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Routine Reimagined

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I find transitioning from one activity to another tricky. I struggle with planning my time and understanding and the order in which I need to do things. This is particularly hard when I’m tired, so bedtime is often a flash point.

It’s frustrating and I often get impatient with myself – surely something as simple as going to bed should be straightforward and not a source of anguish. But no matter how hard I try, these transitions remain challenging. I need my support workers to step me through the process calmly but firmly. For some this comes naturally, while others find it hard because it involves being assertive and not letting me get distracted.

Because several different people provide my support, it’s also tricky to maintain a consistent routine. To help with this, I made a checklist of what needs to happen each night, but while this was something my support workers could follow, I found it hard to engage with a written list. So, I decided to create something more visual!

A digital drawing by Touretteshero of her visual bedtime routine checklist. At the top of the drawing is black text that reads JT bedtime routine. There are 12 squares each with different coloured backgrounds. Each  of the squares contain a drawing that represents a task that needs completing.  There are drawings of a catheter bag filled with urine with two hands holding the bag. The next drawing is a silhouette of a cat within the question ‘Cat has food & water?’. The next is of windows on a purple background with the words ‘Door Locked, window secured, garden clear of washing etc.’ The next drawing is of a blue water bottle with a green top on a forest green background with the question: ‘Water by bed?’ The next drawing is a red background with a syringe, a bottle of medication and a hot water bottle with the question: ‘Pain medication required?’ The next drawing is of a heating thermometer on an electric blue background with the question ‘Heating off/down?’. The next drawing is of an alarm clock on a lilac background with the question ‘Alarm in PA room?’ The next drawing is of a bamboo toothbrush with toothpaste on the bristles with the question ‘Teeth brushed?’. The next drawing is of an alarm clock set to 08:30 with the question ‘Wake up time agreed?’ The next drawing is a laptop and ipad on charge on a magenta background with the question ‘Computer & iPad charging?’ The next drawing is of a washing machine with the door open and a sink full of water with the question ‘Washing machine & sink empty?’. The last drawing is a stack of folded washing with the question ‘Clothes prepped for the morning?’

This drawing is on the wall in the support workers room and in my bedroom and we’ve been using it for several weeks – it’s made a big difference to how stressful the bedtime transition can be, and it also means that important things are forgotten less often.

In the past I’d have been resistant to using a tool like this, but as I’ve got older, I feel much less self-conscious about organising things in ways that I know work for me. I’m sharing my night-time routine in case it’s useful to others, and to show a different way of managing schedules and transitions. I wish I’d thought of doing this sooner – it would have saved a lot of frustration.


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