World Autism Awareness Day

In our house we are always aware and try to stay positive

In this week alone I have attended appointments, analysed behaviour, dealt with anger and anxiety by lying down on the floor. And when not talking a lot about buses, I have volunteered with a charity supporting parents and attended online seminars to help us. Because everyday in our house is an Autism day. So as I celebrate World Autism Awareness day, I think that about how it makes our lives in some ways a little different. It also keeps us busy and on our toes.

Even in the busiest weeks like this, I think about the other elements that are just joyful. We love stimming in our house, self-stimulatory behaviours like bouncing, flapping hands, humming that gives lots of feedback to his sensory system. It can soothe, help processing and just be for fun.

He loves to bounce on an OT ball because it feels good. He asked me to video how high he was going on the ball now because he thinks he almost touches the ceiling. It is alarmingly high now and the images are a blur of excited body bouncing. There was so much to celebrate with school term finished and a new update for a game he likes. And I love to see him happy like this.

We also like to celebrate neurodiversity in our house. He has such indepth knowledge around his special subjects. The great long lists of motorways or bus types or bus routes that litter our house capture him with an admirable passion.  I love how his type of brain can focus on its interest and learn so much. Steve Silberman talks about in his book Neurotribes. I don’t of course prescribe to the Rainman stereotype of autistic intelligence, but where brains do work differently, surely we can value that. When I think of what he is able to remember, because his visual skills are stronger than mine, and how despite his attention impairment, he can sit at something he likes for hours, I can’t help admire this trait.

Finally, we are a house that tries to stay positive but I hope also honest. I have written before about sleep disturbances and anxiety issues that do impact our life. World Autism Awareness Day is not a day to complain that it is hard. More to say I wish some elements of his condition didn’t make his life hard. I am reminded of a meme that says “He’s not giving me a hard time, he’s having a hard time.” Some of the challenges can be very wearing and I don’t always handle them well. But there is one thing I am certain of, our lives are so much better for our excited, bouncy, joyful bus-lover. And the World is much better for him too.

Happy World Autism Day! Let’s today and all days celebrate!

What it’s like to be different

So, right now we have it easier than a lot of parents. But we also have it different.

Watching my friends struggle through the rigours of home learning these last few months, often holding down full time work, I have been in awe. It is an unfathomable situation for many and I have written before about how much I admire my friends going through this pandemic. The education expectations have been heightened this time so there has been even less chance than last year to take time for yourself. And so in many ways we have been lucky, our son has gone to school so that he can have his routine and a differentiated curriculum. He also needs extra support like OT and Speech and Language which school have to make best efforts to fulfil under the terms of the EHCP.

We had our own mini-experience of the challenges of home learning in lockdown three. We had to coax our son through remote school during our ten days isolation. This included me sitting on the end of the sofa in a mask or shouting from my isolation bedroom to get him to engage. Obviously my husband did the lion’s share (I was ill with covid).I was amazed that we actually managed any of the tasks set. Like lots of children, he has zero motivation and two baffled parents trying to explain a curriculum that looks nothing like anything we ever learnt. So we did what we could and rewarded any effort with the iPad. He wasn’t too fussed about staying in all that time but I was very ready for the routine (and sleep that come with it) to return.

We are really privileged to get the help we need. Amongst all those people struggling to educate their children at home are many children with disabilities and special needs who don’t meet the criteria of going into school or cannot because of health risks. Special Needs Jungle reported recently on the number of children who have their “Provision Denied” in the current circumstances. Without specific actions to address this, their research suggests there may be even greater gaps in learning for these children. As such I feel a real marked difference from many of the parents I know, whether parents of children with special needs, or parents of neurotypical children.

Because he needs something different, we also happen to experience the world a little differently. There are sometimes little shocks like when I hear babies babbling. I didn’t know until much later that my son didn’t babble. He is a talkative fellow now, he just needed some extra support to chatter away to us. At times there are slights which sting, friends will listen to me talk about challenging behaviour and compare my son to their much younger child. Although I too will find it helpful to see a rough picture of child development and (ignoring the age categories), celebrate that he has reached a milestone of new behaviour. He became an appallingly bad liar recently which I am secretly celebrating as a major stage of social understanding that is completely new for us!

Photo by Quintin Gellar on Pexels.com

I don’t mean to compare my life to others, and especially not to people’s highlight reel on social media. But I share these experiences to explain that we are on a different path. It is a country road we are taking. Not even necessarily slower to get to the same spot. If you happen to be stuck in traffic on the motorway, (for example when you are unwillingly home-schooling your child and I am not,) our car may get somewhere quicker. We may even end up in the same places sometimes (for example our son may end up in a job or at university the same as any other children I know). But we are not travelling there the same way. and the picnic I packed is a little different.

This experience of feeling a little different, reminds me of what my son might feel at times. He is not really sure why he goes to school at the moment, for example. Difference can feel isolating at times. But part of my lesson about acceptance is what I see in children in his class all the time. True inclusion in society is not ignoring that there is diversity in experience, but acceptance that not everyone goes about things the same way and just getting on with the journey that you have to take.

Are you counting down until your children go back to school or will you really miss the fun you’ve been having?

Writing With a Distracted Mind

If you are finding it hard to be productive, you’re not the only one…

You know how if you had all that time, you’d write your novel? How’s that working for you? Ha! If you’re like me then your distracted mind is struggling. I think it’s clear from my posts in the past that I don’t do great creative work when life is too much. And it’s all a bit too much for me at the moment

We are in the lucky position of still having work that we are trying hard to do at home with our son alongside. A privilege because even as a keyworker, I am not on the front line and a relief because we don’t have quite the worries that other people have around finances. So believe me, I am thinking about others in a lot worse positions than us when I write this. All this extra time at home and I am still too distracted to write.

Not me but…mood.

It’s frustrating. But this time in isolation is unique in its character. I am on an emotional rollercoaster. Right now, blogging on my phone while my son is on the laptop I am enjoying sitting about in comfy clothes. No school run stress. No demand to dry my hair then pick if I do makeup or eat breakfast today because I didn’t leave time for both. (That’s my usual week day) So I am even feeling good enough to write. But later I might try and read and manage two pages before I want to nap.

In this hour by hour existence, I have been thinking about my son’s mind. His neurodiversity means his attention can be very short if he isn’t motivated. And anything remotely schooly for him has to be of interest to engage him, particularly if he finds it hard to do something. The thing that his dyspraxia and attention make it hardest for him to do: writing. The physical act of writing is very complicated. He gets intense support for this at school. It takes time. And he’s got to be interested.

It is not without irony I realise that I am battling to help him do any writing while school is closed. And I think looking at his highly distracted mind can teach me something about how to approach any work I can do while this is our reality.

How to Help Your Distracted Mind Write (or A Seven-Year-Old Learn)

  1. Keep it short. Don’t expect to stay on topic a long time. I have been using a free Skillshare login to do some courses and quick writing exercises. This has led to a short story. Maybe this isn’t the time for long form! Don’t expect too much of yourself.
  2. Make it interesting: while I won’t pretend to be reading a lot, I have been indulging my obsessions in audiobooks and podcasts. Just as my son has been indulging his Minecraft interest, I have been enjoying tales of antiquity. Mythos by Stephen Fry and podcasts such as Myths and Legends. These stories are short and inspiring. And delving into something that really interests you may keep your mind engaged a little longer.
  3. Use time limits. Often it doesn’t feel like you have done much if you have only sat for 10 minutes. But you have to accept if you have done that, you have achieved something. A time limit is a great way to remind yourself to do nothing else in that time. And I have surprised myself with what we have achieved in a short time.
  4. Use a task list. My son gets stressed by timers as he has to watch it count down. We use a list of three tasks he has to achieve instead. This is also a good way to approach work, for me it’s about polishing some work with a few questions in mind: get information across, let the characters move forward, leave early enough. These are all things I learnt in writing classes that I can tick off when I revise work. And an achievable set of tasks to do with maybe a scene or a story.
  5. Reward any effort. You might be giving yourself more treats anyway but the thing that keeps me motivated might also be a little sit in the backyard. It doesn’t have to be much but if you did anything towards some writing you need to do, reward yourself!

So these are my distracted thoughts on getting work done...how have you been managing to write?

The Swing

Feet off the ground;

Trying to snap it

I reach for my phone to record.

But you forget

Hands off the chains

The soar of fear, I shout

But you sit, still there

Feet on, feet off.

The momentous occasion

There are things that take longer for you

And I am proud,

Overinterested

Used to the gut rise

And reaching out to help.

A hummingbird buzz around you.

But this is just another play in the park,

Just a casual afternoon on the swing.

Battle on

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.