Be patient. Be kind. If you cannot, say nothing.

Master J is struggling.

Exams are looming and English is proving a bigger problem than we ever imagined.

The limitations of autism are increasingly evident.  Things that come naturally to us neuro-typicals are an enormous struggle for him.  Language, with all of its complexities, its nuances, its foibles, pass him by.  He lives in his own world, communicating only when he has to.  Now he is being asked to analyse language, explain why it is being used, to what purpose, and in what manner.  He is being asked to understand the context, the depth and hidden meaning in a body of words that simply swim in a sea of black and white.

Did I mention exams are looming?

Stress.  Big, clumpy, heavy stress.

This morning:

I’m not going to pass Mum, I may as well just leave school

I brace myself.

Only a year to go, love, and then you have finished school.  And that is when the real fun begins.  You get to follow your dreams, your curiosity (my new buzz word), whatever you want to do, you get to do that.  No more English, no more analysing language, no more of any of that stuff.

I fucking hate English.

Frustration.  He thinks I don’t understand.  He is in pain and I am not telling him anything that is anaesthetising it for him.

My heart breaks.

“I had a lunch planned love, but how about we spend the day at home, going through some things. It might help ease your mind.

He is reluctant, resistant, but nods.  Moments later he is screaming and ranting and struggling to contain the anxiety that is welling up inside of him.  We know to leave him alone, to let the rage run its course.

I shoot off an email.  It is a lunch with a bunch of woman I have never met.  With Master J finishing school next year I recognise the need to let him go, get out and meet actual real people.  This is my first attempt at that.

Sorry ladies, unfortunately something has come up and I won’t be able to make it today.  Have a great time and I will see you next time.

It is 8:30am and the lunch is at 1pm.  Short notice, but unavoidable.

I receive a message at 10:30am.  It is from one of the ladies going to the lunch.

“Something has come up” is a poor excuse, I am told.  If I can’t make it at such short notice, I do need to give a decent excuse.  She doesn’t want to sound harsh, she tells me, but the lady organising it must be feeling very let down.  She signs off with “hope you and yours are well”.

I stare at the screen.

My initial reaction is to simply write Fuck You Bitch!

But then, just as she doesn’t know my circumstance, I don’t know hers.  She may be a really good friend of the person who organised the meet, and this friend may have been let down by many people in the past.  She may feel the need to defend this friend.  Like it is her duty.  Or something.

I do shoot off an email.  It isn’t as gracious as I would like.  Frustration is evident in its tone.  I point out that after being reprimanded like this without even meeting me, how on earth could I possibly attend another meet up with any modicum of dignity.  I would feel like I was walking into the lion’s den being labelled as the one who let them down without “giving a decent excuse.

So my lesson for today is this:

Be patient.  Be kind.  If you cannot, then say nothing.

Much love,

SHW Signature AmyG Font

 

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16 thoughts on “Be patient. Be kind. If you cannot, say nothing.

  1. Oh my goodness. This world is so crazy that some people really forget their manners, don’t they? I’m sorry you encountered that when you were just trying to do the right thing by your son. People should be able to read into the niceties of ‘something has come up’ and understand that it must be something important, or you wouldn’t be cancelling. Sigh. But maybe that’s harder to do when they don’t know you well. I’m sure if they did they would have known that there must be a good reason.
    Hang in there, when the timing is right you will have no trouble finding your people Sarah. They will be there, just get through what you need to get through now. I hope exam time passes swiftly, like the ripping of a bandaid. Painful, but fast. Thinking of you during these tribulations!

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    • Hey there Rach. I was angry to begin with, but soon brought it into perspective. The impact on me was very little. She responded defending her action and thanking me for providing a more acceptable reason (really!). Our son will get through his exams I am sure, but unfortunately not without some considerable stress. I am so saddened that with all the talk of diversity and inclusion the reality is that on the ground it just isn’t so. We still continue to put people who don’t fit the “norm” (and how I hate that word) into our boxes. It’s frustrating, but hey, it gives me purpose, HA!

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  2. Such good advice and I cannot hear it often enough as sometimes in the hustle and bustle we can forget. I hope that your son keeps on. I hope that your patience lasts long. Don’t worry about that lunch. xx

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    • Hi Dani. Thank you for popping by. I must admit, I was so angry when I first received the message, but in the grand scheme of things, I realised that the impact she has on my life is zero. My son, on the other hand, is impacted every day by a system and the enforcers of that system who refuse to adapt. But that is a different fight for another day. xx

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  3. Oh my goodness Sarah – I am sorry but I would have gone with the ‘fuck you bitch’. Absolutely ANYTHING could have happened to make you cancel and therefore that woman’s response was irresponsible. She could have pushed a distraught person over the edge with that – the straw that broke the camel’s back etc. I haven’t explored your blog yet (I will after this comment), so I don’t know what country you live in. I am in the UK and before I left journalism, I studied part-time to understand ‘barriers to learning’. I was so angry with what I found that I left my writing career to work with young people who were said to have ‘learning difficulties’. I continued studying while working and gained a lot of knowledge from both my studies and the young people I worked with. I worked with many autistic children between the ages of 7 and 18. My experiences left me feeling completely defeated on their behalf. These young people are completely misunderstood by ‘normal’ people and any attempts made by people like me to fight for their rights are met with hostility from people within the system, which is geared towards the ‘normals’. What a joke! I would love to say so much more here but I think I will save it for a blog post dedicated to your son and all those square pegs that society insists on bashing into round holes. It is diabolical and I am so sorry it is still going on. To force a young person to approach an exam he is not neurologically equipped to grasp the way others can is like asking a paralysed person to climb a flight of stairs. There are laws (in the UK) that are meant to prevent disability discrimination and yet children with autism don’t seem to be protected by them. I so hope you son does not continue to suffer the way you describe (and you too) – it is just plain wrong and it is mainstream society that needs to change its attitude – not those who have brains with atypical wiring!!!!! Grrrrr – it makes me SO cross. Can you guess? 🙂

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    • Hi there Gilly. Thank you so much for your comment – on so many levels! For making me realise my anger wasn’t misplaced with that woman, for understanding what my son goes through each and every day and for recognising what parents go through, fighting a system that refuses to even attempt to understand them. All efforts in this world seem completely geared into pushing them into an archaic 60 year old system that leaves them with so little self esteem. In fact, you have spurred me on to write my own post too. Thank you, very very much xx

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      • So glad I saw this and am looking forward to your next post on this. Not sure how I will approach mine – I still feel guilty for walking away from education. I got tired of the fight with ‘professionals’ who refused to even try to understand differences in thinking. But the youngsters who struggle in such a narrow minded system need all the advocates they can get and I worry that I should still be fighting for their rights in schools. It’s posts like yours that remind me how bad it is for the children and then I wish I had stayed longer and fought harder. I have resisted writing about my experiences education but maybe now is the time…

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        • My sons’s school is headed up by someone who is exceptionally institutional in her approach to education. I am unfortunately one of “those” mothers that teachers cringe when they see coming. But in truth, if I hadn’t been one of those mothers, my son would not be anywhere near approaching getting through school and excitedly looking forward to a university education. Last year, he had one teacher who utterly pushed out the limits for him and it made all the difference. She was let go suddenly because she was steadfast in holding the school to account for how these kids were being educated. It’s tiresome and backward thinking, but we can’t give up. At times I have to recite the Winston Churchill “we will never surrender” speech to myself to spur myself on, HA!

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  4. My dear, Sarah, I feel so awful that your son has to ‘fit in’ to a system that’s not made for him. I am surprised that this happens in Australia. Don’t they allow for subjects to be skipped?

    I can only begin to imagine how painful it must be for you to see him struggle through this. Hugs….

    About that ladies email, I made me think of the times I might had judged someone else, when I didn’t know the whole story, as she did. Thank you for the reminder to stay kind.

    PS: I would have second thoughts about going out for a lunch with a group of ladies like that. I’ve done it before – compromising on the company I keep because I felt the need to ‘get out there’. Finally, it ended with a big showdown, because I couldn’t keep compromising.

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    • Thank you Corinne. Unfortunately individualised education for children that don’t fit the mold is very lacking. I agree with you, I may try to find someone else to lunch with 🙂

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  5. I hear you loud and clear. Perhaps the school needs to sit down with J and work one on one with him; give him mock answers to the type of thing that might come up in the exam? We ended up in counselling over maths with our ASD kid and the school has thankfully let him drop it after year 11 (he passed with 63% and university entrance in it!) and he is now in his final year of English in year 12 – it is hard when they can not read a person, let alone a piece of english work to decipher. He did surprise everyone with 90% in Eng. Lit and 73% in Eng.Lang but the school worked over and over with him. He is on study break now and has been back into school to work with teachers and was also in at school being helped during the sch hols. Schs do need to stop being so damn pedantic with our kids – I basically hugged them when they told me that no kid needs more than a year 11/12 (NZ finishes in year 13) maths education unless they go onto a degree which requires maths. The flipping anxiety we went through for many many years around maths is over!

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    • Hi there Kimberley. We have repeatedly asked for extra help for Jordan and frankly, nothing has been offered. I repeatedly meet with them only for them really to try to insist that J be shoved into some form of conformity. English is a prerequisite for a VCE qualification, so it is not an option to drop it. Just this last weekend I emailed his English teacher for some assistance for J for an upcoming SAC (assessment test) carefully explaining how autism works and affects their executive functioning. Nothing. It is an ongoing battle, I am afraid. Thank you for your commiserations though – they are much appreciated xx

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  6. I think most people realise that a mother’s number one priority must be to her child. On the flip side, I have organised things before and had pretty much everyone pull out at the last moment (just a random and unfortunate series of unrelated events) . I suppose there are always two sides to every tale and helluva lot of ice under the tips we choose to show. I think it’s always best to err on the side of kindness.

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    • Me too Robyna. I have also had people pull out from things and had parties where almost no-one turned up. It’s a tough one, but I guess I wouldn’t dream of contacting a stranger and giving them a piece of my mind. But that may just be me and my somewhat reserved UK upbringing 🙂

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