The Brain Injury Hub – a brilliant resource

As part of Family Voice Surrey, I have visited The Children’s Trust in Tadworth a number of times as they kindly lend us a room for our meetings.

The Children’s Trust is a national charity working with children with acquired brain injury, multiple disabilities and complex health needs. They have a 24 acre site in Surrey, but offer their services to children from across the UK. Their staff are dedicated experts in rehabilitation and support work.

An acquired brain injury may be very obvious to see when it is profound and accompanied by physical difficulties, or it may be an ‘invisible disability’ that may have stemmed from a long-ago trauma or illness, that is not diagnosed for years, leaving a child with no support. The Children’s Trust helps those who need intensive levels of care but they realise that they have considerable expertise they can share at a wider level and so have developed a new online resource to do just that. Here, Ian Ray of The Children’s Trust explains all about it:

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copyright The Children's Trust

Courtesy The Children’s Trust

The suddenness of acquired brain injury can mean a child’s family life, their schooling and their relationships with their friends can be utterly changed overnight. One parent told me it was a little like shaking a snowglobe but having no idea when the flakes will begin to settle down.

It was the shock associated with acquired brain injury that we wanted to address with our new resource www.braininjuryhub.co.uk

Parents told us that in those early days in hospital, they didn’t necessarily want to know about all the complexities that may arise over the coming years – they simply needed to get by on a day-by-day basis.  Later on in the recovery process, it seemed that parents wanted to know more as their own insight deepened, and so we developed the Brain Injury Hub as an attempt to mirror the ‘journey’ parents told us about.

Visitors to the site are first asked who they are, and are then taken to a page that asks them where they are in this journey. Are they in hospital? Perhaps their child is back in education, or making their first steps into the world of work. Our hope is that we’ve presented our information in a way that gives parents and carers the information they need within just a few clicks.

The feedback we’ve had following our launch in May has been fantastic, but for all our efforts to create a resource of clinically-evidenced information, it is the real-life stories that our readers gravitate towards.  After all, it is the parents who have actually experienced caring for a child with an acquired brain injury who are the genuine experts. We’ve already seen some incredible stories shared.

On a personal level, I’ve been astounded by the capacity of these parents to cope with these enormous changes to their lives with optimism, humour and dignity. I hope over time we will see more of them sharing their stories on our site. Do get in touch at hub@thechildrenstrust.org.uk if you’d like to share yours. Other families have offered mutual support on our forums, and it has been immensely rewarding for us to see parents taking care of each other and offering advice in this way. http://www.braininjuryhub.co.uk/forum/

copyright The Children's Trust

Courtesy The Children’s Trust

We’ve also included some information for teachers on the site, in the hope that this will help what can sometimes be a difficult transition back to school. This part of the site has exceeded our expectations, with thousands of teachers already logging on to find out more about acquired brain injury.  Some have signed up for our quarterly newsletter, which has been very encouraging.

Building a resource around such a complicated condition has been incredibly challenging at times, but the project has been very well supported by the clinical staff who’ve shared their knowledge, and the parents who’ve given their time to make it as good as it can be.  We’ve had visitors from all over the world, perhaps pointing to the fact that families face some of the same difficulties, whether they’re in Portland, Oregon or Port Talbot.

So do have a look at the site when you have a moment. It’s by no means finished, and we’d like to see the site continue to develop in response to what our visitors want to see.  Over the coming months, we’ll be adding some video content to the site, and some improvements to our community space.

If there’s anything you’d like to see on the site, then do drop us a line at: hub@thechildrenstrust.org.uk

 

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

 

This is a post from Claire Louise from A Boy With Asperger’s. I met Claire at the BritMums Awards earlier this year and we got on really well.
What I love about her special needs posts is the honesty, the love and the frustration that we all feel with our little darlings that she expresses so well.
So, just in case you haven’t seen this already, I thought I’d reblog it here. Have a great weekend
Tania

A boy with Asperger's

Wow… Little man is driving me crackers. This evening his done nothing but talk about wrestling to the point I’m almost smacking my own head against the wall!

His overly obsessed now, I truly never thought anything could come as close as his transport obsession! Obviously I was wrong.

The worst part is how his interest in wrestling is keeping him awake at night again. His back using the melatonin but as usual its not providing much relief. Worse still school inform me that his acting very out of character. It’s been reported that his been saying pretty bizarre stuff like “He would be more popular if he went to prison” this was said as he was asked why he was misbehaving… Another one of his answers was “He gets more respect and makes more friends this way!”

School enquired if it was his medication that could be causing such…

View original post 555 more words

SEN Reforms: professional views to the select committee

The Education Select Committee yesterday heard from various witnesses about the draft legislation on Special Education Needs.

Over two and a half hours, professionals gave their views about the draft bill. In this first of two sessions of oral evidence, the Committee heard from local authorities, health, SEN organisations, educational institutions and OFSTED.

A snapshot of the SEN select committee hearing

One of the major concerns that was voices by the professionals throughout the hearing, which I watched online, was the lack of statutory duty on health to ensure that they provide for the needs of children who will have an EHC Plan, even though that came with complexities and difficulties.

Peter Gray from the Special Needs Consultancy said there was an issue for parents around the fact that a single agency (the local authority) would have to enforce commitments from another agency without the authority to see it through and so any agency named to provide for a child’s needs should be duty-bound to do that.

Another issue that was generally agreed upon among the witnesses surrounded the ‘local offer’. Most believed that any local offer should be framed around a national framework to avoid the potential for post-code lotteries. This could be, for example, a national offer with a quality framework and local variation. This would mean that there would be a consistency of provision for every child with SEN, wherever they are in the country, whether or not they have an EHC plan.

It was noted that the local offer was not individualised and it need to be made clearer what was required – was it a directory of services? Would there be parental entitlement or  expected pathways and would it properly include schools and be inspected by OFSTED?

Christine Terrey, Executive Headteacher of Grays school and Southdown Junior school, said that many schools had no idea what would be required of them for a local offer and had no idea of what to put in it. Another witness said they believed that if parents knew what was available by law locally, they would have less need to pursue a ‘piece of paper’.

A third main theme was whether there should be a delay in the legislation – something I believe should happen. Kathryn Boulton of Blackpool’s Children’s Services (which is not a pathfinder authority) said she believed that there had not been sufficient time and many pathfinders are still in the recruiting phases – which I know to be true. She also said there was a lack of clarity about how personal budgets should work and that the learning from the pathfinders should be allowed to develop to allow the bill to be properly informed.

Jo Webber, of the NHS Confederation explained that the new Clinical Commissioning Groups (CCGs) should, in the main, be authorised by next April, but under the new system, provision for a child with severe or complex needs or a physical condition would need commissioning from up to eight different parts of the NHS. There was, she said, a need to seek more clarity, which would take time.

Dr Charles Palmer, from the CYP service in Leicestershire said he believed there should be a delay because expectations of great improvements to the system have been raised among parents’ groups and there is a real danger that with the budget restrictions those expectations simply would not be met. He said that in his local authority they were already restricting the range of children and young people who were being supported through the process so that they would have enough money to help the most needy children.

Another issue that was highlighted was how to proceed with the reforms, taking into consideration that delegated funding for schools was already in existence and couldn’t be clawed back because of the minimum funding guarantee. Kathryn Boulton said that funding was not aligned and uncoupling delegated funding was going to be very complicated and could lead to variances across the country. Because of the Minimum Funding Guarantee it might not be doable.

One point – very close to my own heart – was the provision of mental health services from CAMHS. As I have written before, there is a very long wait to access even an initial appointment from CAMHS, let alone the appropriate follow up care. Kathryn Brown said that the bill should include a specific reference regarding mental health services in the overarching mental health provision. She noted that mental health needs very often run alongside complex SEN and there should be a requirement for mental health provision to be outlined clearly.

Regarding the draft bill proposal for compulsory mediation, a question was raised about lack of a mechanism to provide arbitration between health and education. Peter Gray believed there should be joint accountability between health and education and a duty to cooperate.

In his evidence, Dr Charles Palmer, said he did not believe mediation should be compulsory, while Brian Gale of the National Deaf Children’s Society said that if mediation was mandatory then it made no sense that there was no statutory obligation on health to provide or to mediate and without this, there would be no improvement.

On the issue of transition, there were concerns about coordination, in that adult services do not mesh with those for children and young people regarding the ages at which services stop. Jo Webber said the extension of an EHCP up to the age of to 25 would have an impact on health service provision and costs. Peter Gray said these costs, which included admin, monitoring, provision and review costs should not be underestimated.

The reforms also raised the question, said Kathryn Brown of the costs on local authorities of moving from old to new system and great thought needed to be put into resources and capacity. Would children and young people with a statement be automatically moved to an EHCP and would people post-19 but under 25 who had ceased an educational statement need to be reassessed. The draft bill provisions do not have this clarity and the time and mechanics needed should not be underestimated.

It has been my personal understanding during our pathfinder that children with statements would be left until there was a reassessment need at a review or a transition point was reached, but this is not clearly stated in the bill.

Kathryn Brown also believed that an EHCP should be maintained for a vulnerable Post-16 young person even if they leave education, if they enter an apprenticeship or if they go into custody. The latter should be needed for safeguarding reasons.

Dr Palmer said that the timetable for an EHCP should be linked to that of NHS waiting times – 18 weeks, instead of as at present, six months from referral to statement. Additionally, through the commissioning process there should be clear children’s leads from NHS commission, through local area teams and to clinical commissioning groups to ensure that children had a clear voice at each level.

One vital issue that was raised is that of the SEN Code of Practice, a significant document for schools and parents alike. The CoP will need to be revised or completely rewritten to come into line with the new reforms but, at present, it was noted that there is not duty for t to undergo parliamentary scrutiny and this was unacceptable. Brian Gale said that the new CoP needed to be right from the start – you couldn’t risk loose ends and then find that for the first cohort of children it didn’t work, thus jeapordising their provision and having to fix the new CoP retrospectively.

Mr Gale also related that in his experience, parents do not believe the bill will make much difference because services are being cut every day and it is very difficult to convince them that against this backdrop, there will be an improvement.

He also noted that when it came to a review of a plan, it seemed that only providers were consulted and not the child or the parents and looking at issue of funding – everything is being discussed by the Schools Forum where there is no representation from parents or young people.

Regarding the definitions for SEN, Philipa Stobbs of the SEC/Council for Disabled Children, said they would like the term ‘disabled’ to be clearly included in the definition of Special Needs for an EHCP, as some children with disabilities do not need special educational provision. Any new definition must improve the professional decision-making process for when a child has SEN because at the moment, the definition was too narrow.

Other points raised included:

  • A statement used the term ‘specify’ while the draft bill, at the moment, used the term ‘sets out’ which will only give rise to wooly EHCPs.
  • An EHCP should have broad outcomes and specific objectives, for example age appropriate language, ability to eat independently.
  • Where the green paper had a broader vision, the draft bill did not deliver on that
  • There was a concern that some children with a ‘Band A’ statement would not qualify for an EHCP but there was a belief that all children with current statements should automatically do so.

I hope that in the next session there will be strong input from parents themselves. It is, I believe, scheduled for 6th November. You can watch the whole of the first session here: http://www.parliamentlive.tv/Main/Player.aspx?meetingId=11597

 

Beech Lodge: A new school offering a practical approach to learning

For some children, a mainstream school setting can be overwhelming, particularly if they have learning difficulties such as dyslexia, dyscalculia or find it otherwise difficult to learn in the same way as the majority of children.

However, there are very few schools that are set up for children like this for whom a specialist environment is needed.

Daniela Szmigielska and Emma Barklem from Berkshire decided to tackle this to help their own children and others like them by starting their own school.

Opening in January 2013 in Hurley, Berkshire, Beech Lodge School will be a new small independent co-educational day school for children between the ages of 7 and 16+ whose particular needs may not be fulfilled in a mainstream setting and who may not warrant a special school place.

The school building at Top Farm is a newly converted barn in a rural setting which is currently being completely refurbished. It will provide the classroom, assembly and office space suitable for a small number of children, including a garden and for playing and working in, as well as nearby access to woodland and sports facilities.

Beech Lodge will offer an innovative and hands-on approach to education for those children who require an individually tailored learning environment to build social and life skills, have access to therapeutic and specialist interventions and above all the educational tools with which to achieve their greatest potential. Founded by some of Berkshire’s most inspiring teachers and a group of concerned and active parents, Beech Lodge’s aim is to provide a supportive and structured environment enabling those children to thrive rather than just survive at school.

Daniela said, “All children are different and learn and behave in different ways. Beech Lodge will consider the whole child addressing their individual emotional, social, physical and academic needs. We aim to use  variety of teaching strategies and techniques to keep them on task, build self esteem and give them the practical skills for later life. The curriculum puts an emphasis on children developing skills in Literacy and Numeracy with cross curricular links across subjects. Special importance is also placed on outdoor and practical learning, cooking, art, music, drama and physical exercise.”

Beech Lodge will accept children who would benefit from a high teacher/pupil ratio and small class sizes. They may require specialist teaching for dyslexia and dyscalculia as well as access to therapeutic interventions such as SLT, OT and Attachment therapy. These may be children who have restricted coping skills and low self esteem due to a range of difficulties including mild to moderate learning difficulties, social and emotional difficulties, sensory processing issues and missed opportunities at school.

It will be a school for children with ability and talent but for whom mainstream education is overwhelming. A school that recognises not only how vulnerable but also how precious those children are.

For more information see our website www.beechlodgeschool.co.uk, call 01628 501722 or email info@beechlodgeschool.co.uk

Parents on the Warpath…and other stories

It’s been a difficult week for many parents at our school, who have discovered that our LA doesn’t want to pay our statemented sons’ school fees, because there has been a lower-than-inflation fee rise after several years of a freeze.

I do wonder what the council would think if we all declined to pay our council tax because of an increase. Nope, county council, I think you’ve asked for too much this year, so please re-invoice me for a lower amount and I’ll consider it.

This is despite them paying the full (increased) fee for new statemented boys. Bonkers, eh?

Methinks someone a) hasn’t quite understood the existing legislation and/or b) is such an difficult character (this is polite speak)  that no one else in the department has had the courage to whisper that it’s sshh *actually illegal* and s/he’s bringing the authority into disrepute in the eyes of more right-thinking colleagues, parents, headteachers and.. oo, probably the Department for Education. Especially if they read it here. Who knows?

To say we’re all angry and distressed is a very large understatement. I did write to the LA earlier in the week, and am still awaiting a response. I’m not a very patient person, but more patient than some parents who’ve already written to their MPs to voice their complaints. Quite right too.

I’ll be doing the same next week (and maybe even speaking to my excellent contacts in the local press and regional TV), unless our esteemed headmaster finishes half-term on Thursday afternoon holding a nice cheque for the right amount and not a penny less. The press love stories like this, though – I should know, having been a journalist for quite a long time.

Really, don’t mess with special needs parents and most certainly DON’T mess with their children’s education that they’ve fought hard to secure. They’ve been through statementing and come out the other side still standing (just about). Do you think they’re going to let this slide? I think not. You only have to read our Facebook Group to know that.

If you’ve been in a similar situation, do let me know.

On to some great stories from the week:

Stop the DLA Takeaway campaign – your help needed

Stop the DLA Takeaway campaign – Contact a Family and The Children’s Trust need your help

The Children’s Trust, Tadworth and Contact a Family would like to hear from parents and carers of children who spend long periods in hospital. The charities are asking families to fill out a short survey which could provide vital information to strengthen their “Stop the DLA Takeaway” campaign.

Link to survey: https://www.surveymonkey.com/s/StoptheDLATakeaway2012

The Stop the DLA Takeaway campaign highlights that disabled children who spend long periods in hospital are at risk of having their Disability Living Allowance (DLA) suspended. Current regulations mean DLA payments are suspended if a child’s hospital stay is more than 84 days. The days do not have to be consecutive, so hundreds of severely disabled and sick children, who are regularly in and out of hospital, could be affected.

The Government argues that when a child spends longer than 84 days in hospital ‘a patient’s needs are fully met free of charge’. However, Contact a Family and The Children’s Trust hear from families that they provide the same or more care when their child is in hospital and incur extra costs such as loss of earnings, travel to and from hospital, parking and childcare expenses.

If you are the parent or carer of a child who has spent a long time in hospital you can complete the short survey here: https://www.surveymonkey.com/s/StoptheDLATakeaway2012

This information could help Contact a Family and The Children’s Trust strengthen their call for the Government to scrap the rules that deny some of the UK’s most severely disabled children financial help when they need it most.

For more information visit the Children’s Trust website.

Latest information and advice for families

Contact a Family’s latest updated parent guides include:

Parents can order free hard copies of Contact a Family’s printed guides by calling our helpline on 0808 808 3555.

When SEN Tribunal looms, seek legal advice

Many parents find themselves in the position, as they try to secure a statement for their child with special needs, of having to go to Tribunal when they cannot reach an agreement with their local authority about provision. This is, always, a very stressful situation.

It’s hoped that the new reforms that are now being discussed will prevent much of this – or at least that’s the intention. Without substantial improvements to the draft bill however, many believe it will do nothing of the sort.

It is always recommended that you do not represent yourself at Tribunal, even if you are legally qualified to do so. This is because it is very difficult to remain detached when the future of your child is being discussed when this is a situation to which  you are extremely emotionally attached.

There are several avenues you can go down. As well as IPSEA, SOS!SEN and the NAS Advocacy Service, there are various SEN Advocates, some of whom work pro bono. You may also decide to engage the services of a solicitor – there is a list on this page.

Additionally, due to the recent changes in the law, barristers can now accept instructions from parents (and local Authorities) directly. This is called Direct Access and more information is on the Bar Council website, however, it is not possible for those on legal aid, though they can still have their case in part funded. This is particularly welcome as the costs are no longer duplicated.

One such barrister is Gulshanah Choudhuri, who works throughout England. I recently met Gulshanah and was very impressed by her compassion and quiet determination with which she pursues the best solution for her clients. She has a very personal reason for working in the field of SEN law – a mother of two, she has a daughter with Downs Syndrome and so has an intimate knowledge of what it is like to live with a child with additional needs.

While working in criminal law, she found herself often asked for legal SEN advice to parents at the school gates.

Gulshanah says, “I became very interested in SEN law while I was practising as a family and criminal barrister, that I began to question why not just do SEN law? So I did and instead of giving free legal advice at the school gates I set up my own chambers www.senbarristers.co.uk and have never looked back. I always remember my parents saying good things come when you follow your passion, and they have. Not only am I helping parents to secure what is rightfully their children’s education but I am following my passion. If I could I would have done SEN law when I qualified!”

Gulshanah has worked as a pro bono legal adviser for IPSEA in the past, and has been able to help many parents get the help their child needs, offering mediation as well as representation at Tribunals.

She says, “One client I advised came to me with an appeal to the Upper Tribunal and upon having a one hour conference with him, it soon became apparent that what he needed was to urgently amend the grounds of appeal to one of Judicial Review. The Upper Tribunal have accepted and he will now be doing the hearing himself, with me supporting him. Parents can use a barrister such as myself for all sorts of issues relating to SEN, such as a school excluding children with SEN on a school trip.”

It has always seemed to me a disgrace that parents have to seek legal redress at all when we are talking about the needs of a vulnerable child, but sadly, this is all too often the case. If you find yourself in this position, have reached a stalemate with the local authority and feel you need to seek legal advice, do your research, check out the list I have compiled, which is by no means definitive.

I must stress I have no personal experience of their services, apart from having consulted Douglas Silas who gave me good advice and my personal knowledge of Gulshanah, whom I like very much, and who would be my first port of call should I ever need SEN legal help. However, the page does include some honest recommendations from parents.

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

Silent Sunday .. For all Parents of special needs kids

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The Special Needs Jungle Story Selection

The Special Needs Jungle weekly news review is back! It was supposed to be away for just a week while I was in Sweden but last Friday I was just too tired to even think about it. The conference was fantastic – so good to connect so many people from across Europe who are all affected by limb deficiency and who are all trying to improve the lives of other people with similar conditions.
This past week, I’ve been working hard on our Family Voice Surrey response to the Education Select Committee’s call for responses to the draft SEN bill. Having seen a number of other responses, there is a wide range of opinion for the committee to consider and I hope it takes note of everything.
This week’s stories that I’ve found include an array of great blog articles – if I’ve missed yours, just leave it in the comments.

One of the comments we hear a lot at Netbuddy is ‘Why does everything for people with special needs cost so much?’ Everything from toys to adaptations – it all seems to come with a hefty price tag. In these strap-cashed days, it’s even more galling for parents to have to fork out more.

Today is the deadline for the Education Select Committee’s call  for responses to the draft SEN bill.

Following the evidence of home educators in September, the Committee will hear the views of local authorities and from the newly-appointed Parliamentary Under Secretary at the Department of Education, Elizabeth Truss MP, who has taken over the home education brief.

Today I’m feeling a little sad. Son2 is off school again with joint pains in his legs. We’ve just been for a blood test and he is awaiting an appointment later this month with a specialist in London

Emma’s story of Fetal anti-convulsant Syndrome

“Why do you bother speaking out/attending meetings/creating surveys (delete as appropriate), nothing ever changes”. I hear this all the time, not from practitioners but from other parents.  Some parents know me well enough to know I am not the type of person who can just accept things and some know that I am in my element when facing a challenge.

I am grateful for ..I was very excited to see this prompt because I like being able to sit and think about the good points on life.  It is very easy to see the negatives in things, especially when you have incidents occur like we did this week.  It is easy to let frustration drain you.  To make you question your faith in fairness.

Today I attended the “Managing Difficult situations” training workshop provided free for Parent Forums via Contact a Family.

A few days ago I fell asleep on the landing. I was waiting for my son to go to sleep.  He is not 1, he is 11, but he tells me that he is too afraid to go to sleep on his own.  That’s Asperger’s for you.

In the largest study yet examining proposed changes to the autism diagnosis, researchers say far fewer people would be cut from the spectrum than previous studies have suggested.

 

Deadline day for SEN select committee consultation – some views

Today is the deadline for the Education Select Committee’s call  for responses to the draft SEN bill.

I’ve seen a number of responses so far. Some are concerned about the legal issues raised by the bill, believing that it reduces the statutory protection for special educational needs and children. I have no legal expertise whatsoever and so am not in a position to offer any analysis of this, but from the position of having background knowledge from working within the pathfinder, some of those potential issues highlighted do not seem completely accurate. However, having said that, these opinions are a vital addition to the responses so that the select committee has as wide a range of opinion as possible to consider.

As a parent-carer forum, Family Voice Surrey, for which I am co-chair, has approached our response from our experience as parents of children with SEN and disabilities and from our knowledge of the Surrey/SE7 pathfinder . Our response is broadly similar to other parent-carer forums who have had the same experiences. It would be wrong for us to include any legal issues as that is not our area of expertise and simply parroting the views of others is unnecessary when they can speak for themselves.

Parts of the bill are clumsily worded, so that if you have been working on the pathfinder, you might understand what the intention is, but it has not been stated clearly or in sufficient detail and this is a huge shame. Quite possibly this is an indication of it being put out too soon with insufficient consideration of the fact that SEN is a hugely complex and broad area. This failure has led some to believe that the government is trying to strip away SEN support by the back door. Again, there may be a Mr Burns figure rubbing his hands with glee in the dark corridors of the Treasury at the prospect of saving money on the backs of disabled children, but this is quite a cynical view. Which is not to say it isn’t true.

My co-chair, Angela Kelly, and I recently took part in an interview with SQW who are evaluating the SE7 (South East group of pathfinder authorities) for feedback and we reiterated our view that the reforms will not be what they might if the pace continues as it is. Corners will inevitably be cut with the trials in some areas to meet artificial deadlines and so a thorough testing of the proposals will not have been carried out. And let’s remember who these reforms are supposedly intended for – the stated aim is that they end the adversarial system and benefit children with special needs and their families. It is not, claim the DfE, a cost-cutting exercise in itself.

But SEN is not just about statements, it is about providing the right solutions for children with complex needs, early intervention, transition, personal budgets and more. With the new EHCP, this will also bring in NHS health and psychological support from CAMHS. It is a massive undertaking and even though people are working very hard to try to make this happen, rushing it for political reasons (for what other reason can there be?) is detrimental to getting reform right.

Even the select committee deadline of today is patently ridiculous – some of the questions being asked as simply unanswerable because there simply has not been sufficient time for any trials evidence to be generated, let alone collated.

Some of the issues with the bill include the problem that only education is at present enforceable, so health and social care have no statutory duty of their own to fulfill the requirements set out in an EHCP. Which means it won’t happen. Also, the issue of compulsory mediation before an appeal can be launched is hugely problematic – it will delay the process unacceptably. And if a young person has finished education but still has health and social care needs, would they still have a plan up to the age of 25 in the same way as they probably would if they had educational but not health or social care requirements?

It is, of course, a draft bill and one can only hope that all the submissions made to the select committee are carefully considered and taken on board and the required amendments made. When the results of the pathfinder begin to filter through, further detail can be added to the draft bill. I would hope that whoever is in charge of setting the bill’s deadline would have the courage to say, “Okay, we do need more time. We were aiming for early 2014, but let’s take another six months”. Does that type of courage exist in the DfE? You tell me.

Here is a list of the responses I have come across so far, with links. If you have one you’d like to share, please leave a link in the comments.

As I find more, I will add them here. Read the draft legislation here

Doing your best is all you can do

Today I’m feeling a little sad. Son2 is off school again with joint pains in his legs. We’ve just been for a blood test and he is awaiting an appointment later this month with a specialist in London. I’m pretty sure I know what the diagnosis will be but it hurts to see my 13 year old son in so much pain that he is hobbling around.

Do your best.. even when blowing bubbles

I spoke to our school nurse and, because of his school’s hilly campus, it is likely that we will have to draw up a care plan for him so that, if the pain persists, we find a way for him to attend lessons with as little discomfort as possible. Once a diagnosis is made, I will talk more about the condition as, although classed as a rare disease, it may be much more common than thought.

This has made me realise even more how futile it is to have expectations, high or otherwise, when you have children with special needs. Whenever things are going well and you rest on your laurels, you might think it’s ok to concentrate on other aspects of your life, such as work. This is always a mistake. So it is necessary to concentrate on everything at the same time – to keep your eye on all the balls in the air for whatever you have to do.

This is, inevitably, stressful and, as some have recently discovered, can make you short-tempered with those who do not try as hard as they might. It also means that, occasionally, one of those balls is dropped. For example, I have been so focused on my work and the children that sometimes, my poor husband doesn’t get the attention he deserves when he has supported my new, busier schedule and cheered me on.

I expect a lot from myself, however, and set myself high standards. In practice, this inevitably means I often disappoint myself when I am forced to let someone down. Today, for example, I was supposed to be going to Woking to attend an SEN meeting. However, Son2’s urgent blood test, meant I had to let someone down in order to do something more important. Unavoidable, but it still didn’t make me feel good. Happily, we managed to have the meeting later via a conference call. Then I was supposed to be meeting a new friend when I got a call to say Son1 also wasn’t well and could I collect him at lunchtime? Meeting cancelled.

I have also, up till now, expected a lot from people around me  in terms of people doing their best. I don’t care what anyone’s abilities are, I just care that they try their best, whatever their best is at that moment in time.

Is this unfair? Actually I don’t think so. No one can give their top performance all the time – our energy varies from day to day. But note, I said “their best whatever their best is at that moment in time”. It is something that I really want to impress upon my boys, despite their undoubted and, in Son2’s case, increasing, difficulties.

No one can expect more from you than your best, whatever that may be, but you should give your best at all times even if it isn’t as good as it was yesterday. I mean who wants to be a slacker? I think if you go to your deathbed knowing that you tried your hardest to achieve your goals (whatever they are) and make life better for other people (if you are able to) then you can die happy.

For some this may be achieving great things, for others, the gains may be more modest, but it’s not the size of the achievement that matters, it’s the effort. For people with a learning or physical disability, what may look on the face of it to be a small gain, may indeed have actually been a colossal effort worthy of huge praise.

I am also lucky to be involved with people who do more than is expected, who go the extra mile to do a great job and those who frequently think of others before themselves. These people inspire me to keep on keeping on even when, as today, I want to bury my head under the covers, go to sleep and wake up to find myself living in a fringe universe where the good live long and happy lives, where no one is hungry and where kids are pain-free and universally well-treated.

Maybe in another lifetime.

SNJ on MumsNet – The Paralympic legacy debate

So, here I am, back from Sweden after what was an amazing meeting for people with limb disabilities from 12 different countries. It’s not easy to travel with a disability and especially with a wheelchair but this did not deter them from making their way to Malmo to take part. It was fantastic to get together so many people from far apart who face so many similar challenges. It was possible for them to discuss their own experiences and how they can work together to bring a strong, positive voice for the needs of the limb difference community

Just before I went, I was asked by MumsNet to submit a debate piece about the legacy of the Paralympics against the Equalities Minister, Maria Miller. This I was delighted to do and, this afternoon, it is published here http://www.mumsnet.com/bloggers/paralympics-legacy-debate.

Ms Miller’s piece is about the positive influence the games have had, whereas mine is a little darker. The games were great – inspirational, a great spectacle – but their legacy?

Well, you can read both points of view here and then click the debate link at the bottom to have your say.