WALES ELECTIVE HOME EDUCATION GUIDELINES - Updated 9th January 2017.

NEWLY updated Elective Home Education Guidelines published 9.01.2017

Direct link to the guidelines on the Welsh Government Website.

http://gov.wales/topics/educationandskills/schoolshome/pupilsupport/elective-home-education-guidance/?lang=en

Common Terminology & the Law in Wales

SEN = Special Educational Needs. With the advent of the Additional Learning Needs Bill the phrase Special  Educational Needs has been superseded for all but the still current SEN CoP.  Thus instead of SEN departments we now hear the term ALN department. In schools the job title SENCO is currently being replaced by ALNCO (Additional Learning Needs Coordinator).

ALN - Additional Learning Needs. You'll hear this phrase used more and more as local authorities begin to prepare for the anticipated rollout of new legislation in 2018. The two phrases should be considered interchangeable during this transition phase.

Current SEN Code of practice - The SEN CoP This document should be considered every parent/carer and education professionals main reference as it clearly outlines what the Welsh Government considers to be best practice.  
http://learning.gov.wales/docs/learningwales/publications/131016-sen-code-of-practice-for-wales-en.pdf 

EHE - Self-funded programmes are called EHE (Elective Home Education). No formal monitoring of provision, but an annual meeting outside the home is now expected. Parents are expected to show willingness to engage with their Local Authority on an annual basis.  Parents who are funding their child's education themselves already know how well their children are progressing. The parents assume full legal and fiscal responsibility for the education a child receives. Many parents who feel their children have been failed by the system, resent attempts to monitor them by that same system. Elective Home Education Government guidance here.  We keep a list of local EHE groups in our online support group for newcomers to enable newcomers to Home Education to be able to go and meet their local group/s.

EOTAS - LA funded home programmes are commonly referred to as EOTAS (Education Other Than At School) in official documentation. The Local authority is responsible for the Education be provided. This group of pupils includes those in Hospital schools & PRU's as well as those receiving Home Tuition from LA tutors,  ABA or II programmes in the Home environment. Monitoring of the LA funded provision is right and proper to ensure taxpayers money is spent correctly. Welsh Government guidance here. In many areas these services are under threat due to funding cuts. 

It is incredibly important for ALL parents of children to be aware of the very clear difference in status between EHE & EOTAS, both in terms of funding expectations, and their own duties under the law.  

FORCED Home Educators - This is a grey area which covers children who are not currently in the school environment for a variety of reasons from bullying to illness and lack of support at school for special needs. Legally children in this group may fall into either of the two categories listed above. This group has become and increasing phenomenon in recent years as sadly cuts to NHS & Education services have begun to bite. The shortage of specialist teaching facilities is a contributory factor, as is the overload on child mental health services at present.  It is in everyone's interest to ensure that this growth is halted. This term is used a lot in Home Education support circles but we'd really rather not have to!
Off-rolling is a term often used to refer to illegal exclusion of ALN pupils and if this happens to your child we'll happily put you in touch with organisations that can help. 

FLEXI - schoolers. There are children who spend part of their week in school and part of it being educated at Home. Permission to do this is at the discretion of the individual Head Teacher so arrangements vary, and the child remains on the school roll.

Access to Education and Support for Children and Young People with Medical NeedsUseful for parents trying to avoid joining the ranks of forced home http://learning.gov.wales/docs/learningwales/publications/131016-access-to-education-for-children-with-medical-needs-en.pdf

Social Services and Wellbeing Act (Wales) 2014 which replaces part III of the existing Children's Act from April 2016.  This is a crucial change of approach from "welfare" to "well-being" & now covers whole of life from birth to old age. Many parents will first notice the implementation of this act via the new "person centred planning" approach being rolled out to many Local Authorities for transition etc. 
http://www.legislation.gov.uk/anaw/2014/4/contents/enacted

Estyn - The Inspectorate for Education and Training in Wales. 

Common Acyronyms

ADHD: attention deficit hyperactivity disorder
ALN: additional learning needs
ASD/C: Autistic Spectrum Disorders/Conditions, includes Asperger’s Syndrome
ATR: additional teacher resource
BESD, ESBD or SEBD: Behaviour, Emotional and Social Difficulties
CoP: Code of Practice
DCD: developmental coordination disorder
HI: hearing impairment
MSI: multi-sensory impairment
MLD: profound and multiple learning difficulties
SpLD: specific learning difficulties, including dyslexia
VI: visual impairment 

Our Face Book group & other web links.
Group - https://www.facebook.com/groups/WalesHESN/
FB page - https://www.facebook.com/cymrualn/
Blog - http://cymrualn.blogspot.co.uk/
Email - cymrualn@gmail.com

Article by Steph Shobiye

#CymruALN

Starting Home Ed in KS3? Structured Approach Quick Start Guide.

Please don't go spending a fortune at first, it takes a while to suss your child's preferred learning style. We think the real burning need for expensive text books only comes when you hit the exam syllabus stage; and that until then most stuff can actually be gleaned for free or very low cost. Start with the free stuff and only make purchases when you are sure you actually need them. This will mean that hopefully you will have the funds available for any really critical things you may find your child needs further down the line such as private therapies. As an Elective Home Educator you will also need to budget for the exam fees later on to enter your child as a private candidate for iGCSE's etc.


The Home Education community often negotiates group discounts on things like specialist dyslexia software etc. We also swap, share and sell on learning resources to one another. So do ask in our Face Book group, before splurging out. For some specialist therapies and disability equipment etc we've worked hard to find sources of grant support wherever possible. For most things someone, somewhere will have found a way of accessing it more cheaply.
https://www.facebook.com/groups/WalesHESN/ - link to our group where you can ask! 
This is a core curriculum that you can add to, adapt and tailor to exactly meet your child's needs over time. It is intended to help you hit the ground running and avoid the common HE newbie mistake of spending a large amount on text books that just sit gathering dust on a shelf, only to disparately wish you could claw back those funds to spend on something your child really needs to aid their learning further down the line. With that in mind most of the resources listed below are totally free, and any resource that isn't has had to really justify being included. Almost all home educators benefit hugely from a broadband connection and a basic PC/lap top + printer. Click here for advice on how to keep the costs for this down. 

Maths 

At 11 I would stick with this course for maths as its free, until you need a specific exam board textbook later on. That keeps the costs down for one core subject. http://www.cimt.plymouth.ac.uk/menus/resources.htm

Science

This range of text books is really good for  KS3. very visual, fun and comes with an accompanying DVD for your PC. Check out the 2nd hand section of amazon before making your purchase as it's often available in excellent condition at a much lower price than brand new.
 http://www.amazon.co.uk/Explo.../dp/1405892463/ref=sr_1_6...
FREE practical experiments for this level - HE gives the opportunity to do much more hands on science than is often possible in classes of 30. Which is a huge benefit to many of our children who prefer a hands on learning approach.

 http://www.scholastic.com/teachers/article/40-cool-science-experiments-web


Do check out https://www.futurelearn.com/

A couple of great courses coming up in the next term or so we'd recommend

- basic science experiments 
https://www.futurelearn.com/courses/science-experiments

- the science of nutrition
https://www.futurelearn.com/courses/the-science-of-nutrition


Khan Academy is great for Science and maths. https://www.khanacademy.org/

English - Free again!

https://www.amblesideonline.org/curriculum.shtml
This is a fab structured resource. Most of the literary texts are available totally free through the site too. Gives a really solid grounding in English language and literacy. Incorporates History in a lovely way too - wonderful to read about how people really lived as its all interconnected so nicely. Amazon often do second hand textbooks for as little as a penny. You just pay £2.80 postage and 9 times out of ten the books are in near perfect condition. We've often had great success finding CGP textbooks this way.
Abesbooks is another place to find standard textbooks much cheaper than the RRP.
Need a FREE KS3 Poetry Course? We love this one from NI. Huge poetry teaching PDF for ages 12yrs plus. (Key stage 3 in Northern Ireland). This is a brilliant resource for older children and uses computer skills, research, poetry and reading comprehension. Really good.
http://www.nicurriculum.org.uk/docs/key_stage_3/areas_of_learning/english/Poetry.pdf

English - reading comprehension and analysis!
Very good resource!

Book review reports, reading comprehension templates, critical analysis templates.

http://www.keansburg.k12.nj.us/cms/lib02/NJ01001933/Centricity/Domain/798/Graphic%20Organizers.pdf

Modern Foreign Language

Duolingo is hard to beat. It's available for PC,and tablet and there is now a Welsh option
https://www.duolingo.com/

History 

This is a 42 part course on World History. Enough to see you through your first year of Home Education. Of course it's free and should be enough for your child to decide whether this subject interests them enough to continue their studies in this area. 

https://www.khanacademy.org/partner-content/crash-course1/crash-course-world-history


Geography 

This is a great site to begin your KS3 Geography. Field trips are so easy for us as home educators. Wales is a particularly good place for this subject given our natural environment and several HE groups take advantage of that. It's quite common to also study environmental management as well as geography to iGCSE and for children to take the Jean Muir award later on.

 http://geography.learnontheinternet.co.uk/ks3/index.html

This also seems like a good place to point out that most curriculum topics have a dedicated Face Book group chock full of learning resources and usually run by subject matter experts. This is the link to the Geography group, which is a particularly useful one. Again rather than rushing to Waterstones and spending a fortune, it's always worth asking in our own online group  if your ASD kid's current obsession with Astonomy can't be nurtured all the way to an iGCSE pass via cheap online resources. 

Internet Safety. 

Cyber Safety isn't yet part of the Welsh National Curriculum, so please don't assume your child is cyber savvy re their personal safety, because of what they've been taught at school. Most Home Educated Children quickly discover the amazing learning resource that is the internet and make best use of it. In order to keep them safe as they do so we believe quite strongly that it's worth taking the time right at the start of your HE journey to spend some real time on this subject.Parents! Do take a look at these cyber safety sites. Being clued up yourself is the best way to ensure our children and young people stay safe online. Our young digital natives are depending on us!

www.childnet-int.org

www.ceop.gov.uk

www.kidsmart.org.uk

www.thinkuknow.co.uk

Learning with minecraft - if yours is a gamer then make their time productive in terms of learning. There is a home education server we can give details about in our group (moderated). This site is used by teachers globally in lessons across the curriculum so is worth making a note of too
http://education.minecraft.net/resources/

Legal Stuff - here's a link to our quick reference guide for Home Educators in Wales. It's handy to save to your favourites in case of queries when dealing with officialdom. The vast majority of our members are Elective Home Educators.

KS4. 

It's worth noting our Face Book Group contains members at the extremes of the academic ability range in both directions, with early Uni entrants and those aiming to do foundation skills alike.  Not all our kids will take exams and we recognise that. Alternative opportunities to prepare for independent adult life are discussed in our Face Book group on a regular basis, as and when we come across them or develop new initiatives. We are currently in the process of compiling a list of Exam Centres across Wales that accept private candidates. Where possible we are enquiring about the possibility of access arrangements for candidates with disabilities. Welsh Exam Centres will be the subject of a blog post in the near future. 

Author - Steph Shobiye.
#CymruALN

Live online schools, tutors & MOOCS - updated

Live Online Schools – Primary

Lessons are live, which means they are scheduled for set times. Most providers will offer a month’s trial if you ask nicely.
Children are admitted at 9, the earliest that developmentally they can cope with the intensive focus and concentration needed to successfully participate in learning via this format.  If your child does not yet have the focus for learning this way, it may be worth waiting a few years and trying again. One of the joys of homeschool is that children can be allowed to progress naturally, rather than according to arbitrary targets.  It is worth noting that this learning format is best suited to structured or semi-structured families and is unlikely to suit completely autonomous families.
Some schools will admit children with additional learning needs, others are unable to cater for them.
At this level all schools will take children for single subjects or for the whole curriculum. Curriculum wise they start at UK Year 4/5.  One of the joys of Internet school is that it is easy for a child to accelerate or decelerate their studies, so a 12 year old can join Year 5 without being made to feel sensitive about it if that’s what they need academically. Another child might be accelerated in their favourite subject without fuss.

http://www,briteschool.co.uk  This aims to be a supplement to your own homeschooling programme, not a complete packaged solution.  It is aimed at keeping children up to date in the core subjects + a foreign language if desired. It is popular with ex-patriate parents who know they may want their children to rejoin the school system upon their return to the UK. To this end it offers preparation classes for the common entrance exam at 13+. Children join the class that best suits their academic ability, not their chronological age.   All aspects of the lesson are recorded, which is ideal for children who may wish to revise the lessons in their own time. This is a unique service, and ideal for some additional needs pupils. Fees for the core curriculum are approximately £333 per term. Modern Foreign  Languages are £47 a month.  The timetable of 3 mid-week afternoons a week is ideal for those who would like lots of long weekends free for family field trips/to attend hospital appointments etc.  The school is kept small in total numbers, which means staff know their pupils well. It is expected however that parents will provide adequate socialisation activities offline.

http://www.net-school.co.uk Offers a rigorous academic schedule, including Latin if required. Single subjects can be taken and the website is easy to navigate.  It can be considered a complete curriculum, so ideal for parents of bright children who want to hand over all teaching to someone else.  Lessons are spread across the week. Fees are approx £1000 term, or £180+VAT for a single subject.

http://www.firstcollege.co.uk This is a supplementary programme to your own homeschooling efforts, not a complete packaged solution.  This has a very nurturing ethos, and so can be an excellent choice for children who are nervous or healing from school bullying. Social activities are very tightly monitored, which may offer reassurance to a nervous child. The proprietor is a Pagan.  There is considerable flexibility as to which year group your child joins – very helpful for children with delayed or asynchronous development. Subject matter experts are recruited in favour of trained teachers, which means it may not be the ideal choice if your child intends to return to school at any point.  The common room is moderated and offers an opportunity for children who might have limited socialisation options (often for health reasons) to do so.  The school has a strict policy to keep total numbers small, which means staff get to know their students well. 
Fees are approximately £333 per term.

 Live Online Schools – Secondary 

Note that it is increasingly common for children to join at 14+ having previously been autonomously educated or mainstream schooled for support in obtaining their iGCSE’s.

UK

The choice of provider widens at KS3. Do check which exam board the school is aligned to so that you can verify that an exam  centre will be within reasonable travelling distance when the time comes. It is not unusual to be enrolled with different schools for different course options particularly at KS4. You’ll find that the providers do not mind. Some students even combine college and or flexi-schooling at this stage of their educational career.

http://www.Interhigh.co.uk. 
This is the current market leader and aims to replicate a comprehensive school online as a complete package. It enjoys the closest links to LA’s, some of whom fund children with a statement and additional learning needs to attend. The school works well with LAs for these pupils.  Lesson slides may be available in some subjects, but not recordings for revision. Offers double science and an extensive virtual social experience.  Single English award. You need to sign up for the whole curriculum. Single subjects are not offered in KS3/4 for those who only want to enroll in order to learn a MFL etc. . Children may join the school at 11+ Offers a good choice of subjects for A level. The school is now about 700 pupils strong, & you should be aware that the fee arrangements are quite inflexible, based as they are on a standard private school contract. Based here in Wales with their own dedicated exam centre. (Useful for those needing complex access arrangements). 

www.net-school.co.uk
See Primary providers. The Sciences are offered as single subjects. Is unusual in that both English Language and English Literature are offered as GCSE options.  Also offers Latin to iGCSE.  No modern language option at iGCSE. French and German offered at KS3. Possible to take single subjects. Children may join the school from 9+ onwards.

www.briteschool.co.uk
See Primary providers. Often accelerates students so it is typical to stagger GCSE’s. Offers common entrance exam prep as an optional module for 13+. Offers science as a choice of a double iGCSE award or as 3 separate subjects. Single English award. French, German and Spanish offered at iGCSE. History only offered as a recorded option a present (free to all enrolled students).  Pupils may choose between Foundation level and the Higher level Maths iGCSE options, which can be very helpful to some additional needs students. Fees approx £2500 per year. Children may join the school from 9+ onwards (though the occasional gifted 8 year old is admitted).  Offers the ECDL course in lieu of iGCSE ICT and a very limited range of A level courses.  It is also possible to enroll just for a single subject.

http://tute.com/virtual-academy/
Everyone we’ve spoken to has had high praise for this provider. Most people have been LA funded to attend. However fees are roughly competitive against Interhigh and Brightschool.

http://www.nisai.com/
A dedicated post 16 option!!!!!! Fees are approx £1500 per subject. Intended student intake is those whose SN’s or illness makes college attendance difficult. Most pupils are LA funded.

http://www.firstcollege.co.uk/
Models itself on an old fashioned village school in a virtual context. Prides itself on providing a nurturing environment so worth a look for anxious children or those in recovery from being bullied at school.  Based here in Wales which is very useful for exam centre know how!

http://www.redballoonlearner.org/Life-at-RBAir-(online-provision) For bullied children and school refusers. So far we’ve only been able to  locate LA funded users of this option and the end goal has usually been for eventual reintegration into the state system as a result

Pembrokeshire College Online http://online.pembrokeshire.ac.uk/

This provider offers a great range of A level subjects including the sciences. The Science A level courses are worth a special mention, as there is the facility to do practical workshops. They also run their own exam centre which is useful for those who may need access arrangements to accommodate disability or Additional Learning Needs. A small range of iGCSE & GCSE subjects are also on offer including Computer Science, which is often very tricky to locate an exam centre for here in Wales. Pricing is competitive against other providers. This provider is one of those that accepts LA funded pupils via their statement of special educational needs and works well with LAs. As an exam centre it is also very helpful for those pupils who need access arrangements. If these are required, as always you should aim to organise these 18 months before your child is due to sit the exam in question. 

Online tutorial services for Home Educators

To find experienced tutors of Home Ed Students who are fully clued up on the need to follow the IGCSE programmes, and how things work for private candidates etc we advise you to join this facebook group -  HE APPROVED ONLINE TUTORS
These use a variety of software solutions to connect learners with their tutors, the most common being Skype.  Some of the online schools also offer one to one tuition on a case by case basis via their own software.  This is the most expensive method of learning online but can be a useful avenue to explore if for instance no specialist dyslexia support is available in your area. It is also useful for some gifted students and those who might want to study a subject not readily available via more popular options.

We believe giftedness is an additional learning need so wanted to include providers that can cope with the advanced end of our spiky profile children. Briteschool is fab for acceleration in maths, science and a few other subjects. Now we have a provider on board for English and the humanities too.

www.dreamingspireshomelearning.co.uk Runs online courses for ages 11 and up for homeschoolers/educators all over the world. Using the Charlotte Mason method, I've designed 30 weeks of online webinars that work for both the US-style high school credit hours, and the UK's desire to prepare students for exams.  4 different courses in English for different literary periods, and have brought on board an OU tutor/former home-ed mum for Classical Civilization.  Run by a CIE examiner for IGCSE & A level. 

Online crammer courses for the CIE English Language 0500 exam (higher tier only). These are 8-session coaching courses which I've designed based on my experience as an examiner. I usually run one during the Easter break, but people are asking me to do one for this autumn, so it may be offered near the end of August. The website for that is here:

www.dreamingspiresrevision.blogspot.co.uk

The Open University 

The Open University accepts students from age 12 subject to a long list of caveats. Due to the developmental and emotional maturity required, it is VERY unusual for a student to be accepted below 14 years of age. Fees have risen rapidly in recent years, which sadly may remove this option from many Home schooling families box of option. It remains however a great alternative to A levels, or even mainstream University for some pupils.
At degree level it is worth noting that several UK Universities, (including Russell Group) are now offering distance or online learning at degree level. This may be the best route to obtaining a degree for some students with additional needs, especially those with sensory issues that may become overwhelmed in the traditional lecture Hall.

STATIC ONLINE LEARNING - MOOCS

Classes are delivered via a series of pre-recorded, audio, slide or video lessons. Assignments are submitted for peer review or marking by the lecturer.  Online forums provide the medium for class discussion. There may be thousands globally at anyone time studying a specific MOOC module so the format is by its very nature very impersonal.  So long as assignments are handed in by the deadlines MOOCs offer great freedom in terms of scheduling, so may be very convenient for families who wish to remain semi-autonomous and flexible in terms of their time.
The sheer range of breadth & range of topics offered means that if your child is suited to this format for learning, it is worth browsing the course indices every so often.  MOOCS are currently totally free, unless you require formal verification of course completion.
MOOCS alone should not be relied upon alone to gain entrance to College or University.  They are not a replacement for formal qualifications such as GCSE’s, NVQ’s and BTECs. No UCAS points can be awarded for completion. They do however show that a homeschooled child can learn in a structured manner, and are useful for extending subject knowledge. It makes sense if you feel you may want to demonstrate evidence at interview of extended learning in a topic to pay the extra for the certified or verified route on these courses in order to obtain the available certificate.
These certificates only provide proof of study and cannot as yet be used to accumulate UCAS points but it is perhaps worth the UK home ed' community lobbying?

 futurelearn – This is the Market Leading provider here in the UK, and is considered particularly valuable by UK home edders for its basic science courses. Certificates can only be issued in a child’s name at 14+, https://www.futurelearn.com/courses/upcoming

Edx.org  This site has only very recently launched a range of High School courses specifically aimed at the 14-19 year old age group.  Some of these courses can be certificated. We look forward to seeing how this initiative progresses. https://www.edx.org/

Coursera.org  Some useful courses here for parents to take on educational topics such as positive behavioural support (ABA) & dyslexia. https://www.coursera.org/

Khan Academy - an amazing resource chock full of help with maths, science and many other subjects. Well worth a look!  https://www.khanacademy.org/

PLEASE NOTE and THANKS

1. We can only list those providers we have found bone fide Home Educators willing to vouch for. If you provide a service please email cymrualn@gmail.com with the contact details of the parents of some happy Home Educating pupils that we can talk to. This is the only way to be included in future lists. 
2. We update this list in July each year so if you are a Home Educator using a provider not listed here - do sing their praises to us as we do our best to update the list periodically. 

3. All prices are approximate only and you should check with individual providers before selecting your final choice as they are subject to change. 

4. Also please note that the vast majority of providers expect you to make your own exam centre arrangements. Often it's easiest to work backwards and locate an exam centre before choosing a provider. Where relevant we've listed those Welsh providers who may be helpful due to their local knowledge, or because they run their own centre. There's also lots of help available for sourcing local exam centres available in our Face Book Group via our members. Work is constantly ongoing to persuade more existing centres across Wales, to accept private candidates and specifically those who need access arrangements due to additional learning needs at a reasonable cost. 

Author - Steph Shobiye

In the pipeline - ischooldigital - a specialist Welsh online ALN provider. We are watching this closely and will update as soon as we hear more. 

Dreaming Spires - will be running geography, history and biology courses from 2017.
Arts Award for Cymru ALN group members 2017. 

Common Terminology & the Law in Wales

SEN = Special Educational Needs. With the advent of the Additional Learning Needs Bill the phrase Special  Educational Needs has been superseded for all but the still current SEN CoP.  Thus instead of SEN departments we now hear the term ALN department. In schools the job title SENCO is currently being replaced by ALNCO (Additional Learning Needs Coordinator).  

ALN - Additional Learning Needs. You'll hear this phrase used more and more as local authorities begin to prepare for the anticipated rollout of new legislation in 2018. The two phrases should be considered interchangeable during this transition phase. 

Current SEN Code of practice - The SEN CoP This document should be considered every parent/carer and education professionals main reference as it clearly outlines what the Welsh Government considers to be best practice.  
http://learning.gov.wales/docs/learningwales/publications/131016-sen-code-of-practice-for-wales-en.pdf 

EHE - Self-funded programmes are called EHE (Elective Home Education). No monitoring. Parents who are funding their child's education themselves already know how well their children are progressing. The parents assume full legal and fiscal responsibility for the education a child receives. Many parents who feel their children have been failed by the system, resent attempts to monitor them by that same system. Elective Home Education Government guidance here.  We keep a list of local EHE groups in our online support group for newcomers to enable newcomers to Home Education to be able to go and meet their local group/s.

EOTAS - LA funded home programmes are commonly referred to as EOTAS (Education Other Than At School) in official documentation. The Local authority is responsible for the Education be provided. This group of pupils includes those in Hospital schools & PRU's as well as those receiving Home Tuition from LA tutors,  ABA or II programmes in the Home environment. Monitoring of the LA funded provision is right and proper to ensure taxpayers money is spent correctly. Welsh Government guidance here. In many areas these services are under threat due to funding cuts. 

It is incredibly important for ALL parents of children to be aware of the very clear difference in status between EHE & EOTAS, both in terms of funding expectations, and their own duties under the law.  

FORCED Home Educators - This is a grey area which covers children who are not currently in the school environment for a variety of reasons from bullying to illness and lack of support at school for special needs. Legally children in this group may fall into either of the two categories listed above. This group has become and increasing phenomenon in recent years as sadly cuts to NHS & Education services have begun to bite. The shortage of specialist teaching facilities is a contributory factor, as is the overload on child mental health services at present.  It is in everyone's interest to ensure that this growth is halted. This term is used a lot in Home Education support circles but we'd really rather not have to!
Off-rolling is a term often used to refer to illegal exclusion of ALN pupils and if this happens to your child we'll happily put you in touch with organisations that can help. 

FLEXI - schoolers. There are children who spend part of their week in school and part of it being educated at Home. Permission to do this is at the discretion of the individual Head Teacher so arrangements vary, and the child remains on the school roll.

Access to Education and Support for Children and Young People with Medical NeedsUseful for parents trying to avoid joining the ranks of forced home http://learning.gov.wales/docs/learningwales/publications/131016-access-to-education-for-children-with-medical-needs-en.pdf

Social Services and Wellbeing Act (Wales) 2014 which replaces part III of the existing Children's Act from April 2016.  This is a crucial change of approach from "welfare" to "well-being" & now covers whole of life from birth to old age. Many parents will first notice the implementation of this act via the new "person centred planning" approach being rolled out to many Local Authorities for transition etc. 
http://www.legislation.gov.uk/anaw/2014/4/contents/enacted

Estyn - The Inspectorate for Education and Training in Wales. 

Common Acyronyms

ADHD: attention deficit hyperactivity disorder
ALN: additional learning needs
ASD/C: Autistic Spectrum Disorders/Conditions, includes Asperger’s Syndrome
ATR: additional teacher resource
BESD, ESBD or SEBD: Behaviour, Emotional and Social Difficulties
CoP: Code of Practice
DCD: developmental coordination disorder
HI: hearing impairment
MSI: multi-sensory impairment
MLD: profound and multiple learning difficulties
SpLD: specific learning difficulties, including dyslexia
VI: visual impairment 

Our Face Book group & other web links.
Group - https://www.facebook.com/groups/WalesHESN/
FB page - https://www.facebook.com/cymrualn/
Blog - http://cymrualn.blogspot.co.uk/
Email - cymrualn@gmail.com

What is SUDEP?

Rosie Logan Edwards

SUDEP is when someone who has Epilepsy dies during or as a result of an epileptic seizure.

It is more vulnerable in people who suffer from nighttime ‘sleep seizures’, ie having a seizure whilst already being asleep or when in recovery from a previous seizure and is still in the unconscious ‘seizure sleep’ stage.

I had Epilepsy as a child and my son was also diagnosed with it age 4.

Seizure sleep is the term I use to describe that period of time when after having a Grand Mal (Tonic Clonic) seizure, when the period of the stiffness and the jerks have passed and the individual is unconscious and very very still, like being asleep but not a normal regulated sleep, there is no pattern to their breathing and they are abnormally still. In fact it is near impossible to hear him breathing when in this seizure sleep, and I would always look for signs of the tummy rising and falling to know that he was still breathing.

When this happened to my son I would constantly watch him, studying his entire body looking for more possible jerks or twitches, making sure I didn’t miss any sign of anything, he would be so still and so quiet but I would continue to talk to him and tell him that ‘everything was ok’ and that he can ‘come back now sweetheart’, ‘everything is alright’, gently reassuring him, weather he could hear me or not I do not know, but in case he could then I wanted to make sure he was reassured.

As best as I could I would time both the seizure and the ‘seizure sleep’ that followed.

I could always identify when he passed from the seizure sleep into standard regulated sleep, he would take a slow, deep inhalation of breath and he would start to move again and do the usual movements of settling down into sleep again, his breathing would then be more recognisable as regular standard breathing during sleep. The ‘seizure sleep’ lasts approx 10 mins, but this can vary in different people.

Until the seizure had fully passed I would not leave my sons side, not for anything, and even when he when he was fully awake again I would still make sure that someone was with him if I left the room. They must never ever be left alone as another seizure could strike at any time.

I could still see the affects of the seizure for up to 10 days after the seizure had passed, it would always affect his balance, coordination and memory, always those three things, and even when two or all of those things are not quite right for him I am aware that he may have had a seizure without me realising it, this prompts me to provide constant monitoring and checking up on him, which at age 12 he sometimes gets fed up, but I cannot help but do it, I would rather him be a bit fed up with me than him be in danger from a seizure that im not aware of, as I am well aware of the dangers that can so easily happen if he was not supervised or had appropriate help.

My son would also have 2 seizures close together within 12 hours, always 2. This gave me rise to believe that his seizures were habitual after his then consultant telling me they weren’t.

Epilepsy IS life threatening and it kills more people than we realise.

I can remember when I was at high school, a girl’s mum had died from having a seizure, the poor lady didn’t recover from a particularly bad seizure, and since then I have known of others, both in my community, people who have told me their knowledge of it happening and as well in the celebrity world. Regardless of what kind of Epilepsy you have or how the seizure was induced, the danger is that anyone who has a seizure weather they have had Epilepsy diagnosed or not can die from a seizure. It is that real.

Epilepsy can also run in families (which is not the same as being hereditary, so I've been told).

I had Epilepsy when I was a young child, it was totally uncontrolled and on one particular bad day my mum remembers that I had about 15 Grand Mals (Tonic Clonic) seizures and she was convinced that I was dying. She just didn’t think that I would come out of it.

.

I am always astounded when I see an Epilepsy awareness video or piece of information and not once does is it mentioned that it’s a life threatening condition, or the mention of SUDEP.

This is a very real danger and people need to be more aware if it.

On 3 separate occasions all within 8-10 days ,I woke to find my son blue, cold, and not breathing and I had to revive him. This is a very scary situation to be suddenly faced with, and if I wasn’t aware of SUDEP or what to do, then I wouldn’t have known how to help him. Everyone HAS to be made aware, and everyone as standard should take a basic first aid course. This is crucial and should be offered to all parents and carers of someone with Epilepsy. Incidentally….ever since the last time I found my son like this, he has not been able to sleep through the night and he is now nocturnal, he simply cannot sleep and doesn’t get tired like neurotypical children. We fully accept and respect this and we as a family have adjusted to his needs so that he is always supported and fully reassured. But as a result of that last ‘sleep seizure’ I truly believe that whatever happened to him, it affect the sleep regulating area of his brain. He has never been a great sleeper anyway, but the difference between before and after this last ‘sleep seizure’ was so dramatic that I truly believe this is what happened.

My grandfather was a doctor and I was once told that there are two main groups of how one has/acquires Epilepsy, 1, you are born with it, or 2, you have acquired it ie as a result of something else, like an injury, accident, as a symptom of something else ie a tumour, or because of taking strong substances of any kind ie other medication, recreational drugs etc.

There is more chance of growing out of childhood Epilepsy than there is if one develops it during adolescence or when fully grown.

Both me and my son were born with Epilepsy, one cannot compare the two as it is always unique to that individual person.

There needs to be more awareness on SUDEP.

Professionals I have encountered over the years right up to recently, as well as family members, simply haven't heard of SUDEP.

Now I carry spare copies of information that I have printed off from the internet so I can educate people if ever it comes up and when they need to know, and also to protect my son (this is vital) as if he was aware that Epilepsy and in particular SUDEP is life threatening then he would just freak out, it would have a detrimental effect on him and he would be so anxious and stressed that it would likely cause a seizure, so handing over a leaflet or a piece of information is a lot easier than having to try and explain to someone what SUDEP is while whispering or using code words, which often gives totally wrong information and it would severely affect my sons confidence and it would really emotionally upset him if he heard me whispering about him, so handing over basic information is calm, quick and saves stress and time.

These are some good links, but really, there is lots of info on the web now about SUDEP.

https://www.epilepsy.org.uk/info/sudep-sudden-unexpected-death-in-epilepsy

http://www.youngepilepsy.org.uk/about-epilepsy/living-with-epilepsy/sudep.html

http://www.cdc.gov/epilepsy/basics/sudep/

A must read as closely linked with Epilepsy

http://www.bbc.co.uk/news/health-35833997

Any questions at all please do not hesitate to contact me.

Rosie Logan Edwards (note:- if you aren't a member of our Face Book Group then send an email to Cymrualn@gmail.com with your contact details and we'll pass the message on so Rosie can respond to your queries directly)

EPILEPSY PASSPORT 
Useful for appointments, trips and lots more besides. This is a link to the template & guide to creating a specialist Epilepsy passport developed by the RPCH http://www.rcpch.ac.uk/improving-child-health/quality-improvement-and-clinical-audit/epilepsy-passport/epilepsy-passport/