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Writing hypermobile finger splints

(88 Posts)
zzzzz Sun 30-Dec-12 11:45:06

Ds has hypermobile middle knuckle joints in each of his fingers and probably very loose connection across the knuckle joints. They cause him a lot of pain and he finds writing difficult. If I support his hand he writes surprisingly well. Soft pens and slippery surfaces help too.

I wonder if any of you have tried splints or supports. I was thinking something like this

I'm worried about the level of pain he experiences and if damage is being caused long term. I would also love him to be able to write unaided, not least because it looks lik I am doing the writing IYKWIM and he definitely is!

porridgelover Sun 30-Dec-12 13:10:48

zzzzz How old is DS and what is his diagnosis?
AFAIK finger splints such as those are most commonly used for Rheumatoid Arthritis.

Using some form of splinting wouldn't be the usual first step in helping a child with hypermobility.....things like increasing the girth of the writing pen (like this ), using a writing slope, reducing the amount demanded by school, using a typewriter instead.
Have you tried any of those?

CatchingMockingbirds Sun 30-Dec-12 13:14:44

I use a wrist splint for writing and typing. It is hard to use at first and you need to get used to it but it helps a lot with pain in my hand. I was given mine by the hospital.

CatchingMockingbirds Sun 30-Dec-12 13:15:34

With DS I use big pencil grippers at the moment which seem to be working.

zzzzz Sun 30-Dec-12 13:40:23

porridge he has other sn but no formal dx yet, he has a severe language disorder but high IQ.

We have used larger pencils, whiteboards slopes etc. ds is HE and I want to facilitate his writing, not look for an alternative (he uses other methods of producing text routinely). He is 7.

I am aware finger splints are not the normal route, but wonder if anyone has used them. The other thing that looks promising cups the lower half of the hand in hard plastic. I think this might work as he could pivot on it to write.

Most of the pain seems to be in his little finger. His control is very good with support.

Ds's education is tailored entirely to him. He is unlikely ever to be able to write for long, but I would like him to be able too, if possible independently.

PolterGoose Sun 30-Dec-12 13:49:33

Hi zzzzz, my ds has very hypermobile fingers too, our OT did a session just testing out a huge range of aids for writing, and actually found that noodle doodles were best for him. They are just soft tubes which make the pen less slippery and softer. The difficulty with writing with hypermobile fingers is the tendency to grip the pen rigidly to compensate for the lax joints, which then causes strain. Using a soft rather than hard grip can be better. Also don't worry about how he holds the pen, let him find his own hold which is comfortable for him (although actually I can't imagine you forcing anything grin)

porridgelover Sun 30-Dec-12 13:57:31

OK at 7 I would expect that yes, you would continue to work on handwriting.

In handwriting, the hypothenar eminence, at the base of the little finger provides most of the stability to the hand. This allows the rest of the hand to be mobile for handwriting.
Pain there would suggest 2 things to me 1) that he is pressing hard to get more stability (which is not there due to the hypermobility) and 2) to wonder how stable the rest of his upper limb is.
When he is writing, can you have a look at his posture? Does he find it easier to write sitting or standing? Does he wrap his legs around his chair legs, is he 'falling' onto the table surface?
Sorry, lots of questions, but in handwriting, it's rarely a question of just looking at the hand in isolation.

zzzzz Sun 30-Dec-12 14:54:17

polter grin (you are beginning to know me far too well) yes soft tubes are helpful and I must try a bit harder with them. The young man in question is quite writing adverse but I have identified a chink in his armour and intend to take full advantage of his oversight. grin. Those tubes look good. I will buy some.

porridge. Oooh how technical. Fair warning I am pretty shameless in milking experts for useful strategies.

1) he doesn't press at all really. His hands are soft and have very little strength unless he is tantruming. He won't rest on the page at all, but will rest in the cup of my hand (warm and soft?) and this also helps with hieght/ finger placement. He finds making hard marks type pressure almost impossible.

2) posture is not something we are going to be able to address directly with any ease or hope of success. Best writing is done in my lap at table with hand round hand help. Historically he has written well standing on a chair at the white board (slippery pen/surface, larger scale, focus of standing on chair so less fidget, fatter pen, desirable activity/performance).

He couldn't wrap a leg round like that, or at least I have never seen him behave like that. He sits up straight from choice but too far back from the table.

He would hold in a fist if left to his own devices and use the pen like a wand. He holds things all the time (small toys lego etc). I believe this is because it stops his hands brushing against things and hurting.

porridgelover Sun 30-Dec-12 15:16:47


He writes best on a vertical surface (whiteboard)?
He holds things in a fist? (see here)
Both of these would suggest that developmentally he is not ready for tabletop writing. Now, I realise that in age terms, he needs to be learning letter formation and possibly DS is ready intellectually for that but in motor terms, this suggests not.
I would suggest taping paper to a wall and encouraging writing while standing (for some of his work). I would work on writing in LARGE letters to encourage use of his shoulder girdle while also encouraging correct letter formation and 'encoding' motor patterns around letters.

Some of the other stuff you have mentioned would suggest that he may have difficulty with sensory processing esp in his hand (not uncommon with hypermobility).
Is he ok with messy play e.g. smearing shaving foam on a table and doing 'writing' in the foam?
Would he be ok with playing pat-a-cakes? walking as a wheelbarrow? did he crawl?

zzzzz Sun 30-Dec-12 15:26:26

He knows all the letter formation. He can read and write. He likes messy play. His problem is not the feel of the table on his hand, more the strength needed to maintain the position and his bottom finger being squished out of place (bones are quite fluid in flesh).

porridgelover Sun 30-Dec-12 15:36:05

From what you've said here, then I would work on hand strength.
Do you have OT locally?
Sounds as if he needs lots of weight bearing through his hands (promotes strength, increases muscle tone, helps integrate sensory information).
Then work on the intrinsic muscles of the hand ....see here, here and here.

If he has hypermobility in his hands, I presume he has it through his body. So any activities that increase whole body strength, in particular core strength will also help e.g. swimming, horse-riding.

Ineedmorepatience Sun 30-Dec-12 16:02:06

Hi porrige, I was interested to read what you said about wrapping legs around the chair. Dd3 does this and she lies across the table. She rarely uses both hands as she is usually leaning on one.

We have been doing the exercises set by the OT ' s for ages and she had 3 months of phsio but we dont really seem to have seen any improvement.

Do you have any advice?

Sorry for the hijack zzzzz

zzzzz Sun 30-Dec-12 16:07:52

Those links look brilliant. Thank you, lots of fodder for strengthening. Have added them to the ever growing list of things to research and do. I honestly don't know how we ever had time for school. grin

I'm not sure how many joints are effected and these issues are perceived to be very minor by professionals in the grand scheme of things. They do impac his quality of life though and also hold him back academically. I am very flexible myself so it is probably an unwanted gift from me. We playdough daily and will be able to think about swimming again soon.

When you say weight bearing with hands does it matter if it is pushing (eg handstand, pushing trolley) or pulling (eg carry weight, dragging), I'm a bit worried about introducing things like that and going too far. Ds is not always able to tell me very accurately about pain.

Ineedmorepatience Sun 30-Dec-12 17:46:33

One of our OT exercises is called person push and it is exactly that, we stand facing each other with our hands palm to palm and Dd3 tries to push me backwards, I have to watch that she doesnt lock her elbows though as she has a tendency to twist the joints.

She also does tug of war with a teatowel and one where she rolls the gym ball up and down the wall. I think these are meant for shoulder stability but I think they work her hands too.

Dd3 is hypermobile in all her joints and as I said she has been seen by OT and physio.

Has your Ds never had an OT assessment zzzzz, if he hasnt it might be worth getting him on a list somewhere.

I agree that it isnt a minor thing, it affects Dd3 everyday.

PolterGoose Sun 30-Dec-12 17:46:39

zzzzz, does ds draw? My ds's writing skills didn't really develop until he'd become more proficient at drawing IYSWIM? With hindsight I'd say he needed the space to freestyle before he could develop any technique if that makes sense. We used to play a lot of drawing games and one was a letter monster game, so we would take turns to draw a letter and the other one would turn it into a monster, again, you probably do stuff like the anyway!

PolterGoose Sun 30-Dec-12 17:48:43

Ineed, 3 months isn't long, do give it more time. Ds took ages to get the hang of writing and then it just happened.

porridgelover Sun 30-Dec-12 18:17:17 pushing and pulling activities..both are good. The thing with hypermobility is that the proprioceptive receptors in the joints are not receiving sufficient 'strength' of information during movement (we think...thats why for instance, if you have sprained your ankle, the proprioceptors can be 're-set' to think that the extra degree of mobility is now 'normal' and you are more likely to sprain again).
It is important to grade the movement and monitor. If you are having fun, your brain is switched 'on' to learn. So, it's balancing the safety vs the learning/benefit. Activities where he 'grades' himself are the best way to go. So for instance, you might get him to hold a plank position for 5 seconds today and tomorrow he aims for 6. Then he's pacing himself, but improving IYSWIM.

I dont know your son's medical history (and this isnt the place) but you say his hypermobility is minor in the scheme of things. So core strength is probably the place to focus for most benefit.

porridgelover Sun 30-Dec-12 18:25:53

Iineedmorepatience the posture you describe is typical of a child seeking more support during writing.
What have your PT and OT said re core strength and endurance?
Time and again (totally outing myself here) I get children referred to me with handwriting problems. And I point out that handwriting is at the top of a 'pyramid' of skills. Its very high level fine motor, visual, perceptual all rolled together. If you have problems in any one of those areas, its going to become evident around 6-7 years as the child is expected to produce fluent handwriting.

So, the initial assessment should be looking not only at the handwriting but also the child's sensory processing, gross and fine motor development, perception, visual-motor integration.

How is your DD at skills like bike-riding, skipping, holding postures e.g. stork. (sorrry about the links but I am doing a quick google so you know what I am talking about).

porridgelover Sun 30-Dec-12 18:35:47

ooops needed to read the thread before posting, Ineedmorepatience.

If they are already working on muscle strength and joint stability, perhaps DD would benefit from some postural support while writing. That would be a more supportive chair, a tilted writing surface, modified writing implements.

I would also recommend Therapeutic Listening for core strength <ducks> <runs away>

LadyMaryChristmas Sun 30-Dec-12 18:41:50

Have you tried testing out different pens to try to find one which causes the least amount of pain? Gel pens are better than pencils/biro's as they only require the lightest touch to make a mark on the paper. I don't think finger splints are the best way to go, it's a lot like sticking a plaster on a bleeding wound. It's still going to bleed, you're just controlling it for a little while. We found pilates a great help. smile

sazale Sun 30-Dec-12 18:47:52

My DS 5 (6 in feb) has extreme hypermobility in his hands and writing is so difficult for him. The OT discharged him without a thorough assessment after declaring the hypermobility in his hands was the most extreme she'd seen in 15 years! Barely any advice for school etc, said will beed to switch to IT support asap and that its up to school to deliver any intervention, so really not happy. The physio hadn't done an assessment either as I didn't have concerns over his gross motor skills (the OT and physio saw him as part of a multi disciplinary assessment at the CDC)!

I've now gone out of area to the rheumatology dept at a children's hospital and I'm hoping that the physio/OT there will be more supportive.

This noodle doodle pen grips look perfect for him as he has a strange pen grip but the OT said not to correct it as he holds it like that to stop his thumb joint popping out!

A very interesting thread.

LadyMaryChristmas Sun 30-Dec-12 18:52:46

Ds saw an NHS physio once. She fell off her horse, the next appointment was cancelled and I didn't hear from them again. By the time I called to see what was going on they had discharged him (without telling or contacting me). The orthopedic doctor's plan of solving ds's ankle pain was surgery to break and reset ds's femurs (thank god that the gait assessment proved he didn't need this). Provision for patients with hypermobility syndrome within the NHS is a joke (as is the DWP's DLA form but I fear I'm starting to rant now).

zzzzz Sun 30-Dec-12 19:00:04

It can be difficult to understand ds as he is all out of sinc with the norm.

He can write, but it hurts him to write so he doesn't like it. He wouldn't draw for pleasure in the same way you wouldn't use your hand if it was injured. He can pedal a bike with stabilisers, is graceful on a trampoline and can balance, catch a ball. I would say his gross motor skills are good.

We have similar problems with cutlery. His preference is for plastic handles, light cutlery, and fatter handles. He can't use a knife, but is working on it.

I am extremely sneaky by nature grin and can given time and space can get him to do most things. But he would not tell me if something hurt, or rather it would be impossible to tell how much it hurt. Given his hands are so floppy and sore, I am concerned about doing more damage than good.

He is on the list for OT (over a year) but how much they can help (and when we will get to see them) will be very dependant on how they perceive him. It's been my perception that most people think its not worth worrying about for him because he appears so do lally.

I have rather different expectations which is why he was able to write a note asking to go to the aquarium yesterday. <fails totally to hide shameless smuggery>

Ineedmorepatience Sun 30-Dec-12 19:02:04

Thanks, porrige, Dd3 uses a stabilo pen/pencil at school but not a writing slope.

We have been doing the exersises on and off for 2 yrs now but we are having a real push on them at the moment since she was ill and spent 2 weeks lying on the sofa.

She really struggles with the exercises, hates doing them and often just lies on the floor wailing.

Consequently we have made little progress, she does them once a week at school without any trouble but obviously thst is not enough.

I am working really hard atm to build it into her routine and I am going to start taking her to a trampolining class after the hols, she loves canoeing which is great for core strength and shoulder stability but it is just too cold for her atm.

Thanks for the advice and keep it coming smile

zzzzz Sun 30-Dec-12 19:03:47

Wow I type way too slowly!

zzzzz Sun 30-Dec-12 19:09:00

Best pen by far is fatty white board marker as it makes a good mark for little pressure.

Felt tips work well too.

What would be fabulous is something computer mouse sized with a wrist shaped dent to lay his hand on with fingers poking out the front. Then he could glide across the paper and write much longer. If it could be soft and warm so much the better.

PolterGoose Sun 30-Dec-12 19:29:20

If you contact the Cerebra innovation centre (thinks it is called that!) they might be able to make what you need.

Ineedmorepatience Sun 30-Dec-12 19:36:20

At my local hospital we have a specialist hypermobility physio although we have only met him a couple of times.

He checked that Dd3 had been given the correct exercises, tbh i felt that he lacked understanding of her ASD and as usual I got the blame for her slow progress and lack of cooperation.

zzzzz the waiting times for OT are horrific. We struck really lucky when Dd3 got referred because there was only one community Paed in the area at the time as the others had left/retired, this meant that hardly anyone was being referred. Great news for getting to see an OT but pretty rubbish for getting a diagnosis.

Ineedmorepatience Sun 30-Dec-12 19:44:57

Writing on the whiteboard is really good for shoulder stability zzzzz, so long as he isnt resting his elbow on his body or anything else.

It is on our very long list of exerciseshmm

PolterGoose Sun 30-Dec-12 20:21:16

I think we were really lucky as ds's initial physio and OT were both themselves hypermobile...

porridgelover Sun 30-Dec-12 22:28:12

I'm a bit intrigued now. Do you mind if I PM?

zzzzz Sun 30-Dec-12 22:33:15

Yes please. grin

zzzzz Sun 30-Dec-12 22:35:26

PolterGoose wow what a brilliant looking place! You have given me the most brilliant idea.

porridgelover Sun 30-Dec-12 22:37:35

This might be of interest to those of you with hypermobility.

Ineedmorepatience Sun 30-Dec-12 22:56:59

Thanks porrige, Dd3 has never been seen by a rheumatologist although I am considering getting her a referral as my niece and my mum both have immune system disorders and I have read that there could be a link.

I really want her to be seen by the same proff who sees my niece so am going to ask her to talk to him next time she goes. I do worry about Dd3 because like zzzzz's Ds she doesnt interpret pain well.

She also gets really bad post viral fatigue everytime she is ill, she seems to get ill less often than the other Dd's but when she does, she gets totally wiped out. I do worry about her sad

sipper Sun 30-Dec-12 23:16:56

Can you see a cranial chiropractor (one that uses a technique called SOT) as they will look at resolving any retained infant reflexes and also neurological issues that can be related to hypermobility. I am not a cc myself so excuse my poor description but I have experience of children who have been helped with hypermob issues (for info, in case any confusion, cranial chiro is different to cranial osteo).

(Also, am trying to recall some Vitamin K and gut flora connection with hypermobility. Will post if the info comes back to me! But could google Vit K deficiency and also take probiotics as from my hazy memory i think gut flora is relevant to vit k levels which in turn are relevant to hypermob...)

zzzzz Mon 31-Dec-12 00:51:54

Sipper I don't know what half of that means! What are retained infant reflexes? What neurological issues related to hypermobility?

I don't know what chiro or osteo are.

I will google.

CatchingMockingbirds Mon 31-Dec-12 01:06:14

Aren't the neurological issues related to the lack of collagen affecting grey matter or something along those lines (I vaguely remember maybe reading a study on this)? Causing depression?

CatchingMockingbirds Mon 31-Dec-12 01:07:21

And the gut issue is related again to the lack of collagen and causes IBS?

zzzzz Mon 31-Dec-12 01:12:40

I have hypermobile hips and elbows. I think my grey matter is ok though?

Ds and I appear to have normal bowels too.

You guys are freaking me out slightly!

madwomanintheattic Mon 31-Dec-12 01:34:15

You need to start chasing the OT referral tbh.

Lycra splinting is used with some success, dd2 also found a pencil weight useful in some situations (she is extremely hypermobile and her joints sublux when she holds a pen). You can also try wrist weights, writing slope, seat wedge, more supportive seating (dd2 actually had pelvic supports and a waist belt with specialist seating).

But really, all this is pie in the sky stuff. He needs an OT assessment (preferably with a joint physio assessment so that they can look at his whole body whilst he is concentrating on the fine motor stuff). The OT will also be able to suggest specialist cutlery, different pencil grips, (or just big fat triangular pencils) and actually have a look at what he is doing.

I would honestly steer clear of trying to home help with specialist designed equipment at this stage - if he hasn't even got as far as the OT, it's unlikely that cerebra will take the project on - they like to have reports from current therapists to determine needs to be met that can't be met through traditional routes - and you have yet to explore the vast amount of kit available for kids in ds's situation. (That isn't to say that your idea is a bad one - but in practise, most kids just get permission to use an actual mouse, once the handwriting stuff gets given up on. Dd2 does most of her work electronically now - and tbh it makes more sense as this is the way they transition later in education anyway.

Dd2 has hypermobility because of her brain damage lol. Same with the retained reflexes.

But it is entirely possible to have hypermobility without a neurological cause. grin. We tried chiro. It was interesting, but not really definitive.

She isn't depressed, either. grin and has perfectly functional bowels. grin

zzzzz Mon 31-Dec-12 01:53:33

I think I will chase OT in the new year. To be honest he uses mouse, tablet, old fashioned solid alphabet etc. I was just blown away by his writing yesterday with hand over hand support. He is HE so we can do as much or as little as we like really, and I would like him to write clearly and I'd like it not to hurt.

Cerebra look interesting. What a fantastic place. I'm very interested to see what equipment there already is.

CatchingMockingbirds Mon 31-Dec-12 02:02:35

I assumed that not ever case of hypermobility was identical, but was replying to sipper's mention of gut issues. The nhs website discusses stomach problems here with hypermobility;

And here's an abstract from a study looking at hypermobility and grey matter;

zzzzz Mon 31-Dec-12 07:56:36

catching thank you for the links. Ds doesn't have the other related issues as far as I can tell. I can say his finger joints (middle knuckle of each finger) are hypermobile because I can see them, and see the associated problems. I don't see much evidence of anything more.

mymatemax Mon 31-Dec-12 10:33:21

ZZZZ I would agree that you need to chase that OT, without any shadow of a doubt DS2's wonderful OT's (sensory &motor) have had the most impact out of all the professionals he has come in to contact with.

They just see the child from a different point of view, look at the whoe child and spot things everyone else has dismissed or overlooked.

Tiny changes to seating, postural support can make such a huge difference to functional skills and fine motor stuff.

Can you tell I love our OT's grin

zzzzz Mon 31-Dec-12 14:12:35

madwoman I wasn't thinking of cerebra....I was someone else before I was sn-Mum with a mission, and I think I know someone who might help and make me something.

madwomanintheattic Mon 31-Dec-12 14:27:43

Mum, I'm not sure that it would help though, really. (I mean, in a practical context he might find it easier, but getting school to agree to non-standard routes, therapies and adaptive devices prior to any assessment might end up as more problematic - and 7 is an age where this stuff becomes more noticeable in peer context. Schools should be very used to dealing with children who are struggling fine motor wise at this age - and an externally sourced adaptive advice might be counter productive in terms of promoting development at this age - when it is very common to have writing issues.

It isn't to say he won't need adaptive equipment, and yours might be the v thing, patented and a success story alter on, but that probably school will expect a more traditional therapy route to attempt to build on residual ability, rather than potentially weaken the control further by using an adaptive mouse type affair.

I would have to be very convinced that dd2 was unable to progress due to her disability before giving up - but it is a huge tightrope walk. We've had to make so many decisions between providing support knowing that it will effectively weaken chances of normal development, or remove support, making life harder in the short term, with the hope that in the long term less support (and I mean support in a physical sense) will strengthen muscle, improve tone, and mean that she is more physically able. They aren't easy decisions. The OT was pretty convinced at four that she would be a long term keyboard user, but at 7 we were still plugging away with pencil work (completely unproductively, I might add grin).

Yy, thanks for links - am aware of many reasons for differences in muscle tone - dd2 has cerebral palsy due to brain damage, and I have two other non neuro typical immediate family members, and friends with EDS. grin I was just laughing that zzzz was concerned about hypermobility and everyone was suggesting nerve and gut issues, and even depression. grin

Was just really making the opposite point for context, which is probably more likely in statistical terms. grin

zzzzz Mon 31-Dec-12 14:39:33

I am school! In that ds is home schooled, so looking odd (grin possibley not really avoidable) and not being allowed to use it are not really a problem.

At the moment he is quite uninterested in writing, but I think making it easier and doing a lot of different things (whiteboard vert and horizontal, chalk board, felt tips, solid alphabet, typing, iPad) makes it more fun.

I just wondered if anyone else had any experience. Seems everyone is very anti splinting which in itself is interesting.

rabbitstew Mon 31-Dec-12 14:56:41

Ds1 found learning to play the piano the best thing he ever did for improving his hand strength. He went from barely being able to exert enough pressure to make a mark with anything other than a felt tip pen, unable to grip to pull up his own trousers, unable to play one note on the piano without other fingers getting in the way, unable to manipulate playdough, etc, to having pretty good handwriting, being able to write for extended periods and, of course, being able to play the piano rather well!!! Finding an activity your ds enjoys so much he is willing to work really hard at it can make all the difference and the piano has the benefit that the louder you press, the louder the note, so you can hear the musical effect of greater or lesser pressure on the keys, making it rewarding to experiment with changes in pressure and movement. You also don't need to be visually artistic to enjoy playing the piano - ds1 hated playdough and drawing because he hated what he produced from it, so finding physical activities which produced beautiful sounds rather than visual effects really worked for him.

By opting for splints now, you are possibly opting a little bit too early to give up on finding a means of improving the symptoms without extra support, which is probably why you are getting all sorts of alternative suggestions.

zzzzz Mon 31-Dec-12 15:09:30

Now piano might work. I wonder if I can find a teacher with sn experience.

porridgelover Mon 31-Dec-12 15:33:03

Piano/any musical experience is great IMO.
Lots of research to show children with musical education tend to do better at social recipricocity, long term education etc (though whether its because the music is the cause or the symptom of involved ambitious parents is not clear). (Dare I mention Therapeutic Listening again.....)

Splinting for handwriting: not a lot of research, but what I have seen tips slightly to the 'no benefit' side of the equation.

zzzzz Mon 31-Dec-12 16:00:36

Interesting to read about it from adults.

I think for ds it would be better to have something he rests on rather than is strapped on to him.

PolterGoose Mon 31-Dec-12 17:13:36

I've had some more thoughts grin

Seating and table height - my ds is hypermobile in every joint except elbows, OT was very pleased that ds still sits in his Tripp Trapp chair as it is really good for posture and gives support to his feet and legs. It is really hard to write if the table is too high, so if your ds were to sit higher he may not put so much pressure on his finger, hand and arm joints.

Using a softer more giving surface - eg an old fashioned A3+ sized blotter, they are softer than a table surface.

Using really good quality paper - I too have hypermobile joints and can only write comfortably on very smooth paper, my favourite at the moment are the Muji lined pads. Best biro type pens I've found are either the Bic ones with 4 colours, that are just a bit thicker or Zebra ball point pens which have a rubbery bit to grip. Gel pens are awful as you have to control the pressure in a way I just can't do, they hurt to write with.

Ds really likes the Berol school handwriting pens as they are quite indestructible and work with soft and firm pressure, so they cope well with the need to constantly change position and pressure because of pain.

auntevil Mon 31-Dec-12 17:18:10

DS has been doing various OT devised hand exercises for 3 years now. School are very good and give him daily sessions of 15 minutes (no statement) .
He is 10 now, and his writing is acceptable, but he cannot write for very long. He is truly ambidextrous in that he can swap hands part way through work and the teacher has no idea if he has/hasn't or which hand did what grin
My personal opinion is that if a DC can form letters well enough to write, they could fill out a form with name address etc. Using the written word to express ideas, enhance education, should not be a gruelling exercise that needs to be endured. For any piece of written work (remembering that my DS is Y5 - so more length is required) - he can choose to type. For lengthier assignments, he can use other aids. He still writes routinely each day and keeps up his OT exercises, but it's brain rather than pain I want from him.

PolterGoose Mon 31-Dec-12 17:41:19

And another one from me smile

Because of all ds's additional needs I forget about my own foibles (because of course I've neer been formally dx with anything but have spoken at length with various professionals assessing ds and taking history which makes me aware of some of my own difficulties confused)

I find writing using a clipboard helps, again, it means I can constantly adjust my position, can sit on sofa or bed, usually sitting on my legs in an awkward pins and needles provoking manner! Ds has often used a clipboard for longer pieces of writing, he often likes writing laying down on his tummy.

Obviously none of my suggestions are based on anything other than personal experience etc etc

mymatemax Mon 31-Dec-12 18:01:31

ds2 manages best with the table that sort of goes around the chair, so table is n shapes with chair that slides in to the arch IYKWIM. That way his arms are supported, he has less wriggle room & his feet are flat on the floor.
There is much less for his to worry about as his body, feet & arms are all supported so he can concentrate on his fine motor.
It also means he doesnt grip so hard so is able to tolerate holding a pen for longer

zzzzz Mon 31-Dec-12 18:02:05

Making the writing surface softer and less cold would probably help. We do a lot of other work on those silicon mats ( 2mm thick flubber) and ds likes them, so it may be that they soften things. I have old fashioned sloping kids desks (think inkwell in the corner) but am not sure what would be best for chair? Foot rest? On wheels office style?

Clip board is a good idea. We like to move around a lot so that would work. Keep all thoughts coming please, this is brilliant.

auntevil I want him not to be embarrassed (not that he ever is) filling out forms. I doubt weather anyone will write for sustained lengths of time in another decade!

polt I scrunch up like that from choice too!

zzzzz Mon 31-Dec-12 18:06:37

What I need is something a bit like this

But with a moulded dent for his hand/wrist to nestle in on wheels so he can move it.

zzzzz Mon 31-Dec-12 18:06:59
PolterGoose Mon 31-Dec-12 18:29:07
zzzzz Mon 31-Dec-12 18:42:46

No I hadn't. Young lady I owe you a coffee. grin

PolterGoose Mon 31-Dec-12 18:53:39


madwomanintheattic Tue 01-Jan-13 01:08:03

Ah, that makes it much easier, lol.

We bought dd2 her first keyboard when she was three, for fine motor stuff. grin

sazale Tue 01-Jan-13 01:14:42

I'm thinking of getting DS 5 an alpha smart to use in school and teaching him to touch type!

porridgelover Tue 01-Jan-13 09:09:40

Polter that aid looks really interesting! Thanks.

sazale this was recommended to me by an OT, though I havent got it yet (on to-do list).

sazale Tue 01-Jan-13 12:45:32

Thanks porridge, that sounds good.

I do want him to learn to write but the anxiety it causes him and the effort it takes are causing him barriers to accessing the curriculum. I'm trying to find alternate ways of him to display his knowledge as he's very intelligent. He can't communicate it verbally as he has social anxiety which manifests like selective mutism.

He can't write words/read independently yet due to his phonological processing difficulties so he's finding school very difficult indeed and I want to make it as easy as I can for him.

zzzzz Tue 01-Jan-13 13:14:10

sazale. A couple of ideas that might help.

Typing, BBC does "dance pad?" typing for free on line, which a friend swears by for her ASD/dyspraxia child. I will check the name and get back to you.

For writing I would try a Montessori solid alphabet (you can buy one or just make them on paper or tiles). Ds also loves leaping about on a big floor alphabet (nb try to find a lower case one). Start with word building, have a box with solid little toys in (eg small plastic dog, pig, hat, pin) vary materials and style if possible so collected from different sources is better. Choose a thing and then try to write the word. Take turns like a game or work alone.

I would recommend Montessori Read and Write by Lyne Lawrence as it has lots and lots of activities and games in order, so slowly adding skills.

I think you are right to persue this as the difference in people's perception of ds before and after literacy is quite marked.

From a Mummy point of view it is also another window into your little person.

sazale Tue 01-Jan-13 15:21:01

Thanks zzzzz,

I'm doing alphabet arc and some other activities with him at home as guided by an independent SALT that I ended up getting involved as school just kept fobbing me off and nhs salt was only dealing with his speech sounds and no one was looking into the impact on his literacy. The problem is he's shattered by the time he gets home from school and doesn't want to do more activities so I have to find ways of doing them without him realising.

School have promised loads but are yet to deliver and CDC won't advise on social anxiety until they've decided what's causing it! In the meantime he's really struggling and hates school. As he's a rule follower and exceptionally well behaved he'll never cause them a problem. The OT has advised Ed Psych involvement in her report but I doubt that will happen.

I'm considering applying for a SA for him but I'm aware that there aren't many kids in our LA in KS1 with one.

I have a dd 14 with HFA (and other developmental difficulties) who I was constantly told would be fine (she is academically bright) so I'm very suspicious of school. I got a statement for my dd last year and she is now in special school.

It's the fobbing off of the things they say they're doing/gonna do but then don't. He's supposed to write with a felt tip but I know they make him use a pencil. His pencil grip that was provided by OT went missing and I said I'd replace it. The SENCO insisted I didn't that they would and whilst clearing his drawer out at Christmas noticed one that is not the right one.

The SENCO didn't know he was bright until I told her! My 11 year old nt son left Y6 this year with level 5a's across the board and ds5 appears much more bright than he was at the same age but he is on p levels but school won't tell me his exact levels!

I do wonder if I'm over reacting because of DD's difficulties but she missed out on early intervention and I'll never know if things could have been so different for her. I don't want to chance it a 2nd time.

Sorry for the long post and thanks for the info, it's greatly appreciated.

zzzzz Tue 01-Jan-13 16:43:50

Im out on phone but I think you shouldnt wait for help from school.

zzzzz Tue 01-Jan-13 17:20:47

The vast majority of siblings are 5 to 10 IQ points different from each other. So if your other children are bright it is probably a good idea to assume your ds is.

I rally sympathise with the tired child who needs major input on top of the school day. It is very difficult.

Holidays are obviously a good time and weekends. Make everything as stress free as possible at home (I know you do this anyway, you aree a Mummy). The truth is that children with sn have to work ten times as hard as other children. It is like having a very gifted child. If you'd given birth to an Olympic gymnast there would be endless extra training, special diets and equipment. Same thing just none of the applause! grin

This is a good syllabus

Scroll down to "language" which is what we would call literacy.

sazale Tue 01-Jan-13 19:24:09

Thanks zzzzz,

I think I need to concentrate on 1 or 2 areas but as there is so much he needs it's hard to prioritise. It's going to have to be the reading and writing (or alternative forms of displaying his knowledge).

zzzzz Tue 01-Jan-13 19:29:52

While I am knackered most of the time, I have to admit the endless striving for more skills everyone else gains easily is not all bad. There is nothing more satisfying than when your carefully laid plans work. It is also really challengeing always having to think of another way of getting a new skill.

I will never be bored, probabley never have empty nest syndrome, and even if the rest of the world don't get it, I know these children are a gift.

sazale Tue 01-Jan-13 19:32:36

The vast majority of siblings are 5 to 10 IQ points different from each other. So if your other children are bright it is probably a good idea to assume your ds is.

I didn't know this. That's very interesting. Despite all her difficulties (ASD/SPD/Dyslexia/ demand avoidance/hypermobility/significant impairment in motor skills?ADHD traits) my dd left primary with 4b's accross the board with the school saying she could have done much better if she would just concentrate!! By the end of year 8 where she had been out of mainstream classes for 1 year and only been completing set work in the student support unit set by the teacher she had increased to a 6c in maths!!

When I mentioned that my ds was very intellegent to the SENCO she was very shocked!! They are such a secretive school it drives me mad ggrrr lol!

zzzzz Tue 01-Jan-13 20:11:18

It's one of the things I took away from Thomas Sowells book "Einstein's Syndrome" (though I find him a little too "it's not ASD-ish" to take all he says seriously). I've read it in other studies. I do think it only really can only hold true if you dc's disability doesn't result from injury, but it makes sense from my experience.

Sowell recommends having your other children's IQ tested if it is hard to test your child with sn, and then arguing statistics, with IQ doubters.

The staff at ds's old school sometimes found it hard to understand. I think they pitched a couple of years below his chronological age. The problem for ds is he is very bright so although he appears to be able to muddle along, he actually is massively disabled by his language disorder and masks it to a point, the result is he appears daft and is bored.

survivingwinter Wed 02-Jan-13 22:55:08

my dd also has hypermobility due to brain damage and just wanted to second what was said above about how supportive seating can help with fine motor. we just got a chair through OT which frees up dd s arms as her core is weak. She can't hold a pen correctly and writes with her little finger primarily. IT says in long term will cause pain in the radial nerve (sp?)

madwomanintheattic Thu 03-Jan-13 04:14:05

Dd2 (whose disability does result from injury) tests 20 points higher than Ds, and 10 points higher than dd1. Ds's FSIQ is hampered by his own disability which doesn't result from injury though... grin <oddballs>

They all have Ieps for everything. We are a very strange family. grin

sazale Thu 03-Jan-13 11:12:59

We are a very strange family too, madwoman ha ha!

The OT never went to see him in school to see if he needs any adaptations etc. They haven't even checked about his core tone etc affecting his writing, only his hands.

I've just had him referred out of area to rheumatology so fingers crossed they're OT will be better but as out of area I'm not sure they'll visit his school.

I'm considering paying for a private OT as he has some sensory issues and there is no nhs ot device anywhere near here that deals with sensory.

sazale Thu 03-Jan-13 11:13:49

Service not device lol!

survivingwinter Thu 03-Jan-13 11:30:17

that's strange sazale - core strength was the first thing our OT checked for during dd s assessment.

both my kids have an iep too but dd (with brain injury) for physical difficulties only and ds (no brain injury) for learning difficulties confused

madwomanintheattic Thu 03-Jan-13 13:48:02

Mine have five Ieps between the three of them... grin

mariammama Thu 03-Jan-13 16:39:59

Physio/OT for hands is quite specialised, but should be available on the NHS in most places. Is it worth getting advice about taping?

madwomanintheattic Fri 04-Jan-13 03:58:39

Regular paediatric OT will have more experience in hypermobility than a unit specialising in adult rehab tbh - and they are usually v experienced in issues relating to pre, emerging and improving handwriting (including running handwriting classes for kids struggling, which will include lots of exercises designed to strengthen and improve function.) taping is a short term measure during injury and initial recovery - have never seen it used as a long term aid for hypermobility (have 9 years of experience with six different paediatric ot's in three countries lol based in a mixture of specialist paediatric development centres, special schools, hospital clinics and school based...)

Would be interested if you have any child development links that recommend it though - I would have thought it would be counter- productive from a developmental pov, but possibly functional? I assume it isn't routinely used by paed ot's as they are routinely used to promote development in the first instance? (Rather than functionality! Which I know is weird, but it took 9 years before dd2 was introduced to a button holer wink)

zzzzz Fri 04-Jan-13 09:43:29

Can I ask a side hypermobile question?

Do all of you/your children experience pain in your bendy joints? Ds is very protective of his hands, but he can't tell me much detail.

I have bendy joints (but not hands) but they don't hurt at all, on the other hand I have had quite a bit of trouble with what they think might be Rheumatoid Arthritis historically. I seem to have managed to pull both my achilles tendons this week, which is focusing the mind (grrrrrr). I had a Rheumatologist before the children, but I can't really get to the Dr now, so I work on a mixture of over the counter stuff and denial (this plan may not work for much longer).

I suppose I'm worried there's more to all of this than I have been thinking. I've been distracted by dd's issues and language and endless school hassle.

PolterGoose Fri 04-Jan-13 10:36:32

Ds was complaining of leg pain at night for ages before we started the assessment process, I'd not really believed him blush but had administered Calpol just in case. When he started the OT assessments she picked up on his bendy joints and referred to physio who assessed and found him to be hypermobile everywhere except elbows. Hence the pain, I felt absolutely awful that I hadn't really believed him. He does get leg pain if he goes walking on hard ground but seems to be okay with rural walking confused Even though his hands are ridiculously bendy he doesn't get pain in them.

My 'story' is that as a child I was forever spraining my ankles and wrists, started getting really bad arm and leg pain which completely immobilised me at times. I went through months (maybe years, I have a very poor memory of my childhood) of tests, nothing ever found, it was awful, had lots of blood taken which was always problematic and agonisingly painful, now realise this is related to hypermobility I think. Eventually saw a consultant who said it was because of the way I sat, in a sort of reverse cross legged position, a bit froggy. I started sitting better and pain did reduce but I have always had frequent sprains and pains.

I've always had hand pain when writing for long, recently doing exams again and struggled. I haven't been dx hypermobile but it is obvious to me. I can sprain my own ankle by twirling it and wear support bandages frequently. I now realise that the sitting position I adopted is common in hm children because it aids the proprioceptive sense by increasing feedback, so the sitting was the result of the hm rather than causing the problems IMO. Also now know that pain tends to worsen during growth spurts (and puberty?) so that may account for mine being largely written off as growing pains. Not sure how much was recognised back in the 70s either.

I'm pretty sure it is possible to have hm joints an have no, some or lots of pain. I understand it can also affect healing, scarring and, in my case, blood taking and anaesthetic injections.

Ineedmorepatience Fri 04-Jan-13 10:45:29

Dd3 twists her joints regularly, usually when playing but recently she hurt her shoulder rolling over in bed. I thought she had dislocated it by the screaming but luckily she hadnt.

She gets pain in her hands when writing and her ankles used to twist all the time before she had orthotics.

I am about to try to get a rheumatology referral as she has never been seen and I have some concerns.

sipper Fri 04-Jan-13 21:00:12

Hi zzzzz sorry, my earlier post wasn't intended to confuse or alarm. I'll try and make more sense this time around!

I can't give advice on the devices, splints etc so am not any use on the managing of things on that front, but thought it might be useful to share some thoughts about looking at whether the prob can be resolved - and then no more managing, yay!

As chiropractic treatment deals with neurological pathways it is definitely worth trying for hypermob as it is often linked to muscle weakness.

Help improve the nervous system and the neurological connections and muscle strength and hyper mob can be affected.

You mention other areas also associated with neuro pathways (speech) so it could really be worth a go.

The most relevant chiropractor to see would be someone who practises SOT (a specific type of chiropractic technique).

If there is a global hypermob (I.e. whole body), then possible vitamin k deficiency is also worth addressing.

Hope that all makes more sense then when I first tried to explain earlier in the thread! Also hope the aids and splints etc that people have suggested are of help.

For finding the root cause and trying to improve the hypermob itself I can personally vouch for SOT chiropractic as have family member who does it and has improved things for a lot of children - handwriting ability included. Best wishes and happy 2013!

sazale Fri 04-Jan-13 22:24:56

Both DS 5 and dd 14 have pain in there joints and I know they got it from me and I have a lot of stiffness in my joints now (worse in winter) and had pain as a teen.

It's amazing how much hypermobility is linked to other issues like bowel and explains all the nighles I have and the tiredness I've felt ever since I can remember.

Apparently you can hypermobility without pain but it only becomes hypermobility syndrome when you have pain.

I think my DS 12 nt has hypermobile but he doesn't have pain (touch wood)! My sister is dx'd with HMS, my neice is about to be, my other 2 sisters are hypermobile as is my mother!

sazale Fri 04-Jan-13 22:25:39

Niggles not nighles lol

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