Sunday, 31 July 2016
Thursday, 28 April 2016
Tomorrow is the fourth annual Undiagnosed Children's Day, led by SWAN UK (Syndromes Without a Name). Our day to tell the world about our cause. Our lives. Our fabulous children.
But this year I'm going to keep it really simple. Because it's hard to frame the need for a solution when the challenge is so difficult to explain. I could never have really understood the complexities of the landscape that families manage without having lived it. So I have tried to lay it out in one snap shot. The only way I can think of - with a big sheet of paper and a marker pen.
There have been many fabulous visual maps explaining the complexities of living with a disabled child (I'm am neither cleaver nor original here). For example, the brilliant professionals map doing the rounds on Twitter and the fabulous (and artistic) mind map from Orange This Way. But this is ours. This shows the professionals who are involved in, or influence the life of one little undiagnosed four year old. This is our little world. Our map with no map.
And so much of this picture is also our fabulous team. One of the difficulties for families in talking about care coordination is a fear of being interpreted as criticising professionals. In fact, professionals often step in and plug gaps voluntarily, in the absence of clear coordinated services. The challenge is not with specific statutory bodies. It's the need for national, top down coordinated and interacted service provision - even when there is no 'label.'
A lack of integration is undoubtedly a challenge for disabled children across the board. But with no diagnosis or prognosis, the boxes become un-tickable and ambiguity blurs the picture even further.
And the impact this ambiguity? I think it was summed up in one of our needs assessments. Our previous local authority needed to put a name in the box marked 'lead professional' at the top of the form. The person responsible for navigating all of this. So they put the only name they could think of in these ever confusing, undiagnosed circumstances.
That name was mine.
Thursday, 21 April 2016
Sunday, 3 January 2016
I'm totally chilled about this. I can just
unpick the colours right? Right?
In Perfect Baby World, the message is really quite simple. It doesn’t matter if you are doubled in pain and your child isn’t interested, or has a latch like a small irate hoover. If you fail in this basic skill, you have set your child up on the road to life-long failure. As you mix that powdery formula and lovingly tilt that carefully sterilised bottle into your baby’s mouth.…..your child judges you. As they enter into a perpetual cycle of self destruction……they judge you. As they fail in school and hit the Bacardi Breezers hard (cos they are well used to a bottle FYI)….they will know it was all your fault. As they stand in court awaiting sentencing…..they will know. As the judge brings down the hammer and the court takes in a collective breath, they will turn, point the finger of truth and say ‘It. Was. You.’
Complex Child Land is well, a little different. Don’t get me wrong, we all know the benefits of breast feeding and it is still something to strive for. However, it may not be an option. Many complex children find themselves on specially developed and broken down formulas. In some cases, these are delivered via a tube. The quality of these formulas can be determined by how sharp an intake of breath the GP takes when they get the prescription letter (If you find them sobbing in the corner, rocking back and forwards whispering ‘my budgets, my budgets’ – you’ve got the good stuff). These range from the ‘pretty good’ option, which smells like fake tan and hops; to the ‘really good stuff’, which smells like potatoes and wee. Whilst this may not sound appealing, when you have a child in the ‘failure to thrive’ category, constantly being sick, or screaming in gastro pain – it really doesn’t matter if your house smells like the cast of the Only Way is Essex have done a day trip to a brewery and then rolled themselves repeatedly across the walls.
Amazingly, I was able to feed J for around seven months. But it was incredibly difficult and motivated by a fear of formula escalating his problems. He would arch and scream. Establishing feeding was a hellish cycle of sleep deprivation and failed attempts. Then finally, we began trials of specialist formulas, ending up on the most broken down version. For three years, we continued to coax two bottles worth into him by making well rehearsed yummy noises ‘mmm….doesn’t it smell great?’….’yeah, not at all like Mr Potato Head visiting a poorly maintained public bathroom’….. ’mmmmmmm’
In Perfect Baby World, the introduction of food to your baby is a very serious matter indeed. Get it wrong, and you could end up with a fussy eater who’ll only eat baby food when they are a baby. And you do realise it’ll just get worse from there. They may never eat olives. EVER. Just imagine being around your friend’s children at age five as they throw back the hummous and kale leaf salad. And yours will only eat strawberry Petit Filous and Edam cut into the shape of Iggle Piggle. Best to intervene early. Important choices to make between spoon weaning or baby led weaning. Or hedge your bets with the mixed method weaning (though a controversial choice of course).
The reality of feeding is a little different over here. Some children are simply never able to feed orally. And the introduction of food for those who are is often a tense affair with worries about their ability to swallow safely. For those who are able to spoon feed, it’s a slow process. The puree stage can be less of a stage and more of an enduring reality. Simply getting enough food into child can be all consuming and self-feeding can seem a million miles away. Watching online antagonism about weaning methods in baby forums can be an alienating business (when you find yourself muttering ‘weeeiiinnnerrs’ under your breath it’s probably time to log off – not me, obvs. I’m way to mature for that.)
We were lucky enough to be able to begin weaning on time. But not in the conventional sense. Due to the level of gastro pain, everything had to be planned, tracked and monitored, never introducing a new food too soon and recording reactions. Even now, we are struggling to identify triggers. At 4 1/2 years old, food all has to be the right consistency. Self feeding is limited and all meals involve slowly spoon feeding. It can be tiring. It can be repetitive. But it’s also amazing. He is able to eat and we know how blessed we are to be in that position.
This is a mighty simple one. Your child should, and must be walking at, or shortly after the age of 1. If they are not walking by then, you have clearly done something wrong (more than likely the formula feeding and lack of olives). You should probably put them in a baby jumper or something. What do you mean your best friend’s brother who’s a physio said you shouldn’t do that? Don’t be ridiculous, you’re just not trying hard enough. I mean they are 1 for goodness sake.
The reality of the expected walking age is usually made clear by the highly unconcerned shrug of the Paediatrician at age one. However for some children, developmental milestones are not a given. Nor are they here for keeps. Severe illness, or neurological symptoms can cause the dreaded regression that steals away precious abilities and breaks parent’s hearts. When progress does happen, it is often with help. Hours and hours of therapies. Standing frames, walking frames, specialist boots (a word to the men out there. These boots are heavy beasts, so if your child kicks out in a certain direction…move…move very fast). But when it does happen. When all of a sudden, out of nowhere, your child inches forwards. Or grabs hold of a toy. Or pulls themselves into a crawling position. There is truely no comparison to that moment.
At age 4, Little J is unable to walk and is just learning to crawl. We are accepting the reality that his wheelchair and all that comes with it is not here for the short term. It’s here for keeps. But it doesn’t really matter. Honestly, it doesn’t. Because one way or another, I genuinely believe he’ll get there. What ever ‘there’ is for him. What ever works for him. If he walks, amazing. If he doesn’t – so what. We’ll just get the coolest chair in town.
Time to yourself is important. In moderation, of course. Get yourself down the gym. There’s plenty of babysitters and creches out there. Go out for dinner. Get out with friends. It’s important to take time away from your child.
Pa ha ha ha ha ha ha ha ha ha ha ha.
Our reality is really nothing in comparison to what many parents of complex children have to deal with. But, at age 4, we still cannot use a babysitter, or mainstream childcare service. We still have to maintain constant monitoring in case of a sudden neurological attack and we need to be listening for the apnea monitor at night in case of a dangerous pause in breathing. As things currently stand, we also have no regular respite care in place due to moving area five months ago. And in light of the current budget cuts, we know that the support we do receive will likely be very limited. However, we are, undoubtedly fortunate. We have adapted. Our boy comes everywhere with us. We are used to ignoring the stares as he comes out to dinner with us and we clatter his wheelchair into the accompanying table whilst he helpfully ‘clears’ the table of anything in reach. As he gets older, heavier and louder, that may not be feasible. But for now, we can. And we are very lucky. Because he’s a pretty awesome dinner companion.
Sleep is a tricky issue with a baby. No doubt about it. But in Perfect Baby World, let’s be clear on one thing. If your child won’t sleep, it is absolutely YOUR FAULT. You didn’t read the books did you? You didn’t learn the techniques. I think I can guess where you went wrong. You picked them up. It’s true isn’t it? You saw your baby and you picked them up. Idiot.
In complex child land, the approach to sleep may be unconventional, but a little more rational. You see it’s pretty hard for a child to sleep with a monitor attached to them, or an alarm that goes off every few hours, or when they are struggling with symptoms. So we don’t really beat ourselves up about it. We are all, undoubtedly shattered, but I’m yet to hear the ‘ssshh and pat’ technique get discussed on the Children’s Ward. It just is the way it is. So we drink coffee. A lot of coffee. With 25 sugars.
Sleep has been an ongoing enigma in our house. Whilst we are lucky not to have wires or pumps to worry about, for 2 years we managed a child who would scream every night from pain and neurological symptoms. I was once asked by a doctor how I knew my son was in pain as a baby and not just..well, being a baby. I can only assume that doctor has no children. There is a desperation and panic that comes with a cry of pain. Our baby would stare desperately into our eyes for help whilst gasping for breath, then realising there was no help coming, he would collapse in sobs in our arms. It was horrific and there was nothing we could do. Night after night. For over two years. Then finally, the right medication was found and life changed immeasurably. Does it now involve vast quantities of sleep. Erm, no. He’s pretty partial to a 4am party. But I really couldn’t care less. He’s not in pain. And that is beyond ace. Oh, and guess what. It wasn’t our fault. Despite all the times I questioned if it was something we got wrong. It wasn’t. We didn’t need sleep training. We just needed the right doctor.
Thursday, 17 September 2015
|Yes, it's a bear riding a cement mixer. |
No, we don't have a toy bus.
Sunday, 17 May 2015
|Eyes off the foot...just sellotape a leaf on.ok..|
And these stereotypes are having a real impact. A survey from Contact a Family showed that 70% of respondents felt the stigma of claiming disability benefits for their child has increased in the last two years. There is an 'us' and 'them' rhetoric that has stealthily and steadily crept into public consciousness. There are some who would call it an act of masterful misdirection. A PR trick of the highest order. I'm not sure if it is that deliberate. But there is no doubt that the families of disabled children have felt the stinging depth of cuts to public services, particularly local authority services. Yet they are perceived by many as somehow privileged.
So if you're offering…mines an artisan beer (clown trousers optional).
Wednesday, 22 April 2015
This is a hard post to write. A really difficult one. A bite your lip; dig your nails in your palm toughie.
And I don’t mean that emotionally. I mean it really blinkin literally.
So this time around, how can I put it across differently? How can I explain how important this day is? How chronically underrepresented families of undiagnosed children are and why awareness and funding are crucial. I’ve been desperately trying to come up with something (whilst flicking back and forwards to look at funny memes and cartoons on Facebook). And I’m getting nowhere. I’ve considered an insightful drawing, but I have no artistic insight…or talent for that matter. I’ve considered a timely politically relevant pre-election post, but unravelling the party health pledges just made my head hurt. I’ve even considered a haiku (look, I didn’t say they were good ideas). But I’m still stuck.
So I’ve started to think about what ties us all together. The themes that recur. For many, it’s the devastating uncertainty of no prognosis. For others, not being able to accurately treat unfathomable symptoms. In some cases, not knowing if future siblings will be affected cuts deeper than can ever be explained.
But one keeps coming up. It pops up in the statistics, in the blog posts, in the articles. In many ways it’s a direct consequence of the unknown. It affects the parents of the medically complex, fearfully sat beside hospital beds alone. Walking shell shocked down sterile corridors. It impacts the parents of children with unknown developmental conditions; so often misunderstood and unfairly judged as having children who ‘misbehave’. It affects those sat somewhere in the middle, struggling to find a way to explain the inexplicable. It affects all of us who have battled for support, not ticking boxes or fitting into the system that is meant to support us. All who have stuttered over the whats and the whys, even around other parents of disabled children. All who have inexplicably had to take a breath or hold back the tears as we meet a new baby or watch a child overtake our own. Never out of jealousy and never out of sadness, just because every now and then a little gut punch hits and a little voice whispers, ‘you are different now.’
Isolation is a running theme and it affects parent carers immensely, even when a child has a diagnosis. 65% of families with disabled children report feeling isolated frequently or all of the time. (Contact a Family). Without a diagnosis, it can make it even harder for families to feel that they have somewhere to ‘fit’.
But truth be told, it’s hard to be undiagnosed and not become isolated in one way or another. And I’m not afraid to admit that sometimes it’s self-isolation. It’s hard to know how to move forwards when there is no clear route.
Only here’s a problem. I’m sat here writing about isolation and it’s a bit hard to justify. Finding our place in this new world, navigating this complex landscape has so often been easier than it could have been. The isolation has been minimised so many times. And that is because of direct support from SWAN UK and the people we have met. I’m sat here procrastinating by looking at Facebook and l’m looking at a list of people I would never have known otherwise.
Because without SWAN UK, there is so much I would never have done.
...So I guess it’s not that isolating after all.
But it could be so very different. Because SWAN UK has no long term funding. Their main grant comes to an end in April 2016. 1 in 25 children are born with a genetic condition and around 50% are likely to be undiagnosed. SWAN UK provides the only dedicated support in the UK for families with undiagnosed children. Families who often have absolutely nowhere else to turn.
And that support is vital. Bringing thousands of people in the same situation together is important. Having representation for us as a group is important. Whilst I would love to believe that ‘what about the undiagnosed?’ regularly pops up on health and social care agendas; without a recognised and respected organisation advocating for us, I doubt it does or will.
Breaking the isolation is vital. Because whilst not everyone will share opinions or interests, whether you are passionate about green tea and yoga, or partial to white wine and patchwork; when there are enough people there, you will find someone to talk to. And much like patchwork, the thread that binds makes the distinct pieces flow, no matter how different they may be.
Because with the right support, you will find people to talk to. You will find people who understand. You will do things that you would never have done otherwise. And most of all you will find it a little easier to answer that voice when it whispers ‘you are different.’ Because we all are.