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!

Catch your kids being good with help from Maya Angelou

Tania writes:

“Catch them being good” is the oft-repeated advice to help encourage positive behaviour in children. And it’s good advice. But when your child has a behavioural disorder such as ADHD or Oppositional Defiance Disorder, it can be very hard to do.

For one, you are probably on your last nerve and your child seems to be determined to get on it. For another, you probably feel that you’ve tried all the ‘good advice’ and your child is resistant to all of it.

But, as the parent of two, now teenage, boys both of whom have Asperger Syndrome and one with ADHD and the other ADD, I would urge any parent in this position to keep trying with this particular piece of advice, even if you have to do it, at times, through gritted teeth.

Angelou quote 1It’s also difficult to remember, especially when you’re exhausted and the mere sight of the source of your angst, little Jane or Johnny, can make your stress levels soar. You’re constantly on the edge, waiting for the next crisis to blow-up. Parenting can feel like fire-fighting, with little time for fun.

Being a parent/carer of a child with special needs can be like being in a battle zone with other parents of ‘regular children’ sitting on the sidelines tut-tutting and always ready to tell you your tactics are all wrong.

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”  Maya Angelou

The above quote by American writer, Dr Maya Angelou, is what ‘Catching them being good’ for children with behavioural issues is about. It’s not the words you use or the action you praise, it’s about the self-esteem you are building in your child by doing it.

These children may look like nothing bothers them but you would be very wrong to think that. Every harsh word, brush-off, dressing down and punishment is keenly felt as rejection and the constant message that they are bad, unwanted and not worth loving.

So how do you do it? How do you step outside your own heart-ache, despair and sense of parental failure to build up the self-esteem of the source of your stress?

Here are a few tips that worked for us. They may work for you, they may not, but watchfulness will give you clues as to what does work for your child. You have to build on this and not give up. Of course I am not a child psychologist, I’m a parent, like you, and so I am speaking from my own direct experience.

1. Make a list of your child’s difficult behaviours. This may include being super-fast to anger, screaming, hurting other siblings/children, being unable to sit still at the table, not responding when spoken to, refusing to wash or go to bed or walk safely outside etc. Making a list when you are sitting quietly and calmly can also help you begin to identify triggers for particular behaviours.

2. Now you have the list in your head, you know what to look out for. So, when your child has sat at the table for even five minutes, praise them. It’s tempting to ignore it while they’re being good in case mentioning it sets them off, but this is a long process and you will both learn as you go along. “It’s so nice to see you sitting in your seat, it makes me really enjoy being with you at dinner time.”

Angelou quote 2See, this is not just, “Well done for sitting still” which really means nothing. You are, instead identifying the positive behaviour and backing it up with a positive effect it has had.

Another scenario: If you have identified some potential triggers from your list and you realise such a situation is about to arise, don’t wait for it to happen and then react. Step in with your praise first.

Perhaps your child finds not being first in the queue really hard, or not winning on Sports Day overly distressing (both experienced by Son1). Just ahead of time, say to your child that you understand that they find not being first really tough to cope with and you will be very impressed if they can hold it together if the worst happens.

So here, you are validating their feelings so they know it’s okay to feel bad if something doesn’t go as they planned, but you are giving them another option for a reaction. Personally, in this situation, I would also offer a small reward.

If they don’t manage to hold it together, console them rather than reprimand them. I know that Son1 had no confidence that he could control this overwhelming need for being first, but by praising each small step and helping him see that he had done the best he could, helped him to eventually overcome it.

“I did then what I knew how to do. Now that I know better, I do better.” Maya Angelou

Don’t give them mountains to climb though, praise small positive behaviours and begin to build up confidence.

Will it work first time? Maybe, maybe not, but don’t give up. Because :

  1. Your child will begin to see that you understand what makes them tick and this will increase trust.
  2. You will begin to feel more in control because instead of throwing up your hands and wondering WHY s/he does this, you will know and be in a position to help.
  3. Eventually your child will begin to see that they have a choice over how they react to situations. This is a huge skill and something many adults don’t even know.

angelou quote 3“Nothing will work unless you do.” Maya Angelou

So, it’s not a quick fix, by any means. But my child was worth investing the effort in. From being the recipient of behaviour charts in reception, alienating other children and being, at times, uncontrollable, Son1, now 15, is in one month’s time joining a school World Challenge expedition to Tanzania to climb Kilimanjaro and  carry out project work.

I am immensely proud of him and the way he has been enabled to work out many of his difficulties with the help of his Dad, myself and his specialist school.

I hope this might help you with your child. Or maybe you have some tips of your own that you could share?

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

A personal take on depression: Would you recognise it in your child?

Tania writes

It’s Depression Awareness Week, although with the state of the economy and the weather, it wouldn’t surprise me if most of the country was painfully aware of feeling a bit in the dumps.

Ah, see what I did there? Of course, there’s a difference to being a bit blue and being clinically depressed, and for parents of young adults, teenagers and even younger children, it is very important to know the difference.

For example, what is the difference between your child just having a bad day, or your teen often being irritable or secretive because that’s all part of hormones and growing up, and the onset of something more intractable that will require careful attention and treatment?

Granddad

Granddad

I was diagnosed with clinical depression at the age of 16, although I had always been an anxious child due to an often uncertain home-life. For me, I can trace the true onset of major depression back to the death of my beloved grandfather, who suffered an unexpected and fatal heart attack in front of me when I was just 12.

The adults were allowed to grieve; I was told to ‘put it behind me’, although how I was expected to have the skills to get over the shocking death of the only male constant in my life is beyond me. My, now late, mother, many years later, told me that, in retrospect, she regretted the way she had handled it, but in fairness, it was 1980, and things were different then.

That evening, I had to call the ambulance for my gran and explain what had happened. I was staying with them over February half-term, while my sister was at our Dad’s house.

The trauma of it still revisits me though, even now after adult therapy. It’s still raw, 33 years later. It makes you less able to cope with adversity in a healthy way. The detail is still etched on my mind. It changed me, irrevocably.

Today, I’m great in a crisis, but I pay for it afterwards – a delayed reaction. I’m ever-vigilant, the fight or flight response never far from the surface. It’s not an easy way to live.

Some Shocking Statistics*

  • 1 in 10 children and young people aged 5 – 16 suffer from a diagnosable mental health disorder – that is around three children in every class.
  • Between 1 in every 12 and 1 in 15 children and young people deliberately self-harm  and around 25,000 are admitted to hospital every year due to the severity of their injuries.
  • More than half of all adults with mental health problems were diagnosed in childhood. Less than half were treated appropriately at the time.

Depression can often be part of illness

Anxiety and depression are also features of Ehlers Danlos Syndrome, with which both Son2 and I have now been diagnosed, so I was predisposed, in any case.

Son2 hasn’t had any trauma, but with EDS and Asperger’s it was almost a dead-on cert that he would be affected. He has acute anxiety problems, but because of my experiences, I knew what to look for and he is receiving treatment. It won’t ‘fix’ him, but it may help give him coping skills.

Son1, who also has ASD, has anxiety issues too. On the face of it, he looks like he’s coping well with help from his specialist school, but I know it’s still there, waiting to trip him up and so parental vigilance is needed.

Luckily for both of them, their father is the ultimate laid-back Dad (or in their speak, “soft as a pillow”), so they have a great male role model and a close-knit family. Even that, I know, is not always enough.

This is the first time I’ve ever written about my own depression and it isn’t easy. I’ve been embarrassed, not wanting to show weakness. I can barely utter the words ‘mental illness’ in relation to myself. But just recently, since I’ve been ill, I’ve had to do a lot of reassessing. I expect I have felt the same way teenagers feel when they don’t want to admit they are depressed or that there is anything bothering them at all.

Just because your child or young person hasn’t suffered a huge trauma such as family break-up or bereavement does not mean they are not at risk of mental illness. Lack of confidence, being bullied, poor body image, difficulties at school can all be factors.

And that’s not even taking into account any special needs they may have such as Asperger’s, dyslexia or other learning problems that can affect self-esteem. Or they may just be genetically predisposed to it, especially if you or their other parent are affected.

young minds logoAs a parent, you need to know what you’re looking for and Young Minds, the mental health charity for young people, have lots of resources on their site for parents and for young people themselves. Take a look, even if you don’t think your child has a problem. Parents are often the last to know so knowledge is power. There is also a section for teachers on recognising and helping young people with mental health problems.

The usual NHS route for young people with mental health problems is via your GP and then to CAMHS, the Child and Adolescent Mental Health Service, but as you can see from the comments in this post that is a very variable service, depending on where you live. I really would advise checking out the Young Minds site as well.

I shared just some of my story to help raise awareness that depression can happen to anyone, at any age. But when it happens to a young person, without a vigilant adult, their problems can spiral out of control catastrophically. Self-harm is becoming more common, anorexia and other eating disorders are almost certain to include depression and far too many families are torn apart by the loss of a young person to suicide.

Teenagers are notoriously poor communicators; they are working on growing up and away, if they are able. Be watchful, be informed, keep talking. If you can’t do this without arguments, try this book, the 1-2-3 Magic for surviving your teenagers. It will show you how to begin to see them as young adults in their own right, and no longer just your little ones.

If you’d like to share your experiences, resources, tips or knowledge I’d love to hear them!

* Source: Young Minds

Special Needs Jungle named in The Times “Top 50 Sites To Make You Smarter”

Wowzer!

Special Needs Jungle has been named in the The Times (yes the UK national newspaper) as one of its “Top 50 Websites To Make You Smarter”.

Special Needs Jungle

How amazing is that?

Thanks to Justine Roberts, co-founder of MumsNet, who gave SNJ the ‘thumbs up’ in the ‘parents and teachers’ section of the Top 50.

It means a lot, especially as I’ve recently been diagnosed with  heart rhythm condition, Inappropriate Sinus Tachycardia, which makes day to day life much more difficult as I try to keep up with all my commitments.

This is partly why I’m so pleased that Debs Aspland has come on board to contribute all her knowledge and experience of SEN and coaching and help me take Special Needs Jungle to a new level.

SNJ is, at the moment, voluntary, although if I carry a post about a commercial product, I do ask for a small donation to my boys’ special school.

I’d like to move it to a self-hosted WordPress, but I don’t have the time to make sure it’s done properly, so any advice from savvy readers would be gratefully received!

So, thanks again to The Times and Justine. You’ve made my day!

Research backs Emma’s FACS battle

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

Emma and one of her children

Emma and one of her children

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

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

(more…)

Storytelling Week

My colleagues over at NetBuddy have an article in The Guardian about Storytelling week and how to engage your children, especially those with special needs, in the wonder of a great story.

I’m delighted to have been quoted in the article, which you can find here: Storytelling: Netbuddy’s top tips

My own tips, from my own experience are:

  • Choose your books carefully: Books can be an ideal opportunity to instil social awareness. There are many great books that can help and that use social stories to model behaviour.
  • Repetition and associating reading with something pleasurable is the key. As a former TV and radio newsreader, I know that the way you read and the words you stress are just as important as the actual words themselves.
  • For my children, repetition not only of the story but using the same intonation, helped them with familiarity of a book and helped them to link the story with the image. Using the same tone and stressing the same words each time, meant they knew what to expect and helped them to join in.
  • Many children with ASD are highly visual and so using a book that has bright and engaging images coupled with reading the story the same way every time can serve to make the book a ‘safe haven’.
  • Choosing a book that coincides with a child’s special interests is always useful – this is why Thomas the Tank engine is so popular with boys with Asperger’s!
  • Even now, though Son2 is 13, he can still remember the books we read together aloud. He loved Thomas but the ones he really remembers are not the ones you would expect – “Oi, Get off our train” helped feed his environmental awareness, “Dudley Top Dog” appealed to his love of dogs and “Guess how much I love you” was soothing, every single time we read it.

These are ours. What are yours?

Guess How Much I Love You

Guess How Much I Love You

Dudley Top Dog

Dudley Top Dog

9780399233678

Son1’s Fave: Little Bear’s Trousers

9780099853404

Oi! Get Off Our Train!

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…)

Teenagers and suicide- a growing challenge for our times

Mental health in adolescents with or without special needs is a growing concern and a particular interest of mine.

I found an article on MedPage Today about a survey of teens who had been treated for suicidal thoughts and mental health problems that indicates they are still at risk of attempting suicide. This, to me, says that  just because you have sought help for your young person in this situation, you can never afford to think the problem has gone away.

sad boyParenting teens is, in so many ways, much more difficult than parenting younger children. A balance must be found between watchfulness and intrusion. They naturally do not want to share their inner thoughts with their parents and keep so much more to themselves. They often think that they should be able to sort out emotional problems for themselves, when they are in no position to do so alone. (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…”

Skiing, Steam Punk and a view to the future

Happy New Year and I hope you all had a great Christmas without too much stress!

Ours was relatively quiet, with both Son1 and Son2 away skiing with their special school in the run up to the big day. We were more than half-expecting to have to fly out to Italy to collect Son2 after a few days and, indeed, he did Skype me gloomily after the first day, reporting that he didn’t like skiing and couldn’t stand up, his joints hurt and he felt faint. Sure enough, that evening, the phone rang. It was one of the party leaders assuring us that he was fine, and they would be trying their best to persuade him back onto the nursery slope the next day.

We held our breath until we heard back from Son2 the next evening. And what a change! Thanks to the experience and knowledge they have of him and their patience with reluctant participants, he had got the hang of it and was, he said, “Almost ready for the slopes”. By the end of the trip he was, “Better than Mr Faasen”, the school’s 12 foot rugby-playing PE teacher, whose care of Son2 last year made a huge difference to him. (more…)

Merry Christmas from Special Needs Jungle!

xmas12fb

Have a great Christmas from Tania, Son1 & Son2.. and Leo the Labradoodle! See you in 2013.

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.

The draft SEN reform bill – some reactions

One to watch. And we are, oh yes we are.

So fare thee well, Miss Teather, just as the draft bill is published, you get the boot from your job. Hardly seems fair, really, when you’ve done so much of the legwork and now Mr Laws gets to step in to steer the ship home. This is Mr Laws, a man with a vast amount of experience with special needs children (actually, I have no idea – I’m just guessing they wouldn’t put another person who hasn’t had any actual children, let alone any with special needs, in charge of SEN reform. Sorry, what did you say? Oh. Well. They did. *shakes head ruefully*) I’ve seen him described as ‘formidable’. What, compared to parents of SEN/D kids? Don’t fancy his chances much, do you? *UPDATE NOTE: Neither did the government, because roles have since been shuffled and Edward Timpson MP will be in charge of the SEN bill, see this post for more**

Now, I’m not saying in order to do a good job steering any kind of reform you have to have had personal experience of whatever it is you’re reforming, but when you’re talking about something as sensitive as vulnerable children with disabilities and their families, if you have no direct experience, you can only ever sympathise rather than empathise, which is quite, quite different. See, we don’t want your pity, we want you to feel our pain. Just a little bit, because, trust me – you won’t forget it.

Same goes, I am quite sure, for adults with disabiltites who’d quite like the government to stop picking on them and cutting off their only viable means of financial support or taking away their Motability allowances, without which they couldn’t even get to any job that would have them. Oi, you lot in the wheelchairs, why can’t you propel yourselves around the Paralympic stadium as fast as David Weir? You wouldn’t need Motability allowance then, would you?

As someone whose day job is for an international disability organisation, as well as having children with special needs, I really find the whole disability-bashing climate extremely offensive, disturbing and quite frightening particularly when it seems to have been started by our own government, unwittingly or not. I’m also not entirely sure the Paralympics has done a lot for the image of people with impairments who aren’t quite as nimble as Oscar Pistorius. It just seems to have made certain sections of the public think, well if they can do it – why can’t you? (Answer: because they’re elite athletes, you muppets.)

But anyway, now I’ve made that clear, onto the draft bill. I promised my thoughts, but, again because of said job, I must apologise for I have let you down. I am currently preparing a two-hour social media workshop to help patient groups with limb differences make their voices heard online,  and so normal SNJ service isn’t quite up to snuff. But, kind readers, I have managed to seek out the opinions of those who haven’t been quite as distracted and I present them for you in a mini round up, here.

The very excellent Jane McConnell of IPSEA said,

“Now is the time to consider the system of support these draft provision are looking to create and assess whether they will improve and enhance those that are already in place for children, young people and their families across education, social care and health. It is time to be clear and transparent about what can and cannot be expected to be provided by any system. This needs to be a system that works for all children and young people – not just those that have parents to “police” and enforce it. We look forward to working closely with the Government to make the most of this opportunity.”

NASEN’s Lorraine Peterson meanwhile said,

“We need to ensure that all the work that is currently taking place especially within the Pathfinders and the voluntary and community sector is not wasted and will support the final legislation as it passes through Parliament. We have a real opportunity to make sure that this legislation secures a better future for all children and young people.”

I quite agree with this – there is a lot of work being done by many people at the grass roots level, not to mention much money being spent on it. It is to be hoped that (and this will be a mammoth task in itself) when all the pathfinders present all their results, that only the best ideas that work for children will make it into the final bill.

The NAS said,

“The draft legislation sets out provisions for statements to be replaced by Education, Health and Care Plans (EHCP), which will extend statutory protections for children with SEN up to the age of 25 for those in further education.We believe that this will help improve transition for young people with autism. However, we are also working on the draft social care legislation to help improve transition into non-educational support.”

They highlighted various points from the bill some of which are below:

  • Legal definition of special educational needs remains the same [My note: Not sure how this could be changed, anyway]
  • Local authorities and clinical commissioning groups must make arrangements for jointly commissioning services for children with SEN in their area [My note: Well, from what I’ve seen so far within the pathfinders – good luck with this, there is a LONG LONG way to go]
  • Local authorities must produce their ‘local offer’ of available education, health and care services
  • Education, Health and Care Plans (0 – 25) replace statements of SEN [My note: It is quite likely however that there will need to be several versions of an EHCP format, depending on the child/young person’s age
  • All of the provisions of the Bill will apply to all schools including Academies and Free Schools [My note: And quite right too]
  • Local authorities must prepare personal budget in relation to an EHC plan where a request has been made by the parent or young person [My note: But no parents will be compelled to have one for their child]
  • Compulsory requirement for a parent or young person to participate in mediation before they can appeal to the Tribunal [My note: This can only benefit a parent who will then get a right to point out parts of their child’s application that may have been conveniently overlooked or just plain ignored – however, many parents, if not all would most likely want or need a representative and/or their key worker to help them prepare and attend with them.
  • There will be a revised Code of Practice [My note: Well, duh, not just a revised CoP but a completely rewritten one, from start to finish. And who’s going to do that? And when? Before the bill goes through parliament? At the same time? After?]

And this sparks another thought: Not only will there need to be a new Code of Practice, but every local authority will have to rewrite its graduated response documents and all its other SEN literature. There will, naturally, be a cost associated with this, and it will also take time – they can’t write it before they know what the new laws are. Then there is the cost of retraining all those LA staff who think parents are money-grubbing, sharp-elbowed harpies who are trying to bleed them dry.

I’m hoping to bring some parents’ views of the draft soon. if you’d like yours included, please do send them to me.

In my few months working with the LAs and colleagues on the pathfinders so far, I have to say I have met some incredibly dedicated, knowledgeable and caring people. A few are just plain wonderful. It’s going to take time for the rest to be whipped into shape and, as I said in my last post, they’re not exactly making an early start on changing attitudes at the lower levels.

But you know what? I’m optimistic. You have to be, in such a root and branch overhaul like this. While you cannot ignore the many areas of concern, without putting forward a positive attitude and a will to work for change, it cannot succeed. Let’s just hope that those people working so hard for it don’t drop from the pressure of tight timescales and overwork before then.

And Mr Laws? I’ll extend the same invitation to you as I did to Miss Teather – we’re having a pathfinder event in November, a joint parent and LA organised one in Surrey. Do come. You have, I am sure, a lot to catch up on and this will be a great place to do it.

Feed a child with an old phone

Just a heads up about this in case you missed it on the news.

Two meals in my hand

A new campaign has been launched by NetMums and Kids Company to help provide meals for children who are going hungry. This isn’t in some far-flung developing nation hit by natural disasters we’re talking about – it’s this country of our own, that’s been hit by a very man-made disaster. I would like to say how shocking this is, but, with the stories I’ve been highlighting recently, I’m sad to say it’s all too familiar, though no less disturbing.

Imagine being a ten-year-old in the UK. Your mother has left you alone with your younger siblings. You are starving, but she is too disturbed to notice. The neighbours know about your hunger and through the letterbox they throw in biscuits, but are too frightened to alert social services because your mother’s boyfriend might harm them. The biscuits make for a good day, on a bad day you draw pictures of food and swallow the paper.

This is a true life example of the children that find their way to the charity Kids Company where they no longer spend the day alone and hungry but are fed, played with and cared for. They have to go home at night, but at least they can come back the next day. And the next.

But instead of wondering how it’s possible to make a difference, root around in your cupboards for those old phones that you not longer use and take them to your local Orange or T-mobile store.

 The campaign, led my Kids Company’s Camila Batmanghelidjh and the NetMums website want you to donate your old mobile phones because with the help of  Orange and T-mobile, each phone donated is converted into cash to pay for a meal for a hungry child.
I’ve got two phones on my desk that I’ll be donating. What about you?

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:

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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 Needs Jungle in the Daily Telegraph. What I really think

There’s a story about SEN in the Daily Telegraph today “Can 20 per cent of schoolchildren really have special needs?” by Peter Stanford. It’s already attracted lots of comments, some informed, others somewhat less so, shall we say.

The story is a follow on to other, recent reports blaming rising SEN figures on either bad parenting or bad teaching or both. Peter wanted to find out the real root of it, but it seems even he was flummoxed.

He interviewed me for the piece and the general gist of what I said is there, although I didn’t give up my TV career to go into school to help, I gave it up to be with my children at home because I decided it was a much better use of my time than giving good “TV smile”. Being able to help in school and see for myself how things worked was very useful, especially in the light of my boys’ difficulties. I could see for myself how different they were to other children, in a classroom setting. I could see that the teachers were, in my opinion, of varying quality, ranging from totally brilliant to inexperienced and out of their depth.

What I said when speaking to Peter but didn’t make it into the piece, was that I believe that the pressures of today’s society on children, parents and teachers are immense. Responsible parents are faced with the knowledge that their kids are going to have to survive in a highly competitive world and are more vigilant when they see their child not doing as well as they might. Responsible parents just want their child to have the same opportunities as every other child to reach their potential – and that sometimes means accessing extra help through the SEN system.

Are these parents all middle-class? Many are, but far from all of them. I know this to be true from the emails I get. It doesn’t matter what class you are, the difference is how much attention you’re paying to your child and that has nothing to do with class.

Now, it is obviously true that a child does not automatically have SEN just because they are not at the top or even the middle of the school class. But a parent knows their child the best. When their profile of achievement is uneven or their social difficulties affect their ability to learn, intervention is warranted. In a mainstream school, a teacher has thirty children in the class. That’s thirty children of differing ability, different learning styles and varying levels of attention and behaviour, whatever their background.

Teachers aren’t super-human. They’re overworked, stressed (whatever the man from OFSTED says) and under-resourced. Can one person pay as close attention to the needs of thirty totally different children as each child requires? Of course not and the blame is not theirs. The SENCo might have three other roles in the school. The IEP may not be worth the paper its written on because it’s rarely looked at (through time pressure, not because the teacher doesn’t care).

This is why responsible parents have to step in to make sure their children get the help they need. They’re not “sharp-elbowed” or any other derogatory term. They are responsible, vigilant and determined, because if they don’t help their children, no one will. And don’t think that they are able to somehow ‘cheat’ the system. Only around 2% of children actually get a statement – far less than should have one in my opinion, but those that do have been through an unforgiving assessment process of experts and, sometimes, the scrutiny of an appeal to the SEND Tribunal

And what about those children who are not blessed with determined parents like these? The ones who are often put on the SEN register because it’s the only thing in a teacher’s toolbox to give them a leg-up? This is the huge inequity of society. These children often fall through the cracks. They end up in a continuing cycle of deprivation. They may even end up in the criminal justice system.

They may or may not actually have special educational needs to start with, but if their home life is insecure and they live in poverty, it is sure to have an impact on their learning. They may just need attention and nurturing to give them self-esteem and confidence in themselves. Former head teacher, now an Educational Psychologist, Charlie Mead, has an answer and it’s not rocket science. He has instigated ‘nurture groups’ in secondary schools with amazing results.

In this presentation he describes how nurture groups in mainstream secondary schools can enable children with “special educational needs” to receive the support they need and improve their educational outcomes making the best use of scarce resources. Watch his presentation below. To see him speak, book for the TAPF SEN conference in June at this link

Why I turned my back on my TV news career

Recently I appeared in Woman magazine – a small section in a feature entitled, “Meet the regret-me-nots”

My piece was headlined, “I regretted becoming a full-time mum”, which isn’t strictly accurate – rather I found myself, like many mums who give up professional life for stay-at-home motherhood, feeling a certain wistfulness for opportunities forgone. I also experienced the loss of self-esteem that many women feel when they no longer have a full-time, possibly high-flying career. In fact, when I stopped being a television news presenter, even my own mother (herself a career woman) stopped boasting about me. After all, I was just a mum now, wasn’t I?

Well, I happen to think that parenting is the most important job that anyone can do – because done badly you can ruin the life and chances of another human being. And if I’d been at work, I may not have had the time or energy to work out why my children were different. The subtleties of Asperger’s can easily be missed or misinterpreted and that can lead to the child not getting the help they need to fulfill their potential.

You can, of course, be a great parent and work full-time and I would never suggest anything else – other peoples’ lives are simply none of my business. But for me, once I’d held my son, my decision was made. I think my colleagues were a little shocked that this ambitious, somewhat fierce, journalist could just walk away from what I loved doing so easily.

We had to move to a cheaper part of the country to afford it at the time, but my own chaotic childhood had left a deep yearning for a stable, traditional family structure and I’m lucky that, despite the special needs issues, we still have that. I’ve also replaced my career in the often soulless world of television news with something better – my family, my writing, the special needs work and my new job helping people affected by congenital limb differences. I’m a better person because of it. Maybe now my (sadly, late) mum would even boast about me again if she could!

Anyway, now a new issue of Woman is out, I figure they won’t mind if I post my own little piece here. You can find the Woman Magazine website here. Thanks to reporter, Nikki Osman, who wrote the piece. Click the image or the link below to read it for yourself.

My husband and I are off on a spa break tomorrow, courtesy of GP carers breaks in Surrey  If you’re a carer in Surrey, you could be eligible too. If you know someone this applies to, please pass the link on to them.

Look out for the regular story round up tomorrow!

Woman Magazine 9April-Tania Tirraoro.

Special needs stories this week

Some interesting stories this week…

2012 brings a School Run SEN Qn’A and a win for Pat! #specialneeds

SEN-Getting Started With StatementsIt’s January 6th and my boys are still off school; they finally go back on Monday. It’s been an interesting Christmas break with my eldest having a party for 12 of his closest teen pals at our house (my sister who was staying with us cleared off to the pub). This was preceded by just minutes by my 12 year old slipping off his bedroom ‘Balcony’ (he doesn’t have one) and me seeing him tumble past the kitchen window to the floor. He was mercifully unhurt, though I had to reach for the Christmas sherry at 4pm.  No surprise that I was almost catatonic by Christmas Day. Still, Jamies’ turkey was a hit, the gravy went down a storm and the brandy for the pudding ended up in my glass.

The teenage years bring their own set of issues and these are intensified by their Asperger’s. They are both completely different in their needs and idiosyncrasies – as they say, if you’ve seen one child with Asperger’s, you’ve seen one child with Asperger’s. Finding new ways to parent in adolescence is challenging and exhausting. 2012 looks to be an interesting year for us!

It’ll also be interesting to see how the SEN Green paper progresses though its pathfinder stages in the coming months. Our LEA, Surrey and that of neighbouring Hampshire are among those chosen to test run the proposals and Special Needs Jungle will be watching closely.

When the changes, in whatever form they come, are implemented, I’ll have to update my SEN guide to Statementing book. The name will have to change for a start, though I’m quite certain all the advice to parents having to gather evidence to prove their child’s needs will stay exactly the same. They may abolish the word ‘statement’ but if you want your child to get high level SEN support, you’re still going to have to prove your case and my book can help. Nothing is going to change in the next few months anyway, so if you’re thinking about applying for an assessment, don’t delay – the process is long and often arduous so start gathering your evidence as soon as you can.

I’m soon to be hosting a Q&A on The School Run website about statementing – get your questions in now and I’ll be answering them during the week beginning 16th January.

If you’re interested in the book – and it’s sold quite a few copies it seems, so there’s a lot of people who are looking for advice – it’s just £6.99 on Amazon or £5.18 for Kindle. If you fancy a free copy, I’m offering two for people taking part in The School Run Q&A, check out their site at the link in the para above.

Also, congrats to Pat Bolton Arkless who won the free copy in my Christmas giveaway. Son2 wafted down from his Technolair that he’d scented with cinnamon Glade, graciously leaving his 32″ TV (thanks to fab pre-Christmas sales) Xbox experience to select a name from the hat. Pat, it turns out, runs Parent Power in Gateshead that helps families with special needs kids, so I popped an extra copy in there to help her very valuable work. And now I’ve found her, I also cheekily asked if she could find time to write a guest post about her work. Even though she’s a busy woman, she’s kindly agreed so we’ll feature this in the coming weeks (No rush, Pat, if you’re reading!).

So, Happy New Year to you all and if you have any ideas for great posts, or want to write one suitable for here, get in touch!

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

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

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Lesley McCall

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

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

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

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

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

Some Techniques that may help:

1. Positive Future Pacing

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

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

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

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

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

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

4. Think Straight- perspective!

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

5. Reframe the negative to the positive

‘My child can’t do ….but they can do

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

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

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

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

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

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

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

SEN stories that caught my eye this week (w/e2nd Dec)

Here are some stories I liked this week as well as some of my own SEN posts from the week that you may have missed (how very dare you!)

Did I miss your SEN story? If so email your RSS feed to me via my contact page

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

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

Me & my boys circa 2003

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

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

SEN stories that caught my attention this week.

Here are some stories I found interesting that touch on Special Educational Needs in the press this week. To get these and other posts delivered to your inbox, subscribe to this blog on the left.

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

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

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

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

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

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

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

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

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

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

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

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

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

Buddy Brilliant! – NetBuddy – A Great Special Needs Resource

www.netbuddy.org.uk is an award-winning website for parents, carers and learning disability professionals. It is a space to hunt for practical ideas, swap tips and access information on everything from brushing teeth to challenging behaviour. Like all good ideas, it’s so simple it’s hard to believe no-one thought of it before. So what gave Netbuddy’s founder, Deborah Gundle, the idea? Goalkeeper trousers!

Deborah’s son Zach has a learning disability.  “When Zach was little, so much of my time and energy was spent solving day-to-day problems,” says Deborah. “One day, I was in a sports shop buying football socks for my other son and I spotted some goalkeeper trousers. They were padded around the knees and the hips, and were perfect for Zach, who was about seven or eight by then and still crawling.”

That’s when Deborah decided to start writing down her ideas for other people to use, and encouraged her friends to do the same. But it wasn’t until several years later, when she met Linda Goldberg – former CEO of the learning disability welfare charity, Cosgrove Care – that the idea for Netbuddy was born.

By-you, for-you resource

Together, Deborah and Linda started collecting practical tips and suggestions from parents, carers, teachers, therapists, health workers – anyone with first-hand experience of learning disabilities. The idea was to create a ‘by-you, for-you’ resource, which people could add to and develop themselves. They wanted Netbuddy to be a place where people could share their ideas, knowledge and experience in a real, practical way.

Netbuddy went online in September 2010, and the response from the learning disability community was immediate. “This is such a brilliant idea! Nobody really knows how to cope with the day-to-day nitty-gritty unless they’ve experienced it personally,” wrote one parent. “I wish there had been something like this when my son was young,” said another.

Since launching the site, tips have been coming in on all aspects of caring for people with learning disabilities; everything from bed-wetting to hair cuts and new sections are being added all the time.

“We respond to what people want to see on the site,” says Linda. “If we get lots of tips in an area we haven’t thought about, we simply create a new section. That’s the beauty of Netbuddy – it’s completely interactive.”

If there is a lot of information on a specific topic, it is used to create an ‘information pack’. The latest packs are on sexuality and relationships, holidays for people with learning disabilities, arts and leisure opportunities and apps for the ipad.

Interactive forum

In addition to the tips sections and information packs, Netbuddy has a forum where people can post specific practical issues they may be having, or share their own break-through moments. There is also a thread for people to celebrate their good news within a community that understands the hard work behind those successes. Netbuddy’s forum hosts an ‘Ask an expert’ section, where people can post specific questions to specialists in their field. Currently, there is a learning disability occupational therapist, an adaptive technology specialist, a parenting siblings advisor and a speech and language therapist – all have proved very popular.

“I think the reason Netbuddy has really hit a chord is because there is nothing else quite like it,” says Deborah. “It’s there 24 hours a day so you can get practical help whenever you need it. It works because people in the learning disability community like to support each other. If there’s an opportunity to help someone else, they nearly always will.”

The challenge now for Netbuddy is to encourage more professionals to start using it – teachers, doctors, nurses, pediatricians, social workers, therapists, health workers and others. Some have been quick to see the potential, like health coordinator Kath Ingram, who regularly checks Netbuddy for tips.

“I love the tips on teeth cleaning, which can be so problematic for parents and paid carers,” she says. “I’ve printed out information from Netbuddy and ordered samples of recommended items to show people on visits.”

Professional help

For doctors, there are sections on encouraging people to take medication, hospital stays and medical appointments. The communication section has obvious uses for speech and language therapists, and there are lots of tips on dressing and clothing for support workers. But it’s not just healthcare professionals who stand to benefit. Teachers can also pick up useful tips from Netbuddy – activities to do in the classroom or ideas for keeping class outings safe and easy.

“Netbuddy is a goldmine of useful information,” says Deborah. “We hope people will use that information and share it with carers – either print it out or pass on the email address. When you help a carer you directly help the person they’re caring for, so it’s really important to support carers.”

 For more information visit www.Netbuddy.org.uk

The sidelong glances that can cause anguish

One of the most difficult things to cope with when your child has a ‘hidden’ disability that affects their behaviour or social communication ability, is the attitude of other people, even other parents.

When my older son was small, he would always be on the go and would find playing with other children difficult, even though he wanted to. He would be unable to sit still in class, would always need to be first and when upset could go into a deep, black sulk that would be incredibly hard for him to recover from. I often felt that people were looking at him and blaming his ‘bad’ behaviour on a lack of parenting skills.

At first, he was invited to parties and to tea, but play-dates became few and far between. On the way home from school he would sometimes be in a fury because of something that had happened in school and would march off in front of us or sit on a wall and refuse to move. Other parents would pass us by, maybe with a pitying smile, sometimes with a disapproving look. What a terrible mother she must be, I could almost hear them think.

At the time, I was searching for answers to my son’s difficulties. Other parents, I know, thought I was just trying to blame his behaviour on ADHD when he was just a naughty boy. After all, he looks perfectly normal and he’s clever. He just needs a firmer hand! Then when he was initially diagnosed with ADHD (although later changed to Asperger Syndrome) and we tried medication, other mothers’ disapproval was palpable. All he needs is better parenting – what kind of mother gives her kid ‘the chemical cosh’?

Once, following the internment of my mother’s ashes, we went for lunch at a local pub. We were several hundred miles from home so we had little option. My younger son, who also has AS, was distressed, hungry and thirsty. When he is like this he becomes unable to speak or make any decisions even about what he wants to eat. He made something of a scene and then, when food came, I had to sit him on my lap and help him eat and drink. A woman at a nearby table had glared at us throughout with the most sourpuss look on her face that you can imagine. I had had enough. “What are you staring at?” I challenged her. “My son is autistic and we’ve just buried his grandmother!”. The woman looked shocked that I had called her out. “You’re the one I’m looking at,” she claimed, which could not have been further from the truth. My sister, Deborah, who had seen the same thing, said to me, “Good for you.” That woman had passed judgement on my son’s distress, not knowing anything about him or us. I feel angry now, just remembering it. She’s just lucky my sister Claire hadn’t been there; she’d have got up and smacked her one!

It’s people like that woman and other self-righteous mothers who have no experience of children with so-called ‘hidden’ disabilities that make life harder for those of us who do. Sure, there are bad parents out there, but before people judge, I just wish they would consider that the child that’s having a meltdown in the supermarket may just have special needs and the harried parent with them is probably exhausted, embarrassed and hoping for understanding, not condemnation.

Books I recommend for Special Needs

I have quite a collection of books about special needs and parenting and thought I would share some recommendations with you. I usually buy mine from amazon.co.uk, so I’ll link to each book so you can have a closer look.

1-2-3 Magic – Thomas Phelan – This is an absolute must for all parents who want to regain control of their children and their own lives. It’s slim and easy to follow and very very simple. The key is to talk to your children about this new method of discipline, and when you are counting – don’t say anything else! Both parents must buy into it and FOLLOW THROUGH. Our usual punishment is removal of computer privileges if we get to three without compliance. We don’t usually get to three. It works.

The Complete Guide to Asperger’s Syndrome – Tony Attwood. The foremost expert on AS. Great book, easy to read. I used some of this to help explain my son’s condition for his statementing process.

Kids in the Syndrome Mix of ADHD, LD, Asperger’s, Tourette’s, Bipolar, and More!: The One Stop Guide for Parents, Teachers, and Other Professionals (Paperback) -by Martin L. Kutscher; Tony Attwood; Robert R. Wolff.  – Excellent book explaining the co-morbidities and how you can take practical steps to help them.

Hot Stuff to Help Kids Chill Out: The Anger Management Book -by Jerry Wilde.  A slim volume That is written to be read alongside your child and shows that that anger actually damages themselves and helps children take responsibility for their own emotions. A great little book.

Can I Tell You About Asperger Syndrome?: A Guide for Friends and Family (Paperback) -by Jude Welton – Another slim volume written from a child’s perspective explaining his view of the world as a child with AS. Very useful for siblings, friends, teachers and grandparents. Lobvely illustrations and easy to read typeface.

If you have any recommendations of your own, please leave a comment, I’d love to hear from you.

An Actor’s Life For Him.

My 11 year old has just had his first co-starring role in a school play. He’s currently playing Ratty in a production of ‘Wind in the Willows’ at More House School.

When he came and told me that he was planning to audition, I was very worried about how upset he would be if he didn’t get a part. I wanted to shout, “Don’t audition! It’ll make you miserable!” But I held my tongue and told him what a great idea it was.

On the way home from school a few nights later, he was telling me what he had had for lunch and then, “And by the way, I’ve been cast as Ratty in the play.” I nearly crashed the car, gripped by a sense of excitement and fear. Excitement because someone had had faith in him to cast him (Thank you, Mr Kirkham) and fear because I knew that over the coming months we would have to HELP HIM LEARN HIS LINES.

Now, I have no objection to helping him, quite the contrary, I used to do the same for my mother in her amateur dramatics days. The fear was that he wouldn’t want help and wouldn’t bother to spend any time learning his lines at all. My son has Asperger’s and is very bloody-minded and stubborn. I worried he would refuse any offer of help and, true to expectations, the only time he would let us help was when he was in the bath. We would then have to perch on the toilet lid and go through the script with him as he soaked in the bubbles. Still, at least he was learning it.

The weeks passed and as often as we would ask him if he wanted to rehearse, he would politely turn us down. I ground my teeth with anxiety as I imagined him on opening night, being prompted with every line and ending up humiliated.

The Saturday before the performances, he finally let us help and we were horrified to find that there were several scenes that he only had a very hazy recollection of. In a frantic effort to assist, we recorded the whole script onto his computer so he could listen to it and practise.

Luca as Ratty

Luca as Ratty

Then, last night came. We filed into the hall, nerves jangling, taking seats in the second row, as we were banned from the front in case we put him off. The lights went down, and he was on stage, delivering his lines with perfection. He even prompted Mole at one point. How on earth did that happen? The boy was fantastic! They all were!

The production was beautifully staged, the live music was impeccable, the set imaginatively decorated, the costumes perfect. It was nothing like a ramshackle school play, it was … slick, impressive and great entertainment.

For the first time ever, as I watched my son on the stage, I saw him not as my 11 year old son, but as a young man in his own right, not connected to me at all; an individual with talent, confidence and guts. I was so proud, I could have burst.

For all his problems with ASD, my son is a truly remarkable young man. But although we have tried our best to help him as parents, it is the staff at More House School who have found a way to nurture his gifts, with expertise, understanding and always, encouragement. They make him feel that he has something to offer; that he wants to audition and join in, that there is a place for him and he is welcome. That is no small achievement and proof that with the right educational setting, obstacles can be overcome and where everyone is treated as the individual they are.

It is nearly the end of the school year and I expect I’ll gush again before then about how wonderful our school is, but for now, Mr Kirkham and your amazing team, three cheers for you all and a huge thank you!

Child-Free.. as free as the wind blows..

This morning, without so much as a backwards glance, both our boys climbed on board a coach with their classmates and set off for their annual trip to PGL. For us, this means no children in the house for the next four days. We still have the dog of course, but he doesn’t put up a fight at bedtime or complain that dinner is ‘disgusting’.

At the same time as feeling ever-so-slighly elated, our hearts do go out to those brave teachers venturing forth with fifty boys aged between 7 and 11, all with some type of special need. These range from dyslexia, to speech difficulties to Asperger’s Syndrome. The teachers know only too well what puzzled faces could ensue with the saying, ‘It’s raining cats and dogs’.

Far from being tough little tykes, practically all these boys have in their backpacks their cuddly toys, blankets or other comforter, even the big strapping ones like my 11 year old. He has his old cotton cellular cot blanket, a stuffed reindeer and two stuffed Club Penguin plushies, all shoved down into his rucksack along with his tuck for the trip.

Our boys went on the trip last year and then, there were  a few tears from my youngest before he set off, but as soon as he was on the coach, he was smiling again. I shed more tears on the way home at the thought of them being away from me on a school holiday for the first time. When they returned, I was going through Son1’s bag and there was a suspicious amount of clean underwear, an untouched toothbrush and a still-neatly folded flannel. It turned out that he hadn’t washed, cleaned his teeth or changed his pants for the whole four days.

Despite this squalour, he still managed to bag himself a posh girlfriend at the end of trip disco. She rang him so often afterwards that I heard him say to her, “Can you not ring me so often, it’s getting a bit annoying.” Oh dearie me, he has a lot to learn.. but then he was only 10 at the time.

This year Son2 is determined to grab himself a girl as well. He has carefully chosen himself a pink linen shirt from Zara and refused to get his hair cut so it’s nice and long and trendy. However, after his success last year, Son1 is uber-confident that the prep school fillies will be throwing themselves at his feet again. He’s offered his brother a few pointers, but let’s hope his tips on personal hygiene aren’t among them..

See my other blog – Not As Advertised

I’ve decided to start a second blog. I know, that’s just greedy but there are plenty of them to go round if you want your own. It’s called “Not As Advertised” and it’s for all those posts that I don’t want to put on here because this site focuses on special needs.

Not As Advertised - Try it and see!

Not As Advertised - Try it and see!

It’s about how the life you expected to have never turns out as you expected -hence the title,  Not As Advertised. If you like these blogs, please take a look at Not As Advertised and I’d be very pleased if you followed it..

The latest blog is entitled ‘It’s my birthday’ because it is. My birthday. I’m double 21. How on earth did that happen?