The TES SEN Show – SNJ will be there! (Early bird seminar offer)

You might have seen a logo top left on the site about the TES SEN Show in London on 11th & 12th October.

SNL12-mini-imageThe big news is… SNJ will be there! Large as life, Stand 45, me and our Debs and maybe some other contributors as well, as it’s over two days. Even better – it’s FREE to attend the show and  workshops.

There are also seminars which attract CPD points for practitioners and there is an early bird rate until 24th July so don’t delay!

We’re so excited to be invited and are currently figuring out what to have on the stand – but you can guarantee we’ll cover lots of SEN resources about the things we write about – and of course the very excellent SNJ pens! It’s worth coming just for one of those.

We aim to be the most informative stand at the show – so why not let us know what kind of resources you think would contribute to a great stand in the comments below?

Check out the information below for all you need to know whether you are practitioner or parent. And don’t forget to stop by and say hello if you visit!

TES Special Educational Needs Show, London
Business Design Centre – 11th and 12th October 2013

Come celebrate a world of SEN at the UK’s longest running SEN show!

 image001

TES Special Needs London is back this autumn and it’s bigger and better than ever. It has the resources, ideas, advice and CPD to provide teachers, SENCOs, support staff and parents with the tools and skills to help all achieve their goals.
Special 21st year

  • Join us to celebrate 21 years of being 100% dedicated to SEN. Celebrations include VIP/Celebrity host, My SEN mobile app, Cake, Presents, special show discounts and competitions galore.
  • New CPD Seminars Always 100% dedicated to SEN: within our inspiring 2013 CPD seminar programme you will learn about the latest issues from top SEN professionals.
  • Fantastic free workshops
  • Discover thousands of resources to compare and buy for every kind of special and additional educational need.
  • In celebration of our special 21st birthday, we are giving all those attending the fantastic ‘My SEN’ mobile app that will ensure you get the most out of your TES SEN show experience. My SEN will be available for download to all attendees in August.

Register for free and get your hot seminars tickets now before the summer holidays begin!
Early bird discount ends 24 July after which only standard ticket price will be available.

  • Visit our new website for all the latest news.    

 

Pupil ranking plans are an epic fail for SEN children

Oh dear.  We’ve always said communication is an issue with the SEN reforms but it’s fairly obvious that it spans education as a whole.

Can someone please let David Laws and Nick Clegg know about the reforms going through and let them have the memo about “promoting inclusion”.

When the Department for Education launched the Green Paper, two of their proposals were to give parents a real choice of a range of schools and give children with statements the right to express a preference for any state-funded mainstream or special school.

However, this morning Mr Laws and Mr Clegg have announced a consultation about plans to change performance measures for schools.

  • Pupils aged 11 would be ranked in 10% ability bands across the year group
  • Test results would be divided into bands of 10%
  • Parents will be told how their child “measures up” to their peers
  • A tougher minimum level of achievement for schools (below which an Ofsted inspection would be triggered
  • This is currently 60% for Sats tests but would rise to 85% under the proposed change

So, let’s just consider this.

  • Would a mainstream school realistically welcome children with SEN if this could risk bringing their minimum level of achievement below 85%?
  • As a parent of a child with SEN, I already know that my child is not achieving at the same rate as their peers.  Will introducing a new measurement help them to do better?
  • How would a young person with (or without) SEN, who has tried to the very best of their ability, feel when they find out that their hard work wasn’t good enough and they were banded in a low percentile?  Will introducing a new measurement help their often already-fragile self-esteem?
  • Is it just a rumour or do all children develop at different rates, based on their age and family dynamics?   Will introducing a new measurement put a stop to that nonsense?
laws

Epic Fail, Mr Laws

Speaking on BBC Radio 4 Today programme, Schools Minister, David Laws said he thinks that levels such as 2a, 3b, “Mean almost nothing to parents,”  

Well, here’s a suggestion, why not just explain to parents what they do mean?  That would be an awful lot cheaper and as a parent of three children, I found out what they meant (and any parent who is interested in their child’s progress will have done the same).  

Therein lies the issue, there will always be parents who are more engaged than others and introducing new methods of measuring children’s achievements won’t encourage parents who are not engaged to suddenly become the type of parent who pushes their child to do better.

Mr Laws also said that the individual score won’t be published nationally and children won’t be told the results, only the school and parents will know.  How does he think parents will find out how their child measures up?  Would that be a letter being sent home via their child’s school bag because we all know that children will never look at them?  Or are we going to put the results online and password protect them – because no child can ever access the information that way, can they?

And parents are not going to discuss it with each other or their friends within ear-shot of the kids? And the kids aren’t going to just ask outright? Or brag if they got a great score within the hearing of less able or SEN children?

This has to be, in our opinion, one of the worst thought-out proposals to have come out of Westminster for quite some time!  Transition to Secondary is an issue for all children, especially those with SEN.  However, the proposals being presented today show a real lack of understanding of children, SEN, parents, schools and inclusion.

If I was to score this proposal, in the manner being proposed, it would definitely be in the 0-10% band.  Mrs Laws and Mrs Clegg, I am sorry to have to tell you that your sons are performing way below their peers (but don’t worry, we won’t tell them if you don’t).

Kilimanjaro Update – no casualties so far!

Tania writes…

A quick update on the 17 boys, all with some form of special needs, including my eldest, who’ve headed off from More House School in Frensham to climb Kilimanjaro and build facilities at their twin Shia School in Tanzania.

They’ve all arrived safely, are haggling and buying their own food and cooking for themselves, doing acclimatisation treks to prepare for the climb and even practising some Swahili. No casualties reported so far, though I am still worried that five pairs of pants for a month just isn’t going to cut it.

Below is from the front page of this week’s Surrey and Hants News by journalist Henry Ascoli who asked if he could focus more closely on Luca so that the readers would understand more about what a challenge it is for these boys in particular.

Fingers crossed they stay safe and I’ll let you know how they get on.

For me however, the challenge will be to get his younger brother into school for the rest of the week before Founder’s Day on Saturday, a morning that is always a test of endurance, high emotion and anticipation seeing which parents have deepest pockets to bid on the yearly auction (Hint: it won’t be us).

It’ll be hot, so I advise any new parent at our school to have fans, water and tissues (for joyful tears) at the ready, as the boys (all 400+ of them aged 7 to 18, except for those below) collect their end of year certificates and we laugh as Mr Yeoman pokes cruel, yet caring, fun of the sports teachers once again.

Kili

Labels: Love or Loathe them?

Deb writes…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Why should a label change that?

Parent Carer Forums

Debs writes….

Tania and I are both co-chairs of Parent Carer Forums and we do mention them quite a lot.

Tania Co-Chairs Family Voice Surrey with the lovely Angela.  Angela shared her experience of meeting Mr T with us on Valentine’s Day.

I KentPEPsLogo92dpiRGB_web2Co-Chair Kent PEPs with the fab Sarah, who knows when to reign me in and also is one of the most organised people I know.  Sarah will be the person who has printed everything off before our meeting and the one who replies to emails quickly.

What is a Parent Carer Forum?

A parent carer forum is a group made up of parents and carers of disabled children who work with local authorities, education, health services and other providers to make sure the services they plan and deliver really meet the needs of disabled children and families.

The forum represents the views of parents in the local area but does not advocate for individual families. There is usually a steering group of parents who lead this and listen to the views of other parents in the local area to make sure they know what is important to them. Forums are keen to make contact with as many parent carers as possible.

In England there are now forums in almost all local areas.

Who can join a parent carer forum?

Forums are ‘pan disability’ which means that parents or carers of a child with any type of additional need or disability are welcome to join – as they are likely to need to access services and support. Joining your forum does not mean you have to commit lots of time. In most forums you can join and receive information, and you then decide if you want to get more involved at your own pace.

Taken from Contact a Family website 

We are all part of a National Network of Parent Carer Forums (NNPCF) which is  a network of parent carer forums  across England. It too has a steering group made up of parent carer representatives from across England.  NNPCF make sure that parent carer forums are aware of what is happening nationally, and that the voice of parent carers is fed from local parent carer forums into national developments, working with the Department for Education, the Department of Health, and other partners.

Contact a Family support the work of the National Network of Parent Carer forums and offer us relevant training and a variety of conferences and regional meetings.

If you would like to find out if you have a local Parent Carer Forum, then we have added a page to our site with their details for you.

If you are a member of a Parent Carer Forum steering group, we also have a group on Facebook which you are welcome to join.

Gcontactetting involved with your local Parent Carer Forum is such a great way to have a say and really help to influence decisions made about services in your area.  Most of the forums are always looking for new members to participate so get in touch.

Ten things I wish, with hindsight, I had known

Debs writes….

As we go through the Special Needs Jungle, we pick up tips, we gain confidence and we often think “I wish I’d known …….. at the beginning”

I wanted to share with you the ten things I wish I had known (or had the confidence to believe) when we entered the Jungle.

  1. When you sit in the room with the practitioners, you are an expert too. You may not be an expert in your child’s diagnosis (yet); you may not be an expert in what services are available for your child but you are an expert in your child. You know your child better than any practitioner. So at your next appointment think “I know my child and I bring this expertise to the meeting.”
  2. 1401629_dancing_girlsIt’s okay to take a friend to an appointment. Not just for support but also to take notes. Someone who, after the meeting, can help you to remember exactly what was said. I have walked out of so many appointments and thought “what was it he said about…….”. They can also be the person who can take your child out of the room when you want to have a discussion you don’t necessarily want your child to hear. Taking a friend is not a sign of weakness or even seen as confrontational, it’s just support when you really need it. Often our friends without children with SEN wonder what they can do to help us – let them help.
  3. It’s okay to feel sorry for yourself sometimes. I really tried to bottle those feelings up and pretend that I was okay, that I was coping when inside I wanted to shout “why me, what did I do”. I would sometimes avoid my friends who didn’t have children with a diagnosis because I wanted to ask “what did you do differently, why do you not have to deal with the same things I deal with”and then I felt guilty for thinking this. But guess what? It’s normal. So many parents of children with SEN go through this, especially at the beginning when you are learning how difficult this system is, this system you are involuntarily dealing with. Don’t bottle it up. When I have a day like this (and I still occasionally do), I stay indoors, I turn off my phone and I cry. Then I get myself back up off the floor and I have stopped feeling guilty for being human.
  4. 1321733_broken_heartSometimes it is going to hurt. When you get a diagnosis, even if it is a diagnosis you have been fighting for because you know the label may help to get the support, it can still hurt. Just because you are expecting it, don’t think it will hurt less. It may not. When I got the diagnosis of hydrocephalus, it was unexpected and it hurt. However, when we went for the diagnosis of ASD, I was expecting it, I knew it was coming and I knew it would help but it still didn’t hurt less when it was confirmed. I can still remember sitting in the car on the return journey and feeling like my world had been turned upside down. I can still remember people saying “what are you upset about, you knew they were going to say this” but do you know what, even though I find this hard to admit, I wanted to be wrong. I wanted them to laugh at me and say “you silly neurotic woman, why would you think he was autistic”. But they didn’t and it really hurt. Then, years after the diagnosis, you will have reality checks and they may hurt. This morning I suddenly had this realisation that I won’t be able to just scribble a note for my son when he’s older. If I have to nip to the shop and maybe he’s in bed, I won’t be able to stick a post-it note to the door saying “nipped to the shop, back in 5”. Yes, I will be able to braille him a note but where do I leave it? I know we will come up with a solution but just this morning, I had a reality check and it hurt.
  5. It is stressful. When you are pregnant with your first child, everyone with children will take great delight in telling you how stressful it is, how this child will change your lives and you may think you understand what they mean – until your child arrives. It’s the same with the system, I can tell you it will be stressful but until you are going through it, it is difficult to understand exactly what I mean. At Kent PEPs last year, we asked parents how they dealt with stress and also, more importantly, how they knew they were stressed. We produced a leaflet for parents with advice and tips from parents in the same position. It’s our most popular download.
  6. Don’t get to crisis point before asking for help. In Kent, we have to go via our Disabled Children’s team to get direct payments and so many parents, who would benefit immensely from this service, refuse to access it because it means involving a social worker. We asked parents recently what would put them off and the main response was “fear of admitting you were finding it hard to cope”. Please don’t wait until you can’t cope before you ask for help. Admitting you are finding it hard is a sign of strength, not weakness.
  7. c&fbillimageI wish I had known more about the law or that there were statutory bodies and charities set up to help parents of children with SEN law. Several websites (including this one) and charities are there to give you advice on SEN law and your local Parent Partnership Service is there to give advice on SEN educational law. There is a huge list of Acts, Conventions and guidance out there to help protect our children but often, you only find out about them when you have already been through months of stress. Even if you do not have the time or ability to read and understand The Equality Act or the new Children and Families Bill, there are others that do. Try to think ahead and find out where you can get help before you need it. .
  8. You will get turned down. I remember the first time I was turned down after applying for support for my eldest son. I had presumed that common sense would prevail and he would get help because he needed it. When I was turned down, I was really shocked. I took it personally, I thought perhaps I hadn’t made it clear, perhaps I had offended someone, perhaps it was me they were saying no to. Having three children with SEN, I soon realised that the system can often be a case of “apply, get turned down, appeal”. I eventually stuck an A4 sheet with these words written in red, yellow and green on my fridge as a reminder that this was not my error, it was down to the system.
  9. You will meet some amazing people. I have met people who inspire me, who motivate me to carry on and people who I feel privileged to have in my life. Most of these people live this, they don’t do it for a living (but there are exceptions). A lot of the parents I know who are involved with their local parent carer forums are amazing to me. Some of these parents have found their way of dealing with the stress, they get involved and try to influence change. Not all parents are ready for this or want to be involved but I am so pleased to be part of the group.
  10. super_hero_flyingI am not Superwoman. If I had to choose one thing I had known at the beginning, this would be it. The hours I spent trying to achieve the un-achievable! Superwoman is a fictional character who does not have children – and definitely not children with SEN. Trying to be everything for everyone all the time is not possible. Spending your days thinking “I should have”, “If only I had”, “I wish” is never going to lead to a good place. Neither does comparing yourself to another parent who is perhaps involved with so many different things that they make you feel like a failure. People deal with things differently, some choose to get involved with forums, some choose to set up support groups, some want to go along to a support group and others just want to avoid support groups like the plague. Whatever works for you is the right thing – for you. You can always get involved or step down from involvement at a later date. You have to take time for you, you have to choose your battles and you have to remember there are only 24 hours in a day. Focus on what you have achieved, not just the things you believe you have failed in. Sometimes, getting through the day without breaking down is an achievement. Celebrate it. Getting dressed can be an achievement, as can making it to an appointment on time. Celebrate the achievements, no matter how small you think they may seem to others. You will know what it took for you to achieve it, so say “well done” and feel good about yourself.

What do you wish you had known? These are my ten things, they may not be yours. More importantly, what achievement are you celebrating today?

Rare Disease Day: How Dan’s rare disease didn’t stop his mainstream education

facebook-profileRare Disease Day is at the end of February, with the theme ‘Disorders without Borders’. In Europe it’s coordinated by EURORDIS, the European Rare Diseases Organisation.

Many children have special needs because of a rare disease that may present extreme difficulties with being included in mainstream education. Many others, however, whose condition is physical and not a learning disability, simply need support to help them manage the classroom environment on a practical level.

One person such as this is Dan Copeland. I met Dan through my work with DysNet Limb Difference Network. Dan has TAR Syndrome and was only the 18th person recorded in the UK with the disorder. Despite his physical difficulties, Dan, from Liverpool, impressed me with his cheerfulness, humour and can-do attitude.

Dan, now 23, is a student and works part-time as a DJ. Below is the first part of his story, with a link through to the remainder that’s hosted on the RareConnect DysNet rare disease community.

***

Dan Copeland

Dan Copeland

My name is Daniel Copeland and I have a very rare syndrome called TAR syndrome which is short for Thrombocytopenia with Absent Radius.

This means I have a low platelet count which causes me to bruise and bleed more frequently and when my blood count is low it causes me to catch viruses more easily than others. I also have no radius bone in my forearm, the rare thing with this is the fact in most genetic cases if the radius is not present then neither is the thumb. But with TAR there is a thumb, although the tendons and ligaments are connected to the ulna bone which causes the wrists of the affected to be turned inwards.
As so little was known about my syndrome as a child, initial diagnoses from knee and hand specialists were not good, telling my parents I would be unable to do basic things from feeding myself to dressing myself. When I was due to start nursery and primary school, the boards were trying to push my parents into sending me to a special school even though all my problems are physical and not educational.
Through my whole educational experience, fitting in was difficult when I started at a new school and college but I quickly integrated into a normal social lifestyle. There were some other disabled children in my school but not many (about six in my school year) so integration with able-bodied children was extra important so as not to become isolated…

Read More of Dan’s story on RareConnect

 

Read our second Rare Disease Day post: My son has Ehlers Danlos Syndrome

Chinese Whispers and Garth’s Uncle

As you may have read on Friday, Special Needs Jungle has a new regular contributor in Debs Aspland, the director of Kent PEPS and parent of three children, all with disabilities. Today is her first post about the essentials of good communication.

Communication:  the imparting or exchanging of information or news

It sounds so easy.  It requires one person (the sender) to give another person (the recipient) a piece of information.  The communication is complete when the person receiving the information understands what the person giving the information has said.  So why is it so difficult?

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My pick of parents’ guest posts on Special Needs Jungle this year

SNJ-logo smallIn the last year I’ve been lucky enough to have had many parents write about their families and the issues they face raising children with special needs. These woman have a lot to share from their experiences that can help others in a similar position and so, as the year nears an end, I’d like to showcase them here in case you missed them when they first appeared during 2012.

Charlotte’s amazing brain – a heartfelt story about childhood stroke

Charlotte Neve was just seven when disaster struck. Her mother, Leila, has had to face the ultimate horror for any parent and even now, Charlotte has a significant brain injury as a result of her stroke that they are facing with the same determination as they did in their early, dark days when even survival wasn’t assured.

Read More

Advice for SENCos – the parents’ perspective from Hayley Goleniowski

Hayley was recently invited to address a group of SENCos as the neared the end of their three year Masters’ degree course. Their tutor hoped Hayley’s experience could provide the missing ingredient to the course – that of the parents’ perspective.

Read More

When the words move by themselves – it could be Visual Stress

I met a lady on Twitter a while back, Michelle Doyle, who was talking about ‘Visual Stress’. I wasn’t really clear about what this was so Michelle has kindly written about it for Special Needs Jungle about how it affects her son and her fight to get him the support he needs.

Read her story:

Pathological Demand Avoidance – one family’s story

Pathological Demand Syndrome is increasingly being recognised as being on the autistic spectrum. People with PDA will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control. One mum, Deborah Rourke, has written for Special Needs Jungle about her son, who has been diagnosed with PDA and their fight for support. It’s a heart-breaking story. Please share it as widely as you can to raise awareness of PDA.

Read more

Helping your special needs child – a mother’s story

A mum called Tanya contacted me the  other day and asked to share her story about her journey to support her disabled son with everyone, which I am only too delighted to do. 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.

Read more

Empowering parents is the goal for Pat

Pat Bolton is a parent of a young person with special needs who works with a small  team of Participation Practitioners at Parents In Power, Gateshead,  www.parentsinpower.btck.co.uk  Pat helps parents to get the support their children need.

Read More

Resilient Parenting – A Guest post by Lesley McCall, NLP & Hypnotherapy Practitioner

Lesley McCall is an NLP practitioner and Hypnotherapist and has a child with SEN. She is experienced in helping people with parenting issues and with children who have special needs. She has some advice on how you can stay strong as you raise your children.

Read more

It’s Dyspraxia Awareness Week – be alert for early signs

The Dyspraxia Foundation is calling on families to be alert to the early signs of the condition in their awareness week campaign from 14th – 20th October 2012.

Chair of the Foundation Michele Lee said: “Many parents are unaware of the early signs of dyspraxia. It is vital families are on the lookout so we can ensure their children benefit from help and advice as soon as possible. All the research shows the earlier children are helped, the better their chances are for achieving their potential in the future. Early identification means that children can be referred for the help of specialists such as occupational therapy or physiotherapy whose input can be invaluable.”

“This year we have worked with CBeebies to develop a new early years programme, Tree Fu Tom, which encourages the development of foundation movement skills in all children, but especially those with dyspraxia. We are delighted that the series reached over 300,000 children aged 4-6 years in the first series and that parents are reporting improvements in their children’s motor skills and confidence”.

Dawn, mum of Rowan aged 5 years says “My son was diagnosed with dyspraxia by a consultant paediatrician last year. Rowan loves watching Tree Fu Tom with his younger sister and they both join in with the spells. Rowan tries really hard to master the movement sequences and takes this very seriously. He says that Tree Fu Tom is just like him!

With practice Rowan has got better at the spells and he doesn’t fall over as much. He’s also getting better at staying in one spot rather than migrating around the room, and he has started to be more aware of where his sister is when they are doing Big World Magic together

Early signs of dyspraxia can include:

  • Being late to achieve motor milestones such as sitting and walking
  • Some children avoid crawling or bottom shuffle instead
  • Frequently falling
  • Difficulty manipulating toys and other objects
  • Being a messy eater
  • Having speech/language problems
  • Slow to respond to instructions
  • Sensitivity to noise, touch and other sensory information

Dawn’s advice to other parents is “Be persistent. We felt that something wasn’t right for Rowan. He never jumped and couldn’t manage buttons or hold a pencil, but because he is a bright boy he compensated for his difficulties so they weren’t noticed by his nursery teachers. Fortunately our GP listened to our concerns and referred Rowan to the paediatrician for an assessment”.

Dawn also says: “It can be really hard to get help for young children with dyspraxia and it’s so frustrating trying to get your child to do things that they find difficult. We are so lucky to have Tree Fu Tom which is something fun that we can do with Rowan that we know will make a difference. There are lots of wonderful things that Rowan can do and it’s important to focus on them and not what other children are doing.”

If parents of pre-school children are concerned about their child’s development they should speak to their GP or Health Visitor. Further information about dyspraxia can be downloaded from www.dyspraxiafoundation.org.uk. All the advice and guidance produced by the Dyspraxia Foundation is written in consultation with people affected by dyspraxia and checked by professionals.

As part of Dyspraxia Awareness week a survey is being launched to gather information from parents about their early experiences of trying to get their child’s difficulties recognised. The survey findings will help to develop targeted resources to enable parents and early years professionals to recognise the early signs of dyspraxia and to provide the help and support these children need. A link to the survey will be available on the Dyspraxia Foundation website during Dyspraxia Awareness Week www.dyspraxiafoundation.org.uk

The Dyspraxia Foundation is also holding a two-day conference for parents and professionals in Bournemouth on 9/10th November 2012 with renowned speakers Dr. Madeleine Portwood, Barbara Hunter and Gill Dixon. Further information about the conference and a booking form is available from admin@dyspraxiafoundation.org.uk

Active listening: a core skill for SEN reform

Yesterday, MumsNet hosted a live web chat with Sarah Teather, Minister of State for Children and Families.

I recently posted an open letter to Miss Teather, to which I’m still awaiting a response. Last week I spoke at a Surrey pathfinder event on behalf of Family Voice Surrey and in front of DfE senior official, Stephen Kingdom. I made sure to mention our concerns about the timetable for reform that everyone, outside the government, is very worried about. I spoke to Mr Kingdom, a very personable chap, afterwards, to ask him to pass on these concerns to Miss Teather. A day later, he emailed me to tell me about the MumsNet webchat and I was delighted to publicise it on my various social nets (and thanks to everyone who retweeted!) so that as many people as possible could get their questions in. Including, of course, me!

Here is my question:

Hi. My name is Tania Tirraoro and I am co-chair of Family Voice Surrey parent-carer forum. On behalf of FVS, I sit on both the Surrey Local Change Board and the EHCP workstream, part of the SE pathfinder. I have two statemented teenage sons with ASD and I am also the founder of the website, Special Needs Jungle.
I can see how hard parents and professionals alike are working on this reform and how much many LA staff want to do things differently. There are many challenges and details to be worked out and worked through. Our EHCP trial isn’t even set to start until September, and we are far from alone.
I would like to ask: What is your objection to listening to (as opposed to hearing) all those expert voices who are telling you that any draft bill should be delayed until the New Year?A delay of a few months won’t stop this process (described by someone in your department as an ‘unstoppable train’, rather worryingly), but it will give those involved time to work through the pilots, making adjustments as they go without feeling the unnecessary pressure of looming legislation.
The genie is out of the bottle – reform will happen, but you’ll be remembered much more favourably if you give them time to do their work without the extra pressure that fitting into an artificial timetable will bring and you will end up with a stronger, more sustainable system that will really work for children with SEN & disabilities and their families.
Stephen Kingdom, your DfE colleague, told me last week the process will evolve and it won’t be a final bill – if that’s so, why bother publishing it until you actually have solid results to use?
Thank you for your time.

Despite being in bed recovering from surgery, on Monday I logged on via my iPad to read all the many questions posted – and there were lots of questions from concerned parents about various aspects of SEN provision.

It has been clear to me for some time that anyone outside the actual pathfinders doesn’t really know what stage they’re at, or what they’re even about. If you’d like to know more, I would thoroughly recommend this article in SEN Magazine from Jane McConnell, CEO of IPSEA who has a good grasp of the issues and spoke at the recent Education Select Committee on SEN.

Even though it wasn’t the first to be posted, my question was the first Miss Teather chose to answer, not that there is anything to read into that. See below.

SarahTeatherMP Mon 16-Jul-12 10:37:55

Tania Tirraoro asked a question which was picked up by a few of you:
I would like to ask: What is your objection to listening to (as opposed to hearing) all those expert voices who are telling you that any draft bill should be delayed until the New Year?

The most important thing I should stress is that what we will be publishing in September is just a draft bill – it is for discussion, not for debate in Parliament. We won’t be publishing the real bill until the Spring next year. The draft bill is an opportunity for parents and charities who are expert in this area to look at our ideas and tell us what they think. The education select committee in Parliament will also run a kind of inquiry on the draft proposals. It is one of the many stages we are using to test out people’s views and make sure we have the detail right.
It is also important to remember that this is the half way point in the reform process. We began in September 2010, asking people’s views on about what should change, then we published a green paper in the spring last year, more detailed proposals a few months ago, the draft bill in September and the real bill next year. We will also have lots of time in Parliament to debate the bill. It isn’t being rushed through. It will run over two Parliamentary sessions. And some of the legislation will need to be done in what is called secondary legislation at a later stage.
Throughout this process the pathfinders will be testing things out and we wil be getting formal reports. The pathfinders of course are not just testing out the proposals for the legislation. much more importantly, they are about changing culture. You can’t legislate to make people listen – you need to get better at it.

Sarah

I didn’t post a follow up, she only had an hour and there were a lot of questions to get through. The answer was interesting and informative but it still doesn’t answer the question posed further down in my posting – why publish a draft bill if the process is nowhere near ready for it and there is still feedback to be sought from parents and charities? This would seem to be a waste of time and money.

It is this draft bill that is putting unneccesary pressure on the professionals involved in the pathfinders who are trying to do their best – it is unfair and unrealistic. At this stage, in Surrey, we are only about to start talking about who a key worker should be and what qualities they need. But key workers need to be appointed before a trial can begin. Likewise a plan writer. This work WILL be done, but why place what amounts to a false deadline to loom over their heads?

Speaking as the parent of children with special needs (and I’m pretty certain that my views are echoed by most other parents and professionals), give them time to get it right! Why not say, okay, we will have a draft bill, but to instil confidence in the government’s intentions to get it right, we will listen to these concerns and make a much more informed draft bill in January. Would that be so difficult? Really? We wouldn’t think badly of you, we would all breathe a sigh of relief that the job could be done without a guillotine hanging over the heads of those doing the work.

The perception that without this October draft bill nothing will happen is utterly wrong. All it’s doing is causing anxiety and the impression that the government is steaming ahead without regard for the reality of the situation.

One very interesting point Miss Teather mentioned – and it’s something that is at the very heart of the reform – is culture change. This also is going to take money and time. People may lose their jobs over it if they can’t adjust to a new way of thinking. The idea of children and families as ‘client groups’ as I heard one person call them, must come to an end. Children are not clients, they are the vulnerable young people that this process is all about. You can’t change culture by a wave of the wand – extensive training needs to happen.

On top of this is the massive shake-up  in school funding that is happening all at the same time and it is causing much anxiety, frustration and confusion. Mr Gove seems to forget that with all his ‘fantastic’ ideas, he is creating uncertainty in already uncertain times and this cannot be good for schools, teachers or ultimately, children.

So, thank you Miss Teather, for taking part in the web chat yesterday. I’m not really sure if anything you said made anyone actually feel better, but it was a nice gesture. I know you’re busy, but you need to do more getting out and about like this. You see, parents of children with special needs are a cynical bunch and for good reason. Actions speak louder than words to us.

Can you really understand what we’ve been through and are still going through? I don’t really think so, but delaying any draft bill to the new year would be a good indication that you are listening to those of us who are in a position to speak on behalf of our fellow parents who are too stressed and overwhelmed with their situation to have time to speak up for themselves.

 

When the words move by themselves – it could be Visual Stress

I met a lady on Twitter a while back, Michelle Doyle, who was talking about ‘Visual Stress’. I wasn’t really clear about what this was so Michelle has kindly written about it for Special Needs Jungle about how it affects her son and her fight to get him the support he needs. Here’s her story:

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After years with my son struggling with his reading and writing and being given the impression that he was lazy in class, in Nov 2009 at the age of eleven, he was given a coloured overlay by a teacher at his Primary School.

After I questioned him about this, I was shocked and extremely surprised to find out that when he looked at a page of writing it moved around the page. My son has Visual Stress, the movement of letters on a page of writing and there is a fairly long list of symptons that are associated with it.

I spoke to his Optician who confirmed that my son has Visual Stress, Visual Stress – Meares Irlene Syndrome, Scotopic Sensitivity Syndrome, or Visual Dyslexia the different names I have heard it called. He has to have two pairs of glasses one for everyday use, i.e. going out  and a coloured pair for his educational needs.  He also has severe long-sightedness.

Precision-tinted Lenses are only available by private prescription and the cost can vary from area to area by quite a considerable amount.

I got in touch with the local Primary Care Trust and after about 6 months I finally managed to get a second voucher issued for his distance vision to be put into his tinted lenses. This is also now done for all the children in my area who suffer from Visual Stress.

I have also been in touch with my MP.   She wrote to the Secretary of State for Health and the Chief Executive for NHS in my area.  The replies basically told me what I already knew about the vouchers for children etc. I do not feel that the question of extra funding for the vision of these children was answered at all.   Basically I felt as though i was being swept under the carpet.  [Currently vouchers will not cover the cost of tinted lenses – only the prescription lense]

My MP wrote to the Group Director for Social Care and Learning. His reply gave me the impression that he didn’t have a clue what I was talking about. I then sent an e-mail direct to the Group Director of Social Care and Learning, begging of him to do his homework and find out more about this condition. I sent him two examples of Visual Stress so he could see for himself the reason’s behind these children struggling so much with reading and writing.   Once again I received a reply stating what I already knew, with no offer of looking into this more.

I also got in touch with the Education Dept. for Disabled Children.  They then referred me to The Visual Impairment Coordinator for my area. She told me herself that what my son had wrong with his eyes is not dyslexia. She described it as Scotopic Sensitivity Syndrome or Visual Stress. Even she had to research Visual Stress before she got back to me.   She told me not to force my son to read as the stress he feels, makes the stress on his eyes worse and therefore the Visual Stress symptoms get worse.

When my son first started year 7 he had a reading age of 7.2 years even thought he was 11 years of age. Now at 13 years and year 8 he has the reading age of 9.5 years. [this is an amazing achievement!] I was told by my son’s school that the Education Authority in my area would not issue my son with a Statement of Educational Needs.   So I went directly to the Head of SenCo in my area.  I told them that he needed and I wanted him to have a Statement of Educational Needs.  He was assessed and It took approximately three months for him to be issued with a Statement.

The school were very surprised that I had managed to get a Statement for him.

I was told that my son also had dyslexic tendencies I asked the school about getting him assessed; they told me that my Education Authority didn’t recognise Dyslexia as a learning disability. I told them that I wanted him assessed. Strange that if my son goes to College or University all of his sight problems will then be recognised.

In the mean time I have started a group on Facebook called Parents of Kids with Visual Stress.   This is where all our members can discuss the problems that they are having and also get ideas of how to tackle things from other people. We are also there to support each other with our fight.

I also have an e-petition running for the funding of tinted lenses for visual stress.   I need to get 100,000 signatures for it to be discussed in Parliament. The more votes that we can get the quicker the help can be put in place to help our children.

So far it has felt as though I am being pushed around an ever increasing system of managers etc.  Yet not one of these people are able to tell me if my son can get any help towards funding the glasses he so obviously needs. Without these tinted lenses my son will never be able to read and write at the same level as his peers.

Don’t rush SEN reform – get it right, not fast

I’ve just watched the Education Select Committee on SEN – the Next Steps and many of the concerns raised mirror the points I raised in my presentation at the Towards a Positive Future Conference.

Sarah Teather, in her part of the committee, said there will be a ‘slight delay’ in bringing the draft bill until the autumn. This will be followed by a ‘carry-over’ bill in Spring 2013.

But most of the trials are not planned to get started in earnest UNTIL the autumn. So I think the government is still jumping the gun. And I’m not the only one. The experts (yes, Ms Teather, experts) all share my view that legislation should be delayed. You can find the recording of the today Select Committee here. Having listened to Ms Teather, she seems to think the pathfinder trials are a lot further along than they are –  certainly in the SE7 group, to which Surrey belongs.

I’m including a portion of my talk below where I cover both where we’re up to in Surrey with the EHCP and why I think the apparent rush to legislation is foolhardy.

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The SEN Green paper of course, is still being developed. In fact we are only now edging closer to what an EHCP might look like. Who will be writing a child’s EHCP or supporting the parents through it – a so-called key worker –  has still to be decided.

This process is one that is supposed to be informed not just by the professionals and the politicians, but also by the voice of the parents. Parents are part of every pathfinder and every workstream from EHCP to complex needs to early intervention, looked after children and so on..

This is where the parent-carer forums come in. Our Surrey Forum,  Family Voice Surrey, is still quite new. We work with other parents on the committee to represent a strong voice for parents of SEN and disabled children. For the Surrey pathfinder, we are there, putting the parents’ voice forward, as other parent-carers forums do in the other pathfinder areas. We also sit on the high-level Local Change Board, giving us a voice at the very heart of the local authority’s decision-making process for SEN.

Surrey is part of what is called the South East 7,  SE7 group of pathfinder authorities that includes Kent, Medway, East Sussex, West Sussex, Brighton & Hove &  Hampshire

The pathfinders will all test some core elements of reform, including:

  • The single education, health and care plan from birth to 25 years old, focusing on whether outcomes for disabled children and their parents have been improved
  • personal budgets for parents so they can choose which services best suit the needs of their children  although no one will be forced to take control of their own budgets if they feel they can’t or don’t want to.
  • improved commissioning, particularly through links to health reforms – though it has to be said health are, in many areas, reluctant party-goers.
  • and how voluntary and community sector organisations will need to be involved in making the new system work
  • it will also look at the cost of the reform.

Crucially, the new process is also supposed to go from birth up to 25 years old. This is a huge change from the current system where parents of disabled 19 year olds face considerable difficulty in accessing appropriate support or education for them. It’s also anticipated, as I mentioned, that a key worker will support the parents through the process.

Another aspect being worked through is the ‘local offer’ which each LEA will need to draw up to set out to parents whose children do NOT have an EHCP what provision is available for them within the county to support their children’s needs.

It’s aimed at giving parents more information about the services and expertise available locally, for health, education and social care, and increasing their choice. At the moment, we don’t actually know in Surrey what will be in the local offer, it’s still at the development stages.

The principles are for it to be holistic, accessible and easy to understand for parents as well as transparent, sustained and sustainable  –  ie, continually updated – as well as realistic.

As a parent involved in the pathfinder, it can be difficult. After all, you are not experts in every single field. You are, by definition,  informed mainly by the experiences of your family, and other families that you know. This can be a strength and a weakness:  the parent needs to be able to extract from their experience, what is useful to the process and not get bogged down by past injustices in dealings with the LA or present worries about their own child.

You’re there, after all, to represent all parents, carers and most importantly, the often unheard voice of our children. And let’s not forget, some children aren’t lucky enough to have parents and are ‘Looked After’ by the local authority – someone needs to speak for them, too.

The Regional Framework for Parent-Carer Participation says that Parents and Carers are central to, and key partners in, the SE7 Pathfinder activity, which is a learning process for all parties. Sometimes this is hard to believe. Comments I have heard include  “Some parents just want to get a statement to get their child into a good school.” This from the (now former) head of SEN. Or, from another professional, “Some children have too much provision in their statement.” Not to mention that even now, parents still say that their LA case worker seems to feel the money for provision is coming out of their own pocket.

I think one of the most important things that needs to happen and right now, is a cultural change in attitudes to one where parents and LEA are not seen as being on opposite sides. This, I think, may be the most difficult part of the whole process but it is crucial.  There are too many examples to count where parents have been forced to the brink of despair, have just given up or had to remortgage their homes in order to secure the right educational solution for their child.

If the new process doesn’t come with a shift in the entrenched local authority belief that parents are trying to get ‘more than they’re entitled to’ or to ‘game the system’, then any number of new laws will not bring about real change. Let’s not forget  parents don’t go into this process for a laugh. It’s gruelling, it’s exhausting and it’s distressing. Often parents turned down at the first application just give up  and they are often the parents who are most in need of support but who have no knowledge of how to get it, because they find all the information leaflets sent out just too confusing.

So, you’re probably wondering how this new system will work  and key to this is the new Educational Health and Care plan. What will an EHCP look like? For a start, lots of outside commentators seem to be mistaking a single plan for a single assessment. The different assessments will depend on the needs of the child but the idea is to have a single plan that encompasses all the child’s needs from educational, health and social care.

Because it’s such a broad ask, actually designing what the finished Statutory plan should look like is taking some time. In Surrey we have just prepared a second draft of our own, which is shaping into a workable document through lots of feedback from professionals and, I’m delighted to say, our parental contribution has informed its development a great deal.

The plan involves multiple entry and exit points and the plan will be updated as the child develops. This is fine in theory, but many parents will be worried that this contrant review process will end up with their child losing provision and if it’s updated every year regardless, it’s going to cost a lot of money.

The idea is that once an initial problem with a child is raised – at whatever age it is found- then a Multi-Agency meeting is planned with all the relevant services. The main idea is that the parent should only have to tell the child’s story once. I’m not sure, in practice, how practical this will be.

The parent will be able to choose a key worker to support them through the process. After the meeting, it will then be decided whether any action needs to be taken at this point, or if an assessment is required. It’s intended that at any decision point, an appeal can be heard although they do intend to include more of a mediation process. Again, how this will work has not been finalised.

You can see that even at the early stages of drafting, there is no intention just to have one assessment  it just wouldn’t be possible if a child has multiple and complex needs.  After this, it will be decided whether the child’s needs can be met within the local offer or whether an EHCP should be drawn up.  At the forefront of the EHCP is a focus on ‘outcomes’ which will, of course change as the child progresses through this endless cycles of reviews during their education and on until they are 25, if necessary. And at the heart of the process is the child.

On the face of it  a good, holistic idea, but the devil, as we are all finding out, is in the detail. For example, there is the question of who will be writing the final plan. At present, the statement is written by a statement writer whose usual background is a case worker with a few years experience. They like to, so I’m told, sit in isolation in a darkened room writing up a document that will affect the rest of a child’s education. This explains perhaps why most of them are pretty inadequate.

As the idea is to involve the parent and/or keyworker at all stages, this will certainly have to change. The person writing the plan will, in collaboration with the parents & key worker, have to sift through the results of the assessments to find the key needs that need to be provided for. So to me, as a parent, the major people in this whole process, aside from the child, will be the Key worker and the plan writer.

To me, and this is only my opinion, the key worker should be an independent advocate for the child: that is, independent of the LA or the parent, but who also has regard to the parents’ support needs. If this is the case, then negotiation can be made at the plan writing stage to come to an agreed plan so that the need for appeal is minimised- because nothing is finalised until all parties have agreed and all parties are fully involved.

At the moment, a statement writer is supposed to distil the evidence into a statement to fit in with what might be available from the LA. And so when a parent wants an independent special school, further negotiations or an appeal has to take place. And that appeal is usually for parts 2, 3 and 4.

On top of this, I think parents should be encouraged to think about placement at a much earlier stage. Some already do, but other, perhaps less socially mobile parents are left with a statement that the local school can’t possibly hope to meet.

This is where the key worker is a bonus  as a person who, presumably, does this for a living, they will be familiar with the range of provision both in and out of county and will be able to present a shortlist of schools for the parents that is suitable for the child  who, after all is who this whole process is about.

So the plan writer needs some pretty sterling qualities: – someone with a keen analytical mind; compassion; knowledge of education; health and care services, who is also able to work collaboratively. Wow! What a person!

And the Key Worker: This needs to be a person of infinite patience who also has knowledge of education, health and care providers, compassion, independence and an ability to withstand the pressure of the LA and its focus on budgets and the pressure of the parents who may or may not be able to clearly see what is suitable for their child. They also need an awareness of what is available to support parents (they may need a magnifying glass for that!)

This is a vital issue:  parental stress through the needs of a disabled child, can lead to family breakdown, which is counter-productive to the future of the child.  It can also lead to illness of the parent who is then unable to care for the child.

So, I strongly believe that it is impossible to be able to carry out satisfactory pathfinder trials until people of this calibre are identified and recruited, because these are people vital to the process. This does not fit with the government’s stated timetable and it would be a shame to have to cave in to pressure from the government when there is a huge opportunity to reform the SEN system for future generations.

Unfortunately, the coalition government sees the reform process as an unstoppable train that they are pushing through with, on their on timetable, with no regard for the realities of what is happening on the ground.

It’s little short of crazy and they have been told their timetable is unrealistic but, by all accounts, they are NOT listening and so everyone is under extreme pressure to push through a process at break-neck speed that will be in danger of being just as ‘not fit for purpose’ as the one it aims to replace. I think that the government should not rush to legislation. As I have outlined, the trials are yet to begin in earnest  and at this stage in the year with the summer holidays around the corner, look set to be delayed even further.

And yet the government says it aims to use the results of the pathfinders to inform its draft bill this Summer. I’m not sure where they’re planning to get these results from and, with the exception of West Sussex, few families have been registered for the pilots. Surrey for example have ‘identified’ a number of parents for various aspects of the trials, but none have been registered yet for the EHCP, which is the crux of the whole reform. And we are far from alone.

If the government are serious about making a change that will truly benefit children with SEN and disabilities, surely it is better to get it right, than to get it done quickly.

A government spokesman is reported in The Guardian to have said they do not expect to get Royal Assent before 2014 so why the rush this summer? A lot of money is being spent on the pathfinders  even down to catering for all day sessions, hiring meeting rooms, paying attendance and travel expenses.

It is only right that spending, what is taxpayer money, should be rewarded with a system that is sound, reliable, works for families and provides appropriate, lasting educational and social solutions to children with special needs and disabilities.

Home educating a child with special needs

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Common sense solutions to solving dyslexia issues

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/

The lifetime legacy of special needs left by meningitis

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:

  • Significant deficits across all aspects of memory
  • Poorer executive function – leading to problems with planning and organising
  • 4 times more likely to have mental health issues
  • 5 times more likely to have speech and communication problems

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::

  • There may be delayed deficits – injury may have been to a part of the brain responsible for skills not required until later in life e.g. a child may appear to be doing well in Primary School, but on transition to Secondary, issues appear as they have problems with their executive function responsible for planning and organising
  • There are often significant discrepancies in ability levels e.g. excellent vocabulary knowledge but lack of organisational skills to formulate expressive language
  • Things that change frequently – they can seem to be learning rapidly at times, other times slow or plateau effect. And they can “grow out” of problems as they recover or compensate for impaired ones
  • They may score OK on conventional tests of intelligence as they have retained previous learning (meaning they are at age-equivalent level), but they gradually fall behind as new learning is impaired

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:

  • As it is often an evolving issue, it does not fit standard SEN systems
  • It is usually complex (i.e. many different facets to it), frequently leading to some individual components being identified but in isolation
  • The cause of the issues may have been years before (e.g. meningitis as a baby) so it is not connected and therefore the root cause not considered (ABI)
  • Generally, teacher training in special educational needs is poor and does not include training on ABI and its impact
  • And the people responsible for assessing children, the Educational Psychologists, have very little understanding and expertise in ABI – and yet they are advising schools.

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:

  • “None of the professionals who came to the meeting about my son had any knowledge of meningitis or the after-effects. I felt like he was just set up to fail. They say education is inclusive ….. not for children who have had meningitis”
  • “Throughout my son’s school life, he was forced to fail before he could get any help and his self-confidence was left in tatters – if it had been an obvious physical disability he may have got the help he needed”.

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

Real tips from real carers – a new tool from NetBuddy and NHS Carers Direct

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.
“The tool that Netbuddy and Carers Direct has created is a really simple interactive gizmo that could help share dozens of these great tips with a wider audience of carers. We hope that these tips will make real changes the lives of carers – and the lives of those they support.”
You can find top tips for helping children with SEN and disabilities at the NetBuddy website. You can also offer your own tips as well!

Shortlisted for BritMums award – Why SNJ is all about CHANGE

Thrilling news – The Special Needs Jungle blog as been shortlisted in the BritMums Brilliance in Blogging Awards “Change” Category

The Special Needs Jungle blog is all about change – changing the SEN system for the better and bringing information and resources to the attention of those who can use it to change their families’ lives for the better. It’s about amplifying the voices of families and professionals involved or coping with special needs issues – there are so many out there, but they far too often go unheard or unheeded. I am passionate about using this public forum to spotlight their views.

Special Needs Jungle has changed my life too, in ways I never imagined.

Me with Sons1 & 2. Image by Angela Melling

I started Special Needs Jungle back in 2008 when my younger son was going through the statementing process. I had amassed all this knowledge about the process and decided to write it down in a form that could help others, so I tentatively started the Special Needs Jungle blog. A year later, when I came to apply for my older son’s statement (they both have Asperger’s), I used my own site to refresh my memory of what to do!

One morning last September, I sat up in bed and knew that I had to write a book explaining in greater detail to parents facing the stressful and exhausting statementing process, just how to sit down and start setting out their child’s story. The book, Special Educational Needs – Getting Started With Statements,  took five weeks to complete, including examples from real, successful applications as well as contributions from other parents with their own stories. It has been very well received, the Kindle version of it hitting the top spot in the special needs category several times.

Last week, I spoke at a special needs parents’ coffee morning in Guildford and took ten books along with me, thinking I might sell a couple if I was lucky. Within minutes, they were all snapped up! There are more speaking engagements coming up, including at the ‘Towards a Positive Future’ conference in June. I’m on just before NAS President, Jane Asher, which everyone says is better than being on after her, as she’d be impossible to follow!

Through SNJ, I have been able to highlight SEN issues, great practice, fab resources and the most amazing, dedicated people who are working to help children and young people facing sometimes extreme challenges. I do not make money from or have sponsored posts on the blog – every guest post is given and accepted free of charge or payment and I only feature posts that bring something useful or inspirational to families caring for special needs children. It is a privilege to do so.

I haven’t mentioned this before, but a percentage of anything I make from book sales will be donated to my boys’ independent special school, More House School, who are trying to raise a million pounds to fund a School of Engineering, so that its boys can leave with real skills that will benefit themselves and the UK economy. My donation won’t be much – as authors know, not many make a million, especially from such a niche book, but it will be a small contribution to say thank you for everything they do for my sons. If you have any links with engineering companies who might like to sponsor such a worthwhile project, do let me know.

I’ve also, this year,  joined the committee of Family Voice Surrey, a parent-carer forum involved with the development of the new SEN Green Paper to make sure that the proposed changes really do make life better for families with SEN and disabilities. We are one of many such forums across the country, all of whom donate their time to help others.

And there are rewards: next month, as a result of the skills I have learned from working online and in social media, I will start work as PR and Community Manager for EDRIC, a European NGO aimed at helping people with Dysmelia – congenital limb reduction – across the whole of Europe. It’s a challenge I’m really excited about and it will also bring a wider context to Special Needs Jungle.

If you get time, and if you think Special Needs Jungle is a worthy recipient of the BritMums Brilliance in Blogging Change Award, please click this link and vote for me. 

Special needs experts offer views for Labour’s SEN policy review

Earlier this week, I attended a meeting at Westminster for Labour’s SEN policy review, chaired by MP, Sharon Hodgson, Labour’s Shadow Minister for Children and Families.

Westminster - Copyright Tania Tirraoro all rights reservedMrs Hodgson is herself the mother of a severely dyslexic son so if anyone understands SEN issues, she does. The issue under discussion in this one of a series of meetings, was early identification and provision. Now, Labour’s record on SEN isn’t stellar, presiding as it did over the closure of so many special schools and the policy of inclusion, which anyone with a real understanding of the needs of children with SEN and disabilities could see just wasn’t sensible.

However, now they are out of power they have an opportunity to reassess and this review is seeking to bring together young people with SEN and disabilities and their families and associated professionals to examine the current SEN landscape. The review is also attempting to crystallise opinions on the government’s SEN Green Paper and 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.”

Trialling by pathfinder councils of aspects of the Green paper is getting underway, although in Surrey at the moment, it seems there is much up in the air with an abrupt reorganisation of the SEN department and the departure of several senior key figures, including the head of SEN herself, Debbie Johnson. One might ask, who is actually running Surrey’s SEN at the moment and how will this apparently major reconfiguration affect the pathfinder?

At the Westminster meeting, around fifty people concerned with SEN were gathered in Committee Room 14, from the head of the NUT, Christine Blower, the CEO of The Meningitis Trust, Sue Davie, councillors, day nursery providers, the leader of the Association of Educational Psychologists, Kate Fallon, other SEN professionals and parents, like me.

All who spoke, did so with great passion and knowledge about the difficulties faced in providing adequate care and appropriate education for SEN and disabled children. This was focused on the problems surrounding  the timely identification of children whose SEN might not be immediately apparent, in some cases until they reach Secondary level, such as children with acquired brain injury.

Karen Veitch of the National Day Nurseries Association, said how early intervention may be expensive at first but it was far cheaper in the long run, while Kate Fallon said that the current system tends to mitigate against early intervention.

One inspirational mother and daughter team are Nadia Clark and her mother, Katie. Nadia has cerebral palsy and is deaf. She uses a vocal synthesiser to speak, but her indefatigable spirit and intelligence shines through and she soon hopes to go to University. She is the recipient of a Winston Churchill Foundation grant to research alternative methods of communication.

Her mother, Katie, is a woman of great determination and she has worked tirelessly to support her daughter. She spent two years looking for a school that would take Nadia, moving her family across the country to do so. She later formed the parent-carer forum, One Voice Communicating Together and believes the future for SEN & disability services should be about “looking at things differently and more creatively”. She stressed, and I thoroughly agree with this, the need for good emotional support for families in the early years, saying supporting parents’ self-esteem is vital if they are to be able to be strong for their children.

The NUT’s Christine Blower voiced concern over the break up of the schools system and said there was massive pressure on SENCos to work beyond their skill sets. In my own experience, SENCos are also overworked, carrying out several other roles within the school as well.

It will be interesting to see what comes out of the review and I will look forward to reading any published policy that comes about because of it. It was a privilege for me to listen to such committed and dedicated parents and professionals speak so eloquently about services for vulnerable children. I just hope that they are listened to by those who can make a difference at government level.

Unofficial exclusions – Has it happened to your child?

Some schools in England are illegally excluding pupils, sometimes permanently, without going through the full formal process, a report says. England’s children’s commissioner Dr Maggie Atkinson heard some pupils were moved to other schools or sent home without an exclusion being recorded. Most schools tried to hold on to troubled pupils, she said, but a minority excluded on “a whim”. BBC News

This story has made the news today but for me, it comes as no surprise. In fact, I published a post about this very subject a few months ago regarding unofficial exclusions because of a child’s special educational needs:

Yesterday, I was talking to a friend of mine who is a highly experienced SEN Advocate. I told her of a parent I know who had been asked to collect her ASD son early from school each day. My friend, Julie Maynard, was outraged. That was, she said, an unofficial exclusion and was illegal. The child was being deprived of a full school day because of his disability….Read more

That story followed the Centre for Social Justice  releasing a report last October that said some schools in England are “acting illegally or unscrupulously” by excluding pupils by unofficial means. Some schools encourage parents to remove difficult children, avoiding officially excluding them but providing no support. The report, No Excuses: A review of educational exclusion, was based on interviews with more than 100 heads, teachers, parents, pupils, local authority, voluntary and private sector workers.

Today, Mark Atkinson, Director of Policy, at Ambitious about Autism said, “The Children’s Commissioner for England is right to highlight the scandal of illegal exclusions from school. Children with autism are unfairly and disproportionately over-represented in exclusion figures. The fact that pupils with special educational needs (SEN) are eight times more likely to be permanently excluded from school is shocking and must be addressed.

“We call on head teachers to think twice before excluding a child with SEN, and we call on governors to hold their senior staff to account.”

If your child has been unofficially excluded, read my earlier post to the endas there is a form letter protesting this that you may want to use.

Got the statement? Great, but your work’s not over yet.

Many parents are so relieved to get that letter saying the LEA has decided to issue a statement of special educational needs for their child that they think their work is done. And they’d be very, very wrong. A statement is useless if it does not define your child’s needs completely and set out in detail how they will be met.

When you receive your draft statement, you or your advocate, must ensure that all your child’s special educational needs have been properly identified and stated in part two of the draft statement. Then, you must ensure that every stated need should be met with appropriate provision in Part three.

Each special educational need specified in Part 2 must be met by provision specified in Part 3: R –v- Secretary of State for Education ex parte E [1992] 1 FLR 377, CA

If your child’s needs have been inadequately stated in part two, now is the time in your response (which normally needs to be within 15 days) to make sure you add them so that they can be included ans provision provided.

This process is not made easier by the way the statement is set out. Instead of listing Need, then Provision next to it, all the needs are set out then all the provision, so it is up to you to match one against the other. I would recommend using a table to do this – one column headed Needs- Part 2, the next, Provision, Part 3 and a third column entitled,  My Comments.

Then go through part two and pick out each separate need and list it in a separate row under the first column. Then go back down your list and search through part three of the proposed statement document for a matching provision. The statement document has evolved to be quite narrative in format, often just pasting in chunks from the Ed Psych report (in our case from the Ed Psych report that we had paid for ourselves) This does not necessarily mean that the statement writer has understood your child’s needs, just that they know how to copy and paste.

Part 2 can include narrative description of a child as well as specifying SEN (cf R –v- Secretary of State for Education ex p E [1992] 1 FLR 377): W –v- Leeds CC [2005] EWCA Civ 988, [2005] ELR 617, 29/7/2005

So your final table should have all your child’s needs in column one that have been stated and with your own additions if needed (make sure it is easy to understand you have added these yourself)

In the second column, which reflects Part 3 provision, you should have listed everything you can find that matches with the needs. This may well be eye opening.

Then in the third column make your notes and observations about the provision.

Then go back through Part 2 and Three and make sure you have covered everything. You may well find that there are unstated needs or needs that have been stated that there is no provision for. Of course, you may see that your statement writer has done a sterling job and everything is as it should be.

If you have non-educational needs and provision listed in part five or six, ensure this is also adequate. Sometimes speech and language is listed as non-educational. If your child needs this help for living (eg eating) then is is non-educational. If they need OT or SLT for learning – ie, writing help for dyspraxia, communication skills, then is should be in parts two and three as educational provision.

You can ask for a meeting during this time with the LEA and after the meeting you have another 15 days to ask for further meetings. Within 15 days of your last meeting, you can send in any more comments. If you would like more time to comment, you should talk to your case officer.

There should be no school named in part four at the point of issuing a draft statement. But be aware that the LEA is not obligated to name a school that can provide ‘the best’ education, just one that provides an ‘adequate’ education that meets your child’s needs.

The LEA/SENDIST is under a duty to secure provision which meets the child’s SEN but is not “under an obligation to provide a child with the best possible education. There is no duty
on the authority to provide such a Utopian system, or to educate him or her to his or her maximum potential. …”: R v Surrey CC ex p H (1984) 83 LGR 219.

It’s a very good idea to research suitable schools before you even know if you’re getting a statement so you know what type of school can meet your child’s needs. Often you will know exactly which school you want them to go to – and that’s the next step!

SEN-Getting Started With Statements

This advice and more is detailed in my SEN statementing book, Special Educational Needs, Getting Started with Statementing. It’s available in paperback or ebook from Amazon & WH Smith online or paperback from Waterstones.com. Or you can order it from your local bookstore. So many SEN books are expensive so I have priced this at just £6.99 to make it accessible to as many parents as possible.

Legal Quotes Source: ISC

If your SEN child loves computers.. watch this video

Source: Wiki

I’ve talked a lot on this site about the need to improve IT teaching in schools, before Michael Gove announced an intention to do just that.

One great way to do this is for schools to buy the new Raspberry Pi – a credit-card basic computer that runs Linux that children can learn to code with. It costs under £25. My boys’ school, I’m very pleased to say, has already ordered two of the machines and yesterday I had an opportunity to pre-order one for Son2. There’s a long lead time because demand is so high, so I’m not expecting to see it before May.

Many children, especially boys, who find great challenges with learning skills such as handwriting and accessing the curriculum the way others do, are actually terrific with computers. This is a brilliant way to encourage them into a career where they can excel.

But if you’re not especially techy yourself, how do you do this? I’ve found this great video on the Guardian’s website where Web developer Chris Cross looks at how easy it is to set up, browse the web and write code. Watch this and you’ll feel a lot more confident about how to encourage your child. For books on basic programming for kids, I found this one with five star reviews on Amazon called Hello World! Computer Programming for Kids

Vodpod videos no longer available.

Government Urged To Ensure SEN Appeal System Is Made Less Intimidating

Many families experience an intimidating process when they appeal against local authority decisions regarding special educational needs provision for vulnerable children, says speech and language therapist Janet O’Keefe, who attends many tribunals as an expert witness.

Janet says that special educational needs and disability tribunals are organised by the Ministry of Justice as part of the court system and their hearings are often heard in magistrates’ courts, asylum and immigration buildings, or social security offices which is very stressful for parents who have not done anything wrong other than disagree with the provision proposed to support their child by the local authority responsible for meeting their special educational needs.

This issue will be one of the topics under discussion at a conference called Towards a Positive Future, which Janet is holding in Newbury, Berkshire on Saturday, 16 June, where speakers will include Jane Asher, president of the National Autistic Society.

Janet, who founded Wordswell (Speech and Language Therapy Services) near Ely, Cambridgeshire, says the event is aimed at parents of children with special education needs and the professionals who support them. Janet will be speaking about the daunting and intimidating process of appeal for parents.

Janet says: “It’s disappointing that local authorities do not seem to be currently negotiating with parents, which results in more appeal hearings and higher legal costs for those parents who use expensive specialist solicitors and barristers to represent them. On average I have attended two tribunal hearings a month as an expert witness for speech and language therapy; in January 2012, there were 12 in the diary and I attended eight.

“Since all tribunals came under the Ministry of Justice, hearings have had to be held in government buildings instead of hotels or dedicated tribunal buildings to save money.  This means that instead of a formal business meeting, special education appeal hearings are now held in magistrates’ courts, asylum and immigration buildings, or social security offices.  Often there is security on the door like an airport to scan and search all bags and people entering the building. The whole process is increasingly stressful – and all because parents dared to disagree with the provision the local authorities are offering to support their child who through no fault of their own has special educational needs.

“The legal costs have also escalated for parents who seek legal representation. Just five years ago parents were telling me that their legal bill was on average £7,000, now they are telling me it is more than £20,000.”

Tania Tirraoro, a mother of two autistic sons, Luca, 14, and Giorgio, 12, and author of Special Educational Needs – Getting Started with Statements, believes a much more conciliatory approach is required which would involve a huge culture shift away from the present process so the focus is on the special educational needs of the child, and not the local authority’s budget.

Tania belongs to Family Voice Surrey, a parent carer group to help form the new SEN structure where pathfinder trials are taking place.

She says: “The system has been adversarial for far too long, and it’s not just the framework that needs to change to improve things, but the attitudes of some LEA staff to dealing with stressed and vulnerable parents. Even as the trials are getting underway, parents using the existing system are still being subjected to unnecessary expense preparing for tribunals that the LEA backs out of at the last minute, inadequate proposed statements and fights over placements. A change here would make the biggest difference of all.

“There are many fine ideals in the green paper, but the most important thing is that the pathfinder trials must show that they are workable on a large scale and do, in fact, improve the lives of children with SEN and their families.”

Jane Asher, president of the National Autistic Society, says: “I am very much looking forward to coming to Wordswell’s conference – anything that can help to promote understanding, support and the need for the right education for those on the autistic spectrum is always close to my heart.

“After over 30 years of working with the National Autistic Society I still continue to learn more about this complex condition all the time, and I know I will enjoy meeting the parents, carers, professionals and those with autism themselves who will gather to exchange experiences and to help improve the lives of all those affected. “

Janet has edited a book which was launched at last October’s Conference called ‘Towards a Positive Future: stories, ideas and inspiration from children with special educational needs, their families and professionals’ which includes practical information and support for parents and expert witnesses.

The conference is being held at the Arlington Arts Centre in Newbury on Saturday, 16 June. Early bird tickets cost £80, and £100 after 1 May, and can be booked by calling 01954 253525, or email janetokeefe@wordswell.co.uk 

Please see www.wordswell.co.uk for further information.

Ends.

Notes to editors:

  1. For photos or interview requests, please contact media officer Ellee Seymour on 01353 648564, 07939 811961, or email ellee.seymour@btopenworld.com
  2. Full details of the green paper for special educational needs, please see the Department for Education, http://www.education.gov.uk/childrenandyoungpeople/sen/a0075339/sengreenpaper

I want your statementing stories

I get emails from lots of people with questions about statementing and I do my best to answer them within the best of my knowledge or signpost them to someone who can. I also read lots of stories on message boards from people going through the process who are looking for information or other people’s experiences and so I’ve had an idea.

If you’ve been through the statementing journey with one or more of your children, I’d like to hear from you. Sharing stories can help other people on the same journey and helping people by raising awareness is what this blog is all about. If you’d like to share your story with others via the Special Needs Jungle blog, please email it to me (Tania) at info@specialneedsjungle.com. If you’d like more information before committing, drop me a line. Also, if you have any burning ideas for topics you’d like to see covered, send them in.

Post are usually less than a thousand words and I’d love to include a photo if you wish and/or, if you have your own blog, a link to it. If you’d prefer to remain anonymous, you can change the key names in the story.

I may need to edit for length or legal reasons (we don’t want to libel anyone – even though they may well deserve to be named and shamed!)

Over the next few months, I’ll be writing more about the new SEN process as it develops – there will be more news from central government soon, maybe in the next week or so. Make sure you subscribe by email to the blog so you don’t miss any updates!

Thanks!

Tania

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

 

Special needs stories this week

Some interesting stories this week…

Empowering parents is the goal for Pat

I’m delighted today to introduce a guest blog post from Pat Bolton, who works with a small  team of Participation Practitioners at Parents In Power, Gateshead,  www.parentsinpower.btck.co.uk  Pat works at the coalface of special educational needs and helps parents every day to get the support their children need.

*

Parents In Power is a Parent/Carer Forum. Every Authority has a parent/carer forum and to find out more information or where your own parent/carer forum is located in your area go to www.nnpcf.org.uk . We are independent and  work with some of the most amazing parents of children with disabilities, their strength and fortitude is second to none, no matter what is thrown at them week after week.

I have a son who is now a young man, 19 years old with ADHD, Dyspraxia and Autistic Traits and he is the most awesome of people. His brother who is 17, puts up a lot with his brother and is one cool dude, but one thing is for sure they love each other to bits and boy do they look out for each other.

So I have walked that walk, that long and frustrating journey and I have to say, sorry folks, but it doesn’t end at  16. But I was lucky enough to get my son in an Independent Special School and paid for by the Local Authority.

Every parent/carer that I come across without a shadow of a doubt tells me they are sick of fighting for what they feel their child simply needs and is entitled to in order to lead a normal a life as possible and for their child to reach their potential in whatever that means.

Their problems are nearly always linked with their child’s school and the frustration and energy it takes in trying to get this part of their child’s life right, I mean let’s face it, what a massive part of their lives it is.

Meetings are daunting at the best of times, but when you get into school for a meeting and there is yourself and 7/10 professionals around the table it can sometimes actually be frightening. To prepare parents for such meetings I go through all the issues that need to be addressed, and the points that the parents feel they must point out.  We write them down on what can sometimes be a long list, so in the meeting the parent is satisfied that they have said everything they want to. Or if it is too emotional for them, I will bring these points up for them.

I have gone into meetings where the parents have been an absolute quivering wreck, feeling sick and just wanting to go home, yet just by me saying, “I am with you, you are not alone, I am there to support you” brings out the best in the parent. They are assertive, they get their points across and work down their list of questions. I minute it all for them. When they leave the meeting, although they hardly remember a thing that has been said, they feel so empowered.

That is one of our main aims, to empower parents to be competent and confident in supporting their children.  My biggest concern over the years has been to ensure that when a parent gets their child’s statement to ensure that it is quantified and qualified. So it does not say something like a ‘ systematic programme of speech therapy’. What does that mean? One hour a day,  a week/month/term and by whom. If it isn’t quantified and qualified how can it be legally challenged? A school might interpret that as an hour a month, a parent might interpret that as a couple hours a month. It needs to be fully explained in the statement.

Another part of school life that has really annoyed me are exclusions and as I write this I am eagerly waiting  for the release of the results of the Children’s Commissioner, Dr Maggie Atkinson’s inquiry into exclusions: http://www.childrenscommissioner.gov.uk/  This is due out 19th March 2012 and I will reading this with a fine toothcomb, hoping she has captured the inequalities of exclusions for children with Disabilities, especially those with disability related behavioural difficulties.

My son was excluded 11 times in one year, what did he learn from this? Simply that every time he wanted a couple of days off school to misbehave,  it worked. No matter how hard I worked with the school and I worked a lot harder than the school did on this one, they still excluded him until the day the big permanent exclusion came. My son and I cried together all weekend. The result was an independent special school which could not cater for his academic ability.

For those just embarking on this journey I wish you luck, get as much expert support as possible you will need it.  If you don’t know where to start contact your local parent/carer forum, website address above and they will advise you.

A new SEN Advice service from Contact-a-Family

Contact  a Family, the national charity that helps support parents with disabled children has launched a new SEN National Advice Service.

This service will help families whose child may have special educational needs – we will be able to provide advice and information on any aspect of their child’s education. Help is available through their helpline 0808 808 3555, or post a query on Facebook or Twitter and a SEN adviser will get back to you. Alternatively drop us an email: helpline@cafamily.org.uk.

The service is available for anyone who thinks their child may have special educational needs – whether or not they have a disability or has already been identified as having SEN.

The Contact A Family Service can advise on:

The SEN process – including:

  • Early years
  • School Action and School Action Plus
  • Individual Education Plans (IEP’s)
  • Statutory Assessment/ Statements
  • Annual Reviews
  • Transition planning and education after 16
  • Appeals

Other general education issues as they affect children with SEN, which include:

  • Transport to school
  • Bullying
  • Exclusion
  • Medical needs in school
  • Attendance at school
  • Home Education

You can find out more about the service and Contact A Family in general here: http://www.cafamily.org.uk/families/SEN.html

IT teaching overhaul announced – about time too!

Michael Gove, the Education Secretary has today announced an overhaul of the way IT is taught in schools. This is great news and I hope our school, although not a state school will do the same. I know they already have some plans underway to beef up the computer science element.

I first talked out this subject back in November last year in the wake of companies like Google and Microsoft saying that our IT teaching was putting Britain at a disadvantage for its future in the tech industry. I back this view entirely. As I said in my earlier post, it’s especially important for children with Asperger’s to be exposed to coding at an early age as many (though not all) have an aptitude for IT and the sciences. Certainly Son2 does and it’s important to support and encourage him in a field in which he can excel as an adult. In fact, I suggest they go further and give extension work for more able students as they do in Maths and English.

Below is an excerpt from the Gove announcement:

The move, which is being supported by industry experts including Ian Livingstone – co-founder of Games Workshop, would give schools the freedom to create their own ICT and Computer Science curricula that equip pupils with the skills employers want.

Other experts, including the British Computer Society and ICT professional association Naace, confirm the current National Curriculum Programme of Study is dull and unsatisfactory. Some respondents to a 2008 e-Skills study said that GCSE ICT was “so harmful, boring and/or irrelevant it should simply be scrapped”.

Companies such as Microsoft and Google and Cambridge University are already working with technology education organisations, such as the British Computer Society, to produce free materials for schools. More are expected to follow.

The Education Secretary also said he was keen for high-quality qualifications in Computer Science to be developed, and welcomed industry-giant IBM’s involvement.

Education Secretary Michael Gove said in his speech today:

“As the chairman of Google, Eric Schmidt, recently lamented, we in England have allowed our education system to ignore our great heritage and we are paying the price for it. Our school system has not prepared children for this new world. Millions have left school over the past decade without even the basics they need for a decent job. And the current curriculum cannot prepare British students to work at the very forefront of technological change.

The best degrees in Computer Science are among the most rigorous and respected qualifications in the world… and prepare students for immensely rewarding careers and world-changing innovations. But you’d never know that from the current ICT curriculum. This is why we are withdrawing it from September. Technology in schools will no longer be micro-managed by Whitehall. By withdrawing the Programme of Study, we’re giving teachers freedom over what and how to teach, revolutionising ICT as we know it.

Universities, businesses and others will have the opportunity to devise new courses and exams. In particular, we want to see universities and businesses create new high-quality Computer Science GCSEs, and develop curricula encouraging schools to make use of the brilliant Computer Science content available on the web. ICT will remain a compulsory part of the National Curriculum, pending the National Curriculum review.

Mr Gove mentioned that “We could have  11-year-olds able to write simple 2D computer animations using an MIT tool called Scratch. By 16, they could have an understanding of formal logic previously covered only in University courses and be writing their own Apps for smartphones.”

Son2 has been able to use Scratch to create animations since he was about nine, and has moved on – but then he is exceptional. But because he is, I think an individualised approach needs to be taken where, as I mentioned earlier, the most able are progressed as fast as they can manage with extension work. Teaching Son2 Scratch wouldn’t do much for him. He’s ready to write apps now. But the elephant in the room is – who’s going to teach them? Are we going to sack existing IT teachers and employ people who are experts in what needs to be taught or just send the current IT teachers on courses to upgrade their skills. Either way, it needs to be done soon.

It’s unacceptable to be told, as I was a year ago that, “We don’t really teach coding here.” Well you should and I hope this announcement will also resonate with private and specialist schools like ours who are not bound by the diktats of  the National Curriculum.

To join in with The Guardian’s campaign click here

To read the full Department of Education report, click here

Questions please for my stint at TheSchoolRun

TheSchoolRun website is packed to the gills with great ideas to help your child’s learning. It’s bright, colourful and is a fantastic resource. The site aims to demystify school for parents, giving you all the tools you need to understand what and how your child is learning at primary school. Their informative articles, packed with advice from experts and practical tips from teachers, help parents get to grips with new educational techniques and feel confident about supporting their kids’ schoolwork.

And the week starting 16th January, they’ve kindle invited me to host a Question & Answer board about Special Educational Needs statementing. I’m not a legal expert so I won’t be dishing out legal help but I will certainly be able to offer some great signposting and answer lots of your statementing queries. The board has already begun registering questions that I will be answering as best I can from next week.

To take part, head over to this part of the site. It’s a members site so you’ll need to register if you haven’t already – and if you’re new, a huge amount of great resources awaits you from the site as a whole. Even if you don’t have a specific question, you may find someone has asked a question you’d like to know the answer to.

Which learning resources help SEN kids? Take this survey

Ann Beck, of  The Gift of Learning has asked me to help get her message out about a survey  she’s devised to assess what kind of learning resources SEN children need. See below for details and a link to the survey
“Can you help me to help your child learn?
I have recently started a new business venture with a view to supplying learning resources to parents of children with special educational needs.  As a mum I found it difficult to find affordable resources to help my own son who is dyslexic and suffers from anxiety and so ‘The Gift of Learning’ was born (www.thegiftoflearning.co.uk) .
I’m currently researching which areas of education parents feel they need the most help with and what better way than to ask you directly?  I value your opinions and hope that you can spare me a couple of minutes to answer 4 short questions.
If you’d like to help follow this link http://www.surveymonkey.com/s/8VRRDNG
Thank you!

Teachers didn’t understand my bright sons’ ASD, says Tania Tirraoro (SEN Magazine)

I’ve just been sent a pdf of my article that was in the last issue of SEN Magazine.

The magazine is a great read – lots of useful ideas for anyone – parent or professional – involved in SEN. The have a free trial offer and it’s just £32 a year to subscribe. I take my copy to read while I’m waiting in my car for my boys to finish at school

Click the link here to read  in full about whether teachers find it hard to recognise special needs in bright pupils.

An interesting addendum to the piece, we often hear (and experience) how teachers miss signs of SEN or fob parents off saying, they child is ‘just young’. My sister, herself a teacher with SEN qualifications (a rare bird, is she) says she is often leery of mentioning to parents when she spots a potential SEN problem such as ASD or ADHD in a child. This is because often the parents don’t want to know and can be quite aggressive when the matter is raised by a sharp-eyed and concerned teacher. The pendulum swings both ways….

Click the image below to open the story. SEN Magazine can be found online at www.senmagazine.co.uk. Twitter: @SENMagazine

Resilient Parenting – A Guest post by Lesley McCall, NLP & Hypnotherapy Practitioner

Happy New Year! At this time of the year, we’re often thinking about how we can change our lives, and those of our children, for the better. I’m delighted to have a New Year guest post from Lesley McCall, an NLP practitioner and Hypnotherapist. She is experienced in helping people with parenting issues and with children who have special needs.

_______________________                       

Lesley McCall

Nobody ever warns you do they?  When you have a baby it’s all excitement and blue sky with no hint of a cloud. Nobody ever warns you of the pain you will feel when your child is struggling – it’s like having your own little voodoo doll – they get hurt and you feel the pain. Suffering by proxy.

However if we can learn to be resilient parents it will help our children be resilient too and many studies have shown that resilient children make happier adults.

So what makes us resilient? The short answer is learning to cope with adversity. The gardeners amongst us know that if you raise seedlings on a warm windowsill with no draughts then they grow ‘leggy’ and weak. These seedlings will wilt as soon as they face the cold winds of outside and will struggle to survive. Far better to allow them some cool breezes now and then while they are growing to prepare and strengthen them for the outside world. In the same way our children would never have learned to walk if we had never let go of their hand.

So how do we become resilient parents? How do we maintain our perspective when our children are unhappy?

Think of it like this – if you are drowning then you can’t save anyone else—all that happens is that you both drown faster if you try. But get yourself into a boat and you can pull them in too.

Some Techniques that may help:

1. Positive Future Pacing

Anxiety is all about the future – anxious people imagine all sorts of disasters approaching. If all you can see is oncoming disaster, no wonder they are scared. When your child has challenges it’s easy to fall into the trap of seeing the worst – but that’s no use to either them or you.

The truth is that you really don’t know what lies ahead. No matter what you have been told by medical professionals, health workers, well-meaning friends – they don’t know for SURE how it will turn out – nobody does. If someone tells you that in all probability such and such will happen say ‘How do you KNOW ?’ Always believe in the best possible outcome – you never know, it might happen.

2. Challenge negative thoughts – yours and your child’s.

The most influential person you listen to is you– so be careful what you say to yourself. Challenge negative thoughts – are they really true? How likely are they to happen?

3. Learn to be selfish from time to time- without guilt

Your child needs you to be strong – if you are stressed to the point of illness how is that going to help them? So take care of yourself so you can take care of them – eat well, learn to relax, take time out for you when you can. This all makes you stronger – better able to support everyone else.

4. Think Straight- perspective!

Don’t make problems worse than they are – and don’t invent them. If it hasn’t happened then don’t think about it – it may never happen.

5. Reframe the negative to the positive

‘My child can’t do ….but they can do

‘This is never going to happen…..but something better might’

‘I can’t see a solution to this ……yet’

6. Remember – you and your child see things differently.

What hurts you might not bother them. Your child is not you. For example: if you are an extrovert then you might hate being on your own but if your child is an introvert then they may need to be alone to ‘recharge’ their batteries. They may not see being alone as a problem. Do not impose your ‘model of the world’ on them – they have different ideas, beliefs and views to you. If they say they are okay – believe them.

Finally always remember that there is no such thing as a perfect parent. If you offer your child unconditional love, support and approval then you – and they – are doing well.

If you would like my free relaxation techniques please contact me on

Lesley@thirdattic.com or contact me via my website, www.lesleymccall.co.uk

Special Educational Needs stories of the week

This will be the last one of the year as i take a break and concentrate on my boys for Christmas. Have a great Christmas. If you do something different to accommodate the needs of your child, would love to hear about how you manage with the festive season.

Don’t forget my Christmas Giveaway – you just have to go to www.facebook.com/specialneedsjungle and ‘like’ it and you’ll be entered in the draw for a copy of my SEN book, Getting started with Statements – even if you don’t need it yourself, you may know someone who does.  If you already like the page, just leave a comment asking to be entered.

SEN & Special Needs Stories I’ve spotted this week

Here’s my usual round up of the more interesting special needs stories in the UK this week.

SEN Magaine: Better Futures group calls for ADHD assessment at second-term exclusion 

WebTV: “What’s the difference between a problem child and a child with a genuine problem such as ADHD? – Video « Special Needs Jungle

BBC News:  Slow starting pupils ‘don’t catch up’  This makes interesting reading

Dept of Education: New Studio Schools to bridge gap between school and work  I think this is a great idea- do you?

Made For Mums: Choosing the right school for your child with learning difficulties @MadeForMums

National Autistic Society: Autism journal available free for limited time FULL of interesting research look while it’s free

Not As Advertised Blog: Advice needed for teenage party for AS son with new girlfriend! See my post

The Observer: It’s our narrow view of education that holds pupils back | Yvonne Roberts | Comment is free

OnMedica: GPs to be offered help in identifying autism – About time!

National Children’s Bureau: Strong opposition to cuts to disabled children’s benefits 

If there’s an interesting site you think I should know about, please send me the link.

Tania

 

“What’s the difference between a problem child and a child with a genuine problem? – Video

I’m delighted to highlight a programme about identifying a child with ADHD. Do you recognise your child from the descriptions in the video?

“What’s the difference between a problem child and a child with a genuine problem?

Watch our webTV show where Lorrine Marer, Behavioural Specialist and ADHD Coach, shares her practical advice on the subject.

With Christmas just around the corner, children are sure to become easily distracted, excitable and impatient at the thought of all the presents they soon get to unwrap.

Along with all the added stress of present buying and manically organizing Christmas parties, this time of year can also be a nightmare for mums and dads when it comes to handling their child’s behaviour. This could not only be affecting home life but also having an impact in the classroom and proving to be a distraction for other children at school. Furthermore, figuring out whether your child is just being a typical excited kid at Christmas, or whether they might need specialist help with their behaviour, can be hard to decipher during the festive season.

So how can you really tell whether your child is suffering from a genuine problem or whether their inability to focus is just ordinary child behaviour? Do you feel at your wit’s end, or do you often think you might be reading too much into the way your child behaves?

If you answered yes to any of the above then watch our webTV show on Monday 12th December at 2.30pm with Lorrine Marer, behavioural and ADHD expert who will give her practical on the subject.

Watch our webTV show on: http://www.studiotalk.tv/show/whats-the-difference-between-a-problem-child-and-a-child-with-a-genuine-problem

SEN round up for this week

Below are stories with an SEN angle that caught my eye this week.

Have I missed your story? If so, send your RSS feed link to me via my Contact page

Book Review of Special Educations Needs: Getting Started with Statements

Special Educations Needs: Getting Started with Statements – the parent to parent guide to getting your child the help they need

Reviewed by NAS Surrey Branch member Emma Searle, mother of a 4 year old recently diagnosed with ASD

SEN-Getting Started With Statements

“This is a brilliant little book. We are just starting on the statementing process and it’s a bit depressing to find that it’s such a battle, but it is refreshing to get an honest and real account of what happens. I really liked the detail on the process – for example, I hadn’t realised that you don’t have to stick to the form to give your evidence, but can write your own account. It was really useful to have all the detail and being able to read extracts from other people’s statements is invaluable.It shows you how to use the SEN Code of Practice – I haven’t seen any other examples of this. Because it’s written by parents for parents, it can give you information you don’t get on official we sites. I found it quick and easy to read and easy to dip into when you’re waiting at school for example.”

A huge thank you to Emma for taking the time to write the review and I hope very much the book has helped you so far. If anyone else has found the book useful and would like to leave a review, I would be delighted if you would post it on the Amazon book page

IPSEA – A wonderful charity for free advice and support for SEN

In my book, Special Educational Needs, Getting Started With Statements, I make several references to a special educational needs charity called IPSEA.

IPSEA provide free advice and support for people who have children with SEN and offer an invaluable service. Today I am delighted to have a guest post from the charity’s Chief Executive, Jane McConnell

Jane McConnell, Chief Executive of  the Independent Parental Special Education Advice charity or IPSEA, became an IPSEA volunteer 10 years ago. She has been a paid IPSEA staff member for the last 7 years and has a 12 year old son with complex SEN. Jane has overcome several substantial hurdles to get the right education for him and has firsthand experience of what thousands of parents have to go through. Here, she explains what IPSEA are all about and how the charity can help you:

What is IPSEA?
IPSEA is a registered charity providing free and independent legally based advice for parents whose children have SEN / disability. We have been supporting parents since 1983. IPSEA covers England and Wales. We use highly trained volunteers to deliver all our advice and support. We offer more support to the most disadvantaged families. A small team of paid part time staff co-ordinate and train our volunteers.

What does IPSEA do?
IPSEA advises families whose children have all types of SEN / disability, including behavioural problems, communication difficulties, learning disabilities and autism. IPSEA often helps families before their child has even been diagnosed. IPSEA’s legally based advice gives parents the confidence to exercise their rights. This basic understanding of the law equips families to be more involved in the decisions that affect them and helps them to avoid future issues. IPSEA helps around 3,000 families each year – thanks to our dedicated volunteers and supporters.

How can IPSEA help me?

IPSEA offers parents the following free services:

Common problems

Many simpler and common issues with the SEN system can be resolved with the help of IPSEA’s on-line resources:

What parents say about IPSEA

Our website has quotes from parents we have helped. We survey the parents that have used our services to ask them for feedback. Their feedback helps us improve our services and secure the funding we need to keep them going.

Using parents’ experiences to influence change

IPSEA gathers evidence and uses it to lobby for changes to current legislation. We also attempt to correct the practices of local authorities whose policies are not in line with legislation.

1,039 people took part in our SEN Green Paper survey. 796 of them were parents of a child with SEN. They agree with IPSEA’s strong belief that parents’ views need to be listened to and respected by the professionals responsible for assessing and educating their children. Without this basic respect, mistrust builds up. This can have a detrimental effect throughout the child’s education. IPSEA’s full response to the SEN Green Paper proposals is here .

IPSEA works constructively with the government. We were particularly pleased that the new administration activated the right of parents to make an appeal to the SEND Tribunal if their child’s Statement did not reflect the needs of the child.

We gave evidence to the parliamentary education committee on the SEN Green Paper. We also successfully campaigned to protect legal aid for SEN appeals.

Keeping IPSEA going

It costs IPSEA around £30 to provide telephone advice to a family and around £300 to provide a tribunal caseworker. We appreciate all the donations we receive. You can donate using PayPal or debit/credit cards. You can also set up regular donations.

IPSEA is always looking for more volunteers. You need to complete our training first. This training is very thorough so we ask you to commit to actively volunteering with us for at least 2 years. “I enjoy the feeling of empowering parents – talking them through their problem and sending them off with a clear plan of action” says one of our experienced volunteers.

SENAC for Special Needs Advice in Northern Ireland

If you’re in Northern Ireland and you’re looking for help with getting your child the special educational needs support they require, there is a service for you. The Special Educational Needs Advice Centre, or SENAC,  is a regional charity set up in 2003.

They provide FREE independent advice on behalf of children and young people with disabilities and special educational needs (SEN) attending schools in Northern Ireland up to the age of 19 years. SENAC offers  information to parents and carers on all aspects of the statutory framework of SEN provision in Northern Ireland.

SENAC also offers an individual advocacy service for children and young people and work with parents to facilitate positive communication with schools and assist them to make more meaningful representations of their child’s needs.

SENAC OFFERS:

  • An independent and confidential telephone advice-line service, providing advice and information to parents/carers at all stages of the process for the Assessment and Statementing of Special Educational Needs.
  • Written information and guidelines on the Assessment and Statementing procedures both on this website and in print on request.
  • Assistance to parents in understanding policies and procedures in relation to their child.
  • Information on contacting other relevant organizations.

SENAC operates an Advice Line on 028 9079 5779. Further information can be obtained from their website www.senac.co.uk

Why I’m backing the call for a revolution in ICT teaching

My younger son (or Son2 as he’s known around here) is a 12 year old computer wizard. He has so much computer equipment, wiring and accessories that I have nicknamed his room, ‘The Technolair’.

Ze PurpleGentelmanne (Son2)

At school he does ICT where much of the subject matter he could actually teach the class himself. At home he is part of the army of Minecraft addicts, he makes his own amusing graphics on DeviantArt and animations that he uploads to YouTube. He has taught himself how to do all of this.

Today I heard on Radio 4’s Today show about how some of the biggest firms in hi-tech, including Google and Microsoft, are calling for major changes in how the UK teaches computing to give Britain the skills it needs to compete. I whole-heartedly endorse this. While learning Office-based programs like Word, Excel and Access are very useful, my son, who has Asperger Syndrome and enough challenges in his life as it is, could use a leg up by being taught coding.

The problem, here, is that do our Secondary School level ICT teachers have the up-to-date skills in coding to teach young people? If not, schools need to buy in some expertise or training. And, if companies like Google and Microsoft are calling for a revolution in ICT, perhaps they would like to put their hands in their pockets and offer some funding to provide these experts, or the training opportunities for our existing ICT teachers to help them create the computer geniuses of tomorrow.

In my son’s case, even an after-school club would be enough to give him the basics and he could take it from there himself. For young people with certain difficulties such as him, any help in their areas of strength should be given the utmost priority. He already wants to build a computer from scratch but even though I’m a little bit geeky myself, such a project may be beyond me, especially as he has a unique learning style and his brain works in ways that are hard for most people to fathom.

There is a project called http://www.computingatschool.org.uk/ that has lots of free resources for teachers and young people including an exciting-looking competition called Codebreaker. There is also a cheap computer system called Rasberry Pi whose developers are designing an ultra-low-cost computer for use in teaching computer programming to children. Their first product is about the size of a credit card, and is designed to plug into a TV or be combined with a touch screen for a low cost tablet. The expected price is $25 (£15) for a fully-configured system. There is an informative article in The Register about it.

As soon as I can, I’m going to get one of these babies for Son2 for whom we are currently designing a new larger bedroom to his precise specifications. The new, improved Technolair will no doubt be raided by police at sometime in the future after he has taken over the internet – which is why he needs expert guidance in focusing his computer genius for good, not mischief. I am joking here, but the serious point is that we need the coding experts of today to help disseminate their knowledge in practical ways to the next generation inside schools. That takes investment and the will of companies such as Microsoft, google and the Double Negative company of Alex Hope, who spoke on the Today programme this morning, to turn words into action today.

Alex Hope is also the co-author of a report called Next Gen, described as a landmark report setting out how the UK can be transformed into the world’s leading talent hub for video games and visual effects. he clearly knows what he’s talking about so hopefully people who can make this a reality will listen.

Now, will Government and IT companies please form an orderly queue and get on with it?

SEN Stories of interest in the last week

Below are a few of the more interesting stories I’ve seen about SEN in the past week. If you’d like to receive this weekly update in your inbox as well as other Special Needs Jungle posts – subscribe on the left by email or on the right to the RSS feed.

My article in SEN Magazine: Can teachers recognise SEN in bright pupils?

I have an article in the current issue of SEN Magazine, entitled Can teachers recognise SEN in bright pupils.

Me & my boys circa 2003

Both my sons, Giorgio aged 12 and Luca, 13, have Asperger’s syndrome, and both are extremely intelligent. Luca, however, struggled with understanding the norms of behaviour, was prone to emotional or physical outbursts and was virtually friendless. He needed to be first in everything and this constant rushing affected the quality of his work. Giorgio, a gentle soul, could read at three, but still struggles to write legibly. Group work was impossible and his original way of thinking made it hard for him to follow instructions. One teacher remarked that, “He has informed opinions which he expresses well but they are often tenuously linked to the subject matter.”
Before they were diagnosed, their infant school tried behavioural charts for Luca, and eventually, after I insisted, a literacy software programme for Giorgio. However, when you don’t know why a child is experiencing problems in the first place, it’s difficult to put the right help in place….

To read the rest of the article, click here (SEN Magazine website)

1-2-3 Magic – the discipline system that saved my sanity

When you have children on the Autistic Spectrum, finding an effective solution to help with discipline is not easy. Out two AS boys are high-functioning but often did not realise that they had reached the limits of what was acceptable behaviour. Our sanity as parents was sorely tried at times until I came across a book recommended to me by Nancy Williams of The Studio ADHD Centre near Dorking. Nancy does amazing work with the young people that come to her, including our eldest who, at the time, did not have a full diagnosis.

The book in question was 1-2-3 Magic: Effective Discipline for Children 2-12 (Advice on Parenting)
by Thomas Phelan. If you’re thinking, oh it’s just counting, and that doesn’t work with my kids, then you might be surprised to find, as we did,  you’ve been doing it the wrong way.

The system is all about getting control back in a calm and effective manner and helping your children understand that you set the boundaries, not them. In order for it to work, you MUST be consistent, and carry through consequences religiously. This means consequences must be proportionate and deliverable.

We explained to the boys, as the book tells you to, that we were using a new system for discipline, what it entailed and that if we reached ‘three’ there would be consequences that they didn’t very much like. This included removal of privileges, electronic gadgets, TV time, Xbox for a set period and it would be stuck to. Whining about it would result in no discussion, just another count. Well, it was worth a try and, although I will let you read the whole system for yourself in the book, I will say it certainly worked for us.

In fact, when the boys started up and my head felt like it was going to burst, instead of losing control, I would just say calmly, “Ok, that’s a one.” No discussion, no further attention paid to the culprit while he digested the number. I felt instantly back in control. The decision to behave or not was his and he knew if he continued, two would follow one as surely as night follows day. After a few goes, it began to work so well that we rarely got to three.

It works because it is unambiguous. Children know what it means and they know you mean it and will follow through. This is good for children on the spectrum who need continuity and stability. I can’t say if it would work for children whose autism is more profound as I only have experience with my own boys. But it certainly has the potential for great succcess with Asperger’s and ADHD kids. And it works for parents too. It gives you back control without being overbearing. It helps you draw a line in the sand: this behaviour is acceptable, that behaviour is not. I would never claim to be an expert in behaviour, I’m just recommending to you what worked for us.

These days we don’t have to use the system much but it still works. The other day, my almost 14 year old was driving me insane. Suddenly, I remembered the 1-2-3 Magic system. “Okay, I said, that’s a one for you.”

He stopped what he was (annoyingly) doing and looked at me. “Are you counting me?” he asked incredulously.

“I think you’ll find that I am,” I replied, in a mild tone that did not reflect how irritated I felt inside.

“I’m thirteen!” he said. I shrugged and raised my eyebrow. He looked at me some more, then went off to do something else that was not annoying. Amazing, and proof that a system well-implemented and consistently applied can work.

The book has developed into a series. There’s a 1-2-3 Magic for Teachers: Effective Classroom Disciplines , workbooks and one we’ve just bought, Surviving Your Adolescents: How to Manage, and Let Go of, Your 13-18 Year Olds that I will report back on. It’s hard to know with our Asperger’s boys what behaviour is as a result of their AS and what is just teenage-ness. I am confident this book will give me some tips that I will be able to apply.

I’ve just found Thomas Phelan on Facebook and Twitter and he also has a newsletter.

My article in SEN Magazine – order a trial copy for free

I’m very excited as I have an article in the new edition of SEN Magazine. It’s in their ‘Point of View’ section, entitled “Recognising The Problem”. It’s about how, in order toaccomodate a child’s special educational needs, it is imperative first correctly to identify the problem. This is often difficult when a child has complex needs or a ‘hidden disability’ and the teacher is not trained or motivated to recognise the signs, particularly in otherwise bright children.

I anticipate it will be available online on their site at some point in the future but this is a great publication for anyone connected with Special Educational Needs and you can order a free trial copy at the moment by clicking here: http://www.senmagazine.co.uk/component/chronocontact/?chronoformname=trialcopy

 

You can follow SEN Magazine on Twitter and Facebook. They regularly publish informative and useful SEN articles that are useful for both parents and professionals.

Ritalin, talking therapies and what I think our kids really need…

The Health Minister, Simon Burns has said that the chief medical officer and the NHS medical director are planning to write to clinicians to remind them of the full range of NICE guidelines on conditions—including ADHD—that affect children’s mental health. It came in response to an adjournment debate on 25th October 2011 called by MP Pat McFadden on the rise in prescriptions for children of the drug methylphenidate (Ritalin, Equasym etc) used to treat people affected by the symptoms of attention deficit and hyperactivity. These symptoms affect behaviour and the ability to learn and as well as being found in ADHD, are also co-morbid in young people with autism, Asperger Syndrome and other similar development disorders.

Mr McFadden made a plea for the Minister to carry out a proper, comprehensive review of the use of these drugs involving professionals from the medical, psychology and teaching fields, as well as the families of those who have been prescribed the drugs. He asked the Minister, “Will he commit his Department to carry out a proper research project into the use of the drugs, including the age of the children receiving them? Secondly, in the light of the huge growth in prescriptions, will the Government carry out a proper review of practice in the field, as called for by the Association of Educational Psychologists, before the new guidance comes into effect in 2013?”

Mr Burns said he himself had a family member who was successfully being treated with Ritalin. “Across hospital and primary care, the prescribing of drugs for ADHD increased by around 12.5% between 2007 and 2010, the latest four years for which data are available, and by around 6% in 2010 alone. Prescribing in primary care alone increased by 22% in that four-year period, reflecting a significant shift in prescribing activity from a hospital setting and into primary care. Looking back further, one sees that prescribing in primary care has tripled in the past 10 years.”

However he pointed out that the cost of doing nothing was too great for those affected and that, if left untreated, mental health problems can lead to low attainment in school, antisocial behaviour, drink and drug misuse, worklessness and even criminality in adult life. He said, “Getting things right for children and their families—through a broad range of support to promote good mental health from the start of life, through the school years and into adulthood—can make a real difference to young lives.”

Yesterday, the government announced a further £32 million pounds for child mental health services, including talking therapies. While this may seem like a lot, when split across the country, it might not go as far as hoped. Talking therapies take time and require therapists qualified in techniques such as cognitive behavioural therapy, particularly in its use with children. I believe that this issue should not be looked at in isolation. It is an educational, parenting and medical issue all at the same time.

In educational terms, it should be looked at whether the right learning environments are available to teach children for whom sitting still in a classroom is impossible. There is plenty of practical advice available giving tips and strategies to help manage students with ADHD and help them thrive in a regular school environment. What is needed is the will to implement them consistently at a classroom level. That takes teacher training. And when I say consistent – that is key. One of my sons one year in mainstream had a teacher who managed him well. The next year he moved into a class with an older teacher who didn’t even realise he had a diagnosis, let alone the will to adapt her teaching style to help him. It’s no use having teaching assistants who are just mums looking for a part-time job. If they are to work with learning disabled children or those with attention or hyperactivity issues that may be clouding their true ability, the TAs need to be well trained. Some are and sadly, some aren’t. That’s not good enough. Our ASD sons were both treated for a while with medication. But they no longer need it because they are now in the right educational setting. This is not only my view, it was  the opinion of their paediatrician, an experienced and well-respected man.

Parenting wise, parents who have children with difficulties need support. They need to learn techniques to manage their children effectively and I’m not talking only talking about parents from lower down on the social scale. Just because you have a good job or a good education does not mean you come automatically equipped with the parenting skills needed to cope with life in a household where there is constant stress and discord because of the behaviour of one of your children. I know, I’ve been there and I know plenty of other middle-class good parents in the same boat.

Medically, and here we come back to Mr McFadden’s debate in parliament, we need GPs who don’t fob parents off, and we need specialists who listen to parents and who have the knowledge of and access to, up to date research and therapies pertaining to children’s mental health. They need to be able to work with parents, schools and CAMHS together to be able to put the right package of treatment together for the child concerned. Yes, it takes time and money – well they’ve just given £32 million, so there’s cash to be spent. But when you are talking about a child’s future you cannot take a piecemeal approach. Questions such as why is the child having the behavioual isssue – is there an underlying medical condition? Are they dyslexic? Do they have a speech and language problem that has gone unrecognised? A holistic approach is needed. Many of children like these turn out to be gifted in one area or another and need to be given the chance to let their talents find a way to the surface. If nothing else, in the 21st century and with all the research already available it should be within our power to help some of our most vulnerable people to thrive.

Lastly – and this is key. the media should stop being so damn judgemental of parents and children with behavioural problems and yes, Daily Mail, I’m talking to you and your readers who are so quick to condemn and who publish ill-informed opinions and blatant untruths about this already embattled section of society. I believe the reason the Health Minister, Mr Burns, gave such a thoughtful and informed response was because he himself has personal knowledge of the issues. Which just proves the adage about walking in other people’s shoes.

GAPS – Early screening test for Specific Language Impairment & Dyslexia

Have you heard of GAPS? The chances are, the answer is no. And yet it’s billed as a highly accurate, easy to administer early assessment tool for detecting dyslexia and other language deficiencies in children.

It was developed by Professor Heather van der Lely, an eminent academic, using a friendly alien character called Bic, as a way of identifying children with language difficulty. It can be given by parents and professionals alike and uses repetition of sentences and non-words to identify children with a weakness in language, at risk of dyslexia or specific language impairment and those in need of further assessment and help.

It’s estimated that seven per cent of children have Specific Language Impairment (SLI) while ten per cent of children are estimated to have dyslexia. That’s a lot of people at risk of not reaching their full potential if they don’t get access to the help they need. The GAP test is designed for children between the ages of 3½ and 6½ and can be completed in as little as ten minutes to assess grammatical abilities and pre-reading skills (phonology) using standardised scores.

50% of children with Dyslexia have (undiagosed) Specific Languge Impairment; and 50% of children with SLI have Dyslexia too so these childre really need to be identified and helped so that their life chances are not limited by these problems.

Professor van der Lely’s aim is that all children in the UK will be tested prior to or when they enter school to try to ensure that any child with language weaknesses or impairment or at risk for dyslexia is identified.

However, since the test was launched in 2007, it has only been adopted by a minority of schools despite the test costing just £25 for professionals whoa re provided with 25 forms.

Obviously, once a test is carried out and a child has been identified, something then needs to be done about it. The problem here is that there is a lack of speech and language therapists in the public sector with more and more turning to private work. This is not, of course, a reason not to do the test in the first place so if schools are not taking it up, then perhaps parents who suspect that their child has an issue with language learning might want to order the test for themselves.

The Parental version (with 5 forms) costs £50 and Professional version (with 25 forms) costs £65. Thereafter forms only cost 80p each per child to test.

You can see a validation study of the system here. To find out more about GAPS, visit the GAPS website.

SEN conference, Towards a Positive Future, Review part one.

I attended a very interesting conference on special educational needs on Friday. It was held to mark the launch of a new organisation aimed at providing a ‘one stop shop’ to parents needing to find professional services such as speech and language and occupational therapy for their children. It aims to establish a database of professionals who can work with children in teams that talk to each other and deliver a seamless service for the child. It’s still at an early planning stage and its founder, SLT professional, Janet O’Keeefe, is actively looking for ideas and people willing to join her.

The event also marked the launch of Janet’s book, Towards a Positive Future, which I have written about here.

The conference had several interesting speakers some of whom I hope to be able to bring you more from on this site in the weeks to come. The event was held at the Mary Hare School for hearing impaired children near Newbury. The school does inspirational work in providing an education for its pupils, helping each through individually designed hearing equipment. As a non-maintained state school, the school’s head, Tony Shaw, said they are ‘not considered to be part of inclusion’ and have had their funding cut by central government. This, despite the Education Secretary, Michael Gove, himself having a sister with a hearing impairment.

The school has had to diversify to survive, establishing an ear mould lab that services the NHS. Despite this, Mr Shaw says they never forget what they’re there for. He said, “At the core are the children we have the passion of serving.”  It’s a sad fact that, in the politics and cost-cutting of government both local and national, this message is too often overlooked.

Another speaker was Kevin Geeson, CEO of Dyslexia Action, who talked about the opportunities and risks of the Green Paper. He highlighted concerns about the assessment of hidden disabilities such as dyslexia in that it may not be picked up early enough and the question of who will control the personal budgets given to children to provide for their SEN. Mr Geeson said the Green paper brought an opportunity to provide the proper skills and support for teachers to include all children in the curriculum. He said, “Good teaching for children with hidden disabilities is good teaching for all.”

Education solicitor, Inez Brown of Anthony Collins solicitors, set out the legal framework and funding of special needs and pointed out the problem with parents appealing against SEN decisions for children at the new Academies because the Academies do not fall within the Education Act. She also pointed out that the Green paper removes Speech and Language and Occupational Therapy out of educational provision – something every parent of a statemented child should be aware of. This means that the local authority cannot be challenged about these things at a Tribunal.  Ms Brown also made a startling  statement about the trialling of the new green paper which has just been announced and I am hoping she will be writing more about this on this site very soon.

The conference also heard from internationally acclaimed academic, Professor Heather Van Der Lely who has developed an early-identification test for dyslexia called GAPS. I will write a separate piece about this so won’t go into detail here. The professor pointed out that seven per cent of children have a specific language impairment – seven times the incidence of autism. She is trying to bring about the widespread use of GAPS which, she says, is quick, efficient and highly accurate. The crucial issue is, of course, that there are not enough Speech and Language Therapists to help all those that the test could identify. Perhaps the government should focus on how to recruit more SLTs into the profession and create a environment that enables enough of them to stay within the NHS.

The next post will detail the speakers from the afternoon session of this very enlightening conference.

Links for this post:

http://www.dyslexiaaction.org.uk

http://www.AnthonyCollins.com

GAPS

Mary Hare School

Twitter: @JanetOKeefe@kgeeson

One Mum’s Statementing Views

Here is a parent’s view of the statementing battle for her son and her advice about the process. I wish I could say this mother’s story was unusual, but other parents will recognise features of it in their own efforts to get the right education for their children. Thank you to the mum who has kindly allowed me to publish it here.

“Our first hurdle was with the school not recognising or knowing how to cope with a processing issue – if the child can’t process what the teacher is saying, learning doesn’t have a chance. As parents, it took us a long time to realise the implications of this at home and we experienced outrageous behaviour not realising that the child wasn’t just being belligerent but that his understanding of what words meant and the complexity of how they were presented to him were totally beyond his comprehension. Any number of parenting books didn’t fit the bill until we found ‘The Explosive Child’ by Ross Greene.

As soon as you feel your child has a learning issue, make sure you keep notes of meetings you have with the school Senco and email them to them after each meeting to confirm that your recollection is correct. (Also ensures that they have a record on file.) Challenge learning plans – if your child isn’t meeting the targets on learning plans, try to get to the bottom of it rather than allowing the school to gloss over it.

Schools, the School Educational Psychologist and the Council will procrastinate as much as they can – the classic is having to wait weeks for meetings and then having them rearranged at last minute to push them further back. Meetings cost money and budgets are tight so your child’s needs are not the top priority – he or she really does need you to fight their corner. This is really hard for the parent who doesn’t feel particularly articulate or confident but they need to overcome this reticence.

Private tests (OT, Ed Psych, Language, etc) are really expensive – ensure that the recommendations are very clear and quantifiable stating how many hours each week of what help is needed and by what level of professional. Any opportunity to put an untrained teacher’s assistant to provide specialist help will be taken if there is any ambiguity in the recommendation.

SOS!SEN provides a great service in Twickenham. We used solicitor Robert Love because we felt incompetent to fight a case where the school wasn’t supporting the statement application (the teacher wanted to but the school wouldn’t!) One of the most galling aspects of it was when the Council didn’t turn up to the tribunal – surely there should be a case for Councils paying for the cost of the tribunal when they abuse it in this way.”

You can read more stories like this in my new book, Getting Started with Statements. Ebook out now, paperback coming very soon.