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4yo with dyspraxia- experiences please!

(6 Posts)
Willow1992 Wed 16-Jan-19 19:25:49

Hi, originally posted elsewhere but was advised to try here. smile
So, it is looking like my 4y4m DS has dyspraxia, as I am told the GP is referring him to the paed. following assessments by the health visitor team and his pre school teacher.

Basically he is fine with fine motor, on track with his speech and seemingly quite bright but he is still like a toddler with his gross motor skills. He walks like a toddler and still can't run, has never jumped, falls over a lot and can't balance on one leg for more than a second or two. He gets lots of opportunities and encouragement from us and at nursery, it has just never happened!

I am worried about him starting school in September. Even though he will be one of the oldest in the class I worry he'll stand out so much, in PE and on the play ground when the other children are running about and he can't.

Has anyone else been through this? I know it is different in different areas, but what was the diagnosis process like and how long did it take? What support did school offer? I am a teacher myself and my experience is that parents often need to push for things to happen.

Thank you in advance!

LongDivision Thu 17-Jan-19 13:00:47

Yes, sounds like DS, who has other issues (inc. verbal dyspraxia) but was very behind with gross motor skills at that age. A gymnastics class has helped (it took ages but he eventually started jumping on the trampoline), and lots of trips to the playground. Climbing equipment, slides, swings, roundabouts. DS had zero interest in most of these things but we slowly made it part of his routine. I think DS learned how to run and jump just before starting reception, or perhaps later. The funny thing is, I think it just happened when he was ready - I'm not sure what we did had much to do with it. I think it was some sort of developmental leap. Don't despair, it will come. In Reception, they don't really have PE until maybe spring term, and it's very simple. Many other children are not yet coordinated at this age, so he may not stand out at this point. Y1 the boys seem to start to develop an interest in football, which can be tricky, but you can cross that bridge when you get there. I'd also encourage swimming, as difficult as it is to learn, as later he might find it easier than team sports..

landofgiants Thu 17-Jan-19 14:07:03

My DS was referred for possible dyspraxia at a similar age (a bit younger I think, but the referral took a long time to come through) and I'm going to share what I remember of his assessments, though some of it may not be relevant to you.

Like your DS, he fell frequently, had quite an immature gait and couldn't jump or balance on one leg. However we also had behavioural concerns and he used to drool constantly and tiptoe walk a lot. He was very bright, with good speech and fine motor skills were ok(ish).

We were seen initially by a (youngish) paediatrician who spent a long time measuring him (he's always been very tall) and at the end of the appointment said something along the lines of: "he might be perfectly normal or he might have something really serious like muscular dystrophy"!! (Fortunately, I wasn't too worried because the symptoms didn't really fit!)

She rang me back a week later and said he would be referred to the Community Paediatrician and the Physio. The Physio checked to make sure his tendons weren't tight and noticed he was slightly hyper mobile. It was through her that we got the referral to see the occupational Therapist.

Next we saw the Community Paediatrician who said he was "in the normal range". She sent him for blood tests (which were awful!) and eye tests (which we had to attend more than once because he wouldn't co-operate). These were normal.

Then we saw the OT. In our area it is the OT who diagnoses dyspraxia. She was great: observed DS closely and gave me lots of suggestions for exercises and activities to help him. She doesn't formally diagnose dyspraxia until 5.5-6 or older.

He was seen again by both the CP and the normal paediatrician (different one this time) who discharged him as he was making progress. He made a lot of progress at the ages of 4 and 5, learning to jump/skip/scooter etc and while he can't keep up with many of his peers, his balance has improved a lot and the range of motor skills is quite large. When he did the dyspraxia test at 5.75 he scored as probably not dyspraxia. Of course that was good news, though I was pretty frustrated at the time. DS was great at focusing during the assessment, managing to do things (like balancing on one leg) that I didn't realise he was capable of!

landofgiants Thu 17-Jan-19 14:49:47

Anyway, I think what I have learn't from all of that was that DS is following his own development path and will develop skills when he is ready to. We have tried to encourage activity where possible: he would not engage with the exercises, but we did trips to the park, swimming etc. The OT explained to me that increasing core strength improves the ability to balance. As he has got older he has started Karate which he enjoys (DS has never seemed in full control of his limbs) and we are lucky to have found a group which is quite inclusive. When he was younger he was fortunate enough to do Riding for the Disabled which was also helpful.

At school he has fallen/been pushed a lot in the playground. Like your DS he is one of the older ones in the year, I have no idea how he would have managed if he had been August born. The good news is this has improved a lot. PE has been OK for him, SportsDay less so, but I think it depends on the school. My advice would be to go and discuss your concerns with the school SENCO, and class teacher in the summer term before he starts. It can be worth putting things in writing or email as well, so that school has a record of what's been said. Also I remember that someone from the LA came to look at him in the pre school year, and made some suggestions (pre school were very good with him), if he is in nursery/pre school, have you discussed your concerns with them? My final suggestion is to make a bullet point list of your concerns before any appointment so that you can hand it to the paediatrician, rather than having to say "DS really struggles to do xyz" in front of him, also you don't forget anything that way. Ideally take another adult to the appointment if possible.

I think I may be somewhat dyspraxic, and I remember not being able to catch a ball as a child (I just couldn't do it, no matter how much I practiced), however the skill just came to me in my mid teens. The same thing happened with running, I went from being the slowest in the class to one of the quickest, almost overnight! What I'm trying to say is that for many people, a degree of catch up is certainly possible.

Hope this helped!

artichaut27 Fri 18-Jan-19 12:06:56

My DS1 is Dyspraxic and my DS2 is hyper mobile.

DS1 was assessed last year, age 7 by a physio and an OT. He took the ABC movement test, which is designed to diagnose the physical aspect of dyspraxia. It's a series of activities testing fine motor skill and gross motor (walking on a line, wheelbarrows, balancing on a leg, catching and throwing a bean bag).

Tests are different depending on age.

The thing is that my DS1 dyspraxia was not obvious: he met all milestones at the right age, except talking where he was late (he needs SALT for lisp now).
It started to show in year 1 most as he wasn't really good at PE, and his handwriting didn't improve. He also took longer to learn how to read but when he did, he became one of top readers in this class.

The Dyspraxia Foundation said to me on the phone that cognitively it takes longer for the penny to drop for Dyspraxic kids.

As for PE and football, my DS1 is really not that interested. He's rather draw, read, and build Lego or Mecano. He's very actively physically as we live in Devon and he has tons of chances to walk, climb, run etc. But structured sports or competitiveness don't really interest him and I don't he feels like he's missing out on something.

My DS2 walked at 15 months, didn't jump until he was 3 y/o. He stumbles and falls regularly, and he's a messy eater but he's not dyspraxic. I had him assessed by physio in November and he's hyper mobile.

I've bought a big exercise ball for both. It was recommended by physio. It helps strengthening their core.

HexagonalBattenburg Tue 22-Jan-19 10:27:07

DD2 is 5, nearly 6 now. Started pushing for a diagnosis fairly soon after our first parents evening when she started school (so early October) and had a lot of issues with the GP behaving appallingly and refusing to refer - but we did eventually get taken seriously - referred on to paediatrician and then on to occupational therapy for assessment and back to the paediatrician for diagnosis... diagnosis came through start of September - so took nearly a year to work through the full system for it. Had a course of occupational therapy which was very useful - but they're shit at returning reports and our SENCO has just blown her top with them completely chasing recommendations up... course of speech therapy which was appalling (DD2 has verbal dyspraxia as well and quite disorganised speech) and then they pulled that early - so we've had to go down the private route with that (bank of nanna and grandad style).

I did a lot of pushing things along, had a spreadsheet of when I was expecting to hear back from different departments and I would chase mercilessly. I also used the line "I am an experienced teacher and this is NOT behaviour I would be expecting to see as normal in a child of this age" several times when getting the verbal headpats and talking down to that certain professionals like to throw at parents to dismiss their concerns - I think we'd still be awaiting diagnosis if I hadn't checked referrals had been done, chased up paperwork and made sure several times that we hadn't been lost in the system (because they are buggers for doing that particular stunt).

As for school - Reception year was OK... problems with cliquey girls in the class but not to the point it was bothering DD2 and there were a few problems earlier on with her unintelligible speech (it was about 25% intelligible to a stranger when she started school... fully intelligible by the end of that year which is amazing progress) and lack of any concept of personal space meaning kids were a little bit wary of her - but she's such a resilient little thing and just got on with stuff and gradually worked her way in socially within the class. Class teacher was bloody amazing and would do things like make sure the kids saw her knock things occasionally just to normalize it among the class (class teacher actually really reminds me of an adult version of DD2 to be honest).

Year 1's been shit if I'm honest - social problems with the girls got worse until the ringleader shifted schools recently and it's been like the floodgates of friendship have opened (I rejoiced when this child left - not the child, who was actually lovely, but the mother who did not want her kid associating with anything other than the handpicked group of kids who made the grade with her). We have massive problems with the class teacher - to the extent the SENCO is now having fortnightly meetings with me to make clear to the class teacher that she IS being checked up on and that it's going to be a heck of a lot easier for all concerned once she gets her head around the fact that DD2 is going to be using her writing slope and pencils she can hold and the like - get over it. Can't fault the school at large - just this one bloody teacher - thankfully a student is taking the class most of the time at the moment and is actually very on the ball (SENCO's had suspicions about this class teacher for a while but I was the stroppy parent who nailed colours to the mast and blew the whistle that she was stopping children have fiddle toys they needed and writing aids and the like - and reinstated SEN provision for the entire class as a result).

Academically - from initially being told she wouldn't meet any age related expectations at the start of reception year (I did warn the class teacher she's deceptively dippy but not dippy) - she met all bar the physical development early learning goals (and that one I know the class teacher intentionally recorded very harshly as we were going through the diagnosis process and she wanted to make clear there WAS a problem), this year she's reading at greater depth, her maths is solid when she's reminded to work systematically at it (she's got a very good understanding of numbers and how not to be swindled out of haribo) and her writing is... well she's on target to meet expectations - but she struggles with both remembering the motor movements of letter formation and the spatial awareness of locating words on the page - so you get letters colliding and going up the edge of the paper and the like... but she's very good at using her phonics and can produce writing well on the computer - goes back to the class teacher not being on board with letting her do this much though (although I think I'm winning - she came home saying she'd done her writing on the computer last week and I almost died of shock).

I basically went to school with the line of "look you guys know I'm a teacher and I'm trying to make this as easy as possible for you" - I provided things like her handwriting slope and pencils she finds easier to hold (we like the Faber Castell chunky grip ones) and fiddle toys least likely to drive teachers barmy. She has a weighted lap pad as well for sitting on the carpet as she's a terrible fidget.

She does karate, she does dancing (we had to switch dance school as the one we were originally at is very... focused... but found a lovely lady who now just teaches for the joy of teaching dance to kids and researched DD2's difficulties and adapted her teaching delivery to help support her), she loves climbing (if you have a clip n' climb near you they are fantastic and the core strength workout it gives DD2 is brilliant - she could fall over a floor but can go up vertical surfaces like Spiderman), she does swimming lessons which she struggles with but enjoys.

I do things to help her be more independent though - like lists of what she needs as she struggles to organise her belongings, and with things like zips I tend to just tack the spare flap of fabric back out of the way so it's not getting stuck, and I have name tapes that say which side of clothes is "back" so she can stand a chance of getting her pants on the right way around sometimes. Shoes - she has lace up brogue type shoes just as she is so hard on shoes with how much she stumbles - and I've put the elastic no tie type laces in them - and everything possible is name labelled to within an inch of its life as the organisation and sequencing aspect of dyspraxia is really really strong in DD2 bless her heart! I also spend a fair amount of time in the school lost property box.

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