Ideas for organisation and planning

J has struggled with keeping track of 'things'... whether they are physical belongings or the passage of time and the need to move onto a new activity.  We are experts in charts, lists, timetables, visual cues, reminders, tick sheets to name a few.  Early on, I realised the laminator would be my friend.  J hates the feel of certain types of paper but if it's encased in a bonded plastic wallet - hey presto, he will touch it!  Not only that but if we make a sufficiently 'generic' template, we can laminate it and then use dry wipe pens to customise it as appropriate.

For things like hand washing, when J was younger, we took pictures of each of the steps involved so he got them in the right order without having to always ask (or, more often, forget what to do so didn't bother).

Blank month template - created in Excel

We use timetables - monthly overviews and then weekly detail is added on a Monday. Ours are laminated sheets and J uses whiteboard pens to fill them in.  Using them to put on the 'definites' like therapy appointments and activities as well as maybes like seeing friends or chores around the house/garden.  J likes to see his weekly timetable updated on a Monday and, if there's a hated dental appointment ahead, he DOES NOT want that mentioned again until we set off.

Tick lists are good for 'what do I need in my bag' and used to consist of things like water bottle, fiddle toy, items for activity, snacks, suncream, hat, glasses and so on.  But these days, after years of learning, J will talk these through 'out loud' to himself when getting ready for the day rather than use a physical list.  Actually, he talks through most tasks if he's undertaking them 'solo'.  He seems to need the repetition to consolidate the action.

A great part of J's organisation and planning 'training' has been cooking.  He follows a recipe and will take each piece step by step.  He likes the familiarity of gathering the ingredients, checking for the equipment and then following the method.  Recently we have started to type up and laminate favourite recipes.  With a clear layout and step by step instructions, these sheets are also used as tick sheets to keep track of where in the recipe has been reached.

We often use a cooking analogy when taking on other things like packing an overnight bag or sorting out what is needed for a hydrotherapy session - remembering 'ingredients' (things needed for the task/outing) and 'method' (what will be done, in which order to achieve the outcome).

Shoe sticker

As a younger child, colour coding things also worked well.  Obviously, he loved all things yellow (hence the name of the blog) and
so, where possible, we gathered items that were yellow and then when looking for 'our stuff' when leaving Nana's or coming home from sports club, he'd look for yellow items that may be ours.  We had a blue bag for school so things related to that were also blue. 

Home made shoe sticker

He had stickers, cut in half, in his shoes so that the picture was showing properly when the shoes were put together.  He then knew the shoes were the right way round and would go on the correct feet.

Counting down the time to a change of task or getting ready to go out is still something we do.  J has very little concept of the passage of time and hates to be 'surprised' by what he sees as a sudden change.  In school he had a sand timer (which he'd tip onto its side) and we have digital timers that we set for him to see and hear the time passing.  These days, for going out of the house, we do a fifteen minute warning, a five minute warning and a 'right, time to get going'... the dog has picked up on the word "right" and dashes about which is an additional cue to make J realise his time's up!

Of course, there are resources aplenty to buy online... usually at great cost because anything labelled SEN or disability aid appears to have a hefty mark up added.  So, I have spent hours trawling sites, reading books, chatting to therapists and seeking our own 'version' of things that work for us.

Key Marking

J has a problem with locating things.  As mentioned in this blog, he likes the colour yellow. A lot.  Wandering around Homebase the other day, a small pot of Rustoleum Painter's Touch gloss finish in Bright Yellow was spotted... and, looking at the materials it can be used on, metal is covered.  So, a 20ml pot was bought (for £1.99).  We would paint the keys we need to find quickly - key covers have been tried in the past but they never last long.

Today, we assembled our equipment - old newspaper, small paintbrushes, keys and paint.

Covering the table with newspaper, the paint shaken and the correct key identified.

The key was painted yellow (we were lazy and didn't take it off the key ring)...








...and left to dry in the sunshine.

Once fully dry, it took about an hour, we had two sets of keys with a lovely bright yellow key for us to spot - effectively, a visual "USE ME" for all of us to see.

As shown in our pictures, we also use yellow wristbands on key rings as these allow the keys to be seen and held easily.  J's getting used to using keys when we go on dog walks - locking the door and keeping the keys safe - and having a wristband means he worries less about losing them.  Attaching them to his wrist gives him the security to know he has the keys with him and also has them readily available when arriving back at the door.

Handling Hairbrushing and Haircuts

So, amongst his hypersensitivities, J has a real aversion to the touching, cutting and brushing of his hair.  We long ago realised that the 'cheery chappy' ruffling of a youngster's hair by an adult was something that would send J into a flat spin.  He loathes even the slightest touch of his hair.  In fact, the lighter the touch, the more he tends to dislike it.

Hairbrushing, when it is undertaken, is a much screamed about and avoided chore.  J will not brush his own hair (usually) and is very anti 'someone else doing it'...  So, on most days, we tend to keep it to a minimum.  However, sometime, the bedhair and ruffle look is not going to be OK for heading out so we do some serious negotiations around how to get a brush through the hair.  Usually, this will entail a 'distraction' agreement such as J uses the iPad to minecraft whilst I speedily attempt to tame his locks.  The other month, things changed a bit and a step towards a solution was taken.  A friend's daughter uses a Tangle Teezer and she suggested we try one out.  I mentioned this to J (as we've tried different brush types in the past and don't want another gathering dust in the bathroom cupboard) and he said "well, if it's yellow I will give it a go".... So, my task was to source a yellow Tangle Teezer.  First stop was the Tangle Teezer website where, to my dismay, I discovered they don't do yellow brushes.  All was not lost, however, as I emailed them through their contact form and an impressively swift reply arrrived by email.  Not only did they have a special salon edition yellow brush that they had found in their warehouse, but they were offering to send it out for J!!  The parcel was swiftly delivered and the lovely Sara had exceeded our expectations by not only sending the yellow brush, but it was packed in a box with yellow tissue paper... this was met with great delight. 

The brush was inspected and set to one side and then, a few days later, J actually brushed his hair with the Tangle Teezer and said 'it's not that bad' which is high praise indeed.



Thank you Tangle Teezer for going that extra mile and finding a brush that J is willing to use.  We really do appreciate it.





Haircuts are something that we have come to carry out in a regimented way to allow J to know what to expect.  He goes to a local barber, has the same chap cut his hair and sometimes does now actually talk whilst he's there.  The whole thing is a trial to be tolerated but only on a quiet day, when he's feeling well and we've talked about it for a couple of weeks beforehand.  There is now a trigger length when he will mention he may need a haircut - when his hair whips his eyes when trampolining.  We know it's then time to start the preparation and that, soon-ish, the problem hair will hit the floor having been cut.  The barber knows all about J and has been cutting his hair for well over 7 years.  He commented the last time that J's tremors were less noticeable which is good.  In the past, at a previous barber's, the 'awful man' shouted across to me "has he got Parkinson's or something? He's twitching like mad here"... so I said "actually he DOES have a neurological disorder - thanks for sharing that with the whole shop".  Needless to say we never returned to that particular place.  For J, having his haircut is all about knowing what to expect and how long he has to manage dealing with getting it done...  We aim to go early in the day and, after a haircut, we don't plan anything else as J just wants to return home to his Lego and swingseat.

Is this sort of thing familiar to you?  How do you deal with such senstivities?  Share your ideas and solutions in the comments below... 

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.

Keeping Christmas Calm and Coping

December is upon us and the build up to Christmas is in full swing.  Some find this an exciting time of year full of anticipation and promise.  Others don't.

J struggles with crowds, loathes surprises and can't bear loud music 'blaring out and filling my head'.  So, we decided to chat about a few things that he thinks make this time of year more easy for him to deal with.

When he was in school, he hated the change of daily/weekly routine that inevitably came with end of term/Christmas show/party preparations and outings.  Surprises are NOT fun for him.  He says 'I like to know what to expect'.

Regarding presents, again, surprises are not welcome.  What works well is when J makes a list of 'things I would be happy to get... but I know I won't get all of them'.  Then we try to choose from them - although the list is always Lego, Pokemon, Nintendo and Star Wars items so we're pretty used to his likes by now.

Wrapping paper is a big issue.  J can't even be in the same room as brown corrugated cardboard and finds many paper textures unbearable.  He actually gets goosebumps when he hears or touches paper/card.  Today was quite notable as we managed to get some Christmas present wrapping done - he touched, cut, folded and stuck the paper.  Then he wrote the tag and stuck that on.  It took an hour and a half to wrap just four presents but he did them all.  This sort of OT activity works well because he can see there's a reason for what he needs to do.

For presents that J receives, he hates touching the wrapping paper and that's without having to deal with sellotaped ends.  His grandparents refuse to adjust their wrapping technique to accommodate this so I 'doctor' all presents prior to J getting them.  The ends are opened, with just a small piece of tape left to hold the wrapping in place.  With cards, I open the envelopes and he *may* remove the card depending on "how it looks like it feels".

Presents we give to J are wrapped with minimal taping that mean the innards are easy to retrieve or else they are placed in a gift bag with a simple, small piece of tape on the top edge.  Where things are too big to use these, we just use a plastic carrier bag and the ones from the Lego store, being yellow and mentioning Lego, work very well indeed.  We reuse these year after year.

Christmas food is handled by writing on our weekly timetable (a chart I made and then laminated so we can use white board pens on it) the meals for each day.  J talks about what he's happy to eat and we let him stick to that.  We want as calm a time as possible and find it's not the time to challenge his boundaries. 

Visiting people does not, generally, happen.  We have a particularly fantastic family who we've known for years that we sometimes pop to see but our visit follows a standard pattern and we take our own food that we share with everyone.  J knows where to go if he's finding it too much and wants to take some time out.  Our pals know not to make a fuss about things and understand that J never, ever says "Goodbye", he just heads off to the car and that's it. Visit done!

Basically, J likes things the way they are.  Christmas is no different.  So, if you know someone who has similar challenges, please bear in mind that what you like may not be the same for them.  There are ways round things, it's just a matter of finding, and accepting, what works for you/them.

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.

Sleep Solution Trial

Now, I know the next blog entry on here was going to be about handwriting but it's looking to be a bit of a long job to post all of our experiences in that area.  It will happen, just in a few more weeks!  Instead, it seems a more pertinent blog is about something that's very new (and exciting) to us.

Those that follow us on twitter will be aware that we've been given a sleep solution/system to trial for J.  He has never slept soundly throughout the night and, recently, daytime tiredness has been way more of a problem.  He falls asleep in the car, is lethargic and has to continually rest when we are out and about.  Now,  how much of this is down to stamina problems as a result of his Ehlers-Danlos Syndrome, and how much because he doesn't truly rest at night is anyone's guess.  But the one thing we do know is that the combination of the two makes for a tired chap.

We've known for some considerable time that J's dyspraxia and sensory processing/integration problems mean that he has difficulty with proprioception (basically the body's innate ability to sense where its bodyparts are)... and that this is even worse when he can't see where his limbs actually are.  So, nighttime, in darkness he flails around to seek feedback which allows him to create a mental map as to where he actually is.  This means that he will move around constantly - calling out sometimes, hitting his legs/head against the wall, sleeping in odd positions (we've found him with his legs UP the wall) and needs to be re-covered by his bedding at regular intervals.  We have weighted blankets which are quite good in the winter (when the additional temperature they provide is not so much of a problem).  We have a bedtime routine that is followed and he sleeps in a room with a blackout blind and has curtains with a blackout lining.

As I said, I have been suspicious for many years that J does not actually have deep sleep ever.  The excessive tiredness seems to point to this too.  Hence, it was suggested by J's community physiotherapist that he tries out a sleep system.  An appointment was made for July 18th for us to learn about and set up the system and so the scene was set.  This Monday's appointment was met with controlled excitement by J and we were introduced to the concept.

So, what is the sleep system we are trying out?  It's called  Symmetrisleep and is a series of overlays for J's normal bed.  There's a lower sheet that has grid markings on and has a brushed texture, some supports (which are L shaped plastic, covered in padding, with velcro strips which attach to the grid undersheet), a thicker overlay which feels foam like and has an open weave top and finally a loose 'fitted' sheet that regulates body temperature.  We set up the system without the wedges/supports, got J to lie on it and then put in some small chest supports.  Next a large leg support was put into place... and voila! 'twas ready for inaction.  J was particularly impressed to be reminded that his bed was now reminiscent of Homer Simpson's couch indentation and was rather keen to give it a go!

It is early days... or rather nights, but so far the signs are promising. Monday night J couldn't wait to tell his Dad all about the new bed, was desperate to get to bedtime and went off to the land of nod with not a whimper.  Such was his quietness that I had to keep going in to check on him... and so deep was his sleep that we were able to take photos of him (using a flash) without him even stirring!  He did not call out in the night, he did not wriggle and he kept his bedding in place.  Of course, he was still up nearer to 6am (albeit AFTER) than I would like but I know I can't have everything and I did get 5 hours of unbroken sleep.  Last night was similarly peaceful, the bed clothes again remained in situ and there was another too close to 6am start to the day.  However, last night I had 6 hours of unbroken sleep. 

I have been in touch with our lovely physio to tell her how each night has gone and we are both now keeping diaries for the inevitable battle that will come should the decision be made, at the end of the trial, to apply for funding for this system for J.  An astonishing fact, which we hope will not be a one off, is that we went out with friends yesterday to a country house garden.  For the first time ever, J was able to keep up with his pals, play hide and seek, and generally wander about for the whole 4 hours without needing any more rests/breaks/sitdowns than his pals!  Can this continue?  Only time will tell.

Update - 8.8.11

The sleep system definitely had a positive impact on J's sleep quality.  After one week, he started to wake after 7am.  By the end of the three week trial, he seemed to be waking between 7.30 and 7.45am.  He loved the system, said it was cosy and gave him energy.  During the trial, we had to re-locate the chest supports as he'd grown but it was a simple task and easily achieved. 

Now we have no system.  We will continue to document J's sleep pattern and energy levels.  If all goes to plan, then a funding panel will be presented with the data and make a decision at the end of August.  All we are hoping for is continued, good quality sleep. Fingers crossed!

Update - 15.8.11

Sadly the removal of the sleep system has meant a week of restless nights and early mornings.  I have maintained the Sleep Record sheet and it clearly shows J has returned to his pre-trial wakefulness patterns.  This morning he woke at 6.05am compared with 7.30am just a week ago.  During the last week, J's been complaining of tiredness, has been moody and had a number of meltdowns.  Much yawning and shouting has gone on.  I have taken a picture of him sleeping in a twisted position, with one foot on the floor.  He's also had back pain and required massages to attempt to alleviate symptoms.  

There is good news, however, as all the noted changes in the last week add to the case that the system worked for J and it should make the case presented to panel stronger.  Now to await the decision before moving on to the next 'phase'.  

October Update

After much waiting, a delay in the case going before the 'panel' and so on, we learnt that, although the case was great, it was not something that fell within the remit of funding.  Naturally, we were pretty frustrated by this point.  However, our lovely community physio had discussed J's case at a staff meeting and, following this, we were provided with an air mantle and oversheet which form a major part of the system.  Then it was a case of procuring the remaining system components - wedges, pads and the undersheet.  Cutting a long story short, the small wedges and pads have been provided on long term loan and for the remainder we have placed a personal order with the company making use of some saved funds from J's Disability Living Allowance.  It is hoped that the complete system will be with us by the end of the month.  J cannot wait - he is VERY excited.

Follow up

We have the system. J loves it. Comfy, easily adjusted and cosy too.  Could do with another bamboo sheet as it is something of a challenge to 'turn around' the one fitted sheet we currently have - we don't have a tumble dryer and there aren't quite enough hours in the day to dry it in the wintry weather.... PLUS J's spotted some pillow "options" in the price list he likes the sound of!  We'd better get saving.