The Wood For The Trees… The Woody, sorry Wordy, Part


Have you been braced on the edge of your seat? Well, Rufus is extremely clever. And here is for why. I promised you a wordy follow up, some notes loosely jotted down to cobble together to talk about life in the Undiagnosed. Again. No, but seriously, it was there to explain my blogger’s holiday. Why, all of a sudden, I’ve actually been too busy. So Rufus thought he’d only go and make me even busier. During a routine clinic follow up, that actually wasn’t so routine, as it was the one that would show us the shape of his brain otherwise described as MRI results, he decided to take it up a notch. Take his temperature up a few degrees too much. And end the already very long day after three appointments with his first seizure. And another one after that. He pieced together the jigsaw for me. So not…

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In search of respite

I have spent the past week telling people how much I love Small whilst also begging them to help me spend less time with him.

I am a parent of a Disabled Child and I Cannot Cope.

Having reached this point I realise it’s something we really Don’t Discuss.  As parents we should Cope, do you not Love Your Child? Just Dig in, you’ll do it.

I took a leap of faith and tentatively mentioned this online last week, waiting for the shower of no, it will get better and instead was engulfed by sympathy, empathy and good practical advice and I realise this is something many of us think about daily.

We are taught that as parents we should cope – we’ve chosen to have children, get on with it.  But we did not choose to have Small as he is.  When he was born I pictured the 4 of us running through fields, picnicing, having fun.  I never anticipated endless hospital appointments and finding continual childcare for Big so that at least her routine was maintained.

Small is a gorgeous boy.  But I’ve come to realise he has a complex set of both physical and learning disabilities which – before having him – I hadn’t realised it was possible to have and yet still be A Person.  He is nearly 3, unable to walk, crawl, run, speak, eat with anything other than spoon.  He requires endless therapies that cannot be fitted into everyday life.  He has to be carried or pushed everywhere.  He weighs 16kg.  The town I live in has hills.  He hates noise, children crying make him cry and new places unsettle him – visiting family is not as enjoyable as it should be.  And yet in there is a funny, cheeky little Monkey.

But I digress away from the subject of Respite. 

There was a great article by Jo Whiley about the need for respite earlier this year:

Respite defined: a pause or rest from something difficult or unpleasant. 

It’s hard seeing that in black and white, but looking after my son is Difficult and I can no longer do this on my own.  The social worker is called in.   We discuss the many options, all of which are unpalatable but will, in reality, stop this family from breaking down.  We can increase our Direct Payments which now means Small can go to his Direct Payments Provider every other weekend and give us some time with Big to do activities which involve steps/ hills/ eating out.  We can go a stage further and talk about Shared Care.  I knew nothing about this until last week, but is very much what it says on the tin.  You share the care of your child with a foster carer for an agreed number of nights per month.  You still have parental responsibility for your child but they don’t spend all their time with you – this would enable some serious thought about the Way Forward.

Nothing in me wants to give my beautiful Small away, not even for a night, but I know that without it I, and we as a family, stand a high chance of disintegrating under the pressure of his needs, and that benefits noone.  So we go into this with an open mind.


At the beginning

It’s impossible for me to start at the beginning because my wonderful, complicated, enigmatic little boy is 3 in July – a lifetime away from when he was born.  At that time things were so very different to the way we are now – I look back and see a different family.  So – with apologies to those who have seen this before – here’s one I prepared earlier which gives you a little history, a little background and, frankly, the reason why I feel strong enough to put this blog together now…

It’s fair to say that within weeks of Small being born I knew something wasn’t quite right.  I think perhaps if he’d been my first I could have stayed in denial a bit longer but having had Big (his elder sister), and seeing how she had developed, it was quite clear that things weren’t happening as they should.  He wasn’t holding his head up, he was floppy, he was only interested in shadows, not people’s faces.  And so began endless time-consuming, life-altering rounds of appointments, checks, invasive blood tests and MRI’s all to work out what was wrong with our beautiful little boy.  Noone could tell us.

It’s hard to describe the devastation you feel when you realise that the child you imagined and the life you had playing out in your head is so utterly far from the truth.  You fear for your child – will they live? What kind of life will it be? You guiltily fear for yourself – how is this going to change my life?  Will I cope? You fear for your marriage – this isn’t what we’d pictured, are we strong enough to survive this? And you fear for your other children – how will they react?  How will their friends react to their sibling? How are you going to have time for them?  And all this whilst trying to remember to iron school uniform and keep enough milk in the fridge.

We know that children are all different, even within the bounds of the same diagnosis but having no diagnosis…. Never mind no pathway, no track, there’s not even a first direction to start walking in.  Almost every syndrome has a support group(s) available, they have awareness weeks, they have a wealth of readily available information for health professionals and there are established routes for accessing therapy, funding, equipment…. No diagnosis?   Sorry, you’re just not ticking any of my boxes.

Then, one day, a chance conversation at Great Ormond Street – do you happen to know of a support group, we just can’t be the only ones?  They wrote and suggested SWAN (Syndromes Without a Name).  And I was finally able to breathe out.  My boy is not an undiagnosed anomaly – he is a Swan!  And we are one of hundreds, thousands…

I always think of this quote from the end of one of my daughter’s earliest books, ‘Elmer’s friends’.  ‘Elmer’s friends are all different, but they all love Elmer’.  All our Swans are different, but we all love SWAN.  Because unlike the other support groups where they have one common binding medical issue (e.g. epilepsy, autism or tube-feeding) our commonality comes from no commonality – we all have no diagnosis, and so we all fit Swan.

For the first time I was able to see, realise and accept that Small being the way he is is not my fault.  It wasn’t the soft cheese I ate, the stress I felt at work, the fall I had at 35 weeks because I got up too quickly to rescue my daughter from that day’s impending doom, it just Happened.  And until you reach that position – of wondering every day if I Did This – I don’t know if you can imagine the relief you feel when you understand No, it’s not you.  It just Is.  This huge weight is removed from your shoulders.  And I was able to move on with life again. This is Huge.  Without connecting with Swan, this wouldn’t have happened.

It is National Undiagnosed Children’s Awareness Day on Saturday April 13th.  Finally, Small, and all the other Smalls have a day to call their own.