Sunday, 9 June 2013

Special Needs Blogging?

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 because being a full time Carer is incredibly isolating. Without the information, experience, social contact and above all - understanding such a Network brings many 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at the haphazard and ill-prepared attempt by son number 2's school made to rewrite an IEP which is eighteen months out of date, in preparation for an Annual Review of his Statement before he transitions to High School.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 two's Gt Ormond St. consultant after 4 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 in blow-by-blow graphic accounts. 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. Ironically they unintentionally 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 subsection 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.


And here is an Ode to the Concept of "Special" I wrote years ago

23 comments:

  1. We all blog for different reasons, I tend to not go into to much detail about my family life, but I know for some, their blog is a way of getting things off their chest. Writing can be incredibly cathartic. I know at times I have written posts that I would never share, they are too personal, but the act of writing it down helps. I think in blogging, as in life, it is a case of each to their own. I am like you- I don't have a niche, nor am I part of the cool gang, I blog whatever I feel like, whenever I feel like it- but I know others who have schedules and plans and themes - it is up to us all to decide what we do and don't want to share online, and how we choose to approach it, then readers may or may not come, depending on what whether you write is their cup of tea!

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  2. I have a special needs child, I blog IN detail about our life. I don't do it to get a reaction, I do it because it is bloody hard work being a Mum, especially to a child with additional needs and I see it as a type of therapy. It genuinely really helps me. If people aren't interested, I am not forcing them to read.

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    1. I have four with additional needs, three of them pretty considerable and yes, it is bloody hard work (especially if you have health issues yourself) and I do see your (very valid) point about it being therapeutic too. I wrote this in response to an overwhelming number of SN Blogs I was coming across, with associated Facebook Pages asking for "Likes" which seemed odd. Several people I had met within the "Special Needs" community were starting Blogs which almost seemed to boast about their child's disability too which I found quite unpleasant. I wasn't really referring to those which are raising awareness, or clearly writing for a cathartic purpose of their own. x

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  3. I agree with Sonya, its entirely up to you what you blog about. We all have our own little virtual space and writing all your thoughts good or bad can be so therapeutic. As a complete insomniac I know that some of my best posts come in the middle of the night when my brain wont switch off and I just have to get it all down. I don't have a particular niche and my kids have got to that age where they don't really want me to share their stories so now I have to find other things to write about. Good luck in all your post xxx

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    1. From a fellow insomniac I TOTALLY relate to that! I often give up trying to sleep and get up to write - my mind won't rest until I have "downloaded" whatever I'm thinking about!!

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  4. Im with Sonia. I have quite a specific blog so it is quite impersonal, but i see blogging as a kind of diary almost, where you can write about anything. I can hand on heart say i love blogs where the blogger has really shared themselves with their readers, especially if they are blogging about something tgat doesnt affect me personally, as I feel I learn from it. I think its all down to personal opinion, both of the blogger who writes it and their readers! X

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  6. I think all reasons for blogging are valid, each to their own. I guess if people don't like it then they don't have to read. Maybe the detail gives others in a similar position comfort or information? But totally up to you to share or not to share x

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    1. Yes they are. And there is detail and detail... I guess I don't believe in allowing our additional difficulties to take over or be the main focus of life, even when it sometimes IS IYSWIM? It can become very inwards looking too. There is definitely a particular genre I am referring to ;) not the more mainstream Blogs I usually come across. Photos of surgeries, procedures, crying children.

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  7. For me it's a case of each to their own. Some bloggers don't like to use photos of their children for example, we all set our own boundaries on our blogs and they vary wildly.
    I've seen the SN blogging community to be very supportive of each other but I don't regularly read SN blogs because it's not something I can relate to - and I never know what to comment as a result - I worry I'll ask a really stupid question and look ignorant most of the time!

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  8. I don't think there really is anything 'normal'. The more people I meet, the more place I visit, we all have common threads in our lives but we are all different and I think that is a great thing. Everyone is special and there is an audience out there for every blog.

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  9. I want to tell you "good for you" and i want to tell you that you are great!
    I follow your blog and your fab face book posts on the nutrition group and i really like you!
    Love Model Mummy x

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  10. I think that what's important is that you are happy with what you blog. Got to say I love the pics in thos post x

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  11. I fully agree you blog what you want to blog about. We all blog about different things for different reasons.

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  12. I don't feel comfortable sharing much personal stuff online but as I blog about baking and crafts I don't really need to. The blogging world is full of diverse people so I understand that every one approaches it differently and that's their choice.

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  13. I also have a child with several diagnoses, and while I've chosen not to make that the central focus of my blog, I do see the benefit in more specific Special Needs niche blogs as a useful resource and as a support for other families. If people really do write details of their child's care in such specific detail, this could be an issue for me in terms of privacy for that child but I can't say I have really come across that? There are some brilliant Special Needs blogs out there, and even though my blog doesn't keep it as its main focus - as a blogger with a child with special needs, I would consider myself part of that community, and proud to be part of it :) The good thing about blogging is that we can share as much or little as we need at certain times, and change this balance whenever we see fit too. I will have a couple more SN posts coming up in April for awareness of 2 of my sons main diagnoses

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    1. I think you are right Anna. I enjoyed writing this piece and have also learned a great deal from the process and the comments. Very worthwhile :)

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  14. Here's to not conforming or being 'normal' (whatever that is)!
    Love the photos - they made me grin :D

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  15. I think Sonya is right we all blog of four our reasons.
    I got sad when I blogged something serious and no one noticed but then again it eased my soul just writing it

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  16. I blog for me and if people read what I write then that's an added bonus x x

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  17. Aww I cannot imagine how it must feel to have a child that isn't 100% healthy, I guess we are very lucky. I have four children so have had enough of my share of sleepless nights and temporarily sick children but to have it ongoing must be very tough. To be honest I haven't come across many blogs like you mention but I agree no one wants all doom and gloom, after all our children, no matter how difficult, have their positives and that needs to be rejoiced too :)

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  18. I think people blog for a mixture of reasons but I often find its quite theraputic to write through things! x

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  19. I think for some sharing every last details might be helpful... and if this is the case so let it be... blog away... and feel good!

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Many thanks for taking the time to comment, I really value your responses.

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