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?

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?

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…)

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.

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!

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!

The week’s scoop on special needs and disability stories

Today (Friday) is a day full of SEN green paper meetings for the Surrey pathfinder for me and tomorrow it’s the long-awaited Towards a Positive Future SEN conference for which there are still a few bursary places available for parents.

All that’s left is to choose what to wear – and as I’m not very good at this sort of thing, it’ll probably be the most challenging part of the whole thing. Next week I’ll be at the finals for the BritMums Brilliance in Blogging Awards for which Special Needs Jungle is a finalist, so I expect you’ll find me searching the rails at the Posh Dress designer exchange shop in Farnham where they always seem to have the right thing that actually fits me.

Family wise we’ve had a week of CAMHS & cardiology visits for Son2. The consultant paediatrician spent the CAMHS session yawning and answering his phone, but at least the psychologist was sensitive and attentive and we had a satisfactory outcome, although the six month wait left a lot to be desired.

So, on to the week’s stories. Check out, if you haven’t seen it, the Pathological Demand Avoidance article by Deborah Rourke – it’s had hundreds of views this week and is well worth a read. Also have a look at my post about Son2’s raspberry Pi computer. The Padawan has become a Jedi…

Have a great weekend and don’t let the weather spoil it!

Jubilee round up of special needs stories!

Me with Sons1 & 2 

Ah, the Jubilee weekend is upon us. We’re having a barbecue with our lovely neighbours, so I hope it doesn’t rain. They’re moving soon – I just hope the new people love walking our dog as much as the Smiths do! I’m going to try to have the weekend off and do no ‘computering’. This may be unpleasant torture though… we shall see. I still have my iPad. Plus it’s my birthday on Wednesday. I’m hoping my kids on half-term will wait on me hand and foot. Well, you can dream!

Have a fab bank holiday weekend, all, and thanks for your continued support for Special Needs Jungle.

SEN – The Next Steps – My views & Meridian Tonight feature

So, there’s been much furore today about the headlines for proposals that  450,000 children be ‘struck off’ the SEN register. This is a bit of a stupid headline, to say the least. I was interviewed by Meridian Tonight (clip at end of post) about it for my views as a parent of SEN children.

The story was linked to this announcement from the DfE today that continues on from the SEN Green paper on Special Needs and Aspiration, that was trailed last week. It seems that any story about children with special needs is pounced upon by the haters and the critics. Oh, those bad teachers. Oh those terrible parents. Oh those benefit scroungers. I can guarantee you that none of those people who make moronic comments like that are either a teacher or have a child with special needs, which means that they should, quite frankly, shut up.

The key points in today’s “Next Steps” announcement were:

  • The new Education Health and Care Plan (EHCP)  will eventually replace the statement and will last from birth to 25 for those children who need it. The EHCP will be a “single assessment process, … ensuring that families have confidence that all of the different local agencies – across education, health and social care are working to together to meet their needs. This will stop parents having to have to undergo repeated assessments with different agencies.”
  • Personal budgets: all families with an approved education, health and care plan will have a legal right to request a personal budget, if they choose.
  • Joint commissioning: LAs and clinical commissioning groups would have to put arrangements in place to ensure that services for disabled children and young people, and those with SEN are planned and commissioned jointly.
  • School choice: parents whose children have an education, health and care plan would have the legal right to seek a place at any state-funded school of their choice – whether maintained, academy, Free School or special. LAs would have to name the parent’s preferred school so long it was suitable for the child, did not prejudice the education of other children or did not mean an inefficient use of funds.
  • Local offer: all LAs would publish a ‘local offer’ of  support, so parents would know exactly what is available instead of having to fight for basic information.
  • Mediation and the tribunal and children’s right to appeal to a tribunal: introducing mediation before Tribunal for disputes and trialling giving children the right to appeal if they are unhappy with their support.
What some sections of the press jumped on was that the statement from the DfE mentioned an OFSTED report from 2010 that claimed many children were wrongly identified with SEN. I touched on the reasons for this in my post on Saturday, so you can read it there. But to say that this happens often or even routinely is a huge exaggeration.
It is quite right that the government should seek to provide the most appropriate provision for children whether they have actual SEN or whether they need nurture groups because of family difficulties. If they can bring forward the funding and expertise to put this in place, then they should do it as soon as possible.
What they should NOT do as soon as possible (ie, this summer) is think that their policy can be informed by any results from pathfinder trials of the EHCP. In Surrey, this is still at a very early stage – ie, we, at Family Voice Surrey, are not even sure that any families are yet trialling it, so to have any firm conclusions drawn by this summer is optimistic in the extreme.
Tomorrow, Surrey has another day-long EHCP meeting that myself and my FVS colleague, Angela Kelly, will attend with great interest.
What must NOT be done is for these plans to be rushed through for political reasons – we are talking about the futures of some of society’s most vulnerable and if you’re going to shake up the system it should be done properly, in a considered manner.
Anyway, now for the light relief. Christine Alsford from Meridian (where I cut my TV reporter teeth) came over and filmed me and Son2. Son2 only agreed if he could be in his BodySox and the crew thought this was a genius idea.  What do you think?

Catch up with the best special needs blogs and news from this week

So many autism, Asperger’s, dyslexia, ADHD and other special needs stories this week. This is my pick of the best of the blogs, news and research.

If you enjoy reading Special Needs Jungle, I would be really happy if you would please nominate SpecialNeedsJungle.com blog in BritMums Blogging Awards in the CHANGE! section

Enjoy this week’s story selection. Don’t forget, if you have your own post or story, add it in the blog comments section.

Conference for parents of children with special educational needs and professionals

National Autistic Society president, Jane Asher, will be speaking at a conference in Newbury, Berkshire, in June for parents of children with SEN and associated professionals. The agenda will be published soon but the flyer is below and a downloadable pdf version is at the bottom.

Towards_a_Positive_Future_Conference_2012_flyer – Download as PDF

 

SEN & Special Needs Stories I’ve spotted this week

Here’s my usual round up of the more interesting special needs stories in the UK this week.

SEN Magaine: Better Futures group calls for ADHD assessment at second-term exclusion 

WebTV: “What’s the difference between a problem child and a child with a genuine problem such as ADHD? – Video « Special Needs Jungle

BBC News:  Slow starting pupils ‘don’t catch up’  This makes interesting reading

Dept of Education: New Studio Schools to bridge gap between school and work  I think this is a great idea- do you?

Made For Mums: Choosing the right school for your child with learning difficulties @MadeForMums

National Autistic Society: Autism journal available free for limited time FULL of interesting research look while it’s free

Not As Advertised Blog: Advice needed for teenage party for AS son with new girlfriend! See my post

The Observer: It’s our narrow view of education that holds pupils back | Yvonne Roberts | Comment is free

OnMedica: GPs to be offered help in identifying autism – About time!

National Children’s Bureau: Strong opposition to cuts to disabled children’s benefits 

If there’s an interesting site you think I should know about, please send me the link.

Tania

 

“What’s the difference between a problem child and a child with a genuine problem? – Video

I’m delighted to highlight a programme about identifying a child with ADHD. Do you recognise your child from the descriptions in the video?

“What’s the difference between a problem child and a child with a genuine problem?

Watch our webTV show where Lorrine Marer, Behavioural Specialist and ADHD Coach, shares her practical advice on the subject.

With Christmas just around the corner, children are sure to become easily distracted, excitable and impatient at the thought of all the presents they soon get to unwrap.

Along with all the added stress of present buying and manically organizing Christmas parties, this time of year can also be a nightmare for mums and dads when it comes to handling their child’s behaviour. This could not only be affecting home life but also having an impact in the classroom and proving to be a distraction for other children at school. Furthermore, figuring out whether your child is just being a typical excited kid at Christmas, or whether they might need specialist help with their behaviour, can be hard to decipher during the festive season.

So how can you really tell whether your child is suffering from a genuine problem or whether their inability to focus is just ordinary child behaviour? Do you feel at your wit’s end, or do you often think you might be reading too much into the way your child behaves?

If you answered yes to any of the above then watch our webTV show on Monday 12th December at 2.30pm with Lorrine Marer, behavioural and ADHD expert who will give her practical on the subject.

Watch our webTV show on: http://www.studiotalk.tv/show/whats-the-difference-between-a-problem-child-and-a-child-with-a-genuine-problem

What do parents of a newly-diagnosed child need?

I recently attended the launch of Family Voice Surrey, the new local forum for parents and carers of children with SEN and disabilities in Surrey. It’s part of the National Network of Parent Carer Forums and aims to give Surrey parents a voice in the policy and decision making process for disability and SEN services.

As part of the table discussions we were asked to identify the top three challenges facing families with children with disabilities and SEN in the county. When each table’s facilitator stood up in turn and read out their lists, almost every table had identified the same issue – information and support after diagnosis.

Everyone agreed that was is needed is an independent support worker who had all the answers to the questions that a diagnosis sparks in parents. This includes where to find information about assessments, financial assistance, support groups, access to services and education about how to help their child and so on.

When your child receives a diagnosis of any illness or condition, it is a very distressing experience that can also feel very isolating, especially if you do not know any other parents in your position. It can also, at the same time, be a relief that you were not imagining these symptoms and that you now have a name for the problem. This is particularly true when the child has a hidden disability such as Asperger Syndrome or ADHD. For a while, parents need to take stock, maybe reassess their hopes and expectations for their child. Perhaps they also need to grieve.

But then comes the stark reality that they have to take action to help improve their child’s life chances – and that means finding accurate information and at a local level – who is a good paediatrician, which are the appropriate schools, does my child need an assessment for a statement and how do I go about that? How do I find out about occupational therapy or speech and language therapy?

There are lots of great volunteer organisations out there, but the problem is finding the ones that are right for you and your family. So, what is needed is someone who can be sympathetic and knowledgable and who can act as a support and a signposter, maybe even an introducer to that the family needs.

So, who can provide such a service? Who will fund it? These are two good questions – maybe someone reading this post has an answer. If you have any ideas how  this can be achieved or what else a newly diagnosed family might need, please leave a comment…

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.

Ritalin, talking therapies and what I think our kids really need…

The Health Minister, Simon Burns has said that the chief medical officer and the NHS medical director are planning to write to clinicians to remind them of the full range of NICE guidelines on conditions—including ADHD—that affect children’s mental health. It came in response to an adjournment debate on 25th October 2011 called by MP Pat McFadden on the rise in prescriptions for children of the drug methylphenidate (Ritalin, Equasym etc) used to treat people affected by the symptoms of attention deficit and hyperactivity. These symptoms affect behaviour and the ability to learn and as well as being found in ADHD, are also co-morbid in young people with autism, Asperger Syndrome and other similar development disorders.

Mr McFadden made a plea for the Minister to carry out a proper, comprehensive review of the use of these drugs involving professionals from the medical, psychology and teaching fields, as well as the families of those who have been prescribed the drugs. He asked the Minister, “Will he commit his Department to carry out a proper research project into the use of the drugs, including the age of the children receiving them? Secondly, in the light of the huge growth in prescriptions, will the Government carry out a proper review of practice in the field, as called for by the Association of Educational Psychologists, before the new guidance comes into effect in 2013?”

Mr Burns said he himself had a family member who was successfully being treated with Ritalin. “Across hospital and primary care, the prescribing of drugs for ADHD increased by around 12.5% between 2007 and 2010, the latest four years for which data are available, and by around 6% in 2010 alone. Prescribing in primary care alone increased by 22% in that four-year period, reflecting a significant shift in prescribing activity from a hospital setting and into primary care. Looking back further, one sees that prescribing in primary care has tripled in the past 10 years.”

However he pointed out that the cost of doing nothing was too great for those affected and that, if left untreated, mental health problems can lead to low attainment in school, antisocial behaviour, drink and drug misuse, worklessness and even criminality in adult life. He said, “Getting things right for children and their families—through a broad range of support to promote good mental health from the start of life, through the school years and into adulthood—can make a real difference to young lives.”

Yesterday, the government announced a further £32 million pounds for child mental health services, including talking therapies. While this may seem like a lot, when split across the country, it might not go as far as hoped. Talking therapies take time and require therapists qualified in techniques such as cognitive behavioural therapy, particularly in its use with children. I believe that this issue should not be looked at in isolation. It is an educational, parenting and medical issue all at the same time.

In educational terms, it should be looked at whether the right learning environments are available to teach children for whom sitting still in a classroom is impossible. There is plenty of practical advice available giving tips and strategies to help manage students with ADHD and help them thrive in a regular school environment. What is needed is the will to implement them consistently at a classroom level. That takes teacher training. And when I say consistent – that is key. One of my sons one year in mainstream had a teacher who managed him well. The next year he moved into a class with an older teacher who didn’t even realise he had a diagnosis, let alone the will to adapt her teaching style to help him. It’s no use having teaching assistants who are just mums looking for a part-time job. If they are to work with learning disabled children or those with attention or hyperactivity issues that may be clouding their true ability, the TAs need to be well trained. Some are and sadly, some aren’t. That’s not good enough. Our ASD sons were both treated for a while with medication. But they no longer need it because they are now in the right educational setting. This is not only my view, it was  the opinion of their paediatrician, an experienced and well-respected man.

Parenting wise, parents who have children with difficulties need support. They need to learn techniques to manage their children effectively and I’m not talking only talking about parents from lower down on the social scale. Just because you have a good job or a good education does not mean you come automatically equipped with the parenting skills needed to cope with life in a household where there is constant stress and discord because of the behaviour of one of your children. I know, I’ve been there and I know plenty of other middle-class good parents in the same boat.

Medically, and here we come back to Mr McFadden’s debate in parliament, we need GPs who don’t fob parents off, and we need specialists who listen to parents and who have the knowledge of and access to, up to date research and therapies pertaining to children’s mental health. They need to be able to work with parents, schools and CAMHS together to be able to put the right package of treatment together for the child concerned. Yes, it takes time and money – well they’ve just given £32 million, so there’s cash to be spent. But when you are talking about a child’s future you cannot take a piecemeal approach. Questions such as why is the child having the behavioual isssue – is there an underlying medical condition? Are they dyslexic? Do they have a speech and language problem that has gone unrecognised? A holistic approach is needed. Many of children like these turn out to be gifted in one area or another and need to be given the chance to let their talents find a way to the surface. If nothing else, in the 21st century and with all the research already available it should be within our power to help some of our most vulnerable people to thrive.

Lastly – and this is key. the media should stop being so damn judgemental of parents and children with behavioural problems and yes, Daily Mail, I’m talking to you and your readers who are so quick to condemn and who publish ill-informed opinions and blatant untruths about this already embattled section of society. I believe the reason the Health Minister, Mr Burns, gave such a thoughtful and informed response was because he himself has personal knowledge of the issues. Which just proves the adage about walking in other people’s shoes.

Special Educational Needs – Getting Started With Statements Unique new parent-to-parent ebook launched to help SEN children with ‘hidden disabilities’ get the help they need.

Today my book on is launched as an ebook. Here is the press release 

FARNHAM, 10th October 2011: A mother of two autistic boys from Farnham, Surrey has published a new book aimed at helping other parents navigate their way through the special educational needs jungle.

While there are other books about the SEN system available, this book, by the creator of the www.specialneedsjungle.co.uk website, Tania Tirraoro, takes a parent-to-parent approach, explaining in detail how to prepare an application for a statutory assessment of special educational needs.

Tania said, “Since I started my website in 2008, it’s become clear how daunting parents find the SEN process. Many parents of children with ASDs or dyslexia are affected by the conditions themselves and need help with organising and getting started on their applications. I’ve helped many parents with their applications and I realised that what they need is not an overview of the whole system that you find in other books, but a basic ‘how-to’, written in an accessible way. That is what I hope I’ve achieved.”

The book has a foreword by SEN campaigner and former parliamentary candidate Maria Hutchings, who famously hand-bagged Tony Blair during the 2005 election over the closure of special schools. It also contains a section on what to expect if you end up at an SEN Tribunal by experienced SEN Advocate, Julie Maynard.

Maria Hutchings said, “I only wish that I when I was going throug
h the statementing process striving to get John Paul the right education, speech therapy and respite for the family, that I had read this book. Being the mother of two children on the autistic spectrum, Tania has a deep sense of empathy for what it feels like when you have to fight for everything to ensure your child’s future. Tania captures that deep sense we all have as mothers and carers, to do the very best for our precious children.”

The book takes parents through the process from a very personal viewpoint with examples from successful applications and relevant quotes from the SEN Code of Practice and Education law.

Tania said, “I’ve been through the process twice and my boys, who both have Asperger Syndrome, now have access to the kind of education they need to help level the playing field in their future lives. ASD is a lifelong condition and they will always battle the difficulties of their Asperger’s, but because I had the ability to present their cases methodically, they got the help they need. Why should other children not have the same as my boys?”

The book is available now in all ebook formats from Amazon Kindle and Smashwords.com. If parents do not have a Kindle, then Kindle for PC, ipad or smartphone can be downloaded for free from Amazon.co.uk. It makes this book accessible to every parent, instantly.

It will be available in paperback in the next few weeks.

About the Author:

Tania Tirraoro is an author and journalist and has already published two women’s fiction novels, This Last Summer and Sweet Seduction, one as an ebook, the other available as ebook and in paperback. She is a former television and radio journalist, having worked as a reporter and news presenter for Meridian Television and NBC/CNBC, and BBC Radio Berkshire among others. She also works as a press consultant for three heart rhythm charities.You can find the SEN site at www.specialneedsjungle.co.uk.
Tania’s author site is at www.taniatirraoro.com

Twitter: @TaniaLT  @SpcialNdsJungle

E-Book Links:

Amazon.co.uk | Amazon.com | Smashwords

Tania Tirraoro can be contacted at info@specialneedsjungle.co.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.

SEN Conference and launch coming up in Newbury in October

A two-day conference is being held for parents and professionals concerned with special educational needs is being held in Newbury, Berkshire on 14th and 15th October 2011. The conference, entitled “Towards a Positive Future”  is aimed at parents and professionals, to inspire, share experiences and discover how they can achieve more for children with special needs. The conference is being held on October 14-15 at Arlington Arts Centre, Newbury and has been organised by practitioners Wordswell and social entrepreneur Robert Ashton.

It will herald the launch of a new foundation that will enable practitioners to join together to provide multi-disciplinary specialist services for children with special educational needs. It’s hoped the Clarity Foundation could transform the present fragmented and bureaucratic system. The Foundation hopes to attract health and social care providers, as well as education specialists, to join as members who can be referred to families and local authorities as approved providers meeting statutory guidelines.

The foundation is the brainchild of speech and language therapist Janet O’Keefe and Robert Ashton, best selling business author, social entrepreneur and campaigner, who are passionate about providing a new joined-up efficient system which supports children and their families with educational support, while at the same time eliminating unnecessary duplication and bureaucracy.
There are currently 1.7 million children with special educational needs in England who require support for wide ranging conditions, from dyslexia, dyspraxia and Down’s syndrome, to autism and attention deficit hyperactivity disorder.
Janet says: “We believe that having a one-stop shop is the best way to enable parents and local authorities find all the support services desperately needed by children with special needs, and that our foundation is the most practical and efficient way of ensuring that those services are integrated and coordinated. We need to bring practitioners from health, education and social care together and plan for the future while the present guidelines for new contract arrangements is under review. Our foundation will be a valuable database of all heath and social care providers, as well as education specialists.
“Additionally, we can streamline time consuming and expensive administrative processes. For example, we can help with criminal bureau checks and professional indemnity insurance. At the moment, if a practitioner is not directly employed by a school or local authority, every school they visit should conduct its own CRB check. Many practitioners regularly visit 20 schools a week sometimes in several different counties and are therefore checked 20 times.”
Robert says it makes good sense to become more efficient during the present shake up of these services:
He says: “However you feel about the Government’s “Big Society” agenda, the fact is that the worlds of education, health and social care are undergoing massive change. The Clarity Foundation is being formed to help parents make sense of those changes, and in parallel to help practitioners create their own enterprises. That way both groups can connect, create opportunities and meet the needs of young people striving to overcome disadvantage.”
Specialist speakers include educational psychologist and former head teacher Charlie Mead, who has worked with children with severe emotional and behavioural problems and special needs for 20 years and Kevin Geeson, CEO of Dyslexia Action, who will highlight the impact of the SEN Green Paper.
Janet is also launching a book she has edited at the conference also called Towards a Positive Future which includes stories, ideas and inspiration from children with special educational needs, their families and professionals.
Full details about the conference can be found at their website, Towards a Positive Future: http://towardsapositivefuture.wordpress.com/

The Misunderstood Child – by Kathy Winters

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

The Misunderstood Child
A poem about children with hidden disabilities

by Kathy Winters

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

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

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

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

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

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

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

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

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

Give ASD children the school provision they need

The Times today (Saturday 13 June 2009) has an article about children with special needs being excluded from school. It points to a recent survey showing that 55 percent of parents of children with autism saying their child had at some point been unofficially excluded from school.

Other figures in research by the paper show that although children with special needs make up a small proportion of children in schools, they make up a huge percentage of those excluded. The problem is worst in primary schools, largely because of a lack of resources.

I think that it is not just a lack of resources but the fact that schools are increasingly expected to cope with children with  emotional and behavioural needs as well as autism, with little or no extra training. A mainstream teacher should be just that – a teacher who teaches mainstream children. He or she is not trained to be a special needs teacher and should not be expected to be one just because the government says so-called ‘inclusion’ is key.

The situation is made worse by the lack of specialist places for children with special needs. With the closure of many special schools and lack of places for children with conditions such as Asperger’s Syndrome in the first place, these children often end up with an inadequate education because they have difficulty accessing the curriculum in the same way as their ‘normal’ peers. They also have problems making friendships because they are perceived by other children as ‘weird’ and who wants to be marked out as being friends with the weird kid? This leaves the ASD child socially isolated, sometimes bullied and learning that they have no place in ‘normal’ society.

There are those whom I have heard say (including the Schools Minister Sara McCarthy-Fry), ‘Well, they’ll have to mix with all sorts when they’re grown up, so school is a good training ground for when they’re adults.’  This makes me incensed; so, they should get used to being friendless, excluded, shunned and bullied because it’s going to happen to them as adults? Is that what they would want for their children? Secondly, it is not true that they are likely to mix with all sorts of people when they are adults. We all live in fairly small mini-societies and communities where we tend only to meet people broadly similar to ourselves, unless you are someone where it is your job to mix with all sorts of people such as those in public life or public service (note the word ‘public’). This is hardly the likely career path of someone with ASD. Unless of course, they get the proper training when they are young.

If they can’t get this specialist training at mainstream school because of a lack of resources and expertise, where are they going to get it? At a special school? Don’t be silly, they’ve either been closed or are over-subscribed.

It then falls to the independent sector to fill the gap. These independent special schools usually cost a lot of money because that’s what it takes to provide suitable specialist help to give these children a shot at a reasonable life. I say, if that’s what it takes, then that’s what it takes and the Local Education Authorities should cough up and pay unless they’re willing to find capital resources to invest in their own facilities.

There are good state special schools that can provide for children with severe special needs. But it is those with higher-functioning autism who are left to cope in mainstream school with or without support because there’s nowhere else in the state system for them to go.

My boys, both with Asperger’s, have experienced both mainstream and independent special school. I have nothing but praise for the teachers in their mainstream school; they did their best given the resources and time they had at their disposal. But it was not enough and I am sure they would be the first to admit it. Now at their independent school, they have the vital small class sizes they need, specialist teachers, access to Speech and Language and Occupational Therapy where needed, counselling when required and mentors who keep in close touch with them.

I was told by one SENCo at a good secondary that they could cope with children with Asperger’s and sometimes she didn’t have a problem for ‘months on end’ until something kicks off and it all goes pear-shaped. At our school, this never happens. Things never get out of hand because they are not allowed to. It’s a small school and teachers know what’s going on with the boys so things can’t kick off in the first place. That’s the difference.

My boys are getting the social and key skills training they need to help them cope with the ‘real world’ as well as a good academic education. For them, you can’t have one without the other. I had to work hard to get the LEA to pay for one son and I’m still waiting on the outcome for funding with the other. Until then we’re paying £12,000 a year ourselves which is not easy to find.

The point of ‘inclusion’ is to be included in society when they are adults, not stuffed into a one-size-fits-all classroom in the hope that they may learn social skills through osmosis. That’s politics at its worst, where dogma overcomes common sense and expert opinion.

Well said, Mr Bercow!

I’ve just read in full the House of Commons debate on the second reading of the Special Educational Needs and Disability (Support) bill last Friday. I must highlight one particular section of the bill, introduced by John Bercow MP:

John Bercow: “Hon. Members have referred to the phenomenon of children suffering from autism. We know that children on the autistic spectrum vary greatly, but they all tend to suffer from what is commonly known in the trade as the triad of impairments—lack of social imagination, social interaction and social communication. It is important that we train staff so that we do not continue to experience the problem whereby innocently enough, but very damagingly, professionals in the education sector mistake a disabled child for a disobedient child. When we talk about people on the autistic spectrum being more likely to be excluded from school, let us be clear: that is what is taking place in so many cases. The professionals do not understand that the child is not in any sense a conventionally badly behaved child.

The understanding even of autism, which is a relatively high-profile condition, is too limited. We have to try to stimulate awareness. I was with my young son in a park in central London only a week or two ago. My son has phobias about a number of things, as children often do, and perhaps autistic children do in particular. He is anxious about hand dryers. I have always explained that they cannot do him any harm and are not dangerous, but he hates the sound that they make. When we went to take him to the loo, I said to the park-keeper, who quite properly, has to turn the key and open the loo, “Would it be okay if my son went into the disabled loo?” because I happened to know that it had no hand dryer whereas in the ordinary loo there was one. She looked completely uncomprehendingly at me and at him—I make no personal gibe at her; I am simply making a wider point—and I repeated the question. She said, “But he’s not disabled.” Again, I put it to colleagues that there is an issue of understanding. People often think that to be disabled, someone has to sit in a wheelchair, lack a limb or have a demonstrable and immediately apparent impairment, such as blindness, but children with problems on the autistic spectrum or with speech, language and communication impairments—there is often a close link between the two—can, in some cases, be disabled.”

From one parent of an ASD child to another, well said, Mr Bercow!

Read the whole debate here: Read the minutes from the second reading here

Source: Hansard,

Mother Needs Help For Self-Harming Son

I have just been contacted through this site by Sharon, a mother from Kent, whose son has been excluded from school following incidents of self-harming.

She writes, “My ADHD, ASD, Dyslexic, self-harming son, has just been excluded from school, because they don’t think Luke trying to strangle himself in class or him regularly saying he wants to kill himself, is a good role model for the other pupils. Their answer, discriminate (against) Luke for his disability. He needs support, not rejection and that’s all this exclusion is to him, rejection!”

This is apparently the second time Luke’s school has excluded him. His mother, Sharon, believes it is not Luke’s fault but it is because the staff in his mainstream school are not trained to deal with ADHD or Autistic Spectrum children.

Sharon is at her wits end. She says, among other self-harming incidents, her son has also tried to hang himself in the school’s P.E. cupboard. I have recommended that she contact SOS!SEN. Luke has been refused a Statutory Assessment Kent LEA and his parents have appealed to the SENDIST tribunal, which will be heard later this year.

Sharon says, “It looks like Luke will not have a secondary school to go to this year. The tribunal is only for a Statutory Assessment, then we need to go through the whole process yet again for a statement! We have already been to CAMHS for over a year now. No counselling, he was put on a waiting list for a ASD assessment, but there was a 13 month waiting list for that. The last time we went to CAMHS a new Dr. saw Luke and we now have a diagnosis of ADHD & ASD tendencies. Were awaiting a dyslexia test, and counselling for the self harming, which is quite evident to everyone, but they chose to ignore it, or put it down to bad parenting!”

Sharon says that Luke’s primary school failed to get him the help he needed and his problems are now worse as a result. I don’t know all the details of Luke’s case but it certainly seems to be an impossible situation to be in. However, it isn’t sadly, unique. Why is it that children in severe need of help with psychological problems are so often failed by those professionals around them?

I send my best wishes to Sharon and hope she manages to get the education and counselling for Luke that he deserves. If anyone reading this can offer free legal or medical advice to sharon, please contact me at info@specialneedsjungle.co.uk or make a comment below. Thank you.

Celebrate Calm – well worth signing up for.

I am taking the liberty of quoting from an email newsletter I subscribe to ‘Celebrate Calm, written by Kirk Martin. It is about his son who, like many of our children, marches to the beat of his own drum:

“The following message is very personal and my wife never likes me sharing it, but it seems to strike a chord with people and provide helpful perspective. I wrote this about Casey several years ago–for those who have met him at the workshops, you know that Casey is no longer a little boy (except at heart)!

I look at other people’s kids who are compliant, excel in school and are sailing through childhood. And I really like those kids, I do. At one point, I wanted a child like that and wished I had an easy kid at home. But now? I wrote the following one night after peeking in at my son sleeping. I encourage you to do the same. I hope you will discover some common feelings toward your child.

The Beat of a Different Drummer
I peek in at him late at night lying in bed, fast asleep, my no-longer-little guy sprawled out across his bed, long unruly mess of hair covering his face. . .and I smile. I smile because he is full of personality. He is so different than me in many ways, different than my expectations, different than the little boy I had always imagined. And for that I am grateful. He’s his own person, knows what he likes and doesn’t like. I look in at him, peaceful and innocent while he sleeps. The fight is gone and his little mind is resting. He’s gone full force for the last sixteen hours, he needs a break.

I like it that he pushes the limits, like it that he questions everything, because one day he’s going to do something spectacular. Along the way, he’s going to make some big mistakes, but he’s going to live large and dream large. Underneath the spunk and mouth is a heart not only lined with gold, but filled with it. It is large and feeling, and it wants to do good even when his impulses lead him astray at times.

I think God must look down and confuse him with a little tornado. But I also think God looks down and likes what He has created, likes the little tornado who is growing into a man.

I think He sees Himself in my little boy, funny as that sounds. The part of God who is the Creator, who by the sheer force of His energy and being created life and all that is in the world. The part of God who was willing to step into humanity and persevere on a rugged cross because it would help people. The part of God who walked among men, largely misunderstood, often reviled because He was different and didn’t do things the way the rulers of His era thought they should be done.

But He kept going. Because He, too, had a mission. He didn’t care what others thought. His vision was larger than a mere thirty-three years on earth.

I think God must see Himself in the part that sometimes misses out on earthly things because he’s in tune with something deep inside another person. The part who remains an idealist even when the world around him is less than ideal. The part that isn’t afraid to look into eternity and see better things in all of us.

That is my son sleeping there. We fought each other until we couldn’t fight anymore. Until I realized that I was the one who needed to change, because I wasn’t going to change his nature. Perhaps he has been given to me so that I would change.

That is my son. Sometimes he inspires anger, sometimes frustration. Then he makes me laugh, even smile in resignation. And as I look at him, he makes me cry. He is a wonderful creation. Through all the struggles, I can see the imprints of the Creator.

He is my son. He marches to the beat of a different drummer. Thank God.”

I hope he won’t mind me republishing this but these emails have always been very helpful to me and are well worth signing up for. He also has a range of self-help CDs, and is US based. Find him here: http://www.celebratecalm.com/