Can I Scream Now?

There must be something in the water, or should I say something stirring my waters... But like the wonderful Kelley over at MagnetoBoldToo I have had this horrible feeling of dread for weeks now.

Waiting for the other shoe to drop...

My child is a complex blend of brilliance, blinding beauty and batshit craziness. My child dazzles in his happy moments, and despairs in his darkest depths. My child, who puzzles all of us... even his psych, with his inability to understand the social web of life, whilst being so far advanced of his years in articulation, emotional perception and intellect.

His teachers, whilst wonderful, just don't get what his short life has been like with a brother on the spectrum.

One of them did the unthinkable today, the cardinal comment sin. We talked of the incident last term, when he once again lost the plot. We discussed the "why" theories... the catalyst of this climactic conflict of character that is my youngest son. And then whilst I brought up and spoke of the content of the post I wrote for Autism Awareness Day (though I cheated and called it an article, lol), of how he had been shunted aside in the early years... she brought up the dreaded comparison of "Oh, we all do that, I did with my kids due to the age difference..."

I did not scream. I did not curse. She meant no harm.

But seriously? Don't ever fucking tell me it is the same thing. Don't ever, ever dare to compare the white bread niceties of your life with the charred black toast of ours.

Fuck.

Seriously.

Or as my youngest son would say... Indubitably.

Still waiting for the thud of my left foot shroud to tell me it has hit.

In the Lady Garden...

Bah - have I caught you all out again?

Naughty, naughty peoples. Okay... I'll 'fess. I did it deliberately just to get you here.

I have spent most of today, in between the rain showers, in the garden. Ripping out weeds, cutting off branches, culling, tilling, working out my frustrations.

I am pissed. Actually, I am tense and because I am tense I am pissed. And so off to the garden I run, taking out the boundless frustrations on the rubbish which grows where it should not.

Tomorrow I have to have the last of my scans. I know, logically, that it is unlikely to be anything, but we all know that being sensible is not the most obvious of my attributes. Okay, not really one at all. I don't like this sort of stuff, puts me on edge.

And to add to this, a mother at the school has decided I am to be the focus or distraction of her rage because her life sucks. At least, that is the interpretation I am getting from others. All because of a Facebook comment, taken the wrong way (personally), explanations, clarification and apologies all ignored. FAAARRRKKK - I thought I had left primary school a long time ago, but no. This nearly 50 year old woman has absolutely fixated on me being the root of all evil. Personally I think it is an altogether different type of root she needs and it ain't the kind I was ripping out of the garden today! Hasn't been an issue, but this morning I didn't realise I was parking near her... until Boy 2 said: "Mum, what have you done to that woman, she looks like she wants to kill you!" Look across, and yep, gaze of death glaring through my windscreen.

Had to laugh when I explained what had transpired in brief and he responds with "Great, another person who is in dire need of mental health." And they wonder why I say he is my mini me? And no, I didn't go off about her or her issues, merely said she had decided not to talk to me anymore after the FB comment and told him what it was. Because it seriously was not bad, and it was about special needs which he understands the implications of.

And honestly, most other days I would have laughed it all off, but this is not most other days... it is the day before. So I am allowed to overreact! After all, I am nothing if not a  

PS Garden is gutted. Totally.

Hyperventilation - The New Coping Mechanism

Yes, I have been off the radar AGAIN.

Yes, I know this poor blog languishes untouched.

But I have rather a lot on my plate right now.

We have until January 31st to be completely out of our shop. That means packing stock, files, fitout and anything else not nailed down and moving it into our storage shed on our property. Which is an hour from our shop.

I am listing madly on eBay only to have some idiot buy one of the expensive display cabinets (one of five) but not win any others thus "he doesn't want it" and becomes abusive when it becomes an issue for me.

And tomorrow... tomorrow... is Boy 1's first day of High School.

Hard for any child. Especially hard for a child on the spectrum.

We feel it is the right choice. A small private school (capped at 225) which caters to the individual, encourages success socially and academically, sets the bar higher but not out of reach.

BUT... it is a totally new environment.

"I am nervous" he tells us.

"I am excited" he tells others.

The truth is somewhere in between.

I am hoping that he is okay, that he is just nervous, not on the verge of meltdowns or terrified. It is so hard to gauge the degree to which this nervousness will affect him. It is so easy for him to lose his grip on his emotions with such a major change.

We have done all we can to facilitate this move, have prepared as much as possible - both him and the school.

His two best friends are not here, they both are going to the public school. This is part of what worries me. How will they see him? Will they get past the differences and see the wonderful person he is? Or will he be alone, no-one to talk too?

He pulls into himself when he is scared, will anyone try to bring him back out?

And to top it off, the one child who has continually mocked and bullied my son is going to be at this school, but I can only hope the school is onto it (which they tell me they are, for of 4 boys attending 3 mothers have been in to request this child NOT be in the same class... says it all really). To be honest, I hope this new start turns this boy around. If it does not then I have been assured he will be gone, removed from this school community. But what damage he could do in the meantime...

But now I must concentrate on my child, not what ifs.

And try to pretend I am not terrified and on the verge of meltdown.

Fragile

Reading a topic on a parenting website: What do I do about a teacher bullying my child?

A potential minefield of drama waiting to be entered. We all know as parents we can be overprotective of our little darlings, we all are familiar with that lioness roaring from within when one of our cubs is unhappy.

But seriously, if your child was being bullied (and I do not use that term lightly) by a teacher what would you do? If you had watched the reaction of other teachers at other complaints, and that pack mentality scared you, what steps would you take?

If the principal told you "Be prepared, if you follow through this will be bigger than Ben Hur..." would you still take action? Especially if they were someone whose opinion you trusted?

If you thought your child was resilient, they seemed to be coping, there was only to the end of the year to get through, they nor their sibling was prepared to consider changing schools, would you let it ride?

Would you?

And if that year of being held up to ridicule, being belittled, having the teacher lead the other children in actions somewhat resembling Lord of the Flies, if that then changed your kid into a fearful, anxious, angry child, what could you do, how would you feel?

These are people we entrust with our children's well being...

Scared, fragile, damaged. Humpty Dumpty was never put together again. EVER.

When Parents Go Feral...

Look, I of all people know there are times you have to advocate for your kid or kids. But I also know there is a time you butt out and let them work things out themselves. Some people DON'T know how to or are incapable of letting it happen.

I am sitting smack bang in a situation created by an interfering parent. We send our kids to school and entrust their welfare to the teachers on a daily basis. They see our kids in a different dynamic to their mammas and pappas, and they also probably understand the class/friend energies better at times too.

My two are off to the Grade 6/7 camp. The kids were allowed to work out there own cabins, their own combinations. We were told to stay out of it (but nicely, I'm just pissed and writing abruptly), and in all honesty, I figured the teachers knew well enough which combos could spell disaster, and the kids themselves would bring it up if it arose.

All good. Then a parent goes in, carries on, changes have to be made and boom:

one spectacularly upset apple cart.

God there are some idiots in this place.

And as I said in my conversation with the teacher, I fully recognise that they are doing their best, it is just a shame someone has to make it all so hard for everyone. And like dominoes the repercussions flow down the line... With my kids smack bang in the middle of it. Which means I now have to be one of those interfering parents and delve in and advocate for them. Not happy Jan.

Ah Yes, The Autism Hasn't Miraculously Vanished You Know...

I sing his praises so much you could be forgiven in thinking he was out of the spectrum, but of course he is not. He is doing well, so very well BUT it is incredibly frustrating when the fact he has Asperger Syndrome, will ALWAYS have Asperger Syndrome (AS), seems to be forgotten. Or ignored.

Big Boy & Boy 1 - Byron Bay
Copyright Madmother

The pressure at the moment is immense. We are coming up to the last week of third term and the work is snowballing. Why they do this is beyond me. Even Boy 2, who does the same work as Boy 1 though is in the grade below, Grade 6 (in a composite 6/7), is finding it terribly stressful. Tears of frustration are becoming the norm in this house.

Last weekend we had meltdowns, trigger tempers, tears. This week has been much the same. And it could have been avoided with a little forethought.

Boy 1 had a week off, the week before last. The whole family went down with some nasty virus, but he was hit the hardest. The school knew, because it was from school I picked him up on the Monday, green as the grass.  So he missed a week.

On his return the following week this is what he was hit with:

• Poster for his marketing/technology poster due on the Wednesday, he found out Monday afternoon. Given extension to Friday.
• Rough draft of debate due Friday - AND they put him in as THIRD speaker for the negative! WTF? Who in there right mind would do this to a child on the spectrum? Debating is hard enough, but THIRD SPEAKER? First speaker, maybe he would cope, but never in the think on your feet last rebuttal final speaker position...
• Science experiment parachute construction due Wednesday.
• Thursday off school at college orientation day.
• Assessments and class withdrawal by education department OT and also another session of assessment by physio.
• LOTE test on Friday sprung on him as he missed it the previous Friday.

Yes, I picked up a boy in tears on Friday afternoon having missed first break and part of second (thus not eating as much as he usually does - which is a part of his routine which keeps him settled).


Boy 1 Sept 2011
Copyright Madmother

 I just cannot comprehend how a school could not see this was setting him up to FAIL. There is no way possible for us to have managed or prevented such, and to be honest I really felt like letting them reap what they have sown for I feel they forget he is still a young man on the spectrum. Yes, he is amazing and doing so very well this year - so what? You want to bring him back down? You want to pull all the struggles back into the light?

And they wonder why I get frustrated with the system. The bloody system doesn't work!

Note: Big Boy and I went in first thing Monday morning. Big Boy was very proud of me for no teacher was harmed in the making of this post. Yes, I kept my cool. On the outside.

Uncontactable. And Sunday Sessions.

The bane of a parent's life.

The night before school goes back frantic book covering. The bubbles and wrinkles and unintentionable covering of oneself. I am certain there must be a condition called contactitis: fear of failure in performance of covering treasured childrens' school books. Symptons: air bubbles, wrinkles, hair or dust under final product, small cuts in plastic to free air, inability to free hands from adhesive covers, constant cursing under breath. Excessive perspiration at times.

I think it was invented by teachers for revenge. I know it must have been created in the first place by a man, for what woman would ever design such a user-unfriendly product as contact?

Aargh...

 

Time for a Sunday Session methinks. Pop on over to Thea's for the blurb.

Here's my oldie:

Huey Lewis - Stuck on You

And my newie:

Hey boys. You must know how much ya mumma loves you after this. Contact. Arrgh. Oh the pain.

Cracking The Sads.

I am going to follow Alex and take a little blogging hiatus. After a wonderful school holidays surrounded by those I really enjoy being with, the reality of having to return to a school where I have to see unpleasant people on a daily basis has hit me hard.

A new school year is difficult enough, especially the first few weeks with Boy 1, but having to deal with this nastiness... Well, it has me worried. A few weeks ago I don't think it would have phased me, but learning someone was questioning my integrity and mental health, spreading innuendo and lies... I am really upset about it. Normally if told of something like this (especially about 5th hand) I would go to the person and try to find out the truth. After all, we all know how chinese whispers can distort. But having been close to her and in her confidence I am very aware of how she dealt with the last person (deny, deny, deny), and it would serve no purpose. 

The end result will make her happy anyway, I now wonder what she has said to whom, and who believes her. I consider myself a pretty good judge of character and she had me fooled for a hell of a long time, so I do not doubt she will spin a believable speil to many.

And so, I need to take some time out to concentrate on me and mine. It may be a day, a week or a month, I have no set time frame in mind. I am not deleting this blog, merely stalling for a little.

Until I feel in a better place I cannot spend time here. It shows you how much the betrayal of a friend can screw with your life.

Big Boy thinks I need to stop wearing my heart on my sleeve, I think he may be right and I need not to care about others as much. It is too damn painful, and it can be used to hurt.



 

Back to School - The Aspie Way

After reading jemikaan's post about K's psych appointment and the preparations for first day of school I thought I'd dredge through my very iffy memory and see what where the things that helped Boy 1 back in those turbulent early days.

The first day of school for ANY child can be a daunting prospect. The first day of school for a child with Autism Spectrum Disorder can be terrifying for all. We are lucky to have had an incredible Grade 1 teacher (which here in Qld back then was where formal school began). These are just some suggestions which may help:

• First day arrange to arrive either earlier than the masses or later when the noise levels are not so overwhelming. Plan with the teacher what they would prefer. We arrived early, showed him his seat, talked him through the classroom rules, settled him and waited for the others to arrive. We also had a full time aide back then, he had already met her in the calmness of his home so she was a familiar face in a sea of confusion.
• We had created a folder full of information. Boy 1's photo on the front. Practical information on the inside. List of sensory triggers (insects, noise, smells back then), explanation of how we dealt with each. Sadly each year the new teacher chose not to read notes, preferring to make an unbiased assessment of each child. Could have saved both teacher and child a lot of angst if only they had realised. Usually a very stressful first few weeks for all involved. Not a big issue now as all know him at the small school.
• On the noise factor: ear plugs. We use the plasticine type ones which you can split into smaller for little ears. He still uses these at nearly twelve; perfect for assembly, sports carnivals, storms or anywhere the crowds are raucous. He also had those tradie ear muffs in his younger days. Was considered cool, and all the boys went home requesting them.

• Buy a plastic upright cutlery container. You know, the type that has four sections and a handle in the middle. Place velcro on the bottom, stick on corner of desk for pencils and scissors, erasers, etc. Perfect for all littlies not just ASD kids. This one was from our lovely teacher - thanks Mrs Morrow.

• Have a quiet corner organised. Somewhere the child can withdraw to when sensory overload hits. Somewhere only THEY and their supervisor is allowed.
• Have some sensory calming tools. We used stress balls shaped as a globe. Great for fine motor issues too. He would squeeze these as a sensory release.

• Have a laminated emotional thermometer on the desk. Scale of one to ten, ten being blast off meltdown. Give the child options at each level. For example when things were reaching eight for our son, his aide took him outside and he did star jumps to get rid of the tension and energy build up. Discuss with the child and let them choose the activities which help them.

• It is proven that these children, in a formal desk setting, learn more if seated at the front of the class on the right side of the board. Something I learnt at a Tony Attwood conference, and yes it worked.
• Read the Ben and His Helmet series by Nelle Frances. Perfect children's books to help the other kids understand. We even bought a set for the school. Nelle's boy is Ben.

• Colour code your subject books, you can use this for the rest of school.
• Ask the teacher how they want you as a parent to be involved. Do they want a communication book for all: teacher, parent, aide, SN teacher, SEU to utilise? Do they want a quick drop-off or do they want you to settle and calm the child. Make sure they know to pass on all issues, no matter how small they seem for other children they can build into mammoth proportions for these little ones.

• Take the opportunity to educate other parents. Don't lecture, smile, be charming, inform. Take away the fear.
• If your school does not already advocate this - ask for a buddy system. An older child - in our case it was Year seven, who can help your child, mentor them, be their friend and supporter, teach them the ways of the school world.
• Always remember that if you alienate the teacher your child will suffer. Keep the big guns hidden unless absolutely, unavoidably necessary.
• Brain Gym was a big help in our early days. Look into it - it may assist.


• WATER WATER WATER - the more hydrated these children are the better their coping skills. Explain to the teachers and staff, if it means more toilet runs, then so be it.

If I think of anything else I will edit and add. Good luck, any questions, please ask. Boy 1 is heading into Grade 6 this year, the little boy who we were told would NEVER be capable of learning has achieved much. Academically, he does well. Socially, it is getting harder as the kids' (and I must admit some parents') attitudes change.

Camp Revelations

Son no. 2

We have just returned from a 3 day/2 night camp stay with the Grade 4s and 5s. A wonderful year for me to go (DH went last year) as it is the first time both my sons have been on the same camp and this will not occur again until 2011. It has been a great learning experience for all. I am proud of both my children, they stepped up to the challenges and coped with it all admirably. Bar a few meltdowns/temper tantrums, I won't dob on who did what but I am sure you can work it out if you have read my blog previously.

I relished watching the behaviour of adults and children alike, free from the shackles of parental expectations and schoolground restrictions. The kids you least expected to cope appeared to blossom and mature, taking on roles never seen before. Others, well, lets just say I hope the parents read the letters they were forced to write to explain their behaviour, and have a little chat, though even their transgressions were minor (unforunately it was the denial and not accepting responsibility for their choices which was far more disappointing).

Son no. 1

Okay, I lied, I am going to dob on who did what...

My oldest has a bug phobia and a tick allergy, so attending a bush/farmstay camp in the middle of nowhere was always going to pose issues but he pushed his limitations and expanded his world far beyond my wildest dreams or expecations. I am so proud of him I could burst. Though we had a lot of screaming terror over March flies, wasps and ticks, he managed to rein it in pretty quickly and participated in nearly every activity.

Son no. 2 coped well, as expected, but by midday on the final day he lost it over having to wait his turn for food. He was not alone in that session, we had three incidents in fifteen minutes as most had reached the limit of their patience. Tired, hot, and with very little sleep, little tempers frayed then broke. We also had many in tears on that last day.

But it was so much fun! Even for this oldie!

I need to brag.

Ah, my boys, my wonderful boys. Last Wednesday was the school talent quest. 40 acts auditioned. 20 were chosen. 5 were in the drama/poetry/skit section. My boys performed a skit which contained EVERY TEACHER'S SURNAME in the school. It blossomed from an idea son no. 2 had whilst playing outside. With help from me, it bloomed into a slapstick comedy as follows (teacher's names in bold).

The Boys – A Play. Presented By Kool Productions
Boy 1 walks in limping, scratching and itching, looking unhappy. Boy 2 bounces in happily.
Boy 1: “Hello Barnard.”
Boy 2: “Hi Thomas! Watson today?”
Boy 1: “Not much, just tripped over an Antill. Mum says I should
Harden up, but these bites really sting. Makes me feel a bit green in the Gill!”
Boy 2: “I have a bandaid here, let me help. There, that’s a bit Cozier, isn’t it?”
Boy 1: “Knew I Lieked you for a reason. You have a big Harte. Oh no,now I’m going to sneeze… Ah – ah – Joosep!”
Boy 2: “Bless you. Got a bit of a cold? Must be from that Duncan
you took yesterday when you slipped on the Brox tom. I Todd you they were slippery. You were always Fuller it tom.”
Boy 1: “Yeah, I should have listened. Your Artz always in the right place.
So, how’s the bird watching going? Smithed out any rare ones yet?”
Boy 2: “Saw a Flock art west the othZahday. You know, you go down MacFar Lane! Oh, Sullivan, that’s Mum screaming for me. I can Kelly hear her. Better run. See you tomorrow at school, we Shul team up at sport!”
Boy 1: “Sounds good. See ya!”
THE END.

Now, it was rehearsed a few times at home, but on the day in front of over 250 parents and schoolkids one managed to become quite nervous, and although the judges could hear him, most up the back couldn't. The other performed the best slapstick the school has seen in a long time, luckily compensating for the nervousness of the other.

Hilariously (you should have seen the jaws drop, and the looks of amazement), it was not my confident, self-assured second son who shone. It was my oldest ASD son who floored the whole audience (bar his Mum up the back who knows exactly what he is capable of). And yes, they won! Even defeating the drama students! Woohoo - go the N brothers!

What a success!

I am jigging on my feet, tapping my shoes, dancin' around the room. Over $3,000, maybe (if negotiations pan out) nearly $4,000! What a night - feedback is all positive, it ran like clockwork, fun was had by all - bar two very manic organisers. Next year we aim to break the $5,000 barrier! This was the first I had been involved in, first as co-ordinator, only the second one run by the school. Last year it raised just over the $1,000 mark.

Who said little schools can't raise big bucks, who said fundraising had lost the FUN. All you need is a small, good bunch, no politics, plenty of laughter and wine, and no prima donnas! This is how it should be - and look at what we have achieved! Woo Hoo - watch out for the 2010 Trivia and Fundraising Auction Night! Bigger, better, higher returns!