So after nearly a full term at school....

We have lift off!

Cyclone is attending from 9.01 am to 3pm. Already!! Here I was hoping for 3 hours a day *grin.

So we started off with 2 weeks of one hour blocks with the classroom aide. They played games together and had a lot of laughs. I know they walked around the school and playground whilst the students were in class to get him familiar with the surroundings without the cacophony of the whole school out there.

Cyclone had to walk across the back of the classroom to get to the computer/quiet room in the beginning and I could see how hard that was for him. His little head down, willing no one to notice his presence....

The school wanted him to extend his hours fairly quickly but I was nervous about too much too soon. I decided I might just let the school lead this side of things. I was to pick him up just before recess.

It went perfectly well until one day I was late. I was worried about his reaction because he gets so anxious if I am not waiting for him...but this time he wasn't waiting for me. I couldn't find him - there was a sea of children playing on the oval, running all over the place. I ran into the office but he was not there either. I finally picked out Miss T, who has been our main contact and funding help. She was standing on the edge of the oval and when she saw me she pressed a finger to her lips, then pointed to a group of boys having a rough and tumble game of football.

"Cyclone, CYCLONE - kick it to meeeee" I heard, then finally realised they meant MY Cyclone. He was playing footy with the boys.
He kicked and passed and threw himself into the pack. They were all having a great game.

I nearly cried. Then he spotted me and instead of throwing himself on the ground because he didn't want to leave, he just waved. When the bell went for the end of recess he ran over to me, asked for a drink and said "I've been playing footy with my friends mum" Big grin. His new friends all trooped past on their way back to class - waving goodbye to Cyclone, and Cyclone nonchalantly waved back and headed to the car.

This is the stuff of dreams for this mumma. Remember - Cyclone doesn't play games easily, he wants to control everything, be the boss and always always win.
And there he was - just one of the boys.

Very quick one...

Just to let you know things are going VERY very well with Cyclone. He has started school...but this means I have a little more time to catch up on everything that has fallen to the wayside in the last few months.

I'll be back soon to tell you all about it - it's all great news!


Cheers,

Another first day at school.

Off we go again. This time armed with a far better understanding, a heap more direction, and a team of people committed to Cyclone, his education and happiness.

I spent a LOT of time being pissed off at the lack of choice. I found a perfect school, one with a philosophy I truly believed in, but since it was non-government - getting funding for help in the classroom was near impossible.

There are schools that specialise in Autism....but not for Aspergers. Cyclone is a challenging student and will take up much of a teachers time. He needs a classroom Aide to help him with his anxiety and stress. Funding-wise he will be better off in Government school as it's far easier to obtain. Due to the complete idiocy of this other stupid school we were left with no enrolment, no funding and the year is nearly over.

Therefore I had to enrol him at the closest local as they are obligated to take him. I don't really like it at first. It's kinda ugly, no trees and lots of concrete. I have Cyclone's little sister enrolled to start Prep at the school in the next suburb because I love the environment. Lots of open grassy spaces, plenty of trees and a huge open junior class area with huge picture windows.

I know it sounds silly but environment is important to me ok?

It turns out the local primary school is huge on integration, they have students with all sorts of abilities and a parent group for support.

I made an appointment with the principal to explain the situation. She checked my street address.....to make sure of their obligation. At the meeting I told them the story so far - starting school, stopping, homeschooling, being messed around and my need to get back to work. I gave them the reports so far and arranged for more.

I think being aware of rights/obligations and the fact I am realistic about the situation has helped make a good relationship with the school so far. I get the impression a lot of superkid parents just want the school to fix things themselves or are in complete denial of their childs issues. I keep being told what a great job I am doing and how they appreciate the support. I tell them I appreciate them moving things around to accomodate Cyclone and that we will surely have a happier little boy doing great things soon.

So far Cyclone attends for one hour a day. The plan is to establish a relationship with the integration Aide (who was already there), to have a positive experience and feel safe at school. So far they just play games but yesterday the Aide had him reading a book and writing numbers. Already!

We know there will be a reversal, there will be hiccups but this term isn't about academia. It's about laying down a strong foundation for the rest of Cyclones primary years. We hope he will be there 3 hours a day by the end of term.

I have registered for homeschooling again for this term, as I will continue to handle the basics. Even though I'm a bit crap at it, I'm finding more information about the Aspy brain and how it learns. Very interesting, I feel like I'm finding little keys everywhere.

So - where was I?

Oh yeah, I've been meaning to respond to some of the comments I've had over the past few weeks.

Thank you for your suggestions and encouragement, I really appreciate it and I'm willing to try anything. I did start this blog to keep track of everything, to be some sort of information for those who may start along this path too. To be honest, the last few months have sucked so badly and I think twice about posting.

Because I kinda don't want to scare people for want of a better word. I didn't start down this path as quickly as I should have because part of me stuck my head in the sand. Please remember - no two children are the same. EVER. Not even in spectrum world.

I look back and think about when Cyclone started school this year. He was so ready and looking forward to it. He cruised through transition and took to it like a fish to water. Then as the days went on and the stresses increased his teacher kept telling me he complained of being hungry, thirsty and tired.

Here I am packing his lunch box full to the brim, putting 2 drink bottles in his bag and sending him to bed at 6.30pm - all to no avail. *feeling like a NOT awesome parent by the way*.

I have since learned that this is how he distracts people. He isn't hungry or thirsty at all, but it certainly works to say that you are. Same with being tired. Little fella is smart enough to remember me saying "you must be tired" when he chucked a tanty and used it for his own means later on!

Anyhoo - handwriting etc. We do have a whiteboard, we also use chalk and greylead pencils and an eraser. It does decrease the anxiety somewhat. The best suggestion from our OT was to use shaving cream of all things! He really loves this.

I also finally found the correct "victorian cursive" lettering used in Primary Schools here. Lots of the books just have printing and I didn't want him to become familiar with one style only to have to re learn something he was happy with. Lucky me, he LOVES the scrips - calls it "fancy writing" and seems happier writing this way - Huh? Don't ask me...

OK, so maybe not THAT school after all *sheesh*

Alrighty, so after my sterling victory with The School The Stuffed Me Around BIG TIME, the principal did a lot of apologising and we arranged a date for a proper trial. He wasn't to be there for very long, he was to meet his new teacher and hang out a bit so they could observe and get to know him.

He didn't want to go but I told him he needed to get back to school and this place was nice, quiet and didn't have too many kids in the classroom and he might feel better with less noise.

He carried on a little, lying on the floor and doing the usual testing of a new persons mettle by ignoring them. He came around quickly when we got the lego out and I breathed a little sigh of relief.

Then it was time to have a look at the current class. The boys were sitting on the floor listening to a story. I warned them he was very anxious about walking into a room full of people so I sat in there first and waited for him to join me. He didn't. He stood at the door for a second until the teacher looked up from the book and said - "Come here and sit on the floor". Quite roughly I might add.

I AGAIN was gobsmacked. Who on earth speaks to a child like that, let alone one you KNOW is nervous? Anything wrong with a smile and "would you like to join us?"

I felt like I was in a different universe there for a second. A stupid universe.

So Cyclone said pfft to that and headed for the door. I told them not to chase him but they did. I called out that he would only do and stand next to the car and wait but the teacher chased him through the carpark and grabbed him. There was no danger, this woman just freaked out. He tried to get away, she gripped him harder so he called her a fucking idiot arsehole. He saves those words up for when he really needs them (like feeling threatened and wants people to rack off).

So that was that. They can't accomodate him as he is too full on. My head is spinning but quickly realising these people have no fucking idea. We talk for a bit and they recommend another school and when I reject that the Principal gives me another option. She calls me every second day to see how I am feeling about it - and frankly feel like I have dodged a bullet.

This is backed up by another super spectrum mumma (through here - thank you oldschoolgeek!), that since advised me nearly every spectrum professional in the known universe is totally against this school for spectrum kids.


Why the hell do they consider themselves the right place for super kids?? I spoke to them at length a few months ago about his behaviour/spectrum/sensory issues and tells me they can certainly help him. How dare they wax lyrical about how they can help when all they are doing is running some sort of military academy. Yeah, smack them back into shape is all they need, right?


I'm angry and sad. Not because we built up to go there, but because it was a complete waste of everyones time. I could have had him sorted somewhere else. Now it's 3 weeks from the end of term and I have to spend days looking for a new school, negotiating him beginning Term 4 and starting the transition process. I could have been doing this weeks and weeks ago.

Just for the sake of it I'm going to mention this again. EARLY INTERVENTION.

All of this could have been avoided if we had help sooner.

ODD/ADHD

Signs of Oppositional Defiance Disorder (some of them, taken from the Oasis Guide to Asperger Syndrome)

*Frequent Temper Tantrums
*Excessive arguing with adults
*Active defiance and refusal to comply with adult requests and rules
*Deliberate attempts to annoy or upset people
*Blaming others for his or her mistakes or misbehaviour
*Often being touchy or easily annoyed by others
*Frequent anger and resentment
*Mean and hateful talking when upset
*Seeking revenge

This is Cyclone ALL OVER. Every day. It's just ridiculous and he is so freaking NEGATIVE it drives me spare. Poor kid - how can you be happy being like this?

Cyclone isn't happy. He has nightmares and relives the days events. Some nights he cries at bedtime because he hates the things that he does. "I can't stop it mummy, my head gets all hot". He hates being like this, he says he hates himself and the world hates him too.

Never more heartbreaking words for a mother to hear from her son.


ADHD


The three primary characteristics of ADD/ADHD are inattention, hyperactivity, and impulsivity. The signs and symptoms a child with attention deficit disorder has depends on which characteristics predominate.

*Inattentive but not hyperactive or impulsive
*Hyperactive and impulsive, but able to pay attention
*Inattentive, hyperactive and impulsive (the most common form, and this is Cyclone)



Attention deficit hyperactivity disorder (ADHD) is a disorder that appears in early childhood. You may know it by the name attention deficit disorder, or ADD. ADD/ADHD makes it difficult for people to inhibit their spontaneous responses—responses that can involve everything from movement to speech and attentiveness.

The signs and symptoms of ADD/ADHD typically appear before the age of seven. However, it can be difficult to distinguish between attention deficit disorder and normal “kid behavior.” If you spot just a few signs, or the symptoms appear only in some situations, it’s probably not ADD/ADHD. On the other hand, if your child shows a number of ADD/ADHD signs and symptoms that are present across all situations at home, at school, and at play it’s time to take a closer look.

(from Helpguide.org)

I've refused to consider ADHD up until now because of all the negative connotations and constant mentions of Ritalin. I'm researching everything properly now.


My poor Cyclone - so far it looks like he has the Full Menu of Neurological issues. Lucky he has a FANTASTIC sense of humour and is really, really, good looking.

More possibilities

Our lovely Neurotherapist came here so we could have a talk about Cyclone without him being in the room.


It's amazing what Cyclone can hear even when he appears to be engrossed in something else (selective though!). Even though he isn't in the same room!


So both the Neurotherapist and her assistant feel that ASD isn't the main problem with Cyclone. In fact she isn't sure it's a feature at all. In her words "I work with Autism all day - and this isn't Autism". WOW.

2 of the main reasons Neuro chick brings up is his obvious awareness of his behaviour on others. He quite often threatens "If you don't do this - I'll GO OFF!". That's a choice. Aspy kids generally have trouble understanding human behaviour and cues. Cyclone doesn't. In fact since he was a baby (remember the headbutt at 5 months old?) he would drink in reactions. In fact so much of his horrible behaviour was him trying to get a rise out of people. Scorpio and I used to ignore most of it and he wouldn't do it. People in the supermarket would look at us in shock/amazement, Cyclone would see it and that would therefore CEMENT the behaviour forever. Thank you judgemental dickheads.

The other - his superior verbal skills. Huh? I thought that was one of the main reasons Aspies go undiagnosed for so long. They can wax lyrical on all sorts of subjects. Neuro chick says, yes verbal skills awesome - also verbal understanding awesome.


They want me to press forward for a possible diagnosis of ADHD. WOW. Now I understand things like ADHD, ADD, ODD (oppositional defiance disorder), Anxiety, OCD cross over with ASD or present in a similar way. I suppose this is not really news to me. One of the first things I started to research was ODD - not Autism. We pushed for a fast diagnosis of Cyclone in order to gain access to the Early Intervention Funding, and although he scored in the Aspergers range on the CARS scale there were always different possibilities that we needed to investigate....and it could not happen without funding.


It is not uncommon to have one diagnosis and it later changed. This AGAIN is one of the main reasons for EARLY INTERVENTION.


Being at home with Cyclone all these weeks has shown me really how impulsive, inattentive and hyperactive he is. These are main signs of ADHD. When we are at home he is busy doing his own thing like most kids. When he is required to pay attention or concentrate on an activity NOT of his own choosing.....it seems near impossible.


It COULD be the anxiety of ASD that causes him to stress and blow up when it comes to writing his name. It COULD also be the visual processing/sensory issues he has that floods his brain. Everything could be anything at this point *rolleyes*


In any case - forward we go to investigate new possibilities.

Fuck I'm TIRED.

Frick

We have been at home for weeks.

I have just about every learning tool known to man. I have reams and reams of patience. I have a sense of humour to the sky and back, and I know how to make things fun. I know my boy to the sky and back but this is just too hard.

We can do no more than 20 minutes at a time. That's ok, but those 20 minutes are filled with stress. Even when we are having fun I cannot keep his attention. We have regular breaks. He has things to work towards and that does help a little. A LITTLE.

I do physical therapies with him, activities that use his body and muscles and break up the day with that - but nothing is really making a difference. I can see how the teachers at school were saying this was way out of their league/expertise.

We have 3-4 appointments a week. I have the program from the neurotherapy clinic.

The program consists of -

"First and Then" = 'first we do this (something he dislikes) THEN we do this', to help move him from one activity to the next.

Cool/Not Cool = we talk about feeling angry and what are the 'cool' and 'not cool' ways to express it. Anger is a normal feeling, not to be suppressed.

Emotions = we look at different pictures of faces and guess what those people are feeling. We also have alot of fun pulling faces at each other and doing different expressions.

Relaxation = we do various exercises to help him get through stressful times.

Why Because = talking about why we should and shouldn't do things

I mark this off in the folder, I take notes - all on top of everything else I have to do.

Which in fact means I have no time for anything else. The rest of my family, paid employment, having a haircut, having a solitary thought to myself, renovating my house which at this time sits empty with no tenants.


I don't think we are getting anywhere. There is more going on here and it's so far over my head I'm completely lost.

What I am learning....

SO. I waded through the list of service providers on the Provider List. I have found a Psychologist. A Behaviour Specialist. I don't know what they will do or how they will help, I just know that someone, somewhere along the line told me it was a good idea.


I love the Psych straight away. She engages Cyclone from the first moment.....and he falls in love and immediately starts showing off. BEST behaviour. Packs away the toy he plays with before selecting a new one from the shelf. Without being asked. The Psych notices my jaw on the floor and winks at me. (***note this point well, I'll address it in the next post***)


Her assistant mucks about on the floor with Cyclone whilst I tell her why we are there.


After I explain the story so far, the psych gets back to Cyclone. She whispers to me not to interfere, that she is going to try and push some buttons. She does this in seconds.

She also brings him back. Then she sets him off and brings him back again.


I realise I am here with people that are knowledgeable. They know, they understand how this brain works and I am grateful they are there for us.


The psych is quite young and once I think that would bother me. I once would prefer a wizened old professor type with leather patches on his elbows nodding sagely over a mahogany desk. Years of experience behind him.


Not now. Autism has only been really recognised and studied over the last 20 years or so. My father is a (retired) psychologist and one of the first things he said after reading the diagnosis report is that 'they seems to be doing all the right things, but so much has changed, so much more research done'.

I spend 2 weeks filling in a behaviour sheet and return for a second appointment where I am shown all sorts of exercises to do at home. Recognising emotions in others, relaxation and self-soothing, using pictures and flow charts to help Cyclone move from one activity to another. I note to make it as fun and happy as the psych does herself.

I think Cyclone is in love.

I get a HUGE folder at the end of the appointment to record what exercises we do and how often. I also am given a 'contract' to sign - which states that I must recognise the value of persistence. That I (and the family) must commit to the strategies given, that it is a long road but the benefits will be enormous.

This is early intervention.

So now I don't mind that I am homeschooling. It give me more time to work with Cyclone. It gives me solid direction and although it's tiring and frustrating at times, the more I remember to laugh the easier it is.

After the diagnosis ach - the paperwork!

So I got the Golden Ticket. Otherwise known as the Helping Children With Autism package.

Cyclone is now entitled to $12,000 in government funding because he is on the Spectrum and he is under 6.

Well, we got the diagnosis two weeks before he turned six and I nearly broke my neck to get the claim in on time. We nearly missed the cutoff and I surely do not know what would become of us if we did.

The $12,000 does not go to me, it comes in the form of the Golden Ticket (as I call it), a piece of paper that I hand over at Cyclones appointments instead of actual dollars. I only have $6000 to use because the funding stops when he turns seven, but the usual is 12k to spend over 2 years on Early Intervention services. This could be used for

Occupational Therapy
Psychologists
Social Skills

and a whole heap of other things, like computer programs (Boardmaker) and equipment that might make things easier for you and your little superkid. You are also eligible for alot of parenting support. So far it's been a breath of fresh air to speak to people that really know what they are on about

Once your Golden Ticket is approved, and Autism Advisor will call you and help you understand what it all means, and you can ring them for advice anytime.

You will get a list of therapists and services you may use. It will overwhelm you.

I got myself a portable file and a big diary. You will need it - trust me.




I quickly learnt to take notes of every conversation. I was losing track of the barrage of information on a daily basis. So many phone calls taken whilst hiding in various wardrobes/bathrooms/cupboards, so many bribes to keep the children from starting World War 5 at the same time. *sigh

There is also help for the over 7's - HERE is the link to the FAHCSIA site with all information on all packages.

I don't know how many calls I made over those 2-3 weeks, but I have to say again that every SINGLE person I spoke to were so helpful, cheery and so full of information it was just a pleasure to deal with them all.

So....homeschooling

I really wasn't prepared for this!

I looked up all sorts of websites, homeschoolers, Government Education standards and tried to work out what on earth I needed for this.

I decided on some approved workbooks - writing, basic maths, addition and subtraction. I bought plasticine, different coloured pencils and some posters so I can illustrate things in different ways. Cyclone is very hands on, and we have no problems with that side but he hates, hates, HATES writing.

If his letters or numbers are not perfect he throws himself to the floor. I push him to stay at the table, I high five him when he writes a row of C's, a row of 5's but it takes half an hour of him avoiding the task, fidgeting and fighting to get there.

I keep pushing him though it so he can achieve. When he achieves a tiny bit of anxiety falls away. We go backwards and forwards this way for days and days, then I have a breakthrough and I'm kicking myself for forgetting to HAVE FUN.

One morning, after another 20 minutes of screaming and threats after tracing over a's and hating it I pulled a face...OH NO, I say. What? Says Cyclone. What are we going to be about the poor ht? The tp? Oh and look at the poor bby!
Huh? says Cyclone.

Without the a, it's just a ht! Cyclone dissolves into giggles. I'm sure this bby wasn't born to be a bby, poor thing! Does this look like a got? I point to a goat. Cyclone jumps back onto his chair and looks at all the pictures I'm pointing to and asks why I'm calling it a ht, instead hat. Because there is no a - we have to save the bab and the ht honey, quickly give them the letters they need to saaaaave them!

He rips the pencil out of my hands, changes ht to HAT, bab to BABY and got to GOAT - all with near perfect a's, whilst laughing his head off. YAAAAYYY! Plenty of high fives. Tracing over the letters in the books causes him stress. Doing it on his own is much much better.

We continue in this way for a few days, then I find he has taken off with my shopping list and copied most of the words easily. He is not reading the words of course but since we started laughing about writing he doesn't mind doing it anymore.

We also bought special greylead pencils and an eraser last week. You can't erase the coloured ones and Cyclone likes things to be perfect as they can be. Except his bedroom unfortunately

.

Trial at the new school.

I took Cyclone to the new school for a 'trial run'. Well actually, it was just to give him a look around and for them to observe him a little.

It went ok, but he was determined he wasn't going to like it. There were only 6 kids in the class. Cyclone doesn't like walking into a room full of people. I didn't much either when I was little - of course he doesn't like it more-er.

He liked the room and the play equipment, he sat at the back for the story and called out a few silly things here and there but he shooshed when I told him to. He joined in well later.

Then he decided he needed to bolt. He wasn't ready to speak in front of everyone yet so he ran out the front door. I was a little shocked that the door was open because you have to buzz to get in (security - it's just a small place). I talked him back in and we stayed a little longer.

I spoke to the principal later in the week to see when he would be starting and she tells me they cannot accomodate him for the next term after all. What the hell? Last week she thought he would do fine there and was a great candidate.

She tells me the fact he ran out of the building was the main concern. They are on a main road after all... WTF? For one I can't believe the front door doesn't lock in the FIRST place. If they cater for children having trouble adjusting to school and many of them on the spectrum - aren't they used to them bolting every now and again?? It's a fucking Aspy/Autistic trait. When they overload they get away from the source.

In kindergartens and childcare centres all over the country they have the simple precaution of HIGH DOOR HANDLES. Yes this is a school but the kids attending this school don't have the emotional capacity to handle overload sometimes.

I cannot believe how angry I am. My son really needs this place. WTF am I going to do with him at home for an entire term?? The principal asks me to hold him over at the old school for another term. WTF? They have him in a holding pattern there (bless them) so it's basically costing me a fortune in part time babysitting.

I call several of the Autism Advisory services and they are a little shocked at where we are right now. He can't just enrol at another school for one term, to be moved to another then off to ANOTHER school in a year. In fact one person told me it would be criminal to do that to him. I agree. No one has any answers but alot of support and sympathy - but I could do with some so that's OK.

Holy fuck - he isn't a little criminal, he isn't taking knives to school or starting fires - he is just stressed and anxious, poor poor little fellow.


So I decide to homeschool. There isn't much choice and when I tell Principal of new school she is totally unimpressed and tells me it just won't do and he won't be ready to go back to a classroom after being in the comfort of his own home for so long.

Through gritted teeth I ask her what her answer to the situation is - she has nothing. This woman is really starting to give me the shits. I feel so berated after every phone call.

So what happens now?

The last post was written nearly 2 months ago. It's been a freight train since then.

I called the potential new school and spent quite a long time talking about Cyclone - they liaised with the principal of his school and feel that he would do very well there. They only have about 20 students and have alot of them are Spectrum kids . I am hopeful for awhile. They have a brilliant record of success, the children go for a year, then are transferred into a mainstream school after that.

There are 3 weeks until the end of term so I ask that he continues till then. The school arranges him to go to the classes he feels happiest in and keeps up the good work they have already done. Each day he chooses a different classmate to work with one on one. This way the kids get to know him a little more and learn he really is just like them........underneath the anxiety and rage.

It's now only half days, 3 times a week and the driving is killing me. 30 mins there and back for him to be there 3 hours. I'm exhausted.


We move house and it's not too bad. It's not far, the kids are used to the house. We are all more sad than anything. Cyclone keeps asking why we had to move and in exasperation I tell him someone is going to pay mummy lots of money to live in our house. His latest obsession is money and he seems rather satisfied by that...

I know he is a slow-release Apsy, I won't see immediate effects of the move until a few weeks later.

Oh btw - we have a firm diagnosis of Aspergers right in the middle of all this..

The Axe Falls

I got a call from the school today, asking that I come to discuss "Cyclones future with the school". Shit. Fuck.

I try to tell myself they want to get together to discuss a plan to accommodate his stresses. I have the whole weekend to try not to freak out. Fail.

So we have the meeting and I'm told the school feels they can't cater to Cyclones needs. He is running out of the classroom, alot of the time he slips off and freaks everyone out when they realise he is gone. I didn't know this and I wish I had because nicking off is a big Aspie thing. They run when they overload. If I had known maybe I would have started making other plans for him.

I knew he once ran into the building site and scared all the builders half to death. I knew he sometimes refused to return to the classroom after recess and lunch, but we were working on that and he was getting HEAPS better.

I knew he was lashing out at some of the other kids, this worries me terribly and he had NEVER done that before school started.

They tell me they love him, that they can see HIM underneath all the anxiety and sometimes he just surprises them right out of left field. Like the fact that he refuses to participate in class discussion - won't even sit with the others, but when it's his turn to 'chair the meeting' he does it with such style and confidence its a joy to watch.

But he isn't adjusting, he is getting more stressed as the year goes on. He did shorter hours for the entire first term, but wanted to stay all day with the other children. He worked really hard to keep his temper and come in as soon as lunch was over so he went to full days. Then he went backwards again.

I'm crying and angry at the meeting - we have only just got the Aspy diagnosis, I was constantly liaising with his teacher, I kept her constantly updated (and she was just wonderful when it came to strategies for him)......I know there are other kids on the spectrum there, why is Cyclone having to go?

Because he is getting worse, it's becoming too much for the teachers to search for him and talk him down out of the trees (literally) and because he has gone all stealth-like when it comes to running off they are frightened he will leave the school grounds.

The other spectrum kids will (apparently) calm down. Cyclone won't and he is upping the ante. They aren't equipped and funding is so much harder to get because they are a non-government school. The kids are unsure of him, he can play just fine but then he explodes. He goes through so many different emotions in minutes, school is tiring for him because he has to work so much harder to keep himself in check. There are other places that can cater for him and they feel he would be best there.

I'm devastated. I loved this school. I chose it because it's not mainstream, the ethos of the school is brilliant and it's run by the students and parents. The have ponies and geese, chickens and goats and the kids are nearly wholly responsible for the animals welfare. I could go on but I won't because it's going to make me sadder.

I've put one child through mainstream schooling and I just didn't like it. Now the best school in the world doesn't suit Cyclone. Or the other way around.

But, the Principal did some research and found somewhere else she thinks would be the right place. She has already called to check it out for me, they cater nearly wholly for spectrum kids and has a fantastic reputation.

She gives me the number. We shall see.

I just don't know how I feel about this.

Again - don't mess with The Cyclone

I've said it once and I'll say it again. Don't.Do.It.

Understanding the social side of things doesn't come naturally to Cyclone. Give and take, to and fro, the exchange of information, conversations that have more than one side for example.

Actually he doesn't do too badly, but he certainly has an unnatural hatred for anyone in authority. He also can't see why being an adult gives you automatic rights to ummm well.... being right.

In general boys seem to have a huge sense of justice and couple that with a child that has no fear of boundaries and you get this little tale -

I took Cyclone and his little sister Betty Boo to the local indoor pool to burn off some energy. Usually I jump in too but I was having a particularly fabulous hair day and I wasn't going to trash it with chlorine.

I stay close to the side and play with Betty in the shallow end with pants rolled up whilst keeping one eye on the boy.

I look up from Betty and see Cyclone yelling and splashing water violently at another parent and her child. HEY! I call out and race to the closest point to the action. Cyclone looks up at me with his face like a thunder cloud (but bright red) and retreats to the middle of the pool, shouting something I can't hear.

The other parent swims over to me and I go to apologise but something tells me to wait. So I do, and instead of saying sorry immediately I ask her what happened.
SHE apologises to ME and explains she asked Cyclone for one of the 3 floatboards (bigger than a kickboard) he had made into a raft and was happily floating around on.
He said no. She tells me she asked several times but he refused so she just decided to take one from him.

I was incredulous and it must have shown on my face. She apologised again and said she should not have done so "but I asked him 3 times and he still said no". Like I am supposed to agree with her that my son has bad manners???

I frostily pointed out to her that there were 2 other floatboards unused at the other side of the pool and walked away. It wasn't over then though. Every time that woman came within 3 metres of Cyclone he started splashing her again and they ended up leaving.

Well there wasn't much I could do at that point. I was dressed, it was noisy and Cyclone wouldn't come near me to talk him down because he had seen this woman come and talk to me and assumed he was the one in trouble. I just wanted to tell him that he WASN'T in trouble. She was terribly rude. He would have calmed down if he knew I wasn't cross with him (why would I be?)and he would have dropped the splash crusade and gone on his merry way.

I didn't care that they left. If she had accepted that he didn't want to dismantle his raft and found something else to do she might have been pleasantly surprised when Cyclone approached her shortly after to offer her a board on his own terms. He would have you know. He just needs a little more time to process the request.

Did the Aspyness of my boy work in his favour? I'm not sure....I think so. I know that if it had been my older daughter she would have just let the lady take the board because she was an adult and felt upset, bewildered and probably lost some trust in the adult kind (when they need to feel safe with us big people).

HURRY! Funding......

This is my heads up and warning to anyone reading this with a quirky kid.

If you have read some of these posts and have been nodding your head, if you are not sure, if you child is just fine in some areas but louder, faster, more-er in others, if you feel in your heart that things are out of sync for your child.

Don't fuck around.

Get a referral to a Pediatrician that specialises in Spectrum Disorders and GO. Not your usual paed if you have one already - a Spectrum one.

You may find your darling is completely neurotypical, just good at providing the usual hilarious moments, or you might find only sensory issues, or your child might just prove your gut feeling correct and land on the Autism Spectrum.

None of this is a bad thing! But if you end up with a spectrum diagnosis, you need to get to it early. Autism Spectrum Disorders (this includes Aspergers) are wide and varied - and personality counts too. ASD is not usually diagnosed until 3 years at least. If you child is wired differently it's best you get a greater understanding and early help.

ALSO, there is funding available (Australia) - yep $12,000 big ones to help pay for the various therapies. Social Skills, Occupational Therapy, Psychologists.

Cyclone nearly missed this funding. I wish I had got a diagnosis earlier instead of faffing around - or thinking it was a "phase" - or comparing him to other children on the Spectrum and thinking he was ok because he didn't do X Y and Z.

He is 6 now and having a terrible time adjusting to school. He is stressed, anxious and aggressive. Since starting school all quirks have become full blown issues or meltdowns, even though he was FINE at Kindergarten.

If I had an earlier diagnosis instead of sticking my head in the sand, he would have had HEAPS of help available for over a year. We wouldn't be where we are now. Things wouldn't be perfect but I'm sure he wouldn't have been so anxious, I could have helped him through changes....I could have done so much more.

The $12,000 is only available until they turn six. Get your butts into gear. Do it. Do it. DO IT.

What is Asperger Syndrome?

The following information comes from Autism Victoria www.autismvictoria.org.au.
As mentioned - the effects can be varied. Some kids are quirky, sometimes its hard to tell if it's that or something more. I have italicised how each points apply to Cyclone...so it doesn't seem as dry. Fantastic and well written info though.


A developmental disorder which falls within the Autism Spectrum. Main features of this disorder become obvious during early childhood and remain constant throughout life, although common features and degree of actual impairment can vary. Rarely recognised before the age of 3. More common in boys than girls.
Core features are lack of social skills, limited ability to have a two way conversation and an intense interest in a particular subject. Most of these children attend normal primary schools.

COMMUNICATION

Although these children are often highly articulate, content of speech may be abnormal, tending to be pedantic and often centering on 1 or 2 favourite topics. Sometimes a word or phrase is repeated over and over in stereotyped fashion. Usually, there is a comprehension deficit despite apparent superior verbal skills. Non verbal communication, both expressive and receptive is often impaired.

Cyclone is beautifully spoken, he often surprises people with his language. If you interrupt him when he is trying to tell you something he will get very frustrated if anything interrupts him and begins again from the start of the story, word for word.

When he was about 2.5 years old he told my mother a story about Thomas the Tank Engine - it went for 30 minutes nonstop and she couldn't get a word in edgewise.


SOCIAL INTERACTION

There tends to be impairment in a two way social interaction due to an inability to understand the rules governing social behaviour. A lack of empathy with other and little to no eye contact may be evident. Can appear to be stuck on the egocentric stage of social and emotional development. They tend to perceive the world exclusively from their own point of view. Although interested in social relationships often social contact is made inappropriately.


He wants to play, he wants to have friends but doesn't quite know how to approach other children. Either he runs up and threatens them or launches into a long sermon about how the planets orbit the sun or how what type of weapons a Jedi needs to defeat the Dark Lord.
He doesn't seem to get how games are played, he hates losing and berates himself for not being better to the point it is heartbreaking to hear.


SOCIAL BEHAVIOUR

Is often naive and peculiar. Can tend to be intensely attached to particular possessions often engaging in repetitive activities. Resistant to change, coping best when life is predictable. They prefer structure and may concentrate exclusively on matter in which they are interested. Are often known as loners who never quite fit in because of eccentric behaviour, peculiar ways of speaking and a lack of social skills.


Cyclone just wants to build all day. When there have been shared toys (like blocks) at daycare, kindergarten or school he assumes they are his and cannot bear to share them. He builds wonderful structures and others are welcome to help as long as they follow his instruction. If not he berates them horribly and they retreat.

COMMON FEATURES

*Excellent rote memory, absorbs facts easily. *Generally performs well with maths, science and reading. *May be anxious and unable to cope with criticism or imperfection. *Often the victims of teasing and bullying leading to withdrawal into isolated activities. *Can appear to be clumsy and have an unusual gait or stance. Often seen as odd or eccentric. *Language appears good but may have limited content and poor social understanding. *Self interested and lacks empathy.

He walks fine. He isn't clumsy. He gets bullied sometimes because others seem to pick that it's easy to set him off. At least he "brings it" and follows through with his threats rather than talking tough then running off to his mother crying when it doesn't work out. Am I terrible for saying that? I don't care if I am, I hate shit-stirring little bastards. At least Cyclone means what he says.
He says terrible things that upset others though, and doesn't care if they look shocked or upset

The real First Post

I should have started this ages ago. This blog will be about my travels with my son, Cyclone. Not a geographical trip, just the story of how it is.

Ok, so I have written 2 pages in about 20 minutes so I suppose we should consider this blog a debrief too.

It’s been a hard slog with my boy. Right now he is in the middle of a long assessment for a possible Aspergers Disorder diagnosis. He is nearly 6 years old. I haven’t done this before now because it’s been so hard to work out if there is anything actually wrong. Sometimes the tantrums and meltdowns and yelling and stress are gone and you forget there was a problem. Then you get so used to everything, you only notice when you see your friends children and they don’t make weird noises, throw themselves around from the moment they wake up or scream death threats when it’s time to go home.

As I type I can hear him screaming a full volume and threatening to smash the Wii because he can’t get the disk in.

Cyclone has started school this year but he only goes half days because he just can’t handle all the input. He can’t handle changing activities, he only wants to build things all day. I’m noticing patterns of behavior and I can see why I’ve been so confused about it all. He can handle change (?). It takes a long time but with lots of encouragement he gets there. Then I take a deep breath, smile and think –“well done son, you overcame this battle” and believe there is nothing really wrong. He just takes a while to adjust, that’s all. Then the shit totally hits the fan and his behavior gets worse in a different area.

I kinda feel like those kids you see at the water fountains that come out of the ground. They try to step on all the holes so the water won’t come out. That’s me – but it’s series of volcanos I’m trying to keep a lid on.

free hit counter

Hey

Ok, first post, and it's going to be a pearler.

* and if you are offended by the F-word, and by that I mean fuck, you may as well click off now.

So I'm Lulu and I have a human Cyclone living in my house, he is also known as my son.

Cyclone has literally just a week ago been diagnosed with Aspergers. He was a little higher up on the spectrum than I expected but apart from that it's no great surprise.

I'm going to tell you how we got to this point in the posts that follow. It's going to be good for me to have a record.

But for now, it's just about today.

It is really starting to get to me. It's the people, my family and even some friends.

They hear me when I say what the diagnosis is, then go on to tell me what I need to do, how I should do things differently.

Usually it's followed by lines like "my friends sister has a kid with Aspergers and he did/didn't - this/that/the other usually to indicate that because my child does/doesn't/won't/can't do the exact same thing as said children that I don't know what I'm talking about.

Or I'm doing IT wrong.

This to ME indicates that THEY don't know what they are talking about and I AM NOT doing things wrong.
If you don't understand or really know much about it how about you just ask me not rely on what other random people with their mythical fucking Spectrum children have told you.

Then I have to spend half a fucking hour explaining exactly what Aspergers/Autism really means. Even though I have done this 5 times already.

Already I can see people literally erasing Cyclones personality and pasting something else over it. Something else could mean - crap parenting, not being "firm enough", not having a better routine - whatever.

Now I get the "label" thing. I didn't care about labels before. They could mean anything and we all wear labels - either put there by ourselves or other people. Right or wrong, I don't care how people label me. I don't care if people give Cyclone the Aspy label - as long as they actually know what that means.

I know you know what it means when you say "oh ok, cool" or "yeah were you expecting that?" or even "shit hot, now you can get funding to help Cyclone". Other Aspy/Austism parents (I shall find a better label for that hahahahaha!) just ask how your alcohol intake is.

So for now, I am just going to photocopy Cyclones medical reports, information on Sensory Integration Dysfunction and a list of books to read and have them all ready on hand anytime someone irritates me by being an ignorant dick.