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.

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!

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.