People of my age (let us just say wrong side of 50!) and
above, are notorious for going on about the perils of the internet and the
downfall of society due to social media networking sites. It would appear that most of the people on
the Jeremy Kyle Show are only there due to the fact that they saw something
posted on Facebook.
My Husband tells me that ‘Facebook friends are not real
friends’
Well I am here to state that good things do come out of the
‘virtual world’.
I am no stranger to the Internet as such, I can Google with
the best of them and I used to use the computer as part of my job. I love Microsoft Access and have constructed
simple databases using that programme for use at both home and work. So on my CV I can quite honestly say that I
am computer literate but when it comes to the world beyond that, I have, until
recently been a complete stranger.
I too huffed and puffed when my eldest Daughter told me to
join Facebook. It was only when she
pointed out that she put pictures of my Granddaughters on there rather than
e-mail them to family and friends, that I decided to give it a go. At first I was nervous, there seemed to be
another language to learn for a start (lol).
My Daughter would laugh at my early attempts to ‘update my status’ (do you
see what I did there? I used the lingo!) .
After a time I became more confident and had built up a small network of
people and groups I was interested in.
When Jessica was born the MRI did show that she had an
underdeveloped brain. The medical profession
however, could not give us a diagnosis as to what had caused this or how she
would progress and we felt alone and confused.
Emma (Jess’s Mum) spent many hours searching the Internet to try and
find any scrap of information that might help.
During this search she found out about a group called SWAN (Syndrome
Without A Name) as they had a Facebook page.
She quickly joined. She was
desperate for more information on children who had no diagnosis and to be able
to communicate with other parents in the same situation. I joined the group too. We soon found that we were not alone and
began sharing experiences with others in the same situation. Since then we have
become active participants in the group.
I gave up work over a year ago to help care for Jess and have never
regretted it but I have found that helping with the group whether it be
fundraising ideas or raising awareness has helped keep my brain active and has
kept me in touch with people. I have
got to know and also met some lovely people, which would not have been
possible without the initial Facebook introduction.
Through the SWAN group I was also introduced to the
wonderful world of blogging. Now I had
heard of a blog, but had never read one and never ever thought I would one day
be writing one. Members were writing
blogs to create awareness and also to give hope and support to others who found
themselves in similar circumstances. I loved reading them and began to think I
could perhaps write one myself as I felt that I too had a story to tell.
I have always been a keen writer. Since I was young I have been writing short essays and poems, but
had never shared them with anyone other than perhaps a few family members and
friends. I had no idea where to start
but thanks to the help given to me by other bloggers in the group I now write a
regular blogspot.
SWAN is supporting UNDIAGNOSED DAY which is on April 13th
2013. This is a big day for us, we want
to raise as much awareness as possible not only for our support group but also
to make both the general public and the medical profession aware that just
because a child/adult has no diagnosis this does not mean that there is nothing
wrong or that their needs are not as great.
There are lots of fund raising and awareness events in the
pipeline but one of them is starting on the 21st January and is the
SWAN SINGLE POST BLOG AWARDS.
It does not matter whether you are an already established
blogger or whether you are a blog virgin, check out the details on http://www.undiagnosed.org.uk/the-swans-single-post-blog-awards.
So to those who still think that the Internet community,
blogging etc., are just a waste of time or something for the younger
generation, then I urge you to think again.
If you do nothing else at least read a blog from the all new SWAN
website www.undiagnosed.org.uk. and perhaps nominate a post or vote for someone in the blog awards. I
guarantee you will not be disappointed by the posts, but better still have a go at writing
one yourself. It can be about anything you like, just imagine you are telling
something to a friend. You can get a free blog template and advice by visiting a site such as www.blogger.com or search the internet.
Like me you may discover a whole new world of experiences
await you.

Glad you joined Facebook! I suspect that we’re a similar age. My then teenage kids joined first but it’s started to pall a bit for them now. Maybe it’s uncool now people our age are taking it over!
ReplyDeleteI persuaded my 82-year old mum to learn how to use a computer, then she took the plunge & joined Facebook. She loves it. It makes her feel less isolated as she can keep tabs on her grandchildren! Social networking sites are a fantastic way for families from the special needs world to connect.
I will never forget how isolated & scared I felt during Chrissy’s early years before SWAN & before the internet. Well done for raising awareness of Undiagnosed Day. We’ve come a long way in the last quarter century! xx
Thank you Jane. Loved hearing that your Mum enjoys FB. I know there are sites such as Gransnet but I don't know of any for Grandparents who have grandchildren with different needs. Having once spoken to two other Grandparents briefly at Jess's Nursery it soon became clear that we did share similar problems and concerns and I thought after it would have been nice to have kept in touch. I have been toying with the idea of creating a group on FB where G.Parents of children with different needs can join and share their experiences. Perhaps you could ask your Mum what she thinks. xx
DeleteUpdate: I have just done some more searching and have found a group on FB called Grandparents of children with special needs :-)
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