#HAWMC DAY 19 – An Invitation for five

OK, what if I was to throw a dinner party and as a result I get to invite any five people I like! This can be anybody and they are guaranteed to turn up. Now, how do I know this for sure? Because this “Dinner Party”  is just a fragment of my imagination that provides the inspiration for this post, well, that and them lot over at the wego health blog who continue to provide the daily prompts for the #HAWMC with this one actually being some 4 days late!

So, as this isn’t really actually happening in the real world, you should note that I can therefore invite who the hell I like. Yep, the living and that of the dead are not even exempt from the guest list (however freaky that may be)! The Point… There is no hard rule, I may fancy inviting the Prime Minster… Cough… Yer Right… don’t think so! Maybe my dear granny, best mate or even my childhood crush (though I’m not sure how well he’ll be holding up)! I can even invite the drunk guy who physically beats up the bus stop, “YES BUS STOP” right outside my house on most evenings! Bottom line… You’re all invited to see just how this mum’s imagination works.

Firstly I must tell you what I’d throw together spend hours carefully preparing and cooking (and no this wasn’t in the rules but I’m telling you anyway! Now, please note, this is not my speciality, in-fact I can’t say I’ve ever made such a feast ever before… I’m no Nigella unless you count nugget surprise as posh nosh? Yer, I thought not!

My menu is in fact inspired by none other than Pinterest currently one of my favourite online places to be. The recipes I chose had sold themselves to me through there mouth watering images that I’ve either re-pinned or come across during a blog reading session.

Starter: Tomato Basil Fresh Mozzarella Salad
Pin originally from bellasblog.blogspot.com

Main: Lemon Chicken
Originally from annies-eats.com

Looks yummy doesn’t it?

Dessert: Key Lime Cheesecake Bars
Originally from bhg.com

And let’s not forget what we’re drinking! I chose the very pretty and hopefully tasty drink “The Taste of Summer”
Originally from theregoesthecupcake.com This would defiantly be on the menu.

So, I guess the only thing to sort now is the guest list…

OK… The first would be my Late Grandmother who I referred to as Nanny Peg. My Nan lived with us or rather we lived with her! Not that my mother lived elsewhere, we all lived together. However my mother working full-time and my father not living at home made such an arrangement ideal. Plus I loved it!

My Grandmother was a very down to earth woman, however brought up in London’s Eastend meant she knew how to look after herself and her family. A single mother of two, who worked nearly all off her life (even when she watched us after school she still worked part-time during the mornings). I admired my grandmother for the person she was, very strong-willed, a woman who wasn’t afaird to have an opinion regardless if the opinion  differed from that considered to be the “norm” Open and honest was just one of many characteristics making my grandmother the wonderful person she was! Of course we were close, like you wouldn’t beleive. It was hard when she got sick and by this stage she had moved in with her son, my uncle, as she needed lots of rest! By now I was 17 years old and found I missed her dearly. Nonetheless I found myself spending fast amounts of time with her and although this was something I loved to do, sadly it wasn’t just for social reasons. My grandmothers Kidneys were failing and she was very sick. Dialysis 4x per week which required us to be travelling back and forth into the city to London’s guys hospital. Sometimes I’d come home alone as she’d be kept in for something or another. Other times we’d enjoy doing a detour on the way home, off we would go to chill in a cafe or coffee shop and chat for an hour or more. The above continued for many months in-till my grandmother started home dialysis which required her to set this up herself not 4x a week but 4x a day! It was quite simple, the machine was doing the job her kidneys were failing to and if she didn’t do it she’d die and no one was ready for that, especially me.

I can’t remember which day of the week it was but a week day it must have been as my as my uncle was working and my grandmother had told him that she was going to call me to see if I wanted to visit and have some lunch that afternoon! I never got that call… the only call I got was the one that suddenly changed my world forever, the one that caused me to feel such a indescribable pain, one I’d never experienced before and never wanted to again! With the phone to my ear, I stood looking at those before me going about their day as if in slow motion! Inside my heart was bleeding, outside my body was physically & uncontrollably shaking, my feet rooted to the spot I was stood at! I tried screaming but the words failed to come out… I never got to say good bye, I just wanted to tell her how much I appreciated her, how dearly I loved her.

Quite strangely it wasn’t my grandmothers kidney disease that ended her life but a heart attack instead!

My Nanny Peg would be the first on the guest list! I’d tell her the words I still long to and introduce her to my three beautiful children. I discovered I was pregnant with Little man on the day of her funeral. I still believe he was her gift… my grandmother never did anything by half’s and was the first person to teach me that important lesson that “Normal doesn’t exist we’re all individuals!” My grandmother also once told me that… “Whatever Normal is meant to define, it’s boring anyway! I do hope she’d be proud of her great grandson as well as his 2 siblings! I also hope that she’d be proud of the person I’ve become in the 13 years she so sadly went away. 

My next guest would have to be my very good friend Donna. She’s a massive support to me and we do so much together. Since having the children, there’s not been many friends able to stick around to maintain a friendship. I think Donna likes the fact we’re your “non typical” type of family and to be honest I appreciate that she enjoys the company of her sometimes crazy mate who often struggles to know if she’s coming or going. 

My friend Donna along with my grandmother would actually turn out to be the perfect guests as they are both strong, outspoken characters which really highlights why our friendship is a strong one. Donna does have some of them same amazing characteristics about her, and although she is much to younger than that of   my grandmother, these two ladies would probably get on well.

Now, you may of expected a guest list of sexy men and A listers, you may actually consider my list a tad boring? Truth is I’m a family girl hence why guest 3 would have to be my amazingly wonderful mother. My mother continues to support all that I do and was amazingly supportive both before and after Little mans diagnosis of Aspergers Syndrome. My mother is a really relaxed person, she is able create and hold an awesome conversation and is an intelligent women regardless of whether she thinks so or not. I love my family and along with close friends I don’t think I could have dragged my arse through these past few years and remained intact (mentally that is)! A dinner party wouldn’t be incomplete without that of my mother and to see her sat with my Grandmother, the mother she sadly lost, would be an image I’d cherish till the day I died.

OK, Guest 4 … Now this maybe somewhat not what you expected, especially following the announcement of my first three guest, but for me the choice of my next guest is a logical one! Hans Asperger, the man who gives Asperger’s Syndrome it’s name! 

Now, I wouldn’t change Little man, though some difficulties he experiences I’d of course fix in a heart-beat. I love my child the way he is and am no way looking for the so-called “Cure”

I’ve always been extremely interested in psychology, the working of the mind, why we as humans do the things we do! I’ve had to learn all I can about the condition my child has been diagnosed with which has therefore brought about much interest in the subject as a whole. I’d love to ask the man who gave my child the “label” he holds today some questions. What with it being his discovery, I’d love to learn more about his past studies, hear his thoughts and pick his brains. It would be wonderful if he’d be willingly to shed a little light on the grey areas helping me understand autism  just a little more.

Hans Asperger, the medical professor who passed away in 1980 2 years before I’d actually made my appearance in this world, died having little if no idea what type of impact his studies into medical psychological disorders and that of the condition he referred to as “Autistic Psychopathy” (AP) would have on those in the world today. His studies and there findings recorded within over 300 publications were largely ignored during his living years, that was in-till the last year of his life “1980” when suddenly others become interested in his findings and that of the “Autism Spectrum” It was only then that the condition known to us as Aspergers Syndrome, got given its official title after that of its discoverer. Sadly regardless of the rise in those bringing awareness for the condition, it is still sometimes disregarded by many!

Hans has been described to have displayed the very characteristics he described as AS traits. A talented & intelligent man who was described to exhibit the black & white thinking style of someone with AS as well as that of his language and learning skills. Han Aspergers has been noted to have done some great things such as opening a school for those described as having AP and AS. Sadly due to the bombing of the school during the war it was therefore destroyed along with many of the earlier papers he wrote on the autism spectrum during that of the 1930’s and the early 1940’s.

Its documented that Hans Asperger was a kind and caring person who’s passion was to get the children he believed to be on the autism spectrum an efficient & decent education therefore enabling them to approach their adult lives as happy young people with good prospects and an array of opportunities ahead of them.

Sounds like a man who shares many of my interests and defiantly someone worthy a seat at the table.

Oh… I almost forgot, I’m a dinner guest short!
OK, the last dinner guest would have to be… MMM…. let me think… MMM… Oh yes, “Robbie Williams” Why? Because he can provide the entertainment’s and his pretty great to look at too!

 

Post 19/30 wego health #HAWMC

Related articles

• #HAWMC DAY 17 – Learning the hard way is often the only way (aspergersinfo.wordpress.com)
• #HAWMC DAY 18 – Inspiration (aspergersinfo.wordpress.com)
• Dinner for Five (#HAWMC 19) (butterflylessons.com)

The good, the bad, and the dam right ugly!

This post is brought to you today bearing Mixed news, developments, and gratefulness.

Let me start with the good news!

Many of my readers and loyal followers will be aware of my struggles in obtaining a statutory assessment of Little man’s special educational needs. Well, after a refusal, pending appeal tribunal, school resubmitting the assess one, the prospect of hours of mediation with the LEA on the 13th of this month and a whole lot of stress! The Special educational needs panel have made the decision to make a statutory assessment. With this the LEA also informed me that they well contact our preferred specialist school to ask for an emergency assessment placement.

I’m not under any illusion that it’s all rosie from here on! This is just the first step and given how hard it was to obtain it, nothing can shock me. The decision a lone has taken 7 months from that first request that was refused. It’s extremely frustrating how back on the 1st March when I first requested an assessment Little man had only uncounted One exclusion, and now it’s more like ten! A great deal of stress, tears and constant worry for what? It’s a disgrace that your child needs to be seen as totally failing before anybody looks up and takes notice. What ever happened to early intervention and every child matters? We have all these rights when it comes to our child, but who has regard for them? Do they not realise that by letting it get “This bad” is like allowing our children to become “emotionally unhinged” If this is the process to obtaining an assessment, I’m dreading the decision to statement or the content that statement may contain.

However for now I’m just pleased we are a step closer and things are at least moving in the right direction. Little mans emotional needs are my main concern as without emotional well-being there is little point of anything else. I just hope all his needs are taken into account when decisions are made in relation to emergency placements.

So.. here comes the big fat bad news!

With everything good that happens, something totally lousy often follows. Of course we are a prime example of this. Little man went back to school on the 28th September after a fixed period exclusion of two days. However he had only just about got his foot under his desk when…

If you haven’t guessed it already then Why not? 🙂 Yep Little man was excluded once more for a fixed period of five days. So that’s three exclusions in around 11 days (Oh and that’s counting the weekends) However this exclusion comes with a twist! IT MAY WELL BE HIS LAST! Permanent exclusion is on the cards and to be honest I’m not at all shocked nor surprised. After all Little man + current educational setting = affliction and scandal.

So it would seem that after all these exclusions, school know see what I see! IT’S NOT WORKING! You would think that after something has been done two-three times max, and it’s having no positive effect, it’s a done deal. I’m so furious that it took this level of action to come to the same conclusion I did back in March. I’m not saying he should get away with anything and everything, but their have been so many incidents that have been a direct result of anxiety. Of course there has also been times my son has been naughty (He is 10 years old) but I feel even then some less extreme forms of punishment could be given. Even an exclusion that was unavoidable can’t have a desired affect. How can it when his excluded so often?

If I was asked a year ago if I could see this happening one day in the future, I would have answered “Yes I could” Ok maybe not right now maybe not in a months time but sometime in the future. Now some would ask how? How could I have guessed this would happen, when a year ago Little man’s school stated they had NO CONCERNS? I quote “He is very well behaved at school” I heard this a thousand times, and often I questioned myself.. Was it me? Why was he only showing challenging behaviour indoors? It was quite simple really! Little man spent so much time at home and not at school it was near on impossible for them to say otherwise. Lets face facts. So much time was spent judging me as a lazy ass parent who just didn’t fancy taking her child to school. I don’t think so, life wasn’t a picnic and sleepless night, refusal to get out off bed, get dressed and go to school was an exhausting experience (Nearly as exhausting as this one) As soon as he got the “routine” and he started to see school as something that he needed to do, something that wasn’t an option, he recognises that he had to attend and did. With this the school recognises that yes actually he can be challenging and with this comes a new pattern! Exclusion, reintegration, exclusion, reintegration………..

I should know more then anyone that yes, Little man can be a “handful”. But as his mother I also know that he can be interesting, clever, funny, polite and caring.

On his return to school that day I had already noted in his contact book that he was anxious. What with missing his trip and a serious incident that happen at home, he was like a ticking time bomb. The reintegration meeting had only been a few minutes in when problems began. He refused to sign the new behaviour contract as a new sanction was added. This sanction was to spend time out of class and In the office with the head teacher. I feel he explained his reasons in a reasonable manner, minus two swear words. He stated that he didn’t like being in his office due to past incidents like.. Having to tuck school shirt in or miss play and confusing statements made by the head. Some statements made by the head have caused little man distress as the head hasn’t adjusted his language as advised by specialist teachers who have assessed little man. He still uses metaphors and other complex terms that little man just don’t get. Little man has often taken things he has said literally  and he can ponder what his said for days on end trying to work out what it was he actually meant.

With little mans refusal to sign his behaviour contract and his odd use of a swear word, it was becoming clear that the head teacher considered calling it a day. However before doing so he told little man he was going to in-force the contract regardless of him not signing! Well, little man pretty much lost it then. He was close to tears and ripped up the contract and all the copies that he could find. This was contract number three and back when he first signed that very first contract he was made to believe that by doing so he was in control and was making decisions for himself which gave him some control and responsibility . He now felt betrayed, like the school were somehow breaking a law of some short. From then on things got worse and sadly he swore at the head telling him he was a F***ing Irish idiot (Not great I know) Yes it wasn’t on and he had over stepped the line but by in forcing the miss play time sanction then and there was pretty crazy. It was like pouring petrol on the five. I stood in tears as I watched Little man flying through the corridors hitting himself and the wall. I knew then I should take him home! I knew then he would face yet another exclusion. So as I took yet another one of those phone calls that evening. The ones I’ve come to know all to well recently! I just hung up and cried. I didn’t just cry for little man, I cried for every child like him and every parent like me. (And yes there are many families in the same position)

Over 75 per cent of children who are excluded have special educational needs (SEN) and exclusion rates for children in the middle band of special educational needs are 17 times higher for children without SEN. 27 per cent of children with autism have been excluded from school. Government figures out today show that children with SEN are over 8 times more likely to be excluded than those without SEN. (Sonia Sodha)

Surly these statistics highlight the sheer state of the system. Yet what is being done to change these figures? Not much from where I’m standing.

So now we have a new set of problems. Yes, the LEA will assess and No I have no idea when and where. I will attend a meeting with the Head teacher on Monday, so Lets just wait and see! after all what choice do I have 😦

Lastly a thank you.

Message to all my readers, loyal followers, new friends and old.

I cannot thank you all another for your care & support. I didn’t know the world was made up of so many caring people. I thank you for your comments, messages and your time. I’ve made some fantastic new friends and I discovered so much along the way.

The facebook page has turned into a raving success with almost 3000 members and growing by the day. I am so thankful to have found a wonderful admin team who like me have a passion to raise awareness. They have helped create a great, supportive page and for this and their great advice to me and others, I’m truly grateful. Thank you ladies 🙂

How could they be so heartless?

Hello all..

As most will already know (Some more than others!) This week hasn’t been a good one. Yes,It’s been a complete nightmare in fact.

It seems like it’s been a long time since I’ve posted anything positive. What can I say? Life isn’t always kind (More so the people in it!) I feel I’ve been pretty decent when choosing what to and what not to write in a post. There is a great deal of stuff I hold back, for a number of reasons. Yet those who read the blog often comment to express their outrage in the treatment little man has faced, and the hurdles we as a family have had to climb.

Yes, we have faced some trying times (More this year, then ever) but… this week just took the biscuit.

I’ve stated more than once my upset towards my sons exclusions. No mother wants this for their child! I touched upon my child’s battle to attend educational trips and activities, how his self-esteem is becoming crushed every time his considered to be a “liability” by those that don’t truly understand (Or chose not to.) As stated above! I’ve held back on the finer details on all these issues. I’ve done this for many reasons, one being the reaction and treatment I received from my child’s school in relation to past post. Now I’m pretty feed up with people making me feel crap for expressing myself, after all isn’t it my human right to speak? This blog is my place to let some tension out. I wont be made to feel wrong for doing so..

I love my son! He, like his brother and sister are my world. Their isn’t a thing in the world I wouldn’t do for them.. not one! Little man didn’t ask to be born with AS. He didn’t wake up one morning thinking, “I’m gonna act like a complete brat today” Yes he can be naughty, he is a nine-year old boy. But.. there are times that behaviour are results of his AS, you just need to know when! Little bad wasn’t always “challenging” at school, far from it in fact! Little man was more quite, and when he was there (Sometimes he would just refuse to go, no matter what I tried) he would often cope, letting it all out once home. This seems to be a common problem for many parents of children on the spectrum! Their child displays “odd” or “challenging” behaviour in one setting, but not the other. Sometimes I wished that was still the case. This proves that once little man had a good routine in terms of attending school, he became more challenging in the educational setting due to an array of things. Sensory, environmental, anxiety e.g. These are a few challenges little man and other children on the spectrum encounter daily. Little man has trouble dealing with these pressures. Little things become massive, voice tones become confusing and somewhat sarcastic or aggressive. There are triggers EVERYWHERE!

Little man was given Six fixed period exclusions from March to July last (school) year. This school year he has already bagged himself another two. Shocking seeming we are only just in September, the very first month of the current school year. I mentioned before that I consider some of his exclusions to be unjustified. The trips well yes, I feel he has been excluded from these in a way that can only be described as discriminating. No more is my child told he cannot take part in educational trips and activities, he is now just excluded on the days they take place! I feel totally powerless watching my son be rejected from one trip to another. I am outraged at the way the school have dealt with exclusion and how they have no regard for our privacy. The current situation is a total mess! I am appalled at a number of their recent actions. These actions are completely unacceptable! They highlight a great lack of respect for me, Little man and the family. I feel we are disliked! My child for the way he is and me for the way I advocate for him. I feel we are treated this way from those I should trust. There is no longer a part of me that trust them. This totally saddens me. I’ve tried working with everyone. It goes no where. It’s one big disappointment in every way.

Last week Little man was given a fixed period exclusion. He missed swimming due to this exclusion. He had been having a terrible week, to the point I had to keep him home one afternoon, and contact the education welfare officer. This was so I could express my concerns over a current problem he was having involving his sensory processing, and how others were not able to understand his genuine upset. I was advised to return him, but expressed my fear that in doing so may result in him getting into trouble due to his anxiety. I would rather he stayed home through a decision made by me then have yet another exclusion on our hands (One brought on my anxiety and frustration.) The next day Little man returned! Did I have a sick sense? Maybe! Yes, little man was excluded by the head teacher at 6pm via the telephone.

I hate that we are never notified of exclusions earlier, or better still on collection from school. Getting Little man into an evening/night time routine has been difficult and having them excluded him at these unreasonable hours is just not on. I feel that having to always inform him of his exclusion is unfair. It’s not great being the one to inform your child that they have been excluded, will not attend a trip or another educational activity. It’s never been an easy task, but never as hard as his current exclusion, the one he is currently serving.

I’m not referring to the above exclusion but the exclusion we were given on Wednesday evening at 6.20 pm. This was not a simple exclusion but an extremely hurtful one for little man. I knew it was coming due to something little man was told not five minutes before the call. (This is a whole other shocking incident, that I will not yet comment on) Shock and disbelieve hit me when I was told he would face yet another two-day exclusion. He had been back two full bloody days! Teachers training day was this Friday meaning day two of the exclusion would be Monday. This was the day Little man was to attend his trip (The big trip) the trip he had looked forward to. Why? Because he would be going on a coach! A few weeks back Little man had a massive meltdown in the supermarket. He didn’t sleep and was displaying challenging behaviour the entire night. There was no possible way both the children could attend school that next day. However I went to speak to Little mans class teacher. It was discovered that the teacher had left the class that afternoon telling the children to display good behaviour while he was away, or No Trip! They had no idea where they were going as of that time, yet little man was incredible excited. I was told by another Teacher (TA) that little man was becoming very upset as a peer was not doing the right thing! Little man thought this meant the whole class would miss the trip! I spoke to little man that evening and he explained that his class peer was not being very good and the whole class would miss the trip. I had to explain this wasn’t the case. Little man was pleased saying.. “No one will ruin this trip for me” He was double as excited on discovering the type of transport we would take (Yes I did say WE, and we means Mum! I would be their to.) He repetitively  asked each day how many more days were left to go. Now this has happened! I was expected to tell him. I was the one who had to hurt him. Maybe he knew deep down this would happen, maybe this is the reason he acted the way he did when his friend misbehaved.

Angry I was fuming..  1) This was even happening. 2) The way the exclusion was decided and when. 3) The fact I had to tell him. 4) Yet another trip missed. 5) This is a double punishment!

Little man cried till his eyes were sore. He spoke between catching his breath. He was broken. There was nothing I could say nor do to make it better! The whys kept coming, followed by “Please mum go and speak to them and ask them, Please) Its Saturday early morning and I am being completely honest when I say his still hurting.

How can they be so mean! I do not agree with this exclusion, it was done for reasons I don’t need to spell out. It was another knock to his self-esteem. This treatment is nothing other than horrid. Exclusions on trip days are a double blow. Not only will he feel he doesn’t fit in he feels he wasn’t wanted on the trip. Can you blame him? It’s not just the out of school activity he missed Thursday, Mondays trip, or last Fridays swimming! It’s all the other activities his been excluded from last year. It’s far to many. Please correct me but exclusion isn’t working so why use it? I wouldn’t mind but some weeks I find out his done something that to me is considered more serious. Then there are times like these! He is excluded for something far less serious resulting in him missing out on trips and activities. How does this system work? Forgive me I’m lost.

Lastly I want to say that yesterday my blog was given a good going over! Sadly for the wrong reasons. Maybe an update on exclusion number eight was sought after, or print outs were needed, who knows. I want to say that this blog is not written about anything other than my life with a boy with Aspergers. Sadly this is our life right now. This blog is aimed at others like me (Parents, carers or families parenting an AS child) It’s also their for those on the spectrum and anyone else wanting to learn more about how life can be with a child with AS. Some days are good and others not so great! But this is it.. Right now our life is a battle. I can’t stop it, no matter how hard  I’ve tried! Therefore whoever wishes to read this blog, then do so for what ever reasons. But those who do should understand that this is what is happening right now in our life. My son is already low in confidence and the above is not helping fix this. No aggressiveness or treats will be expressed within in this post, just pure tiredness and great upset at this horrible mess. The fact Little man now awaits an appointment with a specialist because he makes himself say sorry to god repetitively in his head or aloud, every time he acts a certain way, to avoid bad things happening is a worry and only highlights how bad things are becoming.

I hope the school have a fantastic trip without the disruptive little aspie, known as my son.  It wasn’t just a “Trip” for little man it was his chance for him to feel valued and build his self-esteem!

A literal thinker.

This post is based on my sons understanding of language. Many parents of children with ASD will be able to relate.

Here I’ve taken a few of mine and Little mans memorable  conversations in an attempt to highlight just how literal someone with autism and Aspergers can be. Though these are quite funny and harmless, there have been times when little mans literal understanding has fuelled anxieties and caused him a great deal of stress. Growing up little man has struggled to understand jokes, metaphors, and sarcasm, with this becoming more apparent with age. It’s quite stressful at times as he won’t always express that he hasn’t understood, Instead his anxiety will be displayed though highly challenging behaviours. These such behaviours are the reason we as parents, teacher, friends or other should learn to adjust and simplify the language we use. Over time Little man has learnt that when I turned and said to a friend in a stressed out tone of voice  “I’m gonna kill that boy in a minute”  I didn’t actually mean it!  Still it’s rather sad to think that at one stage in his life, he considered his mother the murdering type.

Well, with that I will leave you with some classics.

Mum: “Do that once more, You will not be going on YOUR bus tomorrow.”

Little Man: “It’s not my bus! It belongs to the metro.” (Said why screaming and crying.)

Mum on the phone having a conversation with a friend. “I still have a way to go. I’ve lost a STONE and a few POUNDS so far.”

Little Man a few days later. “Mum did you ever find your STONE and few POUNDS that you lost?”

Walking to school one morning.

Mum: “G you’re FLYING” (Zipper down on his trousers)

Little man: “I’m not flying Mum! I’m walking.” (Said in a very moody tone)

Mum: “Keep it up and you’re going to SEE!”

Little Man: “I can see already thank you” (Easily confused as pure sarcasm)

Mum: “Go wash your face, Its BLACK.”

Little Man “you’re being racist mum”

Little Man “Mum why would someone kill CEREAL?”

Mum: “What?”

Little man: “The man on the news said he was a SERIAL killer.” (G already watching the news as a five year old)

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.

HALF TERM.

My god it’s that time again! It’s half term and us mummy’s and daddy’s will have to get our heads on and start thinking  what to do in the way of keeping them little monsters entertained. Half term comes around so fast’ it only seems like yesterday they were on Christmas break. My two seem to become so bored it’s then that we have problems as they always argue. Little man wants Alice to play seems to be a good thing as this used to never happen he would prefer to play alone. But and yes this is a big but! When they do play together it’s all on Giovanni’s terms. This is annoying for Alice as he tells her what she has to say,do and act in the game. It always seems to head towards Alice having to go on a bus or a train which as you can expect after playing this game 1000 times it becomes some what boring. The refusing in wanting to play seems to be what gets to G most causing him to often hit his sister

So unless i find something that’s going to keep them both on a high  i’m in  trouble. So here’s my plan! Butlins! A three or four day holiday at butlins. Me the children and they dad went a few years back and they seemed to really enjoy it even through at the time they were both sick and vomiting everywhere we went. So after speaking to hubby we have decided to check some prices out on the net and arrange a trip some time in the week:)

So if we can get Butlins for a good price then that’s us sorted for a few days of the half term. Februaryis never a great time for money as everybody knows:( Just having had Christmas and Alice’s birthday doesn’t help. There are some fantastic sites that let you know all the top events that are taking place in your area. I have often searched Google for free events for kids taking place in the half term. There seems to be alot of play groups that offering trips to the zoo, coast and other places. Sadly these never seem to be a option for us as G doesn’t like the idea of attending events and groups like those on offer. Alice seems to follow her brother on this on.

If anybody knows of some great places and ways to entertain the children this half term then why not share them with other parents that are a little stuck this half term.

Will let you all know if we go on our trip. And will post some pictures:)

ALL NEW ASPERGERS VIDEOS

Just updated my vodpod:) I have added four new videos.

Some really good ones this month that i enjoyed watching. Check out the faces of autism. I was unaware that all these people had been affected by ASD! Was you? Also a great video offering information on the spectrum.

All new videos can be found in my sidebar in the vodpod widget.  Let me know your view by posting a comment. Sit back relax and enjoy:)

What is Asperger’s syndrome ?

Asperger’s is a communication disorder.  Someone with AS would have poor social skills that family and friends may be able to spot from a young age but in most cases these poor social skills become more and more apparent as the child grows older. My son is now 8yrs old and yes i would say that AS has become more apparent in these last few years .

A child with AS may seem withdrawn wanting to play alone or the child may be loud and annoying to peers. A child with AS may seem a loner. Nearly all children with AS with have a special interest. This special interest will  dominate the child’s conversation meaning he/she wants to speak only about there interest. The person with AS will know a great deal of information on this topic/interest. My son has always loved trains and bus. It sounds silly but it is the working off the doors my son is most interested in. He can speak about how they work for hours and hours. He also could tell you where each bus is heading and all the stops on each train line.

Sensory sensitivity, Motor clumsiness, Routine and Language are just a few more things a child with AS may have problems with. Im sure we will touch on all these somewhere along in this blog.