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

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They can’t just “get over it”

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My son has Neurofibromatosis type 1: he can’t just ‘get over it’. He has it for life. The implications of it are unknown.
My daughter has autism: she can’t just ‘get over it’. She has it for life. How it will affect her in the future is as yet unknown.
My son is non verbal: he can’t just ‘get over it’. He may be non verbal for the rest of his life. He may not be. We just don’t know.
He also has autism, visual impairment and learning difficulties. You don’t just ‘get over’ any of those either.
My children are both incontinent. Well, guess what, they won’t just ‘get over’ that overnight either!

It is hard to understand. I have hope because I need to have hope. But there is no magical cure. The future is uncertain and I have to live with that.

But one thing I do know is that my children are doing everything they can to make the best of their lives. So when they get upset or struggle or become overwhelmed it isn’t because they have given in, or because they are spoiled or want their own way, or because they want an easy life. It is because they have disabilities; disabilities that may be unseen but are very real. You may look at them and think they are fine. But they are not.

The world is confusing and loud and overwhelming for them. They rely on support networks that others don’t need as much. They see the world in black and white. They take things literally. They overgeneralise. They look at things from a completely different perspective. They have sensory overwhelmed from places that cause others no issues. They have anxiety to a scale many will never be able to imagine. They struggle with simple everyday tasks that we take for granted. Everything is an effort, a big deal, a massive achievement.

My daughter lost her comfort blanket and she was distraught. It was impossible for her to ‘get over it’. She had had the same cloth since she was a new born baby. No other cloth was good enough. Nothing else smelled, felt, looked or could offer her comfort like that cloth. Maybe all children have to grow up at some point. Life has disappointments. Special things get lost. But a child with autism can not ‘get over’ anything just like that. Her whole world turned upside down. Her sense of security and comfort disappeared. Her brain had to process that her cloth was no longer available. The depth of sadness this brought was tangible. It was found again but her faith and security in life remains uneasy. Something of paramount importance to her was lost and now she worries that something like that may one day happen again. That is a huge amount of stress for any 5 year old to carry around all day. She will never just ‘get over’ something like that. Her world changed. And I can never fix that for her.

My daughter is coming home from school in tears. She has a long list of things causing her distress. She isn’t just wanting her own way or demanding she is someone special. She can’t cope with noise or crowds or new unfamiliar routines. She is struggling to keep up with her peers and in the midst of sensory overwhelming in school she is finding listening to a teachers voice a real struggle. This is not made up stories. This is sensory processing difficulties. This is autism.

I took her in the front door of the school this week to avoid the playground. Another parent spoke to me when I came out. In her opinion I am spoiling my daughter. I am babying her. She just needs it get on with it like all the other children do. She just needs to ‘get over it’.

If only….

If only my kids could ‘just get over it’…

They may learn to cope better as they grow. But they will always have nf1, or autism, vision impairment and learning difficulties. The same way others have health conditions, mental health issues, struggle with bereavement or loneliness. Be patient with people. Have compassion. There are very few things in life people ‘just get over’. Most people are trying hard. I know my children are.

“Be completely humble and gentle; be patient, bearing with one another in love” Eph 4:2
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