I’ve just read this really insightful blog by Violet’s Diary and wanted to share it with you.

violetsdiary

I have talked in previous posts about the journey to diagnosis with B.  We had the meeting with the assessment team in the week of his 7th birthday.  My Mum came with me to hear the outcome.  I was really glad she did.

I explained in a previous post we had waited a long time for this meeting and really hoped that we were going to get some answers.

After talking us through a 20 or so page report we were finally presented with the conclusion that B displayed a range of behaviour and symptoms that was consistent with a diagnosis of ‘High functioning Autism’.  Despite the fact that we had spent a long time with the suspicion that B had an autistic spectrum disorder and that we had asked for the referral and the assessment process in order to confirm our suspicions this news came as a shock to…

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Getting troubled kids riding high with the brilliant Wave Project

While I was doing some research for DysNet, I came across a fantastic project that uses the beautiful Cornish coast to help young people in difficulty. The Wave Project is such a brilliant idea and is a volunteer-led organisation that uses surfing and the sea to improve the emotional health of young people.

Surfing with The wave ProjectIt is a non-profit making community interest company that works with pro surfers and volunteers to inspire and motivate young people who, for different reasons, are experiencing difficulties in their lives.

The charity’s clients include children and young people with mental health difficulties, emotional problems or learning disabilities – as well as those who are simply under lots of stress due to extraordinary circumstances. Its unique 1:1 surfing courses are delivered with support from a fantastic team of dedicated volunteers, who provide motivation, support and encouragement.

The Wave Project is evidence-based, and works with mental health professionals and psychologists to refer clients, and independently evaluate its projects to ensure that they provide lasting and meaningful benefits for its clients.

The surfing projects are all about creating a positive vibe. They are designed to bring clients out of their comfort zone and get them focused. But they also provide an opportunity to give them a fun experience, meet new people and get lots of encouragement.

The Wave Project believes that mental health should not come with a price tag. That’s why all of its projects are free of charge to clients. The charity raises the funds needed to deliver the courses for the young people and use professional services to take referrals. Its funding comes through direct fundraising, grants, trust funding and personal donations. Its backers include the NHS, BBC Children In Need and Cornwall Council.

The charity also depends heavily on its dedicated volunteers who give up their time to support its work with vulnerable young people.

‘They are all amazing beyond words,’ said Project Co-ordinator Joe Taylor. ‘Without them, we simply couldn’t deliver our activities to the standards we have set.’

The charity also recently launched The Wave Project Surf Club. Some of the children who had previously taken part in one of the courses enjoyed surfing so much that they were inspired to set up the club to provide them with ongoing access to the sport.

Joe, who founded the charity, said: ‘This club is the first to be run by and for children who have suffered from difficulties in their lives, and I am lost in admiration for the young people who have taken part.

‘Their ability to confront the difficulties facing their lives and respond in a positive way by launching their own surf club is a statement of how much young people can do.’

The Wave Project only takes referrals from people working in professional services or charities, such as psychiatrists, psychotherapists, counsellors, youth workers, charity organisers and SENCOs; that is how they know that the young people they work with have a genuine need. The charity is always keen to talk to professionals who work with vulnerable children and young people, so please contact Joe for a chat if you would like to refer a client. Alternatively, do so direct through the website using the simple referral form, and someone will call you back. All information about clients is of course managed in the strictest confidence, in accordance with the Data Protection Act 1998.

Volunteers also being sought to take part in the projects. For more information about these opportunities, please email info@waveproject.co.uk. For further information, please contact Joe Taylor on 07584 124873. More information about the Wave Project can be found at www.waveproject.co.uk.

 

Research, articles & opinion – special needs news from this week

Tania TirraoroAn incredibly busy week, so I missed my Wednesday post as I was in Brussels to speak at a EURORDIS workshop on social media for rare disease organisations. I was describing how we set up the social media for DysNet, the new Limb Difference Network for which I am PR & Community Manager.

It was a really interesting and exhilarating day, hearing from other organisations such as Bee For Battens, a charity set up by a family who are dealing with the loss of one child and the illness of another with Batten’s Disease. As is so often the case, such terrible adversity and tragedy prompts some people not to hide away but to reach out and help others in a similar position.

We hear so often today about greedy bankers, self-interested politicians and welfare cuts to the most vulnerable.  We hear nowhere near enough about people who, despite their own difficulties, put their energies into offering care and support to those in need. These are the inspirational people that newspapers should highlight on a daily basis – it would, I believe, have a positive effect on the nation as a whole.

And so… I’ve been busy, but not too busy for the ever-popular Friday round-up. Please do read my post about launching DysNet and another inspirational person, Geoff Adams-Spink, if you missed it earlier in the week. Enjoy the sun!

Launching DysNet – and how the right education helped one man make a difference, despite disability

For the past two months, in addition to my special needs work, I’ve been working on an exciting project to launch an online community network for people living with limb differences.

DysNet is the brainchild of a dear friend of mine, Geoff Adams-Spink, about whom I’ve written on this blog before. It’s aimed at bringing together people around the world affected by dysmelia (congenital limb differences) to share information, knowledge and resources. Today, Geoff writes about his life for Special Needs Jungle and demonstrates that, with the right support and education, it is entirely possible to live a rich, rewarding and independent life.

From Small Beginnings

First let me declare an interest: Tania Tirraoro the award-finalist writer who hosts this blog is a good friend and a professional contact.  She and I trained together as journalists on the South Cornish coast way back in 1988.  Back then, Tania was vivacious, tenacious and keen to get on.  More than two decades later, absolutely nothing has changed.  Or has it?

Bringing up two boys with Asperger’s has directed her considerable energies into the field of special needs education.  As someone who spent most of his childhood at special boarding schools, she has asked me to share a few thoughts about my experiences and about the current debate about special schools vs. inclusive education.

Geoff Adams-Spink

I was born half a century ago with disabilities caused by the morning sickness drug, thalidomide.  The drug left me with extremely short arms, flipper-like hands and very limited vision in the one eye that I have – the other is completely absent.

Back then, children with physical disabilities were destined for special schools – mainstream either wasn’t geared up or wasn’t prepared to gear up to support us.  My parents were told in no uncertain terms that my safety couldn’t be guaranteed if I attended the same local schools that had served my two sisters and my brother perfectly well.

So, aged five, I was packed off to Penhurst school in Oxfordshire which was run by NCH – now NCH, Action for Children.  I recently revisited the place and found it transformed.  It no longer supports children with the sort of disabilities I have.  All of the students have profound and multiple learning disabilities or PMLD.  The 26 children require intensive support from the 150 or so staff.  The cost of a place there can only be guessed at.

And this has set me thinking about the current debate about special needs vs. inclusive education.  It seems to me entirely ridiculous that anyone should assume that one approach should be adopted exclusively.  If we are, in the words of a former Secretary of State for Education to “respond to the needs of the child” there is surely room for a mixed economy.  Plenty of children – myself included – would probably manage perfectly well in mainstream education with a few minor adjustments.  Others would be left in the margins and need the specialist support of staff who know how to encourage children with different needs to achieve their potential.

This is not simply about physical compared with learning disabilities: two children with, superficially, the same level of impairment could well require different responses from the system.  My nephew, for example, has Asperger’s and managed quite well in mainstream education.  But he has the benefit of supportive parents who have equipped him with the knowledge to know how to regulate his behaviour and manage his condition.  He’s also a big strapping lad who has no shortage of confidence.  Another child with the same level of Asperger’s may well struggle in the same environment.

Is there life after special education?  You bet!  I out-grew Penhurst quite quickly and was sent to another boarding school aged eight.  This establishment had an approach that – at the time – was quite revolutionary: that disabled children (the majority were vision impaired though some had physical disabilities as well) should be encouraged to acquire certificated qualifications.  I left the place after nine years with eight O-Levels and went on to study for A-Levels at an FE college and then on to university.

So how have mine and Tania Tirraoro’s paths crossed again?  Tania is now an expert in the use of social media.  After 22 years working as a BBC journalist, I am now Chairman of a European organisation that represents people with limb difference.  We have an ambitious project to create a global network of those affected by dysmelia (as limb difference is officially known) and to link this network with a knowledge base and another network of dysmelia experts.  Spreading the word using social media is a no-brainer.  And our choice of Tania to establish our social media networks to help us achieve our goal was equally simple.

On Monday May 21, Tania is helping us to launch DysNet – an online community that will help people to conduct conversations in five languages. We’ll have a knowledge-sharing website and a secure community forum on RareConnect, run by EURORDIS & NORD, the world’s leading rare disease organisations.

I wonder whether, when my distraught mother left me at Penhurst for the first time, she had any idea that her son would get so much from his special education.

DysNet Website  | DysNet Twitter | DysNet Facebook | DysNet G+

SEN Green Paper response round up and other special needs stories

It’s been something of an eventful week for both Special Needs and Special Needs Jungle. Last week, I was called up by a reporter from the Daily Telegraph to ask my views on whether I thought one in five schoolchildren really had special needs. We had a good chat and the article appeared on Saturday. It was followed by a barrage of comments online on the DT, often displaying the most moronic and ignorant views– not aimed at me, but at vulnerable children.  As the paper didn’t really reflect the crux of what I had said, I wrote a blog post the same day that attracted much more thoughtful comments (thank goodness) from people who actually have opinions worth reading.

Then, the detailed response to the SEN Green Paper came. I was called up by Christine Alsford from Meridian TV, my ITV region and they came over and spoke to me about it, even filming Son2 in his bright blue BodySox.  (See post below with the footage).

On Wednesday, I went to an EHCP meeting for the Surrey pathfinder where, after the government announcement the previous day, there was understandably something of a sense of urgency and alarm at the accelerated deadline. The new lead, Susie Campbell, however, appears more than up to the task. Actually, I think she’s fab.

And so, understandably, this week’s stories are mostly about the Next Steps document and the response to it – all worth reading to see different perspectives.

And if you missed my guest post about Floortime for autism – there’s a free parent ticket and a cut price professional ticket for a June workshop on offer – check out the post below.

SEN – The Next Steps – My views & Meridian Tonight feature

So, there’s been much furore today about the headlines for proposals that  450,000 children be ‘struck off’ the SEN register. This is a bit of a stupid headline, to say the least. I was interviewed by Meridian Tonight (clip at end of post) about it for my views as a parent of SEN children.

The story was linked to this announcement from the DfE today that continues on from the SEN Green paper on Special Needs and Aspiration, that was trailed last week. It seems that any story about children with special needs is pounced upon by the haters and the critics. Oh, those bad teachers. Oh those terrible parents. Oh those benefit scroungers. I can guarantee you that none of those people who make moronic comments like that are either a teacher or have a child with special needs, which means that they should, quite frankly, shut up.

The key points in today’s “Next Steps” announcement were:

  • The new Education Health and Care Plan (EHCP)  will eventually replace the statement and will last from birth to 25 for those children who need it. The EHCP will be a “single assessment process, … ensuring that families have confidence that all of the different local agencies – across education, health and social care are working to together to meet their needs. This will stop parents having to have to undergo repeated assessments with different agencies.”
  • Personal budgets: all families with an approved education, health and care plan will have a legal right to request a personal budget, if they choose.
  • Joint commissioning: LAs and clinical commissioning groups would have to put arrangements in place to ensure that services for disabled children and young people, and those with SEN are planned and commissioned jointly.
  • School choice: parents whose children have an education, health and care plan would have the legal right to seek a place at any state-funded school of their choice – whether maintained, academy, Free School or special. LAs would have to name the parent’s preferred school so long it was suitable for the child, did not prejudice the education of other children or did not mean an inefficient use of funds.
  • Local offer: all LAs would publish a ‘local offer’ of  support, so parents would know exactly what is available instead of having to fight for basic information.
  • Mediation and the tribunal and children’s right to appeal to a tribunal: introducing mediation before Tribunal for disputes and trialling giving children the right to appeal if they are unhappy with their support.
What some sections of the press jumped on was that the statement from the DfE mentioned an OFSTED report from 2010 that claimed many children were wrongly identified with SEN. I touched on the reasons for this in my post on Saturday, so you can read it there. But to say that this happens often or even routinely is a huge exaggeration.
It is quite right that the government should seek to provide the most appropriate provision for children whether they have actual SEN or whether they need nurture groups because of family difficulties. If they can bring forward the funding and expertise to put this in place, then they should do it as soon as possible.
What they should NOT do as soon as possible (ie, this summer) is think that their policy can be informed by any results from pathfinder trials of the EHCP. In Surrey, this is still at a very early stage – ie, we, at Family Voice Surrey, are not even sure that any families are yet trialling it, so to have any firm conclusions drawn by this summer is optimistic in the extreme.
Tomorrow, Surrey has another day-long EHCP meeting that myself and my FVS colleague, Angela Kelly, will attend with great interest.
What must NOT be done is for these plans to be rushed through for political reasons – we are talking about the futures of some of society’s most vulnerable and if you’re going to shake up the system it should be done properly, in a considered manner.
Anyway, now for the light relief. Christine Alsford from Meridian (where I cut my TV reporter teeth) came over and filmed me and Son2. Son2 only agreed if he could be in his BodySox and the crew thought this was a genius idea.  What do you think?

The benefits of ‘Floortime’ for autism – and win tickets to a Floortime workshop!

An US company that offers a unique therapy to help parents and professionals communicate better with children with autism/special needs, is offering London-based workshops in the the technique. Floortime is a specific therapeutic technique based on the Developmental Individual Difference Relationship Model (DIR) developed in the 1980s by Dr. Stanley Greenspan. The premise of Floortime is that an adult can help a child expand his circles of communication by meeting him at his developmental level and building on his strengths. Therapy is often incorporated into play activities – on the floor. I had never heard of Floortime therapy before, but some basic research revealed a lot of positive feedback as a well-established technique including some interesting evidence-based research.

Click image for larger view

Jake Greenspan, the son of Dr Greenspan, has generously offered Special Needs Jungle one ticket to give away to a parent and a discounted ticket for a professional. Here, he explains more about Floortime: “The goal of Floortime is to help the child reach developmental milestones that contribute to emotional and intellectual growth such as interest in the world, relating to others, complex communication and emotional thinking. If your child has difficulties relating, communicating, or socialising, or if strong emotions like anxiety, frustration, or anger trigger tantrums and meltdowns, Floortime can help. Instead of trying to address every symptom and teach a child each missing skill, Floortime focuses on strengthening the core of the problem.  For example, when a child develops better communication and expressive language, behaviour improves.  When they learn to think and problem solve, they experience less frustration.  To help children do this they have to enjoy communicating and want to push themselves.  Floortime focuses on developing a close positive relationship and challenging children within fun activities of their choice so they want to succeed. By identifying and improving the cause of the symptoms children want to be more related, communicative, and logical.  Their behaviour improves because they are happier and better thinkers.   The relationships they build become the foundation for all future friendships. For children to be successful in school and life, they need to learn to think on their own. Parents – Learn to help your child think and learn at home during everyday activities and fun play-based sessions.  Improve their attention, communication, and behavior. Professionals- Learn to do Floortime and integrate its principals into your own curriculum in a Speech, OT, or Special Education setting. Join us on the 23rd or the 24th June at Morris Lecture Theatre, St. Bartholomew Hospital London.   Please visit our website at this link for information on research, pricing, and registration.

The Child may have a disorder or a set of problems, but he is not the disorder.  He is a human being with real feelings, real desires, and real wishes.

Dr. Stanley Greenspan

How to enter to win a free parent or discounted professional ticket:

Simply email me (Tania) at info@specialneedsjungle.comwith Floortime and either ‘parent’ or professional’ in the subject line. Parent tickets are usually £50 and professional tickets are £120 but we can offer one for just £99. The proceeds of the professional ticket are being donated to More House School in Surrey. You can enter up to 25th May

Special Needs Jungle in the Daily Telegraph. What I really think

There’s a story about SEN in the Daily Telegraph today “Can 20 per cent of schoolchildren really have special needs?” by Peter Stanford. It’s already attracted lots of comments, some informed, others somewhat less so, shall we say.

The story is a follow on to other, recent reports blaming rising SEN figures on either bad parenting or bad teaching or both. Peter wanted to find out the real root of it, but it seems even he was flummoxed.

He interviewed me for the piece and the general gist of what I said is there, although I didn’t give up my TV career to go into school to help, I gave it up to be with my children at home because I decided it was a much better use of my time than giving good “TV smile”. Being able to help in school and see for myself how things worked was very useful, especially in the light of my boys’ difficulties. I could see for myself how different they were to other children, in a classroom setting. I could see that the teachers were, in my opinion, of varying quality, ranging from totally brilliant to inexperienced and out of their depth.

What I said when speaking to Peter but didn’t make it into the piece, was that I believe that the pressures of today’s society on children, parents and teachers are immense. Responsible parents are faced with the knowledge that their kids are going to have to survive in a highly competitive world and are more vigilant when they see their child not doing as well as they might. Responsible parents just want their child to have the same opportunities as every other child to reach their potential – and that sometimes means accessing extra help through the SEN system.

Are these parents all middle-class? Many are, but far from all of them. I know this to be true from the emails I get. It doesn’t matter what class you are, the difference is how much attention you’re paying to your child and that has nothing to do with class.

Now, it is obviously true that a child does not automatically have SEN just because they are not at the top or even the middle of the school class. But a parent knows their child the best. When their profile of achievement is uneven or their social difficulties affect their ability to learn, intervention is warranted. In a mainstream school, a teacher has thirty children in the class. That’s thirty children of differing ability, different learning styles and varying levels of attention and behaviour, whatever their background.

Teachers aren’t super-human. They’re overworked, stressed (whatever the man from OFSTED says) and under-resourced. Can one person pay as close attention to the needs of thirty totally different children as each child requires? Of course not and the blame is not theirs. The SENCo might have three other roles in the school. The IEP may not be worth the paper its written on because it’s rarely looked at (through time pressure, not because the teacher doesn’t care).

This is why responsible parents have to step in to make sure their children get the help they need. They’re not “sharp-elbowed” or any other derogatory term. They are responsible, vigilant and determined, because if they don’t help their children, no one will. And don’t think that they are able to somehow ‘cheat’ the system. Only around 2% of children actually get a statement – far less than should have one in my opinion, but those that do have been through an unforgiving assessment process of experts and, sometimes, the scrutiny of an appeal to the SEND Tribunal

And what about those children who are not blessed with determined parents like these? The ones who are often put on the SEN register because it’s the only thing in a teacher’s toolbox to give them a leg-up? This is the huge inequity of society. These children often fall through the cracks. They end up in a continuing cycle of deprivation. They may even end up in the criminal justice system.

They may or may not actually have special educational needs to start with, but if their home life is insecure and they live in poverty, it is sure to have an impact on their learning. They may just need attention and nurturing to give them self-esteem and confidence in themselves. Former head teacher, now an Educational Psychologist, Charlie Mead, has an answer and it’s not rocket science. He has instigated ‘nurture groups’ in secondary schools with amazing results.

In this presentation he describes how nurture groups in mainstream secondary schools can enable children with “special educational needs” to receive the support they need and improve their educational outcomes making the best use of scarce resources. Watch his presentation below. To see him speak, book for the TAPF SEN conference in June at this link

Great special needs stories, blogs and a cute dog too

For the first time this week, I’m alone in the house, apart from Leo the Labradoodle, currently sulking because he had to have a bath after rolling in something revolting. I haven’t told him yet it’s his anti-flea treatment day too, which he’s also not keen on. Everyone but me has had the flu (man flu of course). As a registered carer, my GP gives me a free flu jab so I have managed to avoid it. This is just as well as I’m flat out preparing for the main launch of  DysNet, the new network for people affected by limb differences for which I’m PR & Community Manager.

And so, exhausted, I bring you my weekly round up of recommended special needs stories and blogs that I’ve seen this week. It just remains to say a huge thanks to all who voted for me in the BritMums awards, because I’m now going to have to find a nice frock as SNJ has been chosen as a finalist!

SEN Green Paper: Ministerial “Detailed response” expected next week

So, next week government ministers will set out their detailed response and reform timetable as their next steps in the SEN Green Paper. They’ve been saying it’s ‘imminent’ since February, so we’ll see what they’ve come up with.

Ministers say they’ve committed to making all the necessary legal changes to put in place reforms proposed in the Support and Aspiration Green Paper and yesterday, in the Queen’s speech, they pledged that the planned Children and Families Bill would deliver better support for families. It would introduce a single, simpler assessment process for children with SEN or disabilities, backed up by new Education, Health and Care Plans – the same EHCP that Surrey, as a pathfinder council, is setting up now. As a member of parent-carer forum, Family Voice Surrey, I am one of two parent reps, along with FVS Chair, Angela Kelly, for this pathfinder stream. Our next EHCP meeting for this is next week, so it will be a very interesting day, I think!

The SEN key measures announced yesterday were:

  • replacing SEN statements and Learning Difficulty Assessments (for 16- to 25-year-olds) with a single, simpler 0-25 assessment process and Education, Health and Care Plan from 2014
  • providing statutory protections comparable to those currently associated with a statement of SEN to up to 25 in further education – instead of it being cut off at 16
  • requiring local authorities to publish a local offer showing the  support available to disabled children and young people and those with SEN, and their families
  • giving parents or young people with Education, Health and Care Plans the right to a personal budget for their support
  • introducing mediation for disputes and trialling giving children the right to appeal if they are unhappy with their support.

The legislation intends to draw on evidence from all the 20 local pathfinders set up in last September. Certainly, in Surrey, we have a long way to go before the LEA are in any sort of position to make evaluations on outcomes. This is despite the government saying that interim evaluation reports are due in summer and late autumn 2012, with a final report in 2013.

IPSEA, the charity that supports parents though the SEN process said, “It is essential that the Pathfinder pilots be given a rigorous evaluation before any legislation in this vital area goes on to the statute book. The pilots started only in late 2011, and have two years to run. It seems premature and potentially unsound to rely on the evidence from these Pathfinder pilots one way or the other before 2014.”

There are huge changes in the offing and no one is really sure, as yet, how it’s all going to work out. There certainly is an enormous amount of work being done by many committed people all over the country in the different aspects of the proposals.

I look forward to seeing the detailed response and finding out how much they’ve listened to what people at the SEN coalface really think.

Home educating a child with special needs

Many parents who have children with special needs seriously consider home educating their child. It throws us lots of issues – especially if they are statemented. Today. home education expert, Fiona Nicholson, who has given evidence to government committees on the subject of elective home education, talks to Special Needs Jungle about these issues and how to go about teaching your SEN child at home.
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Some parents decide when their children are very young that school is unlikely to meet their needs. But most children who are home educated did go to school for a while first. When it comes to the crunch, many parents feel they have no choice but to home educate because of problems in school, especially when children are bullied. Children with special needs are often singled out because they are different.
Fiona Nicholson, Ed YourselfThe school day can be very long for a child with special needs and children always come home tired or angry. Many parents say it’s less tiring to home educate because they can go with the flow more. It may mean that parents have to give up their job in order to home educate, so I do get asked a lot of questions about the benefit system.
Children with special needs have an equal right to be educated at home. A significant number of autistic children are home educated and the National Autistic Society has information on its website about home education.
One parent told researchers: “the number of HE families in the UK is growing rapidly, as many are literally forced to it by bullying in the schools that the school system can’t/won’t protect their children from, and/or by the failure of the schools to decently address special needs. We are one such family, and know many others. We are not choosing home education as an alternative lifestyle choice, but have been left with no other acceptable option.” Another parent commented “regrettably, we would never have considered home ed until forced into it because of bullying. We now wish that we had always home educated her.”
Home education isn’t a decision which is taken lightly. Parents are anxious about how children will make friends and they do worry about whether they are keeping children wrapped in cotton wool or protecting them from the real world.
In fact there are many social opportunities for home educating families. The internet is widely used by parents to link with others in their area and nationwide. There is also a thriving internet community specifically for home educating parents with special needs children. Parents who are just thinking about whether they could possibly manage to home educate and what it actually involves can join and ask questions from parents who have already made the transition.
If the child is a registered pupil at a mainstream school, the parent  wishing to home educate should send a written request to the school for the child’s name to be taken off the  school roll. You don’t have to ask for permission. It’s the same process whether the child has a statement of special needs or not. The statement will need to be modified to take off the school’s name and to say that the parents have made their own arrangements.
If the child is a registered pupil at a special school, the parent does require  consent from the local authority before the child’s name can be removed from the school roll. Some local  authorities will ask for further information about how home education will accommodate the child’s special needs.
Even when children have a statement of special needs, the local authority doesn’t have to help or provide services once the child is out of school. On the other hand, the statement isn’t enforceable on the parents, as long as they are making provision for the child’s special needs. This gives families more responsibility but more freedom as well.
In England the Department for Education has said that the local authority can claim back money spent on SEN support and the latest Government rules say this can be agreed on a case-by-case basis with the family. The total amount that the Council can claim is the same as schools receive for each pupil. However, it’s totally up to the local authority and not many have taken it on board yet. You need to be mentally prepared for the possibility that you’ll get nothing once your child is out of school.
Once parents are home educating they obviously have less opportunity to go out to work and earn a living. Carer’s Allowance is payable to people who are caring for  a child or adult receiving Disability Living Allowance at medium or higher rate. Home educating parents – including lone parents – are entitled to claim Jobseeker’s Allowance if they are prepared to agree to the qualifying terms and conditions. Home educating parents can also claim Working Tax Credit and Child Tax Credit for self-employment which can include working from home.
Links: 
My website has a lot of information about home education law and SEN and also about state benefits http://edyourself.org/

Special Needs Jungle – a FINALIST in the BritMums Blogging Awards!

Change FinalistJust a quick one – to say THANK YOU to everyone who voted for Special Needs Jungle in the UK BritMums Brilliance in Blogging Awards 2012.

It’s just been announced that the blog is a FINALIST in the Change category – the only one I entered. The awards are announced at a BritMums Live! on June 22nd and I have my ticket to go, though it means that I’ll probably have to miss most of my boys’ Sports Day, which makes me feel very selfish.

Still, as their aunt and four cousins will be visiting from New Zealand, maybe they’ll all turn up in force to support them along with my husband and in-laws.

Mustn’t get too excited – I’ve never been a finalist for anything before, so it’s a bit much to expect I might win, but it will be great to put faces to all those mum bloggers I’ve ‘met’ online in the last few years.

So, if you took the time and trouble to vote for me, I really appreciate it, thank you.

Helping your special needs child – a mother’s story

A mum called Tanya contacted me the  other day and asked to share her story about her journey to support her disabled son with everyone, which I am only too delighted to do. Here it is below and Tanya has some extremely useful suggestions so I urge you to read it. Please leave your comments in the comments section so she can see them.

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Hi everyone.

I am mother to a ten year old boy who was born with multiple birth defects. He required many surgeries and as a result was left with severe separation anxieties. When he started pre-school I had to attend with him and couldn’t even leave the room. He could not attend school for more than 2 hours a day during his reception year because of his anxieties, medical problems and mainly because this school was less than empathetic to his and indeed, our whole family needs. Although they were classed as ‘outstanding’ in their OFSTED report, they never listened. They only told and kept referring to themselves as “experts”, a term we all as parents hate.

I moved within the year and made sure I placed my son in a school where the headteacher was very empathetic. She listened attentively to my concerns and requests – I knew this was the right school for him and although I applied for a Statement as I felt and the school felt this would be needed, he managed to settle in straight away with very little problems although he was placed back into reception again (a year behind his age) and was placed on School Action Plus.

I gained employment at this school as a Teaching Assistant and worked with an Autistic boy for the three years he was in this school before transferring to Junior School.

I have been able to use my knowledge and feelings as a parent to help in my work with this boy. I have also witnessed how communication plays a huge part between schools and parents – I see how things can be improved, I see how schools can be too judgemental on parents without knowing the full facts and seeing the full family picture. I also see where parents can be too demanding on schools without knowing all the facts.

In the course of my work I attended courses. I found out about the Autism Toolbox. This is a valuable resource. I never knew this existed however, ALL schools have it [SNJ note: all schools in Scotland, this is a resource developed for Scottish schools]. It gives examples of language jigs and social stories. These can be used for anything i.e, trips out shopping, going to bed, playing with friends, school trip out, school photographs etc. PLEASE, PLEASE, if you are a parent of not only an autistic child but a child who has any kind of anxieties, communication difficulties, behavioural difficulties, ask your school if you can borrow this resource to help you with routines at home and also make sure they are using this resource in school for your child. The Autistic toolbox can also be downloaded from many LEAs websites under the special needs section. If I had known about this valuable resource I could have used it to help my son and am sure that it would have saved a whole lot of family frustrations.

When looking for schools it is important to use your ‘gut instinct’ as a parent. My son’s first school did little to help him, even though as I said, they were rated as ‘outstanding’ in their OFSTED report. His new school however was rated as ‘satisfactory’ but they listened and helped him progress. It is also important as a parent that you not only get to meet the teacher but more importantly your child’s keyworker or teaching assistant, as it is this person who will have the most ‘hands on’ time with your child.

Talk to them about how you feel, tell them what is important to you, be sincere. Most of us find it easier to be honest and tell medical people the difficulties we are experiencing at home but when it comes to schools we feel less able to tell them about our struggles. A good school will not judge you if you are honest about what you are having difficulties with. Suggest home/school diaries where the teaching assistant will record what went well and what was difficult in the school day. Then the parent can record what went well, was difficult at home – home and school working together where the child gets rewarded at home for what went well during school and the child gets rewarded at school for what went well at home.

The difficulties can also be addressed. Ask for the TA to make up social stories – examples of these can be found on the internet. These can then go home and be read as a night time story – they can tell stories about how your child can ask to play with children at playtime, problem solving, when things change, etc. The pictures from these stories can then be minimized and used by the TA as visual reminders that can be shown to your child when playtime begins etc.

Find out whether your child has support at playtime; in lots of schools the teachers, TAs have their break when the children are out playing. This is when your child needs the most help! Other teachers and TAs on duty in the playground may not fully be aware of your child’s difficulties. Ask the school if you can go in and talk to all staff including teachers, teaching assistants, midday supervisors. It is important that everyone at school knows your child, their difficulties and how to help.

Schools have many resources which can help your child with their learning, homework. They also have special needs website addresses to help your child learn at home that can help with maths and also help develop fine motor skills. Just ask if you can borrow these resources or make a note of the website addresses.

If there is an important meeting at school about your child, ask the school to confirm the minutes of the meeting in writing. We as parents can only hold as much information as our emotions will let us. This often leads to us ‘making up’ the rest of the conversation without knowing it and jumping to false conclusions.

If your child has recently started school and you have been an ‘at home mum’ caring for your child, why not volunteer as a parent helper? If you enjoy this and a position becomes available at the school, ask to be considered. Don’t feel that you are unqualified for the job. You can have a teaching assistant with all the qualifications in the world who lacks the passion and enthusiasm required to really make a difference when working with a child and then there’s you – a parent who knows what it’s like, who will treat the child they work with as if they are your own, being able to relate to how their parents are feeling.

I am so glad I applied for a job as a teaching assistant – I always think of how I would want someone to work with my son when I am working with a child. How wonderful it is to have played a part in helping a child succeed knowing that you put your all into working with that child and neither you nor anyone else could have helped that child more.

I would really appreciate your comments as to whether you feel your school is supportive or unsupportive – Do they always plan ahead and have everything sorted out so you are not worried at all or do you feel you have to constantly approach them in order for things to move forward.

Many thanks to Tanya for sharing her experiences. If you’d like to share what you have learned about helping your child to help others, please email me  

Eye-catching special needs news & autism articles from this week

Another week of rain and economic gloom. Note to self, stop listening to the Radio 4 Today programme, it’s starting your day off ALL wrong.

Still there is some good news for me, anyway: I’ve been asked to take part in a Dragon’s Den/Apprentice type thingy for young people. Apparently, I’m an inspirational business expert. When I told Son1, he snorted with derision. Now I’m going to spend the next few weeks feeling like a total fraud. I said yes, of course, because my message to those young people will be to embrace opportunities when they come-  both to help yourself and to help others.

Anyway, happy weekend and here’s my pick of the posts and special needs news from the last week.

Is your special needs blog on my RSS? If I’ve never mention you here, the chances are you’re not. Leave your website link in the comments and I’ll add you in!

If ‘child centred’ help is a no-brainer, why isn’t it happening?

One thing that’s become very familiar in the last few years, both personally and from reading your comments and emails, is how outragously hard it is to get the right medical and psychological support for ASD children and their families.

Our family has been waiting for a CAMHS appointment since the beginning of the year. I’ve called up the consultant’s secretary on numerous occasions and still nothing happens, despite being promised an appointment at the beginning of April. It’s frustrating, stressful and my son meanwhile, is not getting the help he needs.

Not that going to CAMHS is a particular help in many cases. When Son1 went, we were told that CBT wouldn’t work because he had Asperger’s and as he was now in the right school, goodbye to you!

And professional support for parents? Don’t get me started. My GP told me candidly that there wasn’t help for anyone and that’s just the way it is.

One lady who wrote to me recently said, “The two consultants in our CAMHS team told me that my son doesn’t tick enough boxes to fit easily into a diagnosis but they did acknowledge that he’s a complex boy with significant processing deficiencies (whatever that means). I stamped my foot a bit and said that they jolly well need to try to fit him into a box so that we can get some help and support for him and they agreed to carry out some diagnostic tests. Unfortunately, all did not go to plan as when we arrived at the department for the cognitive tests, the consultant had collapsed and was being taken away in an ambulance. The other consultant told us that his colleague had been made redundant and that we wouldn’t have another chance of an appointment with her. This was in January and then I never heard from them again.”

She went on to say that her GP wanted to refer her son elsewhere, but CAMHS refused to support the referral as they want to see the diagnosis through themselves and are expecting a locum to come in the near future. “It seems that at every step of the way we are faced with obstacles. I can’t believe what they are prepared to let these children go through before they get a diagnosis. I am determined to get things sorted for my son but feel so sorry for the other children out there who have parents who are less able to challenge the professionals. I hope that one day things will be different.”

Another mother told me that her 11 year old daughter, who suffers from chronic pain and ASD, was refused an assessment by the LEA. After a period of homeschooling, her daughter went back into school as although her anxiety and self-esteem had improved, the mum was concerned about her daughter becoming isolated.

She said, “During this time, I applied for a statement but the LA refused to assess her, saying the the school were meeting her needs. I didn’t appeal because I was so wrapped up with dealing with her pain and needs myself.

“She spent about two weeks in school, before it became quite apparent that her new levels of self esteem had dropped through the floor. She bacame anxious and her pain got worse. So she was signed off sick by the doctor. I was told that if a child was signed off for over a certain period they would get some help, but none arrived. So during November and December she remained at home, waiting patiently for her medical appointment in January, which we have waited for since July. The school sent her a few SATs papers.

“After an understandable meltdown in the hospital and the trauma of the whole experience of day surgery, she returned to school a couple of weeks later and lasted three and a half days. She was signed off again with anxiety and pain but without any firm diagnosis that would satisfy the LA that we had new information to reapply for a statement.”

After seeing a different specialist, she has now been given the diagnosis she needs but is still out of school. The diagnosis means that she can now, however, access out of school education. The LEA has now agreed to assess but only after putting this family through an incredibly stressful year of relentless rounds of school and medical appointments as they tried to convince someone to help their daughter. The young lady was, during all this time, in a lot of pain.

Still, it’s not over yet the mum says, “I just hope we do get a statement so fingers crossed, and in the meantime I’ll learn all about tribunals just in case we don’t!”

Will the new Green Paper make things easier? Will it really put the child at the centre and bring together health, education and care? We’re still waiting for the government’s document, “The Way Forward” to be published, despite it being ‘imminent’ since February.

The only way a reformed system can work is if all the services do work together for the good of the child and on top of that, if the family or carers supporting the child are in turn, supported themselves. It seems like such a no-brainer, so why does it just never seem to happen?