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.
Posted by Special Needs Mum on May 29, 2012
http://specialneedsjungle.com/2012/05/29/1348/
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.
It 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.
Posted by Special Needs Mum on May 28, 2012
http://specialneedsjungle.com/2012/05/28/getting-troubled-kids-riding-high-with-the-brilliant-wave-project/
An 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!
Posted by Special Needs Mum on May 25, 2012
http://specialneedsjungle.com/2012/05/25/research-articles-opinion-special-needs-news-from-this-week/
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.
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+
Posted by Special Needs Mum on May 21, 2012
http://specialneedsjungle.com/2012/05/21/launching-dysnet-and-how-the-right-education-helped-one-man-make-a-difference-despite-disability/
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.
Posted by Special Needs Mum on May 18, 2012
http://specialneedsjungle.com/2012/05/18/sen-green-paper-response-round-up-and-other-special-needs-stories/
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:
Posted by Special Needs Mum on May 15, 2012
http://specialneedsjungle.com/2012/05/15/sen-the-next-steps-my-views-meridian-tonight-feature/
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
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
Posted by Special Needs Mum on May 15, 2012
http://specialneedsjungle.com/2012/05/15/the-benefits-of-floortime-for-autism-and-win-tickets-to-a-floortime-workshop/
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
Posted by Special Needs Mum on May 12, 2012
http://specialneedsjungle.com/2012/05/12/special-needs-jungle-in-the-daily-telegraph-what-i-really-think/
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!
Posted by Special Needs Mum on May 11, 2012
http://specialneedsjungle.com/2012/05/11/great-special-needs-stories-blogs-and-a-cute-dog-too/
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:
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.
Posted by Special Needs Mum on May 10, 2012
http://specialneedsjungle.com/2012/05/10/sen-green-paper-ministerial-detailed-response-expected-next-week/
The 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.Posted by Special Needs Mum on May 9, 2012
http://specialneedsjungle.com/2012/05/09/home-educating-a-child-with-special-needs/
Just 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.
Posted by Special Needs Mum on May 8, 2012
http://specialneedsjungle.com/2012/05/08/special-needs-jungle-a-finalist-in-the-britmums-blogging-awards/
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.
**
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
Posted by Special Needs Mum on May 7, 2012
http://specialneedsjungle.com/2012/05/07/helping-your-special-needs-child-a-mothers-story/
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.
Posted by Special Needs Mum on May 4, 2012
http://specialneedsjungle.com/2012/05/04/eye-catching-special-needs-news-autism-articles-from-this-week/
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?
Posted by Special Needs Mum on May 2, 2012
http://specialneedsjungle.com/2012/05/02/if-child-centred-help-is-a-no-brainer-why-isnt-it-happening/
The world of special needs is, I have discovered, populated with extraordinary people - both those who care and do their best for their children and professionals who go the extra mile to provide whatever help they can.
One such lady is Gloria Vessel, a barrister who has for many years carried out pro bono work for families affected by disabilities and SEN. In a decade of helping families at the SEN Tribunal, Gloria has never lost a case. However, it became clear that she could not take on all the children whose parents were asking for her help so she founded the charity, Advocates for Children. Today, Gloria has written about the charity and its work exclusively for Special Needs Jungle.
**
For parents of children with disabilities it really is a jungle out there, especially when it comes to getting the right school, or the right schooling for your child. Parents are faced with a bewildering mass of Codes of Practice, deadlines, and the ever present prospect of having to take your case to a Special Educational Needs Tribunal. Advocates for Children is here to help. We are a relatively new charity; only three years old. Our volunteer Advocates help children with disabilities and life-limiting conditions aged 4 – 16 with problems at school. Our services are free. 
Problems we deal with include getting the right educational support for a child at school, getting the right school for the child, giving parents advice on where they are going with their child’s case, or addressing the issues of bullying or abuse of children. We believe that when you are helping children one size does not fit all. No two cases are ever the same, and we know that every child and every family are unique, so we devise help to fit the needs of each family and each child. Your child is never just a case number to us. Your child is a unique and special individual that we are privileged to advocate for. It is our policy to see each child that we Advocate for, so that we know best how to help them. Our central focus is always what is best for the child. We also give advice to parents over the telephone, where they simply have a query that they need some help with. For many parents we can resolve a problem with one call. If parents want to be legally represented, we can help you to find the right solicitor, and to advise you on what you need to do. In certain circumstances, we would represent our own clients at a Special Educational Needs Tribunal, however we try as hard as we can to avoid a Tribunal if that is possible. The law is a vital tool for parents to be able to get help for their child, but we urge parents not to see it as a first resort, or as the only resort. So often parents will ring asking about Tribunals, or they are even be on their way to Tribunal, without ever having been told, or having been able to find out, what they actually need to do to give themselves the best chance of success at a Tribunal, or even understanding exactly what is involved. That is a dangerous position to be in. Knowledge is power, so we help to give you that knowledge. It is also amazing how many parents have been told that they need to go to Tribunal without ever having really met with the Local Education Authority to discuss their child’s case. We can review a case and see where there are areas of agreement, as well as disagreement, and see if a solution can be arrived at by negotiation and not by immediate legal action. That benefits both sides and benefits the child. And, if it comes to a Tribunal, the parents will be much better prepared, and will know what they need to focus on. It really is good to talk! A Tribunal is a legal procedure and the evidence you put forward is vital to your case. We advise you on what the evidence is that you need. You know your child inside out, but a Tribunal Panel does not. They have to decide on what your child is all about by the written evidence in front of them. So, you need your written evidence to help you make your case. Of course you can talk about your child, but you need written evidence too. As a barrister I have the greatest respect for and faith in the legal process, but I also know that the better informed parents are the better equipped they are to make all-important decisions for their children before that process begins. Advocates for Children believes in the dignity of the child. We champion the legal and human rights of the children we Advocate for and our watchwords are ‘Listen, Respect, Care’. Our Trustees are all Mums and Grandmums who really understand what our clients are facing and that is what we feel is our greatest strength, as it drives all that we do for these special children. Our Mission Statement is; To enable children with disabilities to have the opportunity to fulfil their true potential and have their chance to shine. We are proud to do just that.
Posted by Special Needs Mum on April 30, 2012
http://specialneedsjungle.com/2012/04/30/advocates-for-children-a-free-sen-legal-advocacy-charity/
I’ve come across lots of interesting stories this week so here’s my list of the cream of the crop of news, blogs and, of course the week’s stories from Special Needs Jungle. Have a great weekend – let’s hope the rain holds off.Posted by Special Needs Mum on April 27, 2012
http://specialneedsjungle.com/2012/04/27/my-pick-of-the-posts-about-special-needs-this-week/
There are just four days left to secure the early bird price for this year’s Towards a Positive Future SEN conference in Newbury.
The conference takes place on June 16th and I’m honoured to be one of the keynote speakers,. NAS president Jane Asher will be leading a Q & A session and other speakers include special needs, legal, education and disability experts.
The conference is for anyone who lives or works with children and young people with SEN and disabilities. It’s a great opportunity to learn more about how to help your child or children you care for and to speak to other parents and experts.
There will be separate seminars dealing with dyslexia, autism and the implications of the green paper. See the full programme details here.
Early bird tickets are just £36 for parents – which considering most conferences are into the hundreds is an incredible deal. Early bird professional tickets are £72.
Book now to avoid disappointment. The event is at the Arlington Arts Centre in Newbury and parking is free. Lunch and refreshments are included.
The conference is sponsored by, among others, SEN Magazine and Pearson Assessment.
The conference organiser, Janet O’Keefe, said, “This conference will focus on what we know works and how this can continue to work whatever the future political or legal system we find ourselves under in the coming months and years. Our aim is that parents of children with special educational needs and the professionals that support them are as informed as possible about the Green Paper, forthcoming changes and future implications on health, education and social care funding so that they can navigate the system successfully.”
Posted by Special Needs Mum on April 26, 2012
http://specialneedsjungle.com/2012/04/26/act-now-for-a-chance-to-learn-more-about-sen-for-just-36-including-lunch/
Last week, while reading my SEN news feeds, I came across an article about dyslexia on the Conservative Home website by education expert, John Bald. John is a former OFTSED inspector and contributor to The Guardian. He has almost forty years’ experience of teaching people of all ages to read and write, to learn foreign languages and to understand and use arithmetic.
I got in touch with John and asked if he would mind setting out his ideas in an article for Special Needs Jungle readers. He very kindly obliged – and I think you will find it extremely interesting reading:
*
Tania’s request seemed simple – she had read a posting dealing with literacy problems on another site, which set out to explain what I described as “the dyslexia racket”. Could I write a straightforward guide for parents on what to do if their child has a problem?
For some issues, the answer is, “Yes”. If the problem concerns literacy, and does not reflect a serious general learning difficulty, bring your son or daughter to see me, and I will fix it for you without charge. This is a big claim, but I deliver on it, time after time, because I know the mental processes involved in reading, and the regular and irregular features of English spelling like the back of my hand. As we read, we use the information contained in letters to do several things at once. We identify words by tracking print closely with our eyes – the latest tracking devices show eye movements following print, as well as changing their fixing point on the page. As we do so put them together into phrases, to reproduce the intonations of the language and reconstruct the sense indicated by the author.
John Bald
The process is a little like reading music. Phonics, the relationship between words and sounds, is at the heart of it, but, unlike musical notation, they are not always reliable, so we have to learn what the letters are telling us in an individual word. For example, the a sound in can has to be stretched to say can’t, and the letters don’t tell us this, any more than they tell us the difference between do and don’t. Once we’ve learned to use what the letters tell us, without supposing that they tell us everything, we understand that the language is a human construct, with human failings, and that it does always respond to strict logic.
As I say to children, English is roughly a thousand years old, and if we were a thousand years old, we’d have a few wrinkles. Much of the difficulty many people experience with reading in English arises because teachers do not know the wrinkles. It’s not their fault – no-one has pointed these out in their training. The reason I came to know them myself was that I did a degree in French, which is the source of over half of the problems. Say table in French and you will hear that l comes before e. It’s phonics, but French phonics. William the Conqueror’s invasion in 1066 left us with a lot more than castles!
How we put words together in phrases and sentences is also a bit like music, and I only understood this last year, when I read the French government’s national curriculum for learning English. It points out that, except for very short words, one part of each word is almost always picked out for stress. Again, the letters won’t tell us what this is – we have to know it, and it is not even the same in words of the same family – photograph, photographer, photography. The last straw for foreign learners is that we pick out one word in each phrase or sentence for extra stress on its own, usually without even knowing that we do it. Controlling these patterns of stress in real time requires very detailed knowledge of the language, and is one reason why so few foreign speakers of English have no detectable accent.
So, if someone comes to me with a reading problem, I explain this and we practise. First, though, I have them read to me, and ask myself two questions:
1. What is it in this person’s thinking that is preventing them from reading?
and
2. How do I help them adjust their thinking so that they can read?
These questions focus my mind on the person I’m working with, and not on some theory – my own or anyone else’s. We need to tune into print, and to help people do this, we need to know the causes of interference. The most common are guessing at words, usually from their first letter, not seeing clearly – some people are sensitive to certain wavelengths of light in a way that only becomes clear when they have to apply their eyes to the tightly disciplined activity of reading – and not hearing clearly, sometimes because of misconceptions developed in early childhood through conditions such as glue ear. Teachers should know all about these things. Alas, most don’t. So, if your child has a problem with literacy, take him or her to someone who does.
I use a similar approach to spelling , Slimmed Down Spelling, but that is for another posting. An account is at http://johnbald.typepad.com/language/2009/06/slimmed-down-spelling-and-government-nonsense.html. I am currently working on maths.
But what if the problem is not with reading, spelling or arithmetic? What if it is a behavioural issue, Asperger’s or Autism? The truth here, I think, is that our knowledge of these issues is not far advanced from that of our general knowledge of science in the seventeenth century. We can see things that we can’t fully explain, and our attempts to solve problems are therefore not fully effective. Even respected scientists such as Simon Baron Cohen resort to blatant speculation, such as his idea that autism is the “extreme male brain” when the evidence runs out.
But I still come back to my two questions, perhaps extended. What is it that is making this person angry, or anti-social? What is it that they need to understand and don’t, and how do we make it clear to them? We know of successful techniques such as social stories to help children focus attention on other people as well as themselves or, more recently, of practising telling the time quickly in order to focus attention on detail. One thing I can say, from extensive experience, is that anger and poor behaviour often arise from children’s frustration at not being able to do their work, and in some extreme cases because of the effect of sensitivity to light that is not identified because no one is looking for it. If the issue that is causing concern is anger, however it is expressed, then if we are to tackle it, we need to move beyond our concern with managing the anger, find out what is causing it, and do what we can to remove the cause.
Find John’s blog and contact details here: http://johnbald.typepad.com/
Posted by Special Needs Mum on April 23, 2012
http://specialneedsjungle.com/2012/04/23/common-sense-solutions-to-solving-dyslexia-issues/
Aah, the boys finally returned to school mid-week. They’ve been off so long I’d almost forgotten the way there. I’m not sure which I prefer – the peace and quiet of working undisturbed by regular requests for food against the lack of need to do the stressful school run…
There have been three SNJ posts this week, including Son2 in his fetching lycra Body Sox (see link below), as well as lots of interesting special needs news stories. Check them out below. And, if you haven’t voted for Special Needs Jungle in the BritMums awards yet (see link badge upper left), there’s still time. You know it makes sense.
Posted by Special Needs Mum on April 20, 2012
http://specialneedsjungle.com/2012/04/20/special-needs-news-you-can-use-from-the-last-week/
Many children with special needs have sensory issues, including my two. Their school used Body Sox which Son2 absolutely loves. He asked me to source one for him and here he is modelling it. I think it’s him, anyway…
Posted by Special Needs Mum on April 19, 2012
http://specialneedsjungle.com/2012/04/19/sensory-needs-met-with-a-body-sox/
Adele Devine is a teacher at Freemantles School for young people with autism in Surrey. She, along with her husband, have created a range of award-winning software for special needs, SEN Assist. She’s writing here on the Special Needs Jungle blog about how to make sure that children with autism are getting real benefits from computer use. Don’t miss Adele’s, 10 Tips for developing a healthy relationship with IT, included in the article.
Technology is motivating for most children, but to those with autism it’s more. The computer can become a safe place – it’s predictable, it’s got every motivator on the planet, it’s a world behind a screen that can involve and include.
Once they find this safe haven is it any wonder that the child with autism wants to be there every minute of the day? They might seem to become manageable and happy rather than ‘bouncing between the walls’, but we must look at what they are actually achieving on the computer.
Is the IT including or isolating, educating or babysitting?
Children with autism benefit from structure. If left to their own devices they might be on the computer all day and do nothing, but click between ‘youtube’ videos or sound files. So should we stop them? No, but we must to take control early on and structure their time. This way we will help them to develop a healthy relationship.
Temple Grandin (author and professor, herself autistic) believes that without “the gifts of autism” there would probably be no NASA or IT industry and most autism experts would agree. Bill Gates, founder of Microsoft (widely believed to have Asperger’s syndrome) demonstrates the possibilities if the computer ‘obsession’ is correctly managed.
There is also the ‘dark side’ of this relationship.
The computer can reduce social interaction, nurture obsessive behaviour or even misdirect skills towards illegal computer hacking. The ongoing case of hacker Gary Mckinnon, who faces possible extradition rings warning bells.
His mother Janis Sharpe says, “When Gary was nine, we bought a primitive Atari. He would beg me not to send him out to play so he could use it. We wanted him to mix more but we didn’t want to deny him the information, pleasure and security computers gave him. They were an outlet for him to be himself, and that boosted his self-esteem.”
So what should we do?
Richard Mills, director of research at the charity Research Autism, believes the answer is complicated: “The computer age totally changes the world of autism. Things are instant, and they are unregulated. We see tremendous advantages to this if it is properly managed – and huge pitfalls if it isn’t.”
Support for parents and teachers ‘managing’ this situation.
SENAssist software was created by specialist teachers to help develop structure from an early stage. It’s based on autism specific training, and years of practical teaching experience. SENAssist was created to be something to switch on and see work without having to know the theory first. By using ‘autism friendly’ structures and motivators from the start we secure the foundations for a positive relationship.
So what makes SENAssist ‘Autism Friendly?’
Animated writing with associated symbols
Visual and repetitive: Children with autism are often visual learners. The stories and activities have symbols that associate with the words. The writing is highlighted as the words are read. The first 100 high frequency words are repetitively used for the stories and activities.
SEN Assist activities are based on language activities used by speech therapists. The resources are based on PECs.
Speech Therapy: Activities are based on speech therapy, helping teach prepositions, pronouns and sequencing. Resources are designed to enable pre verbal children to answer questions.
Praise is also varied to extend the vocabulary.
Individual motivators: The first thing the child must do is choose their motivating character. There are 48 to choose from – pirates, dinosaurs, trains etc. This motivator stays on the screen throughout cheering them on.
The work system at the side will show how many tasks they have left to complete.
Work systems and token boards: A work system shows the child how much they must do creating a visual structure. The use of ticks and crosses on token boards is deliberate – they learn to accept seeing a cross when it is introduced on the computer.
Self esteem: It’s important to set a level to suit the child. We must set them up to succeed and introduce challenge gradually.
10 Tips for developing a healthy relationship with IT
The Education Resource Awards: SEN Assist wins the award for ‘Best Special Education Resource with ICT’.
SEN Assist has recently won the award for ‘Best Special Education Resource with ICT’ in The Education Resource Awards. The judges commented that “The Fairy Tales was an inclusive, interactive product that allows a wide range of students to improve their knowledge of high-frequency words. With logical lay-out, clear instructions and motivating images, the product will help to engage the learner. Additional printable activities also help to ensure that the teacher can offer further support”
You find find these innovative products at http://www.senassist.com/
Adele has kindly donated a copy of their Early Shakespeare software to More House School, an independent specialist school for boys with SpLDs and ASDs, attended by my sons.
Posted by Special Needs Mum on April 18, 2012
http://specialneedsjungle.com/2012/04/18/managing-the-relationship-between-children-with-autism-and-computers/
In the six years since our sons were diagnosed with ASDs, I have come into contact with a whole new set of parents – those whose children are also affected by autism and other special needs.
These people have very different parental experiences to those with ‘ordinary’ children. Most have experienced the disapproving looks from other parents at the school gates as their child has yet another meltdown; they have fought their way through the jungle of locating services and appropriate education for their children, often through the fog of exhaustion of worry and broken nights.
And yet, they are the most inspiring, determined and dedicated people I know. Some have taken up voluntary positions in support groups to help other, similar parents or have found other ways to use the skills they have to help bring much needed information to families coping with a life they didn’t expect.
Two such people are Gillian Loughran and Mark Hayes who are the parents of a child with autism, as well as both being national award-winning journalists. They created the quarterly Autism Eye magazine in order to provide in-depth, well-researched, useful information for parents and professionals who care for children with autism.
When their son, Finn, was diagnosed with the condition they found very little information available on how to help him. They launched Autism Eye so that other parents in their position, as well as professionals, could learn much more easily about new research, treatments and therapies that could help children with autism.
As well as a quarterly magazine, Gillian and Mark also publish news and features on the Autism Eye website, which can be found at www.autismeye.com.
Subscriptions to Autism Eye are available as printed editions and digital downloads, and are priced to be affordable to parents and carers. The subscriptions page is here: www.autismeye.com/subscribe
The latest issue has a feature on autism and nutrition – a must read.
Posted by Special Needs Mum on April 16, 2012
http://specialneedsjungle.com/2012/04/16/autism-eye-magazine-helping-you-to-help-your-child/
This week we’ve had sunshine, showers, hail as big as marbles and thunder and lightning… it must be April. I’ve whipped up some special needs stories and blogs that might have slipped your notice as you get over all that Easter chocolate.
As you read this over the weekend, I’ll be at a spa hotel with my husband, enjoying our carer’s break, leaving the boys and the dog in the capable hands of my mother-in-law. Have been instructed to leave my iPad behind and relax… if you spot me online before Monday, please tell me to log off immediately.
Posted by Special Needs Mum on April 13, 2012
http://specialneedsjungle.com/2012/04/13/tgif-and-a-chance-to-see-the-weeks-special-needs-news-views/
Recently I appeared in Woman magazine – a small section in a feature entitled, “Meet the regret-me-nots”
My piece was headlined, “I regretted becoming a full-time mum”, which isn’t strictly accurate – rather I found myself, like many mums who give up professional life for stay-at-home motherhood, feeling a certain wistfulness for opportunities forgone. I also experienced the loss of self-esteem that many women feel when they no longer have a full-time, possibly high-flying career. In fact, when I stopped being a television news presenter, even my own mother (herself a career woman) stopped boasting about me. After all, I was just a mum now, wasn’t I?
Well, I happen to think that parenting is the most important job that anyone can do – because done badly you can ruin the life and chances of another human being. And if I’d been at work, I may not have had the time or energy to work out why my children were different. The subtleties of Asperger’s can easily be missed or misinterpreted and that can lead to the child not getting the help they need to fulfill their potential.
You can, of course, be a great parent and work full-time and I would never suggest anything else – other peoples’ lives are simply none of my business. But for me, once I’d held my son, my decision was made. I think my colleagues were a little shocked that this ambitious, somewhat fierce, journalist could just walk away from what I loved doing so easily.
We had to move to a cheaper part of the country to afford it at the time, but my own chaotic childhood had left a deep yearning for a stable, traditional family structure and I’m lucky that, despite the special needs issues, we still have that. I’ve also replaced my career in the often soulless world of television news with something better – my family, my writing, the special needs work and my new job helping people affected by congenital limb differences. I’m a better person because of it. Maybe now my (sadly, late) mum would even boast about me again if she could!
Anyway, now a new issue of Woman is out, I figure they won’t mind if I post my own little piece here. You can find the Woman Magazine website here. Thanks to reporter, Nikki Osman, who wrote the piece. Click the image or the link below to read it for yourself.
My husband and I are off on a spa break tomorrow, courtesy of GP carers breaks in Surrey If you’re a carer in Surrey, you could be eligible too. If you know someone this applies to, please pass the link on to them.
Look out for the regular story round up tomorrow!
Woman Magazine 9April-Tania Tirraoro.
Posted by Special Needs Mum on April 12, 2012
http://specialneedsjungle.com/2012/04/12/why-i-turned-my-back-on-my-tv-news-career/
I recently met the chief executive of The Meningitis Trust, Sue Davie, and heard her talk about the hidden after-effects that meningitis can leave on children who’ve apparently recovered. The special needs they have due to acquired brain injury are often missed, but in this guest post, she explains how the illness can leave a long-lasting legacy.
Meningitis strikes fast but its impact lasts a lifetime. It’s a disease that can affect anyone, of any age, however children under five are the highest at risk group. People often think about the mortality rates of meningitis (sadly 10% of people will die) and the physical after-effects of the disease, such as limb loss (where septicaemia has occurred), but what few people understand is that 30-40% of children who survive meningitis will be left with other devastating after-effects. Some of these other after-effects can be hidden and may not become apparent until some years after the meningitis, most commonly causing difficulties at school.
c. Meningitis Trust
At the Meningitis Trust, research we commissioned has provided the scientific evidence to back up what we already knew from the thousands of families we have supported over the years. The research compared children who had survived meningitis with those of the same age who had not had it. Many differences were found, including:
Effectively, as difficult as it is for a parent to hear, their child may well have been left with what is known as an acquired brain injury (ABI) as a result of the meningitis. And there is little or no understanding or even acknowledgment of the impact of ABI on a child’s education. It is like the silent epidemic – inherent damage that may not be seen for years and is an evolving disability. Whenever special education needs are discussed, rarely if ever does it include the needs of those children who “acquired” difficulties.
An excellent publication, “Educating Children with Acquired Brain Injury” by Beth Wicks and Sue Walker highlights why children with ABI have different special needs including::
As the impact of meningitis and ABI generally is not understood by those responsible for identifying need, it’s not a surprise that it goes unsupported:
Alongside families, schools are the major providers of rehabilitation for children with ABI and yet the system that is in place lacks the knowledge of what has happened, its impact and how best to meet individual needs.
A report called “Missing Out” was produced in 2001 by the Childrens’ Acquired Brain Injury interest Group. A number of recommendations were made including around ABI awareness and education amongst teachers and educational psychologists. 11 years on and nothing has really changed.
The Meningitis Trust exists to support people affected by meningitis and we are now fighting on behalf of all the children who have survived meningitis to get them the educational support they deserve. Alex, one of our Young Ambassadors who was 8 when he contracted meningitis said “I thought being in a wheelchair was the hardest part – but I was so wrong. I found myself struggling with work that I could do before with my eyes shut” and he also said “It was not my fault I had meningitis – I still deserve an education”. You can read his story at this link in his own words.
And for parents it is a heartbreaking battle – this is what two mums said:
Meningitis may be considered a “rare” disease but there are over 20,000 children in the school system who have had meningitis and as many as 40% of these may be struggling. But ABI can be caused by many things and if you consider that every year there are over 500,000 children under 16 in the UK admitted to hospital for head injury, and more than 10% of children can have illnesses that can cause ABI (including meningitis) – it means the number of children potentially struggling in education without the support they need because of an ABI is huge. But the system continues to fail them because the impact is not understood – and that cannot be acceptable.
Children who have had meningitis have already had to fight for their lives – they should not now have to fight for their future. Support our campaign today – just go to www.meningitis-trust.org to sign our petition and see how you can help children like Alex.
Footnote:
Knowing the signs and symptoms can help to save lives and I urge you to ensure you have this knowledge close to hand. You can download our free meningitis app at www.meningitisapp.co.uk, go to our website or call our 24 hour freephone helpline (0808 80 10 388) and get a free credit card sized symptoms card. Why don’t you order some for everyone you know, your school/nursery etc. Remember, anyone at any age can get meningitis so everyone needs to remain vigilant. Having our information close to hand saves lives – we know because many people tell us.
If you have been affected by meningitis, you do not need to suffer alone, The Meningitis Trust helps people to move forward, providing free emotional, practical and financial support – just call us on 0808 80 10 388, email us at support@meningitis-trust.org or go to our website www.meningitis-trust.org. Or why not join our Facebook or Twitter
Posted by Special Needs Mum on April 10, 2012
http://specialneedsjungle.com/2012/04/10/the-lifetime-legacy-of-special-needs-left-by-meningitis/
Happy Easter! Why not spend a few minutes this long weekend to catch up on some of the past week’s special needs and disability stories?
Here’s my pick:
Got one of your own not listed? Why not add it in the comments…
Posted by Special Needs Mum on April 6, 2012
http://specialneedsjungle.com/2012/04/06/1096/
Netbuddy has been working with NHS Carers Direct to pass on practical advice, tips and ideas from carers of people with learning disabilities to other carers.
‘Real tips from real carers is a new tool created by NHS Carers Direct and Netbuddy. It offers a selection of tips submitted by carers under four separate headings – Communication, Healthcare, Personal Hygiene, Behaviour and Routine.
The tool is live on the Carers Direct website and a version of the tool is also available for people to put on their own websites.
Netbuddy director, Deborah Gundle said: “We are so pleased to be working with Carers Direct to share these great practical ideas from people with everyday experience of caring for people with learning disabilities. Working in partnership with other organisations like Carers Direct allows us to reach more carers who can benefit from Netbuddy. We really hope more people will come forward and ask for the ‘Real tips from real carers’ widget on their website.”
Carers Direct website editor, Rob Finch, said: “The best advice comes from experience. Netbuddy is an amazing way for carers to get the benefit of the experience of others in similar situations.Posted by Special Needs Mum on April 5, 2012
http://specialneedsjungle.com/2012/04/05/real-tips-from-real-carers-a-new-tool-from-netbuddy-and-nhs-carers-direct/
Provision for young people with special needs after they leave school is a big issue for many parents. Although technically adults, many young people with learning disabilities are far from ready to join the world at large.
A project in Surrey has just been launched to try to fill that gap for some. Project Post 19 was conceived two years ago by Robert Power, an Outreach Teacher who has worked in the special needs sector for over 15 years. Rob works closely with school staff to help students with diverse learning difficulties to achieve their goals in mainstream schools.
From September 2012, Post 19 will be offering a Community Learning Programme, based in Guildford. The Programme is aimed at young 18-25 year old adults with any learning difficulties across the spectrum.
Rob started Post 19 when he recognised a gap in the community support framework for adults with learning difficulties. The main objective of the Community Learning Programme is to encourage students to work and participate in their own communities.
Each student has his or her bespoke programme which focuses on the use of centres in their local community for example: the library, leisure centre, pub, post office, bank, corner shop, supermarket, available transportation, cinema and community centre. This active involvement with their own community is vital for improving confidence and communication skills.
The organisation is also working with Young Enterprise to create an inspirational programme specifically designed to offer our young adults the opportunity to create and operate their own start-up businesses.
Post 19 strives to educate not only its students, but the community around them as well. They take part in community education and work together with other community staff to offer a strong support network to all of the young adults. Group sizes are limited to between 8 and 10 and the staffing ratio is 1 to 3, depending on the individual needs.
The project is currently undergoing assessment by Surrey County Council’s Social Services Transition Team and Procurement Team in order to be acknowledged as a preferred supplier. Until that process has been finalised, funding for the Programme is by Direct Payment or Personalised Budgets.
Applications are also being submitted to the Charity Commission and the Care Quality Commission and Post 19 hope to be successful with both by Autumn 2012.
You can find the Post19 website at : http://www.post19.com/
Posted by Special Needs Mum on April 3, 2012
http://specialneedsjungle.com/2012/04/03/addressing-the-special-needs-post-19-provision-problem/
This is from the United Nations about World Autism Day:
The annual observance of World Autism Awareness Day should spur global action to combat the unacceptable discrimination, abuse and isolation that people with the disorder and their loved ones face, according to Secretary-General Ban Ki-moon.
Autism is not limited to a single region or a country; it is a worldwide challenge that requires global action, states Mr. Bans message for the Day, observed annually on 2 April. People with autism are equal citizens who should enjoy all human rights and fundamental freedoms.
In December 2007, the United Nations General Assembly adopted a resolution declaring 2 April as World Autism Awareness Day in an effort to draw attention to a pervasive disorder that affects tens of millions around the globe. Autism is characterized by varying degrees of impairment in communication skills and social interactions and in restricted, repetitive patterns of behaviour.
In his message, Mr. Ban notes that although developmental disabilities such as autism begin in childhood, they persist throughout a persons life.
Our work with and for people with autism should not be limited to early identification and treatment; it should include therapies, educational plans and other steps that lead us towards sustained, lifelong engagement, he states. Reaching out to people with autism spectrum disorders requires global political commitment and better international cooperation, especially in sharing good practices.
He stresses the need for greater investments in the social, education and labour sectors, since developed and developing countries alike still need to improve their capacities to address the unique needs of people with autism and cultivate their talents.
We also need to promote further research, train non-specialized care providers, and enable the autism community to more easily navigate care systems to obtain services that can support and mainstream individuals with autism, the Secretary-General says in his message.
Today in New York, Vienna and Geneva, the UN Postal Administration (UNPA) released six commemorative postage stamps and two collectible envelopes dedicated to autism awareness, with images created by artists who have been diagnosed with autism.
The stamps will send a powerful message to people around the world that talent and creativity live inside all of us, said Mr. Ban.
The UN is the only organization in the world which is neither a country nor a territory that is permitted to issue postage stamps. It is the only postal authority to issue stamps in three different currencies the United States dollar, the Swiss franc and the euro.
UNPAs chief, David Failor, told a news conference in New York that the selection process enabled the agency to discover the many hidden talents that people diagnosed with autism have.
Probably the best part of the process, that we learned, is the talents that some of these people have and working with their families and their relatives and their supporters, and what a great network of people that there is around the world that are really passionate about the subject and want to help raise awareness about it, he said.
UNPA originally intended to pick three designs to feature on each of the three denominations that it issues stamps for. However, the artwork received was so good that it decided to feature eight designs from among the 200 different pieces of artwork it received.
The stamps will go on sale in New York, Vienna and Geneva, beginning on Monday.
Posted by Special Needs Mum on March 31, 2012
http://specialneedsjungle.com/2012/03/31/world-autism-day-april-2/
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