As we have acquired symptoms, diagnoses, (or a lack of diagnoses), medications and a bucketful of frustration over the years I can understand why there is such a strong 'Special Needs' community on the internet. It is a source of support for many, all the more so because being a full time carer is incredibly isolating. Without the information, experience, social contact and, above all, understanding such a network brings many lives would be infinitely poorer.
Having children with complex health issues is isolating and lonely at times, and certainly in recent years I have felt progressively more divorced from other mums in the school playground as our experience of our children growing up is increasingly different from theirs.
I could write about it regularly, share my inner turmoil at 4am when son number 3 is sat crying in pain on the toilet and how I feel utterly unable to wake up properly and hold his hand - let alone alleviate his discomfort somehow. Or I could share my despair at the haphazard and ill-prepared attempt by son number 2's school made to rewrite an IEP which is 18 months out of date, in preparation for an annual review of his statement before he transitions to high school.
Maybe you would like to hear of the constant tummy pain our daughter endures when her condition is flaring, or the head-bangingly infuriating lack of response from son number 2's Great Ormond Street consultant after four months of chronic bowel impaction and non-existent motility. But I would rather not. I would far rather share something like this:
You see, not only do YOU not wish to hear about all of that - neither do I. I live it, and spend far too much time pondering, wishing, hoping over it all. The last thing I want to do is write about it. Which is why it is utterly beyond me why some people wish to air every tiny detail of their child's medical condition in public over the internet. Yet you would be surprised how many do!
Now before I annoy a lot of people unintentionally, let me be clear - I am not referring to those who blog about Special Needs issues/children as part of a bigger purpose. But there are an increasingly large number of bloggers out there who seem to delight in sharing every last detail of their child's condition, seeking publicity, recognition - or what?
There is a whole SN community out there who are so inwards looking they barely seem to notice the rest of society unless they have a negative comment to make. This I just cannot understand. They seek, either unintentionally or not, to widen the gap between 'normal' and 'different', closing the door on anyone who might not meet their qualifying criteria.
If everyone were to bare their souls publicly you might be surprised at the various challenges we all face. Unfortunately that is life. There is no such thing as 'normal' and we are all 'different', unique and with 'Special Needs' of our own.
Singling any sub-section of your daily experience as the sole focus of your life is not only unhealthy but pretty depressing. Pretending to be part of some 'Special' clique deprives you of enjoying the wonderful multitude of overlapping layers of life.
There are many inclusive layers to life which transcend the barriers of disability or illness. All people seek to feel included but that should be on many levels.
Sadly in today's diverse and spread out society the only contact many of us have with others on a daily basis is over the internet. It's a lonely world for too many people and I honestly believe it is an unhealthy direction we are hurtling in. But for many, like me, the internet is company, information, entertainment and a platform to write.
I love writing - and whilst I am totally sure that as my mother-in-law helpfully pointed out to me "no one is really interested in what you have to say in a Blog", I derive huge satisfaction from every post I publish. Not because I have any delusions about my writing ability, popularity or longevity in print but because it is a diversion, a wry slant on 'my family and other animals' and at times an attempt to challenge others or record my own views on a certain topic. My blog is me, trying to be me in the often crazy world that is my life.
I have learned though that being me often means I don't fit in. I'm not conformist, I'm a black-and-white what-you-see-is-what-you-get kind of girl. I do try bloody hard to please as many people as much of the time as possible but don't suffer fools at all - let alone gladly. I don't blog to be part of a group, to label myself or my family - although maybe it is to define myself on some level. I write about whatever grabs me - and if I can make you smile all the better.
We are all Special, we all have Needs and being normal is far too overrated.
Kate is a sleep deprived mum to four gorgeous children and wife to my long-suffering husband!
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