IT’S ALL ABOUT AUTISM & ASPERGER’S

How many people in this world can tell us what the word Asperger’s means ? It’s shocking that despite the high percentage  of people now diagnosed as having ASD, It’s still not known or it’s just greatly misunderstood!

ASD stands for Autism Spectrum Disorder. Asperger’s is a high functioning form of Autism that is on that very spectrum. Being a mother of three beautiful fantastic children one in which has been diagnosed as having Aspergers is an amazing experience for me. I love being a mum and feel it to be my life’s purpose! This blog has been created as place I can express myself, Get heard, raise awareness, stress rant and rave ( some of the time ) But most importantly a place for me to share this amazing boy who has this gift, The boy I’m so proud to call my son! Having a child with Asperger’s or ASD doesn’t mean the end of the world! Far from it! God it can be hard and at times you feel like screaming but it’s also incredibly rewarding. ASD is not an illness but a condition. If you look for a cure I’m sorry but I don’t believe you will find one. My advise to you would be embrace and love your child. Aspergers can be seen as a gift! There will be many battles to fight and problems to resolve but there will also be many times that your Aspie child makes you catch your breath as your heart melts with pride. That I promise you.

By writing this I’m reaching out to other parents and careers of Autistic children. Lets share and advise one another. Let’s keep talking! By doing so we create awareness. If we are not the voices of our children who else will be ?

IF YOU HAVE JUST TAKEN THE BIG STEP INTO MY WORD AND JUST DISCOVERED YOUR CHILD IS ON THE AUTISTIC SPECTRUM. THEN IT’S MY HOPE YOU GAIN SOME UNDERSTANDING AND COMFORT BY READING MY STORY.

This post was updated on the 8th April 2010. This update included a name change and new image.
Glitter Graphics

The end of a troubled school year.

Well, here I am sat at my Mac at what some would consider to be a crazy hour. Yes, Ok it is 05:45am and I guess once upon a time I would have been laughing my arse off at anyone who was sat blogging at this time. Well, how times have changed. Most bloggers will understand what I mean when I say when you feel that need to blog you get up and blog no matter what the time. Yep I was laid in my bed with at least three weeks worth of blogging material filling my head to the point I could no longer take the built up pressure and just needed to get on here and free my mind in preparation for the next massive instalment of muddled information in relation to our wonderfully crazy life of Aspergers, buses,  school battles, laughter and lashings of love.

So here’s what’s been giving me the banging headache. Beware I’m warning you I’m about to off load an overload of information! So grab a coffee or two and enjoy.

School! Well, I’m not sad its over! For six weeks that is. Most parents will already be giving it all the ‘Oh I can’t wait for these kids to go back to school’ after a few days of them running around under their heels. Not Me! I’m happy to have my two monsters home. I’m not suggesting it’s going to be an easy summer however I am suggesting that it can’t possibly be any harder than these past six months. Regular readers will understand where I’m coming form when I say it’s been an exhausting, draining, intensely frustrating  journey. Basically life had become a sack of shit ( Excuse my use of rotten language) But this is the only place along with my facebook page I can truly express such stuff! Unless I go scream and curse in a field with some cows. We don’t want people thinking I use these insulting words around little dude! Let’s be honest here… Yes it hurts when those around you look at your child cursing and wringing then look up at you as to say.. ‘WHAT ARE YOU GOING TO DO ABOUT THIS BEHAVIOUR?’ You do nothing, avoid throwing petrol on the fire so to speak only to be judged for it. But come lets face it I would have been judged either way and the reason I know this is because I’ve been there a thousand times before and all though it hurts its like a fall you get over it. I will apologise for certain behaviours! It’s not all Autism you know. Little man is a nine-year old boy and like many he has moments. Nevertheless I will not apologise for my child’s autism.  Yes, I swear I’m human and at the end of the day I have three children one Ok can just about say Dada but I do have a daughter. I can honestly say I have never heard her swear in her almost 8 years of living. Little man! Well, his the curse monster and he swears so much it half seems normal (Not good I know) Sorry I’m merely making a point and by doing so I’m losing track of what I’m supposed to be writing which was to state my point that is..I’m so pleased to see the back of my children’s school for the summer.

Please don’t get me wrong, I’m not being nasty nor is it my intention to knock the school in fact at a guess I would say they would say the exact same thing about me and me little guy. I’m sure they don’t want me down there all guns blazing a good proportion of the week like I don’t enjoy the phone calls, exclusions and bubbling volcano that happens to be my son on a bad day. I think its fair to say it’s a win, win situation.

Things aren’t all that bad as we had a pretty relaxed (well I kept my sanity) last few weeks at home and school. Many would consider this to be a joke but lets not forget his recent behaviour and the problems that we have had with him and school. Not having any exclusions the past few weeks has to be an achievement in itself. I was talking to his class teacher the other day and it seems that since my decision to remove him from school during lunch hour and taking him home to eat with us there has been a sufficient change in lunch time behaviours. It’s quite easy to work out how this has been achieved! He hasn’t been there to have the problems it’s that simple. His teacher agrees that it’s a marked improvement. Little man is unable to cope with the truly over stimulating environment the playground has to offer. This often leads to him darting back and forth up the corridors, halls and classrooms. His anxiety levels score and all though he can’t handle this unstructured time he fears missing his lunchtime and having it replaced with him sat in the office. This only seems to fuel his anxiety and anger as it all becomes very under stimulating. That’s the thing with my son! There is no in between His what some would describe as unpredictable due to his ever fast changing mannerisms. As his parent I know I’ve made the right choice as things are better for little man now his indoors and his eating. It can’t be healthy for a young boy not eating breakfast and then not touching his lunch. He must have been staved by mid afternoon. I find it hard to see where he got the energy for his running and fighting? Lets not forget the little sleep he has. No food nor sleep yet running around like a cheater on pro-plus. At least now he doesn’t come in and eat everything in reach. This for me is a great thing and is one more target ticked off our list:)

SCHOOL TRIP

Here’s another constant problem I’m worried about. Will Little man be able to attend the school trip like all his peers? He had a recent trip to finish of the school year. I feared the worse what with the Allotment business but it was agreed if I attended he could defiantly go. ( I was told he would still attend without me as his TA was going but it was feared he would not last much of the day) Lucky for him I managed it and got a sitter for my youngest. The trip was to attend a local park, have a picnic, chill out and play some sport or spend time in the swing park with its funky water squirters that the kids went crazy for. I have to say I really enjoyed the day. Spending some time with little man was nice and it was also useful to see him practising social skill no matter how hard it was for me to watch. I finally met the other child in his class diagnosed as having ASD. This is the child that some have said little man bullies. I can understand in a way why he maybe perceived as doing so, but given more time was spent with both the children a greater understanding would be achieved. It’s extremely clear to me that little man has a huge amount of resentment towards this other child. He only has to talk and little man pulls this face and moans ‘GO AWAY, PLEASE GO AWAY AND SHUT UP’ This little chap seems to have had a journey all of his own and his wise beyond his nine years in many respects. I love the way he told me I do certain things because I’m autistic! This boy said them words with pride and to me (I maybe wrong) He seemed happy with himself. He was Autistic and proud. Little man however has told me before about this child in his class who often quotes his autistic proudness out loud. He said its stupid and he shouldn’t want them knowing. He is so assumed lately and he tries so hard to suppress his true self around others meaning gigantic overload release once behind closed doors. I think he wishes to be as confident as his peer with autism. He sees the child he was before in terms of aloofness. I mean this little lad was great but he didn’t really care if he was left out. He often came and chatted to me about his trading cards and it was upsetting to see the friend he had made was in fact not a friend at all more a child who saw an opportunity to take a child on the spectrums kindness and trusting way for grunted. This was the child who I considered to be a bully. No, there was no name calling, hitting or public humiliating maybe that’s why it wasn’t seen. It was a one-sided friendship the bully just stole and blackmailed the little boy into handing over the things he wanted. Don’t get me wrong his just a child doing what many children do. He could be bullied himself or maybe he don’t see this as bullying. He hears the child say he has autism but does he truly understand it’s meaning? I very much doubt it which just shows that the bully is just another victim of an ignorant society. He just sees a way to get what he wants and that’s that. Then there’s my boy the one with Aspergers. Blunt, upfront and loud. It’s true! But these are clearly a result of his Aspergers. What child is so blunt when shouting out things at another child. Most bullies would not do this in view of the teacher and no matter what was done in terms of punishment the child isn’t very likely to continue this behaviour in his teacher presence. It’s easy to see that little man is upset by this child. I got them talking and when alone Little man was able to hold a conversation with him well that was in till the boy told him everyone’s different and he should kick or punch a wall when angry. I guess its kind of like your elder always thinking they know best. They are so alike and little man hates this (and the fact the boys “special interest” is pigeons does not help this already complex situation) Little man coped quite well with the trip and although he struggled to follow teachers instructions he did give it a good go. I think me being there is somewhat confessing for him as he can’t connect the two. School and home are two different things to him no matter how hard I’ve tried it’s just to hard to change his rigid way of thinking. So of course the way he saw it was why do we have to wait for the class before heading off somewhere? Why can’t we go home when his had enough? The worse being there was a red roundabout and he often plays buses on it when we are at the park as a family. He doesn’t want anyone knowing about his love of buses but was finding it a torment as he was desperate to play his bus game. What he did was rather clever as he got the children to sit on the seats casually shouted £2 each please in a joking manner. (£2 is the price of a bus ride.) Then he just spun them around and around I could see the concentration on his face and I knew what he was doing! What he was saying in his head. Of course things can’t always be this simple and he ran into a few problems along the way. Children sitting on the bar instead of the seat or children trying to push the roundabout along side him. He was hitting out, chasing kids and at one point burst into tears. I found this so hard to watch and felt like screaming ‘Be your bloody self, play what ever you want it’s better than being sad.’  Other things also contributed in making the day more difficult. He didn’t really have a great schedule so a good section of the day was spent asking when, where and what time is it which was tough for me:( But we did it. We managed inclusion for a good five hours and though little man wasn’t in control we did it and came out the other side knackered but smiling:) As for the other little guy with Autism I would love to meet his mother who has done a great job in helping her son manage his aggressive behaviours and learn to love accept and understand his autism. I hope someday my little man stands that proud.

ITS PARTY TIME!

I’m sorry if you’re yawning people I just have so much I want to say so gonna make this as quick as possible. My Little man has had a rather eventful few weeks in terms of fun. He was invited to his first birthday party. When I say first I mean someone other than family. Like lots of children on the spectrum Little man rarely gets an invite from school and although it hasn’t seemed to bother him he was elated to finally receive one. As far as I was concerned the child who had invited him was a friend from school but it turns out that he doesn’t attend the school anymore as he has been placed in a specialist school better suited to his needs so the invite was passed on by his brother. Little man went to the party and I sat worrying myself senseless about how he was coping and how he was behaving. I have to be honest I couldn’t wait for it to be over. At five I headed off to collect him with my fingers firmly crossed that I wasn’t about to walk into a war zone with a bunch of unhappy parents and a dozen screaming kids. With bated breath I knocked on the door and thank goodness I was greeted by a smiling parent who told me he was fantastic. He did start pacing the house as I was five minutes late collecting him but apart from this all went well. All that time I spent worrying could have been used doing something constructive but at least now I could relax. On the way back home little man told me all about his friend and how when he had left school he didn’t know what to do and wanted him to come back. I spoke to his teacher about this and it seems that his friend left before little man’s behaviour problems in school had spiralled  out of control. Wished I had known this as my little guy was hurting. At the time he didn’t have many friends and I can’t imagine how this felt for him no wonder it affected him in such a un positive way if he wasn’t able to express such upset. I remember being told nothing had changed at school and it was always assumed that it must be the massive change at home affecting his behaviour at school (I had a baby and this is what was considered the trigger) I couldn’t understand how as his relationship with his baby brother was better than I had ever hoped for it to be. He was the dotting big brother who said ‘MUM HE IS THE MOST BEAUTIFUL PERSON IN THIS WORLD.’ Yes, he said this when he first met his new baby brother on the day he was born. He was sat holding him in the hospitals delivery room at the time. Of course I was one proud momma and that was one of them moments you cherish. Nevertheless it was a huge change so I have never wrote this off. Now I think it was because too many changes were happening for my little man these changes were both good and bad but all at the same time. A massive brain shake for any child.

Staying on the subject of parties this wasn’t the only party little man attend! As it was the end of the school year like every year his school puts on a disco for all the pupils and parents are asked to attend. Myself, Little man and his sister had a great time. It was held in the schools playground in the early evening. The weather was beautiful and I really got comfort from seeing them both so happy. Little man bowled around with his little partner in crime and my daughter happily danced with her friends. It really was a blissful evening and went exceptionally well. I will be honest in saying I dreaded the whole thing all week! Hundreds of kids, Mothers I rarely spoke to and a great amount of tension between myself and certain members of stuff because the way things had been left after our recent meeting. However I needn’t of got so upset as it was fine and I felt more relaxed the longer I stayed. Little man coped with the whole disco thing really well. I thing having the disco in the playground was a marvellous idea. As the disco was in the evening the temperature was cooler than the midday sun ( Hot weather often drives little man bonkers) And the music was loud but didn’t have much to bounce off where in the hall it would have and it could have ended up being too much for him and I’m guessing he may not have been able to stand it. We stayed till the end and it felt good to be leaving at the same time as others instead of having to cart little man of home because something had happened or he wasn’t coping. At the gates I meet his friend’s father who invited little man to their home a few days later and it was arranged he would collect him along side his friend at home time. Little man was super excited and spent the next few days switching between Alex (His friend) and buses (His “special interest”) It was great knowing he was feeling so good and at least he was experiencing the things childhood and friendships should bring. He went and he had a brilliant time. He was reported to have behaved and has since been back and even stayed the night (yes me sat at home worried sick that he would get up and just wonder home in the middle of the night was a nightmare) again he proved me wrong and though yes he didn’t sleep as I expected! He managed to stayed put and instead kept his friend awake the majority of the night *giggle*

Lastly I just wanted to share my exciting news. I passed my telephone interview and I start my training to become an autism education advocate with the National Autistic Society hopefully by the end of the week I’m just waiting on the paperwork to be sent in order to get stated. Training will be home based but with two practical training sessions that require me to spend two weekends away in November (Destination unknown at present) I’m so looking forward to it and really hope it opens doors for me. My son having Aspergers has made me passionate about autism. I would love to be able to make a difference to those on the spectrum and those affected by it. The telephone interview was a conference call so this meant I had questions from more than one interviewer. I was nervous but felt more at ease the longer we spoke. I did finish thinking that’s it I’ve bloody gone and blown it. I’ve never been over confidant when it comes to interviews and test and though it didn’t go to badly I did feel I could have done that bit better. When I was told that someone would email me to inform me if my application had been successful I was shocked to discover a mere fifteen minutes later that the email was there sat in my inbox and yes it was successful. Well, It goes without saying how pleased I was and I showed this by giving family a view of my victory dance. I want this so much and will give the training my everything. By doing so I hope to help and advise other parents and careers who like me didn’t have a Dickie when it came to their child’s rights within the educational system and sen framework.

I just want to be “NORMAL” mum.

It breaks my heart when I see my son so broken. I feel that so much has happened so fast his cognitive and emotional state has suffered. His confidence is also hitting an all time low. Little man needs lots of assurance I look at him and see a ticking time bomb. At home he can seem just fine then something happens to knock him down and the bomb starts ticking again. No child should have to feel like they are not “Normal” nor should they have to try figure out what it is about them that contributes to them being excluded from everyday life. Does every Child still matter? Is inclusion just being pushed aside? Just because you can’t see autistic spectrum disorders don’t mean they are not there! Every time a child gets left behind so does a bit of their ever flaking confidence. I myself would find the guilt intolerable if I contributed this. The more acceptance and understanding from society the less a parent gets told by their child ‘I JUST WANT TO BE NORMAL MUM.’

What I want and need to say to my child

Little man…..

..From the moment I discovered you where there I knew you would be special with many gifts and talents to share. I couldn’t wait to hold you in my arms and meet the little boy I had created. I would spend hours a day thinking about you, what you looked like and the person you would become. You were about to make me a grown up. Yes, I was young at just 18 but I was determined to be the best possible mother to you in every way. I had already done so much so young and had not long returned from working and living in Greece. I had a fantastic time and if it wasn’t for your dad I may off just gone back. Just knowing something this amazing was taking place right inside of my tummy was a breath of fresh air. Your great nanny Peg had just left for heaven and I could not see a way through something so painful you gave me the strength to carry on. Its like Nan had left leaving a new beginning in place of the one we had just lost. You were already more than just an unborn child. I loved you from the moment I discovered I was carrying you. Already you had changed something inside me I felt stronger than ever, you made it Ok to smile again. I felt extremely lucky and still do.

Four days overdue on the 1st October 2000 you proved you liked things done differently when you decided that it was time to let the plug out the bath so to speak . Yes, as I waddled like an over weight penguin around the supermarket it really wasn’t exactly the best of timing. Little man your dad ran away with embarrassment as he was convinced mummy had peed in her pants. Needless to say I was more than grateful to be out of there and safely in the comfort of the delivery room. 6.05 pm without a sound you were born. YOU SOMEHOW DECIDED LABOUR WOULD BE A GREAT TIME TO CHILL OUT IN THERE!! SO WE REQUIRED A LITTLE HELP. I was stunned at just how relaxed you were. With lots of red hair weight of 7 lb. 1 oz and a who the hell are you? Expression on your face you were handed to me and I held you for the very first time. You looked at me as if you knew all about me I remember thinking wow I’m now responsible for this little person! That and Wow where did you get all that red hair from? It was then I promised you I would always keep you safe and never let anything happen to you.

It’s rather comical! As I write this you laid stretched out on my bed. Your legs are so long your feet almost reach the end of the bed. It’s been another long night and when you eventually fell asleep on my bed at 3 am why sitting up discussing 194 bus doors I thought it was probably best leaving you there. Thing is you’re not that little 7 lb. baby anymore your almost ten years old. At first glance most would say you’re an average ten-year old but get to know you things will undoubtedly change. Average you certainly are not. You are so much more than that. YOU’RE MY INCREDIBLY CLEVER, TALENTED TEN YEAR OLD WHO CAN TELL YOU THE ROUTE OF ANY LONDON BUS. I’m so proud of you and I say all the above because its true and I hope that despite everything and everyone you know that! Now and always. Little man be proud of who you are the people who care will like you regardless of how you speak, what you wear, or how intelligent you are. Don’t fall behind in school to fit in, dumbing yourself down is heartrending. Express your interest without fear and those that are not understanding can just disappear. Show what your good at poems & numbers. If something hurts or isn’t right don’t run away its Ok to ask for help. Be proud of yourself because you are special. Don’t ever feel ashamed, those that don’t like it can ultimately lump it.

At the same time try to be considerate to others feelings counting to ten before saying something that maybe true but hurtful too. If your anxious walk away and find somewhere quite but safe. Please don’t hit others or yourself If you’re feeling like you’re not coping or you feel upset please tell me somehow something is wrong.

When you came home from school and said you wanted to be normal I didn’t know what to say. I know I should have responded straight away and I’m sorry I didn’t. This was only because I was upset that things were getting so bad for you I hope that I explained it to you in a way that made sense for you. It was as if I somehow felt I had failed you by not protecting you like I promised. But the truth is I can never protect you from life. Sadly life is often difficult but then when its good it’s fantastic. As for wanting to be Normal nobody is “Normal” Who came up with the term and who are they to suggest what is and isn’t “Normal” we are all individuals with a certain degree of uniqueness. If we were all the same life would be boring. The only difference for your uniqueness is yours has a name and like I’ve said before that name isn’t silly nor is it a name that defines you. Aspergers don’t make you who you are you make Aspergers what it is.

WHAT IS IT?………..

………..IT’S JUST A BOY LIKE EVERY OTHER BOY BUT WITH A LITTLE EXTRA MAGIC.

Its ignorance that’s shameful not you, not Asperger’s! I won’t lie the probability that in life you will sometimes feel you are excluded from society is almost a certainty. But never think this is because you are not “Normal” never sit and ask yourself why! It’s societies lost. One day they will wish that they had taken the opportunity to embrace and learn about The boy with Aspergers but by then it’s to late because his now the man with Aspergers who never looked back.

I love you so much little man and through I know you find things stressful and can get angry or aggressive I know a lot of the time your anxiety levels are just to high. I’m so proud of you for giving it your all and trying to reduce certain behaviours at home. Your aggressive behaviour towards your sister is improving and that’s all down to you. I hope that in time things improve at school and everyone gets to see you for the bright star you are.

The child behind the mask.

It’s been a while since I last posted anything and if the truth be told I’ve just been so tired and not in the mood to blog. It’s rather annoying when your head is willing and happy to blog but your fingers and rolling eyes can’t keep up the pace. Nevertheless here I am with a head full of stuff that I need to write. I think its wise to start this blog by letting you all know I’m still alive and then jumping onto what’s been happening in terms of little man and his floundering education.

Since last time I posted thinks have progressed in some ways but have become progressively worse in many others. It’s so soul-destroying knowing your little boy is not being seen for the true bright child that he is. I’m not blaming the staff for this I’m blaming the educational settings in which I chose to place my son within only to find it the battle of my life to remove him from them.Yes, I can pull my child out tomorrow but any parent going through what we are will understand that without a statement I will be forced to place Little man in yet another mainstream school which in itself will only cause him heighten anxiety. Yes, maybe another mainstream school better suited to his needs, more understanding and willing for the challenge is out there! But how many schools will we have to send him to in order to discover it? Well, I’m hoping that at last something positive will happen and somehow the right steps taken. The reason for this small hope that I cling to is one my Solicitor has put in my appeal for a statutory assessment and two because the school have decided to put in the Assess one form with a number of professionals evidence to prove his current place of school is not the right place for him after all. To many this sounds extremely positive and yes it does to me too but I’ve learnt that with the educational system nothing is set in stone and sometimes the outcome isn’t what you expected nor wanted it to be.

The meeting that was held at little mans school on the fifth of this month was not only the largest we have had yet (In terms of the number of staff and professionals that attended.) But it’s also the one that’s had the most positive outcome. What I didn’t expect from this meeting was for it to be an incredibly emotional one. I was only in the room a few minutes before I could feel myself getting upset. I’m unsure why I hate showing my emotions when in the kind of situation I was in, I just do. I already knew that certain people were attending and I found myself nervous for the best part of the weekend. Every meeting I’m the same but this time it was more than that. I think it was because I had a certain subject to raise and wished I didn’t have to because the communication with the school had improved a little and also the fact I would hear everyone’s opinion on my child. Little man has a range of difficulties and I’m aware that many of these will cause a problem in the setting he is placed in. I am his Mother who has stressed my concerns for such a long time without them being heard. Yes, once I finally got little man the referral to CAMHS they were great. The first clinical psychologist little man worked with was the one who first made Aspergers known to me he was the one who handed me tissues to wipe my tears and gave me a ton of reading material to get stuck into. But what I’m most grateful to him for is being that first person to listen and tell me CLAIRE IT’S NOT YOUR FAULT! These are the words that I still tightly hold onto through everything that has come our way! The battle to convince school that something was wrong, the many assessments, the oh so familiar looks from strangers, the diagnosis, two court cases for attendance and like many this very meeting. Sadly this psychologist left for a job in the sunnier parts of the world but we met other understanding professionals along the way and we were very lucky to meet a great specialist teacher who would also attend this very meeting. Others that stand out from the crowd is his morning teaching assistant a person that has better skills than most and In my opinion could do with a raise. She really should train and find herself a placement working with children like Little man as her support and dedication to my son is a rare gem to unearth and when Little man has finally left his current mainstream school she will be sadly missed by him. It was the statement written and read by this teaching assistant that was very overwhelming. To hear someone other than yourself speaking about your child and at the same time expressing concerns that have been your own concerns for many years can bring about a roller coaster of different emotions. I felt sad, worried, helpless, and surprisingly a little relieved. I went through one extreme to another and found that for once I didn’t have to convince any one person in that room that my son did in fact have a range of problems that were down to a diagnosis of Aspergers. His teaching assistant stated that Little man is for ever anxious and for this reason he is very unpredictable. Little man often lashes out and children are scared of him but have in time learnt ways to ignore and deal with certain behaviours. Wow can you blame me for becoming upset. My son was seen as some kind of aggressive monster by other children. All I could see was this little boy who himself is faced by fear as his scared of the world he lives in. I also heard from an outreach worker who works with little man once a week. She was the one who opened the meeting by stating that although she could see a gentle polite child she also saw an anxious one who is unpredictable and once she loses his attention it’s near on impossible to get it back. She finished by saying working with Little man was like walking on eggshells. This is a statement that I myself have used to describe the behaviours displayed by Little man.

A number of other people spoke and in turn I see a clear picture emerging of a child who was constantly trying to be someone he wasn’t. Hiding his interest in fear of them being seen as stupid by his peers. He was wearing this mask and with it he became a ticking time bomb. My little man had become a child that others feared, others liked, and others were unsure how to approach. All this because he just wants to fit in he just wants to be liked and seen as what he calls “NORMAL” The front door to our home closes and outcomes this child who just wants to relax and be himself. He grabs his pencil or my glasses and then will corporate these unusual household objects into the game that he will often play for hours. My son has transformed himself into a real moving, talking and beeping London bus. Whatever you do don’t try to ask him how his day went nor what he wants to eat for dinner unless you want abuse, tears or an overload of emotion displayed in an undesirable way. Now is his time to offload the stress of his day. This is his coping mechanism as well as his favourite thing to do. This is when little man removes the mask that he has created for himself! This is when his HAPPY.

The meeting went well and although the topic of school trips was brushed aside by the Head till after the meeting, I was still pleased with the outcome. Meeting the ASD outreach worker was extremely helpful and I only wished I had met her sooner. However we do plan to meet soon and I’m looking forward to gaining some more advice from a lady with her expertise and knowledge of the spectrum. We now play the waiting game to see if the LEA assess and if he will be assessed at his current school or in an emergency placement in a specialist school as advised.

In terms of the discussion surrounding school trips (Allotment gardening project) and my upset at little man being excluded from a number of them only to now be told he will no longer take part did happen but it was after the meeting. However I am pleased my Mother was present and that the discussion did happen. All I will write on the matter is that I do believe little man has been discriminated against in terms of not being allowed to attend and take part in the project just like his class peers. Anybody who is a parent will understand my upset and concern on the matter but although it’s upsetting I have decided not to write about it leaving the matter to be addressed by my solicitor.

The need for running shoes

Ok First I have to apologise for being such a terrible blogger. It’s been weeks since I last posted and as always so much has happened I get fried brain trying to work out where to begin. So I have decided that It’s of great importance for me to report the ins and outs of our recent day out and what a complete DISASTER it was. It’s not easy having problem free days out with a child on the spectrum. Queues, noise, smells, environment are just a few of the many triggers that lurk and pose a threat on your family outing. Well, its safe to say once home and able to analyse the whole situation it was clear to see that all of these and more contributed to what can only be described as a challenging day out. No, it didn’t help that the free bike and kite festival that was put on by the local council was of no real interest to little man. Then there was the fact that he somehow thought we were going to a fun fair (don’t know where he got that idea) We spent the best part of the afternoon hearing ‘Is this bloody it’  and ‘where is the fair then’ No I’m not kidding it really was this bad and worse.

This is my account of the days events I’m guessing little mans may differ. After running around like a headless chicken trying my hardest to organised myself and the three children we finally made it out the door and into a taxi and headed off for what was meant to be a fun day out. We were of to the Bike and Kite festival. This is a free event that is run by the local council and often attracts a crown. Little man isn’t to bad with Crowns it just depends on the environment and his mood. His great with fun fairs the music and lights are a favourite part of the trip. With this I took it upon myself to assume he would feel the same way about the festival. Out the taxi things started well. We met up with my good friend who had a gift each for the children little mans being a model bus. Buses being his “special interest” made this the perfect gift and little man was displaying a huge smile. This huge smile then decided to shy away and hide out for a while as it was only seen a small number of times through out the day.

Little man’s ability to have a little fun was partially non existent at the beginning of the festival. He was beginning to get himself into a mood and getting him out of it is near on impossible. Walking around a few of the stalls he got upset and angry because we were looking at hand crafted jewellery. We had only just arrived and intended to look at everything in due course. Explaining due course to a child with Aspergers doesn’t come easy. Patience! Well, who needs patience? Certainly not little man or so he thought. ‘I wanna go there’, ‘I wanna see that’. I hear you say well isn’t this all children? Yes, to some degree but this was more extreme in many ways. Example! Once we had agreed to do one thing he is already freaking out about doing the next. I admit it had been sometime since we did a day out and I was starting to remember why. We were only safe when at a place of interest and even then it could be a worry.

A break was needed and we grabbed a spot to settle in. I had prepared a feast of a picnic and we were all pretty keen to sit and eat it. SORRY DID I SAY ALL? ALL EXCEPT LITTLE MAN THAT IS. He expressed his disbelieve at the fact we had chosen to sit and eat when we needed to be up and doing things. One of my many techniques as little mans mother is to try and engage him in conversation on a topic of his interest to get him to relax. He was stressing and pointing asking why others were able to do things and he had to just sit and eat crappy food he didn’t want in the first place. My tactics of engagement were failing fast and lucky for me and everyone sat around us A bike stunt show had started in very close view from our chosen picnic spot. Oh yer the blissful sound of…. Well, music and cheering but this was better then the full on wringing I was hearing a few seconds prior. Owning a bike and being rather good on it little man enjoyed the show and flashed us a brief smile. Moments like these give you the encouragement to carry on with your day with the hope of it becoming increasingly better then it had started out. To be honest things did start to go in this direction and for a few hours with the exception of minor problems (the inability to queue for the bouncy slide without displaying his need to get on the slide NOW. The tantrum over wanting me to buy him items that were well out of my price range) things were Ok.

I started to enjoy being there. My daughter was happy playing with a kite we had brought from one of the many stalls. My six month old sat happily in his pram starring at the beautiful display of flying kites and little man had gone from raging bull to a clam child who was pleased with the bubble gun he had brought. Things got even better when he spotted an open top bus parked on the grass. Unbelievable no matter where we go a little bit of little mans “special interest” comes with too. I don’t mean to imply that this bothered me if anything it tickled me! He was overly fixated on buses. His level of interest on his subject was fascinating. I have never seen anybody have a passion for something on this scale. I guess this is the true Aspie in him.

Little man darted to the buses leaving me far behind. Lucky we were with my friend still who dashed after him and explained that he was unable to just board the bus without the given permission of the owner. Can you imagine the terror in our eyes when the owner shouted ‘SORRY THE BUS ISN’T FOR PUBLIC USE’ Oh my god was he really going to do this to me. I sound selfish I know. I should have been thinking is he really going to do this to little man? The thing is I couldn’t bear the thought of losing the blissful day that was so hard to achieve. We had got this far the prospect of tantrums (huge ones at that) was to much to bear:( I guess an angel was looking down on us, This and the fact my good friend had a quite word in the owners ear as this got little man safely onto that bus and saved us all from the terror of what may of been (well for now at least)

Little man was in his element on that bus. I sat on the grass as he explored the thing inside out. My friend followed close behind snapping pictures of my smiley boy. My little girl was still flying her kite and seemed happy to do so all night if she could. It was great to see the children both enjoying themselves. Of and to not have the constant bickering was another joyful reason to be sat with a smile.

It only seemed right to end the day on a high and as the festival was near on coming to an end we decided to make a move. The festival had taken place on a large heath (Blackheath) The heath was huge and the festival had not even taken half the space. For this reason we were surrounded by grass and the children had loads of open space to run around and get all the left over energy out of their systems before heading home. Little man began asking how we where planing on getting home. By this he was obviously referring to the type of transport we would be using. I asked him what he suggested. By doing this I expected him to say lets catch the 54 bus back home. Of course I should have known better then to just assume. ‘Let’s get the 380′ he replied. Ok the 380 is a small bus and it only goes to Lewisham which is only half the distance needed. Then there is the fact the babies pram isn’t far off from being a bus itself! Yes, it’s big and red but only has three wheels not four. I did actually say this to little man and I said it in that exact way. Sarcasm and Aspergers isn’t a good mix and I found myself having to explain why I would consider the babies pram to be a bus. After a bit of a discussion little man seemed fine with my reasons for not getting the 380 and with the promise of riding the 380 on the following weekend as a reward if he manages to behave at school with this we headed off towards the 54.

THE MOTHER OF ALL MELTDOWNS

It was right at the end of our magical day (It had turned out this way) That a storm broke. I’m not referring to those that take place in the sky as an act of god! No, I’m talking about those involving abusive taunts and aggressive, challenging behaviour that are all an act of little man. Yes, we had left the festival and I really considered us out of the danger zone in relation to meltdowns. Silly how wrong one could be. It began with little mans bubble gun running out of bubbles and him entraining himself by chasing his little sister who was still happy kiting along the heath. I heard myself a number of times requesting he stopped and a number of times (all of them) he didn’t. He then decided to take things further and give her a push and a shove for no reason at all. I told him I would take his bubble gun if he carried on chasing or hitting his sister. Of course he did and of course I had to be consistent in my threat to take the bubble gun. The problem was actually getting it from him. Luckily once again the help of super mate was required Little man run and my friend gave chase. We do know that chasing little man is something he desires and we often try not to engage in this activity. My friend rolled around on the floor play fighting with little man. He loved it and it gave me the perfect opportunity to grab that bubble gun. In the struggle to do so I accidentally stepped on his fingers. With this he stood up and scream and swore for me to give him his bubble gun. He then told the world how much of a bad mother I was as I had hurt him. Please ground open swallow me NOW. Oh god it got worse. After a number of hurtful insults (many I have heard before) he then decided sod the 54 the 308 sounded a much better idea. Super friend even had trouble catching him as he ran towards the bus stop even crossing the main busy road running through the middle of the heath. Once he was finally back he decided to walk up to his sister and give her a hard push that resulted to her falling to the floor. It was her reaction that upset me most. She stood up without a word and carried on playing as if nothing had happen. She had become used to such unacceptable behaviour. With this and his on going comments.. Get run over by a bus and die, and I’m the worse mum ever and the fattest being a few I was at breaking point. I know shouting don’t help and it sure as hell wont with a child on the spectrum but I’m only human and Its fair to say I lost it. I had been on the edge best part of the day and I had finally fell. HEAD FIRST. I told him to go away then and with this he did. S**t that’s the thing with children on the spectrum they tend to do exactly that! Go away. My friend was fast becoming a world class athlete and given the location anyone would think she was training for the marathon. Again she brought him back and he sat on the grass with his angry face on. He went on and on and on about how I can control my feet, standing on his fingers was not an accident. Tired of the situation I admitted defeat and called his father who once heard my blabbering over the phone jumped on a bus and took the 25 minute journey to health. Little man had since gave me a quick hug. I think this is because he figured that yes maybe dad is actually coming after all. He says it’s not for this reason but because he don’t really want me knocked down by a bus (I only hope he don’t) He then said sorry asking me to do the same. Yes, I was sorry I shouted but not sorry I had taken his bubble gun or called his father. With this dad arrived and took both the children back home on the bus leaving me with the baby and an exhausted best friend who I love dearly:) And owe a night on the town to.

So what did I learn? I learnt a number of things and here’s a few… Don’t call the pram a bus! Call it a pram, Don’t step on little mans fingers (learn to control my feet) Don’t shout Go away! As little man will do just that. Lastly I learnt.. Buy a good pair of running shoes and wear them during family days out.

RUN FOREST RUN.

LEA make bogus excuses for not assessing child’s needs

At last I finally have time to update my blog. What seems like months has only been weeks. Nevertheless so much has happened in such a short space of time no wonder in losing my days.That’s right today I almost missed my Early bird course (Autism training for adults and professionals) as I could have swore it was Monday. Well I soon came to my senses and got my butt in motion I didn’t want to miss the course as it going so well and I’m really enjoying it. It’s a great opportunity to learn more about ASD and when you have a child on the spectrum you can never know enough.

Well I finally received the letter from the LEA sen unit. It was about time too. I was disgusted with the way they treated me and little man. I wasn’t kept informed on the decision process and considering they had not followed the timescale of six weeks an explanation would have been greatly appreciated. I mean what’s the use of the Sen code of practice if the authorities have no regard for it. I’m not stressing over a silly few weeks or something they delayed the decision if to assess for five going on six weeks. Is it just me or would some kind of a letter and a simple apology be too much to ask? Well it seems so as the refusal letter didn’t state anything in relation to the delay and lack of communication on their part. It did however state their reasons for not agreeing to an assessment of little mans educational needs. Ok I’m not joking when I say at first after reading the letter more than once I did consider that maybe the LEA had made some mistake. Is it possible my child’s case was some how accidentally  been mixed up with another childs evidence. reality hit me like a smack in the face. These people really don’t give a ****. I’m sorry but what the hell is happening here? The LEA state that since little mans school have identified his needs and put certain provisions and strategies into place he has started to make progress in terms of his behaviour. Woo outrageous, Given this excuse I’m now wondering if they even bothered to open the letter I sent requesting the assessment in the first place. Lets see would it be the five exclusions his had since the 1st March this year or maybe it’s the fact his had well over twenty serious incidents recorded against him in the same time frame. I’m guessing it would be something more specific that really swung their judgement like the fact he hit a teacher or managed to escape from the school where luckily I was stood outside. Let’s face it given this level of evidence, the extensive list of exclusions and serious incidents it’s fair to assume that in order to access the relevent resources that my son requires directly as a result of his condition he would need to completely fail first. Let’s be honest as sad as it is his not far off. Well as you can imagine I was gobsmacked (not often Claire is lost for words) but I was also deeply worried about what move I would have to take next. The letter also stated that once the outreach teams had been in and assessed and the school had put into practice the advice suggested by them If it was thought little man still required the Statutory assessment the school could then readmit the assess 1 form. I took legal advice and was told to contact the tribunal service without delay given that I only have two months to appeal then I should not risk waiting for forms to be readmitted and again refused as I wont be able to appeal again in till a much later date (six months or a year I think) Made sense to me and with this I searched for a solicitor to take my case. I really needed my sanity for the children and not only was I strapped for time with three children one with aspergers, one trying to cope with daily life as a sibling to an aspie and a six month old baby I also didn’t want to do it alone. I just wanna enjoy the children for a while and at the same time know that someone is working on my appeal. Lets face it without a statement little man will end up lost and with that I will have to make difficult decisions on what best to do for him in till I can readmit my request. Yes It’s unbearable thinking about but I have to be practical.

Well here’s some positive news I attended the follow up meeting from the 26th April 2010, This was basically to review little mans past month’s progress. I have to say the last meeting was incredibly strained. I felt nothing was achieved and it wasn’t constructive in any way. I became a little emotional and I cried which I regret but sadly couldn’t help. With this memory I wasnt looking forward to this meeting and would go as far to say I was feeling kinda sick knowing it was approaching. This time I took my Mother (Who better than to support and keep you strong) I was surprised to see that this time other professionals had attended and the meeting was looking a little more formal. I felt nervous and uneasy and just wanted to get thinks done. Well I have to say I needn’t of worried so much. The other professionals who had attended where from a specialist school who provide outreach to little man. They were made up from a group of three. There was the outreach worker who works directly with little man on a one to one basis once a week, the headteacher from the specialist school itself and another very nice lady but I was and still am a little unsure what role she played within the outreach team. However she was extremely nice and made it her mission to be fair and understanding. It was also helpful to meet the outreach teacher working with little man. Again she was extremely nice and not only shared her thoughts and opinions on little mans learning and behaviour but she also took the time to listen and encourage me to share my thoughts and opinions. The Headteacher of the specialist school was very organised and direct but not in a rude way. I really liked him and felt he was fair and made valid points and helpful recommendations on ways to best solve current problems experienced with little man. The headmaster and the Senco were also at the meeting and we spoke about the LEA refusal to assess, little mans growing complexed needs and the head made a point of saying that little man wasn’t really being included anymore as he was chosing to move himself away from classroom activities. This I could also understand and is a bit of a worry. The level of support he currently receives is high and integrating him slowly back into the class routine will be incredibly difficult. We all discussed little mans need for an assessment which will hopefully lead to a statement. It was reassuring to know that everyone at that meeting was in agreement with that. So on the whole it went well and I didn’t leave feeling miserable as I had perviously.

So before I get some much-needed sleep I just want to say that all though things have been a nightmare at school home life has been Ok. I say ok as that’s all it’s been but when you have had real trying weeks you fully appreciate the “Ok” days. Half term was good and little man spent a lot of time socializing with the boy next door. They share a love of transport and though little mans is more a obsession his little friend seems ok with it. Yes they had a few disagreements but nothing to explosive. It’s great he has a friend who is happy to be bossed by him Honestly I say this in a joking manner but all parents to children with aspergers will completely get where I’m coming from. It’s also nice to have a non judgemental parent who don’t drag their child away from yours in the fear he may catch Aspergers or just be lead down the route of misbehaving. She is very sensitive to little man and his needs. She allows him over and puts up with his very loud tone and moody strop without ever judging him. I can see he has become more and more comfortable with their family and that is a great achievement because apart from his cousin and his partner in crime at school he didn’t really have a real friend till now. And to be able to hold onto this important friendship makes me so very proud. Like the teacher at my ASD workshop said today. All parents love to feel proud of their child and it’s the same for parents of children on the spectrum only they can be proud at what may seem the simplest thing to a “typical child” but to a child on the spectrum it’s a huge achievement.

Fix the system not the child!

Angry blogs are never a good idea but in more cases than not totally can’t be helped.

I used to daydream about what life would be like when I’m a mummy, Like most young girls I saw the perfect picture of marriage and children. In conversations with friends you would always say I wonder what my child will look like and 9 times out of ten you form this picture in your head. I think we all say we are moving to spain well those of us from the UK. We girls create this perfect image of adult life that of course is not the reality we will come to face. I’m in no way stating my children are not perfect because to me all three of them are perfect in every way and I’m incredibly lucky to be a mum. The point I’m trying to make is we never consider what life would be like with a child that challenged us and our strength to be a parent. do we ever wonder about the kind of personality they may have? I remember little mans birth and the shock when I discovered he had a mob of red hair. I will be honest when I state I was upset by this but only because of society and the way people act about red heads. For this reason little man spent his first few days of life with a hat stuck to his head. When my hormones had settled and the shock wore of I was fine. I was only shocked because it wasn’t the picture I had created in my head, Of course I didn’t care what colour hair he had he was my beautiful baby. Little mans red hair was always to blame for his unruly behaviour people would say red hair fiery temper or oh it’s the red in him that does it! We still get that remark! I feel like shouting ‘ NO IT’S NOT HIS BLOODY HAIR IT’S AUTISM’ I was so worried he would be a child who was bullied for having red hair because as we all know kids are crawl. I used to take him to all the toddler and under fives playgroups in the hope he would have a great social life growing up he would form good strong friendships. He would be invited to everyone’s birthday party or he would be off playing in the park with the other children and I would be sat chatting with the parents. Again reality would bite me in the bum as I was quick to learn I wasnt a school gate mum and little man would often get barred from the park! But regardless of it all I totally loved him with all my heart and always will.

So there is a point to all this reminiscing. Little man like thousands of other children on the spectrum are always being expected to change or fit in with “society” They live life with the consent threat of exclusion if it is felt they don’t fit in with the so-called  requirements of  events and activities they are often left behind. Are you under some illusion that those with Autism & Aspergers don’t feel rejected? It’s the insensitive actions of others that lead our children to the world of depression and anxiety. Every family touched by Autism has a story to tell. Most if not all of these stories are based around parents and careers forever having to fight the system for their childs rights. I ask whats the point of the Special educational needs code of practice, and the Disability Act if the LEA has no regard to the code? I applied for a statutory assessment of little mans educational needs under section 328 of the Education Act 1996. The Sen Code states the LEA must come to a decision if to carry out such an assessment under section 323 within six weeks. Little mans case was to be brought to the panel on the 15th-Apr-10 though this didn’t happen. I waited a week rang them only to discover it had been delayed and would now be heard on the 14-May-10. The LEA told me the delay would be explained to me in a letter in which of course im still waiting on. Again the date past and I called this time I was told my request was denied. It’s the 24th-May-10 and the LEA have still not wrote to explain the reasons it is refused and my rights to an appeal. With this I called Ipsea who confirmed that the LEA where clearly not complying with the code. I have written to the LEA and asked them to release the decision and reasons for delay. I have given them five working days before taking the matter further which really gets my back up! Why do I have to go down this route? Its one obstacle after another.  It’s ludicrous that not only am I having to appeal I’m also having to battle for the required information to do so. It’s easy to see that given the pure state of the education system why so many children are left without school placements. Now yes I am pretty wind up but given the current circumstances who can blame me? In my view inclusion and the whole school approach is pointless if no one is going to take it seriously

Since my last update concerning little man and school things seemed to be up and down, but giving that there were a few positives I was clinging to the hope of a turn around. This hasn’t happened and it’s gotten to the point where I can’t see no clear way forward. It seems that any accomplishments little man has made in relation to school and wanting to go are close to disappearing and all our hard work undone. Now Before I pour my heart out and cry all over my Mac I wish to praise little mans morning TA who I consider to be an exceptional teacher who offers him a great amount of support and even better understanding. His mornings at school are improving and from the conversation we had recently and the comments she writes in his contact book I can only assume she has had some degree of training in working with children on the spectrum and if not then I can only put it down to a gift. He has a great relationship with her and has opened up to her in many ways. On reading his contact book she mentions an outburst he has in class when a teacher talks about the weather being so hot, she goes on to say that to calm down they went for a walk and sat in the playground under a tree. It was then she wrote that after speaking with him it had become clear that the Irritability and anger was real anxiety about the hot weather. I almost cried as for once someone other than me was relating to him and understanding him! Thats all he needs I am confidante that this TA well help my son to grow and over time the behaviour to fade. She is the one person who has taken the time to ask me what I do in certain situations or why he may display a certain behaviour. She is keen to take my contribution on board and happy to try suggested techniques This in itself goes a long way in proving that working in partnership with the parent of the child on the spectrum is extremely beneficial. If this TA wasn’t in class and Little man had this same out burst that involved him being loud, aggressive and dangerously throwing things what would have happened? Exclusion is pretty likely or a playtime missed is another option! Any of these actions would result in further outburst and in addition other punishments. I’m not in any way saying the other teachers are useless! His classroom teacher has over 30 students and it would be impossible to provide little man with this degree of one 2 one support but it’s also the lack of training. How can someone possibly understand if they know nothing about it? A year and a half ago I was ripping my hear out not knowing what to do next and at times still do. I’ve been to a number of classes and workshops, Have created two active social networks and an autism art room and devoted to advocating, reading and researching the condition to better understand my child. But He still brings me a new challenge all the time the whole things a learning game. The system is failing children everywhere all with different strengths and weaknesses. What most forget is just because you are able to deal with the challenges of one child on the spectrum in no way means you will be able to deal with the next! They state our children have stereotyped behaviours but what is this? It’s the same! Just because a child has autism don’t mean his the same as another autistic child of the same age every child autistic or NT is an individual no two children on the spectrum are the same and educational settings should bear this in mind.

I’m pretty sure you are wondering how little man can possibly be experiencing any problems at school given the improvements he has made since working with his TA. Well sadly the TA only works with him in the mornings and once afternoon comes around all that hard work is wasted as little man gets into situations that always lead him into being labeled the disruptive child with the foul language. Since my last school update little man was excluded from his trip and went on to be excluded from school. His on the fifth exclusion since 3rd March this year. There is a week left till half team and if little man gets excluded before then the Head teacher will be forced to meet with the Governors. Since returning to school last Monday he has been placed on a behaviour contract and full-time one 2 one has been put into place. I have no personal dislike to his lunchtime TA and im not trying to blacken him in any way when I say his just no good for little man. It’s with this TA he finds himself in the most trouble. His hit him and called him names and our biggest problem right now is he runs away from this TA which has landed him in some serious problems that I am soon to touch apron. Find a trigger and remove the trigger. Maybe im wrong but it’s looking like the TA is the trigger. Why is little man like this with this TA? Simple little man sees him as a peer not a teacher. Yes he like the morning TA but knows where he stands with her. Yes he also likes the afternoon TA but sees him as his buddy. I just want whats right for little man, yes he has to deal with things better but only if the system operates better. I thank the school for putting all these provisions in place but as my child continues to be excluded and I am still receiving calls relating to behaviour then lt’s clear that the school can no longer meet his needs. So an appeal for the assessment is a must and with them fluffing around little man’s problems are growing.

As for little man running away well its got to the point that this has led to a serious incident in which has caused my child become increasingly stressed over his return to school after the weekend. Little man again has run through the school hall where the After school club takes place and as it was half an hour or less before home time they are busy setting up! BEFORE I GO ANY FURTHER I MUST STATE THAT ALTHOUGH THE CLUB OPERATES AT THE SCHOOL IT IS SEPARATE AND IS NOT RELATED IN ANYWAY OTHER THEN THEY ARE BOTH RUN BY THE SAME LEA. So as little man was running the worker shouted for him to leave. At this point another child who little man loves to play fight with shows up. Now i’m guessing that little man may have shown of a little but also was pretty impulsive when he called her a bitch ( Not good I agree ) With that it is said that the worker said ‘YOUR MUM’S A BITCH’ His friend heard it and shouted something and with this the worker bent down to little mans level and made him feel uncomfortable by how close she came, She went on to say ‘ You can’t talk to me like this I’m not your teacher’ My son may act like his not scared of anything but she scared him. He came dashing down the corridor to find me in the office. He had to be stopped as he tried to run into the Heads office as inspectors were in and having a meeting. He was clearly very upset as he was crying and to me seemed a little shocked. Yes I wanted to go and talk to her but left it to the school staff and tried to do the right thing. Lets not forget this is a school im in and as angry as I was there was mine and other children to consider. Of course she denied it which again brought little man to tears. She claims to of had another adult with her but my son also had another child and it was clear to see he wasn’t lying. Aspies are not good liars and don’t often try to be. I’m upset that after speaking with the deputy head I discover the TA wasnt there because little man run away (AGAIN) I’m also upset that the school refuse to take responsibility  alongside the after school club. They state that although it was during school hours it is the after school club that needs dealing with. However I do have a point that I deem to be strong and worth quoting. A few days prior I received a call at home in the evening from the headteacher informing me and asking me to prepare little man to miss his playtime the following day. The reason was he had run a long the after school club tables and called a member of staff who works for the club a fat pig. It’s too confessing for my child to be punished for something only for an adult of th same club to swear at him a few days later. I now have the challenge of getting him there today. Like it’s not enough. He went to bed crying that he was scared last night and im going to feel awful in these next few hours as I have to insist he goes. How is this fair and why should a child with Aspergers or any child in fact have to attend school fearing an adult. Yes ive explain she only comes at home time but he can’t see it like this yes he understands but can’t get past the fear. So as it’s 5am already and I have not slept a wink regardless of little man having gone to sleep at a pretty decent hour I best finish here and sort myself out. But before I finish I want to take the opportunity to thank everyone for the support and thanks to the readers who joined the groups over on Facebook!

The whole purpose of education is to turn mirrors into windows for EVERY child that looks in one!

For Fart Sake!!!

Like most days things are a little hectic in our household. A few days ago was no exception! Yes after having  yet another not so great day at school things turned a little sour once home. Most parents of children with Aspergers will likely relate when I say at times I feel as if I am parenting a moody teenager with raging hormones with a mouth that you wished  was taped shut due to the inappropriate language that so often flies out from it. Then other times it’s like looking after a toddler when I’m chasing little man up the road or his throwing himself on the floor. Well at times the two will merge together, This combination means one thing only! A full on meltdown.

A meltdown isn’t your everyday tantrum that results because the child is unable to get their own way. It’s an extreme blow up of emotions which to others can seem like a complete exaggerated reaction to the situation. But these emotions have likely been bubbling a way inside like a volcano for quite some time. They can erupt at anytime if faced with even the smallest of triggers. When it does erupt its massive and like any volcano will often destroy anything in its path. Today was the day for our volcano to erupted and it seems to be a biggin.

I felt like taking my own head and smashing it against a few walls. ludicrous yes, crazy I am not, tired hell yer we all were. At least it wasn’t an all nighter ( Something I only used to associate with a Saturday night ) It lasted two hours, A trying and tiring two hours but this is a marked improvement. As many parents of children on the spectrum will know us as a household could off been dealt a much harder blow! Meltdowns can last anything from hours to days! Yes they stop and start but it’s a battle over the same thing and it feels like it’s never going to end. Well I’m alive ( Just about ) Alice ( little mans sister ) she is coping. Daddy his lucky to be somewhere else and Little man? His layed out on the floor eyes rolling and falling asleep completely worn out from all the excitement his caused.

Are you wondering what caused the eruption of volcano Little man? It only seems fair to share given you have read this far. Well it’s kinda hard to explain as it’s a little bizarre. Ok truth be told I just don’t know how to put this without it sounding wrong! Do I just blurt it out and what word is most appropriate ! Oh god sod it!! FART. Thats correct little mans meltdown was indeed caused by the eruption of something other than a volcano but a gush of wind, trump, blow off, letting one rip if you like. Yep a fart! This the trigger was so kindly supplied by his little sister ( Hope she never reads this ) Poor little sis tried so hard to pop one out on the sneak. She should know by now that nothing gets past super sensory little man. He heard it almost immediately smelt it?  that’s also pretty likely. He was like a manic mad child that needed dragging of his poor sister. He was kicking and screaming acting completely bonkers. What made the whole thing worse was the fact little sister laughed when he turned around and glared at her in disgust. Did she giggle with the embarrassment of having just blown off? Could have been but it’s my guess it was due to the fact  it was funny and yes I’m guilty when I say initially I did chuckle too. Little man however wasn’t laughing and just took it all the wrong way. Completely overwhelmed by the whole thing he sat on the stairs for an hour crying and banging. If u ignore the behaviour it often works and the behaviour will often diffuse itself. But when meltdowns are in full swing it’s not always possible as ignoring only caused the banging to become louder.  If I wanted to have a complete and undamaged stair case then intervention was my only option. With this I had to work hard in my mission to convince him to stop. He did eventually but just replaced it with abuse which he offered so kindly in between sobs. By the second hour It’s clear his tired as his finally stopped with the ” You didn’t tell her off for farting” And “I am going to jump from the top of the stairs so all my arms and legs break off” His now in the living room and layed out on the floor calling me fatty ( He has called me this since I was pregnant with my five month old little boy ) His also telling Alice that she is a baby because she believes in father Christmas and the tooth fairy which I tell her to ignore. Well he carried on for the hour till he finally dozed of with red eyes and sore cheeks from all the tears. All this over a little fart. I’m just extremely grateful it wasn’t one of his fathers or we would be looking on a weeks meltdown minimum.

Tears, Buses and awards

So it’s been a while since I’ve updated on the subject of life at home and school. So heres the latest.

HOME

The behaviour chart seems to now be having a sight effect on little man. He didn’t really care about stickers before but since his sister Alice got her bonus reward of £10 on top of her normal pocket-money little man has sat up and took note. But my did he go on and on with his blandishments and pleas for the same reward as his sister! Yep mummy was a BAD MOTHER and he went on to more inappropriate name calling, So much so it’s better I don’t write them down here in the event I may offend others. He spent the whole day till the next day swapping from one technique to the other. None being particularly helpful to his case but nevertheless he consider it to be wroth a try! Well I am exceptionally pleased to report that despite his tantrums escalating into full on meltdowns and me heading to bed early hours with a pack of painkillers in hand due to receiving a verbal head bashing for hours  I stood my ground showing no mercy and indeed not giving in.

Little man has decided to put us through the hell of bedtime once more. As most know already getting little man into a bed time routine is hellish. Yes children with ASD like structure and routine but when it comes to bed then well a lot of that flies out the window. It’s like the Melatonin has stopped working. I know he can over ride the medication but he often goes with the flow resulting in him getting some much-needed sleep. The thing with children like Little man is there tends to be no in between. Your tired or you’re not! Your staving hungry or not hungry at all. There seems to be no build up to anything little man does. When he goes to bed and to sleep he just goes, One moment his wide awake the next his sleeping. And when his awake well it’s the same his WIDE  awake. Being his parent  who is observing his recent changes in behaviours and reluctance to sleep I have come to the conclusion that the worries little man faces surrounding school and his continued obsession with buses are both contributing factors. School is up and down for the little man right now. He recently had a physical fight with his “best friend” Alex that had escalated as a result of a play fight which took place in the classroom. Little man ended up with a pretty nasty mark behind his ear. I will write more regarding school a tad further on in this post right now I want to write a little more about Little mans obsessive behaviours and how these are now beginning to affect everyday life. Little man used to like both Trains and buses but it’s easy to see that now buses are top of his interest list. He lives and breaths buses. I’m not extracting when I say buses are his LIFE. From the moment he wakes till that last moment of conciousness they are fixated firmly  on his in brain, No wonder he has trouble working in school. It’s become very intense and he is very focused on anything resembling buses. His Father got him up and dressed and out the house for school with only minor problems. All this because of a promise made by Dad. Get up and ready for school and I will take you on the bus. Not just any bus but the 194 to west Croydon and back after school. How in god’s name he got through the school day with that extent of excitement mounting throughout the day surprises me. Don’t get me wrong I’m pleased he has an interest and what the hell buses aint that bad a thing to like BUT it’s just very over powering at this present time. Yes we can use the buses as a reward to engage him in displaying good behaviour at home and school but at times I wanna scream “SOD THE BLOODLY BUSES” No I haven’t done this but I’m not denying the moments been close. Having an important conversation with your child only for them to start beeping like bus doors is more than annoying but please go into any conversation with little man with caution because the possibility of him dominating it with his “special interest” is pretty likely. I have been lucky enough to be excepted into a course which I think is run by the ASD outreach in my area called Early bird plus. It’s a new course as it used to just be the early bird which was for parents of very young newly diagnosed children. Now its up to 8 years ( Little man is 9 but thankfully It was over looked ) It is fantastic it’s a small very personal course with about 10 parents but we are all given the opportunity to take two others one being family or close friend the other being a professional from school. I have researched and read a ton of books relating to little man’s Aspergers in order to educate myself but there is always room to learn more. It’s great meeting like-minded parents and the organisers are so nice and more than understanding. I loved that you could see it was more a passion to bring awareness then a job. I got to voice my main concerns at present when It was my turn to speak about my child. Well as you may have guessed School and obsessive behaviours were at the top of my list. These were followed by concerns of bullying towards his sister and use of inappropriate language already after the first class I feel a much more positive person and parent. Looking forward to the coming Tuesdays when I plan to attend with a close friend who relates and is non judgmental towards my little man.

SCHOOL

Well we had the Meeting and lets just say it wasn’t what I expected but then again what did I expect? What I was most disappointed with was the fact it was only the headteacher , the Senco/assisting headteacher and Little mans class teacher who I must add has always been extremely happy to discuss my sons progress and he really seems to care what happens to him. What a shame he has a classroom of 30 something other children. I took a friend and some on from the parent partnership service. Yes I expected a good deal more professionals to attend, We had already postponed and one of the reasons was in order for it to be convenient for others. Regardless of this disappointing turn out the meeting went a head as planed. There was a lot we didn’t agree on and a reluctance to discuss past events given some were only weeks if not days ago. I do wish I had been so much stronger as at the very end I did cry a little. I tried so bloody hard not to but I’m just human at the end of the day and this is my child we are discussing. It’s not easy having him excluded and as his mother being powerless to stop it. The parent in partnership worker felt the meeting was extremely tensed we were in need of someone outside the cycle to help the strained relationship rebuild as yes it was clear to all there is a huge breakdown between myself and the school. She did suggest a mediator which I’m good with however the school seemed a little less keen but you never know maybe. Well the good news is that little man now has good provisions and accommodations in place. He has his own TA for the best part of his structured day ( sadly not much of unstructured time where I consider much of the problem to be ), his own workstation with laptop and visual timetable. He has been taken of the going for gold system as it isn’t working for him. The going for good is a system setup for every class. Each child starts on a gold card and throughout the day can have it turned due to bad behaviour, Once your on RED your out that class and mum and dad are getting a phone call or letter. Well as you can guess little man hit red a lot of the time. I would go as far as to say he sometimes had his card on red before morning play. So he now has his own behaviour chat and with it his own rules which to me seems better for now. We have also started a contact book which seems a good move as I can warn them of his morning moods and report anything I feel will distract his day at school. I also get to read how things are going and see his progress daily. This is something I wish we had started long ago. So yes at present the level of support is good but the Headteacher said the problem is that the current level of support on offer is not for a long period as the resources and staff it uses hence the reason an educational assessment of needs is needed. But the likely hood of this being grunted is low and this was something we were both in agreement on.

In relation to exclusions have they stopped? Well I really thought that progress had been made and yes exclusion were being avoided. On the return from the Easter half term things seemed pretty good but nothing lasts forever and he was excluded on the 5th May for hitting the teacher. It was said he threaten to hit her then swung his arm and his hand hit her face ( This is what the letter stated ) And then there was a number of other reasons basically the same ones as always so lets skip that and go back to the hitting afterall that’s pretty massive stuff. Little man again got upset claiming to be playing with the teacher he said he threaten in a playful way and the teacher was laughing he said he did put his had on her face but didn’t slap her it was soft just playing. It’s my opinion that my son has problems relating with adults in a different way from children. He don’t see a difference and if anything sees adults as peers. He regards a certain TA as his buddy. This lead to another exclusion where it was said he hit them, Again he says it wasn’t meant this way he was playing. The only positive thing is that it’s for the shortest time possible this being just one day. Still will exclusion have a good effect on little mans behaviour? I don’t thing so, It hasn’t so far, why now? We still have to reintegrate him back into school which is always a difficult one as he has to attend part of the reintegration meeting which mostly gives him the hump as he wants to go to class and not sit and discuss past behaviours. Needless to say this has to be done and is an important part of reintegration but that still don’t make the situation any easier.

So school has been a very mixed bag these past weeks but I do wish to end on a positive as often this isn’t the case. Well Little man received an award at school for his mathematics. The ward meant a certificate which stated Math genius. It was presented in school assembly a place little man often struggles resulting in him shouting out and disrupting the whole school, so it was nice knowing something really positive was taking place. I was so proud I almost cried when he showed me. Ok that same day he had a classroom fight and kept leaving the class without permission and was a bit disruptive in class but to say I was proud was an understatement. To see him with that certificate was so much more for me then it maybe would have been to another parent with a child presented with the same award. I’m not saying they wouldn’t be proud of course they would but for little man its massive! I can not tell you the last time he brought a certificate home. His sister yer all the time which made this extra special it was like a rare gemstone. I have displayed it proudly on the fridge and I’m hoping it’s given some company really soon.

AUTISM RAINBOW DAY.

Today Many people all over the world will be wearing a bright coloured T-shirt or dressing up in bright fancy dress as to represent autism rainbow day. Autism Rainbow Day (a global autism awareness day) invites anyone and everyone anywhere within the world to participate and by doing so help raise awareness for autism in their local community. On Autism Rainbow Day, businesses, schools and social groups from all over the world are urged to help raise awareness for autism by wearing different colored T-Shirts that represent the colors of the rainbow. Alison Dix the creator and Facebook friend has really made this a wonderful cause. She has created templates for mask and an autism factsheet for schools and groups to read out today. All this and more is downloadable from the autism rainbow website and information and live discussions are taking place right now within the Facebook Autism rainbow day group.

It’s not to Late to take part. Alison is not trying to raise money for autism just awareness. So if you are only just finding out about autism rainbow day by reading this post it’s not to late! Go and change in to something bold and bright and tell people that today your raising awareness for Autism.

Autism rainbow day has inspired me to write this post in all the colours of the rainbow.

An Inspirational Journey.

With so much to say I really don’t know where to start.

So last week I had an idea! Being me I just had to make this idea a reality. Of course this idea was autism related Yes I’m starting to think that maybe Autism is my “Special Interest” How dare I say my son is obsessive. Well what’s this idea, project or even mission if you like? Well I went in search of beautiful images. These beautiful images would be sorted, arranged and placed together to create a collage. Autistic adults & Parents of autistic children from all over the world have sent me their stunning images and gave me permission to create a collage that would need No words for it would tell its own story and by doing so help us raise awareness for Autism Spectrum disorders.

As I sat at my computer working on this very project I came over a little tearful. I don’t think I was sad I just think I was a tad emotional. We  started our journey a few years previous. I sat at the very same computer but this time the mission was somewhat different. I had to educate myself on Autistic spectrum disorders. When It was first suggested that this could be a possible diagnosis for little man I felt lost. Yes I had heard about autism as Little man had a cousin on the spectrum. But I knew little about the condition. Alfie his cousin was at the lower end of the spectrum and Aspergers was considered a more appropriate criteria for a diagnosis for little man. However this took a huge amount of time. It was both tiring and stressful. My heart goes out to every parent going through this process, Stay strong and don’t give up.

Sat at the computer I continue my trip down memory lane. It’s a long lane full of emotional challenges and certain disadvantages that we had to overcome! But there are also many positive event’s that balance it all out. I have learnt to embrace little mans Aspergers instead of fearing it. I don’t want to be a parent who doesn’t understand their child. Ok  there are times it’s impossible to know whats going through his head but I’m sure that’s just boys in general:) But I get knots In my tummy when I think back to all them times he had unwelcome meltdowns and I was at a complete lose to why it was happening and what to do about it. I wanted to scream! And keep screaming. I dare to think how he was feeling. I just wanted to eliminate the triggers for the unwanted and Challenging behaviour, But to do this wouldn’t I need to know what those triggers were? I didn’t have a clue and needed an even bigger clue to know where to start looking. Goggle had become almost a second mum to me. I relied on it so much. Google pointed me in the right direction just as my mother has done many times. I learnt so much and with this I noticed improvements in all areas of Little mans life.  It was evident that a number of problems were caused by his difficulties with his Sensory processing. I can not begin to emphasize how much time and understanding  you will need when dealing with these sensitive problems. It may take time but what else have you got? I had to analyze a number of different  situations for what felt like forever in-order to work out what triggered certain outburst and social awkwardness. We made a reasonably long list of possibles hence the reason I was shocked the school reported no worries or concerns of their own. I remember a certain child Psychologist telling me “His challenging behaviour would  likely become more apparent at school as he grew” I have to say he was right it’s now became very apparent within school! At least I have more confidence  in taking hold of a problem situation as 9 times out of ten I can work out why it’s happening ( See what research ca do for yer ) Avoidance was the key although depending on what the problem was avoidance was not always the best nor even possible action. School was a big No, No But avoiding it was only going to send the AWO knocking at my door gunning me down like a harden criminal. I also assumed that Cognitive abilities were well within the average range. So his learning was fairly good given that he missed a considerable amount of school time. Not only was little man a night owl he also liked to be a naked one. He hated clothing and as soon as he returns home from school off come the clothes and into the toilet he goes. He did this same routine every single weekday and still does ( At least now the clothes go back on afterwards). So I had come to the conclusion that he hated to wear any clothing when taking a poop ( Including socks ) He preferred to be naked in general. He didn’t like wet food touching dry food ( exceptions being daddies pasta and gravy on a roast dinner everything else a no,no ) He hates scrapping  and scratching noises hence the reason for all them meltdowns and boisterous behaviour  every time the task of washing up came around or scraping the fork across your plate in-order to gain the last mouthful off baked beans. That noise sent him loopy yet I just stood looking up asking God why, why, why. He said it makes him feel fuzzy Little man has always been very verbal so It wasn’t that he could not talk to us to let us know he was having difficulty dealing with things! He just expected us to know. I guess at that young age they always do.  But being a child on the spectrum this little blunder may carry on for many years. Sadly for some it’s forever. Little man has come so far and mostly always  informs us if he is stressing because his having a problem with something. If your child has never undergone a problem with sensory sensitivities then it will be pretty hard for you to really relate. Those that have I’m guessing are furiously nodding their heads about know.

Another trigger that came to light was that Little man had certain phobias that made him understandably very anxious. He loves doors but was scared to use public or school toilets for fear the doors may shut and lock him in. He also had this fear in other situations that entailed being behind doors. elevators posed problems as did shops. Yes have you ever been in a shop and it’s due to close? They often lock the door so no other customers can enter. God I remember and will never forget that first and only time that very thing happened. He was aggressive swearing and screaming. He was seen as a spoilt brat. Then we had the emotional overload kick in. He laid on the shop floor holding my feet and asking not to die. He was just 3 at the time. And no he did not grow out of it we have just avoided it ever happening again. He also fears others if they have a certain physical  disability . He will face the wall  and cry. He don’t mean to be nasty he is truly afraid.  Still the on looking eyes don’t make you feel much better.

I’m very proud how far we have come. Little man is having a range of problems within school and lately he has brought some of these behaviors  back home. But we are dealing with them best we can. However exclusions are having a huge negative impacted  on the family and I really want to find a way for this punishment to be avoided. In my opinion it’s only making his routine suffer and his sleep pattern disappear. Apart from the school issues I think we have a much better situation going on. Home life is more settled and we both have a better understanding of one another. We are working on removing his use of swearing if anything his public use at least for now and his aggression towards his poor little sister who is innocent 97% off the time. Hand on heart I think without many of my new friends within this massive autism community I would not be where I am at today. At first it was just us and I really didn’t expect to much in the way of personal support and advice, especially from the internet but how wrong I was. Blogging opened a door for me to explore so many different places that had connections with ASD. Twitter and facebook must be run by aspies I wanted to exchange advice and tips with a handful of parents (  the more the better!) Wow I have made contacts reaching well over the thousands. Many are with other parents all going through the same thing all with a story of their own. Behind every blog, profile & tweet there is a connection with autism and that connection bonds us all together in a very strong and uplifting way that I guess only us parents of special needs children would understand. I have Created a Facebook page and group that is open to parents, siblings, and those on the spectrum regardless of age,  gender or race. How quick  the list of members has grown is amazing. And to read comments confirming how beneficial social groups can be to those with autism and their families is a very positive thing that makes me smile. I have been truly inspired by many to go that extra mile when raising awareness for autism. I’m so very lucky to have interviewed people like John Kirton from the documentary Autism x6. John you always offer great advice thank you. Also to be raising awareness along  side advocates such as Anna Kennedy ( advocate and author ) who I’m so lucky to have on my Facebook  friends list And other inspirational people I am lucky to have made contact with who are always happy to give advice and I’m sure those in the world of autism would know these great people or a least of  heard of them. Donna Williams, Sally Hugget, ,Polly Tommey ( who is busy with her autism campaign ) are just a few. There are  many more who range from parents, professionals, advocates, educators, Authors, bloggers, autistic individuals and so on.  Wow I really do have many places and people to turn to. Thats just a great reason to smile and cry a happy tear. From Just us to all of us. How liberating. Every time I receive a message or a comment from a parent of a newly diagnosed child I will direct them to this very post to assure them they are not alone. The collage, Group and Facebook page are all a chance for me to give something back.

So now when you look at the images within the collage please see more than just faces! These are the faces of autism. These are the beautiful faces of autism.

The collage filled with beautiful faces of Autism Is now available for viewing on this blog  under the page titled Awareness Collage.