Hearing problems...

Over four years ago, we waited months for J to be 'seen locally and failed' in relation to his hearing problems.  We were told this was necessary and we had to be told they could not assist J as this would then mean a referral to a tertiary centre might be possible.  So, despite us knowing from the outset what was required and who J should see, this is how J was eventually referred to Royal Throat Nose and Ear Hospital.  The RTNEH had a specialist Paediatric Hyperacusis clinic within its Nuffield Hearing & Speech Clinic.  It turned out, as a result of his referral to this specialist clinic and talking to the staff, that tinnitus, hyperacusis and Autism Spectrum Conditions often go hand in hand.  Something that, when we'd mentioned it locally to "professionals", was met with raised eyebrows and their 'fussy family again' eye roll.

Another thing we learnt early on from the specialists at the clinic is that, contrary to what had been shouted in J's face locally, hyperacusis can be painful and this is known because adult sufferers (who appear to be more readily believable than a child) report it as 'feeling like a knife is going through your head'.  So, to the local 'professional' who got down to J's level and shouted in his face "don't be silly J, there is NO noise and it doesn't hurt you", you are wrong and your 'clinical manner' sucks.

Once referred to London, J undertook a series of appointments at the clinic, the first of which was a real eye opener as we all learnt about how hyperacusis felt for him.  We agreed an intensive treatment programme with the team and during late 2011 we attended fortnightly appointments at the Nuffield H&SC.  We all saw clinical psychologists and J initially worked with them to explain the problems he had.  There was a marked change in his ability to verbalise matters when he was told what the names of the problems he has, how the brain works processing sound, that he was not alone in having the difficulties and that they CAN be painful.

The reason we had persisted with obtaining an appropriate specialist referral was that, prior to treatment, J was completely uncontrollable and put himself at risk when out and about.  Problems were at their most acute when we used public toilets on days out as, if someone used a handdryer,  J would absolutely HAVE to escape the noise he heard.  If an emergency vehicle passed by with its siren on, he'd run away - anywhere, just away... His hyperacusis meant his body was taken over by its 'flight' response and that's just what he would do - exit/flee, without warning and run as far away as possible.

By undertaking a series of counselling sessions, which allowed J to talk through things and experience loud noises in a controlled and safe way (for him), progress was made.  He started with deciding on some words (a mantra of sorts) to write down and have with him in situations when he feared there may be a loud noise.  We worked hard to provide controlled exposure to all sorts of different sounds - hairdryer, vacuum cleaner, handdryers and so on.  It took weeks and J had anxiety charts to fill in and rewards were agreed (yes, they were all Lego!) for when he met his targets.  He liked the charts, targets and rewards.  The continued work with exposure to sounds was a chore, he didn't like it and it was a MASSIVE undertaking to complete the London clinic's treatment plan and attend for every appointment.

Slowly, very slowly, J was able to switch the vacuum cleaner on and off.  Then, he'd switch it on for 5 seconds, then 10 and so on.  Next he'd stay in the room whilst the hairdryer was on.   And so on. Tasks were agreed with J in advance and he not only had to repeat them, he had to work to remain calm and log his worry level.  Initially it was really small steps but, amazingly, after months of hard work, J was able to use a hairdryer himself, tolerate the vacuum cleaner and be far less stressed by hand dryers when out and about.  He now regulates himself when a siren sounds and will often say out loud "is that something I should worry about? No? OK. Carry on, it's all right."

J still has ear defenders (yellow of course!) which are shown at the top of this post.  We were advised that using ear defenders can make matters worse (as they may not be with J when he experienced a loud noise) and often they worsen tinnitus (or rather it becomes more noticeable as the background/white news is reduced).  However, J does take his ear defenders in his back pack to places where he knows there is going to be a short burst of loud noise - eg his disability sports day where the event's start is marked by a fanfare, played by a military corps on brass instruments, in an enclosed and echoey sports hall.  He wears them for as short a time as is possible.

We know J has sensory processing difficulties which together with hyperacusis and tinnitus can make visits to busy places such as shops and cafes unpleasant.  Add to this his challenges with his autistic spectrum condition and his associated/additional communication difficulties and it becomes easier to understand why the 'simple' act of asking for and buying a drink is, at the moment, impossible for him.  What the setting brings to J is a seemingly overwhelming set of "everything" that, in his own words, "paralyses me with fear and worry".  He has been working on a chart to share with his therapists in an attempt to find a way/provide him with the means to buy a drink and his favourite cookie.  He WANTS to do this.

When he's made progress, and I am sure he will given time, then we will blog more about it... and perhaps share the whole of this chart (which he worked on today and sparked an interesting twitter chat).






NOTE - The audiology professionals' magazine Audacity has an article on the clinic J attended here and how it has a programme to assist with childhood tinnitus (see page 26 onwards).

We also blogged about J's tinnitus here.

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.

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.

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.

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. 

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.

Tackling Toothbrushing

Spiky therapy cushion for standing on...

Having found toothbrushing to be a problem for as long as J has had teeth (since he was 4 months old)... we have amassed quite a few tips, techniques and tricks to get us through this important daily care task.  It seems we are not alone in finding things challenging when addressing the tantrum inducing time that is toothbrushing.  So, here goes - if you recognise this as a difficult task to undertake, see what we've done and perhaps there's something that may work for you (for a while, at least!)

J says that it is unpleasant brushing his teeth and he doesn't like the sensations he gets.  This is a little odd, given that he is always mouthing objects and uses chewy tubes for deep sensory input.  However, as child with Sensory Processing Disorder,  we have found it's not unusual for him to be a sensory seeker and avoider in the same area!  What matters is to try to get the messages he is receiving to be positive ones for the activity being undertaken.  

So, techniques and methods used for toothbrushing have been:-

• Swaddling will sometimes work - the deep pressure sensation provides a feeling of security and calmness.  This is still a good option (even at 11 years old) after a shower when wrapped in a huge bath sheet as tiredness means he needs to be relaxed... he props himself against the wall and is cocooned.
• Different types of toothbrush and varied flavours of toothpaste - J chooses the brush/paste combination for tooth brushing.  He prefers a dry brush and a low foam toothpaste but also likes a minty taste.
• Firm touching around the mouth area and along the jaw bone prior to beginning the brushing has been encouraged. This is something J does for himself now.
• Positive tactile sensations -  J selects an item to stand on or play with (in his non brushing hand).  He likes a spiky therapy cushion some days, others he will choose a small spiky ball to squeeze in his hand.

This small spiky hand toy can help.

• Deep pressure on his shoulders whilst he is brushing - this used to be a favourite "only Mum can do it right" solution but it was good whilst it worked!
• Humming/singing along to the noise of the electric toothbrush - this seems a good distraction technique but works best when not too tired.
• Doing it together - J likes to mirror what someone else is doing whilst brushing... it helps him realise where/what/how he should be brushing.
• Using an app - there are some good apps to accompany brushing that indicate time and which teeth to brush.  Points are earned and this engaged J for a while - he prefers one called Teeth Timer.
• Visual sand timer countdown as to how long is left of the toothbrushing - allows J to realise there is an end in sight!
• Tick chart - this is completed morning and evening and a reward for a full week of ticks (two misses, not on the same day, are allowed). J chooses at the start of the week the reward he is cleaning towards.

Son's TEETH chart

All of the above have been a success at one time or another.  Many are used in combination.  There is no simple answer in this household and the surest thing we know about toothbrushing is that it's not the 2 minute task that many others have... we have to allow about 30 minutes.  During this time there is much discussion, briefing, kajoling and insistence.  It's not a straightforward task and it takes a great deal of patience, which I do not always have in sufficient amounts, so it is a pretty stressful way to start and finish each day.  

ADVANCE WARNING: We are aiming to cover handwriting in the next blog entry... although it will, doubtless, require more than one post as it's a BIG topic here.