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Hypermobility - ds struggling and doesn't seem to be much help available

30 replies

BeaWheesht · 23/07/2013 17:33

Ds is 6 and about to go into p3, he really struggle at school :( there may be some visual perception issues but mainly he really struggles to write at any kind of speed - his writing is neat but it take him soooo long and hurts him.

Teacher had thought dyspraxia but after seeing OT she says he has hypermobile arms, legs and hands and is flat footed.

The hypermobile arms / hands do seem to be causing him real issues but he's been discharged and the school are going to let him use 'theraputty'. OT said she's send me a sheet of exercises.

I'm just concerned because its affecting all his learning because he takes so long to do anything, gets disheartened, can't draw like his friends can etc.

I don't really know what I want anyone to say here am just venting but I so want to help him as my confident happy wee boy is slowly disappearing :( any tips or anything would be greatly appreciated.

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rabbitstew · 23/07/2013 18:41

Tonnes of physiotherapy helped my ds1 - building up core body, shoulder and arm strength helps with writing. Learning to play the piano helped even more - much better than playdough or theraputty, which he hated because it made his hands tired and he didn't produce anything attractive out of it. At least with the piano you produce a tune, so it's worth getting through the discomfort and fatigue.

PolterGoose · 23/07/2013 19:18

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BeaWheesht · 23/07/2013 19:32

Hi

He has a pencil grip at school and I bought one for home but he hates it, will look at ones linked.

I'm trying to do cutting / clay models / Hama beads etc too

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Ineedmorepatience · 23/07/2013 19:34

Dd3 has lots of issues with hypermobility and like your Ds she has be discharged from OT. I have recently asked for a rereferral as I am having difficulty understanding which of her issues are down to hypermobility and which are down to sensory issues.

She uses a stabilo pen but really struggles to write large amounts, I am thinking about trying something else.

There is great list of excersises for fine motor skills on here somewhere that was compliled by Mrz who is an early years senco (I think).

I have it saved on the laptop and will try to find it for you later if no one else does.Smile

BeaWheesht · 23/07/2013 19:41

Thanks that'd be brilliant

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MadameDefarge · 23/07/2013 19:48

I am a bit concerned that the OT dismissed your and the teachers concerns of dyspraxis. Hypermobiity is one of the many conditions that can be caused by dyspraxia. DS was similarly diagnosed. Given a pencil grip and some exercises. gee thanks! I would fight a bit harder to go over the OTs head. I went via my gp and got a full assessment (but I had gone private to get a proper diagnosis, which I waved around to get the gp referral). he should get a proper neurological assessment by a paed and other tests. Might be worth asking your gp to get a referal to the Nuffield also.

there are lots and lots of options rather than just a pencil grip.

PolterGoose · 23/07/2013 20:13

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BeaWheesht · 23/07/2013 20:17

He had pretty extensive time with the OT to be fair - around 2.5 hours. He's always been hypermobile IMO this is just the first time someone confirmed it, I have had him at docs numerous times as a toddler due to floppy clicky joints.

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PolterGoose · 23/07/2013 20:21

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Ineedmorepatience · 23/07/2013 20:25

Thats what happened to us too bea I had been corncered about Dd3 falling and being so floppy but was just looked at like a mad woman!

Dd3 was eventually diagnosed as hypermobile in all her joints by OT's and a physio. She is borderline for dyspraxia and has Asd. I will go on the laptop in a minute and find you that list.

MadameDefarge · 23/07/2013 20:30

ds is both hypermobile and hypertonic, as a result of dyspraxia. As the consultant neurophysiotherapist informed me. Maybe she got it wrong though.

I'm just saying don't dismiss the possibility of an overarching condition. DS is hypermobile, but its not just that. The OT was right, just might not have a bigger view of it.

Ineedmorepatience · 23/07/2013 20:38

I cant find my list so have put a call out on the primary thread, someone over there will have it even if Mrz is too exhausted to respond Grin

BeaWheesht · 23/07/2013 20:44

Thanks guys, will look out for that thread. It's all so frustrating!

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Ineedmorepatience · 23/07/2013 20:50

There you go a poster named coppertop found it, I knew someone would Grin
Primary
Fine Motor Skills
Things to remember:
Upright working surfaces promote fine motor skills. Examples of these are: vertical
chalkboards; easels for painting; flannel boards; lite bright; magnet boards (or
fridge); windows and mirrors; white boards, etc. Children can also make sticker
pictures; do rubber ink-stamping; use reuseable stickers to make pictures; complete
puzzles with thick knobs; use magna-doodle and etch-a-sketch as well. The benefits
for these include: having the child's wrist positioned to develop good thumb
movements; they help develop good fine motor muscles; the child is using the arm
and shoulder muscles.
Fine Motor Activities
Moulding and rolling play dough into balls - using the palms of the
hands facing each other and with fingers curled slightly towards the palm.
Rolling play dough into tiny balls (peas) using only the finger tips.
Using pegs or toothpicks to make designs in play dough.
Cutting play dough with a plastic knife or with a pizza wheel by holding
the implement in a diagonal volar grasp.
Tearing newspaper into strips and then crumpling them into balls. Use
to stuff scarecrow or other art creation.
Scrunching up 1 sheet of newspaper in one hand. This is a super
strength builder.
Using a plant sprayer to spray plants, (indoors, outdoors) to spray snow
(mix food colouring with water so that the snow can be painted), or melt
"monsters". (Draw monster pictures with markers and the colours will run
when sprayed.)
Primary
Picking up objects using large tweezers such as those found in the
"Bedbugs" game. This can be adapted by picking up Cheerios, small cubes,
small marshmallows, pennies, etc., in counting games.
Shaking dice by cupping the hands together, forming an empty air space
between the palms.
Using small-sized screwdrivers like those found in an erector set.
Lacing and sewing activities such as stringing beads, Cheerios,
macaroni, etc.
Using eye droppers to "pick up" coloured water for colour mixing or
to make artistic designs on paper.
Rolling small balls out of tissue paper, then gluing the balls onto
construction paper to form pictures or designs.
Turning over cards, coins, checkers, or buttons, without bringing them to
the edge of the table.
Making pictures using stickers or self-sticking paper reinforcements.
Playing games with the "puppet fingers" -the thumb, index, and middle
fingers. At circle time have each child's puppet fingers tell about what
happened over the weekend, or use them in songs and finger plays.
Place a variety of forms (eg. blocks, felt, paper, string, yarn, cereal,
cotton) on outlines
Match shapes, colour, or pictures to a page and paste them within the
outlines
Primary
Self-Care Skills
Buttoning
Lacing
Tying
Fastening Snaps
Zipping
Carrying
Using a screwdriver
Locking and unlocking a door
Winding a clock
Opening and closing jars
Rolling out dough or other simple cooking activities
Washing plastic dishes
Primary
Sweeping the floor
Dressing
Scissor Activities
When scissors are held correctly, and when they fit a child's hand well, cutting
activities will exercise the very same muscles which are needed to manipulate a pencil
in a mature tripod grasp. The correct scissor position is with the thumb and middle
finger in the handles of the scissors, the index finger on the outside of the handle to
stabilize, with fingers four and five curled into the palm.
Cutting junk mail, particularly the kind of paper used in magazine
subscription cards.
Making fringe on the edge of a piece of construction paper.
Cutting play dough or clay with scissors.
Cutting straws or shredded paper.
Cutting
Use a thick black line to guide cutting the following:
A fringe from a piece of paper
Cut off corners of a piece of paper
Cut along curved lines
Cut lines with a variety of angles
Primary
Cut figures with curves and angles
Sensory Activities
The following activities ought to be done frequently to increase postural muscle
strength and endurance. These activities also strengthen the child's awareness of
his/her hands.
Wheelbarrow walking, crab walking
Clapping games (loud/quiet, on knees together, etc.)
Catching (clapping) bubbles between hands
Pulling off pieces of thera-putty with individual fingers and thumb
Drawing in a tactile medium such as wet sand, salt, rice, or "goop".
Make "goop" by adding water to cornstarch until you have a mixture similar
in consistency to toothpaste. The "drag" of this mixture provides feedback to
the muscle and joint receptors, thus facilitating visual motor control.
Picking out small objects like pegs, beads, coins, etc., from a tray of salt,
sand, rice, or putty. Try it with eyes closed too. This helps develop sensory
awareness in the hands.
Midline Crossing
Establishment of hand dominance is still developing at this point. The following
activities will facilitate midline crossing:
Encourage reaching across the body for materials with each hand. It
may be necessary to engage the other hand in an activity to prevent
switching hands at midline.
Primary
Refrain specifically from discouraging a child from using the left hand
for any activity. Allow for the natural development of hand dominance by
presenting activities at midline, and allowing the child to choose freely.
Start making the child aware of the left and right sides of his body
through spontaneous comments like, "kick the ball with your right leg." Play
imitation posture games like "Simon Says" with across the body movements.
When painting at easel, encourage the child to paint a continuous line
across the entire paper- also from diagonal to diagonal.

rabbitstew · 23/07/2013 22:39

Dyspraxia does not cause hypermobility or hypotonia. Dyspraxia can be associated with hypermobility and hypotonia, though. You can have dyspraxia without the other two, hypermobility without the other two, or hypotonia without the other two, although since hypotonia is a slowness of the muscles to respond to a stretch, it is normally associated with some degree of hypermobility... Hypotonia and hypermobility can also be associated with autistic spectrum disorders (although some people these days count dyspraxia as being on the autistic spectrum...). Basically, dyspraxia, hypotonia and hypermobility are three different things often found together and also often found separately... Now put that in your pipe and smoke it...

PolterGoose · 23/07/2013 22:47

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itsnothingoriginal · 23/07/2013 22:51

Ask OT and school about a laptop asap. It will take a long time to organise so if your DS does end up needing one, the sooner the better. Also you can get him onto touch typing so that typing skills develop alongside writing.

DD is the same age and has both hypotonia and hypermobility. She has a supportive chair for fine motor tasks at school which helps - but there are also cushions and pads available especially if the hypermobility affects core strength in your DS. It would just create a supportive base so your DS can concentrate on his hands.

BeaWheesht · 23/07/2013 23:37

A lot to digest. Will read through tomorrow. Thanks so much

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IShallWearMidnight · 24/07/2013 10:33

something which DD1s physio explained to her is that with hypermobility, you very often can't tell that you're in pain till you're really in pain. So gripping a pencil too tightly for too long, or sitting in an awkward position, causes problems long before you notice it. Whereas a non-bendy person will realise and change grip/position much sooner.

PolterGoose · 24/07/2013 10:44

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rabbitstew · 24/07/2013 11:36

Apparently, fingers don't have any muscles... to "strengthen" your fingers, you are actually strengthening muscles in your palm and arm. Another interesting thing to note: my ds1 used to find it painful flipping his hand round to go palm up, eg to do up a watch strap: this was because, being so loose jointed, he was virtually dislocating his shoulder when he did it. Physiotherapists can be really helpful with hypermobility, because they know how everything is connected together, whereas those who don't understand begin to wonder whether their child is just hypersensitive to normal movement! Fact is, extremely hypermobile people don't actually move normally without being trained in what "normal" movement feels like and building up the appropriate muscles to actually move in that way. Without that help, the tendency is to move inappropriately, causing some muscles to become weak and unsupportive and others to be over-strained, leading to increased risk of damage to ligaments, tendons, muscles and joints in the long term.

BeaWheesht · 24/07/2013 12:20

Thanks

Interesting re the anaesthesia point I have had problems my entire life with anaesthetics being useless

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Ineedmorepatience · 24/07/2013 12:39

rabbitstew, that is really usefull info, thanks. We are awaiting an assessment for Dd3 I have emailed the OT's to try to explain that I feel that we need to know how many of her problems are caused by her hypermobility and how many by sensory issues.

We have real problems with exercising due to her Asd but she loves kayaking which is great for her shouldre stability and we try to build her exercises into daily tasks wherever possible.

LadyMaryQuiteContrary · 24/07/2013 12:42

Ds has all of this but he also has sensory issues so finds activities painful which wouldn't usually be painful for anyone else IYSWIM. May be helpful if you looked into this too? (sensory processing disorder) He has hypotonia in his feet and wrists, shoe insoles really help but they have to be shock absorbing ones. The physio here is crap and he's on the waiting list for OT support. Sad

rabbitstew · 24/07/2013 13:33

Ds1 seems to have a very poor understanding generally of how his body fits together. He needed to be taught how to roll over, how to get from lying to sitting, how to pull to stand, how to crawl, how to climb stairs, how to walk, etc, etc... All I can say is that the stronger we have got his muscles, the less hypersensitive he has become. I was also interested, when we tried a bit of retained reflexes therapy for a while, that there was very little difference between the exercises we were given for that and the strengthening exercises given to us by the physio....

It might also be worth asking yourself, if your child has poor stamina, whether they actually breathe efficiently. My ds seems to have a poor awareness of EVERY muscle in his body - even his diaphragm. Learning to play a wind instrument has really helped with his breath control and thus improved his swimming and ability to keep going that bit longer before he gets fatigued. It's almost as though he doesn't know the relevant muscles are there until they have been moved for him.

Ds does also have accompanying visual-motor issues, but really weird ones - his handwriting is neat, he never confused left and right even as a very young child, or got confused about concepts like over and under, could read and write incredibly early, and tell the time on a clock without any problem. However, he can't seem to deal very well with things in 3D, or representations of things in 3D, and is not good at switching from the details to the big picture, so for a child as obviously intelligent as he is, it used to be quite frustrating when he would randomly pick up jigsaw pieces which obviously, eg, had a piece of train wheel on, and try to put them on what was obviously the top of the train in the picture.... He is appallingly bad at drawing, has no idea how to set things out so that they look attractive on the page (eg tiny drawing in one corner, or oversized drawing, or a heading that is not in any way centred), calculates where he should run to to get the ball far too slowly to be any good whatsoever at any ball sport, has to work out reflections and symmetry in maths little bit by little bit (he doesn't "see" the whole answer, but has to constantly ask himself whether the next line he draws should be away from or towards the mirror, etc), and has difficulties visualising nets of shapes as the solid shapes. His verbal IQ is exceptionally high, but his perceptual IQ is significantly affected by his visual-motor difficulties. He also needed to be shown in detail how to lay out his t-shirt to put it on: didn't seem to see that the long thin bits were for the arms, etc. He overcomes all this by learning some things by rote - show him how to break down into stages what he finds difficult and then build it back up again and he will be able to do it.

Anyway, I thought this might be interesting for others, if they have children with similar oddities.