6 February 2017

The Big NHS Takeover - The SEND Parents Handbook.


Hello! and welcome to my regular series, Marvellous Mondays. Here I will be publishing positive stories from other people, including my fellow Bloggers. These posts will be positive posts to remind us all on those hard and tiring days that it CAN be better. To give a little insight into other families and what they've achieved, any milestones they have reached with their children or anything that has made them happy that day. 
 
Marvellous Mondays was born when i had a really, really bad weekend with my daughter. It was a Monday morning and I started to write a new blog post about how i was feeling and what had happened. I found that I was making myself feel even worse and so i stopped and turned it into a positive post. It made me feel so much better writing about the The Many Things I Love About My Child
 
Anyone can join in with Marvellous Mondays, If you have a post that you wish to send me then please Email me at lotsofloveandaffection@outlook.com with a subject title of Marvellous Monday's and include a small description of who you are and a blog link if you have one. 
 
I'm really looking forward to sharing everyone's stories with you, and I hope you like them too.


 Click on the picture link to go straight to Yvonne Newbold's Facebook page The SEND Parents Handbook.


Wow - Just Wow!

One of the most selfless women i have ever met on social media has just been given access to the Twitter Account of the NHS England. Yvonne Newbold who runs The SEND Parents Handbook along with Nikki Brandon and has a massive loyal and supportive social media following,  has written her own books - which you can purchase here - She has won awards, was voted in the top 50 inspirational won am in healthcare in 2004 and is an ambassador for learning disabilities, autism and their families. Above all of that she is a mother and a wife and one of the most inspirational women that i have ever had the pleasure of knowing. 

She will be taking over this massive social media platform for a week, sharing blogs and info from a range of topics including blogs from SEND Bloggers - Why we share what we share, to NHS related posts and showcasing our lives, issues, concerns hoping to change public perception and assumptions, particularly about learning disabilities and autism. 

This Is Yvonne's Story. Thank you so much Yvonne for taking the time to write this for me when you have so much going on and are super busy! 



My three children are now young adults, and between them they have around 25
diagnosed conditions. Toby, my middle child, is the one who has the most to
cope with in life. He has a condition so rare that he may be the only known
person ever to have had it, and in his early life he was so poorly that he
wasn't expected to survive. He and I together spend most of his first six
years living in hospitals, and I lost count of the number of times we were
on the brink of losing him. 


He's 22 now, and due to my own more recent terminal cancer diagnosis, he now
lives in a fabulous care home very close by, and he is doing remarkably well
and he is very happy. He is still a huge and integral part of our family and
we see him several times a week. He remains profoundly disabled but that has
very little effect on his quality of life. He is one of the happiest people
I know with a real skill at being able to milk the most fun out of every
moment. 



He is non-verbal, and he has severe learning disabilities, his cognitive
skills are equivalent to a two year old child. He also has severe autism,
behaviour that can challenge, several physical impairments and some very
complex medical issues too. However, to compensate, he has somehow acquired
some superpowers, and one of them is that he has the ability to bring out
the best in nearly everyone he meets. 



I've been writing almost since I was first shown how to hold a pencil, but
I've only been blogging and writing seriously for the past five years, when
I was first diagnosed with cancer. I started a blog, Coke Floats & Chemo,
and initially I was careful to never write about my children at all. Then
Toby became suddenly very poorly and he was back in hospital and yet again,
we thought we might be losing him. I wrote about it in the blog, and
hundreds of people all over the world wrote back and held him in their
hearts with love until he was better. 



When I found out that the cancer treatment I'd had, had not been successful,
that the cancer had spread and that I probably had about two years left, I
immediately knew what I wanted to do instead of having a bucket list. I
wanted to do whatever I could to make the lives of the next generation of
special needs families significantly better, and to help the statutory
services who support our families to understand better the sort of support
our families needed. 



Firstly, I wrote a book "The Special Parent's Handbook", jam-packed with
everything I'd learnt along the way in terms of making life easier for
special needs families. I was thrilled when it became an Amazon Number One
Best Seller. Although it was written for parents, soon health care
professionals and teachers were reading it too, and before long the
invitations to speak at conferences, seminars and training events started
rolling in. 



I now run Workshops for parents and staff as well as writing and public
speaking, and I'm also now an Advisor to NHS England in Learning Disability
and Autism. Additionally,  I'm the World Health Innovation Summit Ambassador
for Learning Disabilities and Autism and their families. At the very time I
should be winding down, putting my house in order, and dealing with a
terminal cancer diagnosis, life has instead taken on a completely new
direction. Best of all, I'm having ongoing treatment to prolong my life that
seems to be working well, it's now nearly 4 years since I was told I had
about 2 years left. 



I was absolutely delighted when NHS England asked me to curate their own
Twitter Account @NHS . I am so looking forward to the week, it's very
exciting although it's also a huge responsibility and that's a bit daunting.
I want to use the week to the best of my ability to champion the causes of
our community, and also to challenge people's perceptions of others who have
an intellectual or neurological impairment. 



If next week, because of  something I've tweeted, somebody somewhere stops
and thinks in a more positive way about young people like Toby, I will have
done a good job. This is about our whole community, all our families and all
our vulnerable family members.  I so hope I don't let us down.



Thank you so much for reading, Please show your support and join us in the next week, to share, comment, and retweet from @NHS We would all really appreciate it!
Share This Post With a Friend:
Share on Facebook Share on Twitter Share on Pinterest Share on Stumble Upon Share in and Email

No comments:

Post a Comment