Straws – what do they mean to you?

I wouldn’t call myself an Environmentalist. I pick up/take home litter, recycle to a point, I repair, reuse, refuse if I can. I’m just a citizen trying not to be a dick about the impact me and my family have on the world. The recent awareness that has reached the mainstream about the use of plastics is particularly frightening. I mean microbeads man! Who came up with those? Good grief!!

The latest polluting and downright dangerous item we are all starting to wake up to are plastic straws. The celebs have backed the call for banning the straws, much as they did for microbeads. Microbeads served no essential purpose. And for those of you that don’t need them, neither do straws. But here’s the thing, straws do! There is an entire community of people who actually need straws.

Oscar can only just about drink out of an open cup. Under duress. And then mostly not even then. He’s six, but he’s also autistic. I don’t know what it is about an open cup that makes him refuse it. And I do mean refuse it. No matter how thirsty he might be. It might be the coordination needed to drink successfully or it might be the sensation of having liquid against his face or the feeling of having that much liquid rush into his mouth all at once. It could just as simply be that through a straw is how he knows how to drink and teaching him any different will be a long and arduous process. I can’t really pin it down.

But my son’s issues with drinking are his and not to be judged. If my six year old still has a sippy cup at home, meant for one year olds, so what? And if he needs to use a straw in order to allow him to access hydration when out and about, then that’s fine and dandy with me. And while I do support any initiative to make our seas healthier, I am incensed at the way something countless people NEED, has been demonised in the press recently.

Raise awareness, sure. Change your habits, absolutely. I myself have just purchased a set of metal reusable straws to take with us when we’re out and about. I’m not going to be being a dick about this. But I am privileged enough to be able to plan ahead like this and to have the resources to obtain what I need. Removing something people might actually rely on, with little or no warning, and without providing a substitute is thoughtless and ableist.

I’m glad that the general public are waking up to the environmental impact of their lives. But I urge you to consider how your new found fervour might actually affect other people’s lives, those not like yours, before jumping on the next particular bandwagon.

Metal straws and case

 

Repost – Why slowly but surely, autism has become an accepted part of our family life by Anna White

A couple of weeks ago I met Anna. A local mum, new to the area and with a newly diagnosed autistic son. Anna had reached out on social media to find local children like her boy (train mad and outdoor loving), and someone put us in touch. We met without the children and just talked. After that first meet up, came another. We chatted for hours! She told me she was writing this article and asked if she could talk about me in it. I was so honoured.

If you have the patience to get past the (albeit free) Telegraph paywall, you can read the original article here. But in case you can’t, here is Anna’s article on her first steps to becoming a Autism Mama.

 

Why slowly but surely, autism has become an accepted part of our family life.

By Anna White 23rd March 2018

All in it together: Anna White with her autistic son Benny, five, his twin sister Agatha, and Alex, aged one CREDIT: HEATHCLIFF O’MALLEY FOR THE TELEGRAPH

“My new friend Benny can’t see me,” said five-year-old George about my son in their first term of reception. Benny isn’t visually impaired; he’s autistic. Although he accepted George into his space and played alongside him, he never made eye contact or responded to him. George moved on – it wasn’t much of a friendship.

Benny is chatty and sunny at home, but when he walks through the school gate an invisible force field suddenly shrouds my little superhero, protecting him from the swarming crowds of children.

It’s not impenetrable. His teachers have broken through, particularly his favourite, Mrs Rowland. He approaches older kids and happily races with his twin all the way to school and back again. But in the classroom and playground, and without adult support, he struggles to conform or participate in group activities. Why?

Because for Benny and many other children with autism spectrum disorder (ASD), environment is everything. A large proportion of ASD kids struggle to process everyday sensory information. To concentrate or hold a conversation we can filter out background noise, ambient light, intense colour. They can’t do this. Every room is louder, brighter, busier, which can result in over-excitement, withdrawal, anxiety or confusion.

‘Benny, 5, is chatty and sunny at home, but when he walks through the school gate an invisible force field suddenly shrouds him’, says Anna CREDIT: HEATHCLIFF O’MALLEY

A quote on the National Autistic Society website sums it up: “If I get sensory overload then I just shut down; you get what’s known as fragmentation… it’s weird, like being tuned into 40 TV channels.” Hence noisy toddler groups, busy restaurants or a free-flow reception classroom can trigger challenging and isolating behaviour.

Concerned about Benny’s isolation from his peers, and being new to the area, I took to Facebook to find him a friend. On the school parents’ page I wrote: “Strange post: my little boy in reception is autistic. He’s calm and communicative at home and plays normally with his twin [sister, Aggy], but is struggling to make friends at school. Does anyone have a child who is quiet, loves trains and messing about in the garden who could also do with a pal? I’d love to host a play date.”

I was inundated with replies from parents of both typically developing children and autistic kids, and some offering to set us up with their friends in the same boat. This showed me that as an ASD family we are not alone. There are other children on the spectrum living on the next road and in the next class, avoiding the same soft-play centres and missing out on the same parties. In fact, there are 700,000 people in the UK with ASD and 2.8 million with a family member on the spectrum. With so many of us in the same situation, it’s surprising how many of us feel alone.

Journalist Jessie Hewitson’s little boy is now seven, but she admits that in the early days she too felt cut off. “I couldn’t meet my NCT group as it became too painful. Mine was always the child that was crying or unhappy and I couldn’t make things better,” she says. “I became detached from friends, as I didn’t have the language to describe what was happening – and for the first couple of years I didn’t know what was happening.

‘We have a train set in the attic and downstairs so he can play in our midst or escape the busy family scene’ CREDIT: HEATHCLIFF O’MALLEY

“When I did confide fears to friends or my family I was often reassured that my son was “normal”, but this just isolated me further. I just wanted someone to take my concerns seriously, but people who care try to reassure you, shutting conversations down and making you feel like you are over-anxious or somehow viewing your child negatively.”

On Thursday, Hewitson published a bookAutism: How to Raise a Happy Autistic Child, to coincide with World Autism Awareness Week(March 26-April 2). It’s a practical guide for parents, including tips on how to make your home more autism-friendly and how to access the right support at school. “The way we view autism is changing,” she writes, “moving from the perception that it’s a terrible tragedy to happen to a child and a family, to the recognition that autism represents a different skill set in the brain function that is no better or worse than not being autistic.”

It takes on average up to three years to get a diagnosis in this country. Once achieved it is not only the key to unlocking funded support in nursery or school (what is known as an Education, Health and Care Plan), but also empowers parents to help and build their understanding.

“I didn’t know how to play with him or communicate – not realising he was autistic – and that created a barrier between us,” Hewitson says. “The diagnosis was a crucial step in helping me with these issues of isolation. Once I knew the words, I could talk about autism,” she adds.

Surely there is comfort in confiding in those who are going through the same thing? Not for everyone. Blogger and mother-of-one Lisa Savage went online to find a support network when her son Oscar was diagnosed. She joined a private Facebook group, Nedintheclouds. “But I wasn’t ready, and hearing other parents’ stories was too painful,” she says. “It made my own sadness even more real.”

Since then she’s followed from a distance, attended an Early Bird training course for parents and carers – run by the National Autistic Society – and made allies locally. She’s now a font of knowledge and ideas. One of her recent creations is a visual schedule board. This has images Velcro’d to it, showing Oscar what they are doing at the weekend. He will take the chart, move the images around himself and is then fully on board with their break from routine.

Savage, who lives in the same part of Surrey as me, did not just want to surround herself with other autistic parents and found her own space when Oscar was at nursery (and now at school). “I go to a coffee shop where I can escape ASD and be myself for a few hours. That’s where I started writing my blog, MrsSavageAngel.com.”

Benny with Anna and Alex CREDIT: HEATHCLIFF O’MALLEY

Via official channels I have found local socialising groups, where Benny can practice interaction in a safe environment. We’re also in the process of applying to attend a Barnardo’s-run Cygnet course which we will qualify for when Benny is seven.

For me, practical advice mostly came from other mums. I was floundering on Google trying to find appropriate activities and holiday camps. One mum who responded to my Facebook post pointed me in the right direction: for example, Challengers in Guildford – a centre for all disabled kids that provides courses and camps – and a special needs trampolining class at the local sports centre, the Edge. Another useful tip was to register Benny as disabled. He’ll get concessions and added to a mailing list of relevant services.

Finding the right school for us was paramount – and fortuitous. Benny and I have both found solace and friendship in his teachers at St Bartholomew’s Church of England (aided) Primary School in Haslemere. It’s a warm school that has welcomed Benny with open arms for who he is. Rather than shoehorning him into the school system, they cater to his needs and as a result he is progressing and increasingly participating. And he’s happy.

They have rearranged the classroom to create a more secluded book corner where he feels safe, worked occupational therapy routines into the day and they celebrate his skills such as very advanced reading and IT. With advice from the school’s head of inclusion, his teachers try different learning techniques, we catch up most days and he has a diary so we can monitor progress.We’re in it together and Benny has a burgeoning team of people who care, including our amazing part-time nanny and supportive grandparents – how lucky we are. We have a collaborative approach and an aim: to make autism a seamless and accepted part of family life but not let it rule us forever. I’m learning to listen to Benny. At five he now tells me when he’s feeling lonely, needs company and when he wants to play on his own. We have a train set in the attic and downstairs so he can play in our midst or escape the busy family scene – although he’s doing that less.

Slowly but surely, through short play dates and adult-led play at school, I’m hopeful he can, in part, replicate his relationship with his sister with some of the other children. Today he is off to his first birthday party since he started reception. He’s very excited, and so am I.

 

 

Thank you so much to Anna for letting me repost this.

Anna can be found on Twitter @twinwag

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