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!

Pacing

My body can’t keep pace with life at the moment

I thought I knew tired because of sleep disturbance and anxiety brain etc. But I didn’t know fatigue. It makes me achy, it has me forgetting words and it’s got me lying down every afternoon. I am sharing this because I think life is also what happens to you.

I have tried to explain this before, to friends who were finishing their degrees and worried about what next. That question doesn’t get easier, nor does it always go to plan. I don’t mean we have to be passive, just sitting here watching the wheels go round and round; it means to expect life to throw you curveballs more often than not. My metaphors are so mixed there but I am going to put it down to brain fog and move on. Change is the only constant. And however ambitious you may be, you may have to change your plans.

So weeks on now since my initial infection of covid19 and I am still struggling to manage the fatigue. I had a giddy few days where I felt stronger and I gaily went a-walking across Richmond Park. A gentle walk with lots of stopping to read, meditate and chat on the phone. But still, a long, luxurious walk. And then a meeting. By the end of the same week I was done-in. Come Monday after, I was sleeping most the day. I full-on crashed.

So my body is demanding that I slow down. That I pace myself. This includes how I spend my time. Less writing, only short walks, maybe even fewer hours at work.

I have been listening to podcasts about slow living and gathering ideas here on Pinterest. Because of course I can’t just slow down, I have to do research too. So, I have started to gather all the advice to me. I have to focus on one activity at once. And prioritise where I spend my energy. I also have to be realistic that I won’t get the pace right straight away.

Fatigue is a metaphor for my writing life in some ways; sometimes you do go slower than others but because you have no choice. What is most important is to go at your own pace.

Back to School

Listening to Gretchen Rubin’s podcast this week, I couldn’t agree more, September is a new start

Here in the UK children are going back to school in the next two weeks. They may have to get used to some new things, like masks in the corridors, or eating at their school desks if they can’t be outside. They may have to learn some things afresh like how to sit still in class, how to write again, how to be around people but not too close. But it’s clear a decision has been made that school is essential again.

I am really looking forward to some routine in our lives. Even though we muddled through home-learning (what we attempted could never be called a homeschool), we never hit a routine more than my son reminding me it was play time each morning. I am looking forward to some time to myself and seeing friends though with the new rules in place, not getting too close or seeing anyone too often. I am also looking forward to a sense of some normality, though it has all changed, the new normal is better than that time we stayed inside our house for three months.

Photo by Pixabay on Pexels.com

The fact that school is definitely back has led to a few discussions in our household already. Being a Mum of a kid whose special needs mean he resists changes and transitions anyway, I am used to battles about going to school. But Social Story in hand and special visit arranged we are going boldly forward with the “school is now open” full time plan. At times I feign optimism for him, mixed with the dread that sits in my stomach most days now. I am also getting more positive that this will be good for both of us.

It’s clear that the government is scrambling to convince parents it is safe, new policies are coming out every day that suggest what will happen, how things will change, if we have a local lockdown. But in the meantime there are news articles about how safe children are at school. I have been reading all the articles, despite trying to stay away from the news. It’s safe now. We think. Mercifully our children will not get terribly ill if they catch the virus, I just hope that mildness means the same can be said for us and their teachers if they do pass it on.

In a bid to read between the lines I think the answer is we probably don’t know what will happen in the next few months. As it stands, the government seem pretty determined that the schools will stay open come what may. Afterall, they kept the pubs open even though family members couldn’t meet at home in Manchester and Yorkshire in recent weeks, I guess they will do the same with schools. And hope for the best. Because that is where we are really.

So though the news articles haven’t completely allayed my fears, I can’t help but feel a sense of newness in the air. I wonder if despite the challenges ahead for me and my son, I can find ways to lift the anxiety and get back to normal. Gretchen Rubin explains here in the article which accompanied her recent podcast that September is the new January because it can give us a sense of a clean slate. That means that when you make a big change in your life, you can often change a habit at the same time, “exploiting the new” as she describes it. So for me I need to go forward with a more positive mindset about the fresh start at school. And maybe work harder on my habit of not reading the news.

How are you feeling about going back to school?