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.

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!

Helping Hands with Hama Beads

J has worked a lot on trying to master fine motor skills.  Because of the extreme hypermobility of his fingers, he finds handwriting a real chore and his stamina in much reduced.  Working with occupational therapists, he has done loads of exercises to assist his motor skills - starting at gross motor which feeds down to fine motor - using therapy putty, stress balls, scissors and so on.  But, one of the activities that J chooses for himself, and has done for years, is making Hama bead designs.  We have a houseful of them.

In view of this, it was a delight to be invited to take our pick from the wonderful range on offer at Craft Merrily.  So, J had a look and chose the UFO set as he was keen to get his hands on some new coloured glow in the dark beads. The set arrived in the post and we saved it for a special activity afternoon. 

First of all, J checked the contents, luckily they were all present and correct.  Next, he decided which model to attempt... and went for the rocket.  So, the bead bag was opened and the beads were sorted into 'old' glow in the dark colour and 'new' colours.  Then beading began.

Hama patterns are great to get J focusing on planning what goes where and hand eye co-ordination is a major part of the task.  He spends time considering what bead to use and is very good at following the pattern.  Once the desired pattern has been made, the dangerous walk to the ironing board begins... 

Once safely left on the ironing board, it's over to me for the delicate task of using the ironing paper and a hot, dry iron to ensure all the beads fuse together.  There's nothing worse than a loose or floppy bead, apparently!















When the beads cooled, the paper was peeled off to reveal the bead masterpiece.  It was left to 'charge' its glow in the darkness on the windowsill and, then, removed from the peg board.


The final stages - and we have lift off! 
This is a great set, with a number of models to make.  When they're all done, there's a frame and thread to use to hang them from.  J is hoping to have them all done in time for Hallowe'en and, if there are any beads left, he's already planning a spooky spider web design with the hexagonal template.

We try to integrate J's therapy into his learning each day by using many techniques, products and strategies.  Hama beading doesn't feel to him like he's doing therapy and, even better, at the end of a session he has something to show for his efforts.

Thanks to Merry for sending us this to try.