I’m not sure where to start because there are so many of you who have the opportunity to deliver personalised care.
Maybe you’re one of the many therapists (Occupational Therapist, Physiotherapist, Speech And Language Therapist to name but a few) who collude and agree when it’s best to meet and then ask that I adhere to ‘your’ agreed date and time.
Please know, I’m grateful for your input, skills and knowledge. I know you are busy doing your best but don’t forget
I have a diary too and am a vital contributor to any discussion about my child.
Don’t forget personalised care is often about the little things
Maybe you’re the secretary (GP, pharmacy, school, artificial feed company) who deals with my call when I’ve run out of my son’s medications, pads, syringes or milk.
Please forgive my forgetfulness, my plate if full to overflowing.
Parenting is a tough job at the best of times. Parenting a child with disabilities takes parenting to a whole new level.
… and yet you can support with,
personalised care which is often about the little things
Maybe you’re the teacher, school transport assistant, learning support worker, SENCO or hearing impairment teacher who witnesses my frustration and tears.
Please understand, I’m determined to get the best for my child, even when I’m not articulate at showing it. It’s important for me to know that you want what’s best for him too. Effective communication between us is vital.
… and so often,
personalised care is about the little things
Maybe you’re the carer who comes into my house in the early hours of the morning or late at night to carry out care I wish I could do alone.
Please realise, I appreciate you being here, you improve our lives but I’d rather it was different and I’d of course rather that I could do this on my own.
… and through listening to each other,
personalised care can be delivered through the little things
Maybe you’re the engineer or company representative who knocks on the front door explaining the paraphernalia my son needs but sometimes I actually would rather not have.
Please appreciate, I’m grateful that you use your innovation and creativity to serve families like mine but sometimes I wish I could just pop to Argos for my son’s birthday present just like everyone else.
… and yet in the fog of complexity and adaptations,
personalised care is curated through the little things
Maybe you are the woman who helps when the splint is broken, machine won’t stop beeping or hoist sling is too small. Or perhaps you’re the man who has asked me to do this one little thing …Please be kind, I’m doing my best, but life just keeps on happening.
… and at every turn,
personalised care is found in the little things
Maybe you’re the Specialist Nurse or Consultant who thinks, ‘One appointment a year isn’t too much to ask.’ Please be assured, I value your contribution, we need it, but it is never just one appointment, it is always one more appointment.
… and yet adjustments and flexibility creates,
personalised care from the little things
Maybe you’re the expert coming to advise about a sleep system, toilet seat or wheelchair. Please never forget, this is my home and you are talking about my family’s private life. Please inspire me to see things the way you do. Work with me to understand a future I cannot see. Help me to work in co-production with you.
Please don’t patronise me or walk out leaving behind my good friend ‘guilt’.
… and don’t forget,
personalised care is often about the little things
Dearest Professionals, you are an army of amazing people who support families like mine. I know you go above and beyond what is expected. I don’t underestimate how much better life is with such a wide variety of inspiring specialists supporting our family. With each new day, I wake and try to stand tall amongst you all, yet I can feel so small.
I can so quickly feel overwhelmed at yet ‘one more thing’ to do.
My life as the parent of a child with disabilities can leave me feeling oh so small.
With each diagnosis, therapy, appointment and piece of equipment, the authority I have in my world shrinks.
I can feel dwarfed with little or no real control because it is you who dictates my daily life and weekly routine.
But dear professionals, I want to say ‘thank you‘.
Thank you for working hard.
Thank you for doing your best.
Thank you for speaking your truth – even when we don’t see eye to eye.
But especially, thank you for;
Taking the time to listen before you speak
Knowing my name and looking me in the eye
Seeing my son and valuing him the way I do
Working in a way which puts power back in my control
Acknowledging the pressure and strain I am under
Showing your value and respect for who I am and all that I do
Demonstrating we are a team, working together for the best for my child and his special needs
Inspiring and empowering me with knowledge and skills
Seeing me and holding me up, especially when the tears fall fast and the day is long.
Dear Professionals, Thank you for the numerous thoughtful ways you do little things
which deliver personalised care to our family
(This blog was originally published on the Born at the Right Time website in July 2018. Images with thanks to Nicola Parry Photography )
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