Autism can be all consuming and selfish. There, I said it! It is. The word Autism actually comes from the Greek word “autos,” meaning ‘self’. The thesaurus will tell you that the word “describes conditions in which a person is isolated from social interaction. One symptom common to all types of autism is an inability to easily communicate and interact with others.“
Individuals with Autism often find it very difficult to see outside the ‘self’. They can’t always see beyond their own needs and requirements and therefore don’t consider the needs and requirements of others. NO. SHIT.
A couple of weeks ago, for two nights in a row, Martha came into my bedroom in the middle of the night when I was fast asleep. She turned on the lights, sat on the bed, and just started talking at me. When I wasn’t fully attentive (i.e. asleep) she hit me.
I asked her if she’d like to get into the bed with me, she refused and also did not want go to ******** sleep. At this point, she begins shouting and swearing because the situation isn’t going the way she wants it to. I am so tired, (it is literally the middle of the night) and this is seemingly THE MOST UNREASONABLE BEHAVIOUR EVER!!!!!!
After a short while of this, Martha decides she needs the bathroom (despite me asking if she’d needed it within moments of her entering the room *rolls eyes). So, off she goes to the bathroom. I have to follow her as there’s a very high chance she’ll go into one of the other bedrooms at this point and wake up her sister Elke, or Karl. As I reach the bathroom, behind her, I am greeted with the door literally slamming into my face, followed by a tirade of abuse about how much she hates me, what a shit I am – blah blah blah. In this moment, I am beside myself, pissed off with how this night is going. I’m not dealing with it particularly well and frankly, I cannot be arsed. I’m not very good when I’m tired (who is?). ‘You are so f****** unreasonable’, I think to myself as I sit on the floor outside the bathroom.
People often tell me what an amazing mum they think I am; how patient I must be and what a good job I’m doing. I struggle with hearing that. Whilst really flattering (and we should all learn how to take a compliment – I’m all for them!), I struggle with it because firstly, nobody really knows that’s true (especially not from reading a blog that I’ve written!). Nobody sees those moments in the middle of the night when I’m too tired to cope or have no energy left in me to do a good job.
Secondly, I’m just really not. I didn’t choose this role or for Martha to be this way, it’s just how it is, and as her parent, I have no choice other than to deal with it, get on with things, and do the best I can. It’s a massive learning curve and we find out new things and adapt our lives accordingly, every, single day. Together as a family. Anybody else would have to do the same.
We all have our own challenges in life and I know many people in far worse situations or who’ve been through much bigger life challenges than we have. I watch in awe as people seem to handle these things so well – but I’m also acutely aware that what we see as onlookers is only the surface of things, and I suspect we all have our moments where we behave perhaps not quite as we might have liked to and where we ‘could have done better’. I’ve had many, many moments I’m not particularly proud of. Daily in-fact.
Martha can sometimes be like living with the most unreasonable person in the world. She creates all the feelings that contradict how you should feel and behave as a parent. For example, if she hurts herself or bleeds, her reaction can be extreme. She can go into a state of panic and will often have a meltdown. However, if you follow your instinct, as most parents do, and try to help her in some way, this can often make things worse. If she’s hurt (despite the pain being caused by a fall or a collision with an inanimate object, for example), Martha takes it out on whoever is nearest at the time, and they automatically become the target of her aggression and abuse. Her reaction signals the end of the world but god forbid you should try to touch or help her!
This has many repercussions. In the case of a nose bleed for example – blood everywhere! Making a situation that can be solved pretty easily ordinarily, so much worse by sending everyone into a panic and creating a backdrop that looks like a massacre has taken place.
She can have a high temperature or feel unwell but point blank refuse to take any medicine. She may have a rash or a cut but won’t let you put cream on it. The number of times I’ve been attacked in the night as I’ve woken her from sleep trying to apply some kind of cream or ointment.
This unreasonable behaviour often applies to simple daily activities too such as washing or brushing her hair (we often reach a stage where we have to cut matted hair from the underneath of Martha’s hair because we absolutely cannot get a brush to it without causing an unnecessary amount of stress and upset). Teeth brushing is horrific and I worry (a lot) about Martha’s oral health and what will happen if she ever has tooth ache or needs any other kind of medical intervention. At 10 years old, she has never yet sat in a dentist’s chair for example and had a proper examination or any of the other treatments given routinely by a dentist.
I often say, (and don’t quote me here in the Usborne book of bad parenting), that if it wasn’t such a risky business, it would be the ideal solution to put Martha under a general anaesthetic once every few months; at which point we’d rush in the dentist, doctor, immunisation team, hairdresser and I would quickly cut all her finger and toe nails (another blood-curdling activity – Luckily, I’m blessed with forgiving neighbours who pretend not to hear anything!).
Other lovely day to day disobliging behaviours include; demanding a drink; which unless is delivered in exactly the vessel she envisaged at the time of asking, at exactly the right temperature and in exactly the correct shade, then one should be prepared to have it launched right back at you! Or having to follow EXACTLY the same morning routine each day which usually includes some kind of ridiculous song or performance on my behalf. Anyone who knows how much I hate performing, will know that kills me (wink – she’s my most grateful and captive audience!)
As a family, our whole lives are pretty much dictated by one person and their needs. This has often left me not feeling fully in control of my own life or life choices and has meant a lot of compromises and missed opportunities.
When things are going well, being Martha’s mum is truly rewarding – possibly more so than for most, because the littlest things can be the greatest of things. We celebrate getting through a whole day without shouting or something breaking; each bath time, tooth-brushing, successful mealtime – where the food ends up in our bellies rather than on the floor – all these little things are huge, celebration-worthy achievements!
I’ve said before that it’s hard not to look on with envy at other people’s lives. People who appear to be doing normal, simple things that we can’t do, such as meeting friends at the park, going to busy places or going out in the evenings when their children are at home. There are definitely moments where I feel envious of others doing these things and who don’t have to plan every trip out with considerable forethought, precision and planning for every possibility.
I’m lucky, as I’m definitely an optimist by nature. (Reading this, you may not agree with me, but I promise I am most of the time!). Generally, I don’t spend too long dwelling on the negatives or feeling too sorry for myself but I have to be honest and say there are some days I do. There are certain moments or periods in time, where it feels like a relentless, impossible task, and it’s hard to climb out of that hole. To see the light at the end of the tunnel. If I think too much about what the future may bring, I can start to feel panicked or claustrophobic. One thing I come back to a lot is what adulthood might bring for Martha, and furthermore what that might mean for her if I’m not around. Who else will accommodate such unreasonable behaviours? Without a mother’s love, that job is doubtless an even greater one.
Despite the challenges, one thing Martha’s unreasonable behaviours do provide, as well as those feelings of achievement in the face of adversity, are many opportunities to come together as a family, to work as a team. Karl will step in if I’m not coping particularly well, or Elke may offer up a distraction or alternative idea when we’ve completely run out of them. They can also occasionally provide (not usually at the time of the event but often in retrospect) amusing moments to look back on and laugh about; and applaud ourselves for getting through and coming out the other side. Alive. And happy.