You can tell the onset of spring in our house. It’s usually marked by a yelp, an expletive and the clatter of a falling wheelie bin.
You see, we have frogs in our garden. Lots of them.
Stealth frogs, specifically. They like to mark their return to our garden by waiting until dark before scuttling out in front of me right when I don’t expect it. Hiding under the bins is a froggie favourite. And given that I usually remember the bins need to go out in the last moments of fleeting daylight, my screams of horror are a little annual tradition (I come from London – if something near a bin scuttles, assume rat. Always assume rat and move at speed.)
The reason we are bombarded by frogs is because every year, they return to the place of their birth ready to….well….erm….get their frog on. Our garden is like the local frog dating service. Only they are currently missing the required candlelit restaurant in which to make their first acquaintance (I know may be overplaying the romance level, but this comparison has a pretty weak grip on cute and whimsical. They are frogs and the love each other. Just go with that and don't think about it too much. They have little frog valentines cards. It's lovely.)
The reasons they are lacking Chez Frog? Well, for the sake of safety, we had to remove the pond.
I know. I know. It’s bad. In our defence, we didn’t have a lot of choice, as it was unsafe, completely stagnant and when the frogs moved out, the mosquito lavae moved in. it’s also only a short hop to a nearby pond. But I still feel hugely responsible for our froggie friends when they pop by. So, rather than tearfully singing ‘Circle of Life’ when the local cats come to visit; I am on a frog defence mission. They’ve got rocks to hide under, plants to scuttle behind and every mow of the lawn now involves a complex frog check procedure. So far ‘operation Kermit’ is going pretty well, with survival rates well exceeding the pond days (I wasn’t brave enough to take on a heron).
But with each scream of abject terror and sigh of relief that it is not a rat, I know that we are now heading into spring. Which means the days will get lighter, me and Little J will actually be able to go for walks at the end of the day (because we have no street lights here….see…and you thought I was being pathetic about the frog thing…imagine things scuttling everywhere in PITCH black. You’re welcome for that nightmare.) And so, we will have not only have a whole load more stuff to do as the days lengthen and outdoor therapeutic activities become an option, but we will have far more capability to do it.
And that’s actually quite motivating. And I need some motivation. If you are someone who reads this blog (and given my recent silence that is likely to be nobody), you will have noticed a bit of a gap since my last post. The reason? Well, I don’t really know to be honest. I think I went into hibernation, frog style. I just simply didn’t have anything left to say. Which in itself, is rather worrying. Because there is plenty to say. There is plenty to talk about. I just slightly lost the will. Lost the interest. And lost my way a bit. I unintentionally engaged less with groups. I was constantly busy, but not really achieving much. I liked to think this was a reflection of some kind of acceptance. I had less battles to fight, less need for support. Actually, it was something far less positive. I had given up.
I had started to give up fighting for support from statutory sources, because we had fought for so long. I had reached the horrible realisation that there are chronic issues within the system that cannot and will not be fixed by parent voices if no one is willing to listen. And for Little J, I had also given up hope of that miracle improvement, that ‘developmental leap’ that everyone talks about. It just wasn’t going to happen for us.
To understand why, I probably have to give you some context. You see, I am a terrible blogger. I like commenting on wider issues, but I rarely reveal personal details and when I do, I hide behind anonymity. I tend to hint, or allude to, rather than just saying what is going on. I neglect to mention key information that frames the entire point of the post. And last year, I neglected to mention a big one.
It started in Christmas 2013. Little J began to have a new type of ‘episode’. His entire body would become still. Sometimes he could move his eyes, other times they would flicker. There was only one thought in our mind – seizures.
And they were escalating by the day. By January last year he was having 20 a day. Then it was 50. Then they would cluster. By April he was often ‘in’ an episode more than he was out. Then he began loosing skills. First he couldn’t bear weight on his legs any more, then his arms were less co-ordinated, then he couldn’t chew properly, then he was struggling to sit. There were serious concerns about his safety and risks of aspiration into his lungs. Discussions were had around long term tube feeding. Ambulance rides became common place. Things looked bad. If you know about genetic conditions and outcomes, then you know that developmental regression is the symptom you don’t want to see.
Only here was the strange part. All of the testing for seizure activity came back negative. Hundreds of these ‘attacks’, which could last for up to an hour, or cluster back to back for hours on end were caught on EEG. It showed nothing. You may be thinking ‘fantastic’. I mean, seizures are bad, so that’s good right? Well, kind of. Because these ‘attacks’ were clearly bad. They were putting him at risk. They were taking away his abilities and they were putting him into high levels of distress. There were some days when our beautiful boy was either in an attack, or sobbing in our arms. Understanding what they were was our hope that they could be treated. You cannot accurately treat a symptom without a name.
We were powerless. Utterly powerless.
And beyond that, we were powerless to take control of our own lives. We were trapped in housing that could not be adapted for wheelchair use, but financially prevented from moving. We were, at the worst point, completely unsupported. At this time, we had Little J in a mainstream nursery with a 1:1 for 10 hours whilst I worked and we had 2 hours a week of support from a carer through social care. You may think (and many professionals would be with you on this), that I would have wanted to instantly pull him out of nursery, give up work and keep him at home. But you would be wrong. Because those hours were his safest hours.
They were safest because there was more than one person there. I cannot physically take care of Little J and get everything he needs, whilst never leaving the room. Yes, there may have been ambulances called to nursery, but at least there was always someone monitoring when it was time to call one and to let me know the minute there was a problem so that I could be there. So what happened next? Well, unsurprising, he was quickly ousted from nursery. The official reason was ‘breaching insurance’, but I don’t think the enthusiasm of the children on regularly seeing the big cars with flashing blue lights was matched by the parents. Then his needs were deemed ‘too high’ for a carer and the carer provided through social care was removed. Social care suggested it may be time for them to step back a little, as his needs were clearly healthcare needs and they re-referred us to healthcare. Only there was a wait for that assessment and at that point, community level healthcare had little to do with us. Our community doctor didn’t see what nursing could actually do. Without knowing what the ‘attacks’ were, there was no rescue medication to administer and he had no tubes or wires in order for them to actively ‘nurse’.
Yep, at our moment of highest need, living in a small village, with me and Little J alone during the day and no one nearby to help; we were left with no statutory services whatsoever.
We were powerless. Again. Repeated requests for a social worker were denied. Emergency requests made by paramedics were ignored. Everyone kept staring at me perplexed as I banged on about housing and employment, not understanding that without those key things in place, no matter where we were headed, we could not provide the basics for our son. We were powerless.
Then finally, support came from an unexpected source following a conversation with a doctor. It was the phrase I was dreading. It’s the opening line you don't want from a Consultant.
‘Do you want to have this conversation over the phone?’
Oh. Right. That’s never good. I answered with the only answer I had.
‘I have no choice.’
Because I didn’t. I could not safely drive my son the 20 minutes to the hospital and there was no public transport option. I could not keep one eye on a major motorway and one on his airways. I could not risk ending up on the hard shoulder with an unresponsive two year old in my arms. I was powerless to even control how I received information.
And it was a conversation that was hard. In fairness to the doctor, it was framed well and fully explained. It was about who could actually viably help us. Who could step in and be a presence with a declining child and no answers. It ended with a referral to the children’s hospice service.
If I said I took it well, I would be lying. Which was fairly stupid on my part. I have been around enough medically complex families to not stereotype the role of hospice support. But the word still holds connotations that are inescapable.
In fact, it was the turning point. With the excellent support of the hospice nurse, we began to feel more confident. And everything else began to fall into place. Our assessment for Continuing Care came around and we finally qualified, meaning support from nurses over school holidays. And most amazingly….Little J started to improve. A shot in the dark medication change paid off. Our neurologist did it, again. With no diagnosis and no clarification on what she was treating (paralysis attacks are the working theory), she managed to halt a potentially catastrophic downturn and get our little boy back. We were once again reminded how incredibly lucky we are. Things may not always run smoothly in the hospital system, but without the NHS and the input of a top professional, I don’t even want to think where we would be. The attacks are not completely gone. He has around ten a day, but they are short lived and do not frighten or distress him. And importantly, the regression is over. He has almost regained all the skills that he lost and in recent weeks has even stunned us with some new ones.
The crisis is over. In fact it was over months ago. So why did I give up. Why go so quiet? Perhaps as a chance to absorb it. Acknowledge the change. Take in the fact that our team of a few is now a team of many.
But also, it was an underlying frustration and a confusion over how to voice it. Because on the one hand, I am so grateful to that team. So pleased they are here. But on the other hand, I am frustrated that it took crisis point to get there. That all the predictions we made right from the start about Little J’s wider health, social and educational needs have come true. We knew from day one he needed a specialist school setting – it took crisis point to get him there. We warned that things could downturn suddenly without a diagnosis and that the way we were being assessed for nursing support was not fit for purpose – it took crisis point to get it. We have been fighting to move house for over two years, recognising that without some childcare, I cannot work at all and we cannot move, trapping us in unadapted housing – it took crisis point to get it. And in fact, crisis point highlighted it even more. You see, agency nurses are not allowed to lift Little J. At a mere 13kg, they have to hoist him and cannot take him upstairs. Only….we don’t have hoists. Because we are unadapted and mobile hoists do not work in the space. For six months we were embroiled in what we lovingly called ‘hoistgate’. I won’t bore you with details, but it’s been utterly ridiculous and a perfect representation of why holistic support from day one matters.
And holistic support does matter. Multi agency support matters. Because it all ties together. Health and social care have to work in tandem. It should be seemless, rather than ping ponging families between the two. And I don’t mean sitting in on a few of each other’s meetings and declaring it ‘collaboration’. Support has to be integrated and it has to be forward looking. Health care professionals need to understand the social care system, because it has a fundamental effect upon the patients that they work with every day. Social care professionals need to recognise that chronic ‘health care needs’ will always constitute some degree of social need. There needs to be an understanding that work, housing and education are not secondary, it is all integral to the life of the patient and their family. Because no matter what the medical condition or how serious the outlook, even at the worst of times; a person is LIVING WITH a chronic condition.
|Its a close call on who's the biggest mystery..|
In our case, things are now looking very positive. Little J is very stable and doctors are talking about the future with more smiles and less concern. Our work and housing situation is finally reaching resolution. We are all set to move to an adaptable property and only now do I realise how much pressure that need to move was placing on us. Very soon, we will be in a position where our lives will be patched back together on all fronts (she says….right as we are about to move both NHS area and local authority…we’ll just brush past that part). And no, we still don’t know what Little Js future holds. And yes, he is profoundly disabled. But, with the right support in place and the ability to help ourselves, we are no longer powerless. Despite all of the medical challenges, our lives are very happy. Genuinely happy. That is why holistic support matters.
So, this spring I am taking some tips from the frogs (coming out of hibernation – not hanging out round wheelie bins). I am emerging from my hibernation as we head into a new phase, a new time, where I hope we can continue to enjoy all of the wonderful things about our funny, loving and amazing little boy; whilst maintaining control over our own lives and our own destiny. I am de-hibernating (word? Yeah, I reckon so). And I’m doing so because sitting quietly and enjoying our own personal outcome isn’t really an option. Because whilst I may have lost faith in how much parent voices are heard, if we all hibernate, positive change will never happen. If we don’t feed back and share our stories, service provision cannot adapt and recognise fundamental gaps. If we don’t tell people, gently, constructively, where we have been let down, budgets will almost certainly continue to be squeezed even tighter in these areas (yeah, there’s nothing people love more than unsolicited feedback. I’m super popular.) We may not be policy makers or political commenters, or even be party to all the information that has led us to where we are. But parent stories have to matter, because they are the only way to fully understand the impact of statutory services. And that has to mean something to somebody. Because whilst I may jump when one frog scuttles, more than one and you'll really see me move.
Because despite the challenges, I still fundamentally believe that together, we are powerful.