Bullying from A child With Asperger’s Perspective

Little man knows more than most what its like to be bullied. While at mainstream he experienced various forms of bullying from public humiliation to more subtly forms like when bullies befriended him for their own personal laughs.

Aspergers Syndrome means little man would at times say inappropriate things without really meaning to cause offence! He also has more intense interests and has a tendency to over power conversations, dominating them with his passions.

Kids pick up on this stuff really easily and little man stood little chance of blending in.

We also started having concerns that little man was starting to unintentionally bully others as a result of this treatment. He would copy things the other children’s actions and he also had a tendency to repeat things they would tell him… They even once told him to slap the teachers face and tell her she was tangoed! He was told that the teacher would no it to be a joke. He soon discovered this wasn’t the case when he learnt he had been excluded yet again.

He became very angry during them last few months he was attending this particular school. The bullying on top of the discrimination he faced by the teaching staff left him confused, worried and hurt. Its never easy seeing a 10 year old boy depressed and asking the question “Why can’t I just be normal?” Especially when that boy is your son.

Since attending his independent special school, his much more in tune with his feelings. He has a better understanding of how people should treat him and equally, how he should treat others. This is all since making friends with children who truly want to be his friend (they have no inferior motives, no ones laughing at his expense). His learnt the importance that surrounds these friendships and the happiness they can bring.

Its for such reasons that my little man has wrote a beautiful heartfelt poem that left a lump in my throat & a proud look on my face.

The pain that bullying brings (by little man age 12)

Bullying is bad it drives People mad.
Be Friends with all don’t be a foul. Children are crying and there are kids dying.
A single tear, it makes me want to cry that kids fell like they have to die.
Make kids smile every once in awhile there are kids sad, it drives me mad. You go on Facebook and tell the world you’re bad but inside your just sad.

Sweet yet powerful… Wouldn’t you agree?

Learning Disabilities, Autism and Internet Safety: A Parent’s Guide

A new guide to help parents of children with learning disabilities and autism is being launched today. The guide, a collaboration between charities Cerebra, Mencap and Ambitious about Autism, aims to help parents limit the risk of their child having negative experiences online and understand what action can be taken if they do. It also suggests resources that will help children get the most out of the internet at home and in the community.

Tracy Elliot, Head of Research at Cerebra explains: “as a national research charity, Cerebra strive to improve the lives of children with neurodevelopmental disorders and brain injury, through research, education and direct ongoing family support. There are real benefits to young people with learning disabilities and autism using the internet, but also potential dangers. We wanted to support parents in making informed choices about internet use and enable them to help their child get the most out of the internet. We know we share this aim with other charities like Mencap and Ambitious about Autism and believe that this joint approach helps all of us promote the message more widely. Some excellent resources already exist around this topic and we have referred parents to those resources, promoting wider awareness of these resources without duplicating effort”.

Use of the internet is on the increase with 77% of households in Great Britain having an internet connection in 2011. Increasingly, children and young people are learning and socialising using online resources. Many children with special educational needs are supported to use information technology in schools to allow them to access their education more successfully. Children use the internet to do their homework, to play games and to socialise with their peers. There are real benefits to young people with learning disabilities and autism using the internet for learning and social interaction and increasingly the internet caters for their needs with accessible design and simplified language.

However, alongside the many benefits it brings to children and young people there are also a number of risks. With access to technology comes the potential for cyber bullying, online grooming and risk of exposure to inappropriate content. This is a risk for all children and young people using the internet but the risk can be more profound for young people with a learning disability as a result of increased vulnerability, tendencies towards obsessive compulsive behaviour and social naivety. Studies have shown that pupils with Special Educational Needs are 16% more likely to be persistently cyber bullied over a prolonged period of time.

Mark Atkinson, Director of Policy, Ambitious about Autism said: “We know that children with special educational needs are more at risk of being bullied online, and for longer, than other children. Such a negative experience can be distressing and disorientating for a young person with autism and learning disabilities, especially as it may take longer for them to understand what’s happening and to tell their families. This type of bullying not only affects a child or young person but their family’s wellbeing too, as we know parents and carers often feel upset and powerless about not being able to protect their child online. Cyber bullying has exactly the same devastating implications as face to face bullying for vulnerable children and their families, and this guide provides helpful strategies to counter it”.

The comprehensive Parent’s Guide gives advice on how to make both home and mobile internet safe and how to prepare your child to use the internet. It identifies a range of potential risks and gives advice on how to prevent/deal with them as well as suggesting how to safely explore the many benefits using the internet can give.

Elizabeth Archer, National Children and Young People’s Programme Manager at Mencap and author of the guide, says: “we so often hear about young people with a learning disability having negative experiences online, but the internet can actually provide great opportunities for learning and socialising. The problem is that many parents don’t know where to start when it comes to protecting their child online and this is where we hope our guide will help. It provides information on how to make your home and mobile internet safe, guidance on how to support your child to use the internet safely, advice on various risk factors such as cyberbullying and criminal activity, and links to useful websites and organisations. We hope the guide will help parents to feel empowered to help their child make the most of the opportunities available to them online”.

The guide can be downloaded from www.cerebra.org.uk or to receive a copy please contact Catherine Hylton, Research Officer at Cerebra on catherineh@cerebra.org.uk.

I Just Want A Hug

I reach out my hand but you pull away, I open my arms and you flinch as if in pain, I open my heart up but you ignore to see the inner core of a heart that’s full of love for you.

Your first day at school you clung to me, arms wrapped so tightly around my neck I felt as though I couldn’t fully catch my breath… You did this for weeks, they blamed it on a detachment problem.

Then one day they just took you from my arms, carried you away while you kicked and punched as you screamed the word “Mummy” through your tears. Your tiny arm was stretched right out before me, your hand flapping up and down crying out for me to take a hold of it (something you never normally wanted). You wanted me to save you and I couldn’t. I cried but was told to toughen up, the tears wouldn’t help you.

“It will get easier” they kept on telling me, yet it didn’t every morning was the same as the one before.

I’d come to collect you, be stood in the playground waiting for you. Other mothers chatted and looked in my direction, some even made comments out loud that referred to me in some horrible way. I didn’t fit in but neither did you.

The bell rang out and as the doors swung open children darted out in all directions into the open arms of their parents. They stand staring as you appear from the doors, look at my open arms and ran the other way. Some could be heard whispering to one another, many laughed as I set chase running like some manic mother fearing her child may make it to the dangerous road outside.

By the time we reached home you were unstoppable, like a bull in a china shop you trashed about as you shouted and cried about everything and anything. I didn’t no what I should be doing to make things better for you, I wasn’t even sure of the issues you were upset about. I know now it was nothing precise, it wasn’t the fact we only had one biscuit, nor the fact I’d made pizza for dinner even though these were triggers, it was the underlying cause that was needing to be fixed. No… Not your Aspergers Syndrome, But your schooling.

We didn’t have an Aspergers diagnosis then… We had nothing but a load of court letters threatening court action for your school attendance that had now started to decrease. I’d try to get you there in the mornings but given you had not slept till 4am you’d wake with such anger. I was tired… You were tired! We didn’t need scare tactics what we needed was support.

Some almost 3 years and 2 court cases later you were diagnosed. I felt both relief and pain. You had been through so much and I’d failed to make them listen. I felt guilt for getting depression when the school just looked at me like some overprotective mother but at the same time some kind of shit one. I was screaming but no one could hear me, I now know that no one wanted to!

I felt resentful to a system that had failed to help me get the support we craved, to our british justice system who fined me what little pennies I had for your lack of school attendance… I felt guilty every Friday I saw my therapist and told him I felt like giving up.

There is a point to this post and for me a very important one…

Labelling isn’t always a bad thing it gives us answers, it gives a platform to start building on.

It wasn’t that my son refused to hug me because he disliked or loved me! It is because he is tactile defensive. Knowing that has helped, OT has helped and cuddles are now given once in a while (even if they are quick they are special all the same).

Without that label that many describe as wrong to give, my son wouldn’t have been able to attend the special school he does today. It’s pretty obvious now that my son’s autism traits such as hating change, poor social interaction and sensory processing were only part of the reason he feared the place he was expected by law to spend 6 and 1/2 hours of his day, 5 day a week attending. Bullying made up part of the fear which consequently, everything combined lead to what I now believe to be school phobia.

Without the label I’m scared at how life may have been today. Could I have found myself sectioned in a Psychiatric ward, I think quite possibly… Yes I could have! Where would that have left little man… Where would it have left his siblings?

Instead I started to get stronger and it was a bloody good job too. We had a lot of battles to come and I needed to be well enough to take them on.

I’m extremely passionate about advocating for families dealing with autism! It should always be understood that its not the diagnosis that is the problem but the carp that often comes with it! We do have to fight harder for what our children actually deserve, what is overly best for them. But to try and get any of these things without a label… Is like a dog chasing its tail in circles.

If your worried your child is on the autism spectrum, don’t let others make you feel bad for seeking your diagnosis. A label doesn’t have to be a bad move it can actually be a really positive one!

Special School – Don’t write it off!

As a parent of a child diagnosed with Aspergers Syndrome and special educational needs, I’ve been through the whole tiresome, wearisome battle to obtain a statement of Special educational needs (SEN) that states ALL of my child’s needs, as-well as providing the appropriate resources needed to meet such needs.

I’ve faced the whole mind-boggling experience associated with searching for an appropriate education setting, somewhere with the right resources to cope with what has been described as my child’s “Complex Needs”

I’ve embarked on the deliberating decision, when it comes down to the choice between Mainstream or Special School.

After many battles for, assessments, a statement, an amended statement & the almighty fight to obtain the right school placement, we finally found ourselves here!

Though it was far from easy, Little man now attends an independent day special school, especially for those children on the autism spectrum, catering for children through their primary and secondary education!

There is no words I can use to describe, how having your child’s needs finally met changes life for that of yourself, child and immediate family! When you finally secure that placement, having engaged in many years of consistent fighting for what only seems a child’s most basic right!

Three years ago, you would have likely heard me stating, “Mainstream schooling was the only form of schooling my child would be attending!” Admittedly, like most parents of children with autism or SEN, today, I was ill-informed, completely clueless if you like, to how special school’s actually operated! Well, why would I be any the wiser, I’d never even seen inside the doors of a special school, in all honesty, I guess I kind of collaborated the little I did know (well, what I thought I knew) to that of what I’d been told, the not so great opinions of others! This of course did nothing other than help produce an image within ones mind, resembling something far from accurate!

My opinion was my own, through it was sadly built upon that of ignorance! I’d naively thought that by attending a mainstream school, my child would learn the rules of socially acceptable behaviour, his “typical” peers would somehow be his social skill trainers, without even knowing the importance of their job, they would actively model how society expects one to perform in life.

Surly special schools could only pull my child under, corrupt his delicate evolving mind, somehow lowering his own expectations of what he could possibly do if truly desired! Those around him would swamp him, drowned him in their world, lower functioning children would draw out his more noticeable “autistic traits” he would somehow feed from them, becoming more and more aloof with each passing day.

Would he become more autistic than he possibly was, mimicking the social behaviour of peers? Would this actually lead my child to become a child who required little if no encouragement, staff assuming he was a lost course? Would it just be expected of him to achieve lower marks than he was typically capable of? Would he therefore never be pushed to display his full potential? Then there was the consistency the overly well organised routines, would this make my child more rigid, therefore more demandingly challenging with a total lack of flexibility within the home?

Right then, at that time, the possibilities, even if conceived from ignorance and lack of informed information, made special school not an option! My ill-informed mind was made up!

Nonetheless, 3 years ago, I wouldn’t have been given the option, regardless of whether he needed it or not! You see, this isn’t how it works, though within time, I came to understand this!

It wasn’t at least till 2-years ago,that mainstream school finally admitted that there were indeed problems (and lots of them)! Little man had gone from the active school refuser,the aloof quite child, to one who could not follow the simplest of tasks. He became far more challenging what with sensory triggers and a string of misconceptions. He was no longer able to contain his evolving desire for peer interaction, though he regrettably fell at every hurdle in his quest to achieve it.

Those that did befriend him, did so as to lead him into troubled waters, always getting him to play the clown while laughing uncontrollably when he got into trouble.

Misconceptions and mixed messages lead to constant exclusions, removal of life’s simple pleasures, privileges such as trips and playtimes.He found himself being taught in isolation, removed from what he knew, despite not being able to fully understand it anyway!

When Little man began stating he wanted to be normal, while bashing his head senseless against a wall, choice no longer had a degree of influence within this heartbreaking situation! Basically I needed him out! Unable to let this situation continue, I removed him from the school!

We filed a claim for discrimination on the grounds he was being treated differently as a result of his Aspergers Syndrome as-well as the fact no reasonable adjustments were being made! The school finally held it’s hands up, just days before the tribunal hearing I had been dreading.

By this point in time, an absolute turn around had occurred! The LEA no longer ignorantly refused to carry out a salutatory assessment of little man’s special educational needs! By this point I’d started training, learning the English Education Act, including those very important sections addressing special educational needs. What’s more I’d also obtain a solicitor (it was one thing helping others to get their child’s needs met, yet my own child’s education was in such a state, the solicitor could only but help)! The addition of letters devised by a solicitor did help to move things along, yes, I’m sure of this! Plus thanks to the appointed solicitor, Little man had now undergone independent OT, SALT and EP assessments, all of which greatly differed from those findings given by the LEA. This was all well and good, yet the discovery of the extent of his OT needs and possible additional conditions discovered by his EP, did cause me to draw one or two tears, before jumping back up into fighting mode!

Little man was no longer being home schooled and I’d managed to get the LEA to provide 5 hours a day of 1-2-1 tuition by a tutor at the local library! This was something that continued for almost 8 months!

A statement was finally produced, though it was better suited to a no frills range at the local supermarket. Parts 2 and 3 failed to include little if any real needs or any resources needed to meet such needs. The LEA were now frantically searching for a stat special school, non in which were even willing to meet him (with the exception of one)! I received daily letters through my letterbox from numerous school’s all stating the same, ” Sorry, we feel that we do not have the resources to meet ******** complex needs”

I’d come around to the prospect of a special school, gone were the days of ignorance, I’d now learnt that there were schools for both MLD and SLD as well as specialist schools catering for children with Autism spectrum conditions. I embraced the prospect of a school that had small classroom numbers, teachers who understood my child’s needs, such great things began to excite me. Given the last few years of hell, that mainstream school had brought us, my views had changed more than a little!

I could now be found saying

“My child will never attend a mainstream school again, not over my dead body!”

Now, this remark was not based on ill-informed opinions, underlying ignorance, but one made from experience, and not a good one at that!

With the discovery of Baston House, Independent Special School for those children holding a diagnosis of autism or aspergers syndrome, which was founded by the lovely Anna Kennedy (activist and a mother of two boys on the spectrum) I had to investigate and check the place out!

The school caters for both primary and secondary children, when visiting there was a handful of pupils but just meeting them along with the staff it become very clear that this was the place Little man needed to be!

I wasn’t under the illusion that it was an easy process, after all this was an independent school. However, with the LEA struggling to find a state school by the tribunal date, they gave up, no longer opposing any of my requested amendments.

This meant that not only did they now amend the statement to include all the recommendations of the independent assessors, making this the largest statement I’ve seen, I received some much sought after news.

Of course these amendments included part 4 of the statement! Baston house school was finally named, and I felt something I’d never felt possible, the up most relief and excitement that my child would now spend his school days in his new SPECIAL SCHOOL!

It’s been around 9 or more months now and we are currently approaching his annual review meeting! He will also move up to the secondary department which is within the same school, making this a less stressful transition.

Life now is a lot different! There are less phone calls from upset angry teachers, not one exclusion *madly touches wood* Amazingly little man has also risen 7 (YES, 7) sub levels in reading (in little over a few terms)! Ok, he still doesn’t sleep much and can’t help to have a supermarket meltdown, but his happier, that much, I’m sure off.

So, has special school caused him to regress? No, it’s actually the best decision I’ve ever made for my son, making the hardest and most emotional grating fight of my life, all now seem worth it! Seriously I wouldn’t change a thing!

So, if like me, you rejected the prospect of a special school, then remember this post! Do what you think is right! My advice… follow your heart, it will show you where to go, there is a school for every child, whether it’s mainstream, special or even at home, you’ve just got to find it!

Related articles

• Mainstreaming special needs children; re-looking at the recent New Zealand controversy (autismandoughtisms.wordpress.com)
• Little man’s special school put Orchard toys to the test (aspergersinfo.wordpress.com)
• Mainstream And Special Needs Schools (growingupautistic.wordpress.com)

Help Me Reveal The Bigger Picture This World Autism Day

Mild, what do you think off when you hear the word “Mild”?

A mild curry, a mild headache, a touch of man flu (or so some call it)!

Maybe you think of a mild case of chickenpox or a mild amount of pain?

Now, let me ask you,
“When you see a child of… let’s say 11 years old, throwing himself  aggressively around the local supermarket, red, hot and flushed,  shouting & screaming obscenities, refusing to walk, with no apparent  sense of danger, what do you think? Does the word “Mild” come to mind?

I didn’t think so!

If you were 100% truthful with yourself, my guess is, challenging, spoilt, dragged up, brat, may have come to mind! Although this is usually  never truth, I’m not about to jump into a written description on the worlds misconceptions or that of the importance of ignorance  (intentional or otherwise). I’ve done plenty of this lately. I will however agree that the word “Mild” is not one I’d chose to describe the above situation!

When you have a child with Aspergers Syndrome, who has displayed such  behaviours..more than once, you deal with it, though when you turn to another and inform them of your child’s diagnosis, for that person to turn around and refer to it as “Mild” you can’t help but want to  
SCREAM…

This misconception has just got way out of hand. Whoever chose to describe Aspergers as Mild was basically of their trolley! You see Aspergers is only described in such a way as to highlight the fact there is normally no intellectual difficulties, however social difficulties are just as pervasive as those children with what some may refer to as “Classic Autism“ the difference being that those children with a diagnosis of Aspergers Syndrome are normally fully aware of their differences, some even referring to themselves as not “Normal” as has my own child.

Those with Aspergers are not oblivious to the world around them… OK,  maybe while engaged in their “Special Interest” but other than this, the prospect that the child with Aspergers wants to engage with peers, having friendships like yours or mine, is always normally the case! The sheer frustration at not being able to always make these friendships or in many cases, keep them, is often too much for the child, hence the reason, so many children with aspergers find themselves diagnosed with depression or some type of anxiety related illness!

Now, I ask you again..”Does the word “Mild” spring to mind when you think of the above  
explanation It’s not a competition, I’m in no way even comparing the different types of autism, it’s a spectrum, where no two cases are ever the same! I’m just merely pointing out that the term mild is not actually a suitable one, as it is of course, taken out of context, leaving  
others (even teachers, and other professionals) expecting more than maybe they should from a child with Aspergers. It’s my belief, and that of many others, that this is likely the reasons behind high school exclusion rates, placement breakdowns in mainstream schools and  
so forth. My child is very literal, yet despite his previous school’s awareness of this, metaphors were continuously used by staff, during conversations with my child! He was just expected to get these quirky little phases, such as “Has the cat got your tongue” or “The teacher can’t hold your hand forever” so, of course being adamant that he never holds the teachers hand, he quite rightly informs the head teacher, to which he is ordered to remove his sarcastic tone, that or stop being thick!

The child with Aspergers, has to continuously adjust ones normal behaviour, something they are most uncomfortable with, to fit neatly into the life, that society expects and accepts.

Its common for many diagnosed with Aspergers syndrome, to receive a late diagnosis! This is true, but only due to the signs being suppressed by the child in question, as they either keep themselves to themselves, blending into the background or speak to one or two children, though not actually forming friendly relationships with them, yet teachers commonly mistake this as healthy peer relationships. What then will often happen, is once that child returns to the safety net of home, the bubble pops and like dynamite they explode letting go of a whole days bottled up frustration, becoming sometimes uncontrollable! Of course the parents reports such goings on, yet they are looked upon as one sided concerns! Teachers mainly assume the issues must be down to some problem in the home, why wouldn’t they considering the lack of challenging behaviour within school? This was certainly the case with Little man!

Suddenly something changes! As the child grows older, incurring a stronger urge for peer interaction, a low threshold for dealing with sensory inputs and lack of understanding of the social rules, Suddenly a flip in the childs behaviour may occur, one that to the school is that of a sudden change, to you, the parent…it’s been a long time coming!

The child may now stand out that bit more, maybe seen as a bit of a social odd ball as he goes about trying to socialise, they may then become targeted by the bullies! Sadly, due to the childs lack of social understanding, especially around the issue of friends, they may well find themselves as a target without even knowing it.  
Little man is, once more a prime example of this….. He was seen by other children to be a child who would easily break social rules (only due to the fact he was unaware of there boundaries)! As a result, when the bullies befriended him, the popular kids, he was proud to finally have a group of friends.This started during his fourth year of primary school and by the end of that year he had already undergone an obscene amount of formal exclusions and when he was in, he was being taught in isolation, heartbreaking, referred to by staff as a health and safety risk! As for the bullies who he mistakenly was proud to name his friends, these would do a number of horrible things, then stand back and laugh as little man got into trouble. An example would be, getting him to slap a teacher around the back of the head with an orange glove, he believed it to be OK, as it was just a game, “The Tango Game” surly the teacher would know this right? You can only imagine the reaction of that teacher! Worse, her unexpected reaction would shock little man in such a way, it would trigger more challenging behaviour, most failed to make the connection between the two and of course his education and self-esteem suffered greatly. As his mother, I watched him slowly putting the pieces together, the children not knocking when they claimed they would, his invite to a party becoming lost in the post, the fact they were suggesting he do things that he was now learning were not acceptable due to the repeated reactions these caused! This is the point when your child starts to accept that his actually friendless, being used and laughed at too! You, the parent watch as your heart breaks, you ask yourself, maybe it would have been better if he never saw the light, he continued thinking peers were his friends.

I hear hundreds of horror stories mainly consisting of discrimination and misconceptions. Like my own child, the child is never allowed on school trips, coincidentally excluded on the day of a trip or that when OFSTED visited school. What was worse was those times he was sent to work in isolation, mother and child completely in the dark that a trip ever existed… well, that’s in till some other mother mentions it! You hear her words, you play along, yet inside your crying,you’re screaming, rage ripping your insides to pieces. Even worse your child finds out, unable to cope with more rejection so he hurts himself by throwing himself into brick walls, smashing his head, scratching his arms drawing blood, or worse still… threatening to stab himself!

Please, I ask you once again…

Would you use the term “Mild” in association with any of that above? Would you?

Myself nor my son, and countless other families like mine, are not asking for your sympathy, your kind words, your half smiles as we catch one another’s eye across a crowded playground, though those things are incredibly thoughtful, we need so much more than this to make a difference!

We, need you to take just a few short minutes having read this post, to process what you have read! If you agree and only If you do… we need your help! I’m asking that those parents & individuals who don’t have a child on the spectrum as well as those who do (and anyone else who’s reading) takes just a few minutes to help raise awareness for autism and aspergers, this “World Autism Awareness Day“ (2nd April 2012)

How?

Bloggers… with the power of your influential voice, your blogs can reach a 1000 voices or more… Please Join me in creating awareness, by wearing something that resembles the colours that make up the autism puzzle or something that resembles autism. Maybe wear a T with the awareness ribbon or a puzzle piece displayed across your chest and back, paint your face, design an eye mask, just let your creativity run wild, then write on a large piece of card, “Doing it for World Autism Day 2012” hold it up, where ever you’re at and take a photo… the more funky and eye-catching the better! Post your picture to your blog adding a few words if you wish, state you’re raising awareness for world autism day and link your picture/post to the linky I’ll place on here on my blog!

You can tweet using hashtag #worldautism12 , post on the “A Boy with Aspergers” Facebook page and share any other way that grabs you.

Please it’s just one day, a few minutes of your time which will undoubtedly help spread awareness! I’m not asking you to raise money or even go to work looking like a clown! Like many other families all over the world, Its world autism day everyday in our house! I’m just  asking you to make it yours on the 2nd April 2012 (if only for 10 minutes) your reward… you will help create a better world for children like my Little man.

Non Bloggers

There is simply no getting away from it! Simply do the above but instead tweet your pictures using hash tag #worldautism12, Post them on your own Facebook page and to make it count by posting them to “The Boy with Aspergers” Facebook Page.

Those who can’t post anywhere, email them to me via address in sidebar of this blog and I’d be happy to post them out there for the world to see.

The final part of the plan

I will then hopefully have enough to create a collage of pictures of all those that took part, whether they held their awareness board in Sidney, London or New York, it will count.This can’t happen with a collection of one or two pictures! We need a huge amount to pull it off!

I will open the Linky on my blog at 11.59 on the 31st of March.

Please feel free to click and save the art work below to use in sidebars or within post, please link back.Please stay tune as there may be a few exciting surprise on the way too 🙂

So… There you have it! My plea for your help 

Help me create the bigger picture, I can’t do it without you!

Related articles

• Look here comes the naughty kid (aspergersinfo.wordpress.com)
• What Is Asperger’s Syndrome? (eatgfcf.wordpress.com)

A great 2011 for A boy with Asperger’s

A boy with Asperger’s 2011

At the beginning of the year I wrote a two-part post covering all the stuff that had happened during 2010 (yes, seriously this took two post and most of it was nothing but bad happenings). So, looking back through 2011 and realising just what an amazing year’s blogging I’ve had, I just had to do it all again.

So here it is, the busiest year on the blog so far, A boy with Asperger’s 2011

January: Not the best month to be honest, we finally get that all important statement of special educational needs for Little man, only toilet paper would have been worth more. Nonetheless we fight to the depths of the earth and it’s amended later in the year and thankfully contains everything he needs thanks to those all important independent assessments & reports.

February: We finally get some good news, which I document in the post, “The end of a chapter” The mainstream school in-which Little man used to attend finally holds up their hands and we get that all important apology in writing, we therefore settle on the Disability discrimination case only weeks before the tribunal hearing. Another great high to February was the invite I received from Cadbury that saw me and a friend attend an excellent Adult only event (no not in that way) we actually tried to set world records doing normal household chores with a twist (making a bed, unravelling toilet rolls and more besides). This was also the month that I got to interview Colin an adult with Asperger’s who had a very interesting message for Mr Cameron.

March: This was a terrible month, the month that saw my eldest Little man (AKA, A boy with Aspergers) get punched in the stomach by a much older youth of eighteen, while playing at the park with a friend and his mother. Little man was just ten at the time and had said “The wrong thing” to a group of older kids, you can read the post “How could that hurt my little boy” for the full story. March was also the month I shared my concerns on the pending Green paper in the post “Aspirations or clever financial alterations”

April: I’m contacted by the lovely Anna Kennedy in regards to her ‘Autism and bullying’ campaign, as a result of this little man appears in an ITV news report which I wrote about in the post “Little man’s television debut” which was perfect timing, what with it being autism awareness month. I also highlight how appearing on the television went to his head a little resulting in him asking everyone and anyone “Do you know who I am”

May: It was this month I wrote one of my favourite post to date “I’m no Vicky Pallord” I also discover that I’m nominated for a Mad blog award shortlisted in two categories, “Most inspiring blog” & “Blogger of the year”

June: Brings with it a fresh start for the Little man when the local LEA crave in before yet another tribunal, agreeing his place at his independent special school for children with autism and aspergers. This was also a really exciting month in the world of blogging, I was featured in two local papers, making front page news in “The Southlondon press” with the Headline “Mum sets blogging standard” & I was also featured in the “Newshopper” both highlighting the news that I had become a finalist in the Mad blog awards 2011. I also got to attend my first ever Cybermummy (blogging conference) and with it the blog received it’s first ever sponsor Londontown.com who paid for me to stay in a beautiful hotel on the night of the conference.

Nonetheless, although the above is all fabulously exciting, June was also a very emotional & overwhelming month, what with Little man adapting to his new routine and little sleep, it resulted in me writing this very open and honest post “falling apart”

July: This was the month I started the Santa’s little helpers feature resulting in me working with some pretty spectacular brands, we were also invited to the multimedia screening of Mr Poppers penguins in London’s , Leicester Square. Alice-Sara brings her friend who are both  excited by the odd celeb spot. In the middle of the month me and the children attend the Pandemonium festival in Northampton to celebrate the release of kung-fo panda 2 as VIP guest of Cadbury. The children get to test the new mini games, Harley becomes obsessed by the panda himself and we eat lunch next to the ambassador of china (Yer, I was praying that Little man didn’t treat the guy and his family to a demonstration of a meltdown, “Asperger’s style”)! Myself and Harley my youngest also attended the Boots bump to Baby event in London’s beautiful Haymarket hotel where Harley took a shine to the lovely Rachel Stevens and the boots clothing range (from the pic below who would think his only 18 months here). July is also the month I treat readers to an up-date on the amazing progress Little man is making at his new school.

August: A busy yet crazy month as I celebrate the publishing of my three page article in the SEN publication (please check it out by clicking HERE if you haven’t already). Myself, youngest Harley, sister and her daughter get invited to the tots event of the year, “The lollibob” where we go VIP and the kids have a blast meeting the likes of Bob the builder, Peppa pig and Ben and Holly from the Little Kingdom.

August was also the month that saw chaos unfold in the devastating London riots. I organised a Lewisham riot cleanup on twitter with the use of the hash tag #lewishamriotclean and from then on everything went a little mad, what with being interviewed for the BBC breakfast show by Gabby in the back of a taxi on the way to Lewisham following a sleepless night due to the sounds of rioters looting the supermarket directly across the road. Then as myself and Little man (yes, he cleaned Lewisham too) stood in Lewisham with a dust pan and brush waiting for fellow locals who I’d rounded up with the help of social media to join us, I’m shocked to discover the BBC are there to greet us. Yes, they interviewed me and followed my progress throughout the day, I later cringed watching myself on the 6pm news, in a report that seemed to go on for ever. My use of the quote “Lewisham is cleaner than usual” following the councils own operation seem to be something of a hit and spread across the papers and internet like wide fire! The images of Little man clearing up outside JD Sports still melt my heart and make me mighty proud.

 

August saw us working with some great brands, Micro Scooter & Meccano to name just a few. Little man also has great fun testing sensory toys this month and I try to raise awareness for child mental health by opening up and writing “Just a Little girl”

September: This is a month that holds some great memories for me, not only did myself and some of the other Mad blog award finalist find ourselves invited to TKMaxx London’s flagship store to choose evening dresses and accessories for the for the Mad blog awards ceremony but I also went on to win ‘Most inspiring blog 2011’ at the awards itself, which was held at the fabulous Talk-Talk experience centre in London’s Soho. Not only did I win, get to meet a host of other fab bloggers but I also experienced a great working relationship with my mad blog awards sponsor ‘OptiBac Probiotics‘.

With all the above going on I really don’t know how I managed to squash in one of my most popular post on the blog to date, “How well do you really know your child’s teacher”

October: was a month that saw the blog working with some pretty big brands such as Sainsburys & Argos, I make two local papers again having been interviewed by the SouthLondon Press and the Newshopper on winning a Mad blog award! Little man takes over the blog, (well, kind of, he finally says how he feels in his first interview, for the blog) where he talks about his Asperger’s, discrimination, bullying, feeling different and acceptance, click Here to read.

November: I’m delighted to become a judge at the BBC Christmas ideal home show for the face of Argos competition which was an amazing experience. I’m invited to lunch by Sainsbury’s at the BBC NEC Winter food show where I also get to watch a live Master chef cook off, I have a great time and meet some awesome people at Liberty’s London when I attend a charity event and I also start working with the wonderful ‘John Crane’ and ‘When I was a kid’ check out the post ‘Joining Forces‘!

It was in November I wrote the post “Merlin’s Magical wand helping children benefit from the magic, well that is unless they have autism” which had 2,000 hits within a few hours and is the busiest post of 2011!

December: The last month of ‘Santa’s Little helpers’ I therefore launch the ‘Santa’s Little helpers, the big christmas countdown’ we feature loads of fantastic competitions with awesome prizes up for grabs. I also get invited onboard P&O ferries to take a trip from Dover to Calais alongside the lovely “Romanian mum where we shop till we drop, and to end such a fabulous year’s blogging, I’m lucky enough to be invited by the fabulous Tots100, to it’s big Christmas party at Butlin’s Bognor Regis where myself, friend and children get to stay in the beautiful Ocean hotel, though Little man finds the change a bit hard to bear.

Wow, there it is, what a year!

There’s been some massive ups and as you can expect one or two downs (what do you expect, this isn’t a fairy tale you know!) But you have to admit, it’s a massive improvement from 2010 that sadly along with 2009 saw much stress and heartache, which just proves, you never know what’s lurking around the corner!

I really do hope that ‘A boy with Asperger’s’ has provide readers with smiles, laughs, entertainment, inspiration, awareness and more!

Merry Christmas and a happy new year to all my amazing loyal readers
We love yer!

A step in the right direction for autism thanks to Anna Kennedy

I recently contacted Anna Kennedy as I read about a new dance DVD she had developed for children with autism and aspergers syndrome. 

 Anna’s DVD, ‘Step in the right direction’ has been produced in association with the world-famous, ‘Pineapple performing Arts school’ in London and a selection of children from the Hillingdon Manor school who each have a diagnosis of autism spectrum disorder.

 Anna was kind enough to send me a copy of the DVD to review with my Little man.

 Little man used to love to dance but as his grown older he does it less and less. I thought it would be great to try to encourage him to give it another go.

Little man is a child who requires a certain amount of Occupational therapy (OT) due to his difficulties with both his fine and gross motor skills, including varying areas off his co-ordination. 

 Once I had received the DVD I decided to watch it while little man was at school, just so I could get a taste for what it was all about before finally introducing it to the Little guy himself. 

 This DVD has been broken up into manageable pieces allowing you to skip between sections.

 Part 1

Introduction by Anna Kennedy

Anna Kennedy

 Anna Kennedy, founder of Hillingdon Manor school, kicks the off  the DVD with an introduction that sees here shop for pineapple dance wear for the children before heading off to the Pineapple performing arts school in London’s Covent  Garden.

 Part 2

Interviews

 Once here she introduces the viewers to some of the dance instructors at Pineapple including, ‘Maggie Paterson’ (Senior teacher) ‘Jade Flannagan’ (Senior teacher specialising in Street & Break-dance) as well as the schools founder, ‘Debbie Moore’ Anna interviews Maggie & Jade about working with the children and what their expectations were before meeting them.

 Anna, then goes on to interview Debbie who tells us about her incredible journey in fulfilling her dreams when opening what is now the world-famous school of performing arts, while taking us on a trip down memory lane.

Debbie Moore

Lastly all the children introduce themselves alongside Anna who then goes on to get them all warmed up in the third chapter of this dance DVD

 Part 3

Tutorials

This is where we get down to the business and following a great warm up section with Anna and the children, Jade steps in to show us some poppin’ lockin’ & tuttin’ (some really “cool” dance moves). Jade starts by teaching us at home the routine, he does this in easy to follow bite size pieces repeating each section a number of times before finally putting it all together and joining the children where they go on to perform the routine, incorporating some really cool freestyle dance moves, which for me was the highlight to this DVD. 

 It was great to see the children dancing, the enjoyment was clearly shown on each of their faces in the form of a massive smile! 

They are all clearly delighted to be taking part in the making of the DVD and should be extremely proud of themselves and one another for the fabulous routines they participated in and awesome freestyling they displayed. 

 The tutorials are finished off with a cool down with Maggie and the children.

 Section 4

Special features: Britain’s got talent finalist-James Hobley

Anna with James and his mum Sheila

Here Anna meets James and his mother, Sheila Hobley who tells Anna about what life is like for James (how he overcomes many off the difficulties children with autism experience, while fulfilling his ambition and dreams to dance). We learn about the barriers James has overcome and  difficulties he faced while participating in the ‘Britain’s got talent tour’ as-well as his hopes and dreams for the further.

 James goes on to show Anna some of his moves, to which she has a little difficulty keeping up with 🙂

We then get to see a delightful recording of James Hobley’s own routine.

 Lastly Andrew Stone (Star of sky 1 Pineapples dance studios with over 30 years of experience in dance, music and television) works with the children of Hillingdon Manor school on a small and final routine bringing the section to a close. 

 Section 5 &6

Useful Information & Additional Materials 

 In the last two sections 5 & 6 you can discover a little more about two of the sponsors behind the DVD, ‘MedicAlert’ (who Anna helped create the AK autism band) and ‘Childline’ (the UK charity backing Anna’s anti bullying campaign). 

We are then provided with the website address for “Anna Kennedy online” where we can read and download a number of fact sheets about the benefits of autism and dance.

These can be found at Anna Kennedy online.

Click HERE

Our Verdict

 Little man did have a go at the DVD and seemed to enjoy doing so. (He did however get a little upset when I tried to film him so we gave that a miss.) 

 His sister, ‘Alice’ who isn’t on the spectrum also enjoyed taking part, although she did spend half the time catching a glance of her self in the mirror. 

 In my opinion the routines are great! They have been put together in an easy to follow way and are not overly long, resulting in the children actively maintaining concentration throughout

 The music was fantastic, some really great tunes that made me want to shake my bootie too. 

 Anna engages the children in a great warmup routine that both myself and the Little man followed together.

 Jade Flannagan is the perfect choice for the main routine as his young and hip and the children really seem to relate to this guy.

Jade works with the kids really well and keeps them motivated with lots of positive praise and encouragement. One thing I did pick up on was there was no use of the word left and right within the choreography! Instead Jade used visual clues alongside instructions, like, placing a hand on his right arm along with the instruction on what to do, indicating that the children and viewers were to use the right arm. For me, I think this was a good idea, as the children did not become confused at the use of to many instructions at one time.

 The freestyle was the best part for me. I just loved seeing the children demonstrate their moves as their confidence was beaming throughout!

 I would highly recommend this DVD as an introduction into dance for children on the autism spectrum and even those without! I think it’s especially beneficial to those who seek lots of sensory stimulation. Children on the autism spectrum who discover an interest in dance, would benefit both physically and emotionally from such an activity. Such benefits could include, improved co-ordination skills and overall fitness and stamina, improved social interaction skills and the ability to follow more complex instructions, and importantly, development of their self-confidence which may be pretty low for those who have experienced incidents of bullying or isolation. Another excellent benefit that I found was, your child is more likely to sleep better if they follow the routines on the DVD in the evening. I know that Little man slept better on the evening we reviewed the DVD so this must be a great way to get rid off some of that excess energy our children on the spectrum always seem to have.

 The interviews were fantastic but are mainly aimed at the parent, though many children wanting to get into dance could really find themselves inspired by watching Anna’s interview with the fabulous talented James Hobley.

 Thank you Anna Kennedy for providing us with this great DVD.

We loved it!  

You can get a copy of this excellent DVD from Amazon priced at a reasonable £7.99.

Just Click HERE

Related articles

• The day my boy got his smile back. (aspergersinfo.wordpress.com)

How well do you really know your child’s teacher?

How well do you know your child’s teacher? This Is a question I’ve had to ask myself a number times!

After a recent discovery, I would suggest you ask yourselves that very same question, regardless of whether your child has special educational needs or not!

Here’s why…

A few days back I made a horrid discovery that meant I had to continue on with my day with this great anger manifesting within me.

I had this inability to filter out the hideousness of it all, my blood was boiling and a thousand questions bashed away at me.

  Last year I joined the TES social network and forum. No, I’m not a teacher, however It was during a period of home schooling my Little man as a way to avoid permanent exclusion. I have seen some things on the site that I normally take with a pinch of salt, yet a few days back, on receipt of a monthly newsletter that changed.

The TES website is the main and biggest UK resource for educators or those working within education. It contains job listing, a resource centre, the latest updates in relation to education, a forum covering a large area of subjects up for discussion, downloads including work-sheets etc, and much more.

On opening the email I discovered the updates were all mostly aimed at new teachers in-way of tips and advice. As always I had a quick scoot through to see if there was anything in relation to SEN (Special educational needs) and the pending ‘Green Paper’ when something caught my eye. 

The header read: NQT (Newly qualified teachers) Advice

and under that a link that read,

“Arm yourself with a few of those tried and tested one liners and you’re ready to deal with the thickest pupils” 

 curious I hit the link and was taken to the TES Forum

It was here that I unearthed one of the most disgusting threads I have ever read.

This thread contained over 600 comments from UK teachers, there was over 60 pages and posts,  dated from 2008 to the current date.

This thread contained one liners and put downs provided by teachers, these contained methods of humiliation, bullying, discrimination, sarcasm, abuse, threaten violence and inappropriate  language (including that of a sexual content)

Now before I go any further, please let me explain why this thread had me so mad it had reduced me to angry tears!

First the comments were worrying and the one liners should not be used on ANY child, the way the teachers spoke to each was worrying, and the names they publicly referred to us and our kids, Sickening!

Secondly, My own son with Aspergers has been treated in such away and as a result he has self harmed by smashing his whole body into brick walls, banging his head and scratching his arms till they bleed. He, like many others with some form of autism, tends to take things with a literal interpretation meaning the use of  metaphors and sarcasm are most dangerous.

Below is an example taken from a screen shoot. This key stage one teacher isn’t particularly rude, however the way in which she speaks about her young pupil is cold and frightening. She states he winds her by not sitting still and continuing to touch children and objects (playing with their hair etc) I don’t know if I’m correct, I’m just a parent, but some of what she describes here highlights possible autism traits or SPD even.

All she wants to do, is give him a right telling off, but instead choses to mock him in front of his peers.

Classy!

If this child does have a condition like those I’ve stated above, or some form of special educational needs, this will undoubtedly knock an all ready low self-esteem.

Is this how you want your 7 year old treated when at school?

Now, Im sorry if this post is rather long, it would have gone on forever if I the time to include the high number of comments that outraged me so much I blogged about it!

I have taken some screen shoots but will not be able to include them all, I shoot over 100, So, I’ve also quoted a few of the so-called “tips”, and hideous boasts provided by what are meant to be highly qualified teachers.

The fact is, that there are over 600 comments within this one thread from Teachers who started commenting back in 2008, when the thread was started and happily continue on today in the same disgusting manner is highly wrong.

There were only a handful of outraged teachers who left comments to state their shock at some of the comments left by those who are sadly in the same profession, however they just responded by mocking them and starting nasty argumentative comments, nevertheless it was comforting to see one or two teachers who cared.

With over 600 comments, what’s the chances that one of these teachers is the teacher of your child?

Maybe not today, maybe not even next year, but one day!

I say let’s speak up for our children!

Lastly, before I share some of these shocking statements, I ask, how is it, that this hasn’t been picked up by the media?

Has it? if so why don’t most know this thread exists?

What ever the reasons, it’s worrying that our teachers are quite openly sharing these sick so-called ‘Tips’ while laughing their arises of at our children.

I warn you, If your easily shocked, then GOODBYE you really should stop reading NOW!

Below is the very first comment (which kicked of the thread in Januray 2008)

‘I’m having a real problem with behaviour at the moment. I’m not very good at quick responses to pupils comments. I know I shouldn’t get in to a discussion with them but I’d like to have one liners to use.
Can anyone think of any common things pupils say, and a quick come back that works. Other than of course just ignoring it, which I try to do with most silly comments.
Here’s one…
“This is boring..”

OK, guys here are some of the responses and in no particular order! (Note I corrected many of these teachers spelling mistakes, that’s shabby)

“To the usual issue between students with one complaining.. sir he…

‘Hold on….. you are mistaking me for someone that cares….. sort it out without violence’walk away and ignore the 2-3mins of poor behaviour” 

“There a fine line between comebacks and getting aggressive to get your revenge – normally the line depends on how much sleep I’ve  had”

“I teach a mixture of abilities in years 10 and 11. I remember a particular individual being silly and making the odd comment. My reply on one occasion was “how Jovian”. The individual thought this was a good thing. But the brighter students knew. They knew I was referring to the Jovian (as in the planet Jupiter) atmosphere between his ears. . . . Dense and uninhabited.”

“To a very mouthy, arrogant year 10 kid, who constantly demanded my attention “Miss, I NEED HELP NOW!”.

In a gentle, caring voice: “I know sweetheart, but you’ll have to accept it’s going to take some time. I’ve spoken to various pyschologists and psychiatrists, and we’ve agreed that, with a careful program of support and intervention, we may be able to help you”  

“What’s wrong with verbally flattening pupils, showing them up, if it’s what they need?”

“48 – Excellent answer.

22 and 44: “Are you gay?”

Reply:
1. “No, but thanks for the offer,”

2. “No, but I would be if I thought my next kid would turn out like you.”

3. “Let’s keep that between us.”

4. “No, but I’ve slept with a few people who are.”

5. “Yes, but I only fancy attractive people, so you’re safe.”

In regard to self esteem, if dwarfs can threaten me with violence and imbeciles can call me stupid, I think they’re not lacking in self esteem, merely in contact with reality: if they don’t meet defeat in the safe environment of me answering them back (however uncaring this might seem), then they will in later life when someone less patient punches their lights out (which is rather more uncaring.)”

“Y9 boy, ‘Sir, why do you support Millwall, they’re s**t!’

Me, ‘I know, but you’re ugly & your mum still loves you’.”

Whenever a kid says something along the lines of ‘You can’t tell me what to do, you’re not my dad’ I reply:

‘No, if I was you’re dad you wouldn’t be so ugly’

Today a child working said “this is shlt”. My reply was “Your work usually is!

“Ooh, ooh! I just can’t wait for September now I’ve seen this!”

“When some little darling is swearing at you say! Please stop swearing, you’re not at home now”

“To a child who is being loud, unruly, unco-operative etc:
“Look at Brett everybody, he’s forgotten to take his pill this morning. See what happens when you forget your pill”

 “Child: You’re gay sir

Teacher: Even if I was, I wouldn’t  fancy someone as ugly as you! Child: you’re a  crap teacher

Teacher: Perhaps, but at least I can read and write”

“Me muttering when walking away; ‘soap in a sock….leaves no marks…’
they look worried at that, think you have gone mad…”

“This is school, not the Muppet Show. “

“Best one ever was;

kid: ‘Do you use contraception miss?’

during a year 9 PSHE lesson. I was speechless for a second and then responded with;

‘Yes, I usually stick your photo to my boyfriend’s forehead, and it seems to do the trick!”

At which the other kids collapsed laughing and after about ten minutes of looking blankly at his exercise book, the kid in question said ‘Are you saying I’m ugly?”

 

“one of the best I heard was pupil to pupil.

Pupil 1: you’re f*cking ugly!
Pupil 2: yeah, well your mum ain’t complainin’ !”

“Ah bless, are you finding this really difficult? Usually works…”

“I have also managed to convince my class that the IWB projector, smoke detectors and alarm sensors in the school contain cameras-I’m sure this wouldn’t work with any children older than KS1 …’
Actually it still works with Year 9!”

Just remember that the Government plans to up teachers powers when dealing with behaviour!

Can you just imagine what will happen then?

Click here for the TES website & here for the thread in question.

Please leave your comments to show your thoughts and help get some action.

Related articles

• Michael Gove: Children need to be taught an unambiguous lesson in who is boss (telegraph.co.uk)
• Help approaching a teacher – (ask.metafilter.com)
• There is no such thing as Good or Bad Labels…they’re all Bad (ontarioeducation.wordpress.com)
• Taking the Special out of Special Education (ontarioeducation.wordpress.com)

Just a little girl (part 2)

Just a little girl (part 2)

This is a follow on from the post, ‘Just a little girl (part one)’

OCD was now a big part of my life. I can only describe it as a nomality.

As a ten year old child I found it far to powerful to battle. In many ways it made me who I was a paranoid little girl.

Though the fear of fire still gripped me, I now had a far greater fear, “Death” No one told me that the cancer within my little sisters body had the power to take her life! I just kind of knew! This petrified me and practically sent my OCD into overkill!

I never took chances, I couldn’t afford to miss a nightly prayer! I forced myself to continue with the rituals, over and over again.

Looking back, I can see why my, “Odd” behaviour wasn’t picked up by my family. Life was manic which in many ways made the OCD easier for me to hide! Yes, though OCD was a big part of my life, I still knew, deep within, that my behaviour wasn’t the, “Norm”! OCD may well have been a nomality to me, but it wasn’t for everyone else, it was, “strange, weird, odd, carzy and a little bit loopy” Did I see myself as a crazy child? Yes, I guess I did!

This was nineteen years ago, I didn’t have google to turn to. As far as I was concerned, their were no others like me. This fact a lone made it far harder to even comprehend telling anyone, so at this point nobody knew, (and if they did, they never said so)!

There was no discerment, I didn’t know why I made myself carry out what I knew deep down to be pointless actions. Yet, the OCD just obscured any practical thinking this ten year old had, leaving me relentless to it’s powers.

Despite my OCD and my sisters illeness, my childhood was a happy one. I loved that I lived with both my mother and grandmother. I remain close to my father despite him not living at home with us.

The years that my sister was seriously I’ll must have been the hardest and most tiresome in my mothers life. My mother had always worked & continues to this very day. Rachel was so sick my mother was forced to take leave. She was now frightened to leave her daughters bedside. Rachel’s care was now shared between three different hospitals, ‘Lewisham’ (our local hospital) ‘Great Ormond St’ (the London based hospital for very sick children) & ‘Barts’ (another London based hospital with a specialised Cancer unit). My mother didn’t know if she was coming or going.

Only now as a mother do I fully appreciate just how difficult a time this must have been for her.

I remember all to well the effects, ‘Leukemia’ had on my sister, who was nothing but a toddler when it struck. I was visiting her at, ‘Great Ormond St’ once, when she throw up all over me, resulting in me needing to go home wearing an operating gown, (which clearly displayed my underwear at the back)! Lucky for me, we wasn’t using public transport, (as we usually would)! My uncle was with us, meaning we would be going home in the car.

Another strong memory I have is my sisters, “sudden” hair loss. I remember this baby with beautiful, thick, floppy, White blonde hair. What seemed like over night, it was all gone leaving her with nothing but a completely bald head.

Children at school would say the most nasty things, like, “Hows your little brother?” I would often fall for it, replying, “His fine, thank you” only to be laughed at and told, “Not that brother, your little bald one”

I look back now and see that, “yes, they were just silly little kids who didn’t understand, but at the time, I just wanted to hit out at each and everyone of them!”

I do remember one particular occassion, my sister was allowed home for a few days (very rare) I danced with her in my mothers rooms. She was dressed in nothing but a nappy. It was a very warm summers day and I could her the children playing outside. I had no desire to join them, I just wanted to be with my sister. As we danced I told her I loved her, in my head I was praying for her not to die! That’s one of my strongest childhood memories.

As if our family hadn’t had enough bad news, things were about to get worse. Not long after my sisters diagnosis, my first cousin on my fathers side of the family, was hit with the very same cancer! I can’t remember how old she was, older than Rachel, just a few years younger than myself I think! This means she was 7 or 8 years old at the time. Can you begin to imagine, both my father and his sister were parents of two very sick little girls, battling leukemia. I will never forget my mother shouting at my father, “But they told us it didn’t run in families!” You have to agree, this seems like more than a coincidence, it was almost as if God had it in for us.

Well, I’m pleased to report that both my sister and cousin are now healthy young women, both each with a beautiful daughter of their own. Both fought the scary C word we all fear, both came out the otherside.

By the age of 12 and fast approaching a, “Teen” things started to go a little bonkers for me. I started secondary school, took up smoking and was fast becoming a rebel. The nights remained as bad as ever, so during the day I just wanted to enjoy myself, have some fun. For the first time in my life I noticed makeup and boys. I watched when the, “popular girls” applied their makeup, tied their ties shorter, while rolling up their skirts. This was what I was becoming! The toilets become my regular hangout, where I would smoke my way through lessons.

It was during this time, that I started to pay attention to what I ate. So much talk amongst the girls involved the topic of, “Diets”

Looking back now, this scares the hell out of me. Yes, I don’t want my own daughter who is eight to worry about her weight at this crazy age. As 12 year olds, we were far to young to take on such issues! Yet here we are in a day and age where girls as young as 7 (maybe younger) have been known to have body hang ups. This is something that causes me great sadness!

Me, I was a stick, (so to speak). I was a healthy child, a girl who could eat what she wanted yet remained naturally silm. Some of the girls, who I wanted to mix with, the ones I were convinced were the, “In crowd” openly discussed how they made themsleves throw up after dinner, how it was a win, win situation, you could eat what you wanted and remain silm… For fuck sakes, we were just 12 years old! By the time I was almost 13 I was doing this regularly. This was despite the fact I knew I was thin, I didn’t even think I was fat! Yet, it was now more then a habbit, almost an addition. Worse, Bulimia now mixed in with the OCD resulted in an explosive combination. Combined, the OCD now controlled the Bulimia. Life was about to hit an all time low.

The last part of my story will follow soon. Just a little girl (part three) will be the final post which concludes my story. Please return to find out the ending.

Note the story has been written to raise awareness of some of these issues, why highlight why I have an understanding of some of Little mans difficulties. Although I don’t have Aspergers, I do relate to his OCD behaviours and is over anxiety.

Time to find your voice.

This is a post of utter urgency! It’s a plea  for help from the wider community. Does your child have autism, special educational needs or problems in school? Maybe they don’t, but who knows what the future holds!

I was sat at my mothers yesterday checking my emails when I came across something most frightening… A life line for parents of school age children faces the big axe due to funding cuts,’ THE ADVISORY CENTRE FOR EDUCATION’ better known as ACE.

Ace is an invaluable DfE telephone support service who offer advice to parents of school age children on education issues, the main one’s being exclusions, admissions, special educational needs, bullying and discrimination. If your child has ever been exclude like mine, then you have properly used ACE at some point, to advise you on your next steps and whether the exclusion was carried out in away that is considered ‘legal’. The service offers free advice and is normally a parents first port of call. Exclusion letters will often contain the telephone number for ACE, one day I decided to use them. I was offered top notch information that was inline with the education act, I was provide with much needed assistance when I didn’t know where else to turn. The following day I received a free exclusion guide in the post, considering it was 4:00pm when I had called, I considered it an excellent service.

Ace, highlighted some real serious problems for me, including the fact Little man had been illegally excluded twice! If I had never made that call I would have been none the wiser and my guess is the unofficial exclusions would have continued. I rang ACE a significant amount of times over a two year period, with every call I was offered beneficial advice. I feel so strongly about this and was most upset that this service that has offered support to thousands of families for the last 50 years, would no longer be able to operate as they have been informed that funding will stop at the end of the month.

Now you maybe thinking to yourself as you read this, that its of no importance to you, but how would you feel if it was? This is a life line for many and is just one services that parents like me will lose! Unfortunately this isn’t all we have to worry about! Us parents to children with special educational needs as facing a host of possible changes, that in my opinion will only see our children in a more disadvantaged state then ever before. The pending changes thanks to the green paper already pose a huge degree of uncertainty, resulting in possible changes to the law, yet a huge reduction in services to support parents through this worrying time. If that wasn’t bad enough, we face the prospect of losing the right to gain legal aid which many families rely on when challenging schools and local authorities by taking them to the SEN tribunal.

So, lets take a long hard look at the facts. Big sources of parental support face closure due to funding cuts; the new health and social care plan is still very unclear; the removal of legal aid for education cases will be withdrawn at this critical time! Anyone would thing it was some kind of deliberate attempt to reduce the amount of claims being brought against LEAs and schools, not because the child’s needs are being meet… No, simply because parents will no longer be provide with sources of information on their current rights; will lose the right to have access to the legal advice needed or even instruct solicitors! What’s even more terrifying… Parents will lose the lifeline they once had to gain independent medical reports to ensure their child’s needs have been fully documented by those instructed by the local authority!

People need to remember these are children we are discussing! Many will claim that the parent should not relay on such handouts, yet it should be acknowledged that many of these parents are not in a position to engage in paid employment, what with many of these children needing home educating or solely being left out of education due to there being no suitable school placements… I cannot see what a parent is left to do?

I had to apply for legal aid to ensure Little Man’s old mainstream primary school received training in special educational needs. We settled a few days before the hearing as we were given a full apology, the promise of SEN training and a re-write of the schools sen policy. I then had the comfort of knowing I had at least tried to stop the treatment my child received being inflicted on others. I also needed the legal aid service for yet another appeal to the tribunal, for the contents of little mans statement of special educational needs lacked details of current difficulties and provisions to address such difficulties. This time my solicitor applied for funding to gain some essential independent reports, that without… my claim would have little success of winning. Little man received three appointments for three independent assessments that would gain us reports for legal purposes! I wasn’t prepared for some of the things I read in these reports and although I knew my sons difficulties were far grater then any documented by the local authority. I was sadden to see just the extent of how different these were. Although the reports highlighted such valuable information, they would show the disturbing differences between the two. Without such reports it is likely I would have never of known the extent of my child’s difficulties! Although little man can speak I now know certain degrees of his speech and language are considered severely delayed! Other important issues included the possibility of dyslexia and Little mans impaired motor skills. Its extremely possible that my child who will now attend an independent special day school designed for children with an autistic spectrum condition, would have been left to struggle trough a mainstream school, face permanent exclusion or as once suggested… be educated in a pupil referral unit.

Many of us are guilty of saying nothing myself included. We tend to complain once the affects have surfaced and we find ourselves and our child in a troubling situation. Its to late then, the damage is done. There are enough off us to get heard…

I ask everyone of you to consider the above and ask yourself if we are being provide with a service that will better meet our children’s needs or place us within a system that is far worse then the one we currently battle?

If you agree with me and my god, I hope you do! Please get yourself heard. Ace are asking for everyone’s support.

Here’s some suggestions on what you can do.

1. Contact urgently Sarah Teather MP and urge her to review the DfE’s recent decision not to fund ACE from the end of June this year.

2. Contact your networks of colleagues and urge them to write to their MPs.

3. Contact your own political colleagues, in the House of Lords or House of Commons, asking for their support for ACE.

4. Publicise our situation via your websites, asking for support and (if possible) donations to help us carry on our work.

5. Contact ACE to discuss how you can support us.

Please remember that without our help, ACE will lose there funding on the 30th June and will no longer be able to provide us with their expertise.

Other things you can do

You can also respond to the SEN green paper by the end of June

Join an online campaign to stop legal aid cuts, such as TREE HOUSE

Start a petition

Write the your MP