Research backs Emma’s FACS battle

One of my fellow special needs mums, whom I met over Twitter, Emma Murphy, is spearheading a campaign highlighting the emerging dangers of taking the Epilepsy drug Sodium Valproate (Epilim) in pregnancy after many cases have emerged of children born to mothers taking the drug had developmental difficulties and other disabilities. It’s being described as ‘the new thalidomide’.

Emma and one of her children

Emma and one of her children

Emma Murphy has already made a splash with her campaign and today there is an article in the Telegraph about research which bears the anecdotal evidence out.

The findings were published online in the Journal of Neurology Neurosurgery and Psychiatry. Researchers at Alder Hey Hospital in Liverpool, studied 528 women in the north west of England. Just fewer than half the mothers had epilepsy and all but 34 of whom took anti-epileptic drugs during their pregnancy. Fifty nine mums took carbamazepine; 59 took valproate; 36 took lamotrigine; 41 took a combination; and 15 took other drugs.

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A morning with Monty, a very special boy.

My good friend Angela, who is my ‘co’ in co-chair at Family Voice Surrey, always has an air of unflappability. I’m not quite sure how she does it.

As well as being the parent of two sons with ASD, she is studying to be a psychologist. Angela’s younger son, Monty, is a delightful boy who attends a special school. But his ASD means that, like other children with autism, he has a schedule and a sense of reasoning all of his own that can be exhausting.

Here, Angela writes for SNJ about a morning with Monty.

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In the distance I can hear screaming. It sounds terrifying and it’s coming closer.

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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.

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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.

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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.

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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.

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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

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

I happened upon a new blog via Twitter the other day, which told a powerful and emotional story about a young girl who suffered childhood stroke, was close to death, but with the help of a devoted mother and family and a dedicated medical team has pulled through.

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.

I found Leila’s blog within days of publishing a post about The Brain Injury Hub and contacted her to pass on the resource. Leila, in turn, has written about Charlotte’s fight for life for Special Needs Jungle as a way of highlighting childhood stroke and the devastation it leaves.

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Leila

Leila

For the last 12 years, I have had two beautiful, intelligent, high achieving, happy, healthy daughters. I’m a single Mum and the 3 of us are very close and have possibly the girliest household in the world.

However, on Friday 13th April this year, our world came crashing down around us as I woke up to my youngest daughter, Charlotte (7) breathing very oddly. At first it sounded like snoring but then I realised she was missing a few breaths each time. I tried to roll her over off her back thinking this would help and realised instantly that something was badly wrong. She was cold, floppy and unresponsive. Every parent’s worse nightmare!

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10 Tips for Developing Your Child’s Language Skills

Vanessa king

I recently met Vanessa King, when she joined our Women in Business Network group in Farnham. Vanessa is a qualified teacher, parent, toastmaster and an expert in teaching confident speaking and is passionate about engaging with young people of every age to improve their opportunities through her new venture, Smart Talkers Surrey.

She believes that competent communication is key to self-confidence and the ability to create the life you want. Her core belief is that every child, regardless of gender, and regardless of where in the world they live, has a fundamental right to fulfil their potential, and to have the chance to avoid a life of missed opportunities.

Speech difficulties are extremely common among children with special needs. While some need specialist speech and language help for many years and others will never speak, for many, (and this probably applies to many adults too!) simply being helped to develop confidence in their speaking skills can be hugely beneficial.

She’s written for Special Needs Jungle about how, as a parent, you can help your child do just that.

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Being able to communicate our thoughts, feelings and ideas is the most important achievement of our lives and it never ceases to amaze and delight me to realise that such a complex feat is achieved within our first 5 years of life. This skill is not something that develops on its own, however. There is a lot that parents and carers can do to help children develop their language skills. It’s never too soon or too late to start!

  1.  Talk together every day. Talk to your child whenever you can, as you go about daily activities like cooking, bathing, dressing, eating, travelling to preschool or school, getting ready for bed.
  2.  Get down to your child’s level. Ensure your child can see your face when you are talking to them. This helps them focus, lets them see and hear your words better and encourages them to copy you.
  3.  Follow your child’s lead when you talk. Take some time to see what holds your child’s interests. Watch what they look at, touch, hear and reach for and talk with them about these things.
  4.  Talk about what you are doing and ‘think out loud.’ Talk in simple words about what you are doing as you do your daily activities to develop your child’s vocabulary, for example “I am cutting carrots into circles.”
  5.  Be positive. Use lots of encouragement and tell your child what they have done well. Use specific words. “I like the way you used your words to ask for that,” and “The red colour in that picture looks great.”
  6.  Model new words. Tell your child the names of things they have not seen before. Teach them new action words when you do things together. Teach them describing words by talking about what they see, hear, touch, taste and smell. Include words about size, shape, colour and feel.
  7. Recast your child’s errors. If your child makes a mistake when talking, repeat the sentence, fixing the mistake to show them the right way. Use a positive tone and repeat it a few times but keep it natural. For example, child: “I runned,” adult: “Yes you ran, you ran very fast, you ran right to mummy.” Try repeating this same word a few more times later on, so your child gets lots of chances to hear it the right way.
  8. Use lots of repetition. Young children learn though repetition. Repeat new ideas, words and concepts over and over. Repeat stories and songs too. Repeat new words and ideas in different places, times and situations to help your child learn the full meaning and understand different ways the word can be used.
  9. Read lots of books together. Reading to your child is one of the best things you can do to help them learn. Make it a part of your day every day. Read new books but also old repeat old favourites. Choose books which suit your child’s age, language level and interests. Talk about what you read and ask your child questions.
  10.  Embrace new experiences. Try new places, games, songs, books and activities with your child. Do something special and different every chance you can as this opens up new words, ideas and concepts to talk about.

Smart Talkers helps your child become a confident, successful and effective communicator. If you would like further information about the courses we offer parents, childminders and Foundation Stage teachers, please contact Vanessa at smarttalkerssurrey@gmail.com or phone 07769 114 755. If you are elsewhere in the country or even in some places overseas, there are various other locations to access Smart Talkers.

Find Vanessa’s site here  and her Facebook page here

 

Does child protection protect children?

This is a reblog of a great post from Debs at ChaosinKent. Debs is one of my personal heroines. She has three kids with special needs and is just an excellent human being. Do click through to read the whole thing.
The ultimate tragedy is not the oppression and cruelty by the bad people but the silence over that by the good people.
 There was a recent report in The Lancet stating that 1 in 4 disabled children are the victims of abuse.  This report was based on 20 years of data from 17 studies (from 1990 to 2010) and involving more than 18000 children.
The authors of the report sadly added that the sitution is possibly even worse than their data shows.
“The results of this review prove that children with disabilities are disproportionately vulnerable to violence, and their needs have been neglected for far too long,” said Etienne Krug, director of the World Health Organization’s Department of Violence and Injury Prevention and Disability.

Advice for SENCos – the parents’ perspective from Hayley Goleniowski

This post originally appeared on the DownSideUp blog of  Hayley Goleniowski, who writes about life with her beautiful daughter, natty, who has Down’s Syndrome. I thought it was such a great article, I asked her if she wouldn’t mind me re-posting it on Special Needs Jungle. 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.

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Natty at her all-inclusive pre-shook

Qualified with nothing more than being a former teaching assistant, teacher and the blogging parent of a child with additional needs, I put my thinking cap on and set to work to come  up with something that would change the way SENCOs think forever.

 I decided to ask other parents and disability groups what they would say to a room full of SENCOs if they had the opportunity. I did this via Twitter and Facebook, and the response was overwhelming. I printed the replies off, cut them up and spread them on the kitchen table. Interestingly they fell into 3 distinct categories, and echoed my own initial plans for the talk.  I weave the quotes from these parents into what follows.  Thank you to all of you that helped.

Volunteering: The best way to spend your summer

We’re heading off for Italy this weekend and because both boys have special needs, we’ve always rented a villa with a pool and taken their Grandma and Nonno along to help out, so that we can all have a break without worrying about potential public meltdowns.

But imagine if your child has a serious physical illness or disease that makes it difficult to go anywhere without a high level of medical support? Pressure on families like these can be immense and no one needs a break as much as them.

Barretstown, based in Ireland, is a specially-designed camp that provides Therapeutic Recreation programmes for children with serious illnesses and their families. But to make it possible, the camp needs thousands of caring and energetic volunteers every year. My colleague, Rob Pleticha, whose day job is Online Communities Manager for RareConnect at EURORDIS, the European rare diseases organisation, is one of them. He volunteers every year to help children who are living with illness or rare diseases. A short time ago, he spent a week at Barretstown and he’s been kind enough to write for Special Needs Jungle about his experience and the camp.

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You arrive the night before the training. It’s dark but the trees are bright green, the horses are so comfortable, they lay down in the pasture sleeping, and the cabins spread thorough out the grounds emit a warm glow. You sleep well in the Irish night as fresh air fills you.

You’ve come to Barretstown in Ballymore Eustache, Ireland to participate as a volunteer “cara” at an eight-day camp summer session. 120 kids from 7 countries will arrive in two days. They all share the common experience of living with a serious medical condition at a young age.

Barretstown is a member of the European Global Organisation of Serious Fun Children’s Network camps founded by Paul Newman. The five camps in the European network allow over 3,000 children from 26 countries to attend summer camp and have life changing experiences. The services are always free of charge to families.

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Special Free Schools – is it worth it?

A few weeks ago, I was invited to attend a conference about the formation of special free schools. I couldn’t make it myself as I had other meetings, but Claire Louise, from the popular and award-winning, A Boy With Asperger’s blog, kindly agreed to step in and attend for SNJ. Here’s her report:

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Is it worth the hassle (a 100+ page bid and one hell of a load of work) that comes with starting a Special Free School?

There are many factors that need careful consideration, as well as a number of different circumstances each need applying to. For example, Is the school already up and running, therefore requiring just “Free School” status? This could apply to any school (independent & non-maintained) this excludes that of state schools who can instead apply to become academies.
Maybe you are considering starting up a Special Free School from scratch. It may only exisit on paper or an idea in your head. Maybe its because there is a gap in SEN provision that needs filling, therefore an idea of a Special Free school makes sense.

So as not to confuse anybody (as we all know these things can be mind boggling) I’ll therefore take this one step at a time and will try to be a clear as possible as I do.

Firstly, What is a Special Free School?

A Special Free School is one that is funded by the Government yet run independently. So, you may ask how these are any different from independent schools? Independent schools are not reliant on the government for funding, instead these schools are funded by a combination of tuition fees, gifts, fundraising or in some cases income investments (for profit organisations). Non-maintained schools are normally run by not-for-profit charities, approved by the secretary of state to take children with statements of SEN.

So, What must a Special Free School Provide & how must it be run?

  • Provide education for children assessed as needing statements of SEN between the ages of 5-19 years of age.
  • Provide education to a minimum of 5 children
  • Only teach children with SEN or those being assessed as having SEN
  • Have regard to the SEN Code of Practice
  • Provide a curriculum that is one tailored to an individuals needs
  • Run by an acedemy trust (Charitable trust/not for profit)

Admissions to Special Free Schools will continue to be made via the LEA who retain responsibility for assessing a childs SEN

Important factors…

Applications must only be made by those schools that are new (meaning ones not already funded by the state as already mentioned above)

So… Who can set up a Special Free School?

Well, I should really rephrase the above question to, “Who can apply to set up a Special Free School?” Because the answer is just about anybody can, but this doesn’t mean to say your application will be approved.

This isn’t just a case of knowing that there is a gap in SEN provision (though it helps) groups of parents, charity groups etc,will struggle unless they have a member of their group who has strong knowledge of the education system (basically how to run a school on a senior level) Head teachers and board of governors make a good starting block. From what I have heard, many parent groups have formed wanting to start Special Free Schools but due to their lack of knowledge on the running of a school (including costs) they have therefore fallen at the first hurdle. This isn’t just a case of coming together, forming a group and filling in an application.

Parents/groups/charity groups looking to apply to open Special Free Schools need to do their homework and should realise this isn’t the only option (setting up fully independent schools may be a better, if not slightly easier, process). To set up a Special Free School, groups should appoint a director(s) and as mentioned, preferably someone who has some inside senior knowledge on the running of a school and importantly the likely cost that comes with it.

Writing the bid is also a far from easy task, this normally exceeds a 100 pages and no stone should be left unturned! Only then is there a chance you will make it to the “Interview Stage” The Governement has set up the New Schools Network which is there to help groups throughout the process and should really be your first port of call.
Understandably, given the state of the SEN system at present (the fact that there just aren’t enough special schools in most areas and there are huge gaps in provision) many groups, especially those consisting of parents of children diagnosed with SEN, will be looking into Special Free Schools. However, I feel that when looking more closely, they may well discover things are much more complicated then identifying the need for a school, finding a site and opening one. I’m not saying people assume its easy, just that it seems much harder than I first thought, plus it may not be all its cracked up to be (just read on to see where I’m going with this.)

So, what about existing independent schools? WOuld it be beneficial for them to apply for SFS status? It sounds so considering these will continue to be ran independently yet receive state funding to do so! What’s the catch? Of course like everything there is one!

Special schools that are already setup and established will not be provided with the start-up funding However, there are some exceptions, such as expanding pupil capacity -but there are still no guarantees.

The next big factor is admissions. Once Special Free School status is granted to those independent schools, the LEA will have the right to make them take children with varying needs, even ones the school does not cater for. Therefore this means that independent schools that for example only provide education for children on the autism spectrum, will have to take children with other needs, social, emotional, more complexed SEN or varying disabilities. For me, this is a massive issue, one that would make me consider such a change much more carefully if I was making such a decision about an independent school.

My son is in an independent special school just for children with autism and Asperger’s. The school teaches in small groups and have a high pupil-teacher ratio. I would honestly worry if it was to convert to that of Special Free School status. I’m not being selfish, I just feel that by admitting children outside this status of SEN may result in all children not having their needs met, not mentioning the school reaching over-capacity. I also worry that dependent on how many independent schools within my postcode convert to Special Free School Status, the local LEA may try to move my child in order to save money (his at an independent out-of-borough school).

So… with the bad points out of the way, are there any good ones? The only ones I can actually think of is that of the reduction in tribunal cases. It’s quite simple really…if independent special schools convert to Special Free Schools, then the number of parents bringing cases to the SEN tribunal will fall. LEAs will be much more willing to send a child to the school as it won’t be charging the independent fees it once was. This would also mean that more children would possibly be educated within their borough. For me, neither outweigh the issue of admissions (this for me just creates worry).

Whoever you are, if a Special Free School is something you are seriously considering, there are important issues to consider. One of the biggest is that of the pending SEN reforms. With the future of SEN provision still up in the air, is now the right time to be making such huge decisions? The Green Paper will mean a complete SEN overhaul. This includes the scrapping of the SEN Statement and replacement with the Education, Health and Care plan taking its place. Other factors include everything from the way a child with SEN is assessed, the funding a school will receive and the possibility of a personal budget. We don’t even know what the new EHCP will look like and if the social care part will hold any legal and statutory duty whatsoever.

Can’t this government do one thing at a time? It makes no sense to me to open Special Free schools when the way such children are provided for remains so unclear.

Okay, so heres the nitty gritty on the issue of Special Free School funding:
As far as I can make out, there is no set capital – this is therefore allocated on a project by project basis. The secretary of state must take into account the estimated or “potential” costs of each individual group’s bid. As already stated, there is no start up funding for existing schools, only new schools (special circumstances will be given consideration.)

Do your homework, this is a government-funded scheme which will mean that they want to see low costs and good value for money!
Remember, the government is still consulting on long term funding for special schools. As it stands, the interim funding arrangements put in place is to receive base-funding level funding of £10k per place (note there may be additional funding from some LEAs dependent on an individual’s needs. Well, let’s be honest, 10k isn’t much, especially for a child with complex needs who requires a number of high-level provisions put in place like SLT and OT.

Lastly, Special Free Schools, like other free schools, should receive a standard grant to compensate for services that state maintained schools recive from the LA.

If considering a Special Free School, remember these only cater for children aged 5-19. This is regardless of the pending EHCP, which covers children aged 0-25.

So, there you have it! I hope I didn’t confuse you!

Thanks to Tania  at Special Needs Jungle for asking me to attend the New Schools Network forum which enabled me to write this report. Please visit the New Schools Network for detailed information and advice on Special Free Schools and Free Schools

Claire Louise (A boy With Asperger’s)

I’m up for most inspiring blog in the Mad blog Awards 2012
Please vote for me (A boy with Aspergers) at http://www.the-mads.com/vote.htm

Find me on twitter @clairelouise82

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/

Helping your special needs child – a mother’s story

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

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Hi everyone.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Addressing the special needs post-19 provision problem

Provision for young people with special needs after they leave school is a big issue for many parents. Although technically adults, many young people with learning disabilities are far from ready to join the world at large.

A project in Surrey has just been launched to try to fill that gap for some. Project Post 19 was conceived two years ago by Robert Power, an Outreach Teacher who has worked in the special needs sector for over 15 years. Rob works closely with school staff to help students with diverse learning difficulties to achieve their goals in mainstream schools.

From September 2012, Post 19 will be offering a Community Learning Programme, based in Guildford.  The Programme is aimed at young 18-25 year old adults with any learning difficulties across the spectrum.

Rob started Post 19 when he recognised a gap in the community support framework for adults with learning difficulties. The main objective of the Community Learning Programme is to encourage students to work and participate in their own communities.

Each student has his or her bespoke programme which focuses on the use of centres in their local community for example: the library, leisure centre, pub, post office, bank, corner shop, supermarket, available transportation, cinema and community centre. This active involvement with their own community is vital for improving confidence and communication skills.

The organisation is also working with Young Enterprise to create an inspirational programme specifically designed to offer our young adults the opportunity to create and operate their own start-up businesses.

Post 19 strives to educate not only its students, but the community around them as well. They take part in community education and work together with other community staff to offer a strong support network to all of the young adults. Group sizes are limited to between 8 and 10 and the staffing ratio is 1 to 3, depending on the individual needs.

The project is currently undergoing assessment by Surrey County Council’s Social Services Transition Team and Procurement Team in order to be acknowledged as a preferred supplier. Until that process has been finalised, funding for the Programme is by Direct Payment or Personalised Budgets.

Applications are also being submitted to the Charity Commission and the Care Quality Commission and Post 19 hope to be successful with both by Autumn 2012.

You can find the Post19 website at : http://www.post19.com/

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.

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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.

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.

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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

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.

 

NICE Publishes Guidelines on Autism

New recommendations have been published aimed at improving the diagnosis and treatment of children and young people with autism. NICE, the National Institute for Clinical Excellence says that local autism teams should be set up across the country.

Even though it’s estimated that at least one in a hundred children are diagnosed with autistic spectrum disorder (ASD), NICE says levels of understanding among healthcare professionals varies greatly in the UK. It can be difficult to diagnose children with ASD because of the wide range of signs and symptoms. Up to 70% of those with ASD also have other conditions such as Attention Deficit and Obsessive Compulsive Disorder or an intellectual deficit.

Guidance published today by NICE recommends that local multidisciplinary autism teams are set up to support healthcare professionals and enable them to work together with schools, social care, the voluntary sector and other key services which can offer useful insight into this condition. This is to ensure that children and teenagers with possible ASD, as well as their parents or carers, receive the appropriate care and support they need.

  • Autism teams should lead on the referral and diagnosis of individuals with possible ASD, and should include a paediatrician, a child and adolescent psychiatrist, a speech and language therapist, a clinical or educational psychologist, and an occupational therapist.
  • The autism teams should undertake diagnostic assessments where appropriate, and advise healthcare professionals about referrals.
  • Every autism diagnostic assessment should include an assessment of social and communication skills and behaviours through interaction with and observation of the child or young person, and consideration of any coexisting conditions.
  • A profile of the child’s or young person’s strengths, skills, impairments and needs should be developed during their assessment. With consent, this profile can be shared with those involved in the child’s education to help ensure the assessment will contribute to the child or young person’s individual education plan and needs-based management plan.

Dr Fergus Macbeth, Director of the Centre for Clinical Practice at NICE said: “A correct diagnosis of autism can bring a profound sense of relief to some children and young people from what can be an intense feeling of isolation from the rest of the world.

“It can also help them and their families or carers to get support from education, health services and voluntary organisations and make contact with others with similar experiences.”

This is the first of three NICE guidelines to focus on this condition. NICE will be publishing further guidance on the management of autism in children and young people, and on autism in adults. To help put this guidance into practice, NICE has produced a range of support tools, including signs and symptoms tables for children of preschool age, primary school age and secondary school age.

The National Autistic Society has welcomed the guidance saying these “vital” recommendations should bring about a far more consistent approach to referral and diagnosis, and mean more children getting quicker access to necessary support services.

Mark Lever, NAS Chief Executive, said: “We hear all too often from parents who have been pushed from pillar to post trying to get a diagnosis for their child, and even once their child is diagnosed a further battle to get the right post-diagnosis support. In a recent NAS survey, 68% of parents we spoke to said it had not been easy to get support for their child. Lack of appropriate support can have an extremely detrimental affect on the family as a whole, and lead to more costly services and support being required further down the line.

“The NICE guidelines offer a clear cut process for families in terms of diagnosis and early support and we urge local authorities to implement these recommendations as soon as possible to prevent more children and their families struggling unnecessarily. It is important to point out however, that diagnosis is just the beginning of the journey for people with autism, and in addition to the NICE guidelines we further welcome the proposed NICE Quality Standards, which define best practice across health and social care, giving both children and adults with autism vital information to get the
support and services they need. With the right support at the right time, people with autism can lead happy and fulfilling lives.”

You can read the guidance in full at this link: http://www.nice.org.uk/CG128

The Misunderstood Child – by Kathy Winters

This wonderful poem has been around for a while but I thought it might strike a chord with some of you so I thought I would share it here.

The Misunderstood Child
A poem about children with hidden disabilities

by Kathy Winters

I am the child that looks healthy and fine.
I was born with ten fingers and toes.
But something is different, somewhere in my mind,
And what it is, nobody knows.

I am the child that struggles in school,
Though they say that I’m perfectly smart.
They tell me I’m lazy — can learn if I try —
But I don’t seem to know where to start.

I am the child that won’t wear the clothes
Which hurt me or bother my feet.
I dread sudden noises, can’t handle most smells,
And tastes — there are few foods I’ll eat.

I am the child that can’t catch the ball
And runs with an awkward gait.
I am the one chosen last on the team
And I cringe as I stand there and wait.

I am the child with whom no one will play —
The one that gets bullied and teased.
I try to fit in and I want to be liked,
But nothing I do seems to please.

I am the child that tantrums and freaks
Over things that seem petty and trite.
You’ll never know how I panic inside,
When I’m lost in my anger and fright.

I am the child that fidgets and squirms
Though I’m told to sit still and be good.
Do you think that I choose to be out of control?
Don’t you know that I would if I could?

I am the child with the broken heart
Though I act like I don’t really care.
Perhaps there’s a reason God made me this way —
Some message he sent me to share.

For I am the child that needs to be loved
And accepted and valued too.
I am the child that is misunderstood.
I am different – but look just like you.

The Right Support Gets Results

Clare’s son was written off as lazy by teachers as a child. Severely Dyslexic and Dyspraxic, he faced an uphill battle in learning to read and write, let alone trying to succeed at French lessons alongside his peers in mainstream state school.

At school he was bullied by other pupils, segregated in food technology lessons because of allergies and given detentions because working memory problems meant he could not remember to bring everything he needed to class.

Clare said: “I was told by a Teacher at my Son’s School when he was six years old and she didn’t believe he was dyslexic , she said, he will never be an Einstein” I looked at her straight in the eyes and said “Do you realise Einstein was Dyslexic?” the look on her face was a picture, as though she wanted the floor to swallow her up”

Clare was determined that her son should get the support he needed that was not available at his school near Camberley. She fought Hampshire County Council for more than two years until they were forced by a Special Needs Tribunal to fund Michael at a specialist school that could help him achieve his potential.

This month, after much hard work, Clare’s son was ecstatic to learn he had scored an A in GCSE English that he sat before Christmas. Clare believes it’s a direct result of him getting the support he needed to overcome his problems:

“How amazing! It  just shows if a Dyslexic person is taught properly they can be amazing at English. I’m so proud of him.”

Even though the process of getting the support in place made Clare ill, she now helps other parents who are struggling with the Special Educational Needs System to get their children the help they need so they have the opportunity to do as well as her own son.