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.

Jargon Busting? Maybe...

When you get into the realms of Special Educational Needs and Disability (SEN/D) a whole new language opens up in front of you.  At first, a decade ago, we went along to meetings where 'professionals' (or service providers) were spouting off terms that we had never heard before... and so the struggle to educate ourselves in this new environment and language began.  At the outset we (naively) believed the 'professionals' would know best as they would have experienced the difficulties we were talking about many times before and J is our only child.  This was a major mistake.   We should have been warned that many 'professionals' have such a honed area of expertise that they couldn't see J as a whole person - merely talk to the particular area in which they prided themselves in knowing alot about.  Rarely do the 'professionals' we meet see J as a whole, rarely do they go away and seek information prior to subsequent appointments and rarely do they explain, properly, what in the world they are wittering on about.... for that is what it sometimes (often) seems like.

Over the years, we have learned a huge number of TLAs (Three Letter Acronyms) and shorthand speak for 'things' that relate to J.  Starting in pre-school with SENCo - Special Educational Needs Co-Ordinator making an IEP - Individual Education Plan.  Moving through to LA - Local Authority and 'professionals' such as EP - Educational Psychologist, SLT (SaLT or S&LT) Speech and Language Therapist, OT - Occupational Therapist, PT - Physiotherapist.

Later came the dxs (diagnoses), treatments, investigations, assessments and discussions about difficulites: DCD - Developmental Co-ordination Disorder, ASD - Autism Spectrum Diagnosis/Disorder, AS - Asperger's Syndrome, LD - Learning Difficulties, EDS - Ehlers Danlos Syndrome, SPD - Sensory Processing Difficulties/Disorder, CAE - Childhood Absence Epilepsy, AED - Anti-Epileptic Drug, SI - Sensory Integration, MRI - Magnetic Resonance Imaging, EEG - Electro Encephalo Gram, CE - Conductive Education, VF - Video Fluoroscopy, SIPT - Sensory Integration and Praxis Test, WISC - Wechsler Intelligence Scale for Children, CAMHS - Child and Adolescent Mental Health Service, CCG - Clinical Commissioning Group

Along the way you hear of other terms: DS - Down's Syndrome, CP - Cerebral Palsy, ADHD - Attention Deficit Hyperactivity Disorder, ADD - Attention Deficit Disorder, LAC - Looked After Children, OCD - Obsessive Compulsive Disorder, BI - Best Interests, CoP - Court of Protection, CAF - Common Assessment Framework, MH - Mental Health, EBD - Emotional and Behavioural Difficulties, PMLD - Profound and Multiple Learning Difficulties, SW - Social Worker, PA - Personal Assistant, VI - Visual Impairment, HI - Hearing Impairment, NT - Neuro Typical

Then the terms relating to legal challenges regarding education and disability:  SSEN - Statutory Statement of Special Educational Needs,  WD - Working Document, FTT - First Tier Tribunal, UTT - Upper Tier Tribunal, JR - Judicial Review. From 1 Sept 2104 SSEN will be transitioned to EHCPs - Education Health and Care Plans, LGO - Local Government Ombudsman, PHSO - Parliamentary and Health Service Ombudsman.

Not forgetting the DLA - Disability Living Allowance, CA - Carer's Allowance, PIP - Personal Independence Allowance, DSA - Disabled Student's Allowance, ESA - Employment and Support Allowance.

Unfortunately, this is in no way a comprehensive list of terms that are regularly bandied about in relation to Children and Young People (CYP) like J... it's a quick list that has come from a twitter chat (where TLAs come in useful to maximise the 140 character limit) in which someone expressed wholly understandable confusion around the terms being used.  I'd started this post ages ago but am now wondering if perhaps it may help a bit?  Whatever, it's being posted and can be used/not as suits.

Feel free to add more terms through using the comments below!

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... 

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.

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...