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.

Working it out...is it "normal"

It's sometimes hard to work out if your child has a behavioural/neurological problem or just "normal" with a few quirks. We all have quirks don't we? I do *grin. Maybe they are just a bit behind in development...or too far ahead in development??

Should you do anything..or wait to see if they grow out of it? Is it just a phase? Do you have friends and family telling you your child is 'fine'....even though you don't feel it?


The best way to work it out is look at how much it's affecting your lives. Does the quirky-ness or the behaviour happen all the time? Does it stop you (or make you think twice) about going shopping for example? Is is ridiculously hard to get out the front door every day? Are you avoiding certain situations because you know the likely result for your child/family?


Of course kids can bounce off the walls - all kids are full of bounce!
Lots of kids are fussy eaters.
Heaps of kids don't like loud noises.
ALL children have tantrums.
Lots of children lash out in frustration.
Lots of kids like to play on their own...or are shy.
Heaps of kids like to "be the boss".


It becomes a potential issue if it's all the time, or most of the time. Your friends and family don't live in your house and see how often the problematic behaviours occur, so well meaning advice like "oh she'll settle down", "my kids do that too" aren't always helpful.


Go with your heart. Listen to yourself as a parent.

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.

A very happy ending...

This post is copied from my other blog...

I WIN.

Although I apologise for the hysterical tone of my last post. My world had fallen out from under me - something I was working really hard towards had been whipped away with one phone call. It was unfair and wrong. The entire situation should never happened at all.


But it did and with the help of some fabulous webfriends I refocussed and lined my ducks up in a row.


Today I called the Independent School Board. I called Cyclones Neurotherapist. I called Autism Victoria.
I emailed my Uncle Forry, who is the head of a boys boarding school.


and I called my mum.


I sketched out the timeline with the help of my diary and my blog, sans emotion. Just The Facts Jack. This helped me stay on track when I was talking to people.


No one promised anything and I knew they couldn't, I just hoped that the situation spoke for itself.


At 3pm I received a phone call from the principal of N School. She apologised. She said yesterday was an awful day for us both and that she wanted to work something out for Cyclone. The school has held a meeting and decided to open a third class due to demand.

I recognise their might have been an influx of candidates for this school, but it's no reason to push Cyclone aside. Or whatever it was that nearly happened there...
I chose to think the Principal was overwhelmed, and that she mucked things up. Nothing more sinister. The apology was very sincere and in a tone far far away from the one she used with me the other day.


Thank you from the bottom of my heart to

Diminishing Lucy, Muffin Monster BB, Lady Astrid and The BFG for your support and justifiable outrage.

Madmother, Purple Cath and Jen - thank you for your practical advice - I took it all on board.


I envisaged myself in full battle gear dancing upon the smoking bones of my slain enemies but actually I'm just exhausted. Quietly pleased that the whole episode was over quickly and looking forward to Cyclone starting at school next term.





I can take on these type of battles and in fact I consider us lucky that it's things we have a chance to beat. We are healthy, we are together, we have a roof over our heads.....and once we get cable TV again things will be as perfect as they are going to get in Unperfect Land.



Cheers,