Tag Archives: discrimination

When special interest turn deadly

29 Jul

I like blogging, you like reading!

I’m a bit obsessed with twitter, shopping and art! You really love football and Facebook!

Admittedly some of us over indulge our sense with our interest, we spend a little to much time tweeting or playing a computer game when we could actually be doing something much more practical. However, we are fully aware of this naughty bit of pleasure seeking and therefore find ourselves eventually applying some self discipline. A good example of this would be a person needing to go to work, they may want to stay home engaging in whatever it is they love doing but they understand that this won’t pay the bills (that is unless the work is their interest)!

As some may already know, little man has very intense interests and these are what one would refer to as a “Special Interest” when I write about little mans interest I struggle to find the right words, especially ones powerful enough to create a visual picture in the readers mine. For these reason I often worry that those who have such little understanding of Aspergers Syndrome and special interest, may only ever really compare this to that of the above.

20120729-212516.jpg

Today I’m going to try and change this by telling the story of my sons special interest! The intensity and love he holds for such a subject. The high intellectual knowledge which he has gained from self educating himself on every aspect this subject has to offer. The smiles & laughter it has created as well as the comfort and sanctuary it has given him.

Yet as great as the above may seem like everything there is a downside, and like most things associated with Aspergers Syndrome there is no in between!

The Little man happily unrolled the toilet roll around the entire house, he was making tracks for his invisible bus to drive along. Little man was that invisible bus. He could visualise this as long as he had one or two props to create a front and back to his bus. He would use a spoon held in one hand for the front, and a pencil in the other hand to create the back! Let’s not forget the sunglasses he would use to recreate the motion of the doors a long with the continuous beeping sound he would make. He would walk around and around for hours, speaking in a monotone voice as he recreated the destination announcements heard on both trains and buses.

I would feel a degree of anger when people stated a child like mine lacked imagination skills. This needed expanding on so those who had no idea began to gain a better understanding. Yes, little man played the same game over and over again. He was mimicking something based on fact not fiction, yet his creativity was seen when he used imagination to think outside the box. Rather than play with a toy bus, he was the bus! How many children would think to use a spoon, sunglasses and pencil in such a way?

From the age of around 2 Little man started to show an interest in transport. This started with Thomas the tank engine, but having quickly discovered the fiction that surrounds Thomas he turned his attention to the real deal. As he grew he would try to suppress his interest within the school setting making them much more intense once home. His great love for the subject meant it was hard to engage him in anything else. There were many sleepless nights, it’s easy to turn of your child’s computer and demand they go to bed, but I was unable to demand little man switched of his mind. He would go to bed and just lay in the darkness randomly running through bus and train timetables and destinations, often beeping and recreating the motion of the doors with his hands.

Despite the late nights, constant transport chat I embraced little mans interest! When he wasn’t allowed on school trips we had our own at the London transport museum. We took random bus rides around the city and went to toy fairs in search of old rare models. But when things become very bad at mainstream school I noticed Little man becoming completely lost in his world of transport, the only place he felt safe! When excluded from school he would sit studying the various routes of trains, tubes and buses, he would not answer when called totally ignoring request whenever I made them.

Bus trips were no longer fun, he’ll police the bus, demanding passengers picked up any rubbish they dropped or removed their feet from the seat in front of them. On trains he would jump from his seat every time the train came to a stop, pressing the button to open the doors for those passengers getting off and on.

I also noticed that he would continuously slide open and shut his wardrobe door that featured a sliding door. The banging was hard to cope with especially come 3am when siblings were sleeping.

What worried me more, was the more emotionally stressed things became, especially within school, the more he would confine himself to the bedroom where the slamming would commence.

We eventually had an appointment with his paediatrician, we were currently in the middle of a discrimination battle with school. I had now removed Little man from the mainstream setting but was still looking for a special school willing to take him. The stress upon the family was apparent. It was during this appointment that little man discovered that the windows within the paediatricians office were of the sliding type. Of course he couldn’t resist to play with them and for this reason the paediatrician was able to see just how obsessive his interest had become. She wisely informed me that this was not only due to his very intense special interest but also a stress reliever, coping mechanism. We also elstablised that to a certain degree the repetitive sliding motion of doors or hand mimicking was a sensory seeking behaviour too.

It was only on this appointment did we discover how serious this was. A practice fire drill went off, little man is very bad with the high pitched noise one makes. He panics and becomes very unpredictable so when he didnt even look up, just carried on with the window I knew Little mans special interest was now deadly!

A plan was put together and I was given the hardest task of my life, to reduce and limit the amount of time little man spends on his interest. OK, I couldn’t switch of his brain but I would need to limit the other activities, especially the sliding of the doors. It was hard to be consistent! In many ways I felt half to blame. I had encouraged his interest but this is what I was always expected to do, it was always said to be a good thing! I don’t feel guilty anymore. I now understand that it’s important to support and encourage your child’s interest, what happen to little man was not my fault.

As the stress faded, once he found his perfect school, things did start to return to a more acceptable level. Now he likes Lego too and even stranger WWE wrestling has actually become his interest of choice. Yes he still likes transport but WWE is his special interest and in my opinion it’s a welcome change after 10 years.

20120729-212618.jpg

My Daughter is on the SEN register – School never informed me

4 Jul

My last two post have been about my recent court appearances in relation to my daughters school attendance being 80%. As to gather evidence to defend my case I wrote to the school under the Freedom of Information and Data Protection Act, requesting access to my daughters school records.

The first folder handed to me was a yellow folder, inside was information relating to her Special Educational Needs… Excuse me… What Special Educational Needs (SEN)?

I had asked both verbally and in writing if my child had sen! When taken to court for school attendance a few years back, they asked the LEA if my daughter had SEN… The answer was NO! School reports have been given and academic review meetings have taken place… Yet, no one mentioned the word SEN, No one ticked the SEN box at the bottom of reports… NO One!

My friend accompanied me to the school to look through her file. You see while fighting for a statement of sen for little man and during a discrimination battle with the school I had requested his record and it was filled with shocking discoveries… I didn’t want to be alone.

I sat with the file shaking in my hand, tears rolling down my cheeks, I couldn’t speak, I was angry and sad! Lies… Lies… Lies!

I was never told my son was on the register, not even during the period of time he was being assessed for Aspergers Syndrome. School told CAMHS they had no concerns… They held up the diagnosis period for almost 2 whole bloody years.

My son was placed on the school’s SEN register in 2005 as soon as he started school… I discovered this in 2009!

(luckily little man now attends an independent special school)

My daughter still attends the school and despite my outrage and arguments with the school for not fulfilling their legal duty of informing me that my son was on the SEN register, they have done it again…. Why?

Alice-Sara placed on SEN register in 2009, I discover she is on the SEN register Monday 2nd July 2012, some 2 years later.

The law states

The Education Act 1996 s. 317 requires Governing bodies of schools to… Inform the child’s parent that special educational provision is being made for him there because it is considered that he has special educational needs.

I looked at the SENCO in the face when I asked her if my daughter had SEN a year ago… She lied. Every time I brought up the fact I wasn’t told about Little man being on the register, her defence was that she wasn’t the schools SENCO then so their is no point complaining to her! All the time she had placed my daughter on the register and was lying out her backside.

They didn’t tell me as they didn’t want me to use it against them in the discrimination case and when I attended court for attendance!

She is on the register as she has issues with literacy… She is said to be great a Maths.

I was left feeling guilty… Like I could have done more to help her.

I cried… I wasn’t assumed of her… I just felt sad… I don’t know why!

I have a meeting with the Head teacher tomorrow! I have questions, the same ones I asked about my son! I want to know why they continue to do this. After all I bet the LEA were aware of my daughter being placed on the register, the school get extra funding for those that are.

It’s now a new head teacher and the SENCO left a few weeks back (I wonder that if she was still there, would she of allowed me to get my hands on that yellow folder?). I guess this will result in a lot of blame pushing. However the governors have failed my children and all must be held responsible for this.

I’m tired of fighting but I won’t let this lie. I’m currently looking for a new school and writing a letter of complaint. Once was enough but twice… That just takes the piss!

20120704-185458.jpg

School Gate Ignorance

28 Jun

I had to write this.

Strangely following my blog post on school exclusion I was directed to a blog post by a fellow parent blogger regarding school trips and how a planed special trip organised by the head teacher for pupils who had “Not received a pink slip for unacceptable behaviour but instead done well on the schools reward system” had now been cancelled.

The Head teacher who promised the trip has now had to cancel it due to a parent complaining using the equality act.

Understandably parents were disappointed including the writer of the blog post. However most of the comments shocked me, making me release that some parents “May never get it”

I guess many of them commenters don’t have a child with SEN or even autism. Maybe they are not a parent like me who has a child who will always receive the pink slip for unacceptable behaviour no matter what he does! I feel for everyone of them children who lost out on the trip, it’s highly disappointing and very unfair for a child to feel such disappointment (believe my Child knows). However as a parent of the child who will never receive a gold star, I would never comment In the same way most have. It’s like some kind of witch hunt. Parents want the parent who put a stop to the trip named and shamed… Why? SO… there child can be bullied?

Now, I don’t even know if the child who’s parent has complained even has SEN, but in my experience the use of the equality act and that of the sudden change in plans make me assume so! I wonder if the child involved is like mine, a child who never got to go on a trip no matter how bloody hard he tried! I wonder if that child goes home and cries into his pillow because he feels rejected once again. I wonder if that child like my child, whacks his head against brick walls trying to make sense of it all, trying to actually pin point where they actually went wrong. I wonder if that child began scratching his arms till they bleed just because they were not allowed to attend yet another school trip?

Maybe I’m wrong… Maybe it’s none of the above, maybe the child is just dam right disobedient and needs a good taking down a peg or two… Who knows!

You see that’s my point! You don’t know! As a mother of a child who was discriminated against, a mother who’s child was naughty just for farting… That could have been me and if it was, to see those horrible comments… It could have broken me at one time of my life for sure

Quite honestly, the head teacher should have known better, reward systems don’t work for every child. My child would be on a red card daily because the way it worked didn’t work for a child on the spectrum like him. It took sometime but he was removed from the system and followed a different type of behaviour programme. This situation is even worse for the child who is undiagnosed slipping through the system branded a trouble maker.

Ignorance hurts, especially when it’s done when the facts remain unclear. I hate school gates and try to keep away from them! Why? Because its a fest of back biting and bitching and I just don’t have time for such crap. What type of message does this give our children.

I felt as if I was stood at the school gate as I read such comments, I felt like I now stand out like a sore thumb from many of my fellow bloggers just for writing this.

I may lose followers over this… But I don’t care… Honestly!

I blog from my heart and it’s my heart this is pouring from!

Think before you judge another especially If the picture remains unclear. We parents should stick together, the world is hard enough for our children, we shouldn’t make it any harder.

#HAWMC Day 27 – Difficulties and Victories

2 May

Now admittedly I am writing post 27/30 in the “Health Activist Writers Month Challenge” (#HAWMC) some 5 days overdue and yes I still have 4 more post to write (this one included). As its now May, a brand new month, technically the challenge has come to an end but come on, cut me some slack here! Mother of three demanding little monsters and them monsters come first. However, having come so far and not being a person who gives up on things easily I am determined to see the challenge through to the very end!

So… The 27th challenge was to give my top 5’s. These consist of the top five things I find most difficult as a parent of a child with Aspergers Syndrome as well as my top five victories (the things that kept me going when things got tough or the battles we over come)!

Now having bashed my tired brain for a while, I finally compiled a list for each, broke it down to the required number, explaining my reasons for each.

Things I find most difficult

1)Sleep: Yep, it has to be the total lack of sleep! Yes, this is more difficult than the meltdowns, swearing and black and white thinking style (such a thinking style can create problems). I often state that I’m used to the crazy sleep pattern that has been part of my life for donkeys years and as a result I’ve adapted my body clock, but in all honesty, despite this being true it really doesn’t make it any easier! Some days I’m fine where others I’m seriously having a hard time dragging my own arse around the entire day. I snap more easily, cry at day time TV and not really dig the huge black bags that dangle under my eyes most days.

2) Anxiety: Little man can become extremely anxious about the “smallest” of things. He can get so worked up that he loses himself in a thick fog of panic. Little man needs lots of reassuring when his like this! He may ask the same thing continuously, take many trips to the toilet and pace about loudly speaking to himself. His even been know to quite literally worry himself sick!

3) Discrimination: This is not a trait but something that comes with this diagnosis and many others besides. Discovering that those that are meant to do the best by your child, are actually treating him in a way that sees him extremely disadvantaged to that of his peers, is a terrible thing to witness as his mother! The fact that my child starts to become aware of this treatment, makes the situation one million times worse.

4) Days Out: These are meant to be enjoyable but yes, I do often find day trips and holidays quite stressful as does little man. This sometimes restricts our options, if deciding to embark on any spontaneous trips I need to do so at my own risk. Nonetheless, good planing and preparation is the key and combined have resulted in some good days out with little problems.

5) Meltdowns: As if these acts of built up exploding stress wouldn’t make my list… Of course they would! What can I say except who really wants to deal with screaming, swearing, crying and violence! But above all else the most difficult part of parenting a child with Aspergers is actually having to see your child become that overloaded and at times not being able to make things better for them! No mother wants to witness they’re child in this state.

Victories

1) Diagnosis: This itself is a victory, as to finally have that label actually opens more doors to services and support. I’m not starting you no longer need to fight for things, but without that label you have even less chance of getting anywhere.

2) Results: Having fought some almighty battles to obtain everything from acknowledgement, respect, suitable education, fair treatment and more, I can tell you it really isn’t easy! You discover that those you put your trust in are those you may need fear most! It’s tiring and at times you feel like just throwing in and trowel. You don’t, you just keep going and when the good finally happens its the most amazing feeling ever!

3) Progress: Watching the progress my son has made since attending an independent special school is wonderful! When your son goes up 7 reading levels over a few terms you know you made the right choice.

4) Rewards: Every time my little man receives an award at school whether it’s for improvements in behaviour or that of his learning progress, I’m overly proud. Of course I feel the same for my daughter, but these are things little man never received in mainstream and it’s lovely to see how such achievements rebuild his fallen confidence.

5) Inspiration: The inspiration my child’s diagnosis has given me to bring awareness and support to other parents of newly diagnosis children.

So, there you have it, my little list of 5’s.

This post is 27/30 in the #HAWMC

#HAWMC DAY 17 – Learning the hard way is often the only way

20 Apr

He stood before me, his expression was one of seriousness & confusion…

“Miss xxxxxxx I don’t know what you’re trying to suggest here, but we both know that you made the decision to collect and take your son home, nobody requested you do so!”

Speechless, I felt my whole body tremble. It wasn’t fear but a mix of both anger and shock! This surely wasn’t how it was meant to be! This was… Well, just wrong! 

“Excuse me, but you called me and had me collect him, you know you did!” 

He stared blankly at me as he made a continuous  shaking motion with his head. Suddenly it hit me… If this man could stand before me telling porkers then he could surely do the same when discussing any situation relating to my child. Now, I always believe my child when he tells me something though he does have this unintentional habit of exaggerating a situation a tad so. Now, I’d never again question his words, especially if it had anything to do with his head teacher!

You don’t really ever expect to receive a call from your child’s head teacher requesting you collect your child immediately because they are unable to contain his unpredictable and challenging behaviour, especially when they have always claimed he has no issues at school, implying it’s a “Home Thing!” This is even more surprising given the fact it’s suddenly a recurring event, one that is now being denied! 

This was the kick up the behind I needed to learn everything education related. This included, school’s and LEAs statutory requirements, the SEN code of practice, Education act and anything else related to SEN.

Of course my first discovery was that of “Illegal Exclusions” I therefore quickly got legal advice before putting my findings to the Head teacher and those other professionals attending the current meeting. I half  expected to be thrown a few excuses but to stand and look me in the eye and lie… No, I didn’t expect this!  

Feeling a mixture of sickness and disbelief, I asked myself where we’d go from here. Deep down I knew this was the beginning of a battle… I guess I just never expected it to be so tough!

Yes, this is one of many incidents that happened during Little man’s mainstream schooling, in fact this is a pretty mild example! 

Some of the events that followed were truly horrifying! Exclusions on a weekly basis, especially on days of school trips or special events… He even got hide away while ofsted inspected the joint! He was taught in isolation like some cage animal and the bull shit keep following. 

On one particular occasion when I was collecting Little man from school as a result of yet another exclusion, it was claimed my son had called the head teacher a “Wanker” and I openly agreed. Now… although I did pretty much by this point consider him to be just so, the incident was one that never actually occurred whatsoever, it was all based on lies. Another occasion was in relation to a weekly trip the children made to the local allotment. It was agreed I’ll attend so little man could go! However, on this day I was informed of a staff shortage with the result being a cancelled trip. 

As I sat enjoying the mid-days sun while sipping a lemonade through a straw as I enjoy my last few hours freedom which I happened to be spending with my sister in my mother’s garden that lays directly opposite the allotments. Suddenly, I’m greeted with the most worrying sight. Sitting up I flick my sunnies from my head down to my eyes in order to get a better look! Surely not… No stinking way is that them! But it was, it was all of them, the whole class minus one!

I wasn’t mistaken as a child recognised me and waved… though they were no more than 15ft away the teacher failed to spot me, though I spotted him and god that made me angry! 

I felt my eyes begin to water beneath my oversized sunnies. My sister looked a me, her face a picture of pure horror, she asked… “Claire… what are you going to do?”

“Nothing!” was what I answered!

On collection from school I asked the Little man’s Teaching Assistant what the children did instead of attending the allotment… as expected, I was feed so more bum fluff!

Of course now I was pushed to a limit… With this and a whole host of other sad events I filed a claim of “Disability Discrimination” I had my fighting boots on and I was adamant that I’ll pull them down and show them to be the “True Professionals” they really were!

I’d be lying if I said it was easy! There was tears, lots of tears. Lies… so many I’d lost count months ago. Reading the schools response to my claims I truly saw how corrupt they were as I saw a filed document being used as evidence. This document was a timetable of the allotment programme, it claimed that 2 schools (one being theirs) had agreed to swap days that week, they claim it was this group of children I see! 

A week before the hearing I agreed on a settlement. I  removed my son from the school but I needed to not only have the schools lies revealed as just that… Lies! I also wanted my child to be given a full apologise while it was of great importance that this terrible treatment didn’t continue on in this manner. 

Having rejected a series of written apologies while suggesting alternative wording for the next, we finally got there. The Letter apologised for different incidents as well as stating it would review it’s policies and train its staff in SEN with a certain date attached as a deadline. 

What exactly did I learn the hard way? I learnt that those we often put our trust in are the ones we sometimes should fear most. I learnt how money and funding truly comes before the child when it comes to that of education. Lastly I learnt that I’m stronger than I ever thought I was!

Special School – Don’t write it off!

12 Mar

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!

Help Me Reveal The Bigger Picture This World Autism Day

6 Mar

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!

Update from Merlin’s Magic Wand & the NAS

24 Nov
An attempt at a discrimination graphic.

Image via Wikipedia

I thought given my recent post regarding the Merlin’s magical wand charity and the possible discrimination against children on the autism spectrum, I should share with you all the latest developments

Today Merlin’s Magic Wand Have made a statement on there facebook page. I visited the page only to discover that all comments have been removed and this has been left in there place.

In the light of recent conversations on this site and elsewhere we wanted to clarify the objective of Merlin’s Magic Wand – which is very simple. We know that there are many children facing difficulties of all kinds – illness, disability or social issues – who would benefit greatly from a day at one of our attractions, when they can just have fun with friends and family, and get away from everyday concerns. The aim of Merlin’s Magic Wand, through the provision of tickets and grants, is to offer this opportunity to families who might not otherwise be able to visit us.Unfortunately our resources are not unlimited. As more people have become aware of the work of Merlin’s Magic Wand, and the number of individual applications has grown, we need to explore new ways of managing these. We believe that in the future the best way to reach the maximum number of different children will be for us to increasingly work in tandem with specialist organisations – charities, support groups and educational and social services departments – who have direct access to those who would benefit most, and the communications channels to spread the word. More than this, given our aim must always be to give as many children as possible a magical day out, rather than the same children an annual outing – we also believe that working with partner organisations will better ensure this. Finally such partnerships will leave our small dedicated team more time to develop our activities into new areas – taking the magic out to those children who will never be well enough to come to us. We make no apologies for this. That said nothing will change until we have alternative arrangements in place and ALL eligible children should continue to apply through our websitewww.merlinsmagicwand.org, where full details are available.

We would therefore like to take this opportunity to apologise unreservedly to anyone who was confused by some recent communications, or who interpreted them as in any way discriminating against children with autistic spectrum disorders. That was certainly not our intention. The National Autistic Society is undoubtedly one organisation with whom we are in discussions, but with the express aim of making these tickets more widely available and certainly NOT to limit access for those with autism or any other issue. We would also like to reassure anybody that might be concerned that if children are fortunate enough to be allocated tickets as part of the Merlin’s Magic Wand scheme there is, and never will be, any charge for these.

We have taken very seriously all of the comments posted over the last couple of days relating to this subject, and we hope that this statement will reassure you all. If anyone still has concerns however please feel free to contact us direct offline on mmw.enquiries@merlinentertainments.biz.

Furthermore the National Autistic Society have also left this update on it’s facebook wall.

National Autistic Society

Hi all,

We’re aware some people have had questions about our involvement with the charity Merlin’s Magic Wand. We hope this will address those concerns.

Children with all disabilities, including those with an Autistic Spectrum Disorder, can apply directly to Merlin’s Magic Wand for free tickets to Merlins’ 25 top UK family attractions.

The NAS is currently only exploring ways in which we can help Merlin’s Magic Wand reach more families who have children with autism.

The announcement by Merlin’s Magic Wand of our involvement was premature and once we have finalised precisely how the NAS will be involved we will let you know.

Both the NAS and Merlin’s Magic Wand want to reassure anybody who might be concerned that there never has been, nor will there be any charge for tickets allocated through the scheme.

Applications for tickets can be made through their websitehttp://www.merlinsmagicwand.org

Hope this helps clarify things and thanks for everyone’s patience.

National Autistic Society

Image via Wikipedia

So there you have it, Merlin’s should have thought twice before sending out such an email, they do not apologise and claim they did not mean to come across as acting in a discriminating way! Sadly they did and in my view, unless Merlin’s change the application process for all applications then they will be continuing to act to do so!

Watch this space!

The comment from a child with autism

6 Nov

Have you ever logged onto your blog to be presented with a comment that brings tears to your eyes within a second of reading it? I have!

Writing the blog, ‘A boy with Aspergers’ has not only helped me express myself, giving me a platform to put down my thoughts, share our trails and tribulations, celebrate our achievements as a family, a place to off load both the good and not so good, but it’s so helped me to connect with other families like my own. I have always hoped that other families draw comfort from my words, somehow relate and feel they are not alone! There are many parents of children on the autism spectrum, that have commented one my blog and when they state how the blog or facebook page has helped them somehow, I feel inspired to write more.

But what if its not a parent, teacher, carer or other that comments on your blog, what if its a child, one who is on the autism spectrum, a young teenage girl who within a few simple words manages to share her likes & dislikes, express her lack of happiness with the world she lives in, as well as the things she longs for most as a teenager? She didn’t want the latest mobile phone or a tenner to go see a movie with a friend, no! She wanted something that most of us take for granted, either that or something we don’t fully appreciate. Below you can read the words that I read when opening my blog today, the words of one teenage girl on the autism spectrum…

I am a girl who got Autism. Who can’t really make new friends too hard me make really upset.
I am a girl who really like to handwriting a lot, liking to make the teacher laugh!
I am a girl who like to dance, listen to music, go on a computer or on a laptop.
I am a girl who sometimes repeat her self.
I am a girl who gets wind up all the time.
I am a girl who gets into trouble a lot.
I am a girl who get pick on a lot.
I am a girl who need to make a new friends who i really trust.
I am a girl who is feeling really alone.
I am a girl who always staying in at play times sometimes.
I am a girl who really need to gets help.
I am a girl who really talk anyone.
I am a girl who feels like getting push out of stuff.
I am a girl who always put same things!
I am a girl who really need a new friends who can keep secrets and who I really trust of a best friend.
I am a girl who feels really alone.

Note these words have not been edited in any shape or form & the original comment can be found over on the page “Autism love list” located under the header above.

The stranger who got right on my wick

31 Oct

I like to write about the positive side to Asperger’s after all the first two years of this blogs content, was filled with nothing but rants, brought on by a mix of discrimination & my battles in obtaining appropriate education for Little man.

 However, I’m really sorry to do this to you all, but this is in-fact a “Rant” 

 Sometimes life isn’t all rosy and you need to unleash the not so good stuff… Today is one of those days!

 There are a few things troubling me that I need to get out my head and onto the blog, somehow just letting my fingers do the talking for me, helps me to adapt my mood and somehow go about getting on with things.  

 Now, the first is one that I’m convinced most will read and think, “Get Over It” and to be honest if you did, you would properly be right in thinking this, I should just “Get over it” I know this! However there are some days when something like this happens and it’s just the icing on the cake (so to speak)! 

 What am I rambling on about, I haven’t even told you what it is troubling me, yet here I am trying to justify my own thoughts! Well, basically I am hacked off by a person I’m pleased to say I have never had the privilege to meet, a complete and utter stranger who really shovelled a generous amount of judgemental bull in my direction! 

 So what! I deal with this shit daily, right? True! However I wasn’t in the most stable mood this day (Note this was a few days back) I was actually darting to a Halloween party in an attempt to save my panicking 11-year-old with a diagnosis of Aspergers, from a pending firework display. My iPhone pinged and alerted me that I had mail (email) this is when I discovered the comment below. 

I was reading that one difference between boys with aspergers and girls with aspergers is that girls mimic people around them and end up blending in with neurotypical people. I believe aspergers has a genetic base. I think you and your daughter also have aspergers. It also sounds like you favor your daughter over your son, and he notices and resents it. The most annoying thing with mothers with aspergers is that they think the way their children are acting is somehow done on purpose just to frustrate, like they thing they are the center of the universe, them when in fact children with aspergers are just trying to do what’s best for them.

  Yes, I’ve had crap like this before but this however really rubbed me up the wrong way. Now here’s what drives me that bit more crazy… You get dealt this type of ignorance, become somewhat fired up, yet all you can do is leave an angry “Mind your own business” reply, containing a fair portion of swear words (which I just about reframe from adding) as well as a load of typos that occur as a result of your mad frantic typing! Then you wait… and wait… In reality I don’t want to get into some full on bitching match with this numb nuts above, yet somewhere muddled within the haze of my angry mind, I want to see his response and I want it now! Yet it never comes, ever!

 I’m my head I was screaming you cheeky patronising *#¡# how dare you read just one, just one post and think you have the right to judge me as a parent! 

 What’s more, what right do you think you have to diagnosis not only myself but also my daughter as having “Aspergers” Goodness me, you have never even met either of us. 

 Oh… and you can cut the other crap about my son acting out his aggressiveness in the direction of his sister because he feels she is my favourite, thankfully you really don’t know me.

 Yes, this asshole thinks he knows it all, when actually he doesn’t even know the slightest. I don’t care if the individual has a diagnosis himself or is even a parent, he still has no sodding clue about me and my family!

 Here’s the thing people! I spend hours punishing myself mentally, due to the guilt I feel every single day! Guilt towards my daughter! Why? Because she deserves so much more attention then I have been able to offer. I spent days and nights, writing to schools, filing in complaint forms, collecting evidence for a discrimination case and more besides.

Then there were and still is the trips to CAMHS (child adolescents mental health service) the nights he sleeps in my bed though his far to old, yet if my daughter asks I have to state she can’t and this is purely because Little man would never sleep and likely complain with every movement she made. So, why not refuse to let my son? Consistency is sometimes hard to withstand when its 4am and his been sat outside your bedroom door since midnight in tears! 

 So, when I sit there thinking about this stranger who I have never met, sat at his computer typing this judgemental bull, when this mother has not had a wink of sleep in three days I tend to become a little bit touchy! 

 I would like to state quite loudly that although I love my son with Asperger’s and try to activity embrace the diagnosis, No, myself nor my daughter have Asperger’s.

How this conclusion was drawn from that one post almost makes me want to roll on the floor laughing but at the same time really rattled my cage!

 Now, here comes trouble number 2! I’m worried that once more, yet on a worse scale, my son’s aggressive and growing violent behaviour is going to draw to a serious end but only when his seriously hurt someone (who knows, maybe this won’t even draw an end to it)! 

 At 11 years old his tall for his age, and is no longer the skinny little boy he once was. His gaining strength and today he punched and kicked me so hard I feel to the ground. This was only after he had finished with his sister and I’d tried to intervene. 

 I hear the same thing from high-end professionals who claim that removing the trigger will solve such issues, but what if the trigger is his sister, seriously she only has to like something he likes for him to feel it’s justified to give her a dig. Planned ignoring wont help either! You can’t ignore one of your own children who you love dearly beating the hell out another, it’s just not  worth contemplating. 

%d bloggers like this: