Let Me Tell You About Matthew!

I only met Matthew a week or so ago, his not even really a friend of mine.

The story of how we met is an important, yet interesting one, that goes something like this!

So, it was late… Gone half past one in the morning. A friend was staying over at mine which meant she was able to watch the children while I dashed to the 24hr petrol garage at the end of my road. Now I don’t normally make a habit of taking late night trips to the garage, but there are times when a girl needs some chocolate and this was very much one of those times.

So… Moving on… Matthew who I was yet to meet, was being quite loud as he walked across the car park leading to the garage. I thought that maybe a couple of lads had likely drunk to much and were now on their way over! Well, I was wrong!

Matthew, around 20 years old, dressed in all the latest clobber (stylish trainers, jeans and a hoody) was walking with a middle aged man and a dog. By now I was busy trying to direct the woman on the other side of the glass window around the shop floor like some crazy lady as I demonstrated a string of erratic arm movements and silly actions in order for her to select the items that I wanted! (seriously, her face when I showed her 5 fingers indicating that I wanted 5 cream eggs was a picture.)

Matthew was now stood staring at me, admittedly, I did feel a little uncomfortable at first! Back at the glass window Matthew then started speaking to me. In all honesty, he wasn’t making much sense when he grabbed ahold of my arm while laying his head on my shoulder and requesting I take him home.

By now a reasonable length queue had formed. People were trying to keep their distance from Matthew who was now making his way down the queue asking those in it a string of strange &random questions mainly surrounding the topic of what car they were driving.

I looked at the guy with the dog, he smiled and shook his head saying… “I’ve just met the young lad can’t seem to shake him off” I nodded as I stroked his dog.

“How do you know his name?” I asked.

“He told me” he replied.

He then went on to state…

“Actually he wouldn’t stop talking about motoring, how certain vehicles are made, who makes them and so forth”

With that something clicked within my head…

“No…. surely not! No… I’m reading to much into it” I thought.

Now, I had paid for my items and should have been heading home. It was late after-all and I didn’t want my friend to worry but something inside me just stopped me from leaving.

Matthew was now stood by my side. He was telling me he was cold and asking for my coat. I explained that I was also cold and that my coat was designed for a woman and wouldn’t actually fit him.

At this point an extremely rowdy woman dressed in very little and so obviously a little worse for wear shouted “For Goodness Sake, he don’t want your coat his going to rob you, you silly cow”

Moving my eyes in her direction, my request for her was that she should simply shout up.

By this point I had decided that I’d probably been gone long enough for my friend to call out a search party so turned around and started to walk away.

The middle aged man and his dog were now ready to leave and I could hear him talking to the dog as he walked behind me. Suddenly I felt the sensation that someone was incredibly close to me. Before I knew it these hands just grabbed ahold of my shoulders. Throwing my whole body around I see Matthew!

“Oi Matthew, Get Off her” Cried the guy with the dog.

“What do you want?” I asked. Followed by the question… “Matthew.. Are you Ok?”

He was now crying, begging that I’ll walk him home. He then went on to tell me through muffled speech that the drunk lady had gone and told him to fuck off!

Something wasn’t right! Matthew may have looked the part, young fresh faced, nicely clothed with one or two cheeky one liners.

Matthew so clearly wasn’t drunk and if he was planning on robbing me I’m sure he would have done so by now!

As I took hold of his arms to move them from me (his grip had become tight and uncomfortable) His sleeve slightly shifted from his wrist and there it was… An ID bracelet. Taking his arm I held it into the light to get a closer look. “Matthew… Do you have autism” I asked as I looked up into his eyes only for him to quickly look away.

“Well, he can’t have!” said the guy with the dog who had come running to my rescue”

“He… He looks so normal” he said as he shook his head in disbelief. Yes, I guess he was displaying a certain amount of ignorance, though intentional this was not! Actually this man was one of the only people in that queue who actually didn’t misjudge him as a robbing thug.

I took out my phone from my pocket and punched in the numbers that were scripted on his bracelet. I then told him I’d be staying right there with him in till his mother had arrived to collect him.

Matthew seemed pleased with that idea and suddenly peace had been restored. We sat on the wall facing the car park, and as we were sat here Matthew went on to share with me his love in motoring. He was incredibly intelligent and had so obviously self taught himself well on the subject. In many ways he reminded me of my Little man.

Matthews mother was lovely. Turns out that Matthew was thought to have been in his room sleeping. She told me that Matthew had a diagnosis of HFA (high functioning autism) sadly he had never been given much support when in education and as a result his social skills were very poor. I then learnt that although Matthew Is capable of going out alone, at night he struggle as he becomes quite frighted. Regardless of this fact, he has such an interest in checking out the vehicles in the car park that he just goes on autopilot. Its only once he has indulged his interest that he realises how late it is and then starts requesting that strangers assist him home. His mother informs me that the bracelet is handy but he forgets his wearing it. It really was lucky I’d seen it as the last time this happened he had ended up spending the night be hide bars.

We walked up together. Turns out they live just off my road.

My friend looked relieved to see me alive and was just about to wake three sleeping kids to come look for me! Lucky for me she understood once I’d explained.

Let… This be a lesson to you all! You really shouldn’t judge a book by its cover.

Things are not always as they first seem… Matthew is proof of that!

Why I’m not looking forward to my toddler starting school

Who said it was meant to be easy.

They stand in little groups chatting to one another about their wonderful children. They sound as though they are almost in competition, yet desperate to impress one another.

Do I wish I was stood there with them. One of the mums who gets invited around the chief mummy’s house for a cuppa and a biscuit… No, not even for one minute!

Its strange, we see these social gatherings happening when we were at school! Yet some 15 years on its almost the same. Even stranger still is the fact that half of these social gatherings consists of the exact same people only older. They are now mothers themselves yet still raise their snobby little noses just as they did when we where teenagers.

I can’t sit here and label all mothers in this way… After all I know I’m not. And I’ve seen others who give a friendly smile and a node as they walk on by. But on the whole they keep themselves to themselves.

I have nothing against the mother who easily befriends every other child’s mother in their child’s class! However I do have something against the ones who make the business of other mothers their own and everybody else’s for that matter. Worse still they never normally seem to get the gossip quite right, resulting in some top notch bull shit or another flying around the community you live in.

I once read in the paper about two mothers kicking off at the school gates with their children present and of course everyone else’s. One mother was so badly attacked she was hospitalised while the other was taken of to the cells for some cooling off time. Another horrendous story I saw splashed all over the national news was that of a father attacking another father during their children’s Christmas production. The guy actually bit of the other guys finger and spat it out like some sick animal. I only hope they got the children out of sight because that’s the stuff of nightmares.

I’m not worried about having my finger bite of or anything (though that wouldn’t be fun) I’m just expressing my point which is “School playgrounds can be hellish places, not just for the pupils but for that of their parents too!”

So… Why am I banging on about all this now?

It’s simple… I’m already fretting about the day that will come and see my youngest child take that giant leap into education. His now almost 3 years old, and the time so far has just flown by. Before I know it I’ll be there… And again i’ll be stood in the playground with a new group of mums.

my youngest Harley almost 3

As regular readers will already know, When it comes to schools I seem to always have some kind of crappy issue. History is my proof.

I know that my eldest child being on the autism spectrum meant he didn’t fit in with his “Typical” peers and this therefore meant that I as his mother failed to fit in with their “Typical” mothers. Well, lets be honest here… I never overly tried! Friendships just happen and don’t need to be pushed (some need work but these are existing ones). If I don’t instantly click with someone then its 98% chance I never will.

I remember when we’d be stood waiting in the infant playground for the bell to ring indicating the start of the school day. Up in-till that point, little man would be running around like a rabbit with headlights. He’d bump into everything and everyone. Some may think… “And what? Isn’t this what boys do?” And to a certain extent, yes it is! However, little man had no regard for boundaries. He’d just roar into another’s conversation… Speak his mind and therefore say the most inappropriate things (normally stuff I’d actually be thinking but never likely to say aloud). He’d run and grab footballs from the ground while others tried to play a game and many peers therefore saw him as a really big pain in the butt! Me, I’d be dashing about after him like a crazed headless chicken, failing miserably at any attempt to catch him let alone control him. Mothers would stare, some shaking their heads and tutting, others turning to their friends in disgust. Whenever Little man dared attempt to approach their child they’d quickly be dragged away and warned “Don’t play with that child, you hear me?”

I hate it when parents act like my child is some sort of diseased being. They look at him like his some little demon child who could potentially convert their child into something similar. I used to let the ignorant stares upset me and remember that at one stage what others thought meant a big deal to me. But in all honesty you cannot spend each waking day like this. Yes you can advocate for your child but running after every parent who looks at you slightly funny probably means you’ll be spending most of your life running. Yes, I’d be a lot fitter but I don’t fancy it all the same.

So, there you have it! This is one of my many reasons I’m dreading the toddler starting school. I just wished he stay little forever.

Little man just about to melt down.

STOP MOCKING CHILDREN WITH AUTISM

Why does our TV channels feel its OK to screen shows featuring comedians mocking children and Adults with autism?

What really annoys me most is that this same channel screens programmes that actually help to raise awareness for autism yet they are happy to feature so called funny comedians joking at the expense of a child like mine.

I was sat up late on Thursday night/Friday morning as I couldn’t sleep. I sat on the sofa wrapped in a blanket, a cuppa by my side, watching BBC3.

“Oh Russell Howard… I like him” I thought to myself.

I like how this young comedian is able to take something and brighten it up. His funny look on life is refreshing. He never seems to overstep the mark, and importantly he is able to laugh at himself.

Then what happened? Yer, you’ve guessed it… Russell Howard joined the many other unappealing comedians out there and I suddenly found myself going off him in what seemed like an instant.

The show ‘Right Here Right Now’ is a stand up recording of Russell Howard on stage doing his thing.

The not so funny joke…

“Why is Bieber famous?? I’ll tell you why, it’s because he said the word baby more times than any man in a 3 minute period. It’s like an autistic child in a maternity ward, Baby, Baby, Baby… OOH. That’s not music that’s mental illness!”

Did I overreact by writing this? I don’t think I did. For one autism is a spectrum condition, not all children with autism repeat things! Secondly and most importantly, Autism isn’t even a mental illness it’s a Neurological condition. Miss informing a nation that’s already built upon ignorance and stigma isn’t going to help anybody is it!

I don’t think any comedian who feels its OK to mock another because they are autistic or suffer mental health difficulties is worth watching. Would he had thought twice if this involved another medical condition? My guess is yes!

But above all what upsets me more is that the BBC are happy to screen such rubbish, especially given they broadcast shows that do such a great job to highlight the positives in autism.

I’m a mother who has watched her child struggle not just with aspects of his Aspergers diagnosis but at the hands of ignorance too. Yet somehow I do manage to add some Witt to my writing, sometimes my motto is “if I don’t laugh I’ll go crazy” but this isn’t the same is it! I’ve tried to look at what Russell Howard said and see some light hearted banter in it, sadly I can’t… It was just a horrid uncaring thing to say.

I think this show was a repeat from months back as the YouTube comments Stretch back for over months! Therefore maybe this is something of old news to you? Nonetheless, the comments are still being added to YouTube, some in support of the autism community, others just to comment on how funny they found it…

“Russell Howard is my role model. I use his jokes and my friends don’t stop laughing. If I saw Russell Howard in real life… id thank him for his work.” MrTheRUNESCAPER 8 months ago 3 Comment taken from Youtube

The above comment worries me, as does many others. No wonder its often a struggle to get our children through school without finding themselves the victims of bullies.

Please BBC, be more careful with the message your sending and Russell… You’re just not funny!

School Gate Ignorance

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 24 – An Angel By My Side

The 24th challenge in the “Health Activist Writers Month Challenge” (HAWMC?) was to create a health mascot for our health focus! I found this a bit of a strange one, but hey this is a challenge so who am I to argue?

I guess I’m therefore going to have to come up with something and considering that this blogs main focus is about parenting a child on the autism spectrum, this is what my health mascot must represent! Nonetheless, as I write this I have no clear indication where this is heading or what my health mascot even looks like (despite thinking about it the entire day)!

Long Pause…. Seriously it’s been 30 minutes or more and I’m only just about ready to write the next paragraph. 

OK, so after lots of pondering I’ve decided to go with something quite mystical and beautiful that for many represents a number of different things… An Angel! Now I almost decided upon the Archangel Michael, an advocate, defender & protector. He is said to have fought many battles and I guess that’s something us parents of autistic children do too. However, I am not an overly religious person and Michael has been portrayed  in an array of different ways within an array of religions.

Guido Reni's archangel Michael (in the Capuchin church of Santa Maria della Concezione, Rome) tramples Satan (Photo credit: Wikipedia)

This for me isn’t about a religious figure but one of strength and power, a mascot for my health focus would need this and more besides.

I’ve always had a bit of a thing for Angels and this often comes out in my artwork, so regardless of my decision not to go with Michael, my mascot would still be an angel, only one I have created from the inner depths of my overactive imagination!

Many people feel that Angels are something of messengers, which is exactly what my Angel would need to be. As a mascot for autism and aspergers my angel would do the work needed to raise awareness and combat the crawl ignorance that surrounds these conditions by delivering the message of awareness. 

My angel would shine a light on those that failed to understand, wrapping them in his wings he would open their minds to a greater understanding. 

My angel would bring justice and fairness, ending the discriminating ways of those we have been made to put our trust in. My angel would promote equal opportunities for all, regardless of disability.

My angel would see that our children received the education they are entitled to, that they were pushed to their limits in-order to achieve their dreams.

My angel would not change those with the condition, he’d change those without. My angel would open their eyes and therefore open their minds to the world we currently live in.

My angels spirit would seek to protect the most valuable children whatever their diagnosis and protect them he’d do well! 

Artwork created by me

Post 24/30 in the wego health #HAWMC

#HAWMC DAY 21 – A Poem

Public Meltdown

They look and they stare as if they just don’t care

Laugh and snigger it’s too much to bear 

He screams and he shouts as he punches the air 

I feel like running when I see it coming

Where’s the support, why are they laughing… never seen a grown boy barking 

Disconnected from others, fall of anger and fear he runs it’s no fun to chase him about as his mum

Senses heighten, emotions they do flow 

Tears and panic it’s so hard as his grown

 Meltdowns so hard for all those involved

ignorance much harder

if only they did know!

The 21st prompt in the “Health Activist Writer Months Challenge” (#HAWMC) set by wego blog was to write a Health Madib Poem. You visit the site feed it a loads of words and it generates a poem but I found it useless, nothing made sense and to alter it there seemed Little point as it would be easier just to write my own, so that’s what I did. 🙂

Post 21/30 in the wego health #HAWMC 

Related articles

• Patiently I Have Never Run: A Mad Lib Style Poem about Lupus (#HAWMC 21) (butterflylessons.com)
• #HAWMC Enjoy the Moment (mylymechronicle.com)
• #HAWMC: Warning! We Are All Suffering from A Condition Known As Pre-Death (enbloommedia.com)
• #HAWMC: Keep Calm and Do What? (enbloommedia.com)
• #HAWMC Day 5: Ekphrasis Post: Peace and Beauty (livinglifewithraandfms.wordpress.com)

#HAWMC Day 20 – A cure for ignorance

The 20th #HAWMC prompt was to come up with a cure for your health focus. The only thing was, I didn’t need a cure for my health focus! Yes, there is plenty of things I wish that I could make that bit easier for my son who has Aspergers Syndrome but I wouldn’t go as far as stating he needs to be cured!

With the above in mind I wondered what I’d write about instead, then it came to me… How about a cure for other peoples ignorance?

The majority of our society remains misunderstood when it comes to the autism spectrum. I hate listening to the remarks of others when speaking about something they lack a great degree of knowledge in. OK, ignorance isn’t always the fault of an individual, some just haven’t been exposed to autism, therefore not having any reason to discover and learn about it! Others are simply misinformed via the media or other sources.

Then we encounter them cases of wilful delusion, people who understand more than they care to admit but simply ignore it. Those that refuse to change a certain view or way of behaving regardless of how well educated they are on the subject. It’s my opinion that this kind of ignorance is often found within schools, you’ll find teachers that agree with the difficulties you state your child is experiencing yet fall to note the concerns or apply for extra funding so state there is no problems within school. From personal experience and through discussions with other parents of children on the spectrum, It would seem that many school who have a child on school action plus have failed to fully use its resources despite having received the funding so when it comes to you asking for a statement a school will sometimes discourage a parent from doing so advising them to leave it a few months and stating that there are one or two things they can offer in the meantime.

This is why many autism activist campaign for it to be made a requirement that all schools train and educate its staff in all of SEN and that of the autism spectrum.

You see, some people will claim ignorance to be immoral but how can one understand something if they haven’t been educated on? The fact that one person feels they have the right to judge another with little evidence to base their conclusion upon is that of ignorance in itself… after all evidence can only be formed if those collecting it look for it and therefore learn more about it!

I’m guessing almost if not all parents of a child with autism or aspergers syndrome have been on the receiving end of ignorance at some stage of their child’s life. The parent of the child who really struggles with everyday experiences such as shopping will know all to well what its like to be stared at and judged just by looking at their fellow shoppers! Yes, it get does get easier with time, sometimes I fail to even notice those stood around staring, the whispers or continuous head shaking motion and tutting sounds many make and though you know its there, some days you’re just to tired to care!

Nonetheless, Regardless of how accustomed to it one may become this is somewhat besides the point! People need educating but sadly you will always find not every ones willing to step forward and learn! Of course we can’t make people think before they judge, only they can do that. Plus we all do it in some form or another whether it’s in relation to autism, mental health or something else altogether. However, it will eventually still grind you down, OK, not everyday, but those that do are enough to drive you into a state of depression, insanity or both!

Parents of children who have only just received a diagnosis or even those of undiagnosed children can find ignorance much more difficult to contend with (I know I did back in the earlier days). What’s more ignorance can also be an extremely upsetting experience for the child on the spectrum, especially those considered more high functioning. Again I feel many assume that because it’s documented that children on the autism spectrum are in their own little world they therefore often disregard the child’s feelings simply thinking they lack the intelligence needed to understand.

Well its a fact, no one wants to be judged, especially when it relates to the way they bring up their children. The child with autism is often labelled a menace to society, the child heading for an ASBO by its 5th birthday… no one wants their child to be thought of in such a way! It’s this part that most parents find the toughest overall.

Of course we as parents can’t spend forever worrying what others do or do not think of us and I for one don’t seek the approval of society on how I parent. I don’t need to be told whether I’m doing an efficient job or not, I don’t seek any ones approval apart from that of my own. It’s took me a long time to be able to actually feel this way, yet there will still be those days I slip and break at a strangers glare or ignorant comment whether it’s in a week, a month or even a year.

So here’s my final thoughts to wrap this post up! Ignorance is actually a state of unawareness which can in fact be cured with a little bit of educating! Those that receive that education but chose to ignore it don’t only become intentionally ignorant but are also filled with a degree of stupidity. Bottom line… We don’t need to find a cure for ignorance because there is already one available in that of education! What we do need is a cure for stupidity to finally fix the problem!

Image credit to the fabulous Chato B Stewart who blogs at PsychCentral.com an activist for mental health who uses a bit of healthy humour within his work

Post 20/30 in  the Wego Health #HAWMC 

Related articles

• #HAWMC Day 1: Health Time Capsule (livinglifewithraandfms.wordpress.com)
• Hype is Not News (healingminds.wordpress.com)
• Starbursts Candy Cures Lupus! . . .I Wish (#HAWMC 20) (butterflylessons.com)
• Does Clutter Make My Butt Look Fat? Lupus, Exercise, and Clutter (#HAWMC 18) (butterflylessons.com)

#HAWMC Day 9 – Stay calm get the hell out of here

He screams abuse in its strongest nature, he hauls it towards you thick and fast. You feel your cheeks burn as they light up an awesome shade of red. You try to reason with him, though he doesn’t listen, just calls you some awful name. Can you believe a child can make you feel such shame and in the most public of places. 

They stare, they stare that almighty stare, it’s as if their eyes are burning a hole right through your soul. 

Rushing along the aisles you hear their sniggers greet you, do they even care, surely their aware you can hear. 

“Please stop” you hiss as you try to gather the shopping from the floor. Your child stares at you blankly before declaring how unfair you are and running in the opposite direction. You set chase, knocking over the contents of the shop as you embark on the mission to catch you’re fleeing child.

Suddenly you stop, fall to the floor, throwing your head back screaming “God, why F***ing me… Why…?” you forget about those stood around you, mouths open wide, heads viciously shaking some may laugh too.

Hands removed from face, your greeted by the store manager who asks “IS EVERYTHING ALRIGHT MADAM” You feel like screaming “Does everything look OK?” Instead you give her a half-smile, Nodding like the Churchill Dog as you scrape your sorry arse from the floor and set about looking for your child, only to discover him right there next to you. 

“Sorry mum, can we go home now”

You feel yourself nodding once more. As you walk towards the door leaving you’re shopping behind you tell yourself…

“KEEP Calm AND GET THE HELL OUT OF HERE!”

Post 9/30 in the #HAWMC set by wego health 

 

Related articles

• #HAWMC Day 5 – Drifting in dangerous waters (aspergersinfo.wordpress.com)
• #HAWMC: A frank discussion (mypostpartumvoice.com)
• If was a Marvel superhero, I would be Madame Butterfly Lessons (HAWMC #7) (butterflylessons.com)
• #HAWMC Day 1: Health Time Capsule (livinglifewithraandfms.wordpress.com)

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)

Look here comes the naughty kid

Image via Wikipedia

You look at me, your eyes pressed firmly upon me, you do not look away, instead you stare that deadly stare, the one I hate but have to bare!

Are you sniggering? Seriously… Why? Isn’t it time you moved on by?

Shaking your head, Oh, that would be right! Don’t you think I’ve had enough of that tonight?

OK, you’re laughing now… is my child’s discomfort, confusion or happiness, funny somehow?

Leaving? You have an appointment to gossip down by the school, I guess you’ve never seen a child quite as rude as mine before!

Of course I understand, his party invite didn’t arrive, lost in the post you say, yer, that would be right!

He wonders why the children have gone inside, Little man now has his pick of the rides, but sadly the see-saw, he’ll not be able to try.

It’s OK, please there’s no need to explain, I understand, your child is not able to play at our house today, his bedrooms a mess, so his chores he must abide… another time maybe, how about when his 45?

Seriously ladies, he doesn’t bite, his actually house trained, though have a meltdown he might!

Shit… that’s a camera… you’re taking pictures… you twat! A zoo animal he is not! take my advice, go run and hide, because right now, I might shove that camera right up your behind!

God, yes I’m stress! Please don’t suggest…. what I might… Did you have sleep last night?

It’s an excuse, his naughty for sure, look at his mother, I say no more!

Off to the doctors… is Johnny all right? Catch it! I ensure you, that’s not right!

We live in a society where ignorance is breathed like air, one or too may sweetly smile, while others just stand & stare, never in their lives have they seen such behaviour before!

Now, You may have experienced the deadly stare from the eye of a passer-by, as your toddler demonstrates his new skill of throwing himself on the floor! Yes, I’ve seen it, daily in fact, I’ve heard the gasps of horror as my child sets about attacking the neatly stacked tins while on a supermarket binge. I’ve witnessed the shaking heads, the tuts, the suggestions from those who misunderstood the situation! I’ve explained, I’ve cried, I’ve stuck my finger up and smiled, I’ve dealt with it swell, I’ve dealt with it not well!

My child is a boy, an 11-year-old boy… who wants to be liked, his actually quite nice!

I’ve witnessed how a busy park suddenly empties on a hot summers day, the parent that grabs her child and runs away! I’ve lost friends, they faded, disappeared simply ignoring me, hoping I’ll go away

Ignorance is crawl, inflicted by those, young and old, those that don’t know you or worse, those that love you!

It happens… it will always happen! It’s called parenting a child with Aspergers Syndrome, more appropriately… Hidden Disability Syndrome! He looks no different, his ticks and traits, hidden within a mass of boyish ways, but make no mistake when they surface you’ll judge him, you’ll judge me, you’ll judge our life, our family, our values, opinions and sadly you wont stick around and realise your own silly mistake!

This April is Autism Awareness month, with the 1st of April being “World Autism Day” I ask, that on this one day… you see the bigger picture, you take this one day to Google the words Autism and Aspergers, you read with an open mind and an open heart, I ask that you leave the ignorance behind you!