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.

Creating a brighter future one step at a time - #BrightFuture

Does my blog post title sound too ambitious?! Can we really create a brighter future for our children? With most of the environmental research reporting gloom and doom, it feels like we're leaving our children with the most unenviable future. So, do we just give up without even trying?
Yes, we have screwed up with nature big time, but...
I believe that teaching our children to care about nature and encouraging them to make even tiny little steps in the right direction is always better than a passive acceptance.
Perhaps you think that as an individual you cannot do much about saving the environment or changing the future. Don't feel overwhelmed by the enormity of the task and start with small steps. Just a few small changes can make a difference.

Unilever's brightFuture initiative focuses on small changes which help make a big difference.
Small steps are not scary and are very achievable.
Just a few facts:
"Since the launch of the Sustainable Living Plan, Unilever has helped 483 million people to improve their health and hygiene.
This is exemplified in the work undertaken by Domestos that has committed to helping 25 million people gain improved access to a toilet 2020. Access to clean sanitation can protect people from preventable diseases, reduce mortality rates and improve quality of life."
I agree, the clean sanitation is paramount, if anything, it is much more valuable than the questionable vaccinations the West brings to the Third World countries. They need to have access to clean water and sanitation.

Another initiative by Unilever which is worth mentioning is the Dove Self-Esteem Project. This inspiring cause helps girls and women gain body confidence. They've been working on this project for over 10 years. I remember when the first Dove ads appeared, featuring women with normal bodies. It was so refreshing and reassuring.
This campaign is a reality check, especially for young people who are bombarded daily by "perfect bodies" in social media. Young people of all genders would benefit from developing a positive self-image.
Bringing up our children to be confident is very important.
Could we dream of a future where people are not judged on the merit of their appearance, and nobody preys on the other people's insecurities?!
I remember how my own insecurities were riled up by an unkind teacher who used to comment on my "cute hampster's cheeks" every time she saw me. I tried to avoid her as much as possible.
So, kudos to Dove for the self-esteem project.


Which little steps do we take as a family, hoping for the better present and future?
- We recycle religiously, and have been for many years.
What else could count as little things to a more sustainable lifestyle?
- donating to local charity shops. As a blogger, I'm very lucky to be sent quite a lot of toys for reviewing. Some of them we keep, a lot of them is passed on to friends' children, or go to the nurseries and the charity shops.
- washing clothes at lower temperatures and using Persil Non-Bio.
- not using a car. We decided against having a car, and life without a car is do-able, unless you live somewhere in the middle of nowhere. My husband commutes by bus to another town for work. I walk everywhere in town, 10-12 miles every day easily.
- using leftovers creatively:
if I have fat leftover from the roast, I don't throw it away. The duck fat added to roast potatoes turns them into a feast of gods.
If there's beef or pork fat leftover, I let it cool, then add the seeds, roll into balls and pop into the freezer. Birds absolutely love those homemade food bombs. You can buy a big bag of seeds very cheaply. We love watching birds in our garden. There is a curious robin who follows me around the garden, whenever I have some gardening jobs.

We try to encourage bees and butterflies to visit our garden, by planting sweet smelling and wild flowers, and not weeding everything (for example, I keep a little patch of nettles behind the greenhouse - they are a magnet for some butterflies. The same goes for dandelions).

What do you do as a family to create a brighter future?

This post is an entry for BritMums #brightFuture Challenge, sponsored by Unilever.

Disclosure: I received a selection of Unilever products for taking part in the challenge. All opinions are mine.

Birthday boy

Tell me, how could it possibly be that my baby is turning six today?!
You often see threads on parenting forums discussing whether it is sensible to have babies after you're 40, as if once you reach that magic number, you should be more concerned about your pension and possible grandchildren. Such gibberish.
In fact, having our second child when I was 42 was one of the best decisions I have ever taken in my life. I love both of my boys, they are my Universe, my alpha and omega.
Eddie is my second and last baby. He often talks about a baby brother, he loves babies, alas, he'll never be a big brother.
I remember that late evening when he was born very clearly - to the melody of "We can rule the world" (not my choice of a song, the nurses put the music on).
He was bonny and quite heavy, over 10 pounds, with a great mop of dark hair. This picture was taken the next morning, when we were still recovering in the hospital.

When I was one,

I had just begun.

When I was two,

I was nearly new.

When I was three,

I was hardly me.

When I was four,

I was not much more.

When I was five,

I was just alive.

But now I'm six, I'm as clever as clever,

So I think I'll be six now for ever and ever.

I've always loved this poem by A. A. Milne, though Eddie's reasoning is that he's very much looking forward to his 7th birthday party. Yep, we have already started planning the next year's party. 

Happy birthday, my darling boy! Here's to next 100 birthdays! 

Joys and tribulations of parenting in summer

We're still another ten days away from the much needed holidays. Everyone is grumpy first thing in the morning, and I find it hard to feign any enthusiasm about how much fun it will be in school today: "Monday, a PE day, yay! Friday! Fish & chips!" We all count the days until the school is over. I dream of long lie-ins in the mornings, warm (but not hot) sunny days, outings to the park, a trip to Cornwall for a week. all those things that look perfect and rosy in one's mind. In reality, a week into holidays we'll be thinking, Oh no, it's another rainy day, just what do we do today, cooped indoors?
Take our beloved Cornwall. When we think about it afterwards, it's always blue skies and a huge beach at the low tide. When you look at the photos, we had quite a few of dreary rainy days, when we had to wear raincoats on the beach and shiver in the blustery wind. Well, there were even some brave locals who had a BBQ going under the rain.

Last summer in Cornwall

Since it's a British summer, nobody can predict what weather we're going to get. Plans might have to be changed at the last minute. Picnic? Let's have a picnic indoors. BBQ? Perhaps the next weekend will be dry...
Yes, summer is a challenge indeed. On top of all the usual stuff that still needs to be done, you also need to keep your offspring entertained and happy.
And while my guys are happy to spend a lot of time outdoors, they get quickly bored indoors. Board games, puzzles, TV, DVDs all come handy.

Ravensburger Labyrinth is one of our favourite games, it's great for strategic thinking.

Shopping with kids is not for the light-hearted. "Mummy, are we finished yet?", when you have just entered the supermarket and started on your shopping list. I know some super parents turn the shopping trips into a fun educational activity, playing I Spy, revising maths and learning about biodiversity at the same time, but then, I am not a super parent. For me, bribery works the best. "If you let me finish my shopping in peace, you can have a Haribo ice lolly. And later we can pop into a Poundland on the way home."
Poundland. A land of plastic tat and a treasure trove.
We recently got Amazing Spiderman I and II there, imagine that. Everyone was happy.

Baking! That will keep them busy for about an hour. Get out all the sugar sprinkles and decorations, and let them be creative. If you're baking with Anchor butter (and we do, as it's excellent for cakes), don't throw those wrappers away, there are codes to enter at The Good Stuff Hub for fun activities and competitions.

Lemon cookies 

Cafes are our sanctuary and sanity saver. It must be our European roots that make us big fans of coffee houses and cafes. The boys love their cakes and bakes, while the grown-ups indulge in a cup of latte. I keep telling my dear husband that we spend too much in the cafes, and if we didn't go there for a year, imagine how much money we would save. His reply - life is too short, and we need to treat ourselves.

My imp and I in Costa

And of course, don't forget to have a little tea break - Mummy, can I have Maltesers? Can I have a Fruit shoot/a Milky bar? - Yes, darling, as long as I can have my cup of tea and read a book in peace for 5 minutes.

What are your survival tips for summer?

This post is an entry for BritMums Confessions of a Summer Parent Challenge, sponsored by Anchor.

Disclosure: I received two vouchers for Anchor products for signing up.

Incidentally if anyone wants a voucher for a free pack of Anchor Cheddar (available only in ASDA), please give me a shout. It's valid until 7 September, and I'm happy to post it anywhere in the UK.

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

Mixing up the fun: Blenheim Palace and Petits Filous

Life is like a game of chess, you move on the checkerboard from one square to another, recognising patterns  and structures. Light and dark colours alternate. And life is full of contrasts, just like the chessboard.
We recently visited the Blenheim Palace. Not once but twice in two weeks, exploring all the corners and activities of the park. On our second visit I took Eddie to the Palace itself, as I wanted to show him the place where I worked years ago, before he was born. We used to live in Woodstock, and the Blenheim park was literally our backyard.
Eddie loved the palace and wanted to know everything. With his best friend from school and his younger brother, Eddie enjoyed the attractions of the Pleasure garden and had great fun on the train and in the maze. But it was the palace itself that has captured his imagination, and he talked about it for days afterwards.
It so happened that we discovered that Ai Weiwei's exhibition was on. Ai Weiwei is probably the best known modern Chinese artist and dissident in the West. His political views and art concepts have won him plaudits all over the world.
It was an interesting concept to place his very modern art statements around the splendour of the Blenheim Palace. Each piece was displayed amidst the old historical artefacts.
Did it work? You judge. For me the verdict was 50/50.
We loved the grand chandelier in the entrance hall. It sparkled like a fabulous cascade and shimmered in the day light.

Some of the pieces were clever and inspired, like the glorious blue ceramic balls on the lawn of the park, with the palace in the background. It is a beautiful setting, and the reflections of the palace in the ceramic balls looked tasteful and not out of place the park.

Some installations looked fabulously odd and out of place, for example, the crab invasion in one of the State rooms. Apparently there are 2,000 plastic crabs. While Eddie was enthralled with the crabs' army, and the media enthused about it as "one of the most visually striking pieces", I was left completely unconvinced and if anything, slightly quesy.

I'm sure there is some political message but I have missed it. I have full respect of Weiwei's political views but his artwork didn't work in this room. It was just bizarre.

When we were in the dining-room, I told Eddie that I worked as a security person a couple of times in this room and had to watch that people didn't touch anything. You wouldn't believe how many ignorant people rubbed the walls to check if the marble was real or an imitation.
Eddie made me laugh, asking if I had my launch in that room. I just could imagine that.

Weiwei contributed a whole line of golden animal heads for this room. These are Zodiac heads of a Circle of Animals. Apparently these heads have provoked the anger of some Chinese visitors. It is a pure bling, but then it's not out of place in the dining room. There is already a lot of vintage bling there, like that silver piece showing the first Duke on the horse which apparently was placed in the middle of the table so that the wife of the 9th Duke didn't have to look at the face of her husband while having dinner.

Then there's a 5,000-year-old Han Dynasty vase which the art rebel has painted with a Coca-Cola logo. Yes, he made a statement about the American culture, but it's been done before. Defacing the old art has become quite a cliche.

It was all about the juxtaposition of the old and the new, traditional and modern. Library is one of my favourite places in the palace, with the walls of book shelves and the wonderful views of the park. The exhibition curators have placed Weiwei's photo work around the library. Each image was of him giving the finger to a famous landmark. After a while, it was becoming a tad repetitive. Political? yes. Innovative art? Hardly.

It was a day of discoveries. A long day. We were getting tired. Saying good bye to the Palace, park and Weiwei, we headed home.

We did have a bit of a lunch in the palace, but arrived home, feeling quite peckish. Very conveniently, we had some new Petits Filous to try. Eddie has seen the ad of the newly launched Magic Squares and was very eager to try it. Petits Filous is a well-known and much loved kids' yogurt and fromage frais brand.

New Magic Squares combine two tasty flavours - vanilla and raspberry or vanilla and strawberry.
The design is two-tone, just like the checkerboard. Eddie loved the new flavours, and now wants only Magic Squares, which is a bit of a problem, as the only local supermarket which sells the Magic Squares is Sainsbury's and it is quite a long way from us.
With calcium and Vitamin D for stronger bones, these tasty desserts get thumbs up from Mums and kids alike.

That's so yummy!

And that's how we mix the fun and the magic!

This post is an entry for BritMums #MagicSquaresPlaydates Linky Challenge, sponsored by Petits Filous

Disclosure: I received a Tesco gift card to try the new Petits Filous. All opinions are mine.

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!

Happy moments of the day

Eddie

Every week I do a voluntary work at Eddie's school, either taking children to the library to issue new books or do a crafting session, like today, when we played with paints, creating handprint flowers.
As I am in school during the play time, I watch children playing.
There is one little boy, let's call him Jamie (not his real name). He is two years older than Eddie. He is often sitting in the corner of the courtyard, all alone. Sometimes he's hiding his face and sitting all curled up in a ball, as if trying to escape all the noise and commotion around. He rarely plays with the other children (I obviously don't see him every day and can only describe what happens on my "shift"). There are times when I see him crying, being consoled by a teacher.

In some ways he reminds me of my older son Sasha who has autism. He is also suffering often from the noise and sensory overload.
And it's a wild world out there. Screaming, shouting, rough play, pushing and pulling, throwing wooden bricks at each other, they seem to enjoy all of that, while this little boy sits quietly in the corner, arms over his head, trying to block all the scary world.

Today as I was walking around the play area, I saw that my son Eddie has been playing hide and seek with Jamie. Shy Jamie would close his face with his hands and count to ten, then would go looking for Eddie (who actually giggles too much to hide well), then they take turns. Eddie counts, and Jamie is happily hiding.
I couldn't believe my eyes. It was so heart-warming.

Then the inevitable bell announced the end of the break. While kids were getting in line to return to their respective classrooms, I was standing nearby. Jamie came up to me with a cheeky grin.
I couldn't resist hugging him. He giggled and said "Crush me more!" I was happy to oblige. "And more! And more!"
This made my day.
A truly happy moment to see this lovely little boy enjoying his playtime and then letting his playmate's Mum give him a squeeze.

And this is my own ninja turtle. I wonder if he understood that there is a similarity between his older brother and Jamie.