When all else fails, battle on. A bad day? A bad month? Or all merged into a steaming heap that you cannot divide up into good or bad, just a pile that’s been dumped right on top of you. Then you battle on.
The battle pales into insignificance to other wars being fought elsewhere, I know that, but still, here in my life, this is a fight. A fight for my son and his needs to be heard. A fight too for keeping my head above water, juggling my responsibilities with the extra workload of paperwork. And of course it’s not just the actual paperwork but the emotional load of it all.
I learnt back in November when we were going through the EHCP draft stage that the emotional toll took a lot out of me. The process should be over by now but they have not listened so we are waiting to mediate. Up and down the country families are going through this stage or taking the Local Authority to court. And why? There is not enough money nor enough places to meet the needs of our children. There’s a full on #SENDcrisis. Meanwhile newspapers are reporting that schools are taking “your” children’s funding to plug the gap. This discriminatory writing where we are set up them vs. us is so toxic and the fight feels so much bigger than just our family.
All of this does not make a great creative space. Knowing how tough the end of last year was, I have been more prepared to take it easy on myself. Instead I have been escaping to baths and books. And some read some amazing writing this month.
The Confessions of Frannie Langton is such a brilliant novel. Recounting the tale of the end of slavery and the pseudo-science of eugenics, the full horrors that Frannie experiences unravel through the tale she tells. We learn how she ends up in prison, her life in the hands of a system always going to beat her down. It is a compelling novel and I loved that we really get to hear her voice.
Inspired by the prison setting, I started Alias Grace this weekend. Another fascinating novel that reads too as a murder mystery. So far I am loving it. Shame my son just took my bookmark out!
Obviously there are many ways in we can distract ourselves from our real life problems. But for me, a book will always be the best place to escape.
Some weeks I don’t get to be me, I don’t get to write, I am just Mum…
The last few weeks have been tough. We are applying for funding for support for my son and out of the blue the paperwork turned up. If you have ever received a document that goes into depth not just about your child’s strengths but all their difficulties too, you know this is a very emotional and difficult thing to read.
The way it has set me back most though is having to rely on others, whether trying to get hold of staff, getting an advocate to respond to the laughable offer we received from the local authority. And in the mean time trying to entertain little one over half term, deal with sickness, deal with household things. Sometimes the motherload comes crashing down upon you.
This has been very hard to handle. I made mistakes at work, I didn’t get things done I needed to, I have spent the week feeling ill physically and having aches and pains. Stress does this to you. It also robs you of the chance to be you, to write, to be creative.
Your circumstances may be different from mine, in terms of the difficulties I am currently facing I hope for you they are. But I know too that I have many things that make my life so much easier than others. So if you do get a week, two or three when the weight of the world tries to crush you what can you do?
Still go on Artist’s Dates. A couple hours a week to indulge in something that makes life a little more interesting. This was lucky because my birthday treat came in the middle of this mess so I had one already booked. I hope to share more about seeing the treasures of Tutankhamen soon, it was wonderful. Doing something for you but particularly for your creativity is a real lift at a tough time. I have written about some cheap and easy date ideas I would also recommend.
Use your journal. As you may know I use morning pages, and have written about how I try and fit in a few pages of journaling each morning. Boy did I have a lot to moan about in the last few weeks! It does help me to get down my worries, my fears and sometimes inspiration strikes.
Re-evaluate what you can achieve in a short time. I had half an hour this week where little one was entertained and I sat down and wrote. I surprised myself by revisiting the ending of the dreaded draft. I have been struggling with this ending for months! Something about the urgency of the little burst of time, a self-imposed deadline, helped me start to fit some pieces together I have been puzzling on for a while.
Cleaning up around my space has helped me. I find having a quick sort, doing a job I had been putting off like dusting the light shades, they gave me a small sense of control when I have very little over anything else. The burst of writing only happened after I finally cleared through some paperwork that had been cluttering up my dining table. It helps.
This month won’t go down as my most successful writing month, which is ironic given the #WritingCommunity are ensconced in #NaNoWriMo. But for me, if I just get through all the things I am being asked to do as my darling boy’s Mum, then I will chalk it up as a win.
The tang of metal is on my tongue, back in town from a few days away I notice the pollution more, is it a wonder with the assault on the senses that I get stressed out in the city.
Breathing. After a cold a few years ago, I developed asthma again though mild it’s worrying that the last time I had this problem was when I was at school and the playing fields were next to the M6 motorway. Breathing in all this pollution I worry for what it will do for my health long term, and I only live on the outskirts of London.
Getting sick. If I go into London, a few days later I will have a cold. You must get immune to if you are always going in. I have become religious about hand-sanitizer. I didn’t know that I am unusual in feeling a sensation on my hands if I haven’t cleaned them for a while. I get this cloyiness on my palms, and it won’t leave until a wash my hands. The fact that my skin breaks out or I have a virus within days of any trip on the tube seems proof enough that the City is not good for my mild anxiety-led germophobia. Squashed with too many people, holding on to the handrails like you’re supposed to on the escalator, these are all hard for me.
Sensory overwhelm. It took having a child with Sensory Processing Disorder to understand the world differently. His overwhelm at noises, his reaction of running from busy crowded places has opened my eyes. The world is often too noisy, too busy, too bright, too loud. And though my I can regulate my reaction to the barrage of too much information, I also hate it at times. I may not respond so much but it builds up inside me that tiny irritations build up so that often I reach a point where I need a sensory break too. My go to move is to put my headphones in and looking around, a lot of other people cope this way too.
Too loud. Except not everyone uses headphones. Music out loud on buses is a pet peeve. I have asked many a (usually young man) to put in headphones. I saw a man blasting his music from a player on his shoulder the other day. On reflection, he was probably promoting his own music but I stood nervously to see if he was getting on my bus. Would I have to confront him? Would the bus driver say anything? I want to be polite even if you show no-one else courtesy. But he stayed at the bus stop. The whole imaginary argument had been in my head but left me frazzled. Calming myself with the mantra, nothing happened, and “use this” irritation.
The Big Smoke. I hate the smell of smoke and particularly weed which permeates everywhere. I took precautions to hide it when I smoked in my twenties so no-one found me but now it’s ubiquitous. I will never know if then, in my reckless moments, I was in fact bothering a Mum with a young child who asked her “What’s that funny smell?” Just like my son has asked me.
His palate is more sensitive and no doubt some of my anger at near neighbours for smoking is because I worry for him. I want to make life as easy for him as I can. But this like my other concerns seems like a characteristic of the urban experience, to me. It represents people doing what they want, where they want without considering others. An individualist way of living.
I have been writing a short story about a woman driven mad trying to catch fly-tippers. This pre-occupation with her surroundings, well let’s just say I can relate. But where my concerns really come from are this desire to make the world a better place for my son. To think about how we can be more considerate to other people and to our planet.
If you’re interested in what it can be like for a person on the Autistic Spectrum with associated sensory difficulties, I recommend this campaign called “Too Much Information” from the National Autistic Society.