Is this ASD research a potential game-changer?

oxytocinThere is new research and findings about causes and potential therapies for autism every week, but the following caught my eye in particular. I’ve reproduced a section below and you can link through for the remainder.

The following article snippet is from Medscape Medical News reporting from the 12th Annual International Meeting for Autism Research (IMFAR)

 

The research has found that intranasal oxytocin appears to normalise fixated or restricted interest, a core deficit in autistic spectrum disorder (ASD).

This expands the spectrum of normalising effects now being reported for intranasal oxytocin, essentially “completing the picture” of how the neuropeptide ameliorates the 3 key distinguishing features of ASD.

“In autism, there are 3 basic deficits — social communication, repetitive behavior, and fixated or restricted interest, where children get fixated on a particular pattern or sensory stimulation and have difficulty paying attention to other, more socially relevant cues,” Lane Strathearn, MD, PhD, assistant professor of pediatrics, psychiatry and behavioral sciences, Baylor College of Medicine, Houston, Texas, told Medscape Medical News.

“So this is the first time that this particular aspect of autistic behavior has been examined in relation to oxytocin, and we’ve shown that oxytocin has some effect on all 3 aspects of autism behavior, including now fixated interest.”

The study was presented here at the 12th Annual International Meeting for Autism Research (IMFAR).

You can access the rest of this article on Medscape here although you may need to register for free first.

When you’ve read it, do come back here and leave your views – is it just more of the same or do you think this is a potential game-changer?

 

Top Tips for Speech and Language Therapy – Part Two

SpeechblogHere is the second part of top tips for speech and language therapy from Helen & Elizabeth at SpeechBlogUK. If you have any tips that have proved useful, please do share them in the comments!

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Your child’s initial appointment

Your child will probably be seen in a clinic room if they are preschool.  If they are school-aged, they may be seen in school or in clinic – different departments work in different ways.  In a few cases you may get a home visit but these are unusual unless you are seeing an independent therapist.

What to expect

The appointment will probably last around an hour, maybe longer.  If you are in clinic, the therapist is likely to spend a large part of the appointment talking to you about your concerns.  He/she will also play with your child.

If your child is preschool age, they may not do much else and it may look as if they are not doing much.  However, they will be looking at all sorts of things while they are playing, for example, how your child plays, how they communicate, whether they can follow instructions and answer questions, whether they can take turns, how long their attention span is, what they do with the toys…

All of these things will give the therapist useful information about how to help your child.  They will probably like you to join in and interact with your child as well.  Sometimes the SLT may do a more formal “assessment” of your child’s difficulties as well, especially with an older child.  This sounds heavy but will just involve looking at a book full of pictures and asking your child to name things or find particular items.

WARNING:  Your child may not be at their best in the unfamiliar situation, and you may find that your child does not respond to things you are sure that they can do.  If this is the case, tell the therapist.  They will be happy to talk it through with you and work out whether the unfamiliar situation is causing the difficulty or if it’s some other aspect of context that is making the difference.

How to get the most out of your appointment

speechblogboyMake a list of your concerns and take it with you.  You are the person who knows your child best so the therapist will want to hear what you are concerned about (and not) and what you have already done to try and help, if anything.  Think about what you want to convey.  Take with you any other useful information – with a young child, if you have a list of when they did things (crawled, walked etc) in a baby book, you may find it useful to take this with you.

Also, if your child has seen any other professionals (audiology, paediatrician, psychologist etc) take the reports with you.  A school report may be useful to the therapist if you have a school-aged child.  The more information the therapist has, the more likely they are to be able to make an accurate and detailed assessment.   At the end of the appointment, the therapist will give you some feedback about what they have found.

REMEMBER:  If you don’t understand what is being said or the follow-up plan that is suggested, ask.  In all professions, you become immersed in something and it is easy to say something that you think is easy to understand that is confusing to the person you are talking to.  I know the mechanic at the garage certainly does when I take my car in to be fixed!  At all stages, if you are unsure, ask.

What to tell your child

Obviously you will want to tell your child something about where they are going and why.  Keep this low-key.  If your child is quite young, just tell them that you need to go and talk to someone.  He/she will have toys for them to play with, and will probably chat to them too. There is no surer way of ensuring that a child will clam up than telling them that someone is going to listen to how they are talking! You would probably be reluctant to talk too in that situation!  If you have an older child they may be more aware and inquisitive, but still be positive and low-key about it.  Tell them that someone is coming into school to see what some of the children do.  You are one of the children they want to talk to.  They might sit in your classroom and watch for a bit, or they might talk to you on your own and look at some pictures with you.

Follow-up appointments

Similar advice applies for getting the most out of follow-up appointments.  Make a list of what you want to say/ask and take it with you, especially if appointments are infrequent.

WARNING: Be aware that if you have a lot of very specific questions, your therapist may not be able to answer all of them immediately.

If the SLT has given you advice or activities to try, make sure you try the things that have been suggested.  You may start doing the practice and then discover that you are not sure what you are supposed to be doing.  You may run out of ideas to work on a particular thing.  You may have tried for a long time and find that your child is just not making progress.  Talk to your SLT.  Call or email and ask for more ideas or let them know that you are struggling.  Don’t feel that you have to wait until the next appointment, if a brief conversation on the phone would help to clarify something or give fresh ideas.

REMEMBER:  You are the person who knows your child best – make sure you think about what you want to convey each time and what you want to get from the appointment.

Do come and look at our website www.speechbloguk.wordpress.com  for more information as well.  We cover a range of topics for both parents and therapists.  We have several posts with top tips for different topics (first words, generalising sounds, speaking clearly etc), and ideas of things to do, and we’re planning more in the near future.

Top Tips for Speech and Language Therapy – Part One

As is often the case, I come across great resources and services for children with special needs on Twitter. I then cheekily ask them if they’d like to contribute a guest article for Special Needs Jungle and I’m delighted to say, today and tomorrow, we have a two-part article from two Speech and Language Therapists who run SpeechBlogUK.

Helen & Elizabeth have written their top tips when using Speech and Language Therapy services.

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Hi.  We’re Helen and Elizabeth from www.speechbloguk.wordpress.com .

SpeechblogWe’re two speech and language therapists living and working in the south-east of England.  We both have experience of being employed by the NHS and working independently.  We’ve recently started our own blog, and we were thrilled when Tania contacted us about writing a guest post for Special Needs Jungle.  Below is some advice about accessing SLT and making the most of your appointments.

Many children have speech and language problems at some point and this number seems to be rising.  If you have concerns about your child’s development, the most sensible thing to do is seek out a referral to a speech and language therapist.  However, as many of you may be aware, sometimes this can be harder than it sounds.

There are a number of places you can get good, sensible information from, both on development and ideas to help at home.

  • Ican: Ican are the children’s communication charity.  They have some brilliant resources and advice.  They also offer a range of services and support.
  • Afasic Again offer support and advice to parents and have a range of services available.
  • Talking point Has some lovely information and developmental checks and information
  • Mommy Speech Therapy: This is an American blog and has some great advice sheets and ideas

WARNING: be a little careful when searching the Internet. As with all things there is also some misleading information out there.  Try to go to known associations and organisations.

Referrals

pigtail_girlThere are a number of ways to get referred to most NHS speech therapy departments.  There may be local variations but generally:-
– Preschoolers can be referred by a GP, nursery, paediatrician, health visitor OR parents.
– School aged referrals can become a little more complicated. Normally referrals have to come from schools or paediatricians and fewer trusts will accept parental referrals (although it’s always worth trying!). You may also find that your child may need to be referred to other education based services first, before they can be referred on to speech therapy.

You can also access independent speech therapy; however, you have to pay! A few health insurance companies will pay for independent initial assessment, but I have yet to find one that will fund ongoing therapy for developmental issues.

In some circumstances, parents can get help towards the fees from Cerebra.  To ensure the therapist you find is appropriately qualified and insured, use the ASLTIP website www.helpwithtalking.com .  This is the association for independent therapists and, to be a member, you have to prove that you are qualified and keep all memberships/ insurances and skills up to date.  Most independent therapists will happily talk about your concerns over the phone and some offer a free brief consultation – so it’s worth ringing around. You are paying so you want to find someone you can work with.

WARNING. Some schools say they have a speech therapist and they don’t. They may have a TA with some training or some of the local authority education workers who support language, but few mainstream schools have a qualified speech therapist.

REMEMBER: you know your child best.  If you have concerns you should follow up on them, even if it’s just reading up a little.  If you are finding it hard to get your child referred, keep going!

Read the second part of this article on Special Needs Jungle tomorrow.

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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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

 

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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Floortime for Autism winner!

A couple of weeks ago I featured an article about Floortime therapy for autism. See the post here.

We ran a competition for a free ticket and the winner is: Sarah Selby-Bird. Congrats, and I will forward your email to Jake who can arrange the ticket for you!

Floortime posterThe premise of Floortime is that an adult can help a child expand his circles of communication by meeting him at his developmental level and building on his strengths. Therapy is often incorporated into play activities – on the floor.

Join the workshop on the 23rd or the 24th June at Morris Lecture Theatre, St. Bartholomew Hospital London.   Please visit their website at this link for information on research, pricing, and registration.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sensory needs met with a Body Sox

Many children with special needs have sensory issues, including my two. Their school used Body Sox which Son2 absolutely loves. He asked me to source one for him and here he is modelling it. I think it’s him, anyway…

The lifetime legacy of special needs left by meningitis

I recently met the chief executive of The Meningitis Trust, Sue Davie, and heard her talk about the hidden after-effects that meningitis can leave on children who’ve apparently recovered.  The special needs they have due to acquired brain injury are often missed, but in this guest post, she explains how the illness can leave a long-lasting legacy.

Meningitis strikes fast but its impact lasts a lifetime. It’s a disease that can affect anyone, of any age, however children under five are the highest at risk group. People often think about the mortality rates of meningitis (sadly 10% of people will die) and the physical after-effects of the disease, such as limb loss (where septicaemia has occurred), but what few people understand is that 30-40% of children who survive meningitis will be left with other devastating after-effects. Some of these other after-effects can be hidden and may not become apparent until some years after the meningitis, most commonly causing difficulties at school.

c. Meningitis Trust

At the Meningitis Trust, research we commissioned has provided the scientific evidence to back up what we already knew from the thousands of families we have supported over the years. The research compared children who had survived meningitis with those of the same age who had not had it. Many differences were found, including:

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

Effectively, as difficult as it is for a parent to hear, their child may well have been left with what is known as an acquired brain injury (ABI) as a result of the meningitis. And there is little or no understanding or even acknowledgment of the impact of ABI on a child’s education. It is like the silent epidemic – inherent damage that may not be seen for years and is an evolving disability. Whenever special education needs are discussed, rarely if ever does it include the needs of those children who “acquired” difficulties.

An excellent publication, “Educating Children with Acquired Brain Injury” by Beth Wicks and Sue Walker highlights why children with ABI have different special needs including::

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

As the impact of meningitis and ABI generally is not understood by those responsible for identifying need, it’s not a surprise that it goes unsupported:

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

Alongside families, schools are the major providers of rehabilitation for children with ABI and yet the system that is in place lacks the knowledge of what has happened, its impact and how best to meet individual needs.

A report called “Missing Out” was produced in 2001 by the Childrens’ Acquired Brain Injury interest Group. A number of recommendations were made including around ABI awareness and education amongst teachers and educational psychologists. 11 years on and nothing has really changed.

The Meningitis Trust exists to support people affected by meningitis and we are now fighting on behalf of all the children who have survived meningitis to get them the educational support they deserve. Alex, one of our Young Ambassadors who was 8 when he contracted meningitis said “I thought being in a wheelchair was the hardest part – but I was so wrong. I found myself struggling with work that I could do before with my eyes shut” and he also said “It was not my fault I had meningitis – I still deserve an education”. You can read his story at this link in his own words.

And for parents it is a heartbreaking battle – this is what two mums said:

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

Meningitis may be considered a “rare” disease but there are over 20,000 children in the school system who have had meningitis and as many as 40% of these may be struggling. But ABI can be caused by many things and if you consider that every year there are over 500,000 children under 16 in the UK admitted to hospital for head injury, and more than 10% of children can have illnesses that can cause ABI (including meningitis) – it means the number of children potentially struggling in education without the support they need because of an ABI is huge. But the system continues to fail them because the impact is not understood – and that cannot be acceptable.

Children who have had meningitis have already had to fight for their lives – they should not now have to fight for their future. Support our campaign today – just go to www.meningitis-trust.org to sign our petition and see how you can help children like Alex.

Footnote:

Knowing the signs and symptoms can help to save lives and I urge you to ensure you have this knowledge close to hand. You can download our free meningitis app at  www.meningitisapp.co.uk, go to our website  or call our 24 hour freephone helpline (0808 80 10 388) and get a free credit card sized symptoms card. Why don’t you order some for everyone you know, your school/nursery etc. Remember, anyone at any age can get meningitis so everyone needs to remain vigilant. Having our information close to hand saves lives – we know because many people tell us.

If you have been affected by meningitis, you do not need to suffer alone, The Meningitis Trust helps people to move forward, providing free emotional, practical and financial support – just call us on 0808 80 10 388, email us at support@meningitis-trust.org or go to our website www.meningitis-trust.org. Or why not join our Facebook or Twitter

Hyperbaric Oxygen Therapy for children with autism

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

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

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

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

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

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