Exciting news – a conference speaking invitation

I have exciting news – I am to be a keynote speaker at the forthcoming SEN Conference, Towards a Positive Future that is to take place in Newbury in June. I will be talking about being a parent of two sons with autism and how parents-carer forums such as Family Voice Surrey, of which I am a committee member, are helping to shape SEN services with the SEN Green paper pathfinders. Surrey will be trialing, among other areas, the proposed Education Health and Care Plan for which I attended a day-long meeting yesterday.

Apparently, children with existing SEN statements will not automatically be moved to an EHCP although their parents can request it. They may be moved at a transition point if appropriate, however.

It is clear from the meeting that there is much work to be done and in a relatively short time as it is expected the new procedures will be brought in by 2013/14. There are some positive proposals and still a lot of detail to be worked out, but the general principle is that the child and family should be at the centre of the process. It’s not very clear to me why this isn’t already the case.

The whole system at the moment is adversarial and there is much distrust on both sides, so to make the new process succeed there needs to be a major cultural shift towards working together for the benefit of the child. At the moment LEAs are (rightly or wrongly) seen as penny-pinching, budget-not-child focused parent-haters who are determined to give as little as they can get away with. LEA staff, meanwhile see some parents as just trying to bag a statement to get their children into the best schools that cost the council hundreds of thousands of pounds a year when (the LEA feels) local provision would do just as well. There are many parents left vastly out-of-pocket by legal fees as they pursue the most appropriate option for their child.

Personally, I can’t understand why any parent would head into the stressful, potentially expensive jungle of statementing unless their child has significant needs that are not being met within current school resources – I mean, why would you put yourself through that? Every parent I have encountered who is seeking a statement has experienced their child going through years of difficulties, under-achievement and unhappiness before they become convinced that this is the only route. I’m sure there are exceptions, but they must be just that – exceptions.

Anyway, by the conference in June I expect some parents will have been recruited for the trials and we will have more detail of how the final system will look. Other speakers include the National Autistic Society president, Jane Asher, Janet O’Keefe, editor of “Towards a Positive Future”, Educational Lawyer, Clive Rawlings and Kevin Geeson of Dyslexia Action among others.

Below is a link to a booking form that you can use with all the details on.

Towards_a_Positive_Future_Conference_2012_flyer

Labour SEN Policy Review – want to get involved?

This is taken from the website of Sharon Hodgson MP, but I thought it might be useful to post it here too, in case anyone hasn’t seen it and wants to get involved. I am already involved in a meeting on Monday for the Surrey Pathfinder trials for the proposed EHCP but this looks like an interesting opportunity for anyone interested in helping Labour form its own updated SEN policy:

_____________

SPECIAL EDUCATIONAL NEEDS – POLICY REVIEW, 2012

The Labour Party are seeking your views on how to build on the work of the last decade in improving educational outcomes for children and young people with specialeducational needs and disabilities, to inform their policies in the run-up to the next general election.

Review Panel :

  • Sharon Hodgson MP, Shadow Minister for Children and Families (Chair);
  • Cllr Luke Akehurst, Hackney Council and Labour Party National Executive Committee member;
  • Cllr Richard Watts, Executive Member for Children, Islington Council;
  • Alex Cunningham MP, Education Select Committee Member;
  • Young people’s representatives (tbc).

Purpose and aims

The review seeks to bring together children and young people with special educational needs and disabilities and their parents or carers, as well as those involved in providing for their needs, and those who champion better services and outcomes for them, to achieve the following aims:

  •  To examine the current landscape of provision for children and young people with special educational needs and disabilities, including highlighting examples of current best practice.
  •  To crystallise opinions on the Department for Education’s ‘Support and Aspiration’ Green Paper;
  • To work towards a clear pledge of what children and young people with special educational needs and disabilities and their parents or carers should be able to expect from education, health and social care services in identifying and providing for their needs.
  • To generate, and provide a basis for the development of, new and innovative ideas to improve the identification of and provision for children and young people with special educational needs and disabilities, while achieving the best possible use of limited resources.

Timeline

The review will be held over four distinct evidence sessions:

Session 1 – The Green Paper and next steps

Tuesday 28 Feb, 11.00-13.00, Committee Room 5, House of Commons

Scope: General discussion on the strengths, weaknesses, opportunities and threats from the government’s ‘Support and Aspiration’ Green Paper.

Ideal contributors: Any individuals, groups or organisations with an interest in the future of SEN provision.

Session 2 – Teacher training and specialist professionals

Tuesday 6 Mar, 4.30-6.30, Committee Room 5, House of Commons

Scope: Exploring ways of improving knowledge and expertise withing the education workforce, including whether to increase the time given over to SEN in initial teacher training and continuous professional development/INSET days, building on what is in the Green Paper on encouraging up-skilling.

Ideal contributors: Representatives of teachers/headteachers and early years professionals, ITT/CPD providers, local authorities, specialist staff.

Session 3 – Identification and provision

Tuesday 20 Mar, 5.30-7.30, Committee Room 8, House of Commons

Scope: How best to identify and provide for children with SENs, and establishing what parents and children should be able to expect from the various agencies involved in doing so.

Ideal contributors: Parents and young people, representatives of teachers/headteachers and early years professionals, local authorities, academies/free schools and PVI special schools/settings.

Session 4 – Accountability and the role of local authorities

Tuesday 27 Mar, 4.30-6.30, Committee Room 5, House of Commons

Scope: How to bring accountability back to provision, including what the role of local authorities should be, and what parents should be able to expect from it.

Ideal contributors: Local authorities, charities, parents and young people.

Following these evidence sessions, a report and recommendations will be drafted for submission to the Labour Party’s National Policy Forum, where they will then go forward for discussion at Annual Conference in the Autumn.

Conclusions reached will also form the basis of how Labour responds to future legislation and policies brought forward by the Government.

How to get involved

1. Attend a session

If you are interested in attending or speaking to any of the above evidence sessions, please e-mail sharon.hodgson.mp@parliament.uk stating:

– who you are representing (if not as an individual),

– which session(s) you would like to attend,

– and giving a brief outline of the points you want to make.

The review is particularly keen to hear from children and young people with special educational needs and disabilities and their parents or carers on their first-hand experiences of getting the support they need.

2. Send us your stories and ideas

If you do not wish or are not able to attend any of the sessions, you can still get involved by submitting your thoughts on, and experiences of, the SEN system tosharon.hodgson.mp@parliament.uk  in the same way.

Important notes

Ideally, requests to attend should be made at least 5 working days in advance of the date of the session, although allowances will be made if the session is undersubscribed; however, presenters will be finalised by said cut-off of 5 working days.

The capacity for each session is 50 people, with a maximum of 8 being invited to give a short presentation – following presentations, the floor will be opened to everyone else.

Where sessions are over-subscribed, every effort will be made to ensure as broad a range of attendees as possible, and confirmation of your place will be provided as soon as possible.

Sessions will be presided over by the Chair of the review panel or, if a division is called, another member thereof.  As time in the sessions is limited, it is requested that attendees give consideration to other attendees in the length of their contribution, and in not interrupting other contributions.

The Committee Corridor is wheelchair-accessible, and a limited amount of parking is available for those with disabilities – by prior arrangement.  Please state in your e-mail if you have any special requirements, and every effort will be made to cater for them.

All submissions will be retained and used as a basis for the final report.

Discussions and presentations at the evidence sessions are on the record – detailed notes will be taken, and you and any organisation you represent may be quoted in the final report and supporting documents, unless you specifically request otherwise.  Similarly, any submissions received will be regarded as eligible for publication unless you explicitly state otherwise.

The closing date for submissions is March 31st. Applications and emails should preferably be typed and submitted by email, but they may also be posted to the following address if you do not have access to a computer:

SEN Policy Review

c/o Sharon Hodgson MP

House of Commons

London SW1A 0AA

Any questions or clarifications can be sought by email at the address given, or by phone on 020 7219 0266.

Roaming the Special Needs web this week…

Another busy week in the news and blogs – here’s some of my favourites as well as a round up of posts on Special Needs Jungle in the past seven days. Add yours in the blog comments below

Games shops with a difference – mixing wargaming with sensory toys!

Little Games Shop LogoEarlier in the week I posted an article about Son2 and his love of Games Workshop. Today, I’m very happy to host a guest spot from Hilary Knight, herself the mother of a son with special needs. Hilary runs The Games Shop at Aldershot in Hampshire and the newly opened Little Games Shop, in Farnham, Surrey.  They stock all the usual stuff to delight boys young and old – but they are much more than that. Read on to find out more:

Our son aged 9 has special needs and attends a special school. Simple right? No, not simple at all!

I am a qualified nursery nurse, have a degree in Education Studies and Psychology and was a childcare inspector for Ofsted for the under 8’s before I had my daughter. How hard could it be?

We encountered major frustration over getting a diagnosis that didn’t include a conclusion of parental blame while home educating due to threats of him being expelled at 5.5. We walked through the equivalent of treacle getting an educational statement and it almost turned my hair white looking for a school that could meet his needs!

Getting resources or toys for him in the high street like chewy tubes, chewigems, theraputty was and is – IMPOSSIBLE! So, my husband, Rhys and I, decided to bring special needs toys and resources to the high street, working with two occupational therapists.

The Little Games Shop – helping children and adults with additional needs 

  • In our new Farnham store we stock a range of resources including Theraputty, Mr Face, sensory toys, sand timers, chewigems, feely boards, card holders, larger piece puzzles, large print scrabble, pocket money toys as well as the usual mainstream games, puzzles and some really great wooden toys. Soon we are stocking handwriting equipment, weighted blankets etc. We can source products for parents and are working with local SENCo’s. We can mail them out without postage and packing costs.            
  • We don’t believe in inflated prices just because it has the tag line of “special needs”
  • We work with two Occupational Therapists who on hand to advise regarding equipment and resources. Both OT’s have experience of children with additional and sensory needs – Caroline Winfield and Louise Williams.
  • All staff have childcare qualification and/or are parents. On Saturdays we have Veronica who has worked for the National Autistic Society and has  completed courses in ASD and Young People, Social Stories Workshop and also has personal knowledge of ASD.

The Games Shop, Aldershot – 3 floors above the shop with refurbished rooms. – helping children and adults with additional needs:

  • The first Tuesday of the month during school terms, SOS! SEN the special needs advisory charity, hold an advice surgery for parents/carers to navigate their way through the SEN system (without them my son would still be home educated and very unhappy), from 10:15-12:15. No appointment necessary and no fee, although a donation is always welcome.
  • Hampshire NAS hold a social skills group for children every Saturday in Games Room 1 for children who live in Hampshire: Contact Kate Nixon on Tel: 01483 869 553
  • Every Friday from 6-9pm we hold an under 16’s Wargaming club. The shop is a Games Workshop Premium Shop and Rhys used to be a manager for GW. The event is held in the “war room” with two members of staff with bags of knowledge and passion for the game. Come along and paint your army, get expert tips, play Warhammer or Warhammer 40,000 or make/paint your own scenery. Children with additional needs are an asset in this activity with their knowledge and memory and the game can so easily be adapted.
  • Pokémon. We are very lucky to have our own Pokémon professor! Not only is he bursting with passion for the game, but as a qualified nursery nurse, he activity promotes reading and sportsmanship. He will happily show new members how to play and a more suitable time can be arranged for beginners. Saturdays is Pokémon league 10:30 to 1pm.
  • We also host Yu-gi-Oh and Magic the gathering card games on Fridays.

Contact the shop for more info.

Finally, all three rooms plus the War Room are for hire and room rates start at just £10.00 per hour. Rhys has hosted GW parties very successfully as well as LEGO parties all, of course, adapted to the children’s needs and interests.

Just shops that sells traditional games, card games, collectibles, pocket money toys, puzzles, wooden toys, Games Workshop, LEGO? Not our shops!

Pop in Aldershot and say Hello to Rhys or pop into Farnham and say hello to Hilary.

  • The Games Shop, 6 Wellington Street, Aldershot, Hampshire, GU11 1DZ Tel: 01252 311 443
  • The Little Games Shop, 4 Cambridge Place, Farnham, Surrey GU9 7RX Tel: 01252 713313

The Little Games Shop also has a Facebook page with lots of info and conversation!

Conference for parents of children with special educational needs and professionals

National Autistic Society president, Jane Asher, will be speaking at a conference in Newbury, Berkshire, in June for parents of children with SEN and associated professionals. The agenda will be published soon but the flyer is below and a downloadable pdf version is at the bottom.

Towards_a_Positive_Future_Conference_2012_flyer – Download as PDF

 

Games Workshop – the perfect hobby for Son2

Until recently, Asperger’s Son2 had no interests that didn’t involve a computer or a games console.

Son2 explains the rules to his Dad

He used to love Lego, but that faded into the background the older he became. He used to spend hours reading and memorising Horrible Science magazines, but that too, petered out. He spends far too much time playing Xbox but at least half the time he’s playing Xbox Live, talking to his school friends as they play together, remotely.

Over the summer however, he became interested in wargaming. Not computerised, but Games Workshop wargaming, painting figures and playing board games with them. This was a revelation and we’ve been quick to support him. This entails spending vast amounts of money on Orks (for my husband to play with him) and Space Marines (for him) as well as Codex books, paints and carry boxes.

Most Sundays I take him to Games Workshop where he paints alongside a few other boys, instructed by the fantastic guys who run the store. These guys are amazing – always on hand to help in a low key, let-them-get-on-with-it sort of way. They’re not teachers but my son is learning valuable skills both social and practical.

Dad being resoundingly thrashed at a game by Son2

Son2 has dyspraxia and has always found art, painting and writing incredibly difficult. But the care and detail he puts into painting his Space Marines is a joy to see. I’m certain it’s improving his fine motor skills which should improve his school artwork. He’s also learning from Nick, the GW guy, more about rules and how to play the games. Strangely, there’s always a little something Son2 decides he needs to buy at the end of the session as well.

It’s not wholly surprising that he’s picked a hobby that involves collecting and being immersed in a scenario – but if it’s improving his communication skills with real people, I’m all for it.

So even though on most Sundays, I can be found wasting two hours wandering around the adjoining shopping centre or sitting in Starbucks on my iPad as I wait for his session to finish, it’s worth it – just to see him interacting with something that doesn’t need plugging in.

The basic gaming table

Best of all, he’s enjoying himself and it’s a hobby my husband can enjoy with him as my husband sculpts his own figures – not fantasy but World War II. This game in the pictures lasted two days and Son2 thrashed his Dad, much to his delight.

What’s your special needs child’s favourite pastime?

Special needs stories you’ll want to read this week

Some great stories and blog posts about special needs that I spotted this week. If you have one of your own, add it in the blog comments below!

Want your SEN product or service listed on the Special Needs Jungle site?

Special Needs Jungle has lots of visitors every day ranging from parents & carers to SEN professionals. It has many email subscribers and is also available for subscription on Kindle.

The site has a page where links to SEN sites and resources are listed. If you would like to have your SEN resource or product listed, please use the contact form to get in touch.

This service is free for parent support groups and SEN/Disability charities. For other companies, there is a £20 a year donation fee that will go to More House Special School in Farnham for its fund to build a School of Engineering.

More House School educates boys from 8 to 18 who might be bright but who have some form of learning difficulty that impedes their progress in mainstream school.

If you know of a company who might be interested in taking advantage of this offer, please forward this link to them.

What did you miss? Special Needs stories from the last week

It’s a bumper round-up of special needs stories and blogs this week – check out what you might have missed:

Got one of your own? Add it in the blog comments.

TOTS 100 - UK Parent Blogs
familyholidays.co.uk

Josh’s book aims to help parents of Asperger’s kids

Raising Martians - from Crash-landing to Leaving HomeA student with Asperger’s syndrome has written a book to help parents who have children with the disorder.

Joshua Muggleton, 22, a student at University of St Andrews, wrote Raising Martians to help parents understand the minds of their children.

The book has a foreword from from world-renowned Asperger Syndrome expert, Tony Attwood. Opening with the very basics of what autism is, Joshua covers mental health, sensory issues, obsessions and rituals, friendships and social situations, and shopping, travelling, and holidays, before tackling what is arguably the biggest challenge of any Aspie child’s life: school – and with it, bullying, homework, and other challenges. Providing the inside track on Asperger Syndrome in childhood, he describes practical ways in which parents and teachers can help, and offers a wealth of advice and helpful hints and tips for approaching common difficulties.

Josh, who is from Surrey and is a member of the National Autistic Society, said the book title came from the idea that “raising a child with Asperger’s can feel like raising an alien”.

The fourth-year psychology student said: “People with Asperger’s have a lot to contribute to society but there is very little education out there for parents and teachers. Education is something of a silver bullet when it comes to helping young people with the condition and without it, deep-set problems can develop at school age.

“My book offers a more personal insight because it’s been written by someone with the condition and not a clinical psychologist. Every child is different but I try to put the parents in the child’s shoes and facilitate some understanding.”

He has been signed up to write a second book to help make research into Asperger’s more accessible to parents and teachers.

He said: “The way I see it, I could either lash out or try to make a difference. There are kids out there having a harder time than me, and adults too, and if I can help just one person, this is my chance to give something back.”

“There is lots of information in the book, and I really hope that people take that on board, but to me, what is more important is that they gain an understanding of, and an insight into life with Asperger Syndrome. If you understand someone with Asperger Syndrome, then knowing that it is named after Hans Asperger is redundant. While that sort of information might be interesting, it is far more useful to know how the person with Asperger Syndrome thinks: what he or she might find hard and why, what things might set them off, and what things will calm them down, what things they will be really good at, and what things they might struggle at.”

Source: PA, JKP Publishing

Find the book on AmazonUK  or AmazonUS or at JK Publishers

 

Hyperbaric Oxygen Therapy for children with autism

An interesting new treatment for children with ASD is Hyperbaric Oxygen Therapy (HBOT). A 2009 study showed it can have beneficial effects on the symptoms of autism and a 2011 study on Thai autistic children showed that 75% of children showed some improvements.

Jeff Birnberg of Andi Hyperbarics writes here exclusively for Special Needs Jungle explaining how HBOT works:

“What is Hyperbaric Oxygen Therapy (HBOT)? If you’re like most people, you just drew a blank, but if you are a diver who ascended from depth too quickly or someone who was struck down by carbon monoxide poisoning and in both cases lived to talk about it, in 99% of those cases it was HBOT that saved your life.

If you suffered a stroke or traumatic brain injury and were treated with HBOT, you were the fortunate recipient of a treatment that helped to restore some or all of the functions you lost. If you are the parent of a child who had been diagnosed with Autism* and included HBOT as part of the treatment protocol, you most likely saw improvement in your child’s health and wellbeing.
At sea level, the body breathes ambient air, absorbing about 21% Oxygen (O2); this is the most oxygen the hemoglobin can absorb under normal circumstances. This oxygen is then distributed throughout the body via the bloodstream. But what happens when, as the result of a bodily injury, or degenerative condition, the supply of O2 is decreased or lost completely? The cells begin to shutdown and of course will eventually die. The result is the retardation of or the complete loss of cell function and the consequent reduction of or elimination of body and brain functions associated with those cells.
With HBOT, we create an environment where the air pressure is greater than sea level and the person breaths medically pure oxygen; oxygen, generally at 93% to 100% purity.  As a direct result of the increase in air pressure the oxygen will now be absorbed into the body’s fluids. Those same cells that were in suspended animation or dying from lack of Oxygen will begin to receive O2 via the body’s fluids and responding; will begin the process of healing.

Will HBOT work for everyone? No. For those for whom it does work, are the improvements in health and well being worth the time and investment needed to see results? Absolutely!
There are options for receiving hyperbaric oxygen therapy. There are hospitals and private clinics run by GPs; the cost ranging from £100 – £200 per hour. There are charities such as the MS National Therapy Centres**, which will consider treating autism and where the cost is minimal. There is also the option of purchasing a soft portable hyperbaric chamber which can be placed within one’s own home and operated solo or with the assistance of a trained family member. Chambers for home use are more convenient, eliminating the time and difficulties associated with travelling to a remote location. It’s also much less costly over the long term, making it possible for families or even families acting together to share a chamber, to provide a treatment that has helped so many.

Links:

SEN stories in the past week

Interesting special needs stories from the last week. If you have one I missed, leave it in the comments!

Kosovan special needs parent group appeal

A Kosovan special needs parent group has been in touch with the UK website Netbuddy, looking for help. They are asking for donations of special needs related items, so if you have got anything you can spare that you think might be useful, please send it to 7 Wildwood Road, London NW11 6UL by 2 March or drop it off in person to the same address on either 19 or 26 Feb.

One to One Childrens Fund, which is a UK charity working in Kosovo, will take your offerings there for us. This is an opportunity to help families and carers like ourselves, who are managing with far fewer resources and very little support. Please help!

Items that would be of use include:

* Sensory and cause and effect Toys * Adapted Toys * Clothes * Toiletries * Glasses * Adapted Cutlery/cups/plates * Adapted clothing * DVD’s * CD’s * Waterproof Mattress covers * Bibs * Feeder aprons * Sleep suits * Changing mats *

Anything else you can think of gratefully accepted!

Many thanks,

Emma and the Netbuddy team

Poll results – Should children with Asperger’s automatically be statutorily assessed?

Last year I published a poll on this site asking whether people thought children diagnosed with Asperger Syndrome (quick, use the term before it’s abolished!) should automatically receive a statutory assessment by the local educational authority.

I posed three potential answers:

  1. Yes, because teachers aren’t trained to spot underlying difficulties
  2. No, we should just see how they get on
  3. No, we should trust the school to decide what level of help they need

Now, I assume that most of my readers are parents with SEN children but there are also readers who have a professional interest in SEN, so I admit that the results may be skewed somewhat. Having said that, a whopping 96 per cent of respondents thought that AS is so complex in its presention that children with that diagnosis should receive a professional, school-based assessment to determine their special needs.

This isn’t to say that they should all be statemented (or get an EHC Plan as it will be), but most respondents believed that it is important to understand what their needs are and how they can be met to level the playing field, giving them an equal chance of success at school and beyond.

3% though we should see how they get on and just 2% thought that teachers were best placed to decide the level of help required. There were more than 150 responses.

I am a firm believer that school success and success as an adult does not depend on academic achievement alone. We all hope that our children, whether they are ‘normal’ or whether they face additional challenges, will grow up to be rounded, socially adept individuals. Even in this age of web interconnectedness, knowing the correct social response in a face to face meeting is still vitally important. We are, after all, social beings.

I know this only too well from my own sons. Even though our eldest is incredibly bright, we could see that he had many social difficulties and these, in turn, affected his school experience and academic achievements.  We did not want him to turn out to be an angry alienated genius and, thanks to interventions, support and the right school, he won’t be. Without an assessment that I fought for and drove forward, we might still be asking ourselves.. but he’s so bright.. why does he do this or that, it makes no sense.. (I’ve talked about his issues previously, with his agreement, now he’s a teenager I have to be careful what I say).

I say whatever you call Asperger Syndrome in the future, and whatever you replace statements with, when parents suspect their child has social difficulties they should always raise the issue with teachers and do their own research as well.

Some difficulties experienced by children with high functioning ASD can seem obscure and hard to verbalise. Yet if they go unaddressed, they can end up having a long-term negative impact on a child well into adulthood. I believe that every child on the spectrum should have an Ed Psych or Outreach assessment so that teachers who are not experts in autism (nor would most claim to be) can be given help to ensure that every pupil they teach has a fair chance of a decent learning experience.