Straws – what do they mean to you?

23rd May 2018 by Leave a Comment

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

 

Filed Under: Autism, Children Tagged With: , , , ,

The Washing Line Prop and the Existential Crisis

27th April 2018 by Leave a Comment

A washing line prop. The long package, wrapped in black plastic, sitting in my kitchen was a washing line prop. A telescopic one dontcha know. A step up from the square wooden prop my Nanna had. The one that lived in a brackets attached to the fence, with a V cut out of the top and duck tape round the middle to protect the hands from splinters.

Mine might be metal and telescopic, but it does the same job. It holds the line up to allow washing to dry higher in the air.

And holding it my hands took my breath away.

I’ve never lived anywhere with an outdoor line. I’ve used metal stand alone airers and tumble driers all my adult life. I’ve wanted a line for a while. Well, since we got our own garden it seemed like the right thing to do. But every time I’ve tried to think about it, I’ve found reasons not to. A whirligig line would block my view, Oscar would pull on it etc etc. But this year (and since we have a new fence to hold it) I decided a retractable line stretched across the garden would be the solution. And then the prop arrived.

I can’t really explain the feeling of holding it in my hands. I’m married, I’ve bought a house, given birth to my son and yet none of those things made me feel the passing of the years like holding that stupid prop. It literally took my breath away and I may have even teared up. Because here I was. A proper adult. With next to no idea how I got here.

I’m not surprised things as innocuous as as washing line prop (which by the way I love. Long line drying is totally where it’s at!) are giving me cause to stop and catch my breath. This is my 40th year on earth and they say people often become more introspective in the year before a ‘big’ birthday. Big decisions get taken, big changes happen (and always one not to disappoint, I got married at 29). And something in me, in my 39 year old self is feeling all these things. Introspective, questioning, anxious, just trying to hold on, in the face of a violently changing tide. Maybe a prop is just what I need to help me do that.

And maybe the part of me that doesn’t want to hold on, that just wants me to let go and change with the tide, knows it too.

And maybe it’s that, that makes me gasp.

Filed Under: Personal Tagged With: , , ,

A Brilliant Bricks 6th Birthday Party for my Brilliant Boy

19th April 2018 by Leave a Comment

Oscar doesn’t do a whole lot at the weekends. Football, Rugby, Swimming, Dance, Performing Arts; the local provision for extra curricular activities just does not work for my autistic son. So when Oscar became old enough to try our local  Haslemere Lego club, Brilliant Bricks, we were cautious. The first time we took him along, we sat in awe, as the children were firstly inspired by the leader, Sarah, and then started to build with gusto. But a really calm gusto! It was magical. And Oscar could join in. He could join in without having to compromise on what he could cope with or stand out because he needed to do things differently to the others. What a treat.

And when we realised Sarah also ran Birthday parties? Well it was a no brainer to book one for Oscar’s 6th birthday. Held in a local village hall, it couldn’t have been any better. It was just like having a Lego Club to ourselves, but with cake and food! And the odd glass of fizz for mama (I always have prosecco for the adults at my children’s parties – why the devil not!)

It really wasn’t too crazy to organise either. The biggest issue I had with the whole party was trying to get RSVPs back, but in my experience that’s often the worst bit about orgainsing any event.

Food

Last year’s party was good, but by far the best idea I had was how to serve the food. What I have found at other people’s parties we’ve attended is that a long line of tables can be intimidating for Oscar (he often ends up sitting on the end) and will only eat from the bowls/plates in front of him. So last year and subsequently this year I put together a picnic bag for each child. These were given out and allowed the children to sit where they felt most comfortable and eat the food in whatever order made most sense to them.

The bags this year had a bag of Wotsits, a Frube yogurt, a snack pack of Oreos and a YoYo Bear Fruit Roller. I was able to put the bags together the bag before and simply hand them out on the day.

Picnics in brown paper bags. The kids loved the autonomy they were given over their food.

I then made sandwiches and handed them out alongside the bags. Oscar insisted he wanted Nutella sandwiches and who am I to argue with the birthday boy? I did convince him to let me do cheese ones as well, just to show willing!!

While the rest of the food was in no way themed (and rather was what I knew Oscar would eat!) I decided on a nod toward the Lego theme with the sandwiches. I borrowed a Lego Head Cutter, bought an Edible Marker. And the result was even better than I hoped!

How cute are these Lego Head sandwiches?

The kids seemed to really like fun sandwiches. Although to be fair they seemed more excited to see I’d used Nutella (sigh!).

Favours

I really don’t like party bags. Don’t get me wrong it’s lovely that people want to give children a little parting gift, but too often (for me) they just contain landfill fodder. Or worse they contain things that should be binned, but Oscar insists on keeping them! So I’ve never done the traditional kind of bag. And this year was no different. In keeping with the Lego theme I decided to make a bag of Lego chocolates for each child.

They were the easiest thing to make. Just get some Lego Brick and Figure silicon moulds (I borrowed mine). Melt some white chocolate, slowly mix in some food colouring (I use the extra strong Wilton Gel Colours), pour it in the moulds, tap to get rid of any air bubbles, scrape the top to remove excess chocolate and pop them in the fridge. Leave them for an hour and Bob’s your Uncle!

The kids loved them! I got a message after the party telling me one little boy loved them so much he wanted to display them on his shelf rather than eat them! How cute is that?!

Cake

So many people asked if I was planning to make Oscar’s cake and I happily told them absolutely not. I can make a decent enough cake, but decorating it is not my forte, especially when Oscar has such specific ideas of what he wants. This year he asked for a cake in the image of the Thomas and Friends Chinese Dragon we got him for Christmas. So I happily handed over the toy to my friend and Haslemere cake maker extraordinaire Sarah of Sarah Bakes Cakes. And boy did she do us proud!!

Just look at that detail! I adore this cake!

Oscar was absolutely thrilled with his cake. When Sarah bought it round the day before the party, he actually squealed in delight and ran up and down the stairs he was so excited. It was the cutest thing! He also loved tucking into the delicious chocolate cake and probably ended up eating up more of the cake than any one!

The Party

Watching thirteen (we invited eighteen but not all could make it and some didn’t show up on the day) 6 year olds quietly and calmly build Lego creations completely from their imagination was a pure joy. The concentration, from those not always known for their ability to concentrate, was quite amazing. Thanks to the support of Sarah and Brilliant Bricks, I was much more confident to let the parents leave their children with me, but those adults who stayed or came to help couldn’t get over how calm the party was. The children moved from box to box sharing the tonnes of bricks Sarah had bought with her, but not being expected to collaborate. This allowed everyone to join in no matter what their capacity or their personality.

Working together and apart

Such concentration!

Sarah bought her ramps with her for the children to race their creations down!

The party was so much more of what Oscar needed than last year and I like to think that reflects how much more I understand him and how to work to get the best out of him. This happy face and amazing Slimer (who is holding a “pizza in one hand and a chicken with a bone in the other”) will, I hope, testify to that.

I don’t think I’ll be holding a party for him next year. I’ve got a feeling he’ll be over them by then and prefer to do something more based around his interests, without having to worry about other children. So this might be the last party I ever host for my little guy.

And if it is, what a high to end on.

 

 

 

Thank you so much to everyone who came to the party or supported me throwing it, in one way or another!

I have included my supplier links as a personal recommendation only. I paid for everything myself. 

Filed Under: Autism, Children Tagged With: , , , ,

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

26th March 2018 by Leave a Comment

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 book, Autism: 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

Filed Under: Autism, Children, Family Tagged With: ,

The End of The World

5th March 2018 by Leave a Comment

Do you keep momentos? Of times, of events, of places? I do. Not masses. At least when I began keeping things it wasn’t masses. But it all adds up doesn’t it. And here I am, staring down the barrel of 40 and suddenly wondering why I have kept the cuttings I had on my wall at 17 and the t-shirt everyone signed when I got made redundant at 26. I’m not a hoarder by any stretch of the imagination, but some of the things I devote my space to would, I’m pretty sure, make most people raise an eyebrow.

I don’t have a big house (have I mentioned that before 😉 ). But I am devoting at least some of this, frankly non existent space, to things that rarely get looked at and have no practical purpose. Which can only lead to me deduce that they have some emotional purpose. Some reason that I choose to let them reside still. Not to let them go.

I’m not one for knick-knacks. I have few ornaments on show or photos on the wall (beyond beautiful ones of my son). So what compels me to keep a corner of my office full of boxes devoted to my youth. Is it a tangible reminder of just that? That once I was young? Or is it proof that not all of my teenage years were horrendous? That loyalty and happiness and love existed? Or is it proof that any of it happened at all? Who am I proving it to? Surely not me. After all I was there! Or perhaps it’s some form of security blanket, fashioned out of ephemera. One I know I can go to, should I need a quick fix. A fix of what though, that is the question? What does any of it mean?

And what would it mean to get rid of it?

Let’s just think about that for a minute. What would it mean to take the stuff, the theatre programmes, the tickets, the clippings, the useless bits and bobs that would mean jack to literally anyone else and just bin it? Anything?

Everything?

I watched the film The World’s End the other day (easy watching fun for fans of Simon Pegg/Ed Wright collaborations). The protagonist cannot move on from the happiest time of his life, so much so that he still drives the same car and wears the same clothes twenty years on. Don’t get me wrong I’m not saying my situation is quite the same, but the idea of hanging onto tangible items in this way really struck a chord with me. As did the idea that living this way, can hold you back from moving forward and living your life now.

I once ate a peach, that was the juiciest, ripest, most delicious peach I’ve ever had. I’ve tried to find its likeness for years but to no avail. The fact that this peach of dreams was eaten on on our honeymoon, on the Greek island of Lesbos, was probably harvested from a tree two minutes down the road and was eaten in the sun, while relaxing, well….. How can any future peach measure up?

I guess what I’m just coming to realise is when you view the past through the tinted rear view mirrors of time (which can only grow rosier the further away you get), how will any subsequent time in your life measure up? Perhaps precious memories, need only to be that. Not a crutch, not a yardstick, not something to aspire to.

And definitely not a box of bits kept in an office at the end of the garden.

Filed Under: Personal Tagged With: , , , , ,