Advice please re Ds (8)

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Ds is 8 and in p4. 2 years ago at his teachers request he was assessed by OT for dyspraxia - he wasn't found to have it but was found to be hypermobile and have low muscle tone and flat feet.

In p1 the teacher thought he was deaf, he wasn't, he just zoned out as he wasn't interested.

As a bit of background he was a very alert baby, rarely slept, crawled at 7m, walked at 10 and was a good, clear and early talker. He's always been shy.

Since he started school he's struggled quite a.lot and I just feel like I'm missing a trick with trying to get him to reach his potential.

If I list his 'issues' can someone help me work through them please?

*is anxious and hates being alone eg upstairs if we are downstairs or in garden.
*never had tantrums as a toddler but does now only at home but he gets very very very upset and emotional over things and it's impossible to get through to him.
*doesnt seem to be in control of his body eg he can't blow his nose or pop his ears or do anything like that.
*hates using cutlery
*holds pencil in an odd way and forms letters very strangely eg will write C by doing bottom half then going back and doing top half.
*reads ok for his age I think but it's taken a long time to get to this stage.
*spelling is way, way behind reading
*finds telling the time etc very easy
*struggles with maths
*is brilliant at football but CANNOT run normally - he sort of skips with arms and legs everywhere.
*is a total and utter perfectionist and also quite defeatist
*is very very clumsy
*doesnt seem able to remember instructions like 'go into the kitchen and get a bowl' he would get to the kitchen then forget the rest.

• is very shy is quite obsessive - he's always had phases eg it was non the builder, then toy story then star wars and now football and when he's in these stages he thinks of nothing* else

Is this all just 'normal' ? I just can't quite put my finger on why he's struggling so much.

Oh and he was a terrible fussy water when younger, almost food phobic and he despises getting sticky hands or anything.
He also sort of flaps his hands around and grabs his face when he's upset.

Sorry I keep thinking of more things

*he fidgets constantly - at nursery at story time they had to wedge him in the back so he couldn't flail around.
*he is very loud himself but lately gets upset or overwhelmed or frightened or somethjng by loud noises.

I think you need to get him reassessed for dyspraxia. If you look at the Dyspraxia Foundation website those issues would tick a lot of boxes.

My DS1 is 7 and in P3. He has a lot of similar issues and I'm currently waiting for the results of an OT assessment carried out a while ago. Tbh, I'll be very surprised if she says he's not dyspraxic. Maybe your DS would benefit from another assessment.

Thanks for the replies - I think probably getting him reassessed is a good thing to do. I have an appointment with his teacher to discuss her POV in the new term.

The fidgety thing will be related to his low tone, as well. It is just much more complicated, and hard work, to be able to sit still when you have low muscle tone. Giving a back support (for example in circle or carpet time) is invaluable. He may also benefit from a seating assessment in his class chair. Most classroom chairs are an abomination for kids completely the wrong size, legs either dangling or knees too high...

You should also look up Ehlers Danlos Syndrome (you will find lots of info about low tone) - the low tone will also be contributing to the lack of coordination etc, the issues with handling cutlery (really. It's way more complicated than you'd think if you have thumbs that sub-lux, and fingers that do their own thing, flexibility-wise). Likewise the pencil grip. Likewise the flat feet. All symptomatic of low tone.

Is the OT going to continue to work with him, or provide help with some of the issues caused by the low tone? is at this point a lot of OTs will provide fine motor exercises, or work to determine which (if any) of the pencil grips on the market would help with handwriting (or a simple pencil weight - dd found these helpful at his age) really working towards a tripod grasp, and reduce thumb-wrap.

You can look at some sensory stuff too - dd was also bothered by loud or unexpected noises. OTs can also offer advice on desensitization etc.

I would roll with the low tone dx for a bit. Quite a lot of the issues do sound low tone or tbh quite normal for 7yos... although you are obviously also thinking about ASD with the flapping and grabbing. Ds1 was extremely food phobic with lots of sensory issues, but tbh, nothing worth getting a dx for. Until he was about 7 he didn't have a hand preference, and still doesn't in some areas at 13 (he uses a straight hockey stick..). He was dx add with ASD traits at, erm, 9 or 10, and some social anxiety, but tbh it hasn't made any difference. We had identified his quirks way before that, so knew he had food issues, sensory issues etc. nothing worth diagnosing, but just awareness (because he was really very odd ) these days, he celebrates the slightly bizarre, perhaps a little too much...!

We also wondered whether dd2 (she of the low tone) had a few traits too. But tbh, it wasn't worth adding anything on, and a lot of the stuff we worried about was tied in to her primary dx, anyway.

I should also say - the early walking doesn't really tally with low tone - but there are exceptions to every rule. W sitting/ knee walking, but not generally early walking. But muscle tone is a very strange thing. Dd2's changed immeasurably in the first five years.

Thanks.

No the OT just discharged him with a pot of theraputty

Yes it's strange he walked early isn't it? He was and is very tall though so I've often wondered if it was just that he could pull himself up etc earlier?

Is ASD autism? I wasn't really thinking that tbh at all....

My son's dyspraxic and he sounds similar to your son. Therapy putty is to strengthen his hands. He also walked very early, 10 months, didn't crawl, was talking/reading very early, super language skills. Poor muscle tone in his wrists and ankles/feet, very flat feet. He has a social skills delay but didn't have enough traits for Aspergers/ASD as there's no need for routine, no obsessions etc, he just doesn't get that he has to adapt his language and tone to who he's speaking to, so he'll speak to his teachers (and me) as though we're friends in school. I think it may be wise if you ask for a referral to a community paediatrician, they can assess him for ASD.

Although he's shy he's quite socially aware - he's very polite out of the house and has always been very popular. None of his friends think he's odd! Or no more odd than most 8 year old boys! He is very good at reading peoples emotions and is very sensitive - he can and is still selfish at times and thinks the world should revolve around him but I think that's fairly normal??

Hmmmm I don't know - dh thinks just leave him be but I just know he isn't achieving as well as he could be and he really needs a confidence boost

Ds was like this at 8. Some schools and teachers don't spot the problems, it's just 'ds', if that makes sense. Kids can get away with a lot when they are young and cute, but the same behaviour at 15 raises eyebrows. At 8 ds didn't get the rules of the playground. He'd ask people to play several times because he wouldn't understand that they said 'no' because they didn't want to, so he'd ask them over and over again incase they changed their minds. Once it was explained to him it sorted the problem, but until I twigged he was constantly in trouble for 'annoying' the other children. School was rubbish, they wouldn't say what he was doing and wouldn't find out what the problem was, they'd just tell him off.

I get the need to 'leave him be', but if you can get some help for him now then life will be a heck of a lot less stressful for you and him. A diagnosis opens doors to the right support. It is possible for a child to have ASD and dyspraxia, and ASD is a spectrum disorder so a child may not necessarily have lots of traits. From what you've posted here it's worth looking into.

Thanks LadySybil I totally understand that what's cute at 8 isn't at 15 or whenever I guess that's what I'm worried about.

Ds fully 'gets' the rules of the playground etc - it's so weird he's so popular but struggles with other things. It's frustrating.

I agree help now is better and any diagnosis won't change who he is it will just give us the tools to help him.

My nephew has Aspergers, he's 9. He tries so hard to make friends and he's absolutely lovely. He can talk your ears off about Football though, he doesn't realise that other people don't share his passion. He has friends, he's so very sociable and he just wants to play. Some of his friends love football too so they don't mind him chatting too much about it, but he has recently started to have issues at school with the other children because they see him as a bit boring. There's little things that he needs help with in class too. He struggles at school because he tends to go off on a (football) tangent and he needs extra help in class to stay on topic. When he comes here he's full of beans, he's lovely. Tall, energetic and chatty (about football). My son doesn't get the playground or teen behaviour, he finds them all immature and would rather chat to his teachers (or me). What I'm trying to say, but probably not doing it really well, is that a diagnosis isn't the key thing. The key thing is that your son gets the support and help with the things that he finds difficult. A few years down the line it could be something different, but it takes so long to get a diagnosis it's better for him if the help was in place as soon as possible. If he's struggling with things now then it's better for him that he does get some help as it will make the world make a bit more sense. There will be different challenges as he gets older, he'll struggle with different things, so the right support will help you to help him too.

You should introduce your nephew to my Ds - they could talk endlessly about football! Ds is exactly like you say - he doesn't understand that I other people are NOT interested in football. Or that they are but it is not their whole life.

I totally understand your point. Thanks so much for your time.

He loves Wolverhampton Wanderers. It makes finding Christmas presents fairly easy

You're very welcome. I do hope that you get some answers and some help, it's not easy as a parent to know that something's not quite right but you don't know what < for you.

It's worth being aware that hypermobility/EDS often runs along side other issues like dyspraxia, ASD, ADHD, SPD etc so watch they look into it fully and don't just assume everything is because he is bendy. My daughter has an EDS diagnosis but was walking from 9 months so I don't think its always the case they will be late walkers. My son walked at 15/16 months so not late but he has weak muscles that fatigue easily (also EDS). I am pretty sure both my kids are somewhere on the autistic spectrum but just starting to process to see what is going on with them. My son definitely has sensory issues.

Ds has hypermobility, dyspraxia and a social communication disorder so Luggage is right. He was checked for EDS by a paediatrician who decided he didn't have it. He didn't want the blood test to double check. His sensory issues have improved, if this gives you a little hope.