A Kind of Spark by Ellie McNicoll

"When my hands are restless and I need to stim, I now imagine that they contain magic. That the twitchy feeling is just fire trying to get out. If I spread my fingers and blast my palm, a shot of magic will fly out. Enough to show all those who belittle and mock that there is a kind of power they will never touch".

A Kind of Spark by Ellie McNicoll is a middle grade story with an engaging heroine.

Blurb:

Addie knows exactly who she is. Addie knows that sharks are more interesting than dolphins, she knows her favourite words in the thesaurus, and she knows that her older sisters are opposites.

And when Addie learns about the witch trials that happened in her hometown, she knows there is more to the story of these "witches", just like there is more to her. As Addie tries to get her small town to make a memorial for the "witches", can she challenge the way they see her?

Addie lives with her parents and older twin sisters Keedie and Nina in a small town named Juniper. Eleven-years-old Addie is autistic, and so is one of her older sisters, Keedie, who goes to the university. Nina stays at home and lives a pretend life as an influencer.

There is a special bond between Addie and Keedie, as they understand each other's behaviours and issues. 

Addie's friend from primary school Jenna doesn't want to be friends any longer, and gangs up with a nasty bully Emily to taunt Addie. 

Miss Murphy is a teacher from hell, who has no understanding of Abbie's condition. She's so awful that she's bordering on the caricature.

On the lead up to Hallowe'en the class is studying the topic of witches and witch-hunting. It so happens, that some of the women tried for witchcraft came from their village. 

Addie is feeling angry and upset. "The unfairness of it sits in my stomach like a stone. I imagine women being frightened and alone as they are thrown into the cold water..."

She escapes to the library, her safe place, to find as much as possible about the witch trials in Scotland. A new girl in her class, Audrey, offers her help with the research.

Addie comes up with a plan to create a memorial for all those wronged women. She attends the Juniper village committee meeting to propose a memorial - "a plaque or a statue that commemorates the people that were unjustely sentenced to death". The idea is not met with enthusiasm, as it might tarnish the reputation of the village. Undeterred, Addie doesn't give up, she plans to raise the same issue at the next meeting and keep campaigning around the village.

School life becomes unbearable with the bullying by both the students and Miss Murphy. 

In the meantime, Keedie is having a tough time at the university and experiencing a burnout.

How can Addie help her sister, and make the villagers support her idea of the memorial for the wronged women?

A Kind of Spark was the winner of the Waterstones Best Book for Younger Readers and Overall Winner in 2021, and winner of The Blue Peter Prize for Best Story 2021.

I wanted to love this book, I truly did, but its kind of spark didn't quite put its magic spell on me.

The target audience is possibly lower middle grade, with a very simple language and a lot of explanations of easy words like "acute" or "a curse". I do enjoy reading middle grade/YA fiction, and it just didn't click. I think it might be the cutesy tone that slightly put me off.

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Positive elements: an image of a girl on the spectrum (there are quite a few fictional accounts of boys with autism). Both Addie and Keedie are autistic, they present different grades of the spectrum, with Keedie being able to pass as a neuro-typical in her later years (and finding it very strenuous). 

Addie insists on being called autistic, rather than having autism. But that is Addie. Reading extensively on different forums and social media, many people on the spectrum prefer to be called people with/having autism rather than autistic.

It is important to have books with diverse characters. Learning empathy and standing up against bullying are some of the messages of this book. And most important, being yourself, not trying to mask and being something else which is alien to you.

Addie speaks with a humourless directness, which is endearing and refreshing. Her inability to read social cues makes her awkward and makes her rely on the formalistic rules of behaviour. But empathy is her forte. Reading about the witches, she is able to sympathise with their ordeal and suffer emotional and even physical pain.

This story is a source of behavioural signs and signals of autism that neuro typical people might not be aware of. Ultimately better understanding of the condition might lead to a more universal acceptance. Addie talks of how difficult it is sometimes to cope with everyday stimuli, "Loud noises make my head spin, they feel like a drill against a sensitive nerve".  "Stimming is something I do when I'm overwhelmed. My hands fizz and flap, my limbs become restless... There could be good stimming, there can be bad stimming, but a lot of time I have to hide it".

Children should be aware of what neuro diverse behaviours are in order to understand, empathise and not bully.

For example, while queuing in the cafe last week I observed the following scene. My husband was sitting at one of the tables with our son who's severely autistic (non verbal and easily agitated). A family arrived with three primary school kids, who sat at the table further away. The children were screeching at the top of their voices, and our son started to make distressing sounds. One of the boys saw him, laughed and started copying the sounds in a mocking way. The mother spotted that, left the queue, came up to him and whispered something, thankfully he stopped his taunting. 

Negative: Addie's inner thoughts are often overly didactic. Not sure, if this is intentional, as part of her autistic personality, or inadvertent.

An abundance of ignorant class mates and insensitive unsympathetic adults who are cruel towards the neuro-diverse characters is irrational. Nasty Emily, Addie's class mate, is a poster girl for ableism. Jenna is not much better.

Ms Murphy might not be in the same category as tyrannical Miss Trunchbull from Matilda, but she is getting there. Would a modern day teacher behave like this? ripping a student's work apart in class and mocking their disability?! 

I don't deny that there are ghastly people who should never be allowed to work with vulnerable children. Our son has had some encounters with horrible people in the past, but that was dealt with. Overall, he has been supported and cared for in all school settings by people who genuinely love their job and students. 

Finally, I wasn't keen on the parallel of "othering" people with autism in modern times with those unfortunates who were accused of witchcraft centuries earlier. It didn't work for me as a plot device. 

It's over-simplistic to explain the witch hunt by fear of otherness. There were many factors, from political to social reasons (for example, widowed or single women as a financial burden for the community), greed, women's sexuality (which is not a topic for the children's book) and many more. 

Books like A Kind of Spark spread the message, give an insight and teach compassion and kindness.

Autism: a little glimpse into our life

This was me, earlier today, trying to keep calm but feeling despondent. Sash is supposed to go overnight to a residential home today, and as it's a change of routine, he's been rather agitated to start with, even though he enjoys visiting the place. His anxiety turned into a full-blown meltdown, when the school transport didn't arrive. We were all dressed up and waiting, with Sash pacing nervously by the door.
I called the transport, but apparently the driver got the wrong idea, and decided he didn't need to pick us up this morning. It took another 40 minutes for a different car to arrive, by which time Sash was distraught.
I've been reading the latest book by Naoki Higashida "Fall down 7 times get up 8" recently, mostly dipping in, I still want to read it properly. Naoki is a non verbal young man with autism. His books give an invaluable insight on what it is to live with autism.
"When an agreed time is altered or a destination is changed at the last minute, I can act as if the sky's falling in. I need time to accommodate my inner state to the change of plan"
That is exactly how it feels, when I observe Sash and his adjustment, or the lack of it, to the change in routine, plan or timing.

Despair by Marie Bashkirtseff

Having a child with autism is like playing a Russian roulette on a daily basis, or walking through the minefield. You never know when the next explosion is going to happen.
I stopped visiting autism-related forums, as there is too much pseudo-cheerfulness and forced optimism going on - along the lines of "Proud to be an Autism Mom. I wouldn't change a bit of my child, s/he is blessed by God, blah-blah-blah".
Quite a lot of people on the high end of autism would say "I have autism, and I'm fine". Yes, you are, if you can communicate and express yourself, you can read and write, and obviously are on a high-functioning end of the spectrum.

We - and as autism affects the whole family in our case - are on the rigid, extreme-anxiety-ridden, noise-sensitive end of the spectrum. And life is hard. For my younger son, who has to adapt to his brother's way of life and having to sacrifice a lot. For us, parents, but most importantly, for Sasha himself.
If I could change my son's condition by some magic, I wouldn't think a second. Purely for his sake.
Our lives are ruled by his condition, but how much more difficult it must be for him. Being him.
I cannot even comprehend what it is not to be able to talk. How frustrating it must be not being able to say how you are feeling, or if something hurts - if you have a headache or earache, if you are cold or hot...

To be frank, there are days when I feel an acute despair, and even this morning I thought: "Just shoot me, that would be more merciful". But that is a very self-indulgent thought, and not kind at that either.
When Sash was diagnosed with autism, it was a huge blow, like the end of the world. I was suicidal. But I had to plod along. I went to the GP and asked for help.
I had some counselling sessions, which helped to some extent, at least to look at my life from a different angle and taught me some coping techniques. I can't say it works all the time.

There are days when I'd like to escape. I fantasise of leaving it all, but I know I can't. I'm a mother.

Why am telling you this? Isn't this blog all cakey-bakey, tea, books and toys?!
I'm not looking for sympathy, just for understanding, what it is, our life with autism.
Please don't tell me when we happen to mention our son's condition that he must be a genius. And don't pat me on the hand, saying: "What a shame! What a pity!"
There's no shame. And I don't want your pity.

Another phrase that sometimes makes me wince: "I can only imagine..."
Actually you cannot, unless you have a child with special needs yourself or work with them, You can never imagine how unrelenting the exhaustion can be. How deep the sadness.

And another gem:
"But at least your other child is normal..." Yes, that's a consolation.
or
"You are very brave to decide to have another child..." (told to me by quite a few people when I was pregnant, who knew about Sasha's condition).

Just be kind and considerate to people like us. Kind words uplift people.

This photo taken by Sasha during our recent flight home from Italy is a symbol for me.
We're adrift among the clouds, and sometimes we don't have the foggiest of where we are going.
But there is light too... there is always hope.

The story that should have never happened

I'm very glad to say Farewell to May. It has been a stressful difficult month for our family, especially our older son Sasha. He is severely autistic and non verbal. Any change from routine unsettles him.
His thinking is very rigid. The shampoo bottles should be just in one place in the bathroom. If I turn the toothpaste the "wrong" way, he would always turn it back. Action sequences are often ritualised, and routines are to be followed, or he gets very upset.
When we learnt that our trusted school transport team wouldn't be working with the school any longer (sadly, the company went into liquidation), I thought it would be a big problem for Sasha to adjust to a new team. Little did I know just how big a problem it would be,
Since there was little time between the company stopping work and finding new transport teams to take children to school, people without any experience of work with special needs kids were hired.

The first day Sasha returned home after school, he was very agitated and  unsettled. The bus driver complained about his behaviour, accusing him of hurting his female assistant (I will refer to her as FA). He said he compiled a report on him. He was very brusque with me, to the point of being rude, and said they might not take Sasha to school any more.
We called the school, and the teacher who observed what has happened said he pushed the FA as she was hovering over him. The teacher reassured me that they would be working with the transport team and explain to them about autism.
The FA told my husband that she couldn't sleep in the night, that she was short of breath and needed to go to see the doctor. At which point my radar started buzzing an alarm.
But we have apologised to the FA and driver for all the trouble.

He continued travelling to and from school with these people, who were absolutely unsympathetic. Sasha's behaviour in the meantime was getting worse and worse. He refused to go in the classroom, locking himself in the toilet to escape people. At home he started hiding in the airing cupboard, again locking himself in, which he has never done before. He looked very miserable, and my heart was breaking. We were very worried and didn't know how to help him.
The school were anxious too as Sasha's behaviour has changed dramatically. He has been doing so well this year at school, and suddenly he didn't want to take part in any school activities,
His anxiety was palpable, and he kept pointing to the symbol of the school bus in his social story.

After the second complaint from a driver the week afterwards, I said I'd walk with Sasha to school myself.
Unfortunately, it was not a solution. My husband commutes to work, and cannot take our younger son to school every day. And both boys attend schools which are in totally opposite directions.
Walking with Sasha to school was so difficult, as he was distressed - it was yet another change of routine for him - that I dissolved into tears in the presence of Sasha's teachers. They were most kind to me, calmed me down, listened to me and offered to help, saying that they would talk to the transport team again.

After struggling for a few days, we reluctantly agreed to send Sasha to school on the bus.
You might have seen these school buses for special needs children, they are not big in size and carry several children at a time, and two adults - a driver and an assistant.

Poor Sash would arrive home in tears, and my heart was breaking to see him so unhappy. When I asked the transport if it were possible to see the CCTV footage, they explained to me that the cameras did not operate.
How irresponsible is that?! The cameras should be working for the protection of both sides.

After I read their reply, I decided we needed to do our own investigation. I ordered a Spy Voice recorder on amazon. It is a tiny gadget, which looks like a USB stick, and can record up to 17 hours in one go. It is easy to charge and operate.

In the morning we put the voice recorder in Sasha's school bag, and waved him good bye. I felt quite bad about spying on them, but had no other choice really.
In the evening, my husband and I listened to the recording together. I had to go back a few times to listen again and again, as I couldn't believe what we heard.
Our vulnerable child who couldn't defend himself or tell us what was going on, was verbally abused by the FA. The driver didn't say much, but he was complicit in my mind, since he made no attempt to stop his FA.

We will never know what has really happened on the days when Sasha was travelling with them. We only recorded one day, but even one day was unbearable enough.

The FA kept taunting him with words like this "I'm bored. You're here to amuse me (telling this to all children). Then to Sasha - You're not, you're rotten little thing. You're rotten, rotten through and through. Aren't you?! You will never be my cherry berry muffin. You would be the cat litter tray, that's what you would be". She also laughed at him, saying that he was "probably ripped that and all, ain't he".
She kept clapping her hands and bothering other children on the bus, clearly to amuse herself.
Sasha was quiet at first, but she kept baiting him to provoke a reaction. It was like baiting a chained animal, knowing perfectly well he could do nothing in response.

It was difficult to listen to that recording as Sasha was getting more and more upset, and none of the adults made any attempt to reassure him.

I was shaking, listening to that woman. In fact, after it ended, I ran to the toilet to throw up.
You trust these people with the most precious in your life - your child, and find out that they abused the position of trust.
How could you say that to any human being, let alone a vulnerable child?! Such vile, despicable attitude! Knowing perfectly well that they were safe from anyone reporting them, with most children on the bus being non verbal. These people should never be working in a position of trust.

We emailed the head of the school at once with the copy of the recording, as well as the social worker who helps us. The head got in touch with the safeguarding team. The driver and the FA were suspended while the investigation was going on.

It was decided that the FA would lose her badge and would not be able to work in the position of trust. The driver who claimed he didn't hear much of what she was saying, would have to do an additional training. He was also remorseful during the panel meeting, while the FA was unrepentant.

A small victory, yet at what cost.
It will take a long time for Sasha to get back to his normal self. He also got such a bad skin rash due to stress that we had to go to the doctor. But that will be cured. It's the inner scars that take a long time to heal

As for the audio recorder, this was the best £15 I have spent in my life. Without it we would have had no clue as to what our son was subjected to, though sadly we'll never know what happened during the days we haven't recorded.

I have been thinking hard whether to talk about it on my blog or not. I might change my mind, and remove the post later. We are all feeling violated.

P.S. I should also add that I am most grateful to Sasha's school - head and teachers, and our social work for all the support and help in this dismal situation.

One of Sasha's selfies from a few years ago

        

Choc chip oat cookies for Flora Lunchbox Challenge

Making a healthy balanced meal for a child's lunch box might not always be easy, if you have a fussy eater. It's even more challenging, when you have a child with special needs.
As you might know from reading my blog, our older son Sasha is an autie. Children with autism often have restrictive diets due to their condition. With Sasha it is literally either a familiar food he would agree to eat or nothing. People who have no experience of autism sometimes give unsolicited advice, feeling superior "If he is hungry, he will eat, he won't starve". Actually, he will.
Last year he stayed for four days on a residential in Bristol with his class. I packed some food with him. They stayed in a hostel, without a fridge, so it was impossible to send enough food to last for four days, and the teachers were hoping he'd be eating with the others when they were going out. I was worried that he wouldn't eat, and he didn't eat much. He had chips and some of his sandwiches, but that's about it. He came home thinner than he left.
When Sasha was younger, we went through a long line of specialists including visits to the nutrition clinic in the children's hospital. When they asked us about the foods he wouldn't eat, I said it would be much easier to say what he would eat. In the end, we decided that though limited, his diet is not that bad, as he does eat some fruit and vegetables, and I cook a "super soup" for his dinner, which is packed with vegetables and pulses.

When we travel, feeding my autie becomes more of a challenge. In Italy, for example, he refuses to eat the local bread. For all the variety of wonderful breads in Italy, they really don't make good sliced bread. So, it might look strange, but one of our suitcases is packed with several loaves of Warburton's bread, as well as enough tuna pate to last a week. Sasha loves tuna pate sandwiches. I don't know what would we do without it.
I have tried all the other possible pates - chicken, mackerel, trout, salmon etc etc - he would sniff them and put back on the plate. Back to tuna pate then.
Tuna pate sandwiches are his staple food, he has them for breakfast, he has them in his lunch box. He has them for his birthday, he has them for Christmas.
It always makes me sad that when we tuck in into our Christmas dinner, he just wants his tuna sandwiches.

To make his lunchbox a bit more interesting, I add some home bakes, like a slice of carrot cake or a multiseed muffin, a few choc chip cookies or a cupcake.
Thankfully, his school is understanding. I often read online about the school lunchbox police who do not allow children to have any sweet foods in their lunchboxes.

Sasha loves my bakes. When I make a batch of cookies, I have to ration them, as he would gobble them up in one go (that happened once or twice when I wasn't quick enough to hide the cookies).

When it comes to cookies, I love baking with Flora. If I use plain butter, my cookies often tend to end up quite flat and spread out. Flora keeps the cookies in a good shape, and they taste delicious too.

For Sasha's favourite choc chip oat cookies you will need:
100g soft margarine
100g caster sugar
65g jumbo oats or one MOMA porridge sachet
165g self-raising flour
1 egg
50g of chocolate chips or chopped chocolate
Sometimes I also add 1tsp of vanilla essence.

I have tried different kinds of chocolate in this recipe, from Menier cooking chocolate, either milk or dark, to Sainsbury's Basics milk chocolate, so you can make it as budget as you like.
Cream the margarine with sugar in a mixing bowl. Add the flour, oats and the beaten egg, mix well, forming the dough. Knead lightly on a slightly floured surface, roll out to 6-7mm thickness, cut out the biscuits with cookie cutters, place them on the trays lined with parchment paper or foil and bake for about 15 minutes until golden at 180C. Don't overcook, they are still very soft when you take them out.

These cookies will keep well in a cookie tin for a few days, that is if they will last that long.
They might not be the healthy food exactly, but they are made with oats and Flora light, so actually they are not bad at all.

Flora has developed an inspiring Lunchbox Guide for healthy eating habits. This guide is a helpful source of ideas for creative and healthy lunchbox meals including this lunchbox builder:

Image credits: Flora

There is a page of top tips for fussy eaters, a 5-day lunchbox plan  + a 5-day lunchbox plan for vegans and much more.

This post is an entry for the #FloraLunchbox Linky Challenge, sponsored by Flora. Check out their lunch planner and recipe ideas here.

Disclosure: We received a Flora lunchbox and a £5 Tesco voucher to spend on the ingredients. All opinions are ours.

The Boy and the Sea

Why do we love the sea? It is because it has some potent power to make us think things we like to think. (Robert Henri)

Sasha loves the sea, he is at his happiest, running in the waves. He cannot stop grinning, the sea makes him that happy.
He flaps his arms in excitement, like auties tend to do. He hums and laughs aloud.
But the sea is wise, it doesn't judge.
The sea could be a harsh and cruel entity, but Sasha does not fear it. Danger doesn't cross his mind. That's why we have to watch him closely, so that he doesn't wade in the sea too far. He can swim, but you can never trust the undercurrents. But that is our worry, not Sasha's. He feels in his element in the sea waves.

He feels an affinity with the powerful tides.
He even likes the taste of the sea.

He is free from restraints of convention, he can run and run and run, splashing in the waves, not minding if it is cold. For him nothing else matters at that moment: just the sea and him, and freedom.

Over 8 years ago, when I was in a habit of scrapbooking, I did a page of Sasha by the sea, and wrote:
"Sasha loves the sea, he treats it like a live creature, smiling to it and laughing at the sea's tricks. To him the sea plays with him personally. We have that mental image of Sasha thinking there's someone in there who rolls the waves for him".
I also wrote a text on the tag: "You're so in tune with nature, in perfect harmony with the waves and the sun, enthralled by the physical properties of nature, in intimate relationship with the elements, so much in love with the balance of the sea, the sun and the sand".
It is still the same, that love of sea.

If Sasha would have read Faust, I imagine he would exclaim like Goethe's hero "Verweile doch, du bist so schon, - Linger a while, you are so beautiful" while standing amidst the rolling waves.

Old netting on the shore

High tide

Nominated in the 2015 MADS

If I say 2015 hasn't been my year, I won't be too far from the truth. Family issues are piling up, most of them revolving around our older boy who has reached puberty. His autism has become more acute, and every day is a struggle on many levels. He is much-loved, but oh boy, how difficult he has become.
It started just before Christmas time, and what I was hoping was just a stage, is not getting better. If anything, his sensory intolerance is getting more pronounced. Mornings are a battle: to get him out of bed, make sure he has had breakfast, getting dressed and then getting out of the door. He categorically refuses to be in the same room as his younger brother. As soon as he comes home after school, Sash shoots up the stairs to the attic, to avoid been with his sibling even for an extra second.

It's very sad. Just today, when we were coming back from a visit to the Cogges manor farm and met a friend on the way home, Eddie said: "Sasha doesn't want to be with me". I need to remind myself how gentle Sasha used to be with Eddie, how nicely they played and laughed together. I look at the older photos, and No, I didn't imagine that brotherly love and affection.
This is one of my favourite photos, when Sasha hugged Eddie. His smile is so beautiful.

Or this one, when they jumped on the bed, wearing matching pyjamas, and laughed their socks off

But then things have changed. We don't know what has caused this intolerance... As Sash is non verbal, he cannot explain to us why he avoids his younger brother. And it breaks my heart...

On top of that, the meds I have been taking last year, made me gain quite a bit of weight. And though I stopped taking them, I cannot seem to shift the gained pounds.

A dear friend of mine who's been ailing quite a while, died over a week ago, and I blame myself for not visiting her often enough in the last year. I saw her just two days before she died in her sleep, but I should have done more, despite my own problems.

Then there's these depressing elections...

My blog has been my salvation and a creative outlet, when I'm feeling blue. In a way, it is my escapism, my little corner of the universe, where the world is a tiny bit brighter. There are days when I feel like I had enough, and maybe I should close down the whole shebang. But then I think I will miss it too much.

I have been so much absorbed in my own issues and problems that I have totally missed all the awards and nominations.
Imagine my surprise when I received a tweet yesterday that I was among those nominated for the Best Writer category in 2015 MADS.

I am most grateful to whoever thought of me as the Best Writer. I am deeply touched, as I certainly don't think of myself as being a writer, especially the best.

Thank you for reading my blog! Without you, my readers, I wouldn't be able to go on.
I'll raise a cup of tea and share a big cake with you!

Silent voice of autism

Sasha's selfie

Just because they watched a few films and read a couple of articles on autism, some people presume that all people on the spectrum are savants with exceptional skills and abilities. Just the other day my Mum met someone from my old school who asked about me and said "Yes, we know that one of her boys is a genius". It doesn't help that parents of children on the spectrum like to endorse the myth by sharing all those pictures on Facebook and printing mottoes on t-shirts that Leonardo, Michelangelo, Einstein were autistic. First of all, you cannot make a diagnosis centuries later. Second, for every "Leonardo", there are thousands and thousands of children like my boy who are non verbal, socially inept, with big developmental delays and extremely difficult behaviour. Let's just say I don't find these "positive-thinking" slogans helpful.

Sasha's still life photos

That doesn't mean I cannot find any positives in Sasha's autism. I believe his world outlook is different, and he has a good eye for detail. He finds the beauty in the most mundane things, and that is a gift. He can be fascinated by an object, and examine it, taking photos in different light of the day, like that fitted sheet on the radiator in the attic where he likes to hide. He took photos of it through the day, as the light was fading.
He doesn't arrange the objects artfully, he takes photos of them as he finds them.

Some of his compositions make me think of the minimalist art. You or I would pass by those objects without a second glance, but Sasha thinks they are worthy of our attention.

He likes the simple patterns and arrangements but he also doesn't mind the mess. In many ways Sasha is still a very young child, he enjoys the stories like The Gruffalo and Tiddler, he watches Kipper the dog on Youtube and probably will be watching it when he's in his 40s. Yet his photos show a mature side of him, his appreciation of the world around.

Old window in the attic and floor pattern in the bathroom in Italy

But it's Sasha's selfies that I find the most endearing. He is 13 now, a difficult age for any neuro-typical kid, and much more challenging for a child with autism. Body changes are confusing. My boy is as tall as me now, and soon will be even taller. He might be as big as me, but inside he's still a very young child, confused and often frustrated, scared of the changes around him and inside him.

By taking numerous selfies, it's as if he's searching for answers "Who am I?". Some of them are fragmental, you see the glimpse of a smile, or just part of his face. It's a study, research into himself. 

Sasha's non verbal. His ipad is a way of communicating with the world. Not that he shows his photos to us. 

His selfies show different moods, there are some smiling images, there are pensive ones. There are also some upsetting self-portraits, when he has been distressed and crying, with tears running down his cheeks or a hand grasping his head in despair. I couldn't share those photos on my blog, they are too poignant and vulnerable, and they make me so sad. Living with autism is very challenging. And profoundly life-changing for the whole family as well.

He often favours the technicolour photo settings on his ipad. I found a whole series of photos he made recently, where he holds little Gruffalo books above his head. It is clearly a message of some sort, and I wish I could guess the importance of this message.

So here he is, not a Leonardo, not a Rain Man, not an Einstein... My lovely boy who is as unique as any other person with autism.


If you found this blog post interesting, you might want to see the other posts about Sasha's photography on my blog - see The fragmented world of Sasha and Sasha's Selfies.

How Frozen saved my sanity at Christmas time

So she's a bit of a fixer-upper...

They say Don't build up high expectations for a perfect Christmas day, and I don't. In fact, I am hardly an optimist, I tend to expect the worst. And sometimes those expectations of the worst actually pale in comparison with the reality.
It so happened that back in summer my husband managed to convince me that we should spend Christmas with his parents in Italy. We booked the tickets way in advance, then had to change the return flights for a totally extortionate amount of money. We flew with BA, and incidentally, the food was quite atrocious. If you didn't fancy a chicken sandwich, there was absolutely nothing else. Good saving for BA, as from four of us, I was the only one to try the sandwich. And the coffee was like dishwasher dregs, vile. But that's just a minor irritant of the whole stressful week of the season to be jolly.
With Sasha's autism, everything has to be planned in advance. I took with us all his meds, and food too, like tuna pate and Warburton's sliced bread, because he wouldn't eat any of the wonderful Italian artisan breads and their sliced bread is not very good. We packed his favourite books and DVDs, snacks and of course his ipad. Travelling is always stressful for everyone, but when you have autism, it is treble-hard. Yet Sasha loves being on the plane. It's the airports and waiting that he finds the most difficult to cope with. The crowds and noise make him upset. But we managed relatively well for all these years to travel with him, and were hoping this time would be more or less the same.

I prepared myself mentally and psychologically to any possible eventuality. But the reality turned to be much worse than my expectations.
Sasha fared relatively well through the ordeal of the check-in and passport control, we have to hold his hand as he tries to escape. It's as if he has this strong urge to run somewhere, he knows not where himself. And being almost as tall as me and strong, it is not easy to keep him in one place. Later we had a semi-peaceful lunch at the Giraffe's at Terminal 5. Sasha watched the crowds from above, turning his back to us, and that was the symbol of the week to come.

He spent most of the time in Italy, hiding away, whenever we tried to be with him, he would withdraw into another room to escape our company.
I knew he wouldn't sit with us for Christmas lunch, and I found it very sad that on such a day my beloved boy didn't want to be with us. He was more content to spend the day in his room, with his ipad and tune pate sandwiches and biscuits.
Sasha was very moody and it didn't help that the Internet connection was very poor. Thanks Vodafone for the lousy service - 40 euros for a week of rubbishy connection.
He used to enjoy our walks around the town centre, visits to the book shop and cafes, but this time it felt like he wasn't happy anywhere we went, and this was so sad. I felt like I have failed my son completely by subjecting him to a trip he didn't want.
The whole week we were walking on the eggshells so as not to trigger any meltdown.
I was bracing myself for the flight back. We travelled to the airport in a taxi, and Sash was annoyed with the chatty driver and kept pushing me, as if it was my fault that the driver liked to talk.
We planned to get to the airport with just a spare hour before the flight so that we wouldn't have to spend any extra time there.
All the hell broke loose, once we reached the final boarding area. Sasha had a meltdown of Gargantuan proportions. He screamed, he cried, tears streaming down his red cheeks, he pushed us, trying to run somewhere. God, it was awful. People were staring, not without compassion but obviously dreading to have a neighbour like that on the flight. Two police women came up to us to ask what was going on. It was a grim moment indeed. We were so worried that we wouldn't be allowed on board with such a distressed child. We split the passports and boarding passes. Eddie and I went first, my husband stayed behind with Sasha to be the last ones to enter the airplane.
Thankfully, by the time they got in, Sasha calmed down. He was a total angel during the flight, and kept kissing my husband on the cheek, apologising in his silent way for the stress he caused.
I know he understands the limitations his condition brings along, but he cannot control his outbursts.

And it is with a sad heart that I decided that we won't be travelling together again. Ever. When Eddie is older, I will let him travel to Italy with his Dad to see his grandparents but Sasha and I will stay at home.

During our week of "Italian holidays", when I could hardly relax for a minute, it is small things in life that kept me sane, like a quick cup of latte in the local cafe, beautiful streets of the old Renaissance town decked in garlands of twinkling lights and Frozen.

I resisted buying a Frozen DVD for a long time, thinking that with two boys I wouldn't need it and that it was only a girlie stuff. Yet Eddie kept mentioning it, as his mates kept having Frozen-themed birthday parties. I bought the DVD, and squirreled it in the suitcase to give to Eddie as a Christmas gift. We watched it first after a Christmas lunch (which left me quite sad, since my older son didn't want to do anything with it). We watched it probably twice a day every day while staying in Italy. By now I know most of the lyrics by heart, and Eddie and I keep singing bits and pieces aloud. I swear its gentle humour saved my sanity in those days, when I was often on the verge of tears.

If only there were trolls who would have fixed our frustrations and angst, and made my boy happier.

Fears

I could hardly sleep last night, my fears and anxiety keeping me wide awake. My son Sasha has gone on a residential trip with his school today, and I won't see him for three days.

I have never spent a night apart from him, except for three long nights when I was in the hospital, giving birth to Eddie. But then Sasha stayed at home, and my Mum looked after him, when my husband visited me.
Sasha has been very excited all day yesterday and kept showing me the photo of the place where they were planning to stay. He was all smiles, and I tried to smile back to him. He has never slept outside his home without us. When we go to Italy or Cornwall, we are always there, just next door, to reassure him at night, if he feels worried. I know there will be an adult supervision at the residential, but it won't be us. Who will tuck him in bed for the night? Who will give him a hug if he has a nightmare? Who will read him a story before bedtime? How will I survive these three days and nights, worrying for my boy? And more importantly, how will he survive? He is twelve now, and is almost as tall as me, but he is so vulnerable. Being non verbal, it is hard for him to make the other people understand what worries him, or upsets. His autism could be too big for him at times, when he feels overwhelmed with the sounds and experiences. He doesn't understand the time, it is an abstract notion for him. What if he thinks that we sent him away for good?
How will he cope?
I'm very tense. I do try to tell myself that he enjoyed the residential so much last year, but then he only went for the day trips and came back home for the night. For weeks afterwards he kept showing me the photos of the social story of his trip, he loved going to the Bristol science museum and the planetarium, he had lots of fun at the skating rink. Yes, I know all that, and I have no doubt he will enjoy the day trips. It is the long nights that put a great fear in my soul. These nasty fears creep into my thoughts and invade my mind, making me almost paralyzed.
I will gladly pray to any God or deity to keep my boy safe and me sane. Grant me patience and calm down my fears! But how am I going to sleep without my boy at home?

Boy-Island

It is very trendy these days to portray Russia as the axis of evil and condemn all the Russians en masse. That's a mistake that the politicians with their own agendas do, and the common people follow. In the last few years I am yet to read anything vaguely-positive about Russia. Yet this is a country which has an incredibly rich culture and is full of inspiring stories. It truly pains me that because of the dirty political games on both sides there is a fear that my Mum and I might not be able to see each other again if she is not granted a travel visa this summer. For many years she has been doing her heroic journey, travelling for 22 hours by train to Moscow and from Moscow to London by coach. Several days of travelling, for the sake of seeing her daughter and grandchildren.
My Mum, Lyudmila Kravchenko, is a talented artist. She is well known in Russia. Enamel is her choice of art technique, and she has inspired and taught many younger artists.
Her personal exhibition will be soon open in the city of Perm.
Today I want to share with you one of her enamel pieces. It is a portrait of my son Sasha.
My Mum called it "Boy-Island".

You cannot question the great minds of this world, and John Donne is famous for his beautiful haunting line "No man is an island".
Yet as a Mum of a son on the autistic spectrum, I could hesitantly argue that that's how it feels sometimes.
Here he is, my beautiful boy, sitting by the seashore, so close and so distant.
He is alone, immersed in his world, often aloof. He is not a faraway island, but a small isle next to the big land, a bit like St Michael's Mount, which is separated by the tides from the mother land. When the tides are low, you can walk to the island and reach him easily. When the tide is high, we are separated by the deep water and the waves of frustration, anxiety and misunderstanding.
And that's how my Mum sees it. Interesting enough, the original image of Sasha was taken during our trip to Paestum, an ancient Greek town in Italy, and in the photo he's sitting on the dry land among the ruins of the past.
My boy has just turned twelve. All these years I try to run across to him, battling the deep waters of the tide and the seaweeds that lash your feet.

Debunking myths about parenting children with special needs: #ThisIsMyChild Campaign

I am not a frequent user of Mumsnet, I have registered there a while ago, but hardly ever pop in there (not because I have any personal issues with any of the mumsnetters but because I couldn't find much of an affinity, which is probably my fault as I haven't tried hard enough to socialise). However, their latest campaign #ThisIsMyChild which is debunking the myths about children with special myths is something I feel very passionate about.

As a parent of a special needs child, I have had my share of unpleasantness, mainly the stares and unsolicited advice from people who do not understand my son's condition. Autism is not a visible disability, as my son looks the same as his neuro-typical peers.

We - parents of special needs children - almost take pride in acquiring a tough armour of steel which should withstand the onslaught of malicious comments and evil looks, but this suit of armour is unevenly patched, and is easily pierced through by an unkind word.
It still hurts when people say You're a bad parent or Your child is a spoilt brat, or even with a pseudo-sympathy in their voice It must be so hard for you, why don't you send him to a boarding school?

We are human, and we are vulnerable to negativities.
Please keep that in mind when you see a child having a meltdown, or flapping his arms agitatedly. You don't have to offer any help. A smile of encouragement would be plenty. As long as you don't criticise or move away with a look of disgust as if it is contagious.

Click on the image to enlarge it.

To find out more about the campaign please visit the page Myths about parenting children with special needs.

Sasha's selfies: a glimpse in the silent world of autism

The other day I mentioned the splendid book "The reason I jump" written by a Japanese young man with autism Naoki Higashida and introduced & translated by David Mitchell. This book should be on the must-read list of books for all professionals working with autistic children. I thought I knew enough about autism, having read extensively on the subject and from a personal experience of having a son on the spectrum but in many ways this book was an introduction to a different perception of life.

It is a fascinating account of what it is to live with a challenging condition.

One of the questions Naoki asks himself is "When you look at something, what do you see first?" Reading his answer for me is like reading the mind of my own son, who is non verbal and cannot tell me, but I feel it is very close to how he perceives the world:
"When you see an object, it seems that you see it as an entire thing first, and only afterwards do its details follow on. But for people wit autism, the details jump straight out at us first of all, and then only gradually, detail by detail, does the whole image sort of float up into focus"

Self-portrait

"When a colour is vivid or a shape is eye-catching, then that's the detail that claims our attention, and then our hearts kind of drown in it, and we can't concentrate on anything else".
That's exactly how my son Sasha sees the world around him, the details take over and claim his attention.

The whiteness of the ceiling and corners (cottage in Cornwall)

Patterns and shapes at home

"Every single thing has its own unique beauty. People with autism get to cherish this beauty, as if it's a kind of blessing given to us". How very true, and how poetic. I do believe it is a blessing and a talent to see the beauty in mundane things. We are so often in a hurry that we don't notice that the most simple things could be interesting enough to stop for a second and look at them.

A fluffy rug in the bathroom is a worthy object of attention (cottage in Cornwall)

Unlike most of the neuro-typical teenagers and pre-teens, Sasha is totally unaware of the celebrity culture and its trends, so I cannot say he has been influenced by the latest craze of selfies created daily by the minor celebs and big-time stars. He simply tries to figure out what and who he is. His ipad is his best friend and a tool of communication. He doesn't share his photos on Instagram, he doesn't even show them to us. It is for us to discover which new images appear on his ipad. It is not the vanity that makes him take the numerous portraits of himself. He is rewriting himself, it is his way of talking to us about what he feels and thinks.

These are all recent selfies taken during our week in Cornwall

Who am I? What am I? Can you understand what's going on inside my mind?

I wasn't aware that Sasha was taking my photos (cottage in Cornwall)

I have written about Sasha's photos and how the discovery of the huge amount of his photos on the ipad allowed me to have a glimpse in his inner world (see my post The fragmented world of Sasha). There are hundreds of photos taken by Sasha, mostly of the everyday objects, an inanimate world. He would take a dozen of images of an object, as if saying: "This is a cup. Look at it! Have you actually looked at it the way I do?"
His images speak to me of an insightful inquisitive mind, a kind soul with an appreciative eye for beauty.
A glimpse in the silent world of autism.

Swimming with the dolphins: one can dream

I have recently read a truly remarkable book "The reason I jump" written by Naoki Higashida who is severly autistic. Naoki gives an insight of what it is to be autisic. One of the chapters in the book answers the question "Why do you like being in the water?" Naoki gives a poetic explanation:
"In the water it's so quiet and I'm so free and happy there. Nobody hassles us in the water, and it's as if we've got all the time in the world...in the water we can really be at one with the pulse of time...
People with autism have no freedom. The reason is that we are a different kind of human, born with primeval senses. We are outside the normal flow of time, we can't express ourselves, and our bodies are hurtling us through life. If only we could go back to that distant watery past - then we'd be able to live as contentedly and as freely as you lot!"
As every chapter is exploring the inside world of an autistic person, I draw parallels with my own son, 11-year-old Sasha who has autsim. He is at his happiest by the sea, and I do believe he feels at home there, he is not scared of the waves, he is enthralled by its vastness.

Sasha worshipping the sea in Cornwall

For many years I have been toying with an idea of taking Sasha to Florida to swim with the dolphins.

I do not believe in miracle cures, and do not imagine my son would suddenly start to speak, having encountered the dolphins. But he loves the sea so much, that I believe swimming with the dolphins would provide him with the unforgettable, one-in-a-lifetime experience. Bonding with a big air-breathing mammal will definitely be an emotional experience. In the past, when we took Sasha to the London Aquarium, he was happy to spend hours watching the fish (while I was yawning with boredom). He seemed to be fascinated by the slow motion and the shapes in the water. This kind of experience is a sensory one for him, he is calm and happy.

BritMums' recent question: "What would you do if you won the lottery (specifically £20,000)?", made me think that if I were lucky to win £20,000, I would book a family trip to Key Largo, Florida and take my guys swimming with the dolphins.
Yes, £20,000 could be probably wiser spent on the house improvements, my kitchen is very dated, and would need at least £10,000 to improve it by getting rid of all the old-fashioned decor and units.

But you cannot put a price on your child's happiness. I would choose to take them to a magical place where they would be free and content.

Eddie in Cornwall

This post is an entry for BritMums #Spend20K Challenge sponsored by The National Lottery, with more ways to win more money on the new Lotto game. Find out more about new Lotto, which starts in October, here – www.national-lottery.co.uk