UNITED WE STAND- WITH HELP FROM OUR FRIENDS.

Not wanting to be outdone by the London Olympics I have decided to award a few

medals of my own.

A short time ago Jess celebrated her second Birthday.  

 Unlike her older Sister she did not have friends around to play pass the parcel with or just to run around outside in the garden, as at the moment those things are outside of her capabilities.  She did not sit down to enjoy jelly, ice cream and other party food as she is fed through a gastrostomy tube.   Nevertheless she had a family party.  There were balloons provided by Aunty Sarah who has got very good at making dogs and other various things out of the special balloons that you can buy for this purpose.  There was a Birthday banner and of course a Birthday cake.  The nicest thing about the party was the fact that we had all come together to celebrate (as we do for Christmas and other special occasions).   Jess enjoyed every minute, she felt the excitement of her Sister who was also sharing the experience and getting very excited in the process.

TO MY WONDERFUL FAMILY

I am also proud to belong to another very special ‘family’.  None of whom I have ever met in person yet but I feel as if I know a lot of them personally.  This is the SWAN family.  SWAN have an internet support group for families of children who have a Syndrome Without A Name.   This group allows people to share information between other SWAN members, to be able to rant freely about the things that are getting them down in the knowledge that they are communicating with people who have probably had similar experiences and therefore understand what they are going through. 

I was a bit sceptical about joining at first.  My Daughter joined and told me about it and I decided to join up so that I could help her to find information or people in similar positions. 

I once joined another internet group for people with an interest in dogs and training.  At the time I had three and was having a bit of a training problem with two of them. I decided to join to see if anyone could offer advice.  What a big mistake!  .  Anyway I ventured putting my query on line and was totally taken aback by some of the comments received.  They were downright rude and very judgemental.  It was obvious that there was within the group a small clique who would just join forces with each other and gang up on anyone who did not seem to fit their criteria.

I felt very uncomfortable that I should be treated to this ‘cyber bullying’ and promptly left the group (after leaving a few choice words on there first!) and vowed never to join another online group again.

I am so glad that I joined SWAN.  Although opinions may differ at times I have never come across any bad comments etc., and if a comment is taken the wrong way by someone (as can happen with the written word) then the matter is quickly put right and there are no hard feelings.  Everyone tries to help each other.  I have on a few occasions spent an evening worrying about a post where someone’s child has been rushed into hospital or someone is going through a bad time.  I have waited anxiously for a reply to say that everything is now fine again and have felt a surge of relief when it comes.  I know I am not the only one that feels this.  

TO MY SWAN FAMILY

 

Water Babies are a u.k. franchise that specialise in teaching babies to swim from a very early age.   I have to declare a personal interest here as my Daughter is a swimming teacher and assessor for them.  My first Grandchild learnt through them and loves the water and is now a member of a swimming club and can swim a length of the pool unaided.  Her Sister who is the SWAN also goes to Water Babies (I take her and her Mummy is the teacher).  The company have helped Emma raise awareness of children who have no diagnosis and also the benefits of swimming to children with other disabilities.  This has also helped to spread the word about the SWAN Group.

Recently another Swan member appeared on her local radio station to talk about SWAN and the fact that her Daughter swam with Water Babies. Her Water Babies class were raising money for SWAN with a sponsored swim.  The link to her blog is below.  Please take the time to read it and also the radio link within the blog.  You cannot help but hear the enthusiasm in her voice. I HEARD IT ON THE RADIO

TO WATER BABIES

 I am so lucky to have been blessed with a wonderful circle of friends, some I have known for a long time, some I have only just got to know but no matter what the circumstances or the time span I am grateful to each and every one of you for your support when I have needed it most

TO MY DEAR FRIENDS

 And last but by no means least, YOU for reading my blogs.  I hope that you continue to share my journey, your support and comments mean a lot.

TO MY BLOG READERS

 

I would like to finish by sharing a video clip. I am keeping a video diary of the various things that Jess is achieving.  And this from the little girl who they said may never walk …. A TRULY GOLDEN MOMENT…  ps excuse the wobbly camera work, my eyes were a bit watery at the time!

"WHAT MAKES YOU SO SPECIAL?"

If you were taunted with that as a child then my guess is you would feel intimidated.  If you were a child with a disability then you would feel no less intimidated, but depending upon the range of your disabilities you may not be able to just walk away or even be able to think of some remark to throw back.

If you overheard one child say that to another in the street I doubt you would stop and interfere, after all kids say things all the time, it’s a natural part of growing up, toughens them up for later life.

If you overheard a child say that to a child with a disability then even if you did not interfere I am sure you would feel a different reaction for eg. how awful, that child needs to be taught a lesson, I blame it on the parents, society etc.

Yet every single day we use terms to describe people with disabilities like ‘they have special needs’, ‘they go to a special school’, ‘we don’t use the term disabled we prefer to say special’ etc. etc.   Let me try and explain where I am coming from:

Jack and Jill had grown up together, Jack had brown eyes and Jill like most of her friends had blue, it did not seem to make a great deal of difference when they were younger.  Jill started to notice that Jack always seemed to get a lot of fuss made over him because he had brown eyes, he was often referred to as that ‘special little boy with the brown eyes’, people would smile sympathetically at Jack’s parents and say words like ‘It takes special parents to raise a special child’. Jack was sent to a ‘special’ school.  Jill started to resent Jack, she wanted to be thought of as special too.  One day they went up to the top of a hill, everyone thought Jack had fallen, but Jill knew different….

Ok so I am having a bit of fun there, but there is a serious side to this.

You see, I really don’t believe that children are born with discrimination in their genes.  Put a two year old with disabilities with an able bodied two year old and they will play quite happily, make the age gap bigger and they will still play, so what causes this to sometimes change.    Outside influences play a big part and of course the discriminative child grows up to be a discriminate adult and thus the cycle is set. 

Are we unwittingly sending out subliminal messages to society by using these sort of descriptive terms? 

Now I am not saying that young Jack in my story was not special, but what I am saying is that Jill was too.  Jack was a child just as special as Jill but a child who had DIFFERENT NEEDS.  Perhaps if that had been explained to Jill the outcome would have been very different. 

I have two beautiful Grandchildren, one has different needs to the other but they are both very very special.