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!

StickyTape-less Gift Wrap Method

Last year we blogged about the things that challenge J at Christmas (and birthdays too).  He doesn't like wrapping paper, won't open envelopes and can't cope with sticky tape - to name a few!  So, as is usual, I have kept looking for ideas that may help out with his difficulties.

During this week, I spotted a link to a youtube film from Royal Mail who'd asked an "international gift wrapping expert" for tips.  Taking a quick look, it was apparent there may be a technique she used that could work for J.  She speeds through it quite quickly (and uses paper that clearly costs mega-bucks) but I've broken it down into steps using the pics below... and it truly was a 'speed wrap' not and 'expert' wrap that I did!  Have a look and see what you think - it may help someone you know to access presents.

Get a piece of wrapping paper that's more than 5 times longer and at least twice the width of item being wrapped.

Place item near the bottom of the wrapping paper and fold the long edges in.

Crease the paper from the item to the cut edge, then fold in the corners and crease the fold line.

Fold up the end to enclose the item.

Crease the paper at the top of the item, then carefully (holding the folded end in place) fold the whole item over.

Crease the top end, again, and fold up to enclose in paper.

Crease and fold up again.

Carefully 'flip' the gift over so the remaining paper is now facing you.

Cut off excess paper length, aiming to cut the paper wrap to just cover the package.

Crease the sides.

Open out the newly cut end and fold in the corners, at shallow angle to the midpoint.

Fold in another, slightly larger, triangle at the corners.

Fold the flap down over the gift and fold the corners back on themselves.

Secure the flap with some ribbon...

... and here's the finished parcel (yours, and the 'expert wrapper', gifts will doubtless look better!)

You can make yours pretty with a bow and dangly baubles, bells, candy canes, attached to the ribbon but this is a gift heading to our little Chihuahua, Peppie, so we went for the 'less is more' wrapping approach. Enjoy!

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.