Little Man finally Has His Birthday!

Yes, his been driving me mad for months. Anymore birthday talk there was a danger my head would explode. But we got there in the end and god how thankful I am that we finally did.

Yesterday my not so little man turned 12 (god I feel old). He woke up early despite sleeping during the silly hours and was beaming with excitement. He doesn’t like unwrapping so he was given his gifts in a bag and his face lite up with the sight of a Playstation 3.

I also brought him the much awaited (so I’m informed) FIFA 13 which I had to Pre-order at our local supermarket. This along with a few other games, an additional controller and some other accessories made up his birthday list.

I was really surprised that he didn’t kick off when the door knocked and it was time to go to school. But given the fact his favourite teacher had also brought him a game probably explains why.

Once home he had friends over and the roars could be heard coming from his bedroom as they all took it in turns to battle the birthday boy at FIFA or Wrestling.

We then had a special dinner of a fry up (yep, not my idea of special but certainly was the little man’s). We then sang happy birthday before tucking into some delicious birthday cake.

Birthdays in our house are often a little odd when it comes to the little man. He normally requests some pretty odd presents and can normally be found playing with his gifts in the strangest of fashions. Whats more he can often be found doing so alone.

This year the occasion was somewhat more “typical” for the birthday of a 12 year old boy. He invited his cousin and the boy next door over to the house to play. He even encouraged his sister to join in (though this didn’t last, it was a good start).

There was no birthday meltdowns to be seen and I for one was feeling pretty relieved that there wasn’t. On the whole the day was perfect.

We did experience one little problem mind you. The whole excitement of the day didn’t wear him out as I would of hoped it would. The little man went to asleep at an alarming 6am this morning (and before you ask his Playstation was not in play during the course of the night). As a result the little man didn’t go into school today. I tried desperately to keep him awake once it was gone 4 am but I failed miserably.

His now awake and won’t be playing his game till after tea (I don’t want him to associate time off school with having fun). We have therefore had some tears this afternoon, but given I’m writing this in a reasonably silent house, here’s hoping we’re past that.

So, that’s another year and another birthday. Don’t be surprised if in 6 months time, you read that the Little man has been banging on about his 13th birthday. Seriously, this starts happening around May so you’ve been warned!

How to approach 5 of the most common difficulties that occur for children on the autism spectrum

How to approach 5 of the most common difficulties that may occur for children on the autism spectrum.

(1) Sleepless nights: Who ever said it was babies that caused you sleepless nights? Whoever you were you lied. Its well documented that children on the autism spectrum have difficulty establishing a bedtime routine, getting to sleep or waking during the small hours.

Now, I don’t have all the answers here, how could I possibly when my child is still awake now at 2.43am! However I have tried things that have had an effect but sadly not for long. Don’t panic every child is different and not every child on the spectrum will have difficulty sleeping. Here’s some tips that have worked for us short term but for others they never stop working.

For those that have difficulty establishing a bedtime routine, consider making a schedule. These can be brought but tend to be costly and can be easy made with some paper, a laminator, some Velcro, brightly coloured pens and some stickers for decorating (I will upload an additional how to post to demonstrate how to do this in the near feature)

The schedule will contain a set of personalised images, e.g… a bed, toothbrush, story book etc… Keep all images in a little pockets attached to the schedule and the child can stick each image on the schedule (with the help of the Velcro) as and when each action is carried out. Many children with autism adapt and even enjoy this independence they just find it hard to do things in sequence without visual prompts. Rember schedules are great for all children with or without autism.

For the Child that can’t settle try story tapes the tone and gentleness of the story teller could well send them off to the land of dreams.

Sensory reasons may restrict your child’s sleep. Weighted blankets, sensory lighting, sleeping away from a window all may help.

Reduce the amount of food and drink your child has one hour or more before bed. Make sure they use the toilet as this combined may avoid your child waking in the night.

(2) Meltdowns: No, these are not the same as tantrums and yes there is normally a reason behind them whether its anxiety, sensory processing difficulties, an inability to express oneself or a lack of understanding.

Those children on the autism spectrum that have meltdowns will often feel completely out of control and are very hard to comfort.

There are times they seem to come from nowhere, yet most of the time a parent will be able to sense one coming (Especially after so many)

There are triggers everywhere and of course these can’t always be avoided, however here’s some tips for certain situations you may find yourself in as a parent to a child on the spectrum.

(a) If your child has sensory sensitivities then be aware of the environment a child is in! You may notice that supermarkets are a prime meltdown hotspot for the sensitive child.

(b) Prepare a weekly schedule, e.g… times, place, events displayed on a visual timetable or planner. Depending on a child’s age you could use pictures or words. This allows the child to know what it is that’s coming next. For a child who is very dominated by a routine, consider making a handheld travel schedule and for those who can afford one, get one on your ipad.

(c) If your child is becoming very confrontational with you, don’t react by arguing back with the child, it will only make the situation worse and will likely carry on much longer.

(d) Be consistent and don’t give in. A child on the autism spectrum can still work out what gets them what they want, which will therefore encourage the behaviour. (I really need to take my own advice here as I’m still having problems with this one).

(e) If safe let your child get it out their system & avoid becoming overpowering.

(3) Anxiety: My own child knows all about anxiety, he drives himself nuts worrying about things that no child should worry about.

Be careful what your child sees on TV. Little man can become very upset, frightened and distressed when hearing something on the news.

Give your child lots of reassurance if they are becoming distressed.

Be careful what types of conversation are taking place in the child presence.

Use social stories as a way to offer the child reassure. When they are fully informed in what will happen, when for example visiting a dentist etc, the anxiety will be reduced.

Speak to your child in a non-ambiguous way, avoiding misconceptions and upset.

(4) Lack of support from external services: You may feel that your child on the autism spectrum is not having their educational or social needs meet. However it is likely that the local authority (LA) will disagree.

Note: In the UK you don’t have to wait for a senior teaching member/SENCO to apply to the local education authority (LEA) for a statutory assessment of your child’s special educational needs as you the parent also have the right to make such a request! However this does depend on whether the child has been assessed in the past and how long ago this was.

If the LEA refuse your request you can make an application to the SEN tribunal.

You should keep letters and documents filed and in-order as you may require these as evidence in the event you need to appeal.

You are your child’s best advocate, if you feel something isn’t right don’t give up on it in-till action is taken.

If able, take video evidence of your child’s behaviour or meltdowns, this can be used when trying to obtain respite, a statement of sen, or even a diagnosis.

When dealing with the LA/LEA or school do so via email aswell as written letter! This will create proof of contact and what was said.

If you believe your child needs more help than they are currently getting then you’re properly right. Trust your instincts.

You have the right to request copies of your child’s educational and medical records. Educational records can contain evidence for a statutory assessment or a statement of special educational needs (SEN). This can be done by using the Freedom of information & Data protection act. School’s will be given 15 days to comply.

(5) Sensory Processing: Children on the autism spectrum are likely to have difficulty with their senses whether the child is over or under sensitive both can create a host of problems.

Here is a few common issues that some children may experience, though it is important to remember that all children are different regardless of their condition. Your child may face all of the examples below where another may face only a few if not any at all.

Tactile defensive: A child who is said to be tactile defensive will have difficulty with the senses relating to touch. This child may not be able to tolerate certain materials (Little man hates raincoats). A child with autism may feel physical pain from wearing certain garments and this may trigger challenging behaviour. If your child refuses to wear certain items of clothing then note down the fibre that is used and avoid these when out clothes shopping.

If your child is expected to wear a school uniform and is sensitive to the texture of the fabrics it is made from, talk to the school to see if there is a way to compromise and maybe find something that is very similar as to avoid your child standing out from his/her peers.

Wear new uniform in just like you would new shoes. Do this for around five or ten minutes per day increasing the time along the way. This can be done during the school holidays

Some children are sensitive to loud noises, others are even sensitive to certain tones and pitches a noise can create, including the way a person sounds when they speak. Be sure to keep your child’s school fully informed of such difficulties so they are aware of triggers, e.g fire alarms, break-time bell , etc.

Try your child with ear defenders and if successful request that your child wears these while in school.

Sensory seekers: Those children who sensory seek may flap, fidget and swing back in their chair at school. This means the child is lacking sensory stimulation, fidget and sensory toys can help.

Make the child’s environment inviting, bedrooms could host a different range of sensory items as well as bold and fun colours being used on textiles and interiors. There are lots of ways to create this type of environment on a budget and I will try to write a post on how to do this sometime in the near feature.

 

Falling Apart

This post is totally extemporaneous! There was no draft, theme nor great idea.

Yet here I am writing, undecided if I’ll even publish this! I guess if you’re reading this then I must have got adventures, that or damn right brave!

You see, right at this very moment I’m apprehensive, somewhat stressed, extremely exhausted and in all earnestness, a little angry. I therefore apologise in-advance for any rambling nonsense that makes no sense to you, like it does to me.

Right now I feel the need to express myself, yet I have this inability to verbalise what it is I need to say. Who it is I need to say it to is beyond me… So, I’ll just write it here instead!

These past few weeks have been crazy, I dunno where my heads at right now! One part of me has been excited about all the great stuff going on, what with the Mad blog awards and the achievement of having been shortlisted in two categories, “Most Inspiring” and the big one “Blogger of the year. Then there’s the fact I’m off to Cybermummy on the 25th thanks to the lovely people at lego duplo! The other part of me resembles that of a total stress head.

I know we all have weeks like these, the not so good ones, but I’m really struggling to get my mind frame as it should be!

Sometimes I read post and comments that relate to myself and the blog… Some write some awesome things, giving me credit for the way I parent and handle life’s challenges. Although these comments uplift me, encourage me and make me smile, I somehow feel a cheat for allowing such presumptions to be made.

Why? I’m no super-mummy, far from it! Sometimes I questions my ability to do this whole mothering lark, but don’t we all at some point? I know I’ve come a long way emotionally in these past few years, I’ve had to! Yet there are them times I feel like I’m running on a treadmill going faster and faster, so fast I can’t keep up. I keep going till suddenly someone presses the button and I fall of! When I’m off, I struggle to get back on.

People need to know the whole me, I’m human though sometimes I feel far from it. I make mistakes and sometimes I wish I had done things differently!

To think that a great deal of you find me and the blog inspiring means more to me then some will ever know. Days such as yesterday I fail to see myself in such a light, especially when I found myself absconding to the safety of my bedroom, closing the door behind me, sinking to the ground and sobbing like a baby! Take last week for an example… Having just attended another independent assessment (OT) with little man (not a great assessment) Little man become anxious when I took a couple of wrong turns getting us a tad lost! A stream of obscenities were thrown my way. They kept coming at me faster and each more shocking than the last… I was stood outside Loui Vuitton on New Bond Street, sobbing into my hands (and this wasn’t over my realisation that the beautiful Loui Vuitton oversized bag in the window would never be apart of my life, though this did make me a little sad) I should have been calming him, ignoring the shocked faces of the appalled public and as I normally would… Got on with it!

It takes a lot to get me on this level, things a lot worse have happened in-which I’ve dealt with in a calmer manner! You take so much, then that one thing just does it, makes you snap… no matter what the magnitude! These are the times I am overcome with guilt and question my ability to manage! I then feel selfish that its me I’m thinking about as opposed to him! Do you know how hard that is?

Wow, seriously I haven’t slept in nights, maybe that’s my reason for this, “I feel so sorry for myself post” Maybe this attempt of a post, will be one I regret! The post you wished you never wrote… We all have them… Don’t we?

I’m not to sure how this post is planning out, what it sounds like! I’ve not read a bit back nor corrected one-off those spelling mistakes I see as its been so kindly underlined in red (cheers Mac) I’m In a zone… and for all I know this could sound like complete and utter, “Shit!” I feel a certain amount of pressure removed from my head, does that mean I’m almost done? All these worries I have manifesting together as to create one huge headache have been difficult to shift. I have struggled to partition each into its own place dealing with each issue one at a time… In actual fact… I feel close to crazy!

Little man has had a grand total of nine explosive meltdowns in a little under a two-week period. These have impacted on the whole family, each one off us getting to grips with it as best we can. Meltdowns have been had for an array of reasons, such as… Stressful OT assessment; the issue of me getting lost on the monopoly board; a line failure on the jubilee line; a broken down bus; late school transport and complete lack of sleep.

These issues may well seem trivial to some, but to little man they are real everyday factors that cause him distress. Can you imagine how hard that must be, the loss all control, the struggle to self regulate your emotions… I wish people would consider such things when staring, judging or worse laughing, this only makes him worse. (Yes, sadly some find it amusing!)

As well as the meltdowns I’m unhappy to report a more worrisome issue! Given Little man’s anxiety and his inability to get much sleep has unfortunately lead to two panic attack. I felt both helpless and guilty at not being able to keep him safe from such horrible attacks. Both occurred in the small hours and when he begged for an ambulance, I almost complied! Being a person who has suffered from these attacks from a very young child… I was able to distinguish  between a medical emergency and anxiety. He felt at ten years old like he was having a heart attack as electric had entered his body and was unable to get out. (It hadn’t bless him.) He paces, opened doors and windows in a desperate attempt to breathe … It took some time but we got through them together!

Sleeping like a baby, I looked at my child laid on my bed now so peaceful. I wondered what I needed to do next? What does the foreseeable future hold for my child? I slide down the bed to the floor cried, not just a bit but more tears than I knew possible… I felt so lost a feeling I haven’t felt for such a long time! I was worried what tomorrow would bring, would he endure the same thing?

Right now I hated the big man In the sky, for my son is just a child, why can’t he be left alone!

All burnt-out!!

So with no school little mans sleep routine has gone bonkers. It’s gotton so bad that were lucky if he sleeps at all during the night… But here’s the problem… His sleeping throughout the day! I’ve tried my damn hardest to keep him awake during the day in-order for him to be tired by the time evening comes back a round. But it’s just not happening! If he is tired and wants to sleep in the day then trying to stop this is a risky operation Abuse and meltdowns are likely as a result. He will often sit swearing while crying (swearing normally directed at me) this means his getting zero work done, as trying to home school a child who’s been up the entire night Is a challenging job for any. But with the baby needing constant attention it’s even harder to conquer.

Well the good news is little man should be working with a tutor hopefully at the local libary ( I can’t see it working out at home, to many distractions) The tuition is for 5 hours a day 5 days a week. So that’s a total of 25 hours which Isn’t a full time education but it’s better then the nothing his receiving at present. I will at least be able to get things done that need doing without the constant worry of having to drag him from his Pitt encourage him to dress in-order to come with me when I need to put some food in the cupboards “Its not great making your ten year old aspie follow you round the supermarket when his howling abuse and throwing himself into the boxes of cocopops because he hasn’t slept the night before and anything and everything is a potential trigger” So for most of this week I’ve just left him to it, if his gonna sleep the day away so be it! He won’t have that choice for much longer! My god his going to be a zombie… I can just see it!

Melatonin is something I’m fast giving up on. It is having little if not any effect on him whatsoever.
Maybe another visit to the doctors is in order! Though I hate the thought of strong meds, I just don’t think we can do this anymore!!

When little man was four years old I once woke to find him cooking some bacon at 4am. “Remember that this is a four year old boy I’m referring to” I swear it was the smell that rose me from my bed. I half sleepingly staggered down the stairs thinking it must be his father who was over for the weekend. I walked into the kicthen… “Bacon Mum?”
The sight that greeted me took me from a half dazed and confused woman to a fully wide awake screaming mother!! He looked at me as to say “what’s the big deal here, it’s just a bit of bacon”

You see I grew up as a child suffering from bad OCD. I concealed it for so long it finally drove me insane and age 12 I ended up in hospital.
I had a loving family and great homelife… But deep in the background, buried in my head was the horrid monster that was OCD. I dealt with it alone for five long years without ever telling a soul and as a child this was a lot to contend with. The OCD first reared it’s ugly head when I was just 7 and it all stemmed from anxiety brought on by the fear I had developed of fire. It was the wake up get a smoke alarm ad on the tellvision that kicked it all off. The advertisment showed a lit cigarette fall from the ashtry onto a brown leather Chesterfield sofa that happen to be the exact model we currently had in our home. I checked my mother’s ashtrays filling them with water to ensure nothing was alight. I counted plug sockets to ensure they were switched off. I couldn’t reason with my own mind… It was ludicrous I know! But your powerless to control the urge. I would end up rechecking 8 times plus a night… So to see my little 4 year old grilling a bit of bacon and the prospect of what could have happened shook me to the core. For a whole year after that episode I found myself counting and checking once more… Like so many times before!

Being a parent naturally means you worry more about the things that could put your children in the danger zone, however I constantly worried to the point I was driving myself la-la!!!

My point is little mans fearlessness became my fear! Inevitable Little mans sleeping problems became my sleeping problems too. He never slept because he didn’t have the natural ability to shut himself off from the world, from his thoughts and interest… I didn’t sleep because I needed to watch my child and ensure his safety along side everyone elses. This had became the norm and continues to be for the forseeable further.

In late 2008 little man started on melatonin, at first it seemed to be working. Ok he still may not sleep till 1-2 am but when your child is able to stay wide eyed for a whole 24 to 48hrs hours at a time you appreciate this huge improvement. I’ve always said 4-5 hours sleep a night is a hell of a lot for my little man. Problem was I had become so used to having to be a night owl that I now had trouble adjusting to this new routine, I would often become overfatigue which isn’t a great place to be! You see once I finally manage to revolve my sleep routine around that off little mans it suddenly changes again and were back to square one.

As a parent of a child with extremely bad sleeping habits there are times I fall to pieces. However I consider myself to be some what a pro by now… Though It’s not easy holding yourself together, trying to stop yourself crying for the most silliest of reasons… There are days I’m a walking emotional wreck and other days a ticking time bomb. I’ve fallen asleep standing up and I swear I once fell asleep walking! I remember when I had my youngest child in December 2009… I would only have to yawn and the stranger next to me would say, “aww is the little darling keeping you up all night” as they glance over into the babys pram. Sometimes I smiled and nodded, other times I’d reply, “No his fine, it’s my 10 year old that keeps me up through out the night!”
The look of pure horror slapped across their faces. Many would preachify & instantly assume it was down to disobedience! I would be offered the ignorant suggestions as if they somehow knew my child,”Take the TV/Games console out off his room” Or even,”Shut his bedroom door and refuse to let him out” Some would refer to him as some kind of rebel out to make his mothers life hell!
If having a child with Aspergers has taught me one thing… It’s not to generalise… As we are all guilty of having done so at some point of our lives!!

My child is a child who walks around beeping and repeating bus destinations… He don’t care if I take his TV away or romove the xbox from his room. I can’t take away his thoughts… I can’t shut those out. If I could remove his thoughts just for the duration of night in order for my little man to catch some zzzz I would! But sadly that isn’t an option.

Some people will never really understand what it’s like to have a child that suffers with insomnia… the way it impacts on the parents and the child… on ones ability to function throughout the day… Those of us that do it everyday learn to adapt and somehow survive and go on having had such little sleep, if anything we get good at it. I’m told some people are designed to need less sleep then others… I suppose that’s the way my little man is designed to be… And though I wasn’t born to be this way, I learnt to be, because I had too!

I’m not under any illusions that there is a magic potion… But I hope that god is on our side and one day this issue will at least ease!

But the one thing I wish for more… is better understanding… When your child is late for school there is no eyebrows raised when You state your child has been awake thoughout the night. That everyone involved in your childs life understands or at least trys to understand the seriousness and significant impact the issue has on the whole family… To speculate and blame is never going to help… No parent needs criticism but understanding

Well… I write this with half open eyes but given it’s not even 9 pm the night is still exceedingly young for me! So for now I wish you all good night and hope that you all get some beautiful shut eye 🙂
Below is an example of my mood as a result of a sleepless night.

You know your a parent to a child with Aspergers when….

Now I know that every child on the spectrum is different and no two children are the same! But I’m guessing there are a good few parents/carers that can relate to one or two of these….

… You know you’re a parent to a child with Aspergers when…

….You’ve watched Thomas the tank engine more times then you’ve watched Eastenders (You love Eastenders!)

You spend more time at your child’s school, then what you ever did your own school!

You know your child’s entire school teaching team on a first name basis and see them more then your own personal friends!

You begin to organise your own day, with the help of visual aids.

You laugh so hard your sides hurt & your eyes water.

Educational Jargon is no longer Jargon, but a second language!!!

You are taken for the ride of your life… A long the 450 bus route!

Who needs a husband, You’ve already got one!

Your idea of an early night is 3am.

The shop assistant thinks you’re the local crazy woman, who strokes and feels up all the clothing in the children’s department.

You can ask your child for their honest opinion… “Does mummy look fat in this dress?” And be given an honest answer! 😦

You find that slowly over time your ten-year old has converted you into an all time classic ‘bus spotter’ I’m stood like a tourist in the coldest of weather trying to gain the prefect shoot of a 194 bus. Just to keep your little man happy!)

Your child beats you hands down on a maths quiz…. Every single time!!!!

Yes, you find it’s them helping you with their homework!

Your addicted to over the counter painkillers, and yet for some reason you still have a headache!

The morning cup of tea is replaced with three shots of espresso, followed by a couple of Redbulls (I’m yet to grow them wings it’s talking about)

Coffee no longer=social chit-chat, but gives you the super mummy powers needed to to go on!

Your smart, but…Your child’s just that little bit smarter!

Your verbally bashed on a daily basis, yet you don’t love them any less.

“Mum’s got eyes in the back of her head” is a metaphor your never, ever going to use again….. Ever!

You find that over time you’ve become a natural at not giving a S**t what people think.

Fighting is no longer something you associate with boxing!

You wish for the ground to swallow you whole, when your child states the health benefits of losing weight to the slightly chubby checkout girl in Tesco.

Your face glows red when a passer-by slips and falls on the snow, and your child stands pointing, laughing and shouting, “Look they fell over… that is so funny mum” (They clearly don’t think so)

Your woken at 3 am because your ten-year old is feeling peckish… Yer right!

Tantrums are a little different from those you read about in the parenting books

Claire’s room station … Is in-fact Claire’s bloody bedroom… Beep- Beep- Beep… OUT!!!!

And lastly……

….. You live and breath your child’s condition, longing for them to be understood,accepted and appreciated for the truly wonderful child that they are….

…. The child you love just the way they are!!

Tad Auty.. A school excursion.

It’s been a while since I featured a guest post on the blog. I decided that I wanted to hear from those who had a deeper insight into the world of autism, but even more so Aspergers! It was a few weeks back when I received a friend request trough Facebook, by Tad Auty. Tad a 40-year-old Australian female who is on the autism spectrum (diagnosed with Aspergers), was also an active member on the Facebook page ABWA. I noticed that this Inspiring, clever lady was dishing out some pretty good advice! Members were gaining a great insight on what life was like for someone on the spectrum. I read a comment that Tad recently made on one of the treads on the group wall. It was started by one of our page admins who wrote about a social situations encountered by her young son who has a diagnosis of AS. Tad’s comment was a real eye opener for many parents reading it, Myself included. So with this I decided to invite her to write the next Guest post. I was delighted when she agreed, and with a topic in hand (School excursion) Tad got to work in producing the following piece.

I hope you enjoy! I know I did 🙂

Claire Louise

The remainder of this post is written by Tad Auty, a 40-year-old mother diagnosed with Aspergers and living in Australia.

I was asked to share with you, how I feel, how I see things…as a hope that it will help to explain how some of your children may feel in certain situations…

I’m a 40 year old female who was diagnosed with Aspergers at 33, after many years of depression and feeling like I was weird, wondering why, if I was good at jigsaw’s, I couldn’t figure out how to “fit in”. Why had I ended up being a divorced mum of 3, when I thought I was going to be a “Ologist” of some sort! (as a kid I went from geologist, to archaeologist, psychologist, anthropologist, theologise….anything with “ologist” interested me) Why was I so clever & strong in many ways, but SO DUMB in others, unable to do simple things that others can. Like be quiet! I had read about autism, (I had read about a lot of psychology as a small child, trying to figure out how I was “supposed to be”) but what I had read about autism, was all about non-verbal people. When I moved in next to Johnny, my eyes were opened.

Johnny was 4-years old when I met him. He wasn’t verbal, he flapped and shrieked and liked lining things up. My children loved Johnny and had a real gift at being able to play with him in a way that didn’t upset Johnny or get into his space too much. I would watch Johnny and was able to predict a lot of the time, what he was about to do. People would say “I wonder why he does that?” and I would reply, “Well I can’t be SURE, but I did that too, and it was because of…..”

Johnny only ate certain shaped and coloured food, and you couldn’t changed brands on him…..I would say “Of course you can’t change brands!!” Johnny would line up blocks and not let others join in. People would say “He wont let you join in”, but after weeks of watching, I worked out his pattern and system! I knew I had to drag the block on the carpet in a perfect straight line, then lift it to my lips and brush it across them, then slide the block back in a straight line along the carpet. I was so nervous when I tried it, as he watched on about to shriek or disengage at any second, but he watched on, and then saw what I did, THOUGHT about messing all the blocks up (as he does when people ruin his rituals), then he paused, looked at me again (like he was saying, “oh she has made such an effort to do it right, I will let her play”) and he went ahead and put his next block in place.

It was because of Johnny I read a (more modern) book written about autism. As I read it, I was thinking “same as me”, “that’s how I feel”, “OH so auty people can talk TOOO much!!”. I had the experience of relating somewhat to books on bipolar/schizophrenia/depression/eating disorders, etc…… But this autism thing, I didn’t just relate somewhat, it was like reading straight from my private thoughts and feelings. If I had to highlight the relevant parts, I may as well have dunked the book into a bucket of pink ink!

That was when I realised what was going on with me…And that I wasn’t alone. That Johnny and I were alike for a reason, (though so many judge him as being low functioning, because he is more disconnected from the world of people than I am, I do not like the high/low functioning label, as I think it’s a value judgement. If our society was different, and didn’t expect people to all be the same, Johnny would be valued EVEN if he just wants to line up blocks and sit on a hill in the wind in a breeze! He is functioning quite well in his own way, and is a happy person most of the time:-)

I went off to see a Psychologist who specialises in autism, and was diagnosed not long after. Life has been a lot better since. I still have the same brain, but I understand how it works now. I understand more now how NTs work too. I have learnt how to realise what “feelings” are and talk about them when required. And though I still have struggles with feeling disconnected socially/emotionally or frustrated with my neurones at times, I know now that I’m not a lone alien. I still feel like I’m from another planet, but it’s Ok, because there are heaps more of us here, and now I know that, I see them everywhere.

I thank fate/nature/God for introducing me to Johnny….and all of the advocating I do, I do for Johnny! Because he cannot speak for himself, and though I’m not him, I do empathise with him and his mum and dad….and all the other Johnny’s (and Sally’s) and their parents. I feel pretty useless at a lot of things, but words are my thing, and finally my private world, and my words, can actually connect me to people, help others feel less isolated, and likewise, I am less isolated, from meeting so many other great people who have felt this way too.

I decided to choose a memory from my teen years to share with you…
Something so simple to many people…. A school excursion, Something the other kids at school looked forward to.

When I started in year 7 (aged 12), I was a “mature, well-read, little lady”. (So one teacher said in my school report…. Gee I had her fooled) I drifted about school, had a few “friends” (I defined friends as “people who tolerate me”) who I sat near and tried to say the same things as. Outside of school I was a free child….I was more relaxed….I was a lot
happier around older people and my little boy friend from down the road. I didn’t have to pretend to be normal around the people at home. I was accepted as I was.

School was another thing though. Being a female meant I had to hang out with girls at school. There was too much negative attention for talking to boys…people would make it into something romantic, whereas I just wanted to hang out with boys because I found them less judgemental of me. I was one of the few kids at school who were actually there to learn! I liked school and most teachers! (MOST…the others suffered though :)) I would have been a very happy kid if there were no other kids at school…if the teachers were all there just for me! So when other kids liked to get to school to see their friends and looked forward to lunch breaks….I actually only looked forward to classes…and dreaded lunch breaks!

So I wandered about at school for years keeping up a facade of a perfect little robot….(I was never perfect at it though)….I was getting good marks, but I was suffering from anxiety, insomnia, self loathing, loneliness, isolation inside myself….I had no REAL friends. My boy friend from down the road, who had been my bestest buddy in the world since I was 4….. His parents won tatts lotto and they moved away. I had those “friends”, but their company very much replied on me conforming to their ideas and beliefs, so I felt I wasn’t being authentic.

THEN came along Sally! In year 8 Sally arrived at my very nice wholesome catholic school…she had a short skirt and wore makeup and had an ATTITUDE! But…I also noticed in class that she was very bright. She was also absolutely instantly rejected by everyone in the class, male and female, AND many teachers. I don’t know if it was that we were born only two days apart, or that she was outwardly expressing the depression that I was hiding, but I gradually befriended her. She was very untrusting and hesitant at first, but once she realised this little geek was for real, she and I became friends. (She said she was Fonzie and I was Richie Cunningham..I think I’ll a little Potsy and Ralph Malph too)

When Sally appeared, I had finally found someone who was witty and clever and questioning…someone who understood feeling left out or judged. We were quite the odd couple and my other “friends” told me I was to stop associating with her because of how she looked and her reputation. Though our schoolwork was great, teachers started separating us in classes. I think they didn’t want me “tainted” by her, but the truth was, she was actually helping me to speak and be myself. I wasn’t interested in going out and partying or chasing a heap of boys….. Poor Sally had abuse issues and was acting out her own thing. I wasn’t like that, so I didn’t go out with her outside of school. I would visit her house, but not when she had a party.

SO…..Our school excursion was coming up. The teachers announced that the camp would be divided into two groups who would go separately to camp. The teacher read through the list, obviously grouping people with their best friend groups…Except Sally and I. We were put into separate groups. I was put in with my “friends” from the year before who had been excluding me since I was still being a friend of Sally. I had never really looked forward to camps, but this one I was dreading now I was completely isolated. And it was very obvious the staff had gone out of their way to do that.

CAMP….
So first I have to face that horrible thing of getting a seat on the bus. People saying “No this seat is saved”. So I sat near the front…and could hear people speaking about Sally. Saying mean things….I knew she had issues, but what they said was off the mark. And they would say it loudly and would then say my name. I wanted to die. I felt nauseous and spoke to one of the teachers about geology to make myself block out the conversations behind me.

We were then put into groups for our rooms. Of course I was put in with the nasty little girls who the teachers thought “Would be good for me.” I chose a bed and was then told I couldn’t have that one… One of the “boss” girls wanted that one. I was put in the bed on the other side of the room. The girls were sometimes including me in conversation, but half the time I couldn’t tell if they were being mean to me or nice. They would say things about my clothes or hair…and then laugh and if I looked confused, they would say  “No I didn’t mean it bad” and then laugh again. These girls were sweet little Catholic girls…sweet to who THEY decided was “one of them.” The girls all wore heaps of perfume and sprayed deodorant constantly. I would have to hide my head under the blankets, which of course made them say things about me making a big deal out of nothing. (Nausea, headache, brain gone fuzzy…nothing to them maybe!)

Mealtimes were hell. I am still a fussy eater now, but back then I was even worse. I ate butter, not margarine. I didn’t eat fruit or veggies. I didn’t eat pasta. I didn’t eat rice. I didn’t eat anything other than meat and potatoes basically. The thought of having those textures or colours in my mouth made my adrenaline kick in and I’d feel sick and shaky. I knew how to not eat things….just leave them on the (contaminated by vegetables) plate, but sometimes, if the meal was spaghetti for example, I didn’t get to eat at all. Depending on which staff member I asked, some would say  “Too bad You get what your given so eat it” Which of course I wouldn’t. I had a nice teacher who would make me a sandwich if I asked sometimes. Otherwise, I had my secret stash of food in my bag that mum had packed. She knew I would need energy on camp, and she knew that I may not eat if she just trusted the school to feed me. Other kids would sometimes make a big deal about what I ate, or try to make me try things…..Or put other things on my plate to freak me out. There were always comments about me being fussy, like I was precious. But I didn’t want filet mignon! I was happy with a sausage in a piece of bread. I just wanted to eat and have no-one take any notice. I still hate dining out and avoid dinner parties…my friends only invite me if they’re having a BBQ :))

Then came the “camp activities”. Oh how I  hated those activities!!! One was called Ambulance…. Everyone had to jump on each other and hold onto others in a big knot of people…. Then the “paramedics” would try to drag them out one by one. I would just hold someone’s shoe on the edge and let the paramedic pull me out first. That was one competition I had no desire to win!!

Another activity, you had a short straw in your mouth, and had a lifesaver, donut shaped sweet, on it. You had to turn to the person next to you and lean in close and transfer the lifesaver to their straw in their mouth. The NT kids thought it was a riot! I would just drop my lifesaver and be out straight away on purpose. I hated circle activities with nowhere to hide and even just the part at the start when they said we had to hold hands to make the circle.

I DID enjoy one activity. I liked the small group discussions about religion/philosophy, inclusion, etc. The only trouble was, anything I said in the group, and the group may have even been really accepting of it or said it was good, I would get outside, and the next thing, those people in my group had twisted something I had said and the other kids were picking on me about it. So it wasn’t even safe for me to have a real discussion without the bullies wanting to use it against me.

The worst thing was “free time” though. This included a big mud fight once. I was holding someone camera so no one dragged me in, then I ended up holding all of the cameras (and taking the photos, which is actually how I started to become a photographer seriously, I learnt that if you TAKE the photos, you are never in them 🙂 AND people don’t push you around if you are holding the cameras, AND if you make sure the photos are good, people will ASK you to do it again!

Other free time activities that I was petrified of were boy/girl pairing off and kissing, etc. I saw how girls were picked on if they said  “No”, but I wanted to say No, but I didn’t want to be called “frigid”, which was the BIG insult, so I made up a fictional boyfriend. SO instead of being called frigid for saying no, I suddenly was being labelled a tart! (And I didn’t even kiss a boy until 4 years after this!)

Off to bedtime and I have to lay and listen to the other girls talk as I go off to sleep. When they think I’m asleep, they proceed to whisper about me and how I don’t eat certain things, what I said, how I didn’t want to kiss the boy, etc. I was crying and dying inside and just wanted to be at home! Sisterhood! Phooey! Not if you’re not a full blood sister apparently!
This was the last school camp I went on. They allowed Sally on one camp with me…where there was no choice, so I went to that one. And even enjoyed a lot of it. There were still those same moments…..People are people. There were still bitchy comments occasionally, and awkward moments for me when I had to hide for a while, BUT when I had Sally there, half my anxiety was gone, because I wasn’t alone. Alone we are far more vulnerable to bullies. And bullying isn’t always obvious…Especially with girls. They can be amazingly evil with just a look or using they’re networking skills…. I wished I’d gone to a boys school, but I know they wouldn’t let me in 🙂

(Sally Update: Sally is now a lawyer and high up in law enforcement. She is far more successful, together, happy and wholesome than those who judged her…Once she was an adult, and got past her abuse, she did well. The others, once they got out of school, started wearing mini skirts and lots of makeup 🙂

Tad Auty

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