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.

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.

The fragmented world of Sasha

When you are non verbal, some people automatically presume you're not clever enough. Perhaps understandable if you have no knowledge of children with special needs. Hardly pardonable in case of the specialists who work with children who have special needs, they should really know better.

It always irks me when we have meetings with the specialists, who insist on bringing Sasha along, while we discuss his condition and challenging behaviour. How would it make you feel, if you had to llisten how the other people discussed you and you were unable to defend yourself or explain why you did what you did. Frustrated? Angry? Upset?

They talk over Sasha's head, as if he doesn't understand anything. I know my child, he does understand, but will they believe that he is intelligent?

Sasha who was a chatty social little boy lost all his speech, when the autism started to take over. He cannot say a word now except a long litany of mum-mum-mum.

I can guess what he wants, I know his likes and dislikes, but I would have paid millions to find out what he thinks, what worries him, what it is to be him.

Self-portrait

When we bought an ipad last year, I showed Sasha how to take photos with the ipad camera. Showed and forgot all about it, then one day I had a look at the photo folders and was amazed to find out that Sasha has been busy taking hundreds of photos.
They are mostly of the everyday objects, as if he is taking comfort in the familiar world of the solid objects. Here is the table, the bed, the ceiling with the old beams, the bookshelf, the old rug.

Our old dining table

There are also images of his family. And self-portraits.

I was in awe, when I saw these images, they allowed me to have a glimpse of my son's inner world. He clearly sees the world as de-fragmented. It is not the whole table, it is the corner of the table, with a rim of the glass. He seems obsessed with the same image, and takes photos from the same angle, producing dozens and dozens of the similar images. It is as if he reassures himself in their familiarity or recognizability.

Sasha doesn't seem to be interested in nature, you won't find the photos of the garden, for example. Perhaps, in his opinion, you cannot "rely" on the nature, it is always changing, always different, never the same, which could be scary.

Self-portraits are often fragmented as well, he sees himself not as a whole. He could take lots of photos of his own foot or his arm, or his own face, abruptly cut by the frame and in technicolour.

For some reason the photo above reminded me of the self-portrait by young Parmigianino where he looks at himself in the convex mirror, with his hand enlarged and distorted by the glass. I am not trying to imply that my son has the same artistic genius as Parmigianino, just making a comparison.

Interesting that he sees his younger brother in the same way. There are many photos of Eddie, but again the portraits are just fragments, as if he studies his sibling's face, here is his cheek, the top of his head, a chubby hand. Except perhaps this one, where you can see Eddie looking at the book.

I even discovered a photo of myself, looking quite tired. I was completely unaware that this photo was taken. What I found interesting, that my image wasn't defragmented.. Does it mean he sees me as a whole being? Do I read too much into it? Do I misinterpret his photos?

For me this glimpse into my son's inner universe was a journey of discovery. I was touched and happy at the same time.

Sasha often watches his DVDs or videos on his ipad by covering half of the screen with a thin book, so the screen is partially covered. At times he leaves only a corner, like saying "I don't want to let this whole world inside me, I believe in the importance of the details that our world is built of".

Calendars on the wall

The old beams

That also shows he can appreciate the beauty of the simple objects.


I thank you, Sasha, for letting me inside your silent world of beauty, order and chaos.

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