Imagine having Autism and Sensory Processing Disorder.
Imagine hating having anything touching your skin.
Imagine hating being touched.
Imagine not being able to sleep because it feels different.
Imagine not really understanding the rationale behind the procedure.
….Imagine having to wear a 24 hour ecg monitor.
Wish me luck!!!
Wish my girl luck!
My poor girl.
I hate seeing have so many investigations and her not really understanding why.
She tolerates them….mostly.
She is very good, but sometimes there are things she cannot cope with.
This. She is struggling.
Sensory Processing Disorder is an associated condition with Autism.
It affects people in many different ways.
One way it affects my girl is an intolerance to textures and clothing.
She cannot stand the way certain clothes feel on her body, or tolerate anything with long sleeves.
She is not able to wear, or even touch, woollen garments.
All labels need to be removed and all underwear and socks must have very few seams, or be seamless.
Every thing she wears has to be big and baggy so she doesn’t feel restricted in any way.
You may have noticed from the above, that wearing this monitor is the complete opposite!
She has 6 sticky pads on her front.
1 has a box attached to it. The rest each have a wire.
First problem; my girl had to be touched by the nurse applying the electrodes and monitor. She hated it.
I had already told the nurse to use firm pressure as my girl cannot tolerate light touch.
Second problem; the feel of the pads on her skin. She wants them off. Now!
Third problem; the recorder. A small but heavy box to be clipped to her skin or worn around her neck in a pouch. Neck and pouch, big no no. My girl never wears anything around her neck. Instant panic.
Clipped to the electrode pad it makes her feel like her skin is being pulled off.
Fourth problem; Fear that the wires are coming off. Huge anxiety and checking every 2 seconds that they are attached. She wants them taped on, she wants the tape off….
Fifth problem; She has to record everything she does. Anxiety led obsessive noting of every single movement. Literal thinking….every single thing.
Sixth problem; sleeping. Hahaha! That’s not going to go well!
There are far too many other things, sensory related, to mention….
….the smell of the wires, the feel of the stickers, the sound of the wires clicking together when she moves, the rustling of the tape, the weight of the recorder…….
So far she is coping as well as she can.
She is tolerating it.
Melatonin has meant she has just nodded off but I can almost guarantee that it will not be for long!
It just goes to show how much Autism affects everything in her life.
Some days it stops me in my tracks as I realise how many things I do easily that I take for granted.