Thursday, 13 January 2011

A can do person in a won't do system - but not alone

The first 8 words of this blog title were written and saved back in May last year.  Back when frustrations of being at sea in a system that I didn't know how to navigate were rife.  When fears of kidney problems through lack of information were overwhelming.  When thoughts of how to get my boy listened to and considered for a Statement of Special Needs were in my mind all but impossible to achieve.

As I write this now towards the end of the first month of January, I can see that much has changed.  The system in all its frustrations, lack of funding and incomprehensibility remains the same, but I no longer feel alone within it.

I sat at our genetics appointment yesterday lunchtime with the same doctor I've seen twice in the last few years, and felt protected and understood.  Ironically at a time when I really wasn't crying out to be.  Which  took me by surprise.

She looked at the latest letter from my NEW paediatrician (sorry but I am still quite excited about this) listing all my boy's problems and challenges old and new, working her way methodically through them.  Checking where each had got to, furrowed brow and open apologies that it's taken me 4 years to get what we should have had within months of my boy being born.  Expressing a frustration and regret that I've learnt to lock away because it's redundant and stops me being positive.

She opened the appointment saying how she'd been trying to explain to the med student observing all the complications of diagnosis (or lack of) during my pregnancy.  This was huge in itself because all that time ago it was the lab she's affiliated to that missed our diagnosis on the amnio.  Most people would ignore that, or not reveal to me that she still remembered it at least.  But she just took it as part of the history.

She returned to his still unexplained blueness on the list of issues, until she was happy that it hadn't been overlooked.  She again apologised that I've been doing so much alone for so long and I in return told her that of all the doctors I have encountered, she's the sole member of the group who is brilliant at apologising, even when she's not responsible for the things concerned.

She said "we" should be able to get him a statement because he has a chromosomal deletion, but again relaxed when I said I was happy in the hands of our hopeful new inclusion teacher at our hopeful new school.

She explained the new genetics tests to me, said she'd call with results and explained the possible things they'd find and how long it would take.  She looked at my boy and talked to him so kindly and was genuinely delighted at how successful he is so far.

Finally she came to see us in the queue for the blood tests and told me very earnestly that while she doesn't need to see us for 2 years, that I can call her for help or guidance whenever I need.

In short, she raced her way into my team.  A team that now includes an intelligent and excellent Educational Psychologist, a Paediatrician, a GP, and a few other specialists.  All of whom say how well he's doing, say they don't need to see him until I ask, but crucially know that this is just the beginning of the story and trust me to be their guide.

So when September comes and the community paediatrician and the keyworker step back, and possibly the physio and others follow suit, I now know I won't be alone again.

Even though I know I'm typing into a void here, generally unread, I love that I have this blog.  Here I don't seem to go into coping mode like I do the rest of the time, allowing tears to trickle and sighs to be heaved as I process my life as it happens.


  1. I always read - I find your blog incredibly inspirational and balancing. It also helps me remember that with hard work, great achievements can be made. You are exceptional and both your children are ad or able. So, a good start to the New Year - keep us posted!


  2. lovely Marble Rose Fleur, thank you for being so kind. I will keep you posted indeed and ask anyone who's reading this to go and see how clever you are too.
    big hugs, hope you're having a great day