Monthly Archives: November 2016

What if you can’t be Santa to your children?

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I wandered into the shop happily but walked out with silent tears.The music played ‘Santa Claus is coming to town’ and it was just too much. What do you do if Santa Claus can’t come to your town? What if you DON’T want it to be Christmas every day?

What if you can’t be ‘Santa’ to your children?

I am not sure at what age it dawned on me that all those years of having gifts from ‘Santa’ were in actual fact from my parents, but once you know things change. For some it becomes anger that they were lied to, for others disappointment that life is not quite as fairy tale as they would like it to be, and for some it brings a greater respect for their parents as they realise how much they sacrificed to make them happy growing up.

Then you become a parent yourself and this whole ‘Santa’ thing becomes something altogether different. I must admit I have never made a huge thing of it to my own two children but somehow it just seemed the ‘done’ thing that even on their first Christmas (when they were in actual fact just seven weeks old!) they had something from that man in red.

And so it continued year after year with little thought or reflection. No-one wants to have the only kid who got nothing from ‘Santa’. Friends, family and even strangers spent the last week of the year asking children ‘what did you get from Santa?’ Parents smile smugly as children rhyme off expensive gifts and the entire contents of Christmas stockings to anyone who will listen.

I want my children to be able to do that. I want my children to be happy. But this year I can’t be Santa to them.

Now before you get all upset and feel sorry for my children this is not what this post is about at all. My children are blessed. They are happy, warm, loved and have an abundance of toys and games. They haven’t asked for anything hugely expensive this year nor have they demanded something that is out of stock the world over.

In actual fact they haven’t asked for anything because one is non verbal, they both have autism, and one has significant learning difficulties and developmental delay.

What if you can’t be ‘Santa’ to your children because they have no list yet again this year, they have no desire for toys or games and no idea what Christmas is about?

They would be happy watching glittering lights sparkle sitting on your knee or looking at a book together. They gain value more from the touch of your hand in theirs than a pile of neatly wrapped presents from a stranger who apparently came down the chimney during that night.

I can’t be Santa to my children because they have no concept of him. Sometimes that brings silent tears to my eyes when the world is full of parents rushing about checking off lists and hoping and checking for new stock online so as not to disappoint their child.

My silent tears are not for me though. They are in fact for those very parents, who like so many before them, are desperate to be the best Santa their child could dream of.

I am so incredibly blessed. I am so infinitely content. I can’t be Santa to my children but I get to be mum to them instead. I get to read the real Christmas story to them while they happily gaze at those twinkling lights; I get to sing carols to them while they smile up at me; I get to hear their laughter and joy all the time thankful for their health and happiness for another year. Those are things Santa could never bring.

Parents, enjoy being Santa to your children this year but never forget that your gift of time with your children and your love are things that may not be on your child’s Christmas list this year but those are the things they will remember much longer than any toys or electronics.

We can’t always be Santa and give our children everything in life they desire but that is OK. Opening up the latest ‘must have’ toy may bring immediate smiles but lasting joy and contentment comes from parents who provide all year round not just on 25th December.

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Sometimes it all gets a bit too much

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I took this photo of my daughter recently in a busy shopping centre. It had all just got a bit much for her.

The noise of so many voices. The smell of so many different foods combined with the smell of people and everything the shops were selling. The brightness of the lights. The sense of dizziness as we walked in and out of different shops that were different temperatures, had different flooring and so many colours all around her. The constant thud of feet walking on the tiled floors. The bombardment of music and announcements. The lack of personal space in busy lifts and shops.

She could not wait to find a seat. She could not go on any further. So right where she was she sat down silently.

I left her sit alone at first. But after a while I sat right beside her. At first she was silent unable to even voice how hard it all was for her. Eventually she just said it was all a bit too much.

I may not have autism but I can so relate to that feeling too.

When she was ready we both got up and headed home.

I didn’t have to take a photo of her that day but I did it for two reasons:

Firstly I want to remember what happened so that I can try and help her before it gets to this stage again. As the shops get busier leading up to Christmas and the music, smells, and lights all get even greater I want to be able to keep a close eye on my daughter before it all gets a bit too much for her. It is my responsibility to pick up on her cues and notice the signs that things are stressing her. Perhaps I can learn from this powerful image and prevent her being so overwhelmed before we reach that point of freezing again.

Secondly I took the picture that day because seeing her on that floor while the whole world carried on made me realise something so important: sometimes we forgot that in the busyness of our lives others are struggling right in front of us. While I kept a close eye on my daughter that day my eyes were suddenly opened to the elderly man who was sitting alone having a coffee and the young mum struggling out of the nearby lift with two small children. From the look on their faces and their body language they both looked like it was all a bit much for them that day too. I vowed then and there never to be too busy to not notice when others are struggling right in front of me.

Once home I showed my daughter the photograph I had taken and asked if I could use it on this blog. ‘Yes’, she said ‘but tell people I am ok now. It was all a bit much but it gets better.’

My daughter realised she had sensory overload. Things had built up so much that morning that she needed time out. It happens to everyone sometimes.

Take time to sit alone in life. It is nothing to be ashamed of. A little time out is something we all need now and again. Perhaps someone will even sit beside you and support you though it too. I really hope so. No-one should be alone when it all gets a bit too much in life.

This post first appeared on Firefly

Why being ‘autism friendly’ is much more than a gimmick

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Did you know that last week Britain’s second busiest airport (London Gatwick) became the first airport to be ‘autism friendly’?
Where you aware that last weekend the international toy retailer toys r us held an autism friendly event throughout the uk?

It seems the whole concept of being autism friendly has taken wings and grown and it is now common place to hear of autism friendly cinema screenings, autism friendly museums and libraries, autism friendly times in trampoline parks and soft plays, and even autism friendly Santa’s grottos!

A quick glance online and I even found autism friendly cruises!

But what is this autism friendly stuff all about and is it just a marketing gimmick?

According to Wikipedia Autism friendly means “being aware of social engagement and environmental factors affecting people on the autism spectrum , with modifications to communication methods and physical space to better suit individual’s unique and special needs.”

In practice for most places this means what the retailer Asda advertised recently as a ‘quiet hour’ where all unnecessary noice is reduced to avoid too much sensory stimuli. Autism friendly cinema showings for example have dimmed lights rather than complete darkness and a more relaxed atmosphere.

However there is much more to this than just turning the tannoy down! The National Autistic Society now has an award for being autism friendly but to get this prestigious award retailers and towns or businesses must do much more than just reducing noise or creating a more relaxed atmosphere. Criteria for their award includes having autism friendly customer information, having staff and volunteers who have an understanding of autism, making the physical environment more autism friendly, having the customer experience autism friendly and promoting understanding of autism. For anyone to go to that level is far more than just a marketing gimmick; it is costly, time consuming and takes a lot of motivation.

So why do it? And why single out autism?

What if I told you there are around 700,000 people in the UK living with autism – that’s more than 1 in 100? If you include their families, autism touches the lives of 2.8 million people every day. 79% of autistic people and 70% of families said they felt socially isolated.50% of autistic people and families sometimes don’t go out because of concern about people’s reaction to their autism. Autism friendly events have a potential to attract a huge market for businesses and towns as well as showing tolerance and understanding that reaches many more besides.

What about other disabilities?

This is the beauty of autism friendly. Autism is a huge spectrum involving difficulties to varying degrees with communication, social interaction and social imagination. Some will have learning difficulties or mental health struggles. Autism friendly events are there for everyone regardless of diagnosis or difficulty. They are as accessible to the Down syndrome community or those with genetic disorders. They are accessible to those with physical difficulties or challenging behaviour. No-one will be asked for diagnosis or membership to access any autism friendly event of any kind and therefore what is helpful for those with autism is as open and accepting for anyone facing any difficulty. We are all in this together.

img_4175So why do I care? I recently took my severely  autistic son with me shopping. He made noises, flapped his hands, laughed loudly and generally had a wonderful time watching a lift door open and close again. He can not speak. He has the mental understanding of a baby despite being 8. He is still in nappies. As the lift door opened a stranger looked at my son in disgust and said “I have come here to do my shopping, not see the likes of THAT!” I cried. It took me a long time to feel I could ever take him out again. I am not alone.

When Victoria Holdsworth approached toys r us in 2014 to ask if they would consider doing an autism event to help her son Joe she had no idea how much the entire autism friendly concept would take off. We owe her so much.

Now there are entire towns looking to become autism friendly. Liverpool has a huge campaign and councillor Mandy Garford from Dartford has a determination to make Dartford autism friendly too.

This is much more than a gimmick. This is an entire movement expanding across the UK that says to autism parents like me ‘we see you and we care.’

Do you care too? Please help by sharing this blog, supporting autism awareness and thinking about how YOUR town, business or place of work could also be autism friendly too.

Maybe one day less people will then call my son a ‘that’.

Being autism friendly is much more than a gimmick..it is a monumental change that makes the world much more accepting to children like mine.

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Why I am proud my daughter won’t be in this year’s Christmas play

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Maybe I am getting old but it does seem talk of Christmas seems to start earlier every year! We are only just over Halloween and already the shops have festive music, selection boxes and wrapping paper in prominent places!

 
As a trained teacher though there is one place I totally understand preparing early for Christmas and that is schools.There is a presumption that schools and churches will put on an annual nativity play or concert of some sort and the organisation involved in these is tremendous. It takes months of preparation to teach children songs, practice words and prepare costumes. For many children and parents it is the highlight of their year.

 
This year my just turned 8 year old daughter has asked not to be in the Christmas play. 
At first I was bitterly disappointed as Christmas is one of my favourite times of year and both my church and her school put on wonderful shows. But when she told me why she didn’t want to be included I actually cried.

 
“I don’t enjoy it at all“, was what she told me.

 
It is my duty as a parent to listen to my children and support them. She has a right to choose. My daughter has selective mutism, anxiety and autism. Being on a stage in front of others, remembering stage directions, song words and wearing itchy costumes is something she finds so stressful. She finds the change of routine difficult and the nose frightening. The thought that everyone is looking at her makes her feel physically sick.

 
I realised I wanted her to be part of it all for all the wrong reasons. I wanted it for me, not for her. I didn’t want her feeling excluded or feeling like she was missing out. In actual fact I was putting her in a situation that made her so uncomfortable and stressed.

 
This year I will watch the church play and her school play and no doubt I will still cry at ‘away in a manger’and beam with pride at little children remembering lines. Instead of watching my little girl perform I will have the beauty of holding her hand as she sits next to me and cheers for her friends. She will sing the songs happily and for the first time I will manage to hear every word as her beautiful voice is right next to my ears. We will laugh together at the fun parts and share the experience in a way she finds relaxing and enjoyable. It will be magical but in a very different way than I imagined. 

 
It took courage for her to be able to tell me something she knew I would find difficult to hear. She knows how much I love watching her do things and she knows how proud I am of her. This year she knows I am extra proud though at the fact she felt she could tell me she doesn’t enjoy being part of the Christmas play.

 
I will never forget her smile and the sparkle in her eyes the night I told her how proud I am of her for not being in the Christmas play this year.

 
It is ok to be different. It is ok to say no sometimes too.