SILVER SURFING AND BEYOND

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 13^th 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 21^st 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.

LOOKING FORWARD

A  new year has started and to be honest it does not seem that long since I was letting in 2012.     True to form I have not made any resolutions.  I gave up doing that years ago when I realised that I never kept any of them.  Oh yes, I would start off positive, I would stick to that diet, keep up with the exercise (still working on those two!) but as each month unfolded and different challenges came my way a lot of the well meaning plans that I had, simply got lost, as more important things came along for me to concentrate on.  I expect we are all like this really.  It is good to have a goal in life but I believe that you should be prepared to move the goal posts when the need arises.  I have long since abandoned the ‘guilt complex’ and try to focus on the positive rather than the negative.  Life really is too short.  

Keeping up a positive approach can be difficult at times as it can be easy to let slip during periods when everything just seems to be going wrong.  There are times when you can just be ‘dragged down’ by the negative attitude of other people.   Others have written about this before  and have referred to it as having their bubble burst.

I could write about burst bubbles, I could tell you about the times when the tears flow but that is not what I want you to think of when you think of my family and what having a child with different needs is like.  I invite you to look back with me over the past twelve months and celebrate the amazing achievements that have been made.

JANUARY

I AM LEARNING TO HOLD A CUP

PORTAGE PLAY

FEBRUARY

I ENJOY USING MY STANDING FRAME

 MARCH

GASTROSTOMY BUTTON FITTED

I BROKE MY WRIST SO COULD NOT TAKE PHOTOS FOR A WHILE

MAY

I HAVE NOW LEARNT HOW TO OPERATE A 'SWITCH' TOY

LEARNING TO CRAWL

JUNE

TV APPEARANCE WITH MUMMY

LEARNING TO STAND WITH NANNY ANNE

JULY

I CAN NOW DRINK FROM MY CUP

LEARNING TO PUSH UP FOR STANDING

I AM NOW ABLE TO STAND AND PLAY WITH MY SISTER

HOORAY

IT'S MY BIRTHDAY!

AUGUST

PULLING MYSELF UP IS NOW EASY

AND SO IS STANDING I NO LONGER NEED MY FRAME

SEPTEMBER

 WITH MY BIG SISTER AT A SWAN FUN DAY 

GRANDAD ROB MADE ME SOME PARALLEL BARS

OCTOBER

LOOK AT ME NOW GRANDAD

NOVEMBER

WATCH ME WALK AROUND THE FURNITURE

DECEMBER

I STARTED AT MY SEN NURSERY IN SEPTEMBER AND I WAS A MOUSE IN THE NATIVITY

MY BIG SISTER WAS A CAMEL IN HER SCHOOL NATIVITY

I have two wonderful Grandchildren that I love with all my heart.  They are both achievers in their own right and I am so very proud of them.  I recently went to both of their nativity plays and cried during both as I was just so very proud.  Natalie was a camel leading the wise men.  She was so excited at this part as she got to wear a special costume provided by the school and also got to walk among the audience with the wise men in tow.  She took the part very seriously and I had a lump in my throat as I watched her walk around and also the fact that she knew every word in the songs they sang and all the actions.

Sticking to the animal theme, Jess was a mouse in her play.  She also had a costume which had a hood with pink ‘mouse ears’ she looked so cute but true to form refused to keep the hood on.  During the singing all of the staff signed in Makaton and so did some of the children. Jess was definitely trying join in.

Life is not always a bed of roses and bad things do happen but if there is one thing that I have learnt it is  NEVER BELIEVE IN NEVER AND NEVER STOP BELIEVING.

One last photo I wanted to share- both Natalie & Jess had murals for their bedroom wall this Christmas, Natalie's was Disney Princess and Jess's was In the Night Garden, she adores Iggle Piggle.  

LOOK WHOSE IN MY BEDROOM MUMMY!

I hope everyone has a very good and peaceful 2013.