NICE guidelines for treatment of autism in children and young people published

NICE, The National Institute for Health and Care Excellence, has today published new imageguidelines for the treatment of autism in children and young people. “Autism – the management and support of children and young people on the autism spectrum” has been developed in collaboration with the Social Care Institute for Excellence (SCIE) and is the culmination of a long period of public consultation.

The guideline includes the different ways that health and social care practitioners can provide support, treatment and help for children and young people with autism and their families and carers, from the early years right through to transition into young adulthood at 19. It states key priorities as:

  • Full access to health and social care services, including mental health services, regardless of their intellectual ability or any coexisting diagnosis.
  • Health and social care professionals working with children and young people with autism in any setting should receive training in autism awareness and skills in managing autism. This includes the impact of autism on the young person and their whole family or carers, how to assess risk and how to provide individualised care and support, ensuring a consistent approach across all settings.
  • Making adjustments to the social and physical environment and processes of care. This includes using meaningful visual supports, personal space and sensory sensitivity requirements and arranging appointments at the beginning or end of the day to minimise waiting time.
  • Working with parents, carers and teachers to use play-based strategies aimed at increasing attention, engagement and reciprocal communication in the child or young person. The guidance states that any interventions should be delivered by a trained professional.
  • Understanding enough about the child’s condition to be able to anticipate and prevent challenging behaviour. This includes being aware of sensory difficulties, any mental or physical health issues such as pain or anxiety, co-existing ADHD, communication problems or changes and difficulties at home.
  • Families (including siblings) and carers should be offered an assessment of their own needs, including personal, social and emotional support. Practical support such as short breaks and emergency plans and assistance with planning for future support of the young person.
  • Transition to adult services should inform and include the young person in the planning and, where appropriate, their parents or carers, as well as informing about their right to a social care assessment at age 18. For young people aged 16 or older whose needs are complex or severe, use the care programme approach (CPA) in England, or care and treatment plans in Wales, as an aid to transfer between services.

Research Recommendations

The guidance also made several recommendations for future research for the improvement of autism services.

  • A key worker approach for children and young people with autism and their families should be formally evaluated in a randomised controlled trial.
  • Managing behaviour that challenges in children and young people with autism. A group-based parent training intervention (such as educating parents to identify triggers and patterns of reinforcement) should be evaluated using an RCT.
  • Managing sleep problems in children with autism using sleep hygiene intervention or melatonin in children (aged 4–10 years) with autism.
  • Treating co-morbid anxiety in children and young people with autism to look at the comparative clinical and cost effectiveness of pharmacological and psychosocial (such as Cognitive Behavioural Therapy) interventions for anxiety disorders in children and young people with autism.
  • Teacher-, parent- and peer-mediated psychosocial interventions in pre-school children with autism to investigate if comprehensive early interventions such as the LEAP model, are effective in managing the core symptoms of autism and coexisting difficulties (such as adaptive behaviour and developmental skills) in pre-school children.

What NICE says not to use

The guidelines also state interventions that should not be used, which may prove controversial to some.

These are the use of neurofeedback or of auditory integration training to manage speech and language problems and the use omega-3 fatty acids to manage sleep problems.
The guidelines also state that the use of secretin, chelation or Hyperbaric Oxygen Therapy should not be used to manage autism in any context in children and young people.

The above is just a prėcis of the whole guideline,  that you may wish to read in its entirety, but it gives an overview of what is included. You can find the appendices here What do you think? Are you pleased with the guidance and will they improve services and treatment?

Research links gluten sensitivity to autism

This report is from Medscape Today and is about a study in PL0S One. Links at the bottom.

gluten freeA subset of children with autism have increased immune reactivity to gluten, but the mechanism of this increased reactivity appears to be distinct from that involved with celiac disease, new research shows.

The results also indicated an association between elevated antibodies to gluten proteins and the presence of gastrointestinal (GI) symptoms in the affected children.

“There is evidence that immune system abnormalities are associated with symptoms in a substantial number of individuals with autism,” senior author Armin Alaedini, PhD, assistant professor of medical sciences in the Department of Medicine and the Institute of Human Nutrition at Columbia University Medical Center, New York City, told Medscape Medical News.

“In addition, several studies have evaluated gastrointestinal symptoms and defects in GI barrier function in affected patients. Some have pointed to higher frequency of celiac disease, family history of celiac disease, or elevated antibody to gluten among autistic children, but these studies have been inconsistent about such associations,” Dr. Alaedini said.

Read the rest of the Medscape Today report here (You may need to register for free if the whole content is not immediately visible.)

The study was published online June 18 in PLoS One which is an open access journal.

I know many of you are not surprised by this report – do you follow a gluten free diet with your children? If so, what results have you seen? Leave a comment – we’d love to hear and share your views on this.

 

 

Asperger’s, anxiety, Angels and an African adventure

Tania writes:

Eighteen months ago, Asperger’s Son1 signed up for the trip of a lifetime.

His special(ist) school had joined up with World Challenge to organise a month-long expedition to Tanzania in Southern Africa. Participants would carry out project work in their twin school, Shia school, go on safari but most importantly, climb to the summit of Kilimanjaro.

Kilimanjaro

Destination Kilimanjaro

The school, More House, in Frensham, educates boys from 6-18 who have a variety of learning difficulties. They are bright boys, but may have dyslexia, Asperger’s, dyscalculia, dyspraxia and other similar disabilities and have a different learning style to that in mainstream. The school has a growing Learning Development Centre with an expert OT department.

So, a trip up a 5,895 meter mountain, the highest in Africa, is not going to appeal to every year 10-12 student. Especially the part where they had to raise the £4k plus cost themselves.

But Son1, whose difficulties are social and communication rather than physical (apart from a lifelong tendency to fall over nothing and break stuff just by looking at it) was up for it. He took part in the training and the fundraising and learned valuable skills along the way.

brotherly love

A brotherly farewell

And it hasn’t been only him who has had to learn skills – I have tried (and often failed) at not transferring my own anxiety to him. Anxiety is one of his major difficulties but he has learned to hide it to fit in and so it comes out in other ways, often aimed at us. We have learned to understand this and to breathe deeply and not shout back.

And so, today, 18 months later, the day of departure has arrived.

Top Dad, a former Royal Marine Reserve, has had endless fun “helping” (okay doing) the kit prep. He confessed that for weeks he’s thought it was him going up the mountain and is now devastated to realise he won’t be going himself.

Amber good luck Angel

Amber good luck Angel

So, checklist: Good luck amber angel and laminated angel prayer from (loopy) mum? Check. Immunisations? Check. Epipens for allergies? Check. Passport, visas, paperwork, four season sleeping bag (it’s freezing at the top), walking poles? Check, check, checkety check check.

Me with Son1

Tania with Son1

Tension has been high for the last 24 hours with Son1 answering every parental enquiry with a snappy, tetchy response. Anxiety hovered uneasily over Tirraoro Towers.

He said farewell to Son2, who is at home again, having decided school activity week is boring and not for him, thank you. He is an elegant school refuser. No shouting, no tears, just a polite decline.

kitcheck

Last minute adjustments from Top Dad

Anxiety joined us in the car on the way to school. I got a half hug when we got there, Top Dad was refused one. And then he was gone.

Will I see my amber angel again? Will we see Son1 again? Stay tuned. For those of you who have a spiritual side, here is my Angel prayer for my precious boy.

I  call on you, Archangel Metatron
And as many angels as needed
To protect my son, Luca on his travels
To surround him with protective angelic arms
And keep him from harm
And return him to me safe, healthy and happy
Guide him to get the most from his journey
And to gain in wisdom, compassion and spirituality
Help him to think ahead before he acts
And to keep going when he wants to give up
But most of all to enjoy his time
And know that we are all thinking of him
Thank you.

No change please! ASD Son2 and the hair tong dilemma: Can you decide?

Tania writes:

Yesterday it was my birthday and I was very pleased to receive some wave-making hair tongs to bring a spot of variety to my poker-straight locks.

tania-bday13

The scene of the crime

I gave them a try that evening as we were going out for a family dinner to our favourite Italian (Il Colosseo in Farnborough in case you’re interested). I was pretty pleased with the results and went to show Asperger’s Son2 (almost 14) who was, as usual, ensconced in the Technolair.

He broke off from his laptop for a moment to have a look and I could tell by his face that it wouldn’t be good.

“You look like a Disney Princess,” he said. “I don’t like it.” He gave me a hard glare and turned back to his computer.

I was, actually, rather pleased with looking like a princess, especially given my advanced years – although there is always the danger of looking a bit mutton.

This reminded me of when I (obviously mistakenly) wore some purple crushed velvet leggings- something quite different and unusual for me. Son2 pointed at them and asked, “What is that fiasco? Take them off.”

When I told him I wasn’t going anywhere and no one would see me he replied that he would see me, because, of course, that was all that mattered. I have never worn them again.

Son2, like many children with ASD, finds change very difficult and for him, this is only getting worse as he gets older. It particularly includes anything different about me. As the central person in his life, he likes me to be the same at all times. He also doesn’t like me being away, which can make life difficult.

tania-bday13-2

Don’t mention the hair…

When we got to the restaurant, me still with the dreaded waves intact, I made the mistake of mentioning to my sister-in-law, within Son2’s hearing, that he was unhappy with my Disney Princess look. This, of course, reminded him of his unhappiness and that, coupled with the noise of the restaurant, was too much. He refused to speak or to order any main course or eat any birthday cake and sat plugged into his iPad for most of the rest of the evening.

It was only near the end of the evening, when he pulled up the familiar images on his iPad of his carefully-painted Warhammer figures that he began to relax and managed to have some after-dinner mints.

I could have kicked myself for mentioning the hair when we were at the restaurant. It’s a bit like the Fawlty Towers German/war scene: Don’t mention the hair. I mentioned it once and I think I got away with it.  I got away with it in the house, but alas, the second time meant the evening teetered on the edge of disaster.

I think it illustrates how easy it is to slip up when you’re walking on eggshells most of the time. Life is not normal, even though your kids have no visible sign of disability. I wasn’t thinking about the repercussions of careless talk.

When we got home, I tied my hair back but it wasn’t enough. This morning I went into him with freshly washed and back-to-normal straight hair. He opened his eyes, looked at it and sighed happily. Everything was as it should be.

So what do I do with the hair tongs? Do I keep using them in the hope he’ll just get used to them or pack them away in their box? Help me out and vote below!

Dr Tony Attwood’s views on Asperger’s and girls

Tania writes:

I was recently lucky enough to attend a conference given by both the world-renowned expert in Asperger Syndrome, Dr Tony Attwood and Dr Carol Gray, the inventor of the social story.

Attwood

Tania with Dr Tony Attwood

The conference was organised by Freemantles School, a special school for children with autism spectrum disorders in Surrey. I’m planning to write a post about Dr Gray’s presentation another time, but this post will focus specifically on one of Tony Attwood’s themes: Asperger’s and girls.

Tony Attwood has already written a book about the subject, so if this article piques your interest, you might want to buy the book to delve deeper (link at end of article).

As you know, I have two Aspie sons and have long suspected that I also am an closet Aspie (though my husband would counter that there’s nothing ‘closet’ about it!). After listening to Dr Attwood’s presentation, I could have cried – in so many ways, he was describing me!

It has been generally accepted that the prevalence of Asperger Syndrome in girls is about 1:4 of that found in boys, but Dr Attwood believes this to be more like one girl to every two boys.

The reason for the misconception is because girls with Asperger Syndrome present very differently to boys with the same condition and “fly under the radar of a diagnosis”.

Whereas boys are more often diagnosed in their primary years, for girls it is not until they reach secondary school that the difference becomes more apparent, because girls’ coping and camouflaging mechanisms and their skill at imitating mean that they appear to assimilate with their neurotypical peers.

The route to diagnosis also differs from that of boys and comes more often after a secondary disorder is diagnosed in adolescence such as Anxiety Disorder, depression, Borderline Personality Disorder, an eating disorder (as a method of control) or selective mutism (because they are overwhelmed).

Then, once a detailed developmental history is taken by a clinician, the diagnosis of Asperger’s becomes apparent (if she is lucky enough to have a knowledgable doctor!)

While her peer group moves seamlessly from childhood friendships into teenage talk, conversation and cliques, the Aspie girl finds herself internally cast adrift on a sea of choppy water and hidden whirlpools. She is unable to read the unspoken rules and meaningful glances that are so important to fitting in – though she often manages to cope by copying what the other girls do.

“Sometimes they do it so well that you wouldn’t believe it until the mask falls”, Dr Attwood says. He described the profile of ability in girls as:

  • Observing and trying to understand before the make the first step
  • Reading fiction or watching soaps to learn about inner thoughts and feelings
  • Decoding social situations in doll play and imaginary friends
  • Apologising and appeasing for social mis-steps
  • Being a chameleon

Aspie girls, Dr Attwood said, learn how to adopt a persona for different situations and they have learned to act so well that many affected girls say “They don’t know the real me”. The drawback of this chameleon tendency is that it can lead to depression.

Girls with Asperger’s can suffer intense fear of rejection, particularly surrounding their ability to make, but not keep, friends. They often have one friend who provides guidance and security.

I myself remember the isolation when my one friend was off school and the sheer terror at the thought of approaching other groups of girls, not knowing how to approach them or what to say. Would anyone have guessed that to look at me? Of course not.

And while fitting in at primary might be easier for girls, when they hit adolescence and they find that conforming to social convention goes wrong more often than right, the pendulum, Dr Attwood says, can often swing the other way.

This is sometimes demonstrated by the visible rejection of everything they feel they are not good at, i.e., being one of the in-crowd or the “popular girl cliques” and choosing to wear black clothes, tattooing, piercing, and sometimes, more worryingly, falling into promiscuity or the use of drugs.

For me, this is the girl saying, “You don’t want me? Well I don’t need you either; I can go my own way.” It is a self-preserving decision not to compete against odds stacked against her.

goth girlLinking up with other, similar ‘alternative’ people can bring friendship. Again from my own experience, I had a group of friends when I was 17 and 18 who were all a bit different in their dress and/or attitudes. They were mainly male. The best thing was, they accepted me, were happy to hang around with me and most of all, were not judgemental.

But Dr Attwood explained that social situations also bring other challenges for Aspie girls such as “social exhaustion”. Social interaction and the constant state of alert needed to sustain the “mask” is physically and mentally draining and requires periods of solitude to recover. Likewise they avoid “needy” people, only call people when they have something to say and prefer online communication which is, of course, completely controllable.

If you are the parent of a teenage girl with who has (or who you think may have) Aspergers, it is also important to be aware that they may perceive using their sexuality as a way to be popular, which as we all know (or know now we’re older) is never a good idea and is rarely successful at making female friends.

They are not good at character judgements and so may leave themselves at risk of what Dr Attwood calls “relationship predators”, who can smell vulnerability a mile away.

So what can be done to ensure that girls affected by AS benefit from early diagnosis? Well there is some good news: Dr Attwood has developed a new set of diagnostic criteria that is currently undergoing evaluation and that, when implemented, I believe will revolutionise the field and enable more girls and young women to access the help they need.

For more information about Dr Attwood, you can find his website at http://www.tonyattwood.com.au and his book about Asperger’s and girls here: Asperger’s and Girls

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?

 

Pathological Demand Avoidance group bids for charity status

debroarke

Deborah Rourke with Tania

The most popular post on Special Needs Jungle continues to be about the condition Pathological Demand Avoidance

Last week I met Deborah Rourke, who wrote the post – it turns out she lives close to me so I hope we will see a lot more of each other.

There is to be a PDA Awareness Day on May 15th, and Deborah writes here about the group’s plans.

****

Pathological Demand Avoidance syndrome is increasingly being recognised as part of the autistic spectrum. One group instrumental in bringing about this change is the PDA Contact Group,  a supportive website filled with contacts and information.

It has a forum where parents, carers and siblings can ask questions or simply vent their concerns. Our membership numbers over 2000 now and the forum is busier than ever with the number of enquiries for support and information is increasing.

LOGO1It is fast becoming clear that the group must consider the future and start thinking ahead. Awareness and recognition of PDA is greater than ever before and it is perhaps time for the group to develop its role in response to this change in status.
PDA may not have made it into everyone’s vocabulary, but it is on the agenda for being taken seriously by a wider range of professionals.

Our immediate aims are for the PDA contact group to become a registered charity and we are currently campaigning for 15th May every year to become PDA Awareness Day.

The National Autistic Society has put on several informative PDA conferences across the country and we feel workshops and seminars as well as participating at wonderful events such as The Autism Show,at Excel London 14/15 June is the way forward.

With help from government grants and kind donations, our future aims are to ensure accessible information is available in every GP surgery, play-centres, nurseries, schools, to further help raise PDA awareness and provide vital information across the board.

We are very excited and overwhelmed by all the generous offers of help, support, donations; it will provide us with the much needed resources to begin to provide some of the above services.

Please do not hesitate to explore our website: www.pdacontact.org.uk (a new one is on its way, to better manage the increase in demand).

You can now also find us on twitter: http://twitter.com/pdacontactgroup

Other recommended PDA information sites: http://advocate4pda.wordpress.com

http://www.cafamily.org.uk/medical-information/conditions/p/pathological-demand-avoidance-syndrome/
Supportive Facebook group: http://www.facebook.com/groups/7165353156/
National Autistic Society: http://www.autism.org.uk/about-autism/related-conditions/pda-pathological-demand-avoidance-syndrome.aspx

Autism Acceptance? It’s so much more than that…

Tania writes:

It’s Autism Awareness/Acceptance Day, Month, whatever… lots will be written today about what autism is and what it isn’t.

No one expects to have a child with an ASD/ASC, whatever they’re calling it this year. Once you have the diagnosis, it’s like entering a parallel universe of impenetrable mazes with multiple dead-ends, where people speak in strange acronyms and expect you to understand what they’re talking about.

You can get lost in the battle to secure services, support, suitable education and the funding thereof. As your child or children (in my case) grow, you will encounter different challenges such as transition to adulthood, training, independence.

If your child is five or six, you’ve probably not even thought this far ahead. This is just as well; it would be too much to cope with. We are now at this stage: my boys are 15 and 13.5 and both have different levels of need and what one may manage, the other may not.

superbabeOne thing we have learned – just when you think you’re doing okay, something comes along to trip you up and you have to take stock and look for new solutions. You are constantly operating at your maximum tolerance, so that when something comes along that you didn’t expect, it is easy to experience meltdown or even breakdown.

People on the outside often do not understand this and may judge you accordingly. This says more about them than you.

While working for better understanding, treatment and life chances for people with autism or any other condition is a necessary and constant crusade, for those families affected, it is much more personal. It can often be just as big a battle for self-acceptance and coming to terms with a diagnosis and that this is the way life now is.

For me, recent health issues have meant I have had to accept I am not superwoman and reassess my goals. After five years of not claiming school transport, I have now had to admit my limits and ask for a taxi for them. It’s a compromise; I won’t ask for both ways because  they need the security of knowing if they’ve had a bad day, it’s over as soon as they’re in the car with me.

Universal Truths

But whatever your personal circumstances, I believe there are universal truths, and not, for that matter, just for parents of children with autism, but for any parent of a child with a disability, medical condition or rare disease (named or not), so you can just substitute the word ‘autism’ for any of those.

We’ve been doing this a while now, so I feel pretty qualified to offer the following, based on my own experiences:

1. If you have never cared for a child with autism, you don’t know what it is like. Even if the parent seems fine and happy, you should never make assumptions of what it’s like being in their shoes.

2. It’s different for every family affected. For example, if you have a child with high functioning Asperger’s, it is likely to be a very different experience to life as the parent of a non-verbal, severely autistic child. This is even more true if your child has medical needs as well.

3. It’s hard work – mentally and physically, wherever they are on the spectrum. Some people cope with certain aspects better than others. Sometimes you will feel like you’ve been run over by a steamroller but you will eventually peel yourself off the floor like a flattened cartoon character, because you have to.

4. Stress and worry are likely to be your constant companions; maybe even depression. What do you expect? You’re only human. It’s okay to admit it and to seek help for yourself. In fact, it’s preferable than pretending everything is fine.

5. You will be judged. There will always be people who think they can parent your child better than you can. You will learn not to care.

6. You are likely to end up with more friends who have children with special needs than those who don’t.

7. You will feel like running away. Or worse. You almost certainly won’t end up doing either.

8. You will learn to smile when people tell you they don’t know how you cope, or that you do fantastically well. Inside you may well think, “If you only knew…” You may actually want to punch them, but it’s probably better to resist.

9. You will grieve at some level for the life as a parent you had envisaged before you actually were a parent. Then you will get over it and get on it with. After all, what’s the alternative? But at odd times, this grief will revisit you. This is normal.

10. You will read studies that tell you autism is caused by any number of things, most of which you will feel, at some point, are your fault. None of them are. Autism probably has lots of different triggers which result in similar symptoms. Read the studies, or don’t, they won’t change your reality.

All that matters is that you try to be the best you that you can on any given day. Some days will be good, some days (sometimes whole weeks) are better forgotten. Others can accept that or not; they can choose to be your friend and love you without judgement or not. You have no control over that.

Accepting yourself for being flawed and imperfect can be much harder than accepting your child’s diagnosis.

It’s what makes us human.

Children and Families Bill – the missing pieces

senreform2Earlier this month, we shared our Initial Views on the Children and Families Bill.  Since then, we have had chance to look at the Bill in more detail and wanted to share our views and more importantly to discuss “the missing pieces”.

As parents, we know the current system and its failings far too well so we welcomed the introduction of the Green Paper and the excitement of being involved in Pathfinders.  However, the Bill that we have been offered isn’t quite all that we were hoping for.

The reforms offered, “a new approach to special educational needs and disability that makes wide-ranging proposals to respond to the frustrations of children and young people, their families and the professionals who work with them”  and a vision of reforms to, ” improve outcomes for children and young people who are disabled or have SEN, minimise the adversarial nature of the system for families and maximise value for money”.

What we’ve been given in the Children and Families Bill has not quite lived up to the hype.

The good bits:

  • Children, young people and their families are to be true participants in all decisions affecting them
  • A duty for health, social care and education to commission jointly (which theoretically means they will actually speak to each other)
  • Education Health and Care Plans (EHCP) to be available up to the age of 25
  • Academies and Free Schools to have the same SEN requirements as maintained schools
  • Independent Special Schools will be included on the list of schools that parents can request as a placement (although the proviso about ‘efficient use of resources’ is still in there)

What’s missing?

  • Disabled children and young people without SEN.  Despite the Green Paper offering improved outcomes for children and young people who are disabled or have SEN, the Children and Families Bill is only offering the new EHCPs to those with SEN.  This decision shows a real lack of understanding from the DfE about the difficulties that children and young people with “just” a disability (and no SEN) face.  The Children and Families Bill suggests that the needs of these group will be met by the Local Offer.
  • Local Offer – Minimum Standards.  Currently, the DfE are suggesting a “common framework” for the Local Offer.  This could possibly (and will most probably) result in a postcode lottery.  As the Local Offer is being offered as the alternative to EHCPs, there needs to be much clearer legal obligation of minimum standards for Local Authorities.  “Minimum” indicates that something is the very least which could or should happen. “Framework” indicates a skeletal structure designed to support something.
  • There does not appear to be, within the Bill, a “duty to provide” the contents of the Local Offer, just to publish it and that a local authority “may” wish to review it “from time to time”. All a little bit wooly.
  • School Action/School Action +.  There is no mention within the Bill as to how the needs of children currently on SA/SA+ will be met.  Again, if the Local Offer is to be the alternative then this  needs to be much more prescriptive to Local Authorities. The DfE says the replacement structure for the present lower categories of SEN will be defined in the new Code of Practice which is now starting to be drawn up – interestingly by a different team of officials to the one that drafted the bill. Hmmm.
  • No duty on health or social care to provide the services within the EHCP – just an obligation to jointly commission with the local authority. There needs to be an realisation in government that the words “Joint Commissioning” aren’t a new magic spell – a sort of Abracadabra for SEN. Optimistically repeating the “Joint Commissioning” mantra doesn’t mean it’s, as if by magic, just going to happen.
  • No specified time frames from when you apply for an EHCP assessment to when you receive an assessment and more importantly, a EHCP.  Currently, it takes 26 weeks from applying for an Assessment of SEN to actually receiving a Statement of SEN.  This, as a parent, can seem like a lifetime (especially if you only hear about the need for a statement a short time before your child attends school – and yes, this is more common than people like to admit). However, you can see a light at the end of the tunnel with a deadline of 26 weeks.  The new Bill does not provide any defined time scales and this is essential for families. It does say that the regulations may make provision for this – but “may” should really be replaced with “must” as this is a key point.
  • Key worker – throughout the Green Paper, there was mention of a key worker for families.  One person to go to, who would help the families through the jungle but there is no mention of this within the Bill.  This is one of those key features that really excited a lot of families.  The ability to have one person; one person who would repeat your story for you and point you in the right direction to access the support your family needs. This is one aspect of the initial aspirational Green Paper that needs to be clarified – both for families and practitioners. Was this just an absent-minded omission from the Bill or has the DfE decided to quietly sweep this innovative and important role under the carpet? Note to DfE: if it’s the former, someone needs a slapped wrist, if it’s the latter, you’ve been rumbled so put it back in, pronto. Or is this another point for the “regulations”?
  • Time – the current Bill is scheduled for Royal Assent in Spring 2014 (i.e. passed into law) with September 2014 being proposed for when this will come into practice.  How will Local Authorities and PCTs manage to train all the necessary staff in this short time (especially with a 6/7 week school holiday in that time)? Ask any parent and they will say the same: they would far rather wait for another six months so that LAs can get all their recruiting and training in place (not to mention their funding arrangements) than inherit a chaotic mess where no one knows what’s going on, where the money is coming from and half the staff still hanging on to the old adversarial ethos.

While we’re on the subject of culture change, a DfE official did mention to us that he thought re-training to effect culture change should be starting now. I would be really interested to know what funding or provisions or courses there are in existence or planned, to begin this process – which is arguably one of the most important parts of the entire process. Indeed, it might be a little controversial to suggest, but if a root and branch programme of culture change within LA SEN departments had been put into practice to start with, there may have been less need to overhaul the entire system.

The new Children and Families Bill does have the potential to provide children and families with, “A new approach to special educational needs and disability” and to, ” improve outcomes for children and young people who are disabled or have SEN, minimise the adversarial nature of the system for families and maximise value for money” but not without some more thought and considerable tweaking.

Tania & Debs

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.

***

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

(more…)

Chinese Whispers and Garth’s Uncle

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

Communication:  the imparting or exchanging of information or news

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

(more…)

Ordering at Starbucks, Asperger’s style

Yesterday, I took the boys shopping to Basingstoke. As I’m not currently able to walk far, I sat in Starbucks armed with my iPad to do some work, while they toured Festival Place, pockets filled with Christmas cash.

Now, I’m not good at Starbucks. I don’t even like coffee that much and would rather not consume my daily calorie allowance in one latte topped with whipped cream. Then, what size do you want? I can’t even remember what the sizes are called, never mind how big they are. By the time I get to the front of the queue, I’m as glazed as a doughnut, so I always go for tea, Earl Grey, errm, medium? Ish? I know, it’s very “Mrs Brady, Old Lady” of me.

cupI hadn’t been there too long before Son2 joined me with his purchases from Lush. He is a big Starbucks fan so I gave him some cash for a drink and he joined the inevitable, slow-moving queue.

I had a proud moment, marvelling at how Asperger’s Son2, 13, was now able to queue and ask for what he wanted by himself as well as meander round the shopping centre (that he knows well) without me.

I watched from my seat as he made his choice, paid and wandered over to end to await his order. Then Son1 appeared, exchanged a few words with his brother and came over to me, looking incredulous.

“He said the woman asked what his name was to put on the cup and he told her it was David!

David is not Son2’s name. Not even one of them. Not even close. Son2 approached with his drink and I asked him why he’d said that it was.

He shrugged. “I panicked!” he said. I understood immediately, for, dear reader, the apple doesn’t fall far from the tree.

We headed back to the car but it soon became apparent that Son2 was not enjoying his choice of beverage, a Vanilla Spice Latte. He passed it to Son1 who asked him why he’d chosen it.

Son2 grinned. “I panicked…”

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

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

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

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

Read More

Advice for SENCos – the parents’ perspective from Hayley Goleniowski

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

Read More

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

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

Read her story:

Pathological Demand Avoidance – one family’s story

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

Read more

Helping your special needs child – a mother’s story

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

Read more

Empowering parents is the goal for Pat

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

Read More

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

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

Read more

What now for Asperger’s?

There’s been a lot of talk about the re-classification of Asperger’s Syndrome in the new US DSM-V Manual of Mental Disorders – in other words it’s bee ‘abolished’ in its own right and brought under the category of Autism Spectrum Disorder.

What does this really mean? Specifically, what does this mean for people in the UK? Below is an article from NHS Choices that sets it all out sensibly.

***

dsmvboyAsperger’s syndrome dropped from psychiatrists’ handbook’, is the headline in The Guardian. The news is based on a press release from the American Psychiatric Association (APA) announcing the approval by their Board of Trustees of a revised fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). The DSM was first published in 1952 and is often referred to as the ‘psychiatrists’ bible’ in the US.

The DSM is essentially designed to be a ‘user manual to diagnose mental illness’ – providing US psychiatrists with clear definitions of what pattern of symptoms correspond to specific conditions. This fifth revision, which has been a controversial issue of ongoing debate among psychiatrists and medical ethicists, is due out in May 2013.

One (amongst many) of the controversial decisions taken by the panel, made up of over 1,500 mental health experts, involved in drawing up the new draft guidelines, is to remove Asperger’s syndrome as a separate diagnosis and replace it within the term ‘autism spectrum disorder’.

In the terminology of the DSM-5 – Asperger’s syndrome would be seen as being at the ‘upper end’ of the autistic spectrum disorder (ASD). That means people with this type of ASD would normally have unaffected intelligence and language development, but would have milder symptoms affecting social interaction, behaviour and language comprehension.

message about DSM-5 written by the president of the APA (PDF, 105Kb), Dr Dilip Jeste, touches on the complexities and challenges of revising an established diagnostic system, as reported in the media. These include conflicting views among experts and the under-diagnosis and over-diagnosis of patients.

Dr Jeste also says that narrowing diagnostic criteria is often blamed for excluding some patients from insurance coverage in the US, yet efforts to diagnose more patients are sometimes criticised for expanding the market for the pharmaceutical industry.

The chair of the taskforce responsible for overseeing the DSM-5 revisions, Dr David Kupfer, said: ‘Our work has been aimed at more accurately defining mental disorders that have a real impact on people’s lives, not expanding the scope of psychiatry’.

How much of an impact will the DSM-5 have on care in the UK?

Despite the media hype, the revised classifications in DSM-5 will have limited impact on individuals who receive mental health care in the UK, at least in the short-term.

Psychiatrists in the UK tend to use the World Health Organisation’s International Classification of Diseases (ICD) system to diagnose mental health conditions, rather than DSM, which is used in the US.

Also, the term ‘autistic spectrum disorder’ (and the concepts underpinning it) have been widely used in the UK for many years. However, in the long-term, it is difficult to predict the potential impact the DSM-5 will have on the future diagnosis and treatment of mental health conditions.

Earlier versions of the DSM have had considerable influence, both in the US and across the world, in shaping opinions and driving research agendas. For example, it was the publication of the previous version (DSM-4) in 1994 that helped ‘popularise’attention deficit hyperactivity disorder.

What is the DSM-5?

The DSM-5 (the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders) is produced by the American Psychiatric Association (APA) and is the diagnostic manual used by US clinicians and researchers to diagnose and classify mental disorders. The Diagnostic and Statistical Manual (DSM), first published in 1952, has undergone several revisions to take into account progress in medical and scientific knowledge and an advanced understanding of mental illnesses.

The DSM-5 is set for publication in May 2013 and will be a revision of the DSM-4 that was produced nearly 20 years ago.

According to a message from APA President, Dr Jeste, the DSM-5 reflects the best scientific understanding of psychiatric disorders and will optimally serve clinical and public health needs. Dr Jeste says ‘the hope is that the DSM-5 will lead to more accurate diagnoses, better access to mental health services, and improved patient outcomes.’

The DSM is broadly based on the classification system published by the World Health Organization (WHO), called the International Classification of Diseases (ICD).

The ICD system is used by the UK and other members of the WHO. It allows doctors to look at clusters of symptoms to form diagnoses for all health-related conditions, including mental health conditions.

The current version is ICD-10, and it is ICD-10, rather than DSM, that psychiatrists in the UK predominantly use to diagnose mental health conditions.

Is Asperger’s syndrome no longer being considered a mental illness?

Autism and Asperger’s syndrome are both part of a range of related developmental disorders, which are characterised by:

  • a person having problems with social interactions with others
  • difficulty communicating with others
  • the person tends to have a restricted, repetitive collection of interests and activities or rigid routines or rituals

The main difference between autism and Asperger’s is that people with ‘classic autism’ tend to have some degree of intellectual impairment. According to the press release, several categories from DSM-4 (including Asperger’s syndrome) will be replaced by a single diagnostic category of autism spectrum disorders in DSM-5. The following disorders will be incorporated under the diagnosis of autism spectrum disorders:

  • autistic disorder
  • Asperger’s syndrome
  • childhood disintegrative disorder
  • pervasive developmental disorder (not otherwise specified)

The press release says that this is to help more accurately and consistently diagnose people with autism. This does not mean that Asperger’s syndrome is being removed from the DSM classification system, only that it is being placed under a single diagnostic category.

Under ICD-10, both autism and Asperger’s syndrome are classed under what are known as ‘pervasive developmental disorders’ – pervasive meaning that the characteristic features of these conditions (for example, social interaction and communication problems) are a feature of the person’s functioning in all life situations.

What new mental illnesses does the DSM-5 list?

According to the press release, the DSM-5 will include approximately the same number of disorders that were included in the DSM-4.

Additional mental disorders set to be included in the DSM-5 are:

  • disruptive mood dysregulation disorder – which is intended to address concerns about potential over diagnoses and overtreatment of bipolar disorder in children
  • excoriation (skin picking) disorder – which will be included in the obsessive-compulsive and related disorders section
  • hoarding disorder – which is said to be supported by extensive scientific research on this disorder and included to help characterise people with persistent difficulty discarding or parting with possessions regardless of their actual value

What other changes are included?

The revised manual (DSM-5) will include a section on conditions that require further research before their consideration as formal disorders. This section will include:

  • attenuated psychosis syndrome – where people have psychotic-like symptoms (such as hearing voices), but not full-blown psychosis (unable to tell the difference between reality and their imagination)
  • internet use gaming disorder – essentially, an online gaming addiction
  • non-suicidal self-injury – self-harming behaviour, but not with the intent of ending life
  • suicidal behavioural disorder – a type of personality disorder that increases the risk of a person taking their own life

Disorders that will not be included in the revised manual (DSM-5) include:

  • anxious depression – a term proposed to describe mild to moderate symptoms of anxiety and depression
  • hypersexual disorder – so called ‘sex addiction’. For more information see our October 2012 analysis “Media claims ‘sex addiction is real“.
  • parental alienation syndrome – a term proposed to describe a child who ‘on an ongoing basis, belittles and insults one parent without justification’
  • sensory processing disorder – a term proposed to describe people who have difficulties processing sensory information (for example, visual information or sounds)

Other changes to the DSM-5 reported in the press release include:

  • a broadening of the criteria for specific learning disorders
  • a new chapter on post-traumatic stress disorder that will include information for children and adolescents
  • removal of certain bereavement exclusion criteria – making clearer the difference between natural feelings of grief and mental illness.

Does any of this affect me?

Until the publication of the DSM-5 in May 2013, there will be no changes to diagnoses of mental disorders. Importantly, the DSM-5 is a US publication, so its main impact will be in the US where clinicians use the DSM-5 to diagnose mental disorders.

Clinicians in the UK predominantly use the ICD-10 system to diagnose mental disorders, while the DSM classification system is mostly used for research purposes.

As mentioned, in the long-term, the new version of the DSM may have long-term healthcare, as well as cultural and political, implications that are impossible to predict.

Analysis by Bazian. Edited by NHS Choices. Follow Behind the Headlines on twitter.

Links to the headlines

Asperger’s syndrome dropped from psychiatrists’ handbook the DSM. The Guardian, December 2 2012

Fears for Asperger’s families over quality of care as disorder is dropped from ‘psychiatrists’ bible’. Daily Mail, December 2 2012

Further reading

American Psychiatric Association. American Psychiatric Association Board of Trustees Approves DSM-5 (PDF, 155Kb) (Press Release). Published online December 1 2012

Son1 is 15 today-and proof that the right support can work miracles

Today is the International Day for Persons With Disabilities, which will be marked worldwide. It’s also Son1’s 15th birthday and I would like, today, to offer a message of hope for parents of children with behavioural problems and Asperger’s who are worrying what the future may hold for their children.

Son1 - All rights reserved

Aged 7

When Son1 started school, we already knew that it was not going to be an easy ride. Fiercely intelligent and sporty with a bright blonde mop of hair, we still hoped for the best. At pre-school, the undertrained staff had already shaken their heads at his unwillingness to go along with everyone else. If he couldn’t have the colour cup he wanted, he would rather not have the drink. He would tear around, regardless of who was around him.

Within the first few terms of reception, he had a behavioural chart. He couldn’t bear to be anything but first in the queue and if something went wrong, he would sit under the table and refuse to move. He found it impossible to see others’ point of view; on outings he was a danger to himself. Making and keeping friends was another issue. Needless to say, this all had an impact on his learning.

He loved football but would often sulk on the sidelines if he couldn’t play where he wanted. At home he would have rages, was often uncontrollable and nothing we did seemed to make any difference.

Needless to say, we were drained, stressed and desperate to help him. I even helped in school twice a week to make sure I knew what was going on there. My husband became a team football coach – something he still does – to support him.

So, lacking any useful help or advice from school, I got wise, did my research, got a referral to a paediatrician and discovered what the problem was – Asperger’s with Hyperactivity. I worked really hard to get him the statement he needed to support his social and emotional needs. We tried and discounted medication; we tried a different diet. This was against a backdrop of having a younger son with medical, social and educational needs for whom we also had to find a solution.

And find it we did.

For the last five years, as you may know, both our boys have been at the most fantastic independent specialist school that is designed for bright boys who find it difficult to learn in a mainstream setting. They may have dyslexia, dyspraxia, increasingly Asperger’s or another learning difficulty. Schools like this are few and far between and, as far as I know, there is no comparable girls’ school. We even moved house to be closer for the daily school run.

Son1, now he has been getting the right education in the right environment, is growing into an independent, clever, thoughtful young man. He has a love of, and a talent for music. He has a sense of humour. He still has his impulsiveness and stubbornness but he listens to reason – as long as you don’t ram it down his throat. Best of all, he has friends.

Some of this is down to growing up in a stable home with a family who work hard to make sure that he has what he needs – which is not always the same as what he wants. But mostly it’s the intensive input and care from the experts in the Learning and Development Centre at school

Son2 winning Chairman's Player of the Year for 2012

Son2 winning Chairman’s Player of the Year for 2012

I’m telling you this because I know very well that there are parents reading with younger children who are still at the ‘before’ stage. Who may be wondering where to turn, who can help them or if their child will ever have the kind of life they had envisaged for them. They will have faced disapproving looks from parents at the school gates and from teachers who are not trained in either recognising or supporting this type of child.

On this Day of Disabilities, I also think of those children with such severe difficulties that they may never reach adulthood, or who will be dependent on their parents or on medical care for as long as they are alive. And I realise that we are lucky. Our younger son does have medical difficulties that we have been struggling to get to grips with and this is hard, with an uncertain future, but we have experience enough now to know that we will cope.

This is not to say that some have it worse so you can’t feel bad – no one can tell you how to feel and when we see our children suffering it is devastating, whatever their condition.

But for boys like Son1, there is a solution. It takes lots of work, determination, strength and persistence – for them, you and their school. As further proof, this year at his football club, he won the Chairman’s Player of the Year Award. He played in goal for two seasons to benefit the club, even though he prefers being a striker.

My message to you is do not give up. Keep looking until you find the right solution. Get educated, get help – for your child and for yourself – but above all, believe that the future will be better.

Pathfinders, politics and parental co-production

Last Friday, our parent-carer forum in Surrey, Family Voice joined with Surrey LA and local voluntary and community services to host an SEN reform pathfinder update.

Surrey is one of 31 Local Authorities that make up the 20 pathfinder areas, with Surrey being part of the largest group, the SE7.

We had a great line-up of guests including Stephen Kingdom from the DfE, SEN barrister Gulshanah Choudhuri and Susie Campbell, the woman who has been responsible for pulling together all Surrey’s different streams of work for the pathfinder trials – a huge job.

This was an important conference and the right time to update parents whose children these reforms will affect. The draft bill was published last September and since then it has been picked over by parliamentarians, local authorities, charities and lawyers.

Ministerial Assurances

Stephen Kingdom, for the DfE, re-stated the Minister in charge, Edward Timpson’s assurances that no rights would be taken away from parents or children and that there was definitely scope in the draft bill for a tightening up of the language to  make that clear. He said they were working with the Department of Health on structures for redress if a stated provision is not made by a health organisation.

On timescales, he said they would be shorter than they are at present and the requirement for mediation would not extend the timescales for appeal. As mentioned on this website last week, Mr Kingdom confirmed that Speech and Language would stay under the remit of education and said that an ECHP must be as clear and specified as statements “should be”.

The Good, Bad & Ugly

Gulshanah Choudhuri

Gulshanah Choudhuri of SEN Barristers, called her presentation “The Good, The Bad and the Ugly” and addressed some of the legal concerns over the bill’s wording, in particular that there is no duty on health to come up with the provisions in the proposed Education, Health and Care plan, beyond a stated commitment in the new NHS Mandate for ‘joint commissioning’. She called on the government to make sure that children who may not have an educational need but do have a significant disability and so will need health and care provision are included in the final bill.

Gulshanah also called for the new SEN Code of Practice that must accompany the bill to undergo parliamentary scrutiny because it is the bible that parents, SENCos, lawyers and Local Authorities use and as such it is vital that it is closely inspected to ensure that it is the best it can be. Make it updateable by all means, but first of all, it has to be right.

Co-production a “no-brainer”

I spoke on behalf of Family Voice Surrey as co-producers of the conference and this, in itself shows how far we have come in changing the relationship from being on opposite sides to having our opinions given equal weight. If this government is to be lauded for just one thing it is that parents have been put at the heart of the reform and mandated to be closely involved with any decision-making processes that will, of course, affect our children. Even though my boys are now 15 and 13, with an EHCP going up to 25, we’ll be in the system for at least another ten years.

Family Voice Surrey is still a relatively new parent carer forum. We had our launch about this time last year it’s been quite a challenging year so far because we had to plunge straight into the pathfinder workstreams as parent representatives.

Fighting to get the right support can be lonely and isolating and frustrating, especially when it seems that the services you need are not available or you’re told your child doesn’t qualify for them or that you’ve have to fight for the educational help they need every single step of the way.  Expensive legal battles for assistance have become far too common and unacceptably adversarial. We all have many horror stories and they are still being created as this culture change has most definitely not yet filtered through to the coalface of SEN departments up and down the country.

Changing all this is what the reforms are supposed to be about. As parent representatives, we’re not there to window dress. After a tentative beginning on all sides, we’ve worked together for the best part of a year, and our views are listened to. I think that co-production has largely so far been a positive experience. It has most certainly given us a voice as parents and, I think, Surrey has seen the benefits of having the first-hand perspective of SEN services that we bring – even though our views are not perhaps always comfortable to hear.

It’s a no-brainier when you look at it. How do you know if you’re delivering the right support and services if you don’t speak to the people using them and their families?

The Minister, Mr Timpson certainly seems to be listening to those concerns that have been voiced and I hope that the bill’s wording is tightened up as soon as possible. Good intentions and assurances are fine, but I think everyone would feel much better if it was down in black and white in the Bill itself.

Reform – expensive but worth it

As for the trials themselves- they are only just beginning. Some families have been recruited, but this is an ongoing process.  Key workers- the person who is to guide a family through the whole process- are still being found and trained. The trials will need to be monitored and evaluated and, at the moment while there is nothing in law, a child who qualifies for an EHCP will still also need a statement as their statutory protection.

There is still much work to be done, and as the trials have been extended until September 2014, more money will need to be found to support this. There’s no doubt it’s going to be hugely expensive by the time the new system is finally in place, but if there’s something worth doing, it’s this.

In the same way that it is right to support children from difficult backgrounds so that they do not perpetuate the expectation of a life on benefits, it is right to support children with special needs and disabilities because many, though obviously not all, will have a much better chance of becoming a contributing member of society with the right assistance when it counts – in their school years and early adulthood.

This is the way to cut welfare – over a generation of helping our adults of tomorrow reach their potential, have a positive outlook and believe that they can achieve their dreams, wherever they lie. It is the responsibility of today’s adults – all of us – to help make that happen.

Can you help with Pathological Demand Avoidance Research?

I was checking the most frequently used search terms that brought people to my site the other day and one of the top ones was “Pathological Demand Avoidance”
I ran an article a while ago by Deborah Rourke about PDA and it still continues to be very well visited, so I know that this is an important issue for many parents who are seeking information about the condition, which is very under-recognised.
I would now like to introduce you to a mum who would like your help as she researched Pathological Demand Avoidance for her dissertation. Hannah Reynolds has a very personal reason for choosing the subject.
** Please see update at bottom**
***

Hannah Reynolds

Hi, my name is Hannah Reynolds and I am stuying for a MSc in Forensic Psychology at the University of Portsmouth. I am also mum to two daughters, one of whom I suspect may have Pathological Demand Avoidance Syndrome. I’m fascinated by this condition and, particularly, why some children with PDA behave very differently depending on the environment they are in – between home and school, for example (like my daughter!).

For my dissertation, I will be conducting research into this particular feature of PDA  and am currently looking for people who would like to participate in my study once it is up and running (next year).
So, if your child – with OR without an official PDA diagnosis – shows this difference in behaviour between environments, please send an email to hannah.reynolds@myport.ac.uk and I will add you to a database of participants.
I want to make this as informative a piece of research as possible so please, if this description fits you (or anyone else you know), get in touch!
Many thanks
Hannah 🙂
** Update from Hannah January 2012***
It has been necessary for me to tweak my project proposal (this is common in the early planning stages) and, though I will still be researching PDA, I will be conducting a more in-depth, qualitative study into parents’ and teachers’ experiences of a child with this syndrome. In a couple of months, I will post an update on this website (thank you very much, Tania!) to advertise for participants so please check back for this.
I am very grateful to those parents who have already emailed me and I would like to hold on to all details for any future research I might carry out in this field. Please let me know if you would like your name removed. To any parents who would like to be considered for further research on PDA, please email me – hannah.reynolds@myport.ac.uk – and I will add your name to my database.
Many thanks for your time and don’t forget to keep checking for updates!

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

Thoughtful special needs blogs, top tips and news you can use

It’s been a busy week for lots of special needs mum bloggers – as you’ll see there are some fabulous, thought-provoking posts from Claire at A Boy With Aspergers and Deb and Aspie in the family, as well as a couple from Lynsey at MummaDuck. I love reading their posts, they’re always interesting, sometimes moving and are a reminder that resilience and strength can be found even at the darkest and most difficult times.

I’ve changed the format this week to give a little taster of what you can find if you click the link and I hope you do, because these articles and blogs are all well worth taking the time to read.

There will be no round up next week as I will be in Sweden talking social media at a meeting of Europe-wide limb difference organisations. It’ll be a chance to meet lots of new people who will all have their own perspective of what it’s like to live with physical disability in different parts of the world.

So make these stories last, if you can! You can also subscribe to this blog via email or on your kindle. Even better now they have new types of Kindle just out or if you have the Kindle app for smart phone or tablet. Enjoy!

Lots of our children have difficulty with laces, especially if they are dyspraxic, and Son2, for one, has developed his own, somewhat unique, style of doing his shoes up. These days it’s easier with velcro straps, but sometimes, such as with trainers or football boots, it’s just not possible. Plus, as they get older, velcro isn’t very cool…

Children who suffer emotional neglect may have a higher risk of chronic cerebral infarction as adults, an observational study found…

I have indicated in previous posts that things have been getting tough with J1 in ways other than his physical disabilities.  I do not mean for J1, but for me…

Epilepsy occurs at a much higher rate in children with the diagnosis of autism. I have a 7-year-old son with the diagnosis of PDD-NOS. After hearing Michael Chez, MD, speak about the high rate (about 66%) of abnormal EEGs in children on the spectrum, I got my son tested…

I don’t think anyone would argue with the fact that our present understanding of autism, with all its heterogeneity, elevated risk of comorbidity and slightly more fluidic expression than perhaps originally thought [1], still remains quite limited…

Despite the success of the London Paralympics, new research has revealed that 86 percent of disabled people who responded to a recent survey think the UK travel industry is still not providing sufficient information about disabled access and facilities…

A few months ago, Special Needs jungle ran an article about Pathological Demand Avoidance by Deborah Rourke There was an incredible amount of interest in this article, written from Deborah’s experience. In November, the National Autistic Society is to hold another conference on PDA…

So the draft legislation has been out a few weeks now and one of the biggest changes that has stood out most to me is that of Compulsory Mediation. As things stand at the moment, A parent can lodge an appeal to the first tier tribunal as soon as the local education authority (LEA) has written to the parent setting out a child’s proposed provision in the form of a draft statement…

My son is continuing to receive home tuition provided by the local authority.  For 4 days a week he receives about an hour of tuition a day covered by two tutors.  It doesn’t sound a lot but this is all he can cope with at the moment…

I begin with my own high point of the month over at Downs Side Up which sent me dashing to my Mac with tears in my eyes, the kind of blog post that is written in 20 minutes because the emotion is so crystal clear…

Rather than David Laws, who took over Sarah Teather’s ministerial job, and much to the relief of many I expect, the SEN portfolio will be managed by Edward Timpson MP who is Parliamentary Under Secretary of State (children and families). Mr Timpson has sat on the Children, Schools and Families Select Committee and the Joint Committee on Human Rights. Until his ministerial appointment he was also chairman of the All Party Parliamentary Groups on Adoption & Fostering and Looked After Children & Care Leavers, vice chairman for the Runaway & Missing Children group…

The Department for Transport (DfT) has launched a consultation on who is eligible for the Blue Badge Scheme when Disability Living Allowance (DLA) is replaced by the Personal Independence Payment (PIP). This is due to happen for people aged between 16 and 64 from April 2013. They are seeking views on three different options…

Conference on Pathological Demand Avoidance

A few months ago, Special Needs jungle ran an article about Pathological Demand Avoidance by Deborah Rourke There was an incredible amount of interest in this article, written from Deborah’s experience.

In November, the National Autistic Society is to hold another conference on PDA. Information on PDA is extremely limited and this event will be a rare opportunity to hear experts speaking on the latest research and best practice. Last year, it was sold out, so if you’re interested and can get to Edinburgh, don’t delay in booking your place.
The main difficulty for people with PDA is their avoidance of the everyday demands made by other people, due to their high anxiety levels when they feel that they are not in control. However, because they tend to have much better social communication and interaction skills than other people on the spectrum, they can use those skills to disguise their resistance through avoidance behaviour.
Date: Thursday 15 November 2012
Location: John McIntyre Conference Centre, Edinburgh
Attend to: 

  • hear the latest research findings
  • understand what PDA is and what the implications are if a child is diagnosed with the disorder
  • learn practical strategies for interacting with children with PDA
  • network with other professionals, parents and experts in the field.

This conference will provide professionals and parents with clearer understanding of the diagnostic criteria for pathological demand avoidance syndrome (PDA).

The conference will also feature essential strategies for education, management and communication of children and adults with PDA. Our programme of expert speakers includes:

  • Dr Judith Gould, NAS Lorna Wing Centre for Autism
  • Phil Christie, The Elizabeth Newson Centre
  • Ruth Fidler, Sutherland House School
  • Dr Jacqui Ashton-Smith, Executive Principal, Helen Allison and Robert Ogden schools.

For more information or to BOOK your place, please visit:  http://www.autism.org.uk/conferences/PDA2012

All Change: Back to school news with the new draft SEN bill

Back to school for most children this week, except for my boys, whose school finally returns next Tuesday. I’d better check over their uniforms this weekend and get the shoe polish out!

Big news in the SEN world this week with the draft SEN bill being published, swiftly followed by the exit from the DfE of Sarah Teather. The bill will be scrutinised by the Education Select Committee and the DfE says, will be updated as results from the pathfinders come through, whenever that may be. Over the coming weeks, views will be sought on the draft bill.

Pathfinder trials are getting underway and it’s clear there is a lot of work to be done, not only in the trials but in the eventual writing of a new Code of Practice and for all local authorities in updating their SEN publications. If you’re a pathfinder family, I’d be interested in hearing from you about your experiences, wherever you are.

Read SEN & Disability News (Quick before they ban disability)

The spotlight is firmly on disability in the media at the moment, with the Paralympics underway, not to mention the ATOS games as disability rights protestors demonstrate against the government’s new assessments aimed at getting people off disability benefits and into work.

It is quite a contrast, as on the one hand the country, quite rightly, celebrates its finest athletes who happen to have some form of impairment, against those, rather more everyday disabled people, who are currently living in fear that vital financial support will be removed from them in a government-ordered assessment that appears to be more akin to blunt force trauma. For a really thoughtful post about this, see my top story selection below by Polly Toynbee in The Guardian.

The government would do well to remember that our society is judged by how we treat our most vulnerable. As they sit and watch as the Paralympic athletes do us proud, I hope Mr Cameron et al, feel at least a little prick of conscience.

Take a look at the week’s stories – don’t forget to leave your own favourite too in the comments

What’s your experience of CAMHS?

Many of our children have to be referred to CAMHS – The Child and Adolescent Mental Health Service – to help manage their behavioural difficulties or perhaps if they are experiencing a difficult period of depression or anxiety.

After a very difficult Year 8, largely due to an issue with a particular teacher about whom the less said the better, we found ourselves in this position with Son2, who has Asperger Syndrome. He was referred by his paediatrician at the end of last year.

The paediatrician, it later transpired, in the battery of blood tests ordered, had not included a Vitamin D test and so missed that part of his issues stemmed from a severe Vitamin D deficiency. This was only picked up by our forward-thinking GP, when Son2’s legs began to cause him pain some weeks later.

So, we wait for the CAMHS appointment. And wait. And wait. Meantime, Son2 was finding it difficult to go to lessons and is on many occasions, unable to go to school at all, a stressful situation for the whole family.

Then eventually, an appointment arrives, SIX MONTHS after referral. My husband takes the day off and off we go. At the appointment is the paediatrician and a CAMHS psychologist who shall remain unnamed to save their blushes. Son2, predictably, refuses to speak to either of them.


We explain Son2’s issues, as the paediatrician yawns through the whole appointment, then takes a phone call. At an appointment we have waited six months for. I studiously ignore him. The psychologist agrees to prescribe a trial of a particular medication and says she will call the school to speak to his counsellor there before we get it filled. However, to the best of my knowledge, she does not and we are left with an unfilled prescription a week later, still waiting to hear back from her. I call and leave a message. No response. So, I decide to get the prescription filled although Son2 will only agree to take it after I take him back to our GP who explains to him the effect it will have on him and that he will soon start to feel better, something, presumably, the psychologist should have taken the time to do.

Within a couple of weeks, indeed Son2 is feeling better and even manages to go to the local shop by himself for the first time in a year. But there is still no word from the psychologist and we are coming to the end of the bottle. I call the GP who agrees to prescribe a further bottle, even though this is supposed to be a monitored trial.

Off we go on holiday, where Son2 has a couple of relapses but is generally much better. When we return, there is still nothing from the psychologist, so I call my GP again to ask who should be monitoring Son2 as we have heard nothing, nor have we received a follow up appointment. She checks her screen and has a recent letter scanned in that says Son2 had been referred to the wrong county sector of CAMHS and had been re-referred to a different local region. They had not bothered to cc us in because, of course, as the child and his parents, we are the least important people in this process, it would seem.

I am incensed. And as David Banner used to say just before he turned into the Incredible Hulk – don’t make me angry. You wouldn’t like me when I’m angry.

I call the new department to find out what is happening and, to avoid my call going ignored again, I  pass on to the lady who takes my details that I am also co-chair of the local parent-carer forum and a response would be appreciated, as I am extremely unhappy at this rather careless administration when they are dealing with a vulnerable child who has been prescribed some serious medication.

An hour later, a lady calls me, very concerned that I shouldn’t be complaining about them and I assure her that it’s not them at fault, but the other CAMHS section. We now have an appointment for 25th September. So, because of this mistake in referral Son2 will have had three months with no monitoring for a child who was only put on an initial trial of an SSRI.

It doesn’t bode well for the future for an integrated health, education and care plan if they can’t even figure out where you should be referred. And at the heart is an autistic boy who has been suffering since the end of last year. Parents should not have to chase for information, it’s very distressing, because it makes you feel very alone and insignificant.

Because of my position, I happen to know the head of CAMHS in our county (a very sincere person, in my experience) and I emailed her to tell her about the whole sorry tale. As I expected, she was horrified and apologised, assuring me she would ensure Son2 received the right treatment and that she would also take steps to make sure this did not happen to anyone else.

However, I am not sure my experience of CAMHS, in any county, is particularly unusual, or even especially bad, and I would be interested in hearing your story too.

August’s top bank holiday SEND stories

After a two week break, the Special Needs Jungle weekly curation of the best of special needs posts is BACK! I’ve tried to include stories I tweeted while I was away in Italy being subjected to torture by invisible mosquitos. My top holiday tip if you have teenagers like mine is to make sure your holiday home comes equipped with free wifi for those inevitable downtimes, so you are never plagues with cried of, “I’m bored!”

My boys still have another two weeks and a bit weeks off, and I intend to spend some of it taking them to our new gym, as I’m fed up of us all being locked in our little corners of the house on our respective computers (though at least I’m doing actual work). The gym is brilliant with a huge pool and great facilities, including a spa (for me, obviously) and, of course, free-wifi so that Son2 can sit pedalling the cycle machine while playing on his iPad. Well, it’s a start and a compromise, but at least part of him is moving.

Have a fab August bank holiday weekend and fingers crossed for good weather if you’re planning a barbecue or a last dash away! Next week – the paralympics!

Autism updates, SEN stories and happy holidays!

My top story this week is just out – a 90,000 drop in the number of children identified as having SEN. Do I think that SEN is on the decline? Of course not. The report in the TES says, “Brian Lamb, who led a review of parental confidence in the SEN system for the last Labour government, also identified training and funding as key reasons for the drop. But he said that the most important question to ask was whether children’s needs were being met.

“It’s positive to see a fall as long as we can be sure this is because of better assessment and the removal of perverse incentives,” said Mr Lamb, who is now chair of the SEN charity Achievement for All. “I hope the fall is not because schools are not addressing special educational needs.”

This is a point that I agree completely with and was my very first thought. Read the rest of the article for yourself and draw your own conclusions.

Also in this week’s top stories include using pets to help kids with autism (something we all already knew as well) and Barnardo’s report about tackling the causes of bad behaviour and not just the symptoms – this is an issue I have written about myself before.

I also want to highlight this week’s SNJ Guest post, from Rob Pleticha at EURORDIS, the European rare diseases organisation, who regularly volunteers at camps for children with serious illnesses. The one he’s written about is Barretstown in Ireland. If you have an 18+ year old lounging about at home or on a gap year, they could do a lot worse than be a volunteer at a camp like this – and it would look great on their CV too!

So, I’m away for a couple of weeks so no round-ups until I get back, but I’ve scheduled in some great posts while I’m away to keep you company and I’ll be armed in Italy with wifi and an iPad…Happy holidays!

SEN and disability stories you mustn’t miss

The summer holidays may be underway but the silly season for news certainly doesn’t seem to have arrived as far as news and great blogs go. Although, as this is Olympics year, we may miss it altogether. I’m especially pleased as the Olympics brings some old and sorely-missed friends into town to cover it for various news organisations.

In special needs this week, there have been a number of notable stories, including the school exclusions figures. the BBC ran on the angle that there was an 11% drop in exclusions across the boar and, while this is of course welcome news, it’s much more worrying that pupils with statements are nine times more likely to be excluded than a pupil without SEN, a fact that news organisations seem to think is just par for the course. Now remember, this is statemented, not just SEN kids, so these are children who are supposed to have statutory help in place to enable them to achieve. Does this indicate that many are simply n the wrong school environment or that their statements are either inadequate or not being properly implemented? I really hope someone with the right resources (yes, I know, what are resources?) looks into this more closely.

There are also a few great blog posts from Chaos in Kent, Lynsey Mumma Duck and Place2Be, so do check them out. Also, if you’ve read or written something fab this week about special needs, leave the link in the comments for me!

Finally: summer, special needs stories and a teenage birthday

Special Needs JungleAh, so school’s out for pretty much everyone from today..just in time for the summer sunshine to finally show itself.  Although my boys are enjoying the end of their second week of alternately slumping in front of screens or eating everything in the house, interspersed with a bit of warhammer painting or deafening me with electric guitar-playing (this is Son1 and he’s very good, thank goodness)

But today is a special day in our house – it’s the long-awaited dawn of Son2’s teenage years. Summer birthdays always seem the longest to come around and last night, having decided to no longer resist being 13, Son2 decided as it was inevitable, he might as well get really excited about it.

He’s now exploring his iPad (see image for his personal engraving on the back) and newly-boosted collection of Orks as he awaits the arrival of a few school pals for a party.. of some type.. to be decided when they get here. I just have to provide pizza, drinks and be scarce, which I  am more than happy to do.

One thing he won’t be doing is perusing my list of must-read stories from the week and this is a shame, because, if he was twenty years older, he’d enjoy them very much, I’m sure. So, happy holidays to you and Happy Birthday to my brand new teenager!

SEN reform views and other news

Yesterday I spoke on behalf of Family Voice Surrey at the Surrey County Council SEN pathfinder launch in Cobham. In attendance was Stephen Kingdom, a senior DfE official. I took the opportunity to include in my talk the widely-held opinion (outside of government circles, that is) that October is FAR too soon to try to start evaluating any pathfinder activity – most of which isn’t even scheduled to start until September. What, exactly, will they be evaluating, I asked him, when I spoke to him afterwards. He said some government stuff about informing, gradual process etc etc, but I’m not sure he was listening, really. Let’s face it, why should I be any different?

They hold the view that putting it off may mean it doesn’t happen. I disagree. The genie’s out of the bottle now but far, far better to have the ‘unstoppable train’ of reform pause a while to let reality catch up, than rush into something that’ll end up running off the rails because it wasn’t given enough time to lay secure tracks to a sustainable SEN future for the kids who need it.

So, enough train metaphors and on to the week’s stories. My blogging pals have come up trumps this week with some great posts from A Boy with Aspergers, Chaos In Kent, An Aspie in the Family and Emma4Oacs. Lots of other great stuff too, take a look!

Keep out of the rain this weekend and review the week’s special needs stories instead

Schools Out - copyright Tania TirraoroToday is the last day of school for my boys, apart from Founder’s Day, tomorrow and we’re all praying for the weather to be kind as teachers, staff, 400 boys aged 8-18 and their families cram under a vast marquee. I wrote in an early SNJ post about their very first Founder’s day at the school. Since then the school has expanded so I would recommend a cushion to first timers and your do hands sting a little at the end after all the clapping.

Every boy gets an award for something they’ve worked hard at and they all get to troop up to the front – many have never had the chance to succeed at anything before they arrived at the school and their faces beam with pride; it’s very moving. Our patience is rewarded with strawberries and sparkling wine at the end and a chance to mingle with everyone. Son1’s playing in the Jazz Band on the bass so we’ll have to hang around for a bit anyway! In September he starts his GCSE courses. That’ll be a whole other story.

Do enjoy the stories this week, some great posts and interesting news and don’t forget, if you’ve got any old mobiles hanging around, check out my post below on how you can convert them to a meal for a hungry inner-city child.

How NOT to prepare for the autistic child’s camping trip

Son2 is off, after school, on a camping trip with his Year 8 cohort. They will set off to walk to a nearby campsite, pitch tents, eat BBQ, camp overnight and return to school sometime the next day. Sounds fun, you might think, and I do hope it is, because this morning has been a faffing nightmare getting him ready.

The TentSon2 has just started some medication that is already making him feel much less anxious so when he wanted to go to the cinema last night with his brother and cousins who are visiting from New Zealand, it would have been unfair to make him stay and pack his bag. So off he went and we did it for him.

Tent, check, sleeping bag, check, bed roll, check. Two spare sets of clothing, cleverly grouped into outfits and packed in separate plastic bags so he doesn’t have to root around in his rucksack, check. Everything on the kit list was ticked off and my husband and I thought we’d done a pretty marvellous job.

Son2 arrives home late, heads for the shower and tumbles into bed.

This morning, he says, “Did you pack my rucksack? I wanted to do it. What have you put in?” Son2 is notoriously fussy about his clothes and shoes. Husband and I exchange uneasy glances.

Out comes everything from the rucksack and Son2 is, of course, unhappy with our choices. Then he decides his shoes are too small and he most definitely does not want the trainers we have packed for him. I grab Son1’s walking boots, which are most probably too large but Son2 tries them on and decides they’ll be fine to take. So we pack them in a plastic bag and I leave husband to repack the rucksack that now contains completely different sets of colour-coordinated clothing.

Into the car goes his wheeled schoolbag for today, rucksack and daypack. He had already sorted out the daypack before he went to the cinema, containing the important stuff – Haribos, guava juice and a self-heating can of rocket coffee. Then I remember – he needs to pack his medication and I should have given it to the nurse days ago. Bugger! She’s not going to be happy.

It is now 0820 and we live five miles from school, which starts at 0830.

Off we set, only for the hands-free phone to ring minutes later. It’s husband. “Doesn’t he need these walking boots?” he asks. Double bugger! We pull into the Tesco Express car park to await husband with the missing boots. My teeth are grinding and I’m feeling uncomfortably clammy. The boys are sitting with their headphones on in their own worlds.

Husband arrives and, boots onboard, we screech out of the car park and head for school, now unavoidably late as we fight through the Farnham town centre traffic. “Are you sure you can’t stay for a club or prep so I can have more time to work?” I ask Son1, hopefully. “No,” is his uncompromising reply. I sigh and turn up Norah Jones singing about how her heart is drenched in wine. I wish mine was too.

Eventually arriving, I drive across the  campus to the sports hall to deliver the bags and tent, only to come face-to-face with the off-duty nurse who also has a son in Year 8. I mention the missing medication and wince as she tell me how they were at school until seven last night, securely packaging everyone else’s who’d got it there at the allotted time. But, as she is a nice person, she graciously tells me it won’t be a problem, but I still feel like the most disorganised mother on the planet.

Son2 trundles happily, through the drizzle, off to form, because of course, no camping trip is complete without rain. I fight back through the traffic to my home office to bring you this sorry tale of woe. Still, the sons are happy, and that’s the main thing. Isn’t it?

I’m having a spot of surgery in a week’s time. I am strangely looking forward to the general anaesthetic.

Place2Be – the charity that makes a lifetime of difference to children in schools

A while ago, I came across a great charity, working across the country to improve the emotional well-being of children, their families and the whole school community. The Place2Be was established in 1994 in response to increasing concern about the extent and depth of emotional and behavioural difficulties displayed in classrooms and playgrounds.

Today, Jonathan Wood, Place2Be  National Manager, Scotland, tells Special Needs Jungle about their work and why it is so vitally important:

***

Why school-based counselling support works: Place2Be

You are a busy classroom teacher, juggling the demands of a young family at home with a boisterous class of 8 year olds at school. Your class takes a lot of energy to settle down for work each morning – and at each subsequent break throughout the day.

It’s Monday morning and Amy is in tears again, even before the bell has gone. Recently fostered after a placement with her grandparents ended violently, you have to remind yourself that it is only a year since Amy’s mother died from a drugs overdose. If you didn’t, your exasperation might seep out as you comfort her just enough to get her into class.

Once in there, disorder rules. At the heart of it, two boys are baiting each other. One of them, Sam, is not going to back down. You suspect he is somewhere on the autistic spectrum, as yet undiagnosed – that mix of over-sensitivity and bullishness – and his feelings have been hurt. And Amy’s crying again.

The other children have responded to your presence and start to settle down. So that just leaves Sam and Amy and you to deal with.

How do teaching staff cope with extra-curricular demands of this nature? Who offers them support to ride the emotional roller-coaster that whizzes and plummets through the school curriculum on bad and not-so-bad days?

In Place2Be’s experience, most teachers cope by simply carrying on. Support for the emotional impact of children like Sam and Amy can be hard to come by.

Founded in 1994, Place2Be provides a whole-school service, offering therapeutic and emotional support to children and parents, and on-site consultancy formally and informally to teaching staff. We work with 500 schools across the UK. How would we respond in this situation?

We might expect to meet up with this teacher at break or lunchtime and talk through with her how her morning went. We may suggest strategies for her to support Sam, including that he come and see us in Place2Talk, our drop-in, solution-focused self-referral sessions for children (10 minute sessions at break time). We may bring forward Amy’s session with her Place2Be counsellor, recognising that she is not coping well at the moment. We may simply listen to the teacher.

And indeed, Sam did come to the Place2Talk and together we worked out painstakingly and rationally how he might take control of similar situations and not rise to anyone’s bait. And over the next few weeks, Amy played intensively with the doll’s house in the Place2Be room, in which she installed dolls representing herself, her mum and her grandparents. There were fights and tears, but it wasn’t until a new set of parents moved into a room in the house that Amy’s mum and grandparents could move out, leaving her there. Amy’s foster parents have since applied to adopt Amy, and the tears before class have stopped.

Teachers know that some children arrive at school not ready to learn. But knowing that is not the same as having the time, the resources or even the skills to manage all the issues that children can bring.  This is where a service like Place2Be can make the difference by attempting to provide that responsive space for schools at every level in a direct and non-stigmatising way.

Find Place2Be here

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

Fantastic week for awards – and some special needs news you can use too!

So, er, I’ll just mention it one more time – Special Needs Jungle WON the CHANGE award in the BritMums Brilliance in Blogging awards last Friday evening. Wowser! I’ve never won anything before – certainly nothing big cheese like this. I spent the first few mornings waking up saying.. I won!.. in an incredulous sort of way. Thanks to BritMums and to everyone who passed on their congratulations.

I’ve been smiling all week – even more so because the day after,  Son1 won the Chairman’s Player of Year award at his football clubs. This is even more fantastic than anything I’ve won because five years ago, he would have spent most the a match sulking on the sidelines and now he’s the most valuable player – all thanks to the fact he’s worked hard at his social skills at his specialist school. Well done Luca!

Anyway, on to the week’s stories. Special Needs Jungle’s had some important posts this week – the first from Charlie Mead, child psychologist about Children in Care. Thanks to all who shared it. And my post on Wednesday  – an open letter to Sarah Teather has had a lot of positive reaction, though nothing, predictably from the recipient herself. But there’s still time, Miss T, to address those issues raised.

Great posts too from Claire Louise at A Boy With Asperger’s and from Kat’s Cafe and Looking for Blue Sky, lovely ladies all. Tomorrow we’ll have Claire’s write up of the free schools event she went to for SNJ. She’s a cracker, our Claire and it was fab to finally meet her at BritMums. We did a lot of cackling. Great also to meet Lyndsay and Gemma who both have fab blogs too.

Catch up on some fab Special Needs news and blogs from this week

So, later today I am heading out for the BritMums bloggers conference and awards. As you know, Special Needs Jungle is a finalist in the ‘Change’ category. As something of a niche subject, I’m really not expecting to win – reaching the finals, thanks to all your votes, was such a brilliant feeling to know that you like the blog enough to make the effort to vote and I’m very grateful to everyone who did. If you’re going to the conference, please say hello to me!

Last week’s SEN conference has given me lots of material for posts – and I’m not finished yet. Next week I’ll be bringing you a large chunk of Charlie Mead’s talk about the state of care for Looked after Children. It’s something we should all care about. Also, if you haven’t already seen it, check out my post (below) about when we went to see Temple Grandin speak and my view on the SEN pathfinder so far and why I think the timetable is still too rushed.

Have a great weekend – may the sun peek out on us at some point!

 

Inspired: Son2 meets Dr Temple Grandin.

Last night we had the privilege of going to see Dr Temple Grandin, the autistic woman famous for inventing humane animal handling systems. Dr Grandin is also a renowned expert on autism and Son2 was very keen to hear her speak.

So off we went to Reading, but by the time we had arrived and found the Town Hall, Son2 had become overloaded, fallen into intractable silence and could not be persuaded to eat or drink anything. This was not looking good and I wondered if we should just go home. But I had only booked because he had wanted to go and I knew hearing Dr Grandin would be important for him.

Dr Temple Grandin & Son2

Dr Temple Grandin & Son2

There was a while to wait before the show started and I offered Son2 some cash to see if he wanted to get anything in the cafe. Off he set, with me trailing behing him. His eyes alighted outside the auditorium on Dr Grandin signing books. He said nothing and we went down to the cafe where he could find nothing to his liking. Back we came and he slowed down at the book buying table. I asked him if he would like a book and to get it signed. He would.

The queue had diminished and we got the last book. Son2 met Dr Grandin for a brief moment as she signed his name and hers and he went back to his seat clutching his signed copy. He managed a small drink and a bite of his sandwich. I knew that as soon as she started talking he would be transfixed and so he was, for a full hour.

Dr Grandin spoke about how important it was to engage young people with autism, for them to participate through common, shared interests and how to teach them bottom up, not top down. By this she meant using specific examples to teach concepts, to teach the child according to the way he learns. She said it was also particularly important to discover the root cause of a child’s problems, whether it was biological, sensory, fear/anxiety or a hidden medical problem. It was important to give an instruction for the type of behaviour you want, rather than a negative instruction.

Dr Grandin said that much more research needed to be done into sensory issues, which Son2, in particular, is very sensitive to. She also pointed to how so many young people with autism were without basic skills and how fifties-style parenting, emphasising behavioural expectations by way of routine, benefitted young people with an ASD.

Her advice to teenagers with ASDs was that if you find it difficult to interact with people socially, then impress them with what you can do – build up a portfolio of the things you are good at and play to your strengths because talent gets respect. In this way, you can find a place for yourself in society.

Dr Grandin has a new book out, the same one that Son2 has today taken to school. It’s called Different… Not Less: Inspiring Stories of Achievement and Successful Employment from Adults with Autism, Asperger’s, and ADHD.

We didn’t stay for the Question and Answer session after the break – Son2’s attention was exhausted and so was he. But he took a lot from it, I could tell. Dr Grandin is very similar in her thought processes to him and I believe he was inspired and comforted to realise that so many people had come to listen to someone just like him.

Before we left, I asked him if he’d like his picture taken with Dr Grandin – because I knew he would. I explained to Dr Grandin that Son2 now needed to go home but he would really love his picture with her. “We’d better do it right now, then!” she said and Son2 quickly went to stand at her side. It’s not a great quality image, but I know it’s one Son2 will treasure.

On the way home, he was ready to eat his sandwich and have a proper drink. It hadn’t been an easy trip, but I know that he was satisfied and that’s enough for me.

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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From day one, my son suffered from a bloating and stomach pains, which meant for the first two years of his life he only cat napped for a couple of hours at a time; this extreme tiredness felt like torture. When he was almost 10 months old, a doctor suspected he might have Hirschsprung’s diseasewhich led to him under-going a bowel biopsy and a barium x-ray, results of which thankfully were both negative, but the experience had taken its toll and left him suffering further distress.

He was referred to a dietician when he was 26 months old who suggested I put him on a wheat free, gluten free diet. Less wheat did help a little with the bloating; after a while I put him back on a normal diet reducing his wheat intake. My son had terrible outbursts due to frustration and confusion, head banging on floor, biting, hitting, grabbing and hurling anything he could reach.

His speech was poor; by 19 months he had four words and by 24 months it had increased to around eight. His hearing tests were all good. He used to point for things he wanted, or led me by the hand. His speech started to improve slowly from the age of three. He also had difficulties with his gross motor skills (balance, stepping over objects, hoping, running), an occupational assessment put this down to poor gross motor skills and a stiff gait in his left leg. Mother and toddler groups were a nightmare due to his aggression – he was like a whirlwind of destruction which, of course, resulted in complaints from other parents. This continued on into nursery, where he was put on School Action Plus.

Home life became difficult, in so many ways. His sister, four years older, struggled with the constant crying and meltdowns from her brother, other family members struggled to understand and put his behaviour down to terrible 2,3,4’s, some friends stopped seeing us as they didn’t want him playing with their children due to his aggression. Hairline cracks within my marriage grew into a canyon and I struggled to know what to do for the best.

My son was initially diagnosed with speech and language delay. He first attended a mainstream school with a speech and language unit attached, after only one week he had been permanently excluded on grounds of health and safety the other children. Another smaller mainstream school offered to take him, they even helped to get his statement of needs relooked at, and he was given a full-time one to one teaching assistant. However, after almost four weeks and several incidences, the school admitted they were also unable to cope.

Another doctor assessed my son, she recognised that he had autistic tendencies combined with speech disorder. His statement was adjusted to better meet his needs and then began the search for another school. During that time he remained at home.

So many times I was told, “Your son’s not autistic he gives eye contact”. Other times I was asked, “Does that mean your son is really intelligent?” But more difficult to hear was, “He’s just strong willed, a good smack on the bottom will sort him” A local special needs school was found, actually it was a unit attached to an EBD (emotional behaviour disorder) school. With only five children in the class, one teacher and two assistants, I hoped things would work out for him, it certainly looked that way to begin with.

Then the calls started… “Um, it’s your son’s school here, he’s not having a good day; can you come and get him?” This went on and on, not only was this very negative and disruptive for my son, I repeatedly had to take more time off work. I also saw an increase in his meltdowns, and unfortunately the copying from other boys of inappropriate words (such a the F word). A new term, with new staff, resulted in an incident and once again he was excluded.

After an emergency review meeting, which raised areas of failings by the school, we were back to square one. After three separate school exclusions from three different types of schools, I had to give up my job for a third time. He remained at home for eight months whilst being rejected by many schools. The autistic specific schools we viewed didn’t seem suitable, as his autism was mild. Other schools turned him down because he was unable to access the curriculum, and many schools rejected him because of his aggression.

After a CAMHS report, a Meath School private disability assessment, a battle with the County Council SEN department regarding their failings, an Ombudsman investigation, a newspaper article, some campaigns involving letters to my local MP, amongst others, eventually a new school was found, but is ‘out of county’.

Where are we today now that my son is nine years old?… My son has a condition called Pathological Demand Avoidance Syndrome, which is increasingly recognised as part of the autistic spectrum. He is mentally five years old, with Speech Language Communication Disorder and Dyslexic. He is still unable to access the curriculum, struggles to comprehend simple requests, has no concept of time, suffers from IBS and struggles to understand social play.

He currently goes to a special needs boy’s school who have some experience with ASD, EBD, ADHD, ODD etc. But more importantly, they have a flexible manner with an open-minded approach in a nurturing, calm and inclusive environment. To-date, both my son and his school teachers/carers are coping well and learning from each other every day. But it isn’t plain sailing, as his school is in another county and because it’s almost an hours drive away.

There were problems with travelling back and forth daily, so he is currently weekly boarding at the school, the same as the majority of the other boys. There has been much heartache for me, letting go and trusting in others to care for and understand my beautiful boy, although it now helps being able to telephone him every evening. I also worry about the possible increase in his anxiety levels due to separation from the family.

There certainly have been some positives, my daughter is calmer and happier and we have respite time together during the week and it has been lovely to be able to focus 100% on her for the first time in years. Although the children’s father and I have separated, we remain living near each other, have become good friends and he has a wonderful relationship with his children and is fully involved in their lives. We both feel that our son has given us the opportunity to look at life with huge appreciation for the things that many people take for granted.

Our son has been our teacher, we have learned the art of patience, acceptance, to be open-minded, to look closely at ourselves and how to interact in a new way with both our children. My son helped me to realise who I am and what I am capable of; he gave me my voice, he helped me find my inner spirit, strength and passion, and has made me a better person. I am a strong advocate for autism and am in relentless pursuit to raise awareness about PDA.

What can PDA look like…

  • Panic attacks /challenging behaviour:  

Aggressive outbursts, kicking, biting, spitting, hitting, swearing, screaming, throwing things (fight or flight, often with no obvious triggers)

  • Communication abnormalities:  

Echolalic speech, literal understanding of speech, neologisms (using idiosyncratic words instead of conventional speech), language disorder to varying degrees, inappropriate speech for social context

  • Social communication:

Inappropriate play, lack of turn taking and difficulty understanding social rules and requests, difficulties knowing how to react to another person’s behaviour, difficulties accepting that there may be other perspectives, not just a single perspective, limited gesturing

  • Rigid thinking
  • Accumulative levels of stress
  • High anxiety and low self esteem
  • Sensory issues / overstimulation, materials, noise, sunlight, temperature, food

Early History of PDA Elizabeth Newson first began to look at PDA as a specific syndrome in the 1980′s when certain children referred to the Child Development Clinic at Nottingham University appeared to display and share many of the same characteristics. These children had often been referred because they seemed to show many autistic traits but were not typical in their presentation like those with classical autism or Asperger Syndrome because of the child’s imaginative ability, especially in non-echolalic role play; often the child seemed unusually sociable, though in an “odd” way, and language development was atypical of autism and less pragmatically disordered than in Asperger’s syndrome. They had often been labelled as ‘Atypical Autism‘ or Pervasive Developmental Disorder – Not Otherwise Specified. Both of these terms were felt by parents to be unhelpful. She wrote up her findings in several papers based on increasingly larger groups of children. This culminated in a proposal for PDA being recognised as a separate syndrome within the Pervasive Developmental Disorders in 2003 published in the Archives of Diseases in Childhood.

http://www.pdacontact.org.uk/ | http://www.facebook.com/groups/7165353156/  | http://adc.bmj.com/content/88/7/595.full | http://advocate4pda.wordpress.com/2012/02/05/wikipedia-for-pda/  | http://www.youtube.com/watch?v=QwtkzBoY01M

Above is a photo of my wonderful son, and below, a photo taken at the National Autistic Society Spectrum Ball, where Tony Hadley (Spandau Ballet) kindly agreed to have pictures taken to help raise awareness for children with Pathological Demand Avoidance Syndrome.

Food for thought: some great special needs posts and news this week

It feels a bit surreal, being Friday already. Long weekends do that, don’t they? And yet a whole week must have passed because there have been all these great stories. It’s been a great week for thoughtful special needs posts too.

Finally, don’t forget there are still some parent bursary places left for the SEN conference in Newbury next weekend. See the link in the list below. If you come, make sure you say hello!

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.

Research, articles & opinion – special needs news from this week

Tania TirraoroAn incredibly busy week, so I missed my Wednesday post as I was in Brussels to speak at a EURORDIS workshop on social media for rare disease organisations. I was describing how we set up the social media for DysNet, the new Limb Difference Network for which I am PR & Community Manager.

It was a really interesting and exhilarating day, hearing from other organisations such as Bee For Battens, a charity set up by a family who are dealing with the loss of one child and the illness of another with Batten’s Disease. As is so often the case, such terrible adversity and tragedy prompts some people not to hide away but to reach out and help others in a similar position.

We hear so often today about greedy bankers, self-interested politicians and welfare cuts to the most vulnerable.  We hear nowhere near enough about people who, despite their own difficulties, put their energies into offering care and support to those in need. These are the inspirational people that newspapers should highlight on a daily basis – it would, I believe, have a positive effect on the nation as a whole.

And so… I’ve been busy, but not too busy for the ever-popular Friday round-up. Please do read my post about launching DysNet and another inspirational person, Geoff Adams-Spink, if you missed it earlier in the week. Enjoy the sun!

The benefits of ‘Floortime’ for autism – and win tickets to a Floortime workshop!

An US company that offers a unique therapy to help parents and professionals communicate better with children with autism/special needs, is offering London-based workshops in the the technique. Floortime is a specific therapeutic technique based on the Developmental Individual Difference Relationship Model (DIR) developed in the 1980s by Dr. Stanley Greenspan. The 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. I had never heard of Floortime therapy before, but some basic research revealed a lot of positive feedback as a well-established technique including some interesting evidence-based research.

Click image for larger view

Jake Greenspan, the son of Dr Greenspan, has generously offered Special Needs Jungle one ticket to give away to a parent and a discounted ticket for a professional. Here, he explains more about Floortime: “The goal of Floortime is to help the child reach developmental milestones that contribute to emotional and intellectual growth such as interest in the world, relating to others, complex communication and emotional thinking. If your child has difficulties relating, communicating, or socialising, or if strong emotions like anxiety, frustration, or anger trigger tantrums and meltdowns, Floortime can help. Instead of trying to address every symptom and teach a child each missing skill, Floortime focuses on strengthening the core of the problem.  For example, when a child develops better communication and expressive language, behaviour improves.  When they learn to think and problem solve, they experience less frustration.  To help children do this they have to enjoy communicating and want to push themselves.  Floortime focuses on developing a close positive relationship and challenging children within fun activities of their choice so they want to succeed. By identifying and improving the cause of the symptoms children want to be more related, communicative, and logical.  Their behaviour improves because they are happier and better thinkers.   The relationships they build become the foundation for all future friendships. For children to be successful in school and life, they need to learn to think on their own. Parents – Learn to help your child think and learn at home during everyday activities and fun play-based sessions.  Improve their attention, communication, and behavior. Professionals- Learn to do Floortime and integrate its principals into your own curriculum in a Speech, OT, or Special Education setting. Join us on the 23rd or the 24th June at Morris Lecture Theatre, St. Bartholomew Hospital London.   Please visit our website at this link for information on research, pricing, and registration.

The Child may have a disorder or a set of problems, but he is not the disorder.  He is a human being with real feelings, real desires, and real wishes.

Dr. Stanley Greenspan

How to enter to win a free parent or discounted professional ticket:

Simply email me (Tania) at info@specialneedsjungle.comwith Floortime and either ‘parent’ or professional’ in the subject line. Parent tickets are usually £50 and professional tickets are £120 but we can offer one for just £99. The proceeds of the professional ticket are being donated to More House School in Surrey. You can enter up to 25th May

Great special needs stories, blogs and a cute dog too

For the first time this week, I’m alone in the house, apart from Leo the Labradoodle, currently sulking because he had to have a bath after rolling in something revolting. I haven’t told him yet it’s his anti-flea treatment day too, which he’s also not keen on. Everyone but me has had the flu (man flu of course). As a registered carer, my GP gives me a free flu jab so I have managed to avoid it. This is just as well as I’m flat out preparing for the main launch of  DysNet, the new network for people affected by limb differences for which I’m PR & Community Manager.

And so, exhausted, I bring you my weekly round up of recommended special needs stories and blogs that I’ve seen this week. It just remains to say a huge thanks to all who voted for me in the BritMums awards, because I’m now going to have to find a nice frock as SNJ has been chosen as a finalist!

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  

Advocates For Children – a FREE SEN legal advocacy charity.

The world of special needs is, I have discovered, populated with extraordinary people  – both those who care and do their best for their children and professionals who go the extra mile to provide whatever help they can.

One such lady is Gloria Vessel, a barrister who has for many years carried out pro bono work for families affected by disabilities and SEN. In a decade of helping families at the SEN Tribunal, Gloria has never lost a case.  However, it became clear that she could not take on all the children whose parents were asking for her help so she founded the charity, Advocates for Children. Today, Gloria has written about the charity and its work exclusively for Special Needs Jungle.

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For parents of children with disabilities it really is a jungle out there, especially when it comes to getting the right school, or the right schooling for your child. Parents are faced with a bewildering mass of Codes of Practice, deadlines, and the ever present prospect of having to take your case to a Special Educational Needs Tribunal. Advocates for Children is here to help.  We are a relatively new charity; only three years old.  Our volunteer Advocates help children with disabilities and life-limiting conditions aged 4 – 16 with problems at school.  Our services are free.

Advocates For ChildrenProblems we deal with include getting the right educational support for a child at school, getting the right school for the child,  giving parents advice on where they are going with their child’s case, or addressing the issues of bullying or abuse of children. We believe that when you are helping children one size does not fit all.  No two cases are ever the same, and we know that every child and every family are unique, so we devise help to fit the needs of each family and each child.

Your child is never just a case number to us.  Your child is a unique and special individual that we are privileged to advocate for. It is our policy to see each child that we Advocate for, so that we know best how to help them.  Our central focus is always what is best for the child. We also give advice to parents over the telephone, where they simply have a query that they need some help with.

For many parents we can resolve a problem with one call. If parents want to be legally represented, we can help you to find the right solicitor, and to advise you on what you need to do.  In certain circumstances, we would represent our own clients at a Special Educational Needs Tribunal, however we try as hard as we can to avoid a Tribunal if that is possible. The law is a vital tool for parents to be able to get help for their child, but we urge parents not to see it as a first resort, or as the only resort. So often parents will ring asking about Tribunals, or they are even be on their way to Tribunal, without ever having been told, or having been able to find out, what they actually need to do to give themselves the best chance of success at a Tribunal, or even understanding exactly what is involved.  That is a dangerous position to be in.  Knowledge is power, so we help to give you that knowledge.

It is also amazing how many parents have been told that they need to go to Tribunal without ever having really met with the Local Education Authority to discuss their child’s case.  We can review a case and see where there are areas of agreement, as well as disagreement, and see if a solution can be arrived at by negotiation and not by immediate legal action.  That benefits both sides and benefits the child.  And, if it comes to a Tribunal, the parents will be much better prepared, and will know what they need to focus on.  It really is good to talk! A Tribunal is a legal procedure and the evidence you put forward is vital to your case.  We advise you on what the evidence is that you need.  You know your child inside out, but a Tribunal Panel does not.  They have to decide on what your child is all about by the written evidence in front of them.  So, you need your written evidence to help you make your case.  Of course you can talk about your child, but you need written evidence too.

As a barrister I have the greatest respect for and faith in the legal process, but I also know that the better informed parents are the better equipped they are to make all-important decisions for their children before that process begins. Advocates for Children believes in the dignity of the child.  We champion the legal and human rights of the children we Advocate for and our watchwords are ‘Listen, Respect, Care’. Our Trustees are all Mums and Grandmums who really understand what our clients are facing and that is what we feel is our greatest strength, as it drives all that we do for these special children. Our Mission Statement is; To enable children with disabilities to have the opportunity to fulfil their true potential and have their chance to shine. We are proud to do just that.

http://advocatesforchildren.org.uk/

Special needs news you can use from the last week

Aah, the boys finally returned to school mid-week. They’ve been off so long I’d almost forgotten the way there. I’m not sure which I prefer – the peace and quiet of working undisturbed by regular requests for food against the lack of need to do the stressful school run…

There have been three SNJ posts this week, including Son2 in his fetching lycra Body Sox (see link below), as well as lots of interesting special needs news stories. Check them out below. And, if you haven’t voted for Special Needs Jungle in the BritMums awards yet (see link badge upper left), there’s still time. You know it makes sense.

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…

Managing the relationship between children with autism and computers

Adele Devine is a teacher at Freemantles School for young people with autism in Surrey. She, along with her husband, have created a range of award-winning software for special needs, SEN Assist. She’s writing here on the Special Needs Jungle blog about how to make sure that children with autism are getting real benefits from computer use. Don’t miss Adele’s, 10 Tips for developing a healthy relationship with IT, included in the article.

Technology is motivating for most children, but to those with autism it’s more. The computer can become a safe place – it’s predictable, it’s got every motivator on the planet, it’s a world behind a screen that can involve and include.

Once they find this safe haven is it any wonder that the child with autism wants to be there every minute of the day? They might seem to become manageable and happy rather than ‘bouncing between the walls’, but we must look at what they are actually achieving on the computer.

 Is the IT including or isolating, educating or babysitting?

Children with autism benefit from structure. If left to their own devices they might be on the computer all day and do nothing, but click between ‘youtube’ videos or sound files. So should we stop them? No, but we must to take control early on and structure their time. This way we will help them to develop a healthy relationship.

Temple Grandin (author and professor, herself autistic) believes that without “the gifts of autism” there would probably be no NASA or IT industry and most autism experts would agree. Bill Gates, founder of Microsoft (widely believed to have Asperger’s syndrome) demonstrates the possibilities if the computer ‘obsession’ is correctly managed.

There is also the ‘dark side’ of this relationship.

The computer can reduce social interaction, nurture obsessive behaviour or even misdirect skills towards illegal computer hacking. The ongoing case of hacker Gary Mckinnon, who faces possible extradition rings warning bells.

His mother Janis Sharpe says, “When Gary was nine, we bought a primitive Atari. He would beg me not to send him out to play so he could use it. We wanted him to mix more but we didn’t want to deny him the information, pleasure and security computers gave him. They were an outlet for him to be himself, and that boosted his self-esteem.” 

So what should we do?

Richard Mills, director of research at the charity Research Autism, believes the answer is complicated: “The computer age totally changes the world of autism. Things are instant, and they are unregulated. We see tremendous advantages to this if it is properly managed – and huge pitfalls if it isn’t.”

Support for parents and teachers ‘managing’ this situation.

SENAssist software was created by specialist teachers to help develop structure from an early stage. It’s based on autism specific training, and years of practical teaching experience. SENAssist was created to be something to switch on and see work without having to know the theory first. By using ‘autism friendly’ structures and motivators from the start we secure the foundations for a positive relationship.

So what makes SENAssist ‘Autism Friendly?’ 

Animated writing with associated symbols

Visual and repetitive: Children with autism are often visual learners. The stories and activities have symbols that associate with the words. The writing is highlighted as the words are read. The first 100 high frequency words are repetitively used for the stories and activities.

SEN Assist activities are based on language activities used by speech therapists. The resources are based on PECs.

Speech Therapy: Activities are based on speech therapy, helping teach prepositions, pronouns and sequencing. Resources are designed to enable pre verbal children to answer questions.

Praise is also varied to extend the vocabulary.

Individual motivators: The first thing the child must do is choose their motivating character. There are 48 to choose from – pirates, dinosaurs, trains etc. This motivator stays on the screen throughout cheering them on.  

The work system at the side will show how many tasks they have left to complete.

Work systems and token boards: A work system shows the child how much they must do creating a visual structure. The use of ticks and crosses on token boards is deliberate – they learn to accept seeing a cross when it is introduced on the computer.

Self esteem: It’s important to set a level to suit the child. We must set them up to succeed and introduce challenge gradually.

10 Tips for developing a healthy relationship with IT

  1. Have the computer in a communal area.
  2. Have ‘computer time’ so it becomes one of many daily activities.
  3. Establish the idea of turn taking early on.
  4. Encourage a range of different activities on the computer.
  5. As skills develop use a work system to structure computer time.
  6. Give typing a function by making their name the computer login.
  7. Avoid programs or Apps that speak for the child before they are 6.
  8. Try ‘switch’ programs for teaching cause and effect.
  9. Try adapting the keyboard or getting a one button mouse.
  10. Use visual count downs and stick to the ‘rules’.

The Education Resource Awards: SEN Assist wins the award for ‘Best Special Education Resource with ICT’.

SEN Assist has recently won the award for ‘Best Special Education Resource with ICT’ in The Education Resource Awards.  The judges commented that “The Fairy Tales was an inclusive, interactive product that allows a wide range of students to improve their knowledge of high-frequency words. With logical lay-out, clear instructions and motivating images, the product will help to engage the learner. Additional printable activities also help to ensure that the teacher can offer further support”

You find find these innovative products at http://www.senassist.com/

Adele has kindly donated a copy of their Early Shakespeare software to More House School, an independent specialist school for boys with SpLDs and ASDs, attended by my sons.

 

TGIF: And a chance to see the week’s special needs news & views

Tania TirraoroThis week we’ve had sunshine, showers, hail as big as marbles and thunder and lightning… it must be April. I’ve whipped up some special needs stories and blogs that might have slipped your notice as you get over all that Easter chocolate.

As you read this over the weekend, I’ll be at a spa hotel with my husband, enjoying our carer’s break, leaving the boys and the dog in the capable hands of my mother-in-law. Have been instructed to leave my iPad behind and relax… if you spot me online before Monday, please tell me to log off immediately.

Cracking special needs stories for the Easter weekend

Happy Easter! Why not spend a few minutes this long weekend to catch up on some of the past week’s special needs and disability stories?

Here’s my pick:

Got one of your own not listed? Why not add it in the comments…

World Autism Day April 2

This is from the United Nations about World Autism Day:

The annual observance of World Autism Awareness Day should spur global action to combat the “unacceptable” discrimination, abuse and isolation that people with the disorder and their loved ones face, according to Secretary-General Ban Ki-moon.
“Autism is not limited to a single region or a country; it is a worldwide challenge that requires global action,” states Mr. Ban’s message for the Day, observed annually on 2 April. “People with autism are equal citizens who should enjoy all human rights and fundamental freedoms.”

In December 2007, the United Nations General Assembly adopted a resolution declaring 2 April as World Autism Awareness Day in an effort to draw attention to a pervasive disorder that affects tens of millions around the globe. Autism is characterized by varying degrees of impairment in communication skills and social interactions and in restricted, repetitive patterns of behaviour.

In his message, Mr. Ban notes that although developmental disabilities such as autism begin in childhood, they persist throughout a person’s life.

“Our work with and for people with autism should not be limited to early identification and treatment; it should include therapies, educational plans and other steps that lead us towards sustained, lifelong engagement,” he states. “Reaching out to people with autism spectrum disorders requires global political commitment and better international cooperation, especially in sharing good practices.”

He stresses the need for greater investments in the social, education and labour sectors, since developed and developing countries alike still need to improve their capacities to address the unique needs of people with autism and cultivate their talents.

“We also need to promote further research, train non-specialized care providers, and enable the autism community to more easily navigate care systems to obtain services that can support and mainstream individuals with autism,” the Secretary-General says in his message.

Today in New York, Vienna and Geneva, the UN Postal Administration (UNPA) released six commemorative postage stamps and two collectible envelopes dedicated to autism awareness, with images created by artists who have been diagnosed with autism.

The stamps will send a “powerful message to people around the world that talent and creativity live inside all of us,” said Mr. Ban.

The UN is the only organization in the world which is neither a country nor a territory that is permitted to issue postage stamps. It is the only postal authority to issue stamps in three different currencies – the United States dollar, the Swiss franc and the euro.

UNPA’s chief, David Failor, told a news conference in New York that the selection process enabled the agency to discover the many hidden talents that people diagnosed with autism have.

“Probably the best part of the process, that we learned, is the talents that some of these people have and working with their families and their relatives and their supporters, and what a great network of people that there is around the world that are really passionate about the subject and want to help raise awareness about it,” he said.

UNPA originally intended to pick three designs to feature on each of the three denominations that it issues stamps for. However, the artwork received was so good that it decided to feature eight designs from among the 200 different pieces of artwork it received.

The stamps will go on sale in New York, Vienna and Geneva, beginning on Monday.