Tuesday, 25 June 2013


I've been thinking about the concept of independence quite a lot recently. With H about to set off to High School in September, learning to walk to school safely by himself and (attempt to) pack his own bag each day it was bound to be playing on my mind. However, I'm actually referring to independence in the context of his younger siblings - because H IS actually gaining independence, and in a terrifying-but-oh-so-liberating way I am watching him grow and mature with a smile on my face day by day. In fact that smile is fairly smug if the truth be told, since we have come within a hair's breadth of total exclusion, Special Needs placement, PRU and respite care more times than I care to remember over the past years. But there he is, eleven and a half - going on 15 in oh so many ways and yet still emotionally so very young. Yes, I'm pretty smug about that.

But the twins are a different "kettle of fish" entirely. A in particular hangs on to me, paws at me, "needs" me in a way his older brothers never did. You might say this is not that surprising given that he has complex health issues - but so does H, and so do an awful lot of other children I know who do not have this strong immature attachment at seven and a half.

I've pondered this at great length, with a large dose of self blame and not a great deal of clarity or insight. But today, whilst baking their "free from" sausage rolls, the penny dropped. Or more precisely, H's cat decided to steal one when my back was turned - and the complete over-reaction this precipitated and the depths of despair I felt caused the "penny" to sink firmly and completely at last.

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!

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