I feel like I could write 100 pages on how much I’ve become aware of our senses in the last 11 years since giving birth to our beautiful Lillie and then being a mum to her, Esmé and Jago.
Many years ago I worked for a concert hall in Suffolk and had the privilege of working with many artists. One who has always remained in my mind is Jennie Fontana. Jennie is an author from Suffolk who used to take children and families on a sensory tour of the concert hall, encouraging them to think about what they saw, heard, tasted, touched, not just with their hands but their feet and bodies as well and smelled. But she also got them to think about their 6th sense, a sense that many in today’s world have forgotten about. The sense that you feel inside and yet experience incredibly physically. The sense that alerts you or quietens you. Her ability to engage us all in this sensory experience is something I’ve never witnessed before or since.
This experience has resonated time and time again however since becoming a parent. As a toddler we used to say that Lillie had spider senses. She’d know if someone new had entered her space before a sound had been heard by anyone else. She would know there was an animal in the garden without it being obvious. She would spot someone she knew amongst a crowd of people and shout their name.
This hasn’t changed as she’s got older, in fact if anything, I think she experiences the world in even more high definition than she once did. In the playground (when she was in mainstream) she’d spot her friend when all I could see was a sea of red jumpers. She can smell a piece of fruit from 2 floors up in the house. She can sense a fly before she’s even seen it. She can see a change to a room, no matter how small it might be.
If I change Lillie’s bed, I have to take a picture of it before so I can place everything back ‘just so’. And she totally knows I’ve changed it by the smell but seems ok as long as no one mentions it. If I’m putting her washing away I can’t do it when she’s present because of the change in environment it brings, there are new things in the room that weren’t there before. Every new piece of furniture or colour of wall have a massive impact on whether or not she’ll enter and stay in a room.
You see Lillie experiences the world in extremes and welcomes the things that comfort her. Familiarity and routine is a comfort. Newness and random nature is not. A workshop I attended by an Occupational Therapist began with her asking us to shut our eyes, then she put on a fan, really loud music and came and ran her fingers up the back of our necks without us knowing. Her point? That overwhelming feeling we had is what many of our children face on a day to day basis.
I often think the 6th sense Jennie spoke about is so much more obvious in our Lillie. Her physical reaction to her sensory experience is real and tangible and she attempts to control situations she finds difficult. As Lillie matures we can see her attempting to control this in different ways. Her spinning often gives way to pirouettes and chassé as she learns to dance. But we’ve also seen a huge development since she started at a specialist ASC school because they’re able to regulate her sensory input during the day. Lillie is beginning to notice herself when things aren’t ok, that 6th sense we’ve already spoken about, and look for solutions in a healthy way.
What would you recommend?
Limiting sensory input is definitely something we’ve had to learn and still now can forget. But when we get it right for Lillie, it enables her to develop and show the world her wonderful, quirky, comedy personality. So next time you walk in to a new space why don’t you take 30 seconds to think about your own senses and what it might be for someone who experiences the world in high definition…you never know, you might see, hear, touch, smell or taste something you didn’t know existed.”
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