When I was pregnant so many people said to me "get used to no sleep!!" and "get used to doing constant washing". I shrugged these comments off thinking oh please, I can deal with that.
When Amy was born with a severe brain injury people in similar situations said "not to scare you, but get ready to fight for absolutely everything".
To this my reaction was the same as with the getting used to lack of sleep and washing scenario that my friends of typical children had warned me of.
I thought I was different, that whatever was thrown at me I would deal with it. Lack of sleep? No problem. Mummy sleeps when baby sleeps (ha!).
Washing? No issue... chuck it in the machine and off it goes. (ha again!).
Fight for everything? Wow, don't be so dramatic. I got this.. I won't have to fight..
Lessons learned. Fast forward three years and here I am... absolutely swamped with washing.
Gastroparesis, 24 hour tube feeds, frequent nappy explosions, bedding changes, twice daily baths, and now chronic hand eczema have taught me - don't be so naive!
For me, whilst sleep is important and we are generally quite lucky in that area - the levels of chronic stress I sometimes encounter mean that no amount of sleep will energise me.
There is nothing like experiencing something first hand and it entirely changing how you see the world, and all of those things those people said and you had a naive superiority suddenly become so real and you feel sorry, silly, and overwhelmed.
I have an ex colleague, Zowie Kaye. She is a good friend of mine, and also a fantastic blogger for firefly. I remember the day she came into work in floods of tears with an autism diagnosis for her son.
To me this word "autism" carried a sort of stigma with it, it seemed to me like a word banded about to label children who do not behave properly, or maybe yes it was a real thing but not something to dwell on.
I am VERY ashamed now to admit that this was my only insight into the world of autism. How dare I.
Zowie - and all of my fellow autism mums and dads... I am so sorry.
I am now so aware, and am fully on your side - I want the world to see your challenges and show the same levels of respect, admiration, patience and love that I feel for all of you now that I first hand am part of this world.
It is a shame that for me it took this plunge into the world of disability to understand what those around me are going through.
Obviously every family and diagnosis is different, every person presents differently, we can never fully understand the struggles of others but can learn to empathise and become more aware.
My other naive assumption was that cerebral palsy meant you had trouble moving your limbs. We weren't taught even nearly enough in school about disability.
I am yet to exercise any of my skills in Pythagoras theory or simultaneous equations and yet if someone had made me aware of some of the challenges faced by our peers with additional needs then we would perhaps be even more inclusive and understanding.
Amy has taught me that cerebral palsy can mean absolute constant movement... sporadic, sudden, strong, repetitive unstoppable movements.
Trying to press a button on the toy can set the entire body in motion, a feeling of uncontrollable motion resulting in frustration at not quite managing to achieve her objective.
Heightened emotion of any sort can set off her extension pattern and result in her throwing herself backwards, legs stiffening, arms splaying out backwards. This is dystonia.
That's why this month of cerebral palsy awareness, and also down syndrome awareness, and heck.. let's include any genetic disorder, brain injuries, everything... I want everyone to understand that everyone is different. You, me, everyone.
Each person with cerebral palsy is different, some may walk, some may talk, some may do neither.
What matters is that the technology exists to make everyone's voices heard, the technology to maintain good posture and prevent the need for surgical intervention, the medical technology to improve quality of life and improve/alleviate pain symptoms.
We must respect that everyone in life has challenges and that just because you don't personally relate - does not undermine what they are going through.
We must be humble and learn from mistakes and overcome naive assumptions that aren't based on fact or reality.
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