Halt! Who goes there?

It’s a New Year. 2018. And despite not writing anything since October, I thought it might be a hoot to have a crack at this writing thing again. So I made my way to my favourite writing hang out (you all know where I mean!), ordered an Americano and whipped out my shiny, new, lightweight laptop. I know! Swanky or what!

Opening the dashboard of the blog, I had a notification that made me look at my About Me page. Which was clearly something I hadn’t done in way too long, when you think I’m now the grand old age of 39 and not the spritely 37 year old smiling at me from the first line.

Age withstanding though, when I read the rest of it I realised I either didn’t like it or didn’t recognise the person it was talking about. Hmmm thinks I, it’s probably time to update that. Make it read more like me, make it more relevant.

And that’s where I fell down. Not literally you understand. The old age hasn’t affected my balance just yet! But figuratively I just fell down. I just couldn’t think of a single thing to write. About me? Who even is that? Surely I’m more than the few sentences I’ve written previously about my relationships to others and the weight of the flesh that hangs off these bones? And that put me in a contemplative mood.

In conversation with a friend the other day, I realised that despite visiting various family and friends and meeting new people over New Year, no one and I really do mean no one, asked what I’m doing with my life or how that’s going or even what’s going on for me at the moment. Lots of people asked how Oscar was doing and everyone asked my husband. About his job, his hobbies, his interests. And it’s not like he foisted this information on people. They just asked. And no one asked me.

My friend thinks this is because people assume that they know me. That the life of a SAHM, with a disabled child is somehow obvious and therefore doesn’t require asking after. Maybe she’s right. People can be quick to pigeon hole and to do so must make assumptions. Judgements. So that would make sense. Or maybe they don’t want to know? It’s too vague and too open to being messy, so people don’t enquire. Full time caring doesn’t have a neat job title or one word to describe it like a hobby might and that scares people. It’s too unknown and that conversation could lead to places the asker might not be prepared to go. Maybe? Its a thought.

Either way it just supported the feeling that lately I have become somewhat invisible. To the outside world and to myself. And that makes me so sad. And actually its makes me mad. What arrogance to assume you could ever know anyone enough to not need to ask?

But I can’t be too angry with other people. I mean yes, people could at least ask, but seriously, what am I going to tell them, if I don’t even know myself?

I don’t believe in resolutions, New Year’s or otherwise. I think they are fated to fail and who would ever want to do that to themselves? But I have seen others talking about thinking of a key word to describe the focus for the New Year (or any time of the year!). I’ve done it before. I’ve used words like Happy and Brave. But looking at my About Me page and not recognising the person on the page has made my decision for this year.

This year I think its got to be Identity.

Oh and that reminds me, my passport’s up for renewal this year. How very apt!

For real…..

My way of coping with Oscar’s Autism diagnosis, as devastating and life altering as that was for me, was to focus on the good. The achievements, the fun, the joy. Which is fine most days. But I’m starting to think I’m only managing this by under acknowledging the harder side of our lives. At least openly and on public forums such as this blog and social media.

Today we had a trip to a zoo, that Oscar knows well (we have an annual pass). It started in the car. He didn’t “like” the zoo. He wanted to drive a train (!? not ride in a train, actually drive one!) He then wouldn’t allow me to look at him during the journey. When we arrived he refused to walk. We tried to stand our ground, which only incited screaming and tears. Eventually it became dangerous to continue (we were in the car park) so we capitulated. We then had to go to the membership hut to sort out my pass. He didn’t want to be in there, so started growling and hitting out at me. I then had to have a photo taken for my pass. I thought I was smiling. The photo is just someone grimacing.

We finally got him into the park and headed straight for the little train that runs around the zoo. It was the only thing we did he seemed to get any pleasure from all day. He acknowledged all of about three animals, two of which he only looked at because he insisted I voice them. Today I got to be a Bison and a Tapir. But today he didn’t run from enclosure to enclosure as he usually does. Mostly he ran straight past them without a second glance, while we tried to keep up. We managed to get some lunch, then he wanted to go the park. Now Oscar usually reserves his hostility for me when we’re out, but today he just started being incredibly rude and aggressive to other children. And that was as much as I could take. I manhandled him off the slide and we made our way back to the car, using the land train. Because he wanted to be carried and neither of us had the energy.

Sat on the land train, Ben looked at me and asked if I was OK. I answered that I was sad. And it hit me how rarely I acknowledge my negative emotions out loud. Oscar’s behaviour today, whether he’d been able to control it or not, had broken my heart. Publicly. I try so hard to be positive and to bend myself to his needs that I have to spend an equal amount of energy to keep the negativity at bay, all without admitting that’s what I do. And quite frankly it’s exhausting.

I should be my son’s biggest cheerleader, but I feel like I can only do that by denying the side of him I just can’t cheer on.

His diagnosis has left me without the ability to turn round and say publicly, “do you know what, my kid’s been a proper shit today and I can’t cope”. I can’t bitch about his behaviour because for most of the time, he doesn’t get it the way other children might. And as an SEN parent I can never admit I’m not coping. Steely determination and the ability to cope in situations that others tell me would have them on their knees (literally, I get told this A LOT) means I feel like I have an expectation (others? mine?) to live up to. What can I say, I’m a people pleaser!

But the truth is, today my son has been a proper shit and I don’t feel like I’m coping very well at all.

 

Zippos Circus – our first visit

We’ve never taken Oscar to see any kind of ‘show’. When your autistic child has a history of struggling to sit and attend to anything, you just avoid things that are likely to demand that of him. No theatre, no cinema, no concerts and no circus.

Our small town is regularly visited by a circus and for the last few years Oscar kept asking to go. The thought of it worried me. The noise, the lights, the atmosphere, the sitting and attending. How would he cope? So I just kept putting him off. It might sound mean but it just didn’t feel like the time was right.

Then a few weeks ago Zippos Circus contacted us and asked if we’d like to attend one of their shows in Guildford. I weighed it up in my mind and decided maybe the time had come. He’s five and a half now. We have to give him the opportunity to experience as much as we can. Making assumptions on his behalf really isn’t fair. It’s up to him to ‘tell’ us whether he can cope.

Preparation

So we prepared as well as we could, showing Oscar plenty of online videos and pictures of Zippos Circus. He was more interested than I thought he’d be and loved the clips of the slapstick action on Instagram.

My only concern was that he seemed convinced there would be “an elephant on a tightrope, that jumps into a bucket” and “tigers”. Yeah, thanks for that Disney! The days of exotic animals in circuses are long gone (in the UK at least). The only animals in Zippos Circus this year were the horses of the Khadikov Cossack Riders and Norman Barrett’s Famous Trained Budgies.  I hoped he wouldn’t be disappointed.

To the Circus
a circus big top

Big Top – photo courtesy of Zippos Circus

The Big Top itself was a sight to behold. Despite confusion over where to park (we parked in the nearby Park and Ride, ignoring the handwritten signs that the car park was NOT for Circus visitors and hoped for the best), the immediate impression was one of excitement. The buzz of the families arriving was palpable. Oscar was given a programme which he studied in detail before we went in. Then we were shown to our seats by a very helpful member of the team. In fact all the staff we came into contact with were courteous and helpful.

small boy reading circus programme

Oscar swotting up before the show.

We sat and waited for the show to begin. With popcorn and without any real expectation. As it happened, this was the first time any of Family Savage had been to a circus. Our biggest concern was obviously how Oscar would cope. We were ready to leave at a moments notice.

He was enthralled in a way I’ve never seen before.

The acts were so diverse. From the fearless Timbuktu Tumbler Acrobatics team,

African acrobats in formation

to the heart thumpingly awesome Los Carmonas Del Sol from Argentina.

Argentinian drummers at the circus

The way the show was structured really worked for us. The energy was so high and the pace so fast, Oscar had no time to feel like he was waiting around. He was fascinated from the start. And add in a little peril, like trapeze artist Kimberly did as she flew over our heads..

…. well he was spellbound!

My personal favourite was the knife throwing act. It had a real vintage feel and to be honest more of what I expected to see at a circus. Give that woman a round of applause.

However Oscar’s absolute favourite was the slapstick comedy act Emilion Delbosq. Zippos make it very clear on their website that this is a circus without “scary clowns”, but Emilion really was that comic element that circuses are known for and Oscar adored him. He talked about him for ages afterwards!

This dude moved around so fast my photos don’t do him justice. Picture courtesy of Zippos Circus

Issues

Our only issue was something we hadn’t planned for at all. The intermission.

After the interval, which Oscar coped with admirably, we had to come and sit back down for more acts. This threw him entirely. He was so confused. And that confusion quickly started turning to anxiety. Ben took him outside for a walk, but when he bought him back in he just couldn’t cope and announced very firmly that he needed to leave. Now.

So of course we did. Ahh well, you live and learn.

It meant we didn’t get to see the whole show, but then at 2 hours I wasn’t convinced we would anyway. It’s a long show for any five year old, let alone one on the spectrum. And I was just so proud he’d made it through as much as he did, I didn’t care that we missed the Globe of Steel motorbike acrobatic team or Alex the Fireman (!). We’d been to the circus and had a great time.

Would we go again?

Yes. Ben and I loved it way more than we thought we would and we’ve both said we’d like to go another time, without Oscar. An evening show without children would be a real night out! Would we take Oscar again. Actually yes. We wouldn’t pay for the fabulous (although rather expensive) ringside seats we had this time, only for him to want to leave half way through. But because he really enjoyed the acts he did see, we’d definitely take him again.

Just we’d make him sit in the cheap seats 😉

 

 

 

We’d like to say a huge Savage Family Thank You to Zippos for inviting us and gifting us our tickets.

As always this review is my own opinion and I have not been paid to write this post.

I would also like to point out that our experience of Autism at the Circus is ours alone and I do not attempt to speak for other children on the spectrum.

Although if you’re an Autism Family you know that already 🙂

 

 

 

Worth a thousand words……

Back in May I wrote a very personal post about mental health. About how receiving a life long diagnosis such as Autism for your child is shattering and how little support parents are given to come to terms with what it means to them, as a family, as parents and as people. It was an important post to write. I was, and still am, incredibly proud of it.

Any who shortly after publishing it on the blog I was contacted by Spectrum Inspired; an American based not for profit, whose mission is to:

“give [ASD] families a platform to voice their struggles, celebrate their victories and share their story; all the while, removing the stigma and stereotypes of what is thought to be representative of Autism and show the world just how broad and beautiful the spectrum is.”

I’d been following Spectrum Inspired (via their blog and Instagram account) for some time, and was so flattered to hear that they really appreciated what I’d written. And I was bursting with pride when they asked if they could use my post as an article for the next edition of their printed magazine 😱.

I agreed immediately, just happy that my thoughts and support might reach more Autism families across the globe. I then had a completely unexpected email back from Melissa, asking me if we would like a session with a professional photographer, to provide some images to go with the article. She explained they had a partner photographer not far from us and would be happy to arrange a session, with all images gifted to us at the end. Well! Who could say no to an offer like that?

We prepared Oscar for the session with Redhill based Amanda Dalby, by showing him the very useful social story that Spectrum Inspired provided. The idea was to capture our lives, as they are. It was suggested we be natural, relaxed and just ignore the camera. I can’t tell you how difficult that was for me on the day! But after an initial reticence from the boy (“NO not me, photograph my family“), he turned out to be a pro!

© Amanda Jane Dalby 2017

The lovely Amanda came to the house early one Saturday evening and Oscar was keen to show her all his toys and especially his new Lego train.

© Amanda Jane Dalby 2017

He then quite randomly told us he wanted to bake a cake! Of course he did !

© Amanda Jane Dalby 2017

After an hour or so we decided that, as the evening was so beautiful, we’d go and see if we could get some good shots up at a local National Trust beauty spot, The Devil’s Punchbowl. And boy am I glad we did!

© Amanda Jane Dalby 2017

© Amanda Jane Dalby 2017

© Amanda Jane Dalby 2017

We had the most amazing hour running here, there and everywhere. Basically, following a very happy little boy. Going where he wanted, playing his games and dancing to his tune. I tell you, Amanda certainly earnt every shot she got that day!

A few weeks ago the magazine was released. And my copy arrived today. There are my words in print. And there’s Oscar. And I can’t tell you how proud I am of both of us.

 

Thank you to Melissa, Amanda and everyone at Spectrum Inspired for such a beautiful gift. For seeing me, for seeing us and for trying to ensure the world sees us too. And not just my little family, but the entire Autism community.

After all what’s the point of awareness, if we are the only ones who are aware?

© Amanda Jane Dalby 2017

 

Mightier than the Sword

Hi

It’s been a while. I know that. I’ve wanted to write. I’ve even tried to, but something is holding me back. And the longer I leave it the harder it gets.

I don’t know. It’s not like there hasn’t been stuff going on I could have written about. There’s been all sorts. It just doesn’t seem interesting enough. I don’t know, I think I’m experiencing something of a burnout. Creatively, emotionally, everythingly. I get through the day. I celebrate what I can about Oscar’s achievements, if we’re all still alive at the end of the day I class that as a success. Everything else just seems to fade into the background.

And then it gets that there’s so much I could write about, that I don’t know where to start. Like for example four days ago was my four year blogging anniversary. FOUR YEARS! I’ve celebrated every other ‘year’ milestone, but this year came and went without me really noticing. I should have at least acknowledged it. But as I hadn’t written for two months, I didn’t feel I had the right. I mean what’s that all about? I take a two month hiatus and all of a sudden my four years worth of back catalogue (that’s 352 posts if you’re interested), no longer means anything? Really?

I used to be so proud of my work, and in some respects I still am. It just doesn’t feel enough anymore. Good enough, solid enough, worthy enough. 80,000 views in four years really isn’t that much. I see new bloggers getting that in their first year, shit in their first six months if they’re savvy. What is it they say; comparison is the thief of joy? Hmmm.

So, if you wondered where I was, there you go. I was here, just having some sort of creative crisis. Putting so much pressure of myself to write brilliant posts that I write nothing at all. So do I give it up? And if I do, what’s left for just me? But if I keep going, I think I need to redefine my relationship with my blog. I never set out to be a blogger and I think that might be my problem. I care more about how things scan, and how interesting the words I write are, than how many people they’ll reach or their SEO value. because you see I think I’ve figured something out.

I’m not a blogger, I’m a writer.

And if I just start writing again, perhaps I’ll find my new place, my new creative identity. I just need to pick up that pen….