This is very much the article I’ve been putting off writing. I’m sure there will be a backlash. An air of ‘you shouldn’t have said that…’ I’m tired though, I’m exasperated, and I need these words out of my head. For my own catharsis if nothing else.
Every single day, my high functioning autistic eldest daughter Polly bullies her younger brother and sister, and her behaviour is tearing our family to shreds.
People ask me if I think our lives would be easier without autism in it, and my honest answer is: YES I DO!
I know I shouldn’t be saying things like this.
I should say that we’re grateful and blessed, then go on to tell you all about the wonderful qualities that autism brings to our world. It would be nothing more than barefaced lies though. All I can think of is the strain that autism has brought, the pressure it has placed upon our relationships. I’m loathe to use the word blame, but so far autism hasn’t brought us any happiness.
I can only live in hope that one day it will.
Now don’t get me wrong, I genuinely couldn’t care less what society thinks. No, really I couldn’t. If someone gives me a look in the play park because my kids are kicking off, or a so-called friend is unsupportive because of a disagreement at a play date, then it’s water off a ducks back. I feel for my neighbours sometimes because of the noise levels, but that doesn’t keep me awake at night.
What I care about is the misery going on inside my four walls
Polly’s autism is completely invisible to most, and the way it manifests itself is when she feels overwhelmed for whatever reason. This time last year, the biggest cause of stress and anxiety for her was school. So we removed it, and have been home educating her. Although she is a ‘different child’ in many respects – calmer overall, has a fraction of the meltdowns that she used to, and sleeps much better than ever before – unfortunately one thing hasn’t changed. It’s the biggest cause of unhappiness in our family, and seems to be getting worse as the months pass.
The way she treats Clara (4½) and Freddy (2½) is appalling.
We have invested so much time in trying to equip Polly with coping mechanisms. We know her meltdown triggers, and how to stop them in their tracks. We know the people who bring out the best in her, and the people she should avoid. We have a diet so squeaky clean most of the time, it makes us seem saintly to our friends. Everyone comments on how well she is doing, and the truth is, in most areas, things are going swimmingly for her.
There is no way to dress this up.
When Polly is frustrated, or angry at life, she abuses her siblings
She lashes out, destroys their games, throws hard toys at their heads. She becomes unjustifiably indignant when they don’t want to play with her, which more often than not sparks off another round of violence. The kicking, the hitting, the throwing. The blood curdling screams that make my ear drums feel like they are about to explode, and my head feel like it’s going to split open.
It’s not constant, as it was once was, and my children are capable of playing together so beautifully it makes me want to weep, but the outbursts can come out of nowhere, and leave us all totally shell shocked. It’s worth mentioning that Polly does not behave this way towards anyone else. She is adorable around her friends, and takes care of their younger siblings. She would never dream of hurting them, she has told me this herself.
If she can control her violent urges around friends, why can’t she show the same constraint around her brother and sister?
We’ve tried all the tricks. Going to the little ones and ignoring Polly’s behaviour, but she cannot handle being ignored, and this makes her lash out even more. We’ve tried giving her immediate consequences, but she doesn’t seem to make the correlation between what she’s done and what happened next.
I know my own behaviour doesn’t help sometimes – I lose my temper and shout, so does my husband. We are prone to getting embroiled in negative cycles, feeding off each other’s frustration and showing an awful lack of empathy towards each other. It’s no secret how little sleep we get most nights, but this is no excuse. Ultimately we know all the things we should be doing, but it’s not always possible to stay calm and do them. We’re not blameless by any stretch of the imagination, but we are also not robots.
I wonder how any marriage survives small children, let alone autism.
I had a breakthrough with Polly the other day, after yet another incident, after everyone had calmed down. She told me outright that she doesn’t like seeing her sister being so happy, because she feels that she isn’t able to be that happy herself. My heart actually broke a little bit, because I have suspected as much for a very long time now.
What on earth are we supposed to do with this information?
When your younger children suffer because of your eldest
In the midst of concentrating so much energy on Polly, our younger two have suffered massively. A lady at the nursery Clara and Freddy went to briefly told me that she also has three kids, her eldest being autistic. They are adults now, but she said looking back it feels as if the little ones had to bring themselves up. Her words caught in my throat and brought tears to my eyes. I willed myself not to cry in front of this woman who has so visibly been hardened by life’s challenges.
The truth is that our once carefree, happy go lucky four year old is broken at the moment. She is unable to cope with her sister’s meanness. She screams and throws and hits and kicks. It can feel at points that she has forgotten how to play with other kids. If she’s upset she will have the mother of all meltdowns, in front of people or in private. She doesn’t ‘hold it together’ like her sister does.
Clara has gone from being our best sleeper, to refusing to go to bed until both Polly and Freddy are asleep. I’m convinced that it’s because she knows it’s the only one on one mummy/daddy time she will get that day. We feel the only chance for her to get some respite is to send her to school, which we are begrudgingly doing from September.
Worried doesn’t even come close to how I’m feeling about the situation.
But, I’m trying to remain positive.
Have you been in this position? Do you have any helpful advice? I’d love to hear from you if you do!