Frustration is the Ordinary Life

Today is a day of frustration.

Instead of dropping both our children off at school and coming home to deal with my own health and disability and career, I am trying to organise and facilitate my children’s education myself.  Now I love the idea of homeschooling, and especially unschooling.  I think that these are the best ways for our children to learn, in an ideal world.  However I do not live in an ideal world and my family simply does not have the energy or tools to do full on homeschooling or unschooling.  Unfortunately, while Distance Education has it’s supports, they are not fully supportive.  It is not “school at home” per se.  As a home tutor I still have a lot of responsibility.  Mostly being awake, which is more challenging than it might seem when my thyroid goes and throws a tantrum.  But also being there while my kids are at their online lessons, and doing an extraordinary amount of homework, including things which require special equipment (I need to go shopping, even when I physically can’t…), and special places (“go somewhere where there is sand…” – umm…  wheelchairs don’t do too well on sand and I’m not walking at the moment).

Education is a huge issue in our house and I still don’t know how to fix it.  All “at home” options require too much from a body that can’t even look after itself, and mainstream simply refuses to take my children’s disabilities seriously.

Never mind that my eldest doesn’t want to learn.  He makes negative noises every. single. time. we try and get him to do something in relation to school.  Every. single. time.  And his negative noises make running your fingernails down a chalkboard seem like the subtle tones of a rainforest setting.  Every time he makes that sound, my whole body reacts.  Contracts.  And then wants to lash out.

Every day, every lesson, we are cried at and screamed at.  School is boring.  He hates school.  He hates us.  He is sore, tired, hungry – anything!  Everything.  Kicking.  Screaming.  Literally.  And then he just refuses.  No.  I won’t.

You can not force a child to learn.

This is the second week of school and my youngest doesn’t have even have his password working yet.  That whole situation is just past annoying and goes into hilarious.

We need supplies, but I am too sore and sick to go shopping.  There is no one else that can do this for me at this stage.  At any stage.  We will just have to go without for now, and fail his class.  I can’t afford to get everything at once and order in advance.  Plus, it’s impossible to say for sure which activities the teacher will insist on, and which are only for those not attending the scheduled online lessons.

The assumption is that home tutors are not disabled.  Or at least, not “disabled”.  That is, not disabled in a way that actually stops them from doing the things they need to do in life.  Some people are disabled but not “disabled”.  Sadly, I am both…

And I am fucking frustrated.


(Please take note – I have received, and continue to receive, a plethora of “advice” in regards to this situation.  For some reason, people assume I am an idiot or that they know my family better than I do.  I am not, and they do not.  We have explored all our options.  The only option that would work for us is a private tutor at home, paid for by someone that is not us.  This is NEVER going to happen.  No department will pay for this.  No charity will pay for this.  If you think they will – then YOU organise it – so that you can see just how the “system” works, instead of putting your Polly fucking Anna spin on things to make yourself feel better while simultaneously making me feel like shit.  Please do not insult me by offering advice.  I take offers of chocolate, ice cream, a shoulder to cry on.  But in this department of our lives, I do not need advice.  Thank you).


Disability consumer and activist since 2010. Mad as a hatter since way before that.

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Posted in Disability, Personal
3 comments on “Frustration is the Ordinary Life
  1. Sabrina says:

    Im reading you from Paris and wanted to offer a shoulder to cry on ! 😜I know what it is to be exhausted by a physical condition and neverending day to day struggle . Escuse my question i havent been through all your
    Post ( nooo jugement here !) the school option is not possible bécause of’autisme ? Take care

  2. Hi there and thanks for commenting 🙂

    Mainstream school is not an option mostly because of Autism – my kids are not eligible for “special school” because their IQ is too high, and there are not enough teacher aides to take care of them properly. They are bullied, then blamed (i.e. “they wouldn’t bully you if you didn’t do a, b, c”…). In class, things happen that they do not understand, or they take things too literally etc, and as there is no one to help them, they just fall behind and/or the teacher believes they are misbehaving etc. There are a thousand reasons.

    But the one that scares me the most is that no one takes their Ehlers Danlos Syndrome seriously. They are made to walk when they are tired, which can cause long term damage. They are made to RUN when they are tired, which is so much worse!!! They are not believed when they are injured because it is not a “normal” injury.

    And they can injure internal organs. That scares me not so much because they might, because the chances are mighty slim that they will, but that IF they do, the teachers and school administration will not recognise what is going on because they refuse to read the information I give them to prepare them. Nicky had a teacher last year who took two weeks to read this information – it was only 2 pages long. 2 pages, and it took him two weeks to read it, despite the information possibly saving my child’s life one day.

    I am beyond pissed off with the school system. I don’t like them, and I sure as hell don’t trust them. They are no longer getting their hands on my kids.

    Thanks for the shoulder 🙂 I appreciate it!!!

  3. Sabrina says:


    Got you , I havent realised that they had this condition too.

    Its pretty tough but you seem’ to be handling well things isnt IT what we do best mums , hzndling things ! Take care
    Take care

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

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