Why am I writing The Disability Diaries?
As I frequently mention my eldest son, J1, suffers with quadriplegic Cerebral Palsy. I get a lot of questions about this, which is great, I would always wish for his condition to be recognised and understood rather than ignored.
So, I wanted to write a blog dedicated to my eldest son, J1. I toyed with the idea of starting a whole separate blog, but after multiple conversations with people, they all felt I should continue to dedicate my efforts to the two blogs I already pen, and add it in to the one I already have, as a feature page. So I will write one feature per week called 'The Disability Diaries' (The Life of J1). I will post this on my main page but also connect ALL posts in a list to a dedicated page called 'The Disability Diaries' so if you only wish to read those posts you can head straight to that page.
What am I trying to achieve with these feature posts?
I wish to highlight what life is like for someone with severe disabilities and for those that care for them, be it family or friends or carers. Obviously this feature will be written from my perspective, a mother with a child with disabilities. I believe a lot of people do recognise that life is different and can be difficult when you live and care for someone with disabilities but they do not really understand. This will not by any means be a negative posting system, but an honest and true one, which will deal with and highlight the day to day issues, struggles, obstacles faced by J1 and our family but also the amazing achievements and small miracles that occur too.
J1 is 7 but has already been through and achieved so much that I want to record it for him and for others to realise just what he and our family as a whole goes through in living with a disability as severe as his. There are so many disabilities and on such a varying scale that unless you are touched by somebodies life you don't need to make yourself aware to it. I certainly had no idea of how even the littlest and most basic things you do throughout the day could be so difficult and time consuming, and a lot of the time just damn right impossible for someone with J1's disabilities and thus also frustrating for the friends and family trying to care for him and give him a 'normal' life.
How will I write these Feature posts?
I will start these features in a back track manner and try and give ample history to help with the understanding process, starting right from the beginning. As we are now 7 years down the line these will not be as detailed as they could be as I will be drawing on the 'old memory system', and sometimes in order to cope you try and block out certain things. In another way, this may be useful as I won't be quite so emotive about things and it will be easier to write it in a more synopsis manner. I will cover the last 7 years, in as long as it takes, and the main issues we have faced and the amazing things we (well J1 mainly!) has achieved. Then will post on current life.
Hopes and Wishes
As I mentioned earlier, I would love for these features to really raise awareness in general about how tough (but amazing, don't forget the amazing bit) it can be for those with disabilities and for all those people that are involved in their lives. If I fail in that, then I have a whole dedicated section in our 'memory book' for our family to remember what we have all been through and achieved.
LINKS - DISABILITY DIARY POSTS
The Birth and The Beginning of Our Journey (hindsight post)
Diagnosis Day (or Finding Out Accidently) (hindsight post)
The Life You Must Say Goodbye To (hindsight post)
Happy 8th Birthday (current day post)
Dear J1 (current day post)
Sneaky Sneaky (current day post)
The Long Learning Road (hindsight post)
We Just Don't Know (hindsight post)
The Biggest Battle (hindsight post)
Put Yourself In His Shoes (current day post)
Something I Am Thankful For (current day post)
Supporting Young Epilepsy (current day post)
The Day May Be Over (current day post - young epilepsy)
Trying to Live Life (hindsight post)
Dark Days Part 1 (hindsight post)
Dark Days Part 2 (hindsight post)
Dark Days Part 3 (hindsight post)
Dark Days Part 4 (hindsight post)
Latest Achievements (current day post)
The Special Needs Part of My Life (current day post)
Published in SEN Magazine (current day post)
Dreaming of Running (current day post)
The Holiday (current day post)
The Operation Part 1 (hindsight post)
I am Grateful For (current day post)
The Holiday Ahoy Matey (current day post)
Nine (current day post)
A Very Special Needs Christmas Show (current day post)
Doing It Our Way (current day post)
The Efficient PA (current day post)
Admitting Defeat? (current day post)