Since moving into our house, I worry, pretty much the whole time about our neighbours. To be honest, I think I spend my whole life worrying about stuff. I realise some might think I am silly worrying about what others think because we cannot control that and when it comes down to it, I have more important things to worry about. Up to a point I totally agree. I so wish I didn’t care and it didn’t upset me, but I am who I am, and there is no changing that. I think what really it comes down to is that I really don’t like being judged the whole time by others. I don’t like people thinking I am a bad person or a bad parent, and all because of a lack of understanding. It makes me cross, upset and sad. I hate the idea of people looking at us thinking C is naughty, when he isn’t! I hate the fact that I cannot protect him from others and keep him safe from judging eyes. I hate him finding life so hard and then on top of that, other people not understanding!!
So here is my latest letter in my small but never ending quest to gain a bit for understanding for autism!
You must have often wondered in the past 18 months who on earth has moved into No.9. Your lovely quiet, peaceful, family Cul-de-sac having been turned upside down by the disruptive family that has taken up residency here! You must wish that your lovely old neighbours had never moved and sold to us. Since us moving in you must have thought us rude, noisy, crazy and unable to parent our children. I cannot deny we are noisy and a little crazy but I promise we never mean to seem rude and we spend more time than most parenting.
I want to try to introduce and explain a little more about our small but loud pack. In the past I may have managed the occasional hello, smile or wave. Some of you, I may have even managed a few more words, whilst seeming like I am only half listening. I’d be kidding myself if I thought I had managed more. Often I have wanted to pop round and invite you over for a coffee, drop a cake off and say hello, get everyone over for a Christmas drink or summer bbq, but sadly I can never see this happening.
We really are not that much different to the ‘normal’ family, I promise. I am a full time mummy, to our two little mini-beasts C & G. C is 5 and G is almost 3. T goes off to work everyday and works tirelessly to support as. We feel safe and secure where we live and couldn’t ever complain about the family feel of our little Cul-de-sac. We are happy, but I worry so much about how us having moved here might effect you.
I worry when we are out in the garden we upset you. Having to listen to me shouting at C not to jump of the top of the climbing frame, every 2 seconds. Not to spray water over the fence into your garden. Not to throw the ball over the trampoline. Not to push his brother of the top of the slide. I realise it’s endless! Never-mind C standing on top of the climbing frame, completely naked, again, shouting continuously at you “hello” at the top of his voice. Then asking question after question and trying to spot dinosaurs! You must hear us coming and hurry back inside, closing the door tightly behind you.
The times we are trying to get into the car and you hear me shouting at C, again, as he runs off down the road. Or the screaming from C, that G has got into the car first so he didn’t win. You must have seen me chase a naked C down the drive. Seen us arrive back home and then watched me drive around in circles; after starting to drive up the drive, only to reverse back down, turn around and reverse back again. The reason isn’t that I’m completely crazy but I have a child in the car melting down because I’ve gone up the wrong way, and I’m just trying to avoid having to deal with yet another meltdown. Which is both exhausting for me but also for C, and can easily then last an hour.
C isn’t naughty, he isn’t rude and it’s not because I’m too soft. C is autistic, as well as having Pathological Demand Avoidance (PDA). I realise he doesn’t look autistic and doesn’t always act like he is. But spotting someone with autism isn’t easy. It’s by no means an obvious disability, it’s properly one of the most hidden disabilities out there. This in itself can bring its own problems. One of which is most people thinking C is naughty and rude and I’m a bad parent.
Life is never easy or straight forward. PDA really means that C suffers from extreme anxiety. Even the most simplest things can cause massive worrys and distress. Because of this, he can become extremely controlling, sadly leading to people thinking he is rude and bossy. A small change at school, me having moved the kettle in the kitchen or Daddy not coming back when he said, can all cause him to meltdown.
C has no idea of danger. If given the chance he would jump out of an upstairs window, let himself out the house and just disappear, or find the biggest knife in the house and try and cut stuff up. He has big sensory problems which means he is at his happiest naked. He doesn’t understand that if it’s really cold, he needs to wear a coat, mainly because he does not realise he’s cold. He does not get social cues, and he doesn’t realise that not everyone wants to talk to him even though quite often he does not want ANYONE to talk to him or me.
C hates anything happening that he wasn’t expecting. He needs warning about everything! Even the house phone ringing can cause a meltdown. So if ever you have come and run our doorbell and I have seemed completely uninterested in what you were saying, door only open a jar, with a screaming child in the background. Please don’t think I was being rude, or, now feel bad, but C was taken by surprise and he was just letting me know that he wasn’t happy! If you have seen a pile of shopping on the doorstep, it’s because I had forgotten to tell him Tesco was coming. So I wasn’t allowed to bring the shopping in, and I just needed to wait for things to calm down so I could carry it in to the kitchen undetected.
If you have ever heard me trying to get him to open the door, it’s because I have made the mistake of walking out into the garden for a 5 second breather when he is having a meltdown and I forgot to take the keys out of the door. So he has locked me into the garden. Because we have had to put window locks on all our windows, even if I could open a window, not even my head would fit through.
So yes I am slightly crazy. But please never think me rude. I never mean to ignore you when we are all getting into the car, but it’s just sometimes easier not to talk if I know it’s going to upset C. A two minute chat with you could then mean I have to deal with him melting down for the next hour. I am sorry for your peace being shattered when we go outside and I am sorry that you have to see and hear C having meltdowns most mornings when its time to go to school. Everyday life for someone who is autistic is hard, really hard. As a family we try every day to make C’s life as easy as possible but with him suffering from extreme anxiety and him, himself not understanding why, not being able to explain why he is so upset, so cross, so worried, we all at times find ourselves slightly stressed.
Each and every day we try and understand a little more, try and discover what helps and what causes him distress. You all must at times feel like you too are stuck on our roller-coaster not being able to get off. Please try and bear with us. Please try and be patent and just try and understand.
Your very grateful neighbour at No.9