Aspergers and how it really affects us as a family

Some people comment “It must be so difficult for you as a parent” My answer is always the same… “We’ll, I don’t really know any different”

You see, your born with Aspergers Syndrome and given little man is my first child it means I’ve been parenting a child on the autism spectrum for some 12 years now. It’s not like he suddenly got it and as a result everything had to change! You adjust from child free young women to mum and you adjust in the way that works for you and your child regardless of any condition or disability.

Ok, that doesn’t mean we don’t have difficult days… God only knows we do! But we have good days too.

The thing is, little man isn’t sick, his not got a disease but a condition. His a child that is very able he just struggles within certain areas of life but is able to learn skills to make these areas more comfortable.

There are some very difficult challenges that come from parenting my little man, the lack of sleep is most probably one of the hardest. But then so is watching him become extremely anxious and upset and being powerless to fix it.

I’ve mentioned before that for us the “label” isn’t an issue. It’s my opinion that many families need to acquire a formal diagnosis to open doors to services (that even then you have to battle to obtain them). Autism is a spectrum and although some families don’t feel the need to seek an official diagnosis, many others do.

A younger Little man with a younger Alice just before diagnosis

However, there are some downfalls of that diagnosis and that’s the way others suddenly treat your child. We found ourselves fighting a discrimination case that we brought against Little man’s old primary school as he was forever excluded, bullied, isolated and more. The good thing the label did do, was give us the grounds to bring a case and ultimately win it.

The truth is the official diagnosis helped us get little man the education and treatment programmes he needed! It didn’t change Little man, he was still the same little boy he was the day before diagnosis… Yes he had Aspergers he just didn’t have Aspergers on paper!

Little man with baby brother Harley now 2

In all honestly, life is much harder when your child has Aspergers but mainly because the system… It’s the system that needs fixing not the child.

Early intervention is extremely important as we all know. Nonetheless 18m to 2-year waiting lists to even see a child paediatrician is just diabolical! It’s in this space of time your child starts experiencing certain difficulties but has no access to the appropriate services! By the time he has the diagnosis the difficulties are now boarding on extreme yet your waiting another 18 months for an assessment for recommended treatment of appropriate programmes.

Little man’s siblings do often find things difficult especially Alice-Sara who has often experienced violence at the hands of her brother and his unpredictable behaviour. Yet, she has always been a sister to a brother with Aspergers and although this doesn’t make things different its still all she knows.

Another sibling war

We get on with things… We are presented with problems such as that above we tackle them and we keep on tacking them in till improvements are made. Sometimes these are made quicker than others.

I’d be lying If I said little man’s Aspergers didn’t affect us as a family… Of course it does! But life isn’t unbearable, it isn’t a total display of darkness. Days spent full of meltdowns and distress. Sometimes Aspergers doesn’t come into it! Not everything he does is down to an Aspergers trait, sometimes his just having an almost teenage moment and although behaviour can seem challenging its just that of being a child growing up and having a moment of hot headedness.

Aspergers is apart of little man but it doesn’t define every aspect of his personality and even when it does it doesn’t have to be in that of a bad way.

Aspergers makes little man more goal orientated and rule bound which can be an extremely beneficial trait for a young boy. He is passionate and honest (most of the time) and very intelligent in many areas.

Parenting little man has also made me change as a person. It’s introduced me to a whole new way of thinking. It’s given me drive and passion, opening my eyes to what it is I’m good at and what I want to do with my life.

It’s brought me here to this very blog, its got me writing, sharing something that’s important!

We’re happy and although somedays we may seem as though we are not! We are… We are happy!

A Mothers Reflection

This is me, ‘Claire Louise’ daughter, sister, friend, blogger, mother of three… A Human Being!

Yes, this isn’t my most flattering picture, in fact I look a mess, but that’s not the point I’m trying to make here!

A year back I wouldn’t have dared post this image of me looking so worse for wear. But this weekend all that changed!

Little man had a meltdown, his first in a good few weeks.This meant it was a big one… Though huge is a better word to describes it! What with the looming return to school, little sleep and a whole host of other issues, he exploded and did so in a deadly fashion.

It was little sister who was his target and he hit the balls eye with her every time. I by this point had become a woman close to breakdown and as I saw him mid air, ready to inflict a karate style fly kick aimed at his unsuspecting sister, I finally lost it.

Flying of the opposite sofa I wrapped my arms around his waist and as I pulled him back we fell to the ground. He flipped, went ballistic, angry doesn’t seem a strong enough word. Little man does this certain facial expression which consists of him sticking the tip of his tongue out as he bites down on it. When I see this I know his now capable of going to far! His totally unpredictable and this scares me.

I was right… He went mental, trashing and hitting out at all in his way! Alice-Sara and the littlest tot had by now escaped into the garden and as I watched the mother of all melt downs unfold, it was now my turn to lose my cool! By this point I was screaming, swearing and bombarding him with orders mainly consisting of “Get out of here right now!” He throw some pretty nasty insults my way too and I’d just about heard “I don’t want you as a mum” one to many times!

“I hate you #%*+##” he screamed while throwing himself at me.

“Well I don’t much like you, maybe you should go find some place else to live” I roared!

As soon as the words had left my mouth I wanted to take them all back. I’d lost control and responded through anger, something I know doesn’t work with little man. Well, at least the shock had stopped him in his tracks but only because he had turned and gone running up the stairs. As his door slammed shut with an almighty thud, I felt my legs buckle from beneath me and I dropped to the ground in a messy, unhinged fashion.

Yes, I cried… I cried for reasons of anger, tiredness, frustration, hurt and regret! My words had now left me feeling like the worse parent in the world! Although yes, this was a bad meltdown, I have actually dealt with a thousand others worse! Ones that literally had me pulling chunks of hair from my head in pure frustration…. Why had I lost my cool now, today… This time?

The little man was now deadly silent, I could hear his siblings giggling as they jumped up and down on the trampoline. I knew little man did wrong and regardless of his Aspergers he needed to learn how to regulate his emotions and therefore control his temper. But I still needed to apologise for what I had said simply because this would be the only thing now on his mind, he would be questioning my reaction without having any consideration to what caused it! His part in it all will mean little because despite the fact my words had hurt him emotionally, he would still never relate the two, and it was my job to remind him of this!

I left him for a while… There would be no point me speaking to him when his in any type of highly emotional, angry state, nothing registers. I sat back on the sofa, picked up my iPhone and sent a tweet announcing my failed moment in parenting. I wasn’t looking for sympathy, I just wanted to tell people what I’d done. I guess I wanted some one to tell me to pull my parenting socks up, but they didn’t…

I got lots of tweets everyone reminding me that despite being a mum to a boy with Aspergers, I was also a human-being with feelings too. Yes, yes… I did know this, yet when your in that situation I’m in, you forget to remind yourself of such a thing! You’re to busy punishing yourself.

I thought about this for awhile before going upstairs to speak to the little man in-order to apologise for my hurtful words while somehow highlighting to him that what he did was wrong too! I also wanted to give him an important reminder on “how his words hurt me in a similar way to how mine hurt him”.

I knocked on the door, he didn’t answer but I could hear him sobbing so with that I open the door and sit on the bed beside him. I told him I’m sorry and explain in the best way I can that my words were those said through anger. I then tried my best to get him to see how his actions leave me and other family members feeling hurt too. I gave him a hug and come back downstairs.

After that I found him a sleep on the bedroom floor… The meltdown did have some benefits, it drains all the excess energy he has. We both hadn’t slept for a few nights and I can only wish that joining him was an option. However with two more little monsters in the garden, it wasn’t!

A few hours had passed, I had made dinner and was now escaping in a bid for this beautifully inviting bubble bath that was all ready and waiting for me. Only it was once I was in the bathroom that I suddenly caught sight of my own reflection. And it was the image above that I saw staring back at me. Yes, it was now clear that I’d walked about the house for the past few hours sporting a style that pretty much resembled that of Kung foo panda!!!

I then did something strange… I got my iPhone and captured that messy reflection of mine before finally sharing it with the world.

Why?

Because although I knew this was one of those days… The type you wish hadn’t come about, I also knew tomorrow would be better!

But there was something else I knew too…

I knew there would be someone else, another child like Little man on the autism spectrum, experiencing a meltdown to one of a similar degree. Another normally “together” mother, who like me suddenly loses it and then kicks her own backside for hours on end all because of such blunder. I knew that somewhere, someplace a mother like me would be stood looking in a mirror with a reflection that tells that of the same story.

It was for these reasons I posted my unhinged mental looking picture. In the hope that one day you would find it, relate to it and smile at it!

Tomorrow is another day, a better brighter day. That much I can promise you.

#Silent Sunday

#HAWMC DAY 26 – Health Tag Line

Challenge 26/30 in the #HAWMC is to create a tag line for your blog or health focus and to ensure it’s catchy.

I’ve already got a blog tag line, “A Boy With Asperger’s – The life of a mum of three one with Aspergers” This is perfectly suitable as it’s an accurate description of my blogs overall focus, it’s about a parents journey of discovery, a type of written documentary if you like. I want it to highlight that I’m a parent of three children all with different personalities, yet have this added focus on Aspergers as to bring some awareness and connect with those who can relate to our family situation.

If I was to create a tag line that solely focused on the health aspect it maybe a tad misleading, after all no two people with Aspergers are the same.

But then this blog isn’t about them, it’s about my son, my boy with aspergers….

So here it is! I could add a million and one adjectives for this tag line but keeping it short and sweet, here’s what I came up with…

A boy with Asperger’s
Unique yet quirky, driven & intelligent, wonderfully different

Post 26/30 in the wego health #HAWMC

Life as a sibling of a child with Cancer

I know first hand what happens to a family when a child is diagnosed with Cancer!

Life crumbles in an ineluctable manner, the world you’re living in changes forever!

You wake each morning to the realisation that this is reality! You’re powerless to make it stop, this frequent perturbing feeling that overcomes you, so powerful, you could vomit.

There’s no warning, you don’t get a say in it, it doesn’t matter that you’re hurting, that it’s causing your family to fall apart all around you… its Cancer, there’s no simple answers, nothing is no longer simple, your inferior to its powers as it goes about damaging all that you love in a pervasive manner.

You see, it’s not easy being 10-years-old, the older sibling of a child infested with Cancer, a 10-year-old filled with befuddlement, yet knows enough to understand the seriousness of the situation just by seeing her father cry!

Life suddenly becomes a waiting game, one minute you’re out playing with your friends, the only worry you have, is what time you need to be in for your tea, next, you’re suddenly worrying whether that thing your mother refers to as “Cancer” will allow your baby sister to live another day.

When my 2-year-old sister was diagnosed as having ‘Acute Myeloblastic Leukaemia’ it was if time stood still, yet those around me continued on with life in the same way they always had. You, your family, are unable to look to the future as your apprehensive at what that future may hold!

Life becomes dark, really dark, regardless of the sun that’s actually shining, your world just remains a shadow of lingering darkness, there’s no longer the sound of laughter throughout the home, just this scary vibe of the unknown. Your mother tries with that false smiley face, she does for your benefit, yet you know inside she’s crying as inside you’re crying too!

I sit by my sisters hospital cot, I take her tiny bruised hand the one covered in sticking medical tape to hold the plastic tube in place, in my head I beg God “Please don’t take her away from me and my family”

She’s so weak, looks so fragile, yet she looks up at me with her big blue tired eyes and still manages to show me her beautiful smile. My whole 10-year-old body is swamped with emotions of both love, sadness and fear, yet I don’t know how to deal with it… I just don’t know!

There are day’s I’d sit on the stairs listening to my mothers sobs, the ones she would let out when she thought no one was around, her heart breaking for her tiny little daughter fighting for her tiny life… as a mother powerless to make it better, I can only imagine how she must have felt.

Relationships broke down between a mother and father, both on the same side, yet both dealing with life’s evil turn in their own way.

With each milestone my sister made, another blow sat waiting. Finally discharged from the hospital, she would all to often be whisked back to what was now her home just a few hours later. A simple cough or sneeze could make her so very poorly, yet I yearn to cuddle her, wrap my arms firmly around her and hold her tight.

A shadow of her once lively self with every beautiful blonde hair no longer upon her tiny head she just braved everything life throw at her! Embarking on a long whining road of Radiotherapy, Chemotherapy, Infections and endless doses of antibiotics, month after month this little girl refused to give in, she just kept on going.

That beautiful 2-year-old toddler is now a beautiful 22-year-old woman with her own beautiful 2-year-old blonde blue-eyed daughter!

This journey may have started some 19 years ago but I’ll never forget what its like to be part of a family where a child has Cancer, a life threatening illness that took ahold of them so suddenly… I never thought my story would end like this, I honestly thought that my little sister would fly off & play with the angels, yet here I am telling you this, sharing this ending that I will forever and ever be thankful for.

My younger brother ‘Joseph’ (then 7, now 26) with my little sister ‘Rachel’ shortly before diagnosis

I was inspired to write this post to share my experiences of being a sibling to a child with Cancer, by the lovely Nickie O’Hara, who blogs over on the blog Typecast. Nicky is a mother who can relate to my own, therefore doing a wonderful job in helping the “CLIC Sargent” (a charity supporting children with Cancer) to raise awareness of its Yummy Mummy week which commences on the 10th-18th March 2012.Click here for info on Yummy mummy week

By posting a selection of blogging prompts over a 4 week period, Nickie hopes to get us as all joining in and doing something yummy, by choosing a prompt, blogging about it and linking up on a Thursday… This is week two and I was inspired by the prompt “ Yummy post: What happens to a family when a child is diagnosed with Cancer? How do Siblings, parents cope?”

To check out the other prompts, gain more information on the awareness campaign or the Yummy mummy week, visit Nickie over on Typecast where you’re also be able to read many more post supporting this worthy cause.

Related articles

• Clic Sargent and the Yummy Mummys (ghostwritermummy.wordpress.com)
• Yummy Mummy Writing prompts week one! (ghostwritermummy.wordpress.com)
• What my family mean to me #dosomethingyummy (northernmum.wordpress.com)
• When a Child Has Cancer (everydayhealth.com)
• Neuroblastoma – Toddler Lilly MacGlashan riddled with cancer tumours now in remission after pioneering treatment in U.S (dailymail.co.uk)

As easy as child’s play

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Play, A god given right for all children!

 Its importance is critical to the development of every child regardless of, Class, age, race, gender or ability!

 With every game of peek a boo, every story told and building block added to a carefully constructed tower, your child learns something new & exciting.

 A child may not speak or be able to hear, he may not walk, they may be even confined to a wheelchair, nonetheless this doesn’t mean the child will benefit from play any-less, regardless of a child’s disability, they should be encouraged in play, and will enjoy it like any other child.

 As a mother to three children, I really love playing and interacting with my children, whether its make-believe, a board game or something else all together! Though yes, I do admit it’s not always easy to find the time, yet its something I consider important so try to make it a priority (something we engage in a few times a week minimum).

 As most regular readers will know, my eldest son has Aspergers syndrome which forms part of the autism spectrum. At almost 11 years old, Little man was my first-born, when I was at the tender age of 18. I noticed pretty early on in little mans life that his play style was somewhat different from what I considered to be typical play for a child his age.

 My daughter didn’t come into our lives for a further two and a bit years, meaning I had plenty of one on one time with my developing baby. Games such as Peek a Boo or sing alongs didn’t give of that WOW factor for Little man, instead they sent him into a howling frenzy. 

 Regardless of the above I persisted in my quest, a road of discovery, encouraging my child to engage in interactive play. I knew he got enjoyment from playing alone, I didn’t discourage, though I didn’t reframe from interactive play either! I’m convinced this has been of some benefit to my child now his older. 

 Play helps feed a child’s imagination helping it grow, it allows a child to use creativity while helping them to connect to their surroundings and adapt play to their environment. I believe that play can help a child learn certain roles and requirements while aiding the development of dexterity, physical, cognitive strength.

When your child is on the autism spectrum, play may not be what you typically expect it to be!

 Yes, I learnt the hard way, don’t we all? 

 I learnt that my child didn’t actually require all the latest toys that the boy next door was playing with. My expectations both before and after Little man was born were unrealistic, I had naively assumed that all children played the same way! Play was play, nothing more, nothing less, It all amounted to the same thing! God I had a shock awaiting me and a hell of a lot to learn.

I had no intention on lying to my friends and family when I announced that Little man loved Bob the builder only to end up with a house full of Bob merchandise come Christmas! In some respects I think I half convinced myself it was the case, well he had at least glanced in the direction of the tool kit I had brought him!  It wasn’t just Bob the builder, I was a mother moving with the times & quite honestly the latest craze that I quite often learnt about from the gloating neighbour who would quite often proudly inform me about the latest Spiderman bike her son was now whizzing around on! The next week Little man would have that very same bike, though it remained in the cupboard by the front door only ever seeing the light of day once, twice if you include the day I awkwardly tried to get it home on the bus. This was one of hundreds of toys that were both a waste of time and yes money!

 Looking back as I write this I get a glimpse of how bloody crazy I was! Yes, total denial sweep through me.

 It was only once I had taken a few steps back and observed the situation that both myself and especially little man began to benefit.

 I note… No, Little man did not like playing with Cars (though he quite does today) he did however love spinning the wheels over and over again! I decided that actually that was OK.

 I note… No, Little man did not love Bob the builder (though I only wish I had kept all that merchandise as my youngest is Bob gaga) though he did love Thomas the tank. I decided again, that was fine!

  I discovered that between the ages of 2 and 7 Little man only ever really played with train sets and transport mats despite his bedroom now looking like the Disney store!

 Finally I excepted this!

 I stopped focusing on that Little boy next door, therefore letting go of that, “My child should be playing with that toy” scenario! I focused on the Little man instead and what I saw was no longer what I felt I needed to see through my own stereotypical rigidness, I now saw Little man for the child he actually was! I successfully learnt my first very valuable lesson about play! 

 “Play is unique there is no right or wrong way of doing it”! 

 By stepping into Little man’s world while taking small steps to engage with him in this child lead play I noticed he slowly became more interactive, wanting me to take an interest in his games. 

 Yes, all along I just needed to go with the flow (so to speak) I needed to embrace and celebrate his interest, a massive milestone

 Oh, and did I mention that big credit should be given to my wonderful daughter? Siblings can actually be a massive source of learning  for the child on the spectrum, Alice-Sara certainly was!

 Alice-Sara was that child who played like I also assumed all children did! She played the way I always expected the Little guy would!

 Through sheer willingness and determination his younger sibling did something wonderful without really knowing it! She introduced her older brother to role-play! She taught him the value of this type of play and helped him develop the tools needed to engage in it!

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 It is this aspect of play that I firmly believe is the true instrument needed for a child with Aspergers to progress.

 I don’t know if Alice-Sara just longed for this type of interactive play from her older brother, but as a small child she fought to get it, and she did!

 OK, it isn’t perfect, as much as he is able to engage in such play it is still largely ritualistic and he can become overly controlling often using his younger sibling as a play object, yet his come a long way!

 However ritualistic and Un-spontaneous his play maybe, his sister has successfully taught him how to play schools (a game he still plays today, though it always involves a school “bus”) he also loves playing shop keepers and hospitals (if his the ambulance driver of course)! 

This variety of play offers so much to the child on the spectrum. The child will learn important social interaction skills, and a number of other important life skills they will acquire in life. 

 I’ve seen my Little man go from the child who really did prefer the box as opposed to the toy that came in it at Christmas (mainly due to what I was giving him) to a child who now enjoys play so much more and through he still does it alone, he is much more willing to play with his peers even if they don’t always oblige to him joining in. 

 Yes, he still has them “odd” items on his Birthday and Christmas wish list; Batteries padlocks, neon electric fly zapping lights; and 20 cans of DR pepper to name a few; yet he also loves, computers, lego, model buses and trains, bikes, scooters, board games and magic tricks. 

 Recently I saw a worrying statement 

“As easy as child’s play don’t apply to children with autism”

 “That is bum fluff!”

 “Just because it isn’t typical doesn’t mean it isn’t magical!” 

I learnt that the hard way, I hope you don’t!

Just a Little girl (part one)

A smiley little eight year old girl with golden blonde locks in pig-tails could be seen darting about in the summers evening sunshine with all her friends. Her eyes were so big and so blue, her massive smile lit her whole face causing her eyes to twinkle, her laughter, it was electrifying , her giggles infectious. She had many friends on the street in which she played and lived along with her Mother, Grandmother, Little brother and baby sister. She was truly loved by all, such a care free, happy child. 

 But once all the children had been called in for tea, bath and then bed, the Little girl could no longer hear the giggling happy voices of her wonderful friends, but that of her own thoughts, the ones she felt convinced would drive her insane.

 At bedtimes she would pretend to sleep but wait anxiously for her mother to go to bed just so she could finally do what needed to be done. Her mother would sometimes stay up far to late, but more than not the little girl battled her bodies urge to sleep, It had to be done, or she would be punished, Yes, she would be punished by God.

 Finally she would hear her mothers footsteps coming up the stairs, first she would go to the toilet, followed by the bathroom to wash her hands, face and brush her teeth, finally the bedroom door would click shut and the little girl would wait a few minutes allowing her mother time to fall into a peaceful sleep, then…..

 On her little tip toes, and ever so quietly the little girl would creep down the very creaky old wooden stairs, first stop, ” The living room”  

 Right… Ashtrays first, next plugs and sockets. With her little fingers crossed she would count,” 123, 123, 123, quickly uncross her fingers, then crossing them again she counted 123, 123, 123! Six sets of 123 but if added together they made the number eighteen! She didn’t do it once or even twice but six times, six times for each and every plug socket in the living room, kitchen and hall way. 

What in the hell was this little girl counting for, and in this strange way at such a ghastly hour?

Its like I’ve said, she was counting plug sockets! Is it that hard to understand?

 Some items in the little girls house needed to remain plugged in, the freezer for one! This bothered the Little girl she needed to sleep, how could she sleep knowing the freezer was left plugged in? What if their was a fire? It would be all her fault! Ignoring the urge and the thoughts that bombarded her head she sneaked back up to her bed. “Did I check that the gas rings on the cooker where turned off ?” she asked herself! She knew her Grandmother always made sure she turned the cooker off and she was almost certain she had checked it and counted it just as she had with all the plugs and plug sockets and that of the ashtrays. What if she was wrong and the cooker blow the house to pieces! It would be all her fault she would kill her family! It was far to much for an eight year old to deal with so for the second time that night she quietly made her way back down the stairs but didn’t just check the cooker, she rechecked everything in the same way she had before.

 Some nights the little girl did this some eight times or more. Sometimes she woke her mother or was unable to face the fight with that of her own mind so she would unplug the freezer, much to her mothers horror!

 When that little eight year old girl crawled back into bed so tired she could hardly keep her little eyelids open she would force herself to pray to god, asking that he kept a long list of family and friends safe! To end her prayer she crossed her little fingers and counted in the same way she always did. Yes, sometimes the little girl did this six times, other times she thankfully feel asleep on the first attempt (Thank goodness).

 This all started when the little girl was just seven years old, when she first see the TV advert,”Wake up get a smoke alarm!” She had the images of that brown Leather Chesterfield sofa turning into an inferno of black smoke and bight red flames when the cigaret fell from the ashtray! She had the images permanently imprinted in her mind. How could she ever forget what she had seen fore the little girl was sat on that very same sofa! 

 It was just an advert on the TV right! But that Sofa was the same design, even the same colour… Did that mean the same thing would happen!

 Life went on quite normally around her. Days, months and years passed in a haze and when that Little girl was ten years old her world changed for ever. 

 “Where’s mum and Rachel”  asked the little girl when she found herself at her mothers friends house alongside her little brother. Rachel her little sister was now two and a half. She hadn’t been well lately and that worried the Little girl. She was told her mother would be back soon, but she had a horrible feeling. Then sat on the stairs she heard her mummy’s friend crying, she was on the floor crying.

 Some days later the little girls mummy told her that her baby sister would need to stay at the hospital as she was quite sick. No one said how sick! Yet neighbours and friends knocked on her door and brought flowers, people visited and hugged mummy as she cried. I’m sorry was the words she always heard. Her daddy who just stayed over at weekends seemed to be staying more often, everything was suddenly different and confusing.

But the Little girl wasn’t stupid! This Little girl was wiser than most ten year olds, she knew this was bad. 

 Her mother wasn’t at home much anyone and her grandmother and sometimes father looked after her. It felt like a life-time when finally her mother told her she could visit her little sister.

 As she sat with her mother and brother she took in her mothers words, trying to make sense of it all! “Rachel’s very sick and because she’s very sick she has been given special medicine to make her better. The medicine is very strong and this makes some peoples hair fall out.” Her mother struggled to get her words out… The little girl asked, “Mum, has Rachel had the medicine, has Rachel got no hair?” The mother who was trying so hard to hold back her tears, shook her head, “No, she doesn’t Claire”  

 That’s right, the little girl was me! My baby sister had cancer (Leukaemia, known as cancer of the blood) and my mother was the bravest mother in the world.

 I remember looking at the little toddler playing in the hospital cot in a side room at the hospital, I remember the look of fear in my mothers eyes every-time the doctors came to speak with her, my father stood at the window weeping, the sounds of her screams with the needles and injections that she soon become accustomed to!

 I had OCD, through at the time it had no name, it was just normality to me!

I was ashamed and hid this somewhat oddness that was now a massive part of my life and would be for some year to come.

 When my sister became ill my own life was turned upside down forever! We were not a religious family yet I’d prayed for the safety off those I loved since I was seven years old. I had tried to protect them but I must have failed. Only now a woman with my own children, I know it was at this time I took my OCD to a whole new level.

 This story can’t be told in one post so I have decided to tell it in two maybe three parts. My reasons for sharing this is to give you an insight into the real me. We all know I’m a mother of three, one with a diagnosis of Aspergers Syndrome, but I want to show that although I’m not on the spectrum there are many demons that my son faces and I not so strangely can relate too. I’ve had my own difficulties held against me by Little man’s old school… Many tried to question my own past health issues for those behind my sons. But I’m not ashamed of the child I was and the mother I am today. I just want to show that with in this story. Please if you have enjoyed part one then look out for part two to find out what happens next.  

I’m a mum get me out of here!

 So… a whole week has passed since the children broke up from school! There’s been sleep-overs, trips to the park, sunny days in the garden, days out, lots of play & craft making, cup cake baking, water fights and lastly, “Arguing” Yes, you heard me right, “Arguing” Big fat smelly arguments! Little man and his sister have driven me loopy with their constant, “Mum… tell him to get OUT my room” & “Mum… Tell he to stop looking at me!” Honestly I’m on the verge of a school holiday breakdown here people!

 Little man has spent more time at home these past few years then he likely has in school (thank goodness that’s all changed now that his in a school that can cater for his needs)! But to have the two of them home together is nothing other than extremely hard work! This is simply down to the constant bickering and lately physical fighting between the two of them. We went through a stage before where Little Man constantly hit his little sister which resulted in me seeking professional advice. It was a stressful time, what with the worry that my daughter was somehow getting used to such treatment from here brother, associating it with the “Norm” she just kind of excepted that this was the way things were! Of course I wasn’t happy with this, I wanted him to understand that it’s not OK to hit your little sister every time she makes you angry, nor did I want her to think It was OK for him or anybody else for that matter, to hit her! In the end I was left with no choice put to get out mummy’s big guns and call in an expert! No…. Not super-nanny, but a very nice lady who worked for the ‘Autism Outreach’ for our area, came to speak with Alice while kindly sharing some much needed ideas with myself on reducing the little guys violent outbursts. This wasn’t yesterday, but a good year and a half ago, so were talking some time here, meaning a lot has happened since. Alice has changed a lot in them eighteen months or so. She’s grown up a great deal (I’m not just referring to her mental state here, she’s actually grown quite a bit taller too). however this means that she’s more inclined to do the “Hit big brother & run for my life act” I’m not suggesting he hasn’t maybe hit her first, (which is very often the case) but… this only results in complete and utter madness descending throughout this already chaotic, crazy place we like to call home! I end up having to set chase after little man as he angrily throws himself up the stairs in this high speed chase in an angry desperate attempt to gain that all important last hit. You can bet your life on it she’s shouting a mouthful of insults and abuse at her angry sibling throughout her sprint to her room! Once at her destination, she will slam the door shut and then suddenly out of nowhere she very quickly acquires super human powers that mainly consist of strength! She uses such powers to push her chest of draws and whatever else is in arms length, in-front of  her door. It’s her one attempt to keep out a very angry Little man, who by now has gained his own super human powers, displayed in the way of fly kicks that are aimed at her poor bedroom door!

 I know Many can relate, parents all over the world get this everyday! Yet it’s that little bit more frustrating when one of your children is on the autism spectrum because it makes things that little bit more “dramatic”. Little man can carry on & on for hours. He has been known not to get them little clues us mothers give off while pulling that face, “You know the one! The angry mummy face that indicates, I’ve really had a bloody enough now!” You shake your head in an over exaggerated way while stating aloud, “Carry on kids, #*%*#* carry on!” When your child is on the spectrum they see that red face & head-shaking motion and it means nothing to them at all! If they hear the words, “Carry on kids, carry on!” their up them stairs quicker then you can blink! When asked what they think they are doing? Your given an answer that sounds like sarcasm, “Umm, I’m running back up stairs to hit my sister!” You re-phase asking, “Why are you running back upstairs to hit your sister?” They will answer, “You told me to carry on, carry on!” 

 We’re lucky that over the course of time and given this mum has pulled such a face  a million times, resulting the same tired explanation for my actions…  He now gets it, he finally understands the unwritten rules that surround my body language and sarcastic tone when I state “Argggh… CARRY ON KIDS, CARRY ON.” (Swearing is only for extreme cases when it accidently pops out!)

 Saying this, there are some things little man just doesn’t get, an example would be, “Why you wearing that mum? It makes you look like you have a fat belly!” Me, “Oh, Thanks son”  Little man, “My pleasure mum!” Of course that wasn’t quite the response I was hoping for! It’s for this reason I try to adjust my language, avoiding ambiguous language whenever I can. Though this isn’t easy you know! It’s actually quit amazing how often a person will use metaphors without really actually realising it! I guess it’s become second nature to most, myself included! I swear, if you try reducing your use of metaphors down to zero, you’ll see that these seemingly stupid little phases, such as, “Pot calling Kettle black” or “Raining cats & dogs” make up a good 50% of the English language (Well, in my case it did)!

 Still… despite some sibling scuffles, a little attitude from my daughter who’s eight going on eighteen, and some bad language from the Little dude, things are going OK! 

 Little man is coping well without his very structured school routine. His been attending his new school following this routine a little over a month now and having only just adjusted to it, it’s now gone for a period of six long weeks, just like that! I’ve done my best to make sure I’m not allowing the little guy to spend his days sleeping till 2 p.m. in the afternoon, despite him having not fallen asleep till at-least 3 a.m most nights! Yes, it’s a bit of a struggle, I won’t lie when I say, “Some days I’m tempted to leave him to sleep the sunny day away!” After all his not easy to wake! As many may know from previous post, Little man normally, I’ll say 98% of the time, wakes up in a mood so bad it puts my monthly PMT rants to shame. The big plan has been to get him up early so he doesn’t find this already challenging task any harder when returning to school in September! I swear even those nights his in bed early, (very rarely) he still converts into some kind of morning demon that I’m ashamed to admit, “Scares the crap out off me!” Mother I do apologise if I was ever this unpleasant to wake, honestly, I wish my morning battles on no one, not even that of my worst enemy (though I don’t have one, but that’s beside the point)!

 As for the bedtime routine… THERE ISN’T ONE! I cannot blame the school holidays for this, it’s been a problem on and off since he could walk. Little man will begin to follow a good bedtime routine, then at the drop of a hat it’s vanished and things get frustrating for all! These past six months or more have been no exception. It took me forever to get Little man comfortably sleeping in his own room without making nightly trips into mine. He takes Melatonin, but its effects just seem to have disappeared. For this reason, we often take breaks between doses, sometimes on a weekend or through the holidays so its effects are more apparent when restarted! However, In all truthfulness these effects begin to fade in a matter of days anyway so I’m starting to wonder, “What’s the point?” As for the trips to mum’s room these have again become nightly. His not coming and getting in my bed. I’ve explained that his now far to old to do this, he just drags his duvet and throws himself on the rug! Why has it started again? I think it has something to do with a car accident that happened a while back, it took place right outside his window! The car made the loudest screech as it skid onto the wrong side of the road at high speeds (so fast one of the wheels came flying off and into our garden) luckily, despite it being a busy main road, it was the early hours of the morning converting it into something resembling a ghost town! The car itself, ended up missing our front path, flying through the neighbours bush, finally jamming itself into what used to resemble a front gate and a brick way! The noise was horrendous, waking him from his sleep it terrified him. Since then I’ve been greeted with him and his duvet almost every night and I’m at a loss of what to do.

 On a high note, we have some pretty awesome plans for the rest of the holidays. A fellow blogger has organised for us to receive tickets for the big dip, (open air swimming pool and fake man made beach minus the sea) located on good old ‘Clapham Common.’ She was so sweet explaining about our family situation to one of the organisers resulting in them sending us out a VIP pass to avoid the queues and crowds (see, some people really do care)! 

 We’re also planing a day out with some of the members of my Facebook page (other parents and their children on the spectrum). We are attending the Wilderness festival in Oxfordshire where we will be camping over the weekend (fabulous prize I won on the the fantastic blog “Not Supermum”).  I’ve never camped, nether have the children I’m relying heavily on my friend who is coming along too. My youngest who is just 20 months old will be staying with his daddy as I think it would be a bit much for him and it’s a long way to drive him back if he fails to settle in a “Tent” We will also be making a family trip to Legoland during the last week of the holidays and we’re staying down at the coast for three or four nights at a friends empty flat (when I say empty I mean, there is no one currently living there. It is furnished). The fact itself is located across from the beach, so its over looking the sea. 

 As much as I love my children I have at times avoided taking the two eldest out together! This results in double the days out and double the expense. I know its no way to live but seriously, there have been times I’ve quite literally pulled my hair out during a day out with them both. The last few hours of the Pandamonium festival at the beginning of the month was one of those days! So… I think I’m being extremely brave with the camping idea among others! 

 Another day out I’m extremely excited about will take play in just fours days (5th August) when myself and my youngest along with and my sister and her daughter (who is 10 weeks younger than Harley) will be going on our big day out to the Lollibop Festival in Regents Park London (a three day long event). Little man is too old and Alice is out with a friend plus this is my way of making it up to Harley for not attending the camping trip. This means I will only have one child to chase around once his set loose form his buggy. I can’t wait, his going to love it! With Cbeebies presenters, The Zingzillas, Waybuloo, Charlie and Lola, plus appearances from his favourite characters, “George pig” and Bob the builder” Its going to make his year. There will be lots to do and see, and I myself can’t wait for  Baby loves Disco, Yer… We’re gonna swing our pants and Huggies pull ups during this festival which has been especially created for weeny boppers. If u fancy checking it out have a look on their website and maybe I’ll see you there.

 So… As you can see, we have an eventful summer ahead. Here’s praying (Quite literally) that all runs smoothly, resulting in a fun but relaxed August! With my head now saying, “Yer, right… Dream On Claire!” I’m making it my mission to make it a  success! Now watch this space! 

A fresh start

It’s 3-Am the early hours of Thursday morning, Little man is running around the house like some headless loud chicken on pro-plus and redbull. 

“Come on, you really have to settle down now! You know you start your new school tomorrow, don’t you think you should get some rest”? This was me, trying to unsuccessfully reason with my ten-year old little man! He seems more lively than ever despite the 8 mg of Melatonin he had an hour before! 

It’s the night before the big event! This is quite possibly the biggest event in little man’s life to date, for the morning will bring with it a new beginning, a chance to start a fresh! Don’t all children deserve this? 

Over the course of a few months I watched my child lose every last stripe of his self-esteem. I watched him being gradually excluded from everything he had learnt to love, socially isolated from the friends it had taken far to long for him to make! I battled a system that took every last inch of my strength to break, the endless meetings, the tears from both myself and my child. I listened to the professionals each one slowly giving up on him, the constant calls to collect him as he was said to have been a danger to himself and others, maybe he didn’t fit in with the daily activities planed for the day. I went to court where I found myself prosecuted for my child’s school refusal, not once but twice. I watched him cry, hit his head and ask god why? When my child stated, “I just want to be normal” I cried and continued to cry for nights, days, weeks even months after. I was scared for my sons future, for what lay ahead. I felt lost, wanting to remove my child from the school I felt was truly damaging him, the school that taught him in isolation like some mass murder. I battled for a statement, I got one, then battled for the appropriate amendments to be made! I got brave filing a claim for discrimination and getting the result we wanted although knowing this already tough relationship would now get tougher. Finally I removed my child from the educational setting that was so, so wrong for him, and watched the slow improvements as he was taught 1-1 for five hours a day at the local library by a great tutor supplied by the LEA. I found a school, an independent special school, solely for children with autism! Yet the Lea were not about to hand it to me on a plate and only after every single state maintained special school failed to offer him a place did they finally give in, agreeing to his placement at my preferred school. Little Man had spent the last six months out off school, prior to this, for the period of a year or more Little man was either home on exclusion, educated at school for the period of just three hours per day given in an isolated environment, spending the afternoons at home where he was home schooled. Now he would take the steps needed to make a slow transition to his new learning environment with the help of his tutor, his now best friend! 

This was a big deal for him, I understood that! It’s a big deal for me too! His excitement was electrifying, yet his anxiety was closely hovering by! Little man is wide-eyed at 3-Am almost every night, So this night wasn’t any different! However his this degree of hyperactivity was at a high and risky level, one I hadn’t seen in a while.  

It was something past 4-Am before little man finally gave in, surrendering to his bodies cry for sleep. I tried hard to stay awake, the fear I would somehow sleep through the alarm having fallen asleep so late was within me! Though I gave it all I had but was defeated, just as Little man was an hour before. 

What seemed like five minutes later (God I hate that) I was rudely but thankfully awoken by the horrid buzz of the alarm clock. Rubbing my eyes and seriously struggling to see a thing I faintly made out the numbers on the alarm establishing that it was 7-Am. I could have so easily closed my eyes, reasoning with myself that five minutes extra would do no harm, that I somehow would be able to remain in touch with my head that would remind me that I needed to get outta bed. But I didn’t… Though I have in the past, I made myself get out of that bed and get on with it. 

Waking the little man was like waking an angry dinosaur that or an over hormonal teenager (at ten, this isn’t great… meaning I would preferably go with the dinosaur right now) He angrily gave me an unwelcome gesture of his middle finger then so kindly asked me to @%** Off! I persisted in-till I had movement. Up he got with an awful load of abuse in toll . This little guy had only been a sleep a total of three hours and of course he was filled with both the fear and excitement about the new school . I tried not to escalate the situation and let him dress at his own slow pace. Eventually I was greeted with a somewhat more pleasant child, who sat next to me and said, “Mum, I’m terrified”  Holding on to his hand, I told him it was gonna be Ok! But if the truth be told… I was terrified too!

I would not be joining him for his first morning, It was decided that he should instead start the transition process with the help and support of his tutor. He would only go till 12 p.m. slowly working his way up to full-time. His tutor would go with him for the first two days to settle him before his contract to teach Little man would reach an end. (This was going to be hard) The taxi came and the escort came to the door. Little man walked out to greet her, I shouted that I loved him, to relax, enjoy it, to have some fun. His reply, “I love you too mum” His eyes were so tired and filled with fear, yet I knew he was also excited. I was incredibly proud at that moment… I could have exploded with pride, for after all his been through he was now taking this giant step into the unknown. The morning dragged I sat by the phone on tender hooks, ten, then eleven o’clock no call. I just wasn’t used to this! 12.30 I heard the knock, I ran down the stairs like sonic the hedgehog and flange open the door. There he was, my little man and his tutor. 

Indoors, feed and settled, (this has to be done before probing begins) I asked… “Well, what was it like?” To which he replied. “It was the best mum. I even made a friend! Oh guess what? He has aspergers just like me”  It was then I realised that the tears & the battles had finally amounted to something. I’m not stating they were all worth it, just that for once they lead to something positive. This time I cried the tears of happiness! 

 It’s early days yet, but for once I’m opting out of my usual pessimist attitude and holding on to the hope that this is really it…

A fresh start!

From the heart of an eight year old

Today’s post is a very special one!

Yes, it really is! Today is the day I write and publish a very special interview, one I’ve contemplated writing for sometime now.

I wanted to raise some awareness, not only for children on the autism spectrum, but those children closely related to them.

Well, you can’t get much closer then a sibling, well maybe if that sibling happens to be a twin! But a sibling is the closest I’ve got  (no twins in this house)

My daughter is a very outspoken little lady, she’s eight and like many little girls her age, she’s sometimes a bit big for her own boots.

Still I have no complaints, my little girls a treasure, a real joy to be around (99% of the time) But as I’ve written In a very recent post, these siblings fight like cat and dog.

Little Man and his sister couldn’t be more different! Yes I love them both the same, just as I do my youngest, ‘The walking home-wrecker’, “No, his two young to be a ‘marriage wrecker’ but he is an eighteen month old vandal who I’m considering awarding an ASBO!” Of course I’m joking, then again ask me that when his feeding the DVD player ‘Whootis’ and watering the plants with fruit juice.

My point is, “IF I EVER QUESTION LITTLE MAN’S DIAGNOSIS BY ASKING MYSELF DID THEY GET IT WRONG?” I just look at the differences in the way my two eldest children interact, play or socialise. This corrects my way of thinking almost immediately, even when things do seem relatively ‘normal’ and the questioning sets in there is always something around the corner to point it out.

Well, as usual I’ve done enough rabbeting for one post! So, with that I will now introduce an even bigger chatter box, ‘Miss Alice-Sara’

AFTER WHAT SEEMS A LONG WAIT SHE COME’S FLYING THROUGH THE DOOR LIKE A WEST-END THEATER STAR!

Umm… As I expected, she’s dancing around, flicking her hair and striking a pose. A gentle reminder from mum ( yes, that’s me) reminds her this isn’t television.

Mum: So,  if your finished giggling Ally would you like to start?

Alice-Sara: I’m finished, just one last *giggle* That’s better! What you waiting for mummy?

Mum: *cough, cough* shake head, ready now are you Ally? Right… Can you please tell me what your name is, how old you are and what school you go to?

Alice-Sara: Well, My name is… ‘Alice’, I’m 8 years old and I go to XXXXXX Primary school.

Mum: Very good! So Alice! Can you please tell everyone a little bit about your family Alice!

Alice-Sara: what like who they are and that?

Mum: Well, who do you live with, do you have brothers or sisters? Remember the readers don’t know you, just me!

Alice-Sara:  Oh, I thought so! Ok, I have no sisters (rolls eyes, sticks up bottom lip and crosses arms). I have two brothers! A baby brother and a big brother, who is sometimes really bad! Well, most of the time actually! Oh, I’ve got a kitten, well, we have two kittens but ones my brothers, and guess what they were really scared but now they are getting used to us.

YES, ONE VERY EXCITED LITTLE GIRL WHEN IT COMES TO THE NEW ADDITIONS TO OUR FAMILY!

Mum: That’s really great Ally! So, do you remember why mummy asked you to do this special interview today?

Alice-Sara: Yep,  Sure do mum! It’s so I can tell everyone what it’s like to have a brother with Aspergers!

Mum: Yes that’s right! Do you know what Asperger’s is? Should mummy explain it first (Not like I expected her to agree)

Alice-Sara: No, no… I can explain myself! Well, Aspergers is something that makes you a little bit different, no I mean a lot. He can be very naughty for sure! It means you like buses, or something else like buses, you like it a lot a lot, and that’s what you like to play all the time….., Isn’t it Mum!

Mum: Yes, I see what you mean! Little man has a special interest in buses! That’s right Alice! So, anything else you want to add or are you finished?

Alice-Sara: Umm… Your brain is a bit different I think, and you do things in a different way (looks my way for clarification, to which I give a gentle nod) Oh, You can cry if someone is just looking at you, can’t you mum! My brother hits me if I look at him, he says I’m pulling faces!

Mum: Does he hit you a lot?

Alice-Sara: Err Yer Mum, you joking? You know he does! I sometimes get so angry that I want to burst open… I say things I don’t mean sometimes, like… I wish you wasn’t part of our family! But he always says horrible things to me.

Mum: Like what?

Alice-Sara: Well, I don’t want to swear mum, or am I allowed to so that I can tell you?

Mum:  No…. I’m sure there’s other names he calls you that don’t require any swearing! (though I’m struggling with that one myself)

Alice-Sara: I know! He sometimes calls me butt head and fat!

Mum: You know your not fat though Alice don’t you?

Alice-Sara: Umm… Yes…., but I’m not a butt head either you know!

Mum: I know your not! (Flash her a smile and she gives me a quick hug) So, what’s it like at home? Do you play with your brother?

Alice-Sara: Not so much anymore. We always have to play school’s but he would always be the teacher (she is really exaggerating her voice). He just shouts the same thing all the time, like, “SHUT UP AND DO WORK, YOU’RE NO GOOD! NOW GET OUT MY SCHOOL”  That’s not the only way I showed him how to play schools! (Big shake of the head with hands on hips lol)

Mum: What, you showed him how to play schools?

Alice-Sara: I teach him all my games, but he just bosses me about and always puts a bus in our game somehow, even when I say no”buses allowed!” I’m not allowed to stop playing when I’ve had enough but he just walks away and stops playing half way through a game, “Yer that’s so annoying” Oh, and he don’t say anything, just leaves! He goes of making that noise! (Again roll of the eyes and raises her eyebrows)

Mum: Noise………?

Alice-Sara: Yes, you know mum (she says in a very low voice, almost as if she’s whispering), the noise… he always makes… I will do it quietly because he will go crazy if he hears me, I’m not allowed to like what he likes am I! “Beep, beep ,beep ,beep… but a lot more fast, then he goes sussssh it’s the beeping of the bus doors and the noise they make when they open and close! He loves that! It gives me and mummy a headache sometimes, don’t it mum, don’t it!

Alice-Sara: Oh… Mum, mum, I forgot! He uses strange things to be the front of the bus, *giggle* He uses a spoon or pencil and holds it in-front of his face, Oh, one more thing… he uses mum’s sunglasses as the bus doors (her voice lowers and as she giggles that cheeky giggle she says, “He always breaks your glasses don’t he mum!”)

Mum: Yes, he certainly does Ally!

Mum: Ok, just a few more questions now Alice!

Alice-Sara:  Oh, I’m having fun 🙂

Mum: I’m glad! So, how about school! Does your brother go to your school?

Alice-Sara: Not anymore! He goes to learn at the library and gets to do fun stuff, *Huff* “I wish I could go to school in the library!”

Mum: You wont say that when your bored with no one to play with!

Alice-Sara: Yes I will!

Mum: Alice……

Alice-Sara: OK, OK, maybe not! I do have lots of friends in school! My brother was a little bit bad at school, but sometimes people were horrible to him and that makes him more naughty.

Alice-Sara: I do love him because his my brother! Mum, Is it Ok if I don’t always like him though?

Mum: Of course it is honey, of course!