effect them long term. My eldest had group ot with a few other kids with Dcd. He could do things they couldn't and visa versa.

My son took years to talk, it's looking very likely that his speech will effected for life. He was word finding problems which is a severe issue for him.

Very few people know about Dcd so a good nursery who are willing to learn is key to getting the right help.

My son is being assessed for a statement now but it's been a very very hard four years getting to this point.

I recommend private salt if you can offird it to run alongside the nhs ( only as my salt severely down played my sons issues) and getting ot on the nhs. Both have been key to getting my son diagnosed and help at school.

Things do improve over time, I never thought they would but ds amazes me some days. He will never be 'normal' or cured but I am confident that with the right help he could live a normal life. Also I can now see that ds does not need to be normal. His quirks make him - him!

nurseysarah1981 Tue 18-Feb-14 22:38:23

That's such a helpful response, thanks.

I think we'll see how we get on with current SALT over next few months, DS is being reassessed by Paediatrician in September so that will allow us to see how much progress is being made. But I def wouldn't rule out a private SALT. Whatever it takes to help her, I'm noticing such a difference between her and her peers now, not only in terms of speech but her willingness to interact and her ability to perform even simple tasks.

I am anxious about preschool, the leader just days 'oh, she's fine, she'll catch up'. Not massively helpful when what she needs is lots of help. Perhaps once we've discussed it with them they'll have a bit more understanding.

Our OT told us DCD is quite unusual and even more so in girls. She also said it was a spectrum and I think only time will tell how severely she will be affected in the future.

Good luck with both your kids, will be lovely for them to have each other for support.

2boysnamedR Tue 18-Feb-14 22:59:15

Yes it's not so common in girls so well done on getting a dx.

I have had years of 'he's a boy, there all different, they all get there in there on time' etc so in hindsight I should have looked for a nursary who where more clued up on special needs as they did call in some outside help but it all feel on deaf ears. They said he ran strangely so all the clues was there.

My nhs salt were so overloaded they just wanted him off the books. I was told he had moderate problems. Imagine my shock when the private salt said he was three years delayed and in 100 children he would be that bottom 1%. You can't get worse then 1% so how do you score severely delayed I wonder?

Picking out the cause of the speech problem and working on that is a good start. I try to focus more on what ds finds hardest. Some things are just quirks and I focus less on addressing them.

Ds has started gymnastics which he is spectacularly bad at but he loves! And a theatre group which he doesn't like but does wonders for him. But he was six when he started both. I would have never thought it possible but it is. Sure he will never make the Olympics or be on stage but neither would most people

nurseysarah1981 Wed 19-Feb-14 12:13:46

Thank you! How is his speech now? Have things dramatically improved for him? And how were school, does he get extra assistance?

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