CARING

National Carers Week has just finished so I apologise for the lateness of this entry but it has been a busy week.    Jess had appointments and also a photo and video shoot for the Sun Newspaper who were doing an article on her with regards to how she enjoys being in the water and learning swimming with Water Babies (her Mum is a Water Babies swimming teacher).  I have included a link to this article for those interested but do not know how long it will be available.

Sun article 

Quite a few blogs have been written already with regards to the caring role of parents with children who have different needs.  My case is slightly different as I am not Jess’s parent but her Grandmother (or Nanny as I prefer to be known) I am registered as her carer as I claim Carers Allowance as Emma works part time and I gave up my full time job to help out, but I am just one of the many ‘carers’ in the family.  Jessica’s Mum & Dad obviously have the main caring role and we are proud of them for the way they cope.  Then there are the other members of the family, these include Ben’s parents, my ex Husband and his partner, my Husband and Emma’s Sister and her Fiancé.  All of us take an active role in helping out not only with Jessica but also her non-SWAN sister who is five.   At Christmas & other special occasions we will all come together as a family, any differences are left behind.  Unusual in this day and age?  Well perhaps it is but I am always thankful that we are able to do this, life really is too short for recriminations and our children always come first.

I love helping to care for Jess and have absolutely no regrets about the decision I made.  Every week brings different challenges and new rewards.

We have been told lots of negative things about Jessica since her having an MRI scan which showed that her brain had not developed as it should have.  We have been told that she may make progress to start with but the gap is always widening as she gets older so she will not catch up, at some point she will just stop learning.  Hearing these things could have had such a negative impact, we may have thought why bother to try and teach her new things if she is going to stop at some point anyway.  Why is there so much negativity from these medical people?  I can understand they do not want to give false hope but then I believe that as long as there is hope there is always something to strive for.  To this end I have decided to keep a video diary of Jessica and the things that she does.  In the early days she would just be on her back staring at the ceiling, now she can crawl, stand whilst holding onto something and a host of other things.  It will be good to be able to look back and see how much she has achieved.

And to get back to the caring topic.  Obviously carers are not just looking after children.  There are many carers out there who look after the elderly and the sick.  In an ideal world we would all be carers, we would care for each other whether related or not, we are all family, we belong to the family of ‘man’.  A pipe dream perhaps, but caring in a broad sense of the word can sometimes just be as simple as something as a smile to make someone feel good and surely we can all manage that.

I have included a short clip of the video I took showing Jessica eating spaghetti for her lunch.  Feeding has always been a problem for her, she has never shown any interest even in taking milk when a baby, hence her being tube fed and now her gastrostomy.  Although she is still only having a small amount of solids at the moment I think you will agree that she is doing very well.  Perhaps in another few months time I can post a video of her eating by herself, we will certainly be aiming for that. 

In the meantime I will keep filming and sharing.   I hope that the video raises a smile and if it does pass it on – (the smile that is)  :-)

WHAT’S IN A NAME?

I have always hated labels when referring to people.  I have often been known to say ‘labels are for tins not people’, but as is usually the case something happens in your life to challenge your views.

I am talking of course about children who do not have a diagnosis. They can have many symptoms but do not know the cause. They do not have a recognised ‘label’.  If you say to someone that a child is undiagnosed it does not really answer the question of what is causing the problems with that child.  It can lead to some people thinking that there can’t be anything really wrong with the child otherwise you would have been given a name for it.  It can even happen that doctors themselves or other people in the medical profession do not really take you or the child seriously when you present them with a list of symptoms but the tests come back negative. 

Filling in forms whether it be for claiming DLA or just holiday insurance can be a minefield – so like it or not, sometimes a label is needed, something that encapsulates all of the various symptoms a child might have and puts them under one category which is recognised.

The meaning of symptom and diagnosis can get confusing so according to Wikipedia (sorry could not lay my hands on my O.E.D.): -

A symptom is a departure from normal function or feeling, which is noticed by a patient, indicating the presence of disease or abnormality
Diagnosis is the identification of the nature and cause of anything

Children and adults may have a long list of symptoms but may never have a diagnosis as to the cause and it is important to keep that in mind.  It could be argued that a recognised term such as SWAN although it sounds nicer, friendlier than undiagnosed basically really means the same thing so why not just use undiagnosed?

What if you were to have all of these symptoms on a regular basis?-

• Exceptional thirst
• Dry mouth
• Frequent urination
• Loss of weight
• Weakness or fatigue
• Blurred vision

Can you imagine having to list off all of those or write them down on a form if there was no recognised collective name for these symptoms and taken separately it could be said that we have all experienced at least one of these symptoms at some point in our lives without any cause for concern.  But say to someone that you have Type 1 Diabetes or put that on your application form and you get instant recognition.

Given that, you can understand why the term ‘undiagnosed’ can sound a little weak.

I believe that the acronym SWAN (syndrome without a name) was originally invented by a member of the medical profession to describe an undiagnosed child. This was then used by the original founder of the SWAN support group (whose grandchild the consultant was referring to) and continues to this day.  Although the group itself is getting more and more recognition thanks to The Genetic Alliance and in particular the hard work done by Lauren Roberts, this is still not a generally recognised name.  

Some people have said that their child’s physiotherapist or consultant etc likes the term SWAN and will use it when referring to their child but to the outside world it generally refers to a bird!

To get back though to the topic under discussion here, I suppose the question I am asking is should SWAN become a globally recognised term and if so would it help?  I believe that some attempts were made once before by the original founder but it was treated then as a bit of a joke by the upper echelon of the medical profession. 

The more I discuss this possibility the more questions come into my mind.

A friend of mine who has a child with a diagnosed disability once told me that it doesn’t matter whether you have a diagnosis or not you still have to fight for everything.  We like to think we live in a balanced and fair society but the truth is we do not.  Shouldn’t we therefore be spending our time, money and resources trying to get all children/adults with different needs accepted by society rather than putting them into categories and inventing names?

On the other hand there are times when a recognised term other than undiagnosed, could clearly have its advantages. 

Like it or not we do feel comforted in some way by ‘labels’.  Just being told that a child is undiagnosed can sound as if what is being said is ‘we don’t know the answer therefore there is nothing more we can do’.  Parents could come out of such a meeting feeling isolated and alone.  On the other hand, if parents are told that their child has no diagnosis but this is a lot more common than people realise and it is known as SWAN then the parents have still been told the same thing but they at least come away with a sense of belonging and knowing that there are others out there.