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?