Dyspraxia (possibly)

[sunnyfields25]

Hi all

DS is 3.5 and for a while I've had concerns about his clumsiness. I tried to pretend I was worrying over nothing, but nursery have also recently raised concerns. He comes home most days with a new bump on his face or head. They suggested we check things out with a doctor.

I started looking into dyspraxia because DH's brother was diagnosed as a child and I thought there could be a family link. When I looked at the symptoms, I realised it's not just the clumsiness - quite a few of them actually match up to issues that DS has.

DH spoke to the GP who passed our concerns onto the health visitor. She rang me back today to discuss, and I'm feeling pretty deflated after the conversation. This HV was quite dismissive of problems DS had when he was little (unrelated to this, mainly feeding issues). I haven't needed to have any contact with her in quite some time, but unfortunately this phone call went the same way as many previous conversations when DS was a baby. She told me that in her opinion it could be dyspraxia, but a diagnosis isn't really important. She said what matters is the support that we offer DS. I suggested a diagnosis might be helpful in accessing support, especially as he gets older, but this was dismissed.

Now I completely understand we may be barking up the wrong tree entirely and DS's problems might not even be due to dyspraxia. But I really feel that knowing either way would help not only us in supporting him, but also help DS in understanding why he's behind his peers. This is likely to only get worse when he starts school next year.

We left it that the HV is going to check with an OT whether they have any involvement any more with cases like this, but she believes not. And she seemed to think there might be no way of DS having an assessment as services in this area simply don't exist. But either way, if she believes an assessment and possible diagnosis are unnecessary then I don't think she'll be very supportive in pursuing them.

What I wanted to ask, after this mammoth ramble (sorry!) is... Is a diagnosis actually important? And is it worth pushing for an assessment?

I know DS is very young still but I feel like we're failing him if we just admit defeat and don't at least get his problems checked out.

Thanks so much if you've managed to make it to the end!

Goodness, that is (in my humble opinion) dreadful advice!
My son is 7, he is dyspraxic, we got the diagnosis at a private occupational therapist and he had regular sessions. The difference to him is amazing. He no longer falls over all the time or bumps into things constantly. I mean he is still clumsy but so much better. If you didn’t know about it you wouldn’t notice anything wrong with him. He also recieves one to one sessions at school to aid with fine motor skills which he wasn’t getting prior to diagnosis. The teachers (for the main part) understand why he struggles with certain activities like handwriting which helps him at school. It also helps us understand why he may find certain things such as sitting properly in a chair or organisation difficult. In our case a diagnosis has been very helpful. Really hope you get sorted! X

My daughter has dyspraxia, we found the ot and physio so helpful. She didn't get diagnosed until in junior school but having an official diagnosis will help moving forward into high school. I would push until you get referred to an ot or paediatrician

Hi all, I know I’m late to this thread but I also suspect dyspraxia got my 5 year old. He was very late at walking , never crawled, handwriting is challenging, poor coordination- we raised it with the school who said it may be too early to get diagnosis ? I’m unsure whether to go private but maybe reading your thread it may be worthwhile. Can I ask what made you think your children had dyspraxia ? Other signs apart from clumsiness- many thanks

@Lolacherry

Hi all, I know I’m late to this thread but I also suspect dyspraxia got my 5 year old. He was very late at walking , never crawled, handwriting is challenging, poor coordination- we raised it with the school who said it may be too early to get diagnosis ? I’m unsure whether to go private but maybe reading your thread it may be worthwhile. Can I ask what made you think your children had dyspraxia ? Other signs apart from clumsiness- many thanks

Hi, we suspected our son had dyspraxia from an early age. Although he crawled and walked pretty early he was always very clumsy, used to even fall over simply standing still next to me. Still can’t walk in a straight line. His writing was a big concern and he struggled with scissors and drawing. He would also complain that his hand hurt while writing. He also never seemed as strong as his friends, eg still can’t do monkey bars, cartwheels, handstands. Can’t do forward rolls that kind of thing.

Thanks so much for the reply @Newuser82, for some reason I didn't get a notification that there had been responses on this thread and then in the chaos of having another baby I forgot to check back.

I can't quite believe I've been trying to make progress with this situation for 8 months. I just seem to be going round in circles really, and the HV is adamant that there's no provision in this area of the country for having a child assessed for dyspraxia. This seems odd to me, but given she is the gatekeeper to the help we need, and she doesn't think a diagnosis is necessary, we have no way of checking.

I am starting to wonder about a private assessment, but I don't know where to begin. Firstly I don't know if we could afford it. But I'd like to at least find out some more info. Does anyone know where to begin in looking at a private assessment for a child with suspected dyspraxia?

Many thanks!

@sunnyfields25

Thanks so much for the reply *@Newuser82*, for some reason I didn't get a notification that there had been responses on this thread and then in the chaos of having another baby I forgot to check back.

I can't quite believe I've been trying to make progress with this situation for 8 months. I just seem to be going round in circles really, and the HV is adamant that there's no provision in this area of the country for having a child assessed for dyspraxia. This seems odd to me, but given she is the gatekeeper to the help we need, and she doesn't think a diagnosis is necessary, we have no way of checking.

I am starting to wonder about a private assessment, but I don't know where to begin. Firstly I don't know if we could afford it. But I'd like to at least find out some more info. Does anyone know where to begin in looking at a private assessment for a child with suspected dyspraxia?

Many thanks!

Hey, congratulations on the new baby. So we got a private assessment done. It was done at a children’s occupational therapy centre. From recollection (I could be wrong) it cost around £400 and we got a diagnosis there and then. He then attended a few blocks of weekly sessions but we have stopped now as he made massive progress and is doing really well. I can’t really believe that there is no provision at all for assessment. We had the option of waiting for a nhs one but chose to go private as it was recommended by a friend who said how good they were. Could you google occupational therapy places in your area (nhs or otherwise) and contact them for advice? Good luck!!

Hi @sunnyfields25 really sorry to hear you're having such a difficult experience. Whilst diagnosis for DCD (dyspraxia) isn't recommended until children at at least five from memory, there are certainly things that can help to improve skills and also to improve confidence.

I've covered finding an OT in the UK on this page
www.griffinot.com/griffin-occupational-therapy/what-is-a-childrens-occupational-therapist/

And, I've written a few supports for dyspraxia here
www.griffinot.com/how-to-help-children-with-dyspraxia/

Mine was diagnosed with ASD and dyspraxia aged 10 and wasn't offered any help from the NHS for either thing. What he did have though were piano and swimming lessons and I think both these things really helped.

Thanks all for the advice. As silly as it sounds I hadn't actually googled 'child occupational therapy' and our area. When I do that, it brings up an NHS children's OT service which is only 10 mins away Which is surprising given the HV told us there were no such services around here.

The HV is actually visiting tomorrow so I'll have another go at asking if we can specifically be referred to this place, now that I know it exists. If it's still not possible then we'll have to look at a private assessment, it's just such a lot of money.

I think diagnosis is really important. She is only borderline but it means she gets extra support at school and they know she struggles to focus and she's not just naughty.

I definitely feel it's more important the older they get - she needs stuff explained to her one to one at school as she cannot follow more than a couple of instructions at a time.

Yes that's what I thought @Newnormal99, diagnosis seems really important. If a child doesn't know the reason they're struggling so much compared to their peers then that can't be great for their self-esteem. And as you say it's important in accessing support and understanding at school.

The HV has asked us to make a list of reasons why we feel DS may have dyspraxia (which I already did 8 months ago, but hey ho). And then she is hopefully going to show the list to the GP and discuss a referral. She seems pretty certain that we won't meet the threshold for being seen by a paediatrician or OT though, so I'm not sure if it'll all be a waste of time.

Definitely go for it. My c dvd sighted was only mild but we did get referred. With her she had a lot of symptoms - just quite mildly.

Insult any said you need to think as far ahead as uni - they may get extra time or support in exams for example.

I think a diagnosis is very important. It helps them understand why they find certain things difficult , it allows them to access help and support at school. Before my sons diagnosis we were constantly told about his poor handwriting. That doesn’t happen now. It also allows yourself and any other carers understand them better. For instance my sons organisational skills are dreadful, he is messy while eating and on a different topic he also has sensory processing disorder so can go a little hyper and fidgety in some situations which could lead to him getting into trouble if not fully understood. It’s certainly been worth a diagnosis for us x

My DD 19 was diagnosed with DCD at 13. (Developmental Coordination Disorder tends to be the terminology used by healthcare professionals but I find more people are familiar with the term dyspraxia).

DD was late reaching milestones such as walking (19 months) but ahead in other areas (speech and language). Similar to your DS, nursery raised concerns about DD's gross motor movements around age 3 1/2 and advised contacting our health visitor. HV did assessments in all areas of development and DD scored approx 1 year behind on gross motor skills. I was advised to take DD to local pre-school gym/movement club to try and improve her balance and coordination which I did. Re-assessment by HV age 4 a couple of months prior to starting school found that DD had improved to within the expected range for her age.

At primary school DD continued to have generally poor balance and coordination (couldn't ride a bike, no ball skills, poor special awareness etc) but excelled in other areas and thrived academically. DH and I didn't worry about the failed bike riding attempts (which generally ended in bushes!) or lack of ball skills because DD didn't seem overly bothered about them and had plenty of other interests (piano, drawing). Handwriting was always slow and difficult to read but school never mentioned that they suspected any reason for it.

Things came to a head at secondary school when the majority of teachers brought up DD's handwriting speed and legibility at year 7 parents evening and expressed concerns about exam difficulties when it came to GCSE time. I did some research online and suspected DCD so contacted the school nurse covering DD's school who did a referral to childrens' occupational therapy. OT did a Movement Battery assessment and Handwriting Speed assessment which confirmed the percentile she was on. Advice and recommendations were given on improving gross motors skills and trying different types of pens and pen grips etc. I mistakenly thought that OT would be able to give a diagnosis however I was told that I would need a referral to paediatrics for that.

I contacted our GP and she did a referral to paediatrics - already having had the assessments done by OT proved helpful and DD got the official diagnosis of DCD at the second paediatric appointment. Consultant said that the DCD was the reason behind other issues DD has (flat feet, bowel issues, squint) - all of which we had sought help for separately. In more recent times DD needed physio to strengthen lax joints - also down to the DCD.

The diagnosis proved invaluable for DD getting the adjustments and help she needed at school and without it I don't believe she would have been able to achieve the exam results she did. One of the biggest changes was that she used a laptop for all written work and also in exams (we paid for a recommended touch-typing course for her to do at home). She was also entitled to 25% extra time in exams, enlarged answer sheets for any subjects she needed to write answers for (e.g. maths) and rest breaks (her hands and arms tire easily).

DD is going to university in September and qualifies for Disabled Students Allowance because of her DCD diagnosis. She gets help with the cost of a laptop and printer along with assistive software and 1:1 study support if needed.

Apologies for the length of my post and appreciate things may have changed and routes to diagnosis may vary by area but I agree wholeheartedly with previous posters that it's important to pursue investigation/diagnosis. Good luck.

Thanks @MuddlingThroughWithoutAClue for such a detailed reply, I really appreciate it. It's sad that you had to wait such a long time for a diagnosis, although I'm really glad that your DD got the adjustments she needed at school and that it will make a difference at uni too. This is what I've been trying to tell the HV - that I think a diagnosis does matter - but I feel like I'm banging my head against a brick wall sometimes. It's interesting what you said about your DD being ahead in areas such as speech and language. My DS has a good vocabulary and sometimes comes out with words I didn't realise he even knew. The HV has noticed this and suggested it's unlikely he has dyspraxia because his speech is so good But that clearly doesn't have any bearing on whether he does or does not have it. We've made our list anyway, ready to show the HV, so I'm just hoping she takes more notice this time.

@sunnyfields25 you are welcome. If I remember correctly the HV tested DD's areas of development separately e.g. gross motor skills, fine motor skills, speech & language (but it was a long time ago).

Have you had a look at the NHS DCD info and also the Dyspraxia Foundation UK? The NHS website focuses mainly on movement and coordination problems but does mention additional difficulties someone with DCD may experience (concentration problems, poor organisation skills, friendship difficulties) while the Dyspraxia Foundation also talks about some people experiencing speech and language delay/difficulties. Perhaps that's where your HV is coming from? Speech & language definitely not delayed for DD and she was always ahead with reading too.

DCD is a neurodevelopmental condition and can coexist with other conditions. As PP have said, it's not usually diagnosed until after the age of 5 so keeping a record as you're doing seems a good plan. There's information on both the sites mentioned above about routes to diagnosis.

@sunnyfields25 form what I remember on the main list of symptoms there was no mention of speech. I believe there is a separate condition verbal dyspraxia as I have heard of a couple of people being investigated for that

My son has and has always had an amazing vocabulary 🤔. Could you bypass the health visitor and go straight to gp?

I'm feeling so worn down by this situation. We had a monumental tantrum before bed tonight because I gave DS some clean socks to put on and he couldn't do it/wouldn't try even though I was sat there offering to help him. It took 30 minutes to get him to even contemplate putting them on and in the end DH mostly did it. DS is getting increasingly frustrated with tasks like putting socks on, fastening up poppers (which he can't do), putting shoes on, eating with cutlery etc. And I'm finding it so difficult knowing how to handle these situations because without an assessment I don't know if I'm dealing with a child who's just very stubborn and is a bit too lazy to push himself, or a child who has a condition that means he actually finds it very difficult/impossible to do these things.

I've been noticing the past few days too how difficult it is to get DS to listen to me. This could just be typical 4-year-old behaviour for all I know. But it's increasingly feeling like I'm talking to him through a shut window, and he never really hears what I'm saying. He's always so distracted. I'll ask if he heard what I just said and he'll say 'yes', but then when I ask him to repeat it back to me, he can't.

Anyway, sorry for the rant.

The HV was meant to visit this week to look at our list of reasons why we think this may be dyspraxia, but she cancelled. So we're back to treading water. I want to just go directly to the GP with this list and ask if he can refer us to a paediatrician, but I don't think we'd get anywhere with the HV's approval. The GPs at our surgery tend to only pursue a particular course of action if the HV agrees with it. And at the moment she still doesn't seem to think there's any need to pursue this.

I've told DH I'd really like to explore the private route as I can't take much more of this faffing about waiting for the HV to listen to us. He's in agreement if we can't make any progress via the NHS within the next month or so.

I'm still a bit confused though as to whether we need to see a private OT, or whether they can just do an assessment but not diagnose. And whether it needs to be a paediatrician who would give a diagnosis (and if so, can that be done privately)?

I'm so sorry if these questions have already been answered. Only getting a few hours of sleep each night at the moment with 3-month-old DD so my brain is a bit frazzled!

@sunnyfields25

We were seen by paediatrician but then referred to OT for some assessment sessions and the formal diagnosis was based on that.

I find if I put pressure on my daughter it makes it worse (definitely did when she was younger)

She cannot be rushed at all it just causes her to get really upset. As she also likes her sleep it was a fine balance between getting up in time to not be rushed but let her have enough sleep. With the sock thing I think I would just have let her go without. Socks and shoes are a big sensory issue with her abs if she's feeling worries inside it usually comes out in getting upset over her socks or shoes.

Another example is breakfast - I used to ask her what she wanted but she cannot cope with an open ended choice. We ended up having set breakfasts for set days as she could not cope with choice and ended up having a meltdown every morning. We have moved away from that now and Now if she asks for breakfast but doesn't know what she wants I just leave it rather than push. In the end she will come up with something she wants me to cook or just go off and grab herself a yoghurt.

Pushing her to do something usually has the complete opposite effect!

With instructions I used to break it down to (for example) teeth face hair.

If I said can you go and brush your hair then go to bathroom and do face and teeth it's too much. She cannot follow that long a string of instructions.

I went to an adhd talk and they explained that if you then ask it in a different way it just confuses the brain even more cos it's still trying to deal with the first sentence and then you add another long one in!

Same as Newnormal my DD was diagnosed by paediatrician - if she hadn't already had the OT assessments and intervention then I'm sure she would have been referred for them first. Paediatrics were very thorough and took a detailed history of the presentation of difficulties over the years.

Perhaps you could phone the OT's (private and NHS) and ask about routes to referral and diagnosis in your area? I'm sure they could confirm if they can give official diagnosis or if you need paediatrics.

In my experience DD took a lot longer to master some skills (and some still evade her). Brushing hair, washing hair, cleaning teeth all harder for her because gripping the necessary implements and knowing what angle and how much pressure to use is harder for her. Shoes laces mastered in secondary school (when the wanted DM's). You can get elasticated laces that can be pre-tied, Holding cutlery is awkward for DD - OT suggested Caring Cutlery which helps position her hands (she still uses this at home but she uses ordinary cutlery with friends or when out). It can be frustrating for her not to be able to do things that come naturally to us - your DS may be feeling that too.

Paediatrician suggested DD pick the battles to fight and make adjustments in some areas eg she gave up trying to learn to ride a bike and instead enjoys fixed gym equipment and walking. Velcro is your friend! If prone to spilling food then wear clothes that camouflage it etc.
Some things just don't come naturally but many can be learned with a lot of practice.

Agree re sleep too - DD needed a lot of sleep up until late teens. Was told by paediatrics that a child with DCD/Dyspraxia uses a lot of energy and effort just trying to hold their body in position every day.

Forgot - yes instructions broken down for DD rather than telling her a big list which she struggles with

Thanks both for those replies, they're really helpful. That makes sense about breaking down instructions, DS does tend to glaze over if I ask him to do more than one things at a time (although at the moment even just one thing is sometimes too much!). Interesting too about sleep being such an important factor, I hadn't thought of that. I need to start paying attention to whether DS finds tasks more difficult on days when he's not slept so well the night before.

I've found a private OT based locally who can apparently do a general sensory assessment, or if you go through Dyspraxia UK she can do a specific dyspraxia assessment which includes a diagnosis. Just in the process of asking some more questions to figure out which would be the best option. This assuming we don't get anywhere via the NHS but given the HV hasn't returned our call it's not looking hopeful.

DD2 has dyspraxia. She was diagnosed at age 5, on the NHS, but her speech was severely affected so we were fairly "on it" in terms of having a good idea what was going on when it appeared to affect her general coordination, spatial awareness and motor planning. Thus our first parents evening appointment (with a very amazing teacher) consisted of a tentative "have you noticed anything with her spatial awareness?"...."yes, we think she has dyspraxia" and a very relieved looking teacher who had a bundle of referral documents and school information in my hand the following morning!

It does not HAVE to affect speech to be dyspraxia - your HV is talking shite there. It CAN affect speech - either alongside or without affecting other motor planning - poor DD2 got hit with the full whammy. While her speech clarity has improved no end (there's a hell of a lot of muscles and body bits to get in the right place in the right sequence to form human speech - look the MRIs up of it if you're ever bored - they're amazing to see) as she gets older the issues with planning, organisation and higher level language skills are becoming more and more apparent.

She still has fuck all spatial awareness and bulldozes her way through life. We try to get her to look at spaces and think if they're a "me-sized gap" before trying to barge in and generally slow down a bit - but she managed to fall over an empty floor the other day and land under the table and gave herself a black eye! We buy screen protectors for devices in bulk!

We increasingly try to over-teach her strategies to support her disorganisation - reinforcing time and time again to put an item down in a specific place, recording sets of instructions so she can play them back herself (she does this sometimes with her writing too) and making lists. As she gets older and gets toward the phone age - I think memo apps and alarms will be the key for her - at the moment she has a watch we can set reminder alarms on if she needs it.

DD has the most amazing level of determination though - she CAN ride a bike... brakes and steering may be a work in progress, but she racked up miles and miles when we went to CenterParcs recently.