Battling on...

It's a way of life for us that things are not as simple as we'd like.  Recently, things have become even more of a challenge... and not because they've changed (much) but that, once again, we are forced to read *things* in black and white.  We should be used to it as over the years, J has been assessed and tested many, many, many times but only a minute proportion of these 'evaluations' have come with a follow up of support and assistance.  What's worse is that the 'tests' are all about showing how difficult things are... there's little that's done to highlight the strengths and delightful characteristics J demonstrates on a daily basis.  This, in itself, is soul destroying.

Add to this the frustrating postcode lottery that means that a few miles to the West of where we live, things would be so different.  This is what is reality for us within the Midlands UK.  Suffice to say, where we live has been a disaster in terms of the interventions and assistance J has been offered... and it's now apparent that "because he looks normal" (whatever that may mean) he is even more disadvantaged as 'people' think he *shouldn't* have the severe problems he has.

The catalogue of matters we've dealt with is a long one but does include health and education.  We know alot about J and what will work for him but, for the most part, this is not given any credence.  Instead of being supported in our goals for him we are blocked by the very people whose job should be to assist.  Slopey shoulders abound with no-one wanting to raise their head above the parapet to assist and/or take responsibility for actions (or in J's case their INaction).

It's not all doom and gloom, support and advice has come from charities and other special needs parents.  But these are people that really *know* what we face and see the challenges for what they really are.  Most of the professionals (or 'service providers' as one parent told me to think of them <- a great tip, by the way) seem to do the bare minimum and, in some cases, actively work to prevent support.

Using the internet is great for linking up with similar people and information finding is easier as a result.  But local services should not be about us finding out what there is supposed to be available and then battling to get even a morsel of understanding... and we're not blaming this on austerity or the current administration.  This has been our experience all along - since J was 3... a whole DECADE.  It's just not good enough and the battle is only ongoing because his problems will NOT diminish (although, of course, we hope they might) and we won't be here forever.  It's worrying and wearing.  But we will persist.

The support of twitter pals has been fantastic... and the resources we've been able to learn about and access have been worthwhile.  But how much easier and better it could have been FOR J if support and understanding, as the default, was offered.

PLEASE don't judge people by how they look.  Don't presume to know what's happening in their life... and, if you can, please offer a thought for those who have a less straightforward run at life.  One day, in the future, it could be you or your loved ones facing similar challenges and demands.

Some Weighty Ideas

Having Developmental Co-ordination Disorder, or Dyspraxia, J has always struggled with knowing where his bits and bobs are.... or as those in the 'know' call it proprioception.  For instance, wandering around in the dark, when missing vital visual cues, he is far more adrift than if he's anchored to the floor in full daylight.

Night times when he was younger we would go into his room to find one leg up the wall and the other on the floor (yes, he is hypermobile, but this was ridiculous even for him) or both legs up the wall at the head of the bed with him covered by the duvet.  Other nights, he'd be found upside down INSIDE the duvet cover and, of course, he also fell out of bed regularly.  He shouted out in the night, some times as often as hourly, not knowing where he was, where his bedding was and how to get warm again.

Having read up loads on the matter, we decided to try weighted blankets (and, yes, we had tried firm tucking in with a blanket - not up to the job of restricting his cavorting nighttime antics).  Seven years ago it was hard to source weighted products in the UK and where they were available they were very expensive.



Luckily a relative is a frequent visitor to the US so we asked him to bring back a weighted blanket for J to try.  He got on OK with it initially - it is the sort that has sewn in pockets which are then filled with bags of plastic (we think) beads.  The good thing about this kind of blanket is you can adjust the weight and/or change the weight to areas where they're needed more. However, as the warmer nights came it was declared to be "too warm" and "lumpy so we looked for something a little less cumbersome.







We found another type of blanket which was far thinner, made of what feels like a sort of low pile plush fabric with a weighted, flexible layer between.  It is smaller - the size of a bath sheet - and great for deep pressure rolling, wrapping and tucking into bed.  It's also good for travelling. Having looked on the internet for what's currently out there to buy, I am pretty sure this blanket is what we have although when we bought there was no option to buy a slipcover and it was considerably more expensive! 



J's OT at the time suggested a weight around his shoulders may help him.  She showed him a dolphin shaped product and I was astonished at the price - well over £80 for something 40cm long.  It was similar to this from TTS Group which I see comes in two weights and is a far more reasonable £25.  In response to the suggestion (and my refusal to pay so much) my brain started to think about what we could use/make/adapt ourselves.

For Christmas, J had been given a dog with a wheat pouch within which was intended as a warming device... it didn't take me long to remove the wheat pouch (the dog has a velcro tummy opening) and make a pocket out of old curtain lining material.  This was then filled with ceramic baking beans and the pocket was double stitched closed.  Adding the now filled and heavy pocket bag into the dog and tah dah - J had his very own weighted dog who is still offering faithful service to his master to this day.  Luckily the dog 'outer' is washable and all that's required is to remove the weight.

In the same vein, a weighted lap pack was made and this is also used over J's wrists when he's typing to stop his hand tremors from being so off putting for him.

A wrist band, which we can vary the weight of easily, is also something we have to hand.  This is made from curtain weights which we got from a haberdashery department.  Originally it was going to be sewn into some neoprene (from an old wet suit) but J doesn't want that yet... it's a work in progress and will be completed once he's decided what weight he finds most effective.

We make a lot of use of a weighted backpack when out and about.  It's loaded up with our 'provisions' (food, water bottles, spare clothing) for an outing and it helps J to know where his back is as well as making him feel grounded - particularly useful in crowds.  As you can see, his bag has a handle on just behind his neck and this is grabbed should a stumble happen or to give directions (subtly) if a situation is becoming overwhelming for him. Also, it has an identi-label on it (for contact phone numbers), and many fiddle toys and sensory activities dangling from it.  We can hear these rattle in a distinctive way so can track J from quite a distance if he feels able to explore... and the backpack can provide distraction and calming familiarity should things become too much for him.

We hope these ideas are of interest and use. PLEASE remember to check that what you use is appropriate and safe for you and yours... this is a record of what works for us.  There is no guarantee it will for others but you may think there's something you'd like to research more.  Thanks for reading.

Modelling with Meccano

Keeping things interesting for J whilst trying to improve his manual dexterity and co-ordination is a daily task.  Finding items and activities that appeal to him is all important (we have used therapy putty many time in the past, blogged about his Hama beading and he is keen to Lego whenever he can).

We were lucky enough to be sent some meccano for J to review.  He had looked on the meccano UK website and chosen a Gears of War Helicopter - King Raven which was the model he was keen to assemble as soon as he set eyes on it.  Meccano was a good choice as it has small parts to deal with, over 300 in this set, and clear instructions to follow which help J with his planning skills.

True to form, J laid out all the pieces and inspected the manual to start with.  Then building commenced.  This was a task which took us a few days to complete and was a collaboration where J was project managing me when his dexterity let him down.  I am pleased to report, however, that towards the end of the build, J was able to complete most of the "structural assembly" himself.

J opened the plastic bags containing the parts with scissors and what follows is a montage of the build... and the comments are from J.

That's looking like it should...

These are a bit fiddly but the slots are good.

Nearly got the front wheel attached.

What's the next step?

It's looking good.

This is easy to follow...

...this is a bit more challenging!

It's looking like we're nearly done.

Ta dah!

This is bigger than I expected.

J loved working, over a number of days, on the model building and is looking forward to assembling the Space Chaos Heart of Darkness when he gets the chance!  He's particularly keen as it has "real life, working lights".   This set looked rather a challenge at the outset (having many pieces and almost 70 instructions) but J said of the whole undertaking "It was amazing and all my pals will be shocked at the size of the model!"

Disclosure - We were sent the meccano for free but these are our own views and pictures.  No fee has been paid for this blogpost.  Many thanks to Liz and Meccano UK.

Reasonable Adjustments - Part One

Over the years, we have made numerous attempts to find things that work for J in a variety of settings.  This first post on this matter, which we are calling 'adjustments', covers clothing... it is not an exhaustive list but details a few of the things we do/have done over the years.  Hopefully some will help you/yours.

Clothing ideas:-

• Poppered trousers - if possible we buy trousers with popper instead of buttons.  Where these aren't available, the trousers are altered to add a press fastener/ popper closure.
• Elasticated waists - where we can, we source trousers with adjustable elastic waistbands.  This allows J to pull the garment down/ up more easily without the need for help.  He is a thin lad so we also use the elastication to ensure he has the right leg length by pulling in the waist to fit.  The TU range at Sainsbury's is good for this, as are some GAP and Next clothing lines.  
• Lined trousers - J is somewhat picky about the feel of clothing (understatement).  He likes Boden lined trousers but they are quite pricey.  We try to buy in the sale when we can as he does particularly like their jersey lined skate pants... even though the waist size appears quite generous on him.  Pumpkin Patch also do lined trousers that he will wear.
• Velcro fastenings - these are really useful on all sorts of clothing and footwear. Particularly good for outdoor wear.  When J's hands become cold or if he is in a hurry he becomes less dextrous and velcro allows him to be self sufficient (most of the time).
• Over-the-head outerwear - this was a real life saver at school as J rarely had the time/ability to sort out zip closures for himself.  The combination of jostling, dark changing rooms and the need for speed meant J was usually outside at playtime in all weathers whilst wearing a gaping coat.  When we needed it, Boden had some fab half zip waterproof tops which were fleece lined so met J's need for 'something soft' too. Not sure they have them now though.
• Ski mittens - far easier to put on when your hands are cold or dexterity is limited.  Many also come with 'little hooky things' which means J has less chance of losing one (mind you, they don't stop him losing the pair!!)
• Contrast colour toe and heel socks - these allow J to see which way the socks should go on his feet.  However, they are only an assistant, he will still wear socks with the heel bit at the front.

Watch this space (well, blog) for more Reasonable Adjustments.... we have quite a few we use!

Meandering through Motor 'skills'

Where to start with this post?  First of all, this is not a comprehensive guide into motor skills, as the title suggests, it will be a meandering account of things we've tried/are trying with J.  We embarked on the wanderings in the knowledge that with strong gross motor skills, fine motor skills follow and with that the seemingly all important handwriting will emerge.  The trouble for us is that with J his gross motor skills, at 12, remain poor (although they have improved greatly and he has worked long, and hard, to master things.)  There is so much to say and cover that bite-sized posts may be the only way to go.   We have tried/employed/practised many, many, many items/programmes/techniques in the hope of finding out what works for J.

J has struggled all of his life with handedness (this was touched on in an earlier post - What about Writing)... he showed no preference as a youngster so, given his other difficulties, it was agreed to encourage him to use his right hand.  Now, this has made little difference.  Being brutally frank, he is the opposite of ambidextrous, that is he is equally poor with both hands!  We now know this is called being 'ambisinistrous'.
As said in the aforementioned earlier post, J has had access to all types of pens, grips, writing slopes, white boards, therapy putty, paints, brushes, gross and fine motor games and exercises.  All to very little avail.  However, the facts remain that he has little stamina, holds implements at odd angles, cannot align his physical output with his mind's eye picture of what he wants to deliver... so you can imagine the frustration he feels.  In the family, we call this his frustration gap and we try to encourage him to keep putting pen to paper with simple dot-to-dots, line games, letter formation games and so on.

Some of the pens we have in our arsenal of handwriting tempters... he tends towards those with fatter grips and that can be corrected.  So, the frixion pen was a real find - it writes like a roller ball yet rubs out like a pencil.  The Stabilo s'move range are brilliant for reminding him where his fingers need to be to hold the pen/pencil.  And the selection of felt tipped pens he has used is vast.

Over the years, although he has poor hand eye co-ordination J has adored Hama beads and is a still a keen beader.  There has been the odd disaster when his masterpiece hasn't made it to the ironing board for fusing before a tremor has jerked the beads all over the floor.  He loves telling the story of when he was trying to open a packet of beads (5000 of them) and was tugging at the packaging whilst saying "Mum, can you help me open - oooooops!"  and lo!, there were 5000 beads spread far and wide across the floor. Whoops.  We both had to laugh but my goodness they can't half travel.

Naturally, he's also been very much into Lego and Meccano and comes up with some massively complex creations.  All of which have added to his fine motor skills and co-ordination/planning.  He has a huge collection of Lego... dreams of the stuff and talks about 'improvements' to the current range of models he's working on.  Lego is great for him... he gets to express himself, can (usually) do all his Legoing by himself and the models are quite sturdy so withstand any unexpected tremors.  Of course, sometimes a 'disastrous' failure happens and it will require immediate re-building of the model 'just the way it was'. Meccano is a bit more structured, the instruction leaflets great for planning and the skill required to use the bolt/nuts in situ is one he's starting to master.

Work on gross motor skills happens throughout every day.  J will catch and throw (socks usually) and can even bounce a mid-sized ball and walk with it a few steps now.  He will jump off steps (only up to 4) to get feedback and 'ground' himself.  He balances on a gym ball or physio roll (peanut) when he watches television so he knows where his body is... He's on the move all the time. In summer he will bounce on the trampoline. He has a swing seat indoors and loves to use that to calm down - but it also lets him know where his 'bits and bobs' are.  More to follow on this in a later post...

Looking at Laces

Amongst other things, J finds laces on footwear extremely difficult to deal with.  The combination of fiddly-ness, lack of power in his hands and general poor coordination mean that laces are viewed by him with dismay.  Added to this, is the eternal problem of having to go to a shop to have his feet measured, going through the explanation/demonstration to the shoe fitter about his 'aggressive' orthotic insoles and then finding (hopefully) that there is just one pair of boots that meet all requirements - supportive ankle, big enough for orthotic, waterproof and with velcro fastening.  However, on most recent occasions, no shop has been able to supply us with a suitable 'footwear solution'.

In the past, the Clarks online ordering of boots and collection/purchase post-fitting in store has worked well - but not this time.  Boots are only available in the winter season and unfortunately they don't offer any boots in an H fitting which is required by J.  So, we had to find a different solution.  When J was seen by the podiatrist at Great Ormond Street Hospital earlier in the year, she suggested that Timberland boots were something we could try.  A quick internet search revealed a pair of these boots that met all requirements bar the velcro fastening.  The boots were ordered and collected, had their insoles removed and J's orthotics inserted.  It was looking positive as the insoles fitted the length of the boot well.  Then J shoehorned his feet into the boots (literally) - he finds using a long, from Ikea, shoehorn the best way to get his feet into boots.  Then came the laces.  He was not happy to see them but, with a little lateral thinking on my part, they became acceptable to him.

I sourced a couple of lace toggles/locks and cap/end covers. (search on ebay for cord locks or spring toggles).

Here's what I did.  I inserted the laces in a toggle, added an end cap and tied the lace ends before pulling the cap down.  Not a perfect solution to tying the laces but at least J can make a good attempt at putting his boots on himself and we can check the tightness/fit prior to going out.  Result.  Quicker for us all with J having his own way to manage putting boots on.

What about writing?

It was obvious from an early age that J would find writing a chore. He never wanted to use crayons (although was happy to watch others do the colouring in as directed by him), frequently used implements in either/both hands and had no well developed handedness.  Given this lack of favouring of one hand over another, we took the decision, when he started in Reception class to encourage use of his right hand to write with.  It was quickly apparent that his fine motor skills were not great.  Seeing as his gross motor skills were also developing slowly, this should not have come as a surprise.  However, school were still adamant that he MUST learn to write... and quickly.  He was sent home with remedial worksheets, taken outside the classroom to complete work when the other children were playing (even though he was falling asleep and just could NOT do what was asked of him) and generally subjected to a barrage of hands on penmanship. Despite being diagnosed with Developmental Co-ordination Disorder (dyspraxia) during his Reception year the teacher's insistence he carried on with handwriting was ever present.

None of this helped.  No matter how hard he tried, J remained slow to form letters, had trouble with manipulation of writing implements (and scissors), complained of fatigue and was, in the end, completely turned off handwriting.  As I was (and still am) a stationery collector with pens aplenty, we sought out all manner of different styles of pen and pencil.  Every type of pencil grip was trialled, we have writing slopes, cut out windows to reduce the area he has to write in, coloured note pads (crossbow education have a great range), paper with raised lines, squared pads, shaded writing books, the list is endless.  He tried short pencils (as this 'forces' a tripod grip), fat pens (to reduce strain) and textured pencils (so he could feel them better). Fat, light pens with a smooth writing action are favoured - so the Staedtler Mechanical pencil we found at the education show one year was a marvel.  It's fat, light and has a soft, thick lead together with a proper mechanical pencil action. It's also a bit yellow...  Bingo.  This is the implement of choice when pencil will 'do'.  When a pen is required then the Pilot Frixion range are a godsend... any errors can be removed and J finds the pens quite comfy to use with their defined grip area.

We supplied the school with an Alphasmart NEO for times when it was more important to get J's ideas down on paper than for him to use handwriting.  Again, none of it helped.  Even now, at 12, letters still have to be talked about - where does a "guh" go - and even his own name he cannot reliably write correctly.

So, what do we do to assist him?  Well, first off we took him out of school!  There you are, in one fell swoop he was much happier at not being forced to write "for no reason"...  he does write, by hand, thank you letters, short post cards and each day he does a small amount of handwritten 'work'.  He may write a shopping list (for me, as I am too busy to do it myself - he is helping me), a list of characters from Pokemon and their special powers, some ideas from Horrible Histories... you get the idea.  Stuff he wants to write or things that he feels have a purpose.  No more copying from a board/book/worksheet just to fill time.  He uses white board pens on our kitchen table when working on problems from the mathletics site.  There is a reminder sheet of how letter looks stuck to the underside of the glass, which reminds him of how to write each letter.

When he was first out of school we discussed a programme of letter formation with his Occupational Therapist.  She had found out that he didn't realise the space that each letter 'ought' to take up - that is there are ascenders, descenders and letters with both!  So, using a subject that interested him at the time, we linked each letter to a part of a volcano - those with ascenders went to the ash cloud, descenders the magma chamber and the rest were the cone.  This, together with doing a daily exercise using the Handwriting Without Tears programme we reinforced the idea of how letters are formed, where they 'go' and how they should look... it's a multi-sensory approach (although we had to amend it slightly as J can't bear the sound/feel of chalk but that's another story). 

I guess there is no end to this post as J still struggles to write, has very low stamina and is poor at forming words.  He uses technology as much as he can.  Produces mindmaps to encapsulate his thoughts and ideas and will dictate to me should he feel that he has more to say.

If you work with a child like J, please consider just how incredibly hard it is for them.  Our experience tells us they are not "being difficult" or "wasting time".  They are struggling to achieve.  Have you explained it VERY clearly to them?  Do they 'get' what you are asking them to do?  Are you sure?  Adding to their workload with additional tasks or insisting on task completion (whilst others go out to play) is not constructive.  Give them quick ways to do things, provide them with printouts and encourage them to love putting pen to paper.  Don't turn them off by putting up unattainable barriers.  Allow them to express themselves in different ways, be innovative, use smaller sheets of paper, reduce the amount they are expected to deliver and, hopefully, with time the HAND writing will follow (if they are able).  But if they're not, so what?  When was the last time you put pen to paper?  Most things these days are done online, electronically or via text so give those skills and they'll be well away.