Validation for Nicholas!!!

Ordinarily I only have bad news to share.  Life can suck that way.  Today I have great news to share.

I received a phone call at 6:30 tonight from the head of the Support Centre at the kids school.  She apologised for calling so late, but said this is the first chance she has had all day to phone, and she couldn’t wait until tomorrow.  I told her that she was free to call us any time.  My kids always come first.

At first I was apprehensive and scared – I thought that maybe Nicky was in trouble, or had done something wrong, or something bad had happened…

As some of you are aware, Nicky has been bullied at school of late.  He had all of last week off while I attempted to try and think of a solution (plus I was rather frozen in an Autistic way myself, unable to pick up the phone and call).  I eventually text the head of the Support Centre, K, and let her know what was going on, and she got in touch with the principal who called me first thing Friday morning.  We had a long chat, then she organised for one of the school counsellors to call as well, and set up some starting solutions to get the boys back at school (Quinn was home as well, though for different reasons).  One of those solutions was to start Nicky off at the Support Centre until he felt safe enough to go back to his classroom.

So yesterday, Monday, Nicky was at the Support Centre all day, and one of the projects he had to do was make a poster.  He worked on that today too.  He also talked to K about his programming, and she suggested he bring his computer in so that she could have a look.  Today he took his computer in and showed her the work he has been doing on a program he designed to help Quinn learn his times tables.  He also wrote a program in front of her to make a box appear saying “hello”.

In this house, this is pretty basic programming, but K thought it was a big deal, so she went and asked the IT guy at school to have a look with the intention that he might be able to work with Nicky on some programming stuff.  He informed her that what Nicky was doing was high school, if not university level and that he was himself currently learning this stuff at university!  So sorry, but no, Nicky was beyond what he could help with.

K also went straight to the principal and informed her of Nicky’s ability.  An impromptu meeting was called with the principal, the vice principal (as the principal is going away on long service leave next term), and a few other people, including K.  Phone calls were made to various places, trying to find out what can be done to help Nicky with his studies, as apparently none of them have dealt with a kid like this before.  K said she has dealt with 2E* kids, but none at this level.

(2E, or Twice Exceptional, means a person who is gifted as well as having a learning disability, such as Autism).

So we have a meeting tomorrow to add in our thoughts and get some more information.  The school is trying to get Education Queensland on board as they will then continue with Nicky through to high school and keep that continuity going.  The school is also going to liaise with the high school Nicky will be going to next year to make sure that he has an appropriate programme – as Nicky doesn’t test well, there’s no guarantee that this will be an automatic thing.

There was talk of Nicky doing some high school subjects as well as possibly even university subjects in the very near future.  They are also going to fight to try and get him a one-on-one tutor…

K was looking at Nicky’s poster today and had another realisation – not only is he disengaging because he is so bored, but she saw him take a passing comment as a personal insult.  She mentioned that he paraphrases his work, rather than just copying and pasting like all the other kids do.  “I don’t DO that,” he replied lol…  She realised that the staff have been treating him like the other kids at the Support Centre – that he is probably constantly thinking “why are treating me like an idiot?”  He is getting in trouble and people aren’t telling him why.  He is bored, and they aren’t understanding why.  And because he is still Autistic, but in a gifted way, he tends to take simple comments personally and we all need to work with him on that.

All of this – the realisation that he is so smart (smarter even than I have been giving him credit for I think), the realisation that he is disengaging, the realisation that he doesn’t test well, the realisation that it’s going to bother him to treat him at a lower level than what he is – I am SO glad that someone has finally noticed.  I mean, I can tell them all I like, but in a system that is set up to only look at test scores with a kid that doesn’t test well – and with all mums thinking their kid is the greatest – I can yell as loud as possible and no one is going to hear me.

Well, someone has heard HIM now, and they are so excited, they are calling me from their home at dinner time lol…

As I said, the school hasn’t dealt with a kid like him before, so they are calling everyone they can think of to try and come up with the best way to help him.  If you have any ideas, please let me know!!!  This is obviously very new to us too.  We have put him up a grade before, but he had to go back down when he didn’t learn anything while being homeschooled.  There was an issue then – because he essentially missed out on a years worth of work, he was expected to know things he didn’t know, for example, all the kids had learn their times tables, and he still didn’t know what multiplication was.  I explained it to him, and he was fine after that, but this issue will be larger now that he is older and I’m not sure how to deal with it.

Everything is up in the air at the moment – it is going to take a few weeks (especially with school holidays starting next week) to get anything sorted.  Finally though, they get it.

Yay!!!

Posted in Uncategorized

Frozen…

I’m totally frozen in place today.  Barely able to move.  Snuggled in blankets and manoeuvring to as close to the fatal position as possible as often as possible.  My Myoclonic Jerks have come back, despite the medication I am still taking to keep them at bay.

I am stressed.

My youngest son is scared of dying.  He has “bad thoughts” that he “wants gone” before he will even consider going back to school.  He only feels safe with Mum.  Given exactly how upset and scared he is, and taking into consideration the circumstances of his older brother, I’ve been inclined to allow him to stay home until such time as we can see a professional and try to help him.

My oldest son is being bullied at school.  He is being hit and kicked by the boys, and taunted continually by one particular girl.  He has had a roll of connector felt pens bashed over his head.  Other things have been thrown at his head (and connected).  

His teacher keeps making comments that attack his self esteem and blame him for things that are out of his control.  It is obvious she does not understand Autism and has no desire to learn.

One boy has been threatened with suspension, and the principal has addressed the class in regards to bullying being unacceptable.  It didn’t work.  We have to bring him home three times due to major physical assaults; one of those times was after the lecture.

I don’t think the school knows what to do.  In a day and age where parents no longer take responsibity for their kids actions, if you pull parents in to discuss their kids behaviour, you are more than likely simply going to end up the victim of verbal (or even physical) abuse yourself.

So where does that leave us?  Should we segregate our child for his safety?  These attacks could end up killing him.  He has Ehlers Danlos Syndrome.  His body isn’t like the body of other kids.  Besides –  Why should he have to do his work on his own in the Support Centre because other kids misbehave and break the law (yes, what they are doing is actually against the law and as they are over ten years of age, they could be charged if the school ever had the balls to make it happen)?  Changing schools isn’t an option as the schools here have catchment area caps – if you are not living in that area, you can not join that school.  We have tried and failed at homeschooling…  We can’t afford to move.

What else is there???  If we keep him home much longer, my income support will be cut by the government due to “truancy” of my kids, and I run the risk of them being taken by the state…

What the fuck do I do?  I am so stressed I can’t move any more.  I physically can’t move.

It’s not like our life wasn’t a cluster fuck of drama before.  I had enough going on as it was, I didn’t need this shit.  My kids didn’t need this shit.

What the fuck do I do?  When you have no options left, what do you do???

Posted in Uncategorized

Thank you – to all three of you…

I was going to post this on Facebook, and tag each of you, but that seemed a little attention seeking and I don’t know who your friends are or what they might think…  Then I thought of addressing you but not tagging you, but that too seemed a little attention seeking and I’m still not sure I want this to be to you in a specific way.  For some reason, that just doesn’t seem right.

I did want to say something to all three of you though…  I want to say thank you.

See, today I went to volunteer for an organisation, and they require two referee’s…  At first I thought “it’s been a while since I’ve done the “Better Access Campaign” and my reference from the leader of that campaign is a little old – plus it’s a reference and not a referee – he may not even remember me these days!”

Then I thought (admittedly, after a while), “hang on, I do know of a few people who I have helped over the past few years, and who I am still friends with, and one of whom I still help from time to time when my family obligations allow…”  And that is the three of you.  So if it is ok with you, I will put your names down as referees…  Don’t worry, I will ask in person first…  If I decide to go ahead with this volunteer thing – I’m still wondering if I can actually take it on with all the crap going on at the moment at home, which along with my studies, is taking up most of my time and energy.

I also thought though that I wanted to thank you.  I wanted to thank you for doing what I one day hoped to do yet never could, which is found a movement which actually makes a difference.  I’m going to be completely presumptuous and thank you on behalf of all the people you help with your efforts, whether that be advocacy, or on the ground physical help, or whatever it is you are doing to help your community.

You are three of the best people I’ve ever had the privilege of knowing.  I’m so incredibly proud to call you all my friends.

I want to thank you too for allowing me to help in whatever capacity I can, without any guilt trips when I can’t live up to doing what I feel I should.  I want you to know that I hate the fact that I can’t make any firm commitments.  It kills me, and so the fact that none of you have ever even mentioned my backing off my “duties” means the world to me.

So in short – thank you for just being awesome.  You all rock this world, and you all make it a much better place to live in.  I hope you see in yourselves what the rest of us see in you.

Linda.

Posted in Uncategorized

Failure to Launch…

 

Purple Owl with writing - Failure to Launch

Purple Owl with writing – Failure to Launch

 

So it’s taking me half an hour to get my computer to work each time I try to get on it of late… but that’s not why I haven’t been writing…

And the whole family has been sick this year, including many hospitalisations… but that’s not why I haven’t been writing…

And we have normal (or even abnormal) business of life stuff going on… but that’s not why I haven’t been writing…

I’ve just had a failure to launch…

I just had a dream – I am at school as a student again (though my current age lol), and I realise two of my classmates have received these invitations to Sydney to attend a writing event.  An event for students of high caliber.  An event with limited spots I imagine, perhaps.  Hopefully.  For at least that would make me feel a little better about being thus far not only not invited, but completely ignored altogether.

So I pack up my school books and go to leave.  As I’m leaving another student lets me know the teacher has something for me, but I ignore them, feeling too hurt to deal with anything.  I know there’s no invitation for me.

Alas I am wrong, and the teacher catches up to me to hand me an invitation.  It’s not a Sydney invitation though – it’s an invitation to a local event – a consolation prize.

I storm off, thinking, believing, with all my heart, that goddamn I’m good enough to go to Sydney, if only I was given a chance.  After all, I’ve been too sick to attend school and the teacher hasn’t even read any of my recent stuff!

As my indignation grows, my inhibition shrinks.  I start screaming, informing everyone that if only people would listen, truly listen, to others, that we would all get along a lot better.  That if only we could give each other a chance, then those of us continually pushed down could get up, and have our turn to shine.

I woke up to my cat scratching at the door.  No doubt my little tirade could have gone on for a while – I have a lot of anger and disappointment and angst in me at the moment.  This blog is the first thing I’ve written all year.  I had such high hopes and plans and as with each year before, life just keeps interrupting.  And my life interruptions aren’t cutesy, like normal life events, but tragic shit, like being in hospital, or being in too much pain to move, or whatever.

I’m not sure that the dream really represents how I feel about my writing – I’m also having problems with how the school is treating my eldest at the moment, and I’m not sure how to deal with those issues.  In any event, even if it’s not a direct cause, the dream has certainly made me think of my writing and where I’m going and where I want to go and how I feel about it all.

And I do feel like screaming from the rooftops.  I feel like screaming that I’m goddamn good, and I’m worth the time to get to know…

Not that it matters I guess.  As in my dream, I’d only be screaming to the wind, and it doesn’t care either.

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Posted in Disability, Personal

2015 in review

This is pretty cool – I mean, I write my blog for me, not for fame or money – so stats aren’t usually something I care about.  Which is good because mine suck lol.  But the whole report thing is cool 🙂

Thanks for reading!!!  Maybe 2016 will be more literary for me 😉

 

The WordPress.com stats helper monkeys prepared a 2015 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 2,700 times in 2015. If it were a cable car, it would take about 45 trips to carry that many people.

Click here to see the complete report.

Posted in Personal

Personally Falling…

Trigger Warning: Detailed Self Injury ideation.

Purple owl with black text saying "Personally Falling: I'm lost in my own shame of being me".

Purple owl with black text saying “Personally Falling: I’m lost in my own shame of being me”.

 

No one wants to hear the ugly truth.  Least of all at this time of year, when we are all supposed to be merry and bright – or at least pretending to be if we can’t actually accomplish the feat itself.

Mind you, no one ever really wants to hear MY truth at any time, or so I’ve been led to believe.  I’ve grown up knowing my truth isn’t important, isn’t valid, isn’t even “true” in the eyes of others.  And by that, I mostly mean in the eyes of my mother.  It’s hard to believe you are worthy when your own mother hates you and everything you are.

But this is about the now, not the then.

I used to self injure on a regular basis.  Daily.  Weekly.  Different levels, different times, mostly on my arms due to factors of both pain and ease of access.  And there’s something… primal?… in hurting yourself on the arms…  It’s hard to explain a feeling that reaches deep down inside your core.

The last few months I’ve been needing to self injure again.  For a couple of months, I smoked instead, hoping the feeling would pass.  Smoking gives me a feeling of “hurting myself” that isn’t the same, but makes do in a pinch.  It also feels a bit bad ass which is good for my soul in general.  Unfortunately though, while I’d be a happy smoker if I had only myself to consider, I am a mother, and I’ve never wanted to be a “smoking mother”.  I never wanted my kids to grow up with that.  So I quit after a while because I just had to.  And the urge to self injure came back to its full force.

For the last couple of weeks, I have imagined myself cutting.  I’ve planned it.  At first, I would go to bed and sleep, so the feeling or opportunity would pass.  Lately though, I’ve stopped trying to wait it out and instead waited for that opportunity to arise so I can disappear and do my thing.  No such moments have come to pass however, and so the feeling keeps growing and growing.

Last night in my dreams, I cut half my arm.  One cut after another, trying to accomplish a feeling of peace that never came, and so another cut and another until I just gave up.  My dream continued the whole night with those marks on my arm, mostly covered by a long sleeve shirt so no one but I knew they were there.  Everyone in my dream hating me, or just tolerating me, just like I feel things are in real life.

I don’t want my kids to grow up with a mother who cuts any more than I want them to grow up with a mother who smokes.  Yet that urge!!!  That urge to punish myself for being me.  It’s all-consuming.  Impossible to stave off completely.

I know why I’m feeling like this.  Some reasons are personal and not up for public disclosure.  Others are trivial (I don’t have a job, and my kids didn’t totally like all their Christmas presents, not to mention there was nothing for me under the tree except some chocolates from my support worker).  Others are just pathetic (it feels like nobody likes me sob sob).  In relation to, and despite of, that last one, the one I think is the most relevant at the moment despite its pathetic nature, I don’t need anyone to tell me they like me.  I don’t need platitudes from people I’m probably never going to meet in person.  I need real, honest to god, friends.  People who I can go and visit on a whim, just turning up with no notice and treated as part of the furniture when I arrive because it doesn’t bug them AT ALL.  People who turn up at my place whenever it fancies them (and often enough that I don’t start to wonder whether we are in fact friends any more).  Someone who calls me their sister and means it.  Shows it.  Invites me to family gatherings.  Someone who goes out with me and does stuff.  Who knows what I want for Christmas even if they can’t afford to get me anything (or who takes my husband shopping!!!).  Who understands my limitations (e.g. I can’t make phone calls, even though I can talk on the phone, and I rarely do birthdays, because I often forget, so I just do Christmas instead).

I want some close friends.  It’s no secret my family hates me for the most part (and the rest don’t understand me one iota).  And my husband and boys are great, but aside from being male (they like computers, not pedicures, damn it), I need more than just my immediate family.  My husband loves me because he just does.  My kids love me because I grew them.  I need more.  I need girl friends.  After all – I can talk to my husband about anything, except my husband!!!

Right now, I just feel evil.  Not worthy of anything good.  Only worthy of bad things, like pain and scars and tears and fear – perhaps even death.  I’m lost in my own shame of being me.

And that is why I haven’t posted anything here for a while.

Tagged with: , ,
Posted in Mental Health, Personal

If Only People Knew – Employment

I just woke up from a power nap…  I had a dream where someone had coerced the manager of a hotel to interview me for a job in reception/management.  I went to the interview and flirted in that job interview the way I have been known to do (ie be rather cheeky and confident), and I knew I had the job…  The place was great – there was a club so you can hear music playing and I love office work!  The manager and I got along really well and I organised to start next week…

And then I woke up.  And was devastated.  Not only knowing it didn’t happen, but knowing it might never happen again…

I wish more people could feel that, so that they know what it’s like.  So that they know I’m not just lazy.  So that they finally fucking get it.

I’m sick of that attitude.  And I’m sick of feeling like – no – KNOWING – that society in general feels like people like me – people on welfare for whatever reason – should only get enough support to survive.  Not to live, just to survive.  I’ve been told by someone that people like me should only be allowed to purchase fruit, vegetables, bread, milk and basic meat with our pension.  Forget any other food, like steak.  Let alone seafood.  And don’t even dare suggest we might be entitled to the odd holiday or day out!!!

(My family is going on a holiday in November.  Respite used to pay for a couple of days away every year or so but they’re not allowed to any more.  So we have saved up.  But I’m scared to tell anyone!!!  I’ve told people anyway – even put it on Facebook – but I braced myself in case I copped flak for it!).

I didn’t ask for this life.  Yes, there are good parts, even great parts, and yes, I know some people are jealous of those things.  Having the time to do what I want.  Spending all day with my kids.  Having the opportunity to homeschool (even though it wouldn’t necessarily be our first choice).  Plus more…

But there are bad parts too.  Pain 24/7.  Medical issues and disability issues and the constant research and worry and appointments.  The operations and procedures.  Knowing my kids will most likely never have a normal life.

People don’t consider that part into the equation.  They just want me to feel guilty for not working.  And because of the way I was brought up, it’s working, to the point of this…

So I wish they knew.  I wish they knew how badly I want to be able to work because I used to love working!!! 

And I don’t know if I’ll ever be able to again…

Posted in Personal
Pissed off since 1995. Mad as a hatter since way before that.

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Photo's of our Aspie House life!
Today was the fifth day of our little heatwave, with temperatures reaching the mid thirties again!  The heat makes me very unwell, especially as we don’t have appropriate cooling at home, but Thursday’s are my big day out, with volunteering in the morning, then going out with my support worker in the afternoon (all of which involves being in places with decent air conditioning). Today, we decided to go for a swim in the late afternoon - this was taken as we arrived at the beach.  It was surprisingly calm, considering the storms brewing all around. #HadAGreatDay #NoFilter 🏖 ❤️ Reading with my little man ❤️ #Reading #SoCute #Snuggles Having a coffee and cherry slice! #NomNom
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