Sayonara, School Action and School Action Plus

Debs writes….

senreform3The Government is proposing to replace the current categories of School Action and School Action Plus with a new single early years and school-based SEN category.  This will mean that your school of choice will have to comply with clear guidance from the Government on the appropriate identification of pupils with SEN.  This guidance will include a clear process for identification and assessment of pupils, setting objectives for pupils, reviewing progress and securing further support.  This will be set out in the new SEN Code of Practice  – an indicative draft of the Code of Practice (COP) is already available.

Take a look at the Code Of Practice, specifically Section 5.4 looks at Identifying Needs, 5.5 looks at The Four Primary Areas of SEN and 5.6 covers Additional SEN support in settings.

Tania and I have written about the draft Code of Practice in previous posts which can be read here and further views here

One paragraph in 5.6 leaps out to me as a parent :

“It is the responsibility of educational settings in consultation with parents, and, where appropriate, the young person, to decide whether a child or young person requires Additional SEN Support. They must ensure that children and young people who receive Additional SEN Support have an identified SEN and that their progress has not been hampered by weak teaching or poor attendance”

Does your school consult with you?  Do you know now if your child is School Action or School Action Plus?  Did your school involve you in the decision to place (or remove) your child in this category?  Do you think your school will admit that your child’s progress has been hampered by weak teaching?

The Ofsted review of SEN (2010) found that nearly one fifth of the schools visited suggested that they provided additional SEN support when, in other schools, such provision was regarded as the norm.

Therein lies a huge part of the problem.  We all know there are schools where the staff will do all they absolutely can to ensure your child reaches their full potential and then there are schools which prefer to lay the lack of development at you and your child’s feet.  I am very fortunate in that all three of my children are now in schools that take the former stance and not the latter.  However, I do personally know of schools where there is not a chance in a million that they would ever admit they were perhaps the problem.

Ofsted reports do not always reflect the true representation of SEN in schools – we all know of parents asked to keep their child home for the day Ofsted are arriving or their Ofsted questionnaire somehow not making it home.  Would these schools be holding up their hands to say “oh sorry, some of our teaching is a bit weak”.

The proposed removal of School Action and School Action Plus is part of the Children and Families Bill.  After considering the Ofsted review of SEN (2012) and the Lamb Inquiry (2009), the Government believe the current system emphasises labelling children’s need according to the support  needed rather than the outcomes sought for the child and can lead to children being unnecessarily labelled as having SEN.  It also found that ‘there is a risk that the use of the SEN label itself leads to lower expectations or less vigorous intervention.

beaconThe Lamb Inquiry (20091) reported that SEN can sometimes be ‘unhelpfully collated’ with falling behind, and this may have contributed to the growing number of pupils at School Action and Action Plus.   Did you know that at the end of Key Stage 2, August-born pupils are 60 per cent more likely to be identified as having SEN than September-born pupils?

The Government believe that removing the need for a label of SEN, will challenge schools to improve the quality of teaching and learning for all pupils but what do you think?

Once again, we come back to the culture change needed.  The new Children and Families Bill and indicative draft Code of Practice do not totally reflect the aspirational Green Paper that so excited so many of us.  However, it is still a draft and as a mum, my main concern as I read through them is this tells us what the goal is but not we actually get here?”

What about the very basic communication to families and practitioner of the proposed changes.  If we can’t get that right, how do we propose to get all of the changes right?  Have you heard about the changes in your LA?  Take our quick survey and let us know – we will be sharing the results with the Department for Education.

There will always be great schools, management, LA Officers and staff (our Beacons of Good Practice) but there will also always be poor schools, management, LA officers and staff.   As long as that fact does not change, then does it matter what they call the provision of additional SEN support in settings?  What do you think?

Dr Tony Attwood’s views on Asperger’s and girls

Tania writes:

I was recently lucky enough to attend a conference given by both the world-renowned expert in Asperger Syndrome, Dr Tony Attwood and Dr Carol Gray, the inventor of the social story.

Attwood

Tania with Dr Tony Attwood

The conference was organised by Freemantles School, a special school for children with autism spectrum disorders in Surrey. I’m planning to write a post about Dr Gray’s presentation another time, but this post will focus specifically on one of Tony Attwood’s themes: Asperger’s and girls.

Tony Attwood has already written a book about the subject, so if this article piques your interest, you might want to buy the book to delve deeper (link at end of article).

As you know, I have two Aspie sons and have long suspected that I also am an closet Aspie (though my husband would counter that there’s nothing ‘closet’ about it!). After listening to Dr Attwood’s presentation, I could have cried – in so many ways, he was describing me!

It has been generally accepted that the prevalence of Asperger Syndrome in girls is about 1:4 of that found in boys, but Dr Attwood believes this to be more like one girl to every two boys.

The reason for the misconception is because girls with Asperger Syndrome present very differently to boys with the same condition and “fly under the radar of a diagnosis”.

Whereas boys are more often diagnosed in their primary years, for girls it is not until they reach secondary school that the difference becomes more apparent, because girls’ coping and camouflaging mechanisms and their skill at imitating mean that they appear to assimilate with their neurotypical peers.

The route to diagnosis also differs from that of boys and comes more often after a secondary disorder is diagnosed in adolescence such as Anxiety Disorder, depression, Borderline Personality Disorder, an eating disorder (as a method of control) or selective mutism (because they are overwhelmed).

Then, once a detailed developmental history is taken by a clinician, the diagnosis of Asperger’s becomes apparent (if she is lucky enough to have a knowledgable doctor!)

While her peer group moves seamlessly from childhood friendships into teenage talk, conversation and cliques, the Aspie girl finds herself internally cast adrift on a sea of choppy water and hidden whirlpools. She is unable to read the unspoken rules and meaningful glances that are so important to fitting in – though she often manages to cope by copying what the other girls do.

“Sometimes they do it so well that you wouldn’t believe it until the mask falls”, Dr Attwood says. He described the profile of ability in girls as:

  • Observing and trying to understand before the make the first step
  • Reading fiction or watching soaps to learn about inner thoughts and feelings
  • Decoding social situations in doll play and imaginary friends
  • Apologising and appeasing for social mis-steps
  • Being a chameleon

Aspie girls, Dr Attwood said, learn how to adopt a persona for different situations and they have learned to act so well that many affected girls say “They don’t know the real me”. The drawback of this chameleon tendency is that it can lead to depression.

Girls with Asperger’s can suffer intense fear of rejection, particularly surrounding their ability to make, but not keep, friends. They often have one friend who provides guidance and security.

I myself remember the isolation when my one friend was off school and the sheer terror at the thought of approaching other groups of girls, not knowing how to approach them or what to say. Would anyone have guessed that to look at me? Of course not.

And while fitting in at primary might be easier for girls, when they hit adolescence and they find that conforming to social convention goes wrong more often than right, the pendulum, Dr Attwood says, can often swing the other way.

This is sometimes demonstrated by the visible rejection of everything they feel they are not good at, i.e., being one of the in-crowd or the “popular girl cliques” and choosing to wear black clothes, tattooing, piercing, and sometimes, more worryingly, falling into promiscuity or the use of drugs.

For me, this is the girl saying, “You don’t want me? Well I don’t need you either; I can go my own way.” It is a self-preserving decision not to compete against odds stacked against her.

goth girlLinking up with other, similar ‘alternative’ people can bring friendship. Again from my own experience, I had a group of friends when I was 17 and 18 who were all a bit different in their dress and/or attitudes. They were mainly male. The best thing was, they accepted me, were happy to hang around with me and most of all, were not judgemental.

But Dr Attwood explained that social situations also bring other challenges for Aspie girls such as “social exhaustion”. Social interaction and the constant state of alert needed to sustain the “mask” is physically and mentally draining and requires periods of solitude to recover. Likewise they avoid “needy” people, only call people when they have something to say and prefer online communication which is, of course, completely controllable.

If you are the parent of a teenage girl with who has (or who you think may have) Aspergers, it is also important to be aware that they may perceive using their sexuality as a way to be popular, which as we all know (or know now we’re older) is never a good idea and is rarely successful at making female friends.

They are not good at character judgements and so may leave themselves at risk of what Dr Attwood calls “relationship predators”, who can smell vulnerability a mile away.

So what can be done to ensure that girls affected by AS benefit from early diagnosis? Well there is some good news: Dr Attwood has developed a new set of diagnostic criteria that is currently undergoing evaluation and that, when implemented, I believe will revolutionise the field and enable more girls and young women to access the help they need.

For more information about Dr Attwood, you can find his website at http://www.tonyattwood.com.au and his book about Asperger’s and girls here: Asperger’s and Girls

Echolocation (aka Dolphin Boy)

Deb writes..

Some of you may have read a report this week about the use of echolocation in blind children.  In the article, it states “New research from the University of Southampton has shown that blind and visually impaired people have the potential to use echolocation, similar to that used by bats and dolphins, to determine the location of an object.”

As you will know my youngest son is visually impaired and in April 2010, we worked with Daniel Kish from World Access for the Blind.  We had been introduced to Daniel via a lovely lady called Sarah from Common Sense (a parent led charity supporting and empowering parents of children with VI in the UK).  We had approached Sarah as we wanted J to be using a cane but here in Kent, the practice (at the time) was to introduce canes when a child was 7 or 8.  However, me being me, I had researched the use of canes for hours and chatted to other parents across the globe – thank goodness for Facebook – and I wanted J to have a cane much earlier.  Common Sense loaned us a cane and Sarah introduced us to Daniel Kish as he recommended using a longer cane than was current recommended here.  The general practice here is to provide a cane which measures from the floor to the user’s sternum whereas Daniel advocates using a cane which measures from the floor to the bridge of the user’s nose.

Jamie caneWe were very fortunate that Daniel would be in the UK shortly after we contacted him and we arranged for him to spend three days with us.  Daniel is best known for his work using echo-location and we had our first introduction to it when Daniel arrived.  I was amazed to watch this man (with no vision) walk confidently around our home and the local area.

We spent the first day in the local park, walking along a long path which led to a fountain.  Daniel explained how using the sound of the fountain as a target for J would help him walk independently – yes, I was the mum who always held his hand.  Along the path, there was a row of trees and then a large open space.  Daniel explained to J that using a small clicking noise would help him know when the trees were around him and when it was the open space.  I am sure we must have been a very entertaining sight in Kent that day, Daniel and J with their long canes and me with my eyes closed, making clicking noises as we walked along.    But do you know what?  It really works.

You can try it yourself – sit in a quiet room (probably best once the children are at school) and close your eyes.  Hold your hand in front of you at arms length and make a clicking noise; then move your hand closer to your face and repeat the clicking noise.  You will hear the difference.  When an object is closer, the sound is louder and deeper.  You can even do this using a wall in the house – close your eyes as you walk slowly (and carefully) towards a wall and click.  As the wall gets nearer, the sound gets louder.  Then walk towards an open door and hear the difference.

We spent the next two days with several of the practitioners involved in J’s life.  His mobility officer, his VI play therapist, his nursery staff and another mum of a child with VI came along too.  It was fascinating for me, as the wealth of knowledge in my house was just outstanding.  As a mum, it was like a Masterclass on all things VI.

Daniel spent time explaining to J how to differentiate size with the clicks.  This involved lining up several glasses, bottles etc and asking  J to tell us which was the largest, smallest, plastic etc.

jamie homeIt was three intensive days but three days that changed a lot of what we did.  J decided that clicking wasn’t for him so he uses his voice.  He is my son and like me, he likes to chat and if anyone has met me and thinks I talk a lot, they need to meet him and realise I am a rank amateur in comparison.  Due to the fact that he is still a child and less than 4′ high, his voice is a great navigation tool for him as objects are still very large around him.  Cars and garden fences are large in comparison to him so this works well for now.

We are now working on the clicking more, as we appreciate that as he gets older, the talking may have to reduce in quantity (or maybe we are just hoping).  We will spend time out as a family and often we all click just to encourage J to do the same.  We are so used to people staring at us as a family that we no longer have any worries about how we are perceived by others.

The local and national press covered the story and J became known as the Dolphin Boy.  Sarah from Common Sense had worked with Daniel and her son was known as Bat Boy.  The media coverage was quite fun to do ; it really helped to raise awareness and of course, I got to sit with Ben Shephard on the GMTV sofa.

You can see the BBC video here and World Access for the Blind have several links to other coverage on their site

Labels: Love or Loathe them?

Deb writes…

Are labels a help or hindrance?  Do you love them or loathe them?  Do they change the way you or your child are seen?  Do they change the way you or your child are treated?

What about the labels given to the parents?  Oh yes, we all know they happen.  I asked a group of friends what labels they had been given by family, friends and practitioners and if they thought they impacted on the way people interacted with them.  Some of their responses made me genuinely laugh out loud but some were just a touch too close to home.  So what labels are parents given – do you recognise yourself in any of these?

Labels c. SNJThe Bubble Wrap parent.  Also known as a Cotton Wool parent.  This parent is judged as being too protective, hindering their child’s development.  They are seen as not allowing their child to experience life or not allowing their child to take normal risks.

The Bolshy Demanding parent.  Also known as the Rottweiler parent.  This is the parent who is educated and knows what the standards for services should be.  This is the parents who refuses to take “no” as an answer; the parent who will stay up all night reading the Education Act or the Equality Act so they can challenge decisions made.  This is the parent that the good practitioners admire and the bad practitioners detest.

The Competitive parent.  Also known as Oh no, here they come parent.  This is the parent that other parents dread bumping into.  The one who wants to constantly tell you just how much harder it is for them than you.  The one who makes other parents walk away from support groups believing they don’t belong there as their child isn’t disabled enough.

The Coping parent.  Also known as the Brave parent.  This is the parent who, from all appearances, seems to be dealing with everything perfectly.  They just get on with it – or so it would seem.  This is the parent who never asks for help and rarely, if ever, complains officially.

The Helping parent.  Also known as the Hindering  or Controlling parent.  This is the parent who supposedly hinders their child’s development by helping them too much.  The parent who will do “things” for their child instead of allowing their child to learn to do it themselves.

The Neurotic parent.  Also known as the Over Anxious parent.  This is the parent who looks for problems that don’t exist.  The one who refuses to accept “they’ll do it when they are ready”, the parent who thinks their child is not developing at the expected rate.

The Unengaged parent.  Also known as the Hard to Reach parent.  This is the parent that doesn’t access services, doesn’t respond to surveys; the parent who doesn’t always show up for appointments.

SuperMumAnd let’s not forget everyone’s favourite – the Special parent.  Also known as the Super Hero parent.  This is the parent who  gets told   “I don’t know how you do it”, “I think you’re amazing”  “I wouldn’t be able to do what you do” and the ever popular “only special people get special children”.

So which label fits you?  If you are anything like me, then you will have heard most of these at one time or another.  Usually I am known as the bolshy, demanding rottweiler (and yes, I was actually called that) and the coping parent.  Oh, and of course, the “Special” parent.  Which means that when I find myself having a bad time and not coping, no one quite knows what to do with me.  I had been put into a lovely little box and I fitted in there nicely – how dare I come out of it!

Often, this is what happens with our children.  They are given a label and society/family/practitioners all have different expectations of what that label means.  For example, Autism can mean “rain man”, “no eye contact” or “just naughty” depending who you speak to (and how your child presents at that particular time) but as any parent will know, our children are individuals and have their own personalities.  They also have good and bad days – why should a label change that?

We often label practitioners.  Supportive, waste of time, self-interested, my life-line, pen-pusher and the list goes on.  How often though, have you had met a practitioner and thought they were fantastic, only for a friend to be shocked because their experience had been very different?  Does that mean practitioners are individuals, have their own personalities and have good and bad days too?

So, if this applies to our children and to practitioners, then obviously this means we too are individuals with our own personalities.

Why should a label change that?

Today is Pathological Demand Avoidance (PDA) Awareness Day

The PDA Contact Group have guest written a post for us – if you are experiencing this with your child, please get in touch.

PDA is a very unknown, rarely spoken about and unrecognised ‘Autism Spectrum Disorder’.  The condition was first recognised in the 1980’s by Professor Elizabeth Newson .  PDA has always existed but it was Newson who first saw the striking similarities between these groups of children and proposed that there was sufficient evidence to warrant the inclusion of PDA as a separate sub group within the ‘Autism Spectrum’.

If you would like to learn more about PDA please click on the link here below.

It is vital that PDA becomes more recognised and diagnosed by clinicians the world over.  Across the UK diagnosis of PDA is still very patchy because it is only recognised in a few Local Authorities.

Attachment-1 At the moment many children are described as having PDD-NOS (Pervasive Development Disorder Not Otherwise Specified), A Typical Autism or Asperger’s along with a host of co-morbid disorders including Personality Disorder, ADHD, ODD, Attachment disorder or simply referred to as just being naughty leading to parents being accused of poor and ineffective parenting.

None of these currently used terms accurately describes or provides parents with the correct understanding or strategies that at PDA label does.  One label, one diagnosis, one profile and one set of strategies and handling techniques, now doesn’t that make more sense than a montage of ill fitting ones?  The National Autistic Society (NAS) and the AET both recognise PDA. It is about time that PDA is recognised throughout schools, practitioners, therapists and the wider community and by organisations such as NICE.

Correct diagnosis essential

The diagnosis of PDA provides parents with the correct profile for their children and sign posts them to the correct support groups and strategies.  This is vital for the emotional well-being and long term prognosis for these individuals.  A collection of ill fitting labels that are mashed together to try and describe the complexities of this child are unhelpful and do not provide parents with the correct sign post.  Early diagnosis, recognition and intervention can lead to a much more successful outcome for these individuals.

There is currently a huge surge from parents and a handful of professionals who are desperately campaigning to raise the awareness and profile of PDA.  Recognition and numbers are growing and PDA is really beginning to snowball with more and more parents joining the PDA support groups and demanding the correct support, help and diagnosis from their local authorities.

The time for change, recognition and respect for parents who do such a wonderful job raising their children, with next to no support from many of the professionals involved has arrived.  The time for change is now and even if PDA is not in a diagnostic manual that doesn’t prevent any one who is a professional from researching the information that is available, having an open mind and seriously considering if any of children that you come into contact with would benefit from the diagnosis and strategies that PDA offers.

New resource page

The following Resource page, very kindly compiled by Graeme Storey, is a one stop shop for everything that you need to know about PDA.  If you are the parent of an ASD child who just doesn’t appear to be typical of an ASD presentation, the parent of a child with extremely challenging behaviour or if you are a professional that is willing to be open- minded and explore the concept of PDA then please click through to this link.  You will not regret it and with an open mind you could transform lives.  The parents and children that follow in my footsteps must not go through the hell and turmoil that Mollie and I have experienced on our journey.

The PDA Contact Group is our flagship forum and group but they desperately need funds to become a registered charity.  When they become a registered charity they will be able to apply for much needed grants and funding.  Long term we are hoping that the PDA Contact Group will be able to update their website, grow and evolve in line with the increasing amount of members and awareness, provide parents and professionals with more support and information and eventually become, to families affected by PDA, what the National Autistic Society is to families affected by Classic Autism or Asperger’s.  Please show your support to the PDA Contact Forum by making a small donation, details can be found here.

Take the SEN reform awareness survey and grab a chance to win!

Debs writes...

sen reform special needs jungleOver the past 12 months, we have received a deluge of questions and queries about the SEN reforms.  From this, we can only assume that the word is not getting out to parents (or practitioners) about the changes that are coming.

As we don’t like to assume anything (the words “ass” “u” and “me” spring to mind), we wanted to find out exactly how much you do know about the  SEN reforms including the proposed Education, Health & Care Plan, the Local Offer and Personal Budgets.

We have put together a survey – SEN Reforms: How informed are you?

Please take a few minutes to let us know what you know.  There is the option to add additional comments if you wish to some of the answers, but this is not required. We just know that many of you have a lot to say!

Anyone completing the survey has an opportunity to enter into a prize draw to win one of five copies of the E-book version of Tania’s “Special Educational Needs – Getting Started with Statements“.  You can download it in most formats or PDF if you don’t have a e-reader or app.*

We will publish the results along with posts answering some of the questions.

Please share the survey with as many friends and colleagues as possible – it would be really good to get a national view.

Access the survey in your browser here or go to our Facebook page and take the survey there

 

*Make sure you enter your email address to be in with a chance to win. 

Ebook winners will be chosen at random after the survey has closed at 5pm on 12th June 2013 and notified by email and sent a single-use only download code for the ebook from Smashwords. You may, of course, donate your winning code to someone else instead of keeping it for yourself, but it is only valid for one download. The ebook may not be transferred to anyone else after download.

Is this ASD research a potential game-changer?

oxytocinThere is new research and findings about causes and potential therapies for autism every week, but the following caught my eye in particular. I’ve reproduced a section below and you can link through for the remainder.

The following article snippet is from Medscape Medical News reporting from the 12th Annual International Meeting for Autism Research (IMFAR)

 

The research has found that intranasal oxytocin appears to normalise fixated or restricted interest, a core deficit in autistic spectrum disorder (ASD).

This expands the spectrum of normalising effects now being reported for intranasal oxytocin, essentially “completing the picture” of how the neuropeptide ameliorates the 3 key distinguishing features of ASD.

“In autism, there are 3 basic deficits — social communication, repetitive behavior, and fixated or restricted interest, where children get fixated on a particular pattern or sensory stimulation and have difficulty paying attention to other, more socially relevant cues,” Lane Strathearn, MD, PhD, assistant professor of pediatrics, psychiatry and behavioral sciences, Baylor College of Medicine, Houston, Texas, told Medscape Medical News.

“So this is the first time that this particular aspect of autistic behavior has been examined in relation to oxytocin, and we’ve shown that oxytocin has some effect on all 3 aspects of autism behavior, including now fixated interest.”

The study was presented here at the 12th Annual International Meeting for Autism Research (IMFAR).

You can access the rest of this article on Medscape here although you may need to register for free first.

When you’ve read it, do come back here and leave your views – is it just more of the same or do you think this is a potential game-changer?

 

Special Needs Jungle Drums!

Some great stories, news and blogs from the last week, curated from us, just for you.

  1. This is next week – so still time to mark the week!
  2. Congrats to Debs at Aspie in the Family…
  3. An interesting first hand account.
  4. Congrats to Renata and Swan UK on their first birthday
  5. A lovely post from Susan
  6. Get ready to expunge the word Asperger’s from your vocab! I’m off to a workshop on Monday with Tony Attwood & Carole Gray and I’ll be asking him about DSM V categorisation – will he need to change his book title?
  7. A very interesting article, not to be missed.

Want to know what SEN, AAC, SALT, etc st

Want to know what SEN, AAC, SALT, etc stand for? @kent_peps have a new SEND glossary http://ow.ly/kTo7y

Making the Disabled Children’s Charter a health priority

As you are hopefully aware, the beginning of April saw a massive shake-up in the NHS and the creation of GP-led Clinical Commissioning Groups as well as Health and Wellbeing Boards.

The Health and Wellbeing Boards bring together key leaders from the local health and care system to develop a shared understanding of the health and care needs of their local communities and how to address them. They are intended to drive local integration between health, social care and wider partners and reduce health inequalities.

EDCM logoBut with the many priorities that these new bodies will have, the charities Every Disabled Child Matters and The Children’s Trust, based at Tadworth in Surrey have launched our Disabled Children’s Charter for Health and Wellbeing Boards to ensure that children with special needs, health conditions and disabilities stay at the top of the agenda.

Because these children often need to access services from across the spectrum of health and care and specialist education services, they are especially vulnerable to suffer the effects of a lack of integration and cooperation between the providers of these services. This can lead to their needs not being adequately met or their families having additional financial burdens placed upon them.

charter_coverThis is why these two fantastic charities are calling on all the England’s Health & Wellbeing boards to sign up to the following seven key pledges:

By [date within 1 year of signing the Charter] our Health and Wellbeing Board will provide evidence that:

1. We have detailed and accurate information on the disabled children and young people living in our area, and provide public information on how we plan to meet their needs.

2. We engage directly with disabled children and young people and their participation is embedded in the work of our Health and Wellbeing Board.

3. We engage directly with parent carers of disabled children and young people and their participation is embedded in the work of our Health and Wellbeing Board.

4. We set clear strategic outcomes for our partners to meet in relation to disabled children, young people and their families, monitor progress towards achieving them and hold each other to account.

5. We promote early intervention and support for smooth transitions between children and adult services for disabled children and young people.

6. We work with key partners to strengthen integration between health, social care and education services, and with services provided by wider partners.

7. We provide cohesive governance and leadership across the disabled children and young people’s agenda by linking effectively with key partners

CTrustThe Charter is accompanied by a document: Why sign the Charter? which explains the value of the Charter commitments with reference to Health and Wellbeing Board statutory duties and powers, and signposts Health and Wellbeing Boards to resources that will help them fulfil each commitment. It also includes a guide to the evidence that Health and Wellbeing Boards could provide to demonstrate that they have met the Charter commitments.

The Government recently responded to the report of the Children and Young People’s Health Outcomes Forum by releasing ‘Better Health Outcomes for Children and Young People: Our Pledge’. This set out the shared ambitions for all agencies in the new health system to improve the health outcomes of children and young people in England. This Charter is aimed at providing a tool for Health and Wellbeing Boards to deliver on these ambitions for a key group of its local population.

The EDCM & The Children’s Trust have jointly sent the Disabled Children’s Charter to every Health and Wellbeing Board in England and asked the Chair to sign it.

You can support their campaign by sending an email to your Health and Wellbeing Board Chair and urging them to sign it too. Find your local Health & Wellbeing Board here or just search for your top-level Local Authority where you live and “Health & wellbeing board”

Looking at our own HWB in Surrey, the board does not have any representatives from the voluntary/community/minority services or any parent representation. I find this something of an anomaly in these new days of transparency and co-production.

What does your local HWB board look like? Does it give you confidence that it will sign up to and can deliver the Disabled Children’s Charter?

Download the Disabled Childrens Charter for HWB

Download the “Why sign the disabled children’s charter for health and wellbeing boards” document here

Help kick-start a project to make low-cost Sensory Stories!

Tania writes:
So many of the people I meet who are involved with special needs have an absolute passion for helping children with SEN & disabilities achieve as much as they possibly can.
Joanna Grace

Joanna Grace

Joanna Grace is one such person. Joanna works as a special educational needs and disabilities consultant and is also a registered foster career who has provided short break care for a child with special needs. She supports schools in SEN/D provision and writes educational resources.

Joanna is a big believer in the use of sensory stories and, after being dismayed at their cost, has set about raising funds through Crowdfunding site, Kickstarter, to make her own, low-cost “Sensory Story Project.”
But time is limited- she only has 18 days left to reach her funding goal to make a viable project. Funding on Kickstarter is all-or-nothing — projects must reach their funding goals to receive any money at all.

Joanna says, “I fear people look at it and think that because it got such a great start it’s bound to finish strong, but it is only me working on it. I’ve taken 42 days (that was the total length of the project) off work and I’m at my desk from when I wake in the morning until when I go to sleep and the strong start is me contacting everyone I know….but I’ve used them all up now. I don’t know how I’m going to get the project the rest of the way.

She’s written for Special Needs Jungle about it and about how you can help – and get something back for yourself. At the end of the post, you can find out more about Sensory Stories.

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Should sensory stories be available to families?

Early on in my teaching career I remember a staff meeting (I worked at a school that catered for children with severe and profound special needs) spent discussing what we would spend the literacy budget on for that year. After much agonising we decided to purchase a set of sensory stories.

Sensory stories are a great resource for children with special needs. Sensory stimulation is vital to cognitive development and for children with profound disabilities who can’t access stimulation themselves sensory stories are a fun way of providing it.

Helping to tell sensory stories

Helping to tell sensory stories

For children who struggle with sensory processing sensory stories can be an enjoyable way to encounter and get used to new stimuli. And for everyone they’re engaging – who wouldn’t want to be told a story in which you get to taste something, smell something, touch something, see something and hear something?

But when the sensory stories arrived we were disappointed, they’d been very expensive and the stories weren’t very interesting, the stimuli weren’t very stimulating. I realised that even if they had been great, the price of them would have prevented most families from being able to buy them to share at home.

I know that many families of children with special needs and disabilities struggle to find money for a whole host of things: new equipment, transport, specialist clothing, new treatments etc. It seemed wrong to me that stories which would benefit their children should be priced out of their range. It’s played on my mind ever since and in January, with the launch of Kickstarter in the UK, I saw my way to change it.

I’m currently running The Sensory Story Project on Kickstarter. The aim of the project is to create sensory stories that will be affordable to families, so that they can be bought as birthday presents, read as bedtime stories and shared between the people who are likely to be able to benefit most from them. I only have until the 20th of May to make the project a success (I’m running out of time!)

Kickstarter is a bit like sponsoring, in that backers pledge an amount of money which is only claimed if the project is a success. If the project doesn’t succeed, no money changes hands. However, unlike sponsoring, Kickstarter backers get something in return for their money: rewards!

My project has a long list of rewards to choose from: guides to sensory learning, little sensory toys, t-shirts, sensory experiences and of course sensory stories themselves. Pop across and have a look at the project and see if there is something you’d like.

SNJ has backed the project and made a pledge, and we’d love to have you as a backer too. http://www.kickstarter.com/projects/sensorystory/sensory-stories

All About Sensory Stories

What are sensory stories?

  • Sensory stories are comprised of simple sentences (not babyish, just crisp and clear). Approximately ten sentences in a story.
  • Each sentence is paired with a rich sensory stimuli which is shared as, or after, the sentence is read.
  • A rich stimulus doesn’t need to be expensive, discovering them takes insight: simple things like darkness, or the bang of a drum are strong experiences. Sometimes the way you deliver an experience can determine whether it is a rich experience or not, so for example – touching a piece of cloth isn’t a great experience, it’s the same as touching your own clothes or your bedding, it’s not very interesting, but if it was corduroy and you were encouraged to rub your fingers across the ribbing then it would become an interesting touch experience.

How can sensory stories be used to benefit individuals with special educational needs and disabilities?

  • Sensory stories were originally developed for use with individuals with profound and multiple learning disabilities (PMLD). Individuals with PMLD may not be able to access sensory stimulation for themselves. It is easy to overlook just how much stimulation an able bodied child accesses themselves simply by reaching out to things or turning their head to notice things. Sensory stimulation is needed in order to lay down neural pathways in the brain. If children can’t access it for themselves it is important that we provide it. Beyond the importance of stimulation sensory stories can be used to encourage outward engagement with people and objects, to develop communication and to encourage social connections.
  • Children who experience sensory processing difficulties as a part of their condition, (as often co-occur in conditions such as Autism and ADHD) can be helped to encounter sensory stimuli and learn how to regulate and modulate their reaction to these stimuli through using sensory stories. For a child with sensory processing difficulties a day-to-day sensory experience may be overwhelming, as a high pitch noise or fingers down a chalk board might be to someone else. Parents of children with sensory processing difficulties report that with practice their children can learn how to cope with difficult stimuli. Sensory stories can also be used to introduce new stimuli in a fun and safe way, so that when they are encountered in life they’re not so alarming.
  • Sensory stories can be used to encourage engagement with literacy and communication, in this way they can benefit children with conditions not yet mentioned and also children without special needs, and even adults! The more senses you utilise whilst learning the more chance you stand of remembering something (I expect you still remember songs you sang at school, I bet there are certain smells that take you back to times in your childhood) I’ve used sensory stories in universities and at conferences and I’m willing to bet that the people I spoke to still remember them!

Please back The Sensory Story Project so that more children can enjoy these stories.

For more information about the stories please watch the short film at The Sensory Story Project and read the project description. You can also visit http://jo.element42.org to see other articles about sensory stories and to contact Jo.

To find out how Jo is getting on running the project you can follow her on twitter at @Jo3Grace