Sunday, 2 August 2020

COVID-19; a reality check.

The weekend before lockdown, we were all isolating at home, suffocated with the panic our media were propagating and utterly paralysed by fear that one or more of us would be dead by the end of the week.

Photo by Tonik on Unsplash
My birthday (also Mother's Day) was a day to remember, for all the wrong reasons. Our youngest son had been unwell with a bad cold, slight temperature and really stingy, painful eyes. Nothing major - like a mild flu. He has reduced immunity so it was all very normal and the sneezing was not a feature of COVID-19. Then his 18 year old brother got sick - and this was different. A temperature of 41C which wouldn't budge on paracetamol, mild cough and shortness of breath. By day 3 - Mother's Day - he was coughing up blood spatters and with his eccentric droll sense of humour he was drafting his final words.

Except it wasn't funny at all.

We had to call 111 that night, it took FOUR HOURS to get an initial response, which turned out to be from an advisory team only. We'd picked the wrong option on the initial call. (This was infuriating, since we picked the "concerned about COVID" option, which we very clearly were!!) Another THREE hours later we got a call. Yes it sounded like COVID, despite the fact that with ASD, ADHD, OCD and anxiety he never left the house. (Even more odd the only other person in the family who was ill was his younger brother - yet we've all heard that children can't pass this on to adults.) They offered no advice, except to call back if we were concerned and they would call an ambulance. By this point we had figured you either needed an ambulance or you didn't, and we would be calling 999 not 111 if we did, since no one could wait that many hours for emergency care!

I didn't sleep for three nights, I barely ate. I have honestly never been so terrified, utterly convinced I was going to lose a child. Three days later he asked for pizza, and we knew he was over the worst!

In retrospect, our panic was not in line with the level of threat before our eyes. Our anxiety fed that of our son's and he also believed he could die. And as the country waited with bated breath our government seemed unable to plan for the epidemic coming our way and we gradually lost all perspective. We lost our comprehension of relative risk, convinced we are all going to die without extreme measures and government control.

I'm not scared now. But I am very, VERY angry, and I think you should be too.

Sunday, 7 June 2020

History is irrelevant without context.

My children are fed up with one of my favourite historiographical quotes, so apologies if you've heard this one before....
"A fact is like a sack. it won't stand up until you put something inside it." Pirandello.
Perspective is so fundamental to history, I would go even further.
Facts are irrelevant without context.

Today the Bristol Black Lives Matter protest saw a minority tear down the statue of Edward Colston, (a racist and a murderer by today's standards) and drag it to the river.

But Colston was a Bristol-born English merchant, philanthropist, slave trader, and Member of Parliament. He supported and endowed schools, almshouses, hospitals and churches in Bristol, London and elsewhere. His name is commemorated in several Bristol landmarks, streets, three schools and the Colston bun.

He was also a slave trader who made his fortune from the trade of human beings as commodities, and on reaching St Peter at the pearly gates, I've no doubt his deeds would have been considered carefully. In context.

Tuesday, 2 June 2020

Autism - a perspective

Someone on Twitter asked for a perspective on bringing up a child with autism. This was my reply:-

"Nothing is set in stone, which is probably just as well much of the time. It's like riding a rollercoaster. With fireworks. In the dark. But the fireworks are amazing and the troughs are never permanent :) xx" 

If someone had told me 14 years ago, when things were at their most bleak, that the journey I was on would change me forever in an amazing, profound and utterly fundamental way;

that it would take me places I never knew existed, never wanted to visit, but absolutely needed to go...

that I would still be fighting, living and breathing the battle begun so many years ago;

that I could never be more proud, despairing, distressed, elated and all-consumed over another's path, fiercely determined and completely terrified for their future,

then I would have been less afraid.

And most important of all that I would find a kindred spirit on this journey, that I would see myself looking back in the mirror and complete a lifetime's journey towards self recognition.

That would have been some perspective. I'm glad I have it now.

Autism is an alternative operating system. A different way forwards - not a dead end. The possibilities are endless.

Saturday, 23 May 2020

An emergent disease or a matter of convenience?

Note:- This was written in 2018, but has bizarrely republished today. Worth a read - but in context!

Supporting, treating and establishing good practice for an emergent disease is never easy. It takes individuals and teams taking a leap of faith in trying new strategies, putting their heads above the parapet and bidding for funds for research to support new theories. This last is a gargantuan task - as I've stated previously on this Blog, less that 1% of all research funding goes on gastrointestinal conditions. Absolutely NONE goes on paediatric gastrointestinal conditions. Although eosinophilic disorders do indeed affect adults (my father has EoE) adult treatments are less controversial.

In the UK, few medications are licensed for under 12s. Tertiary level consultants can, however prescribe the, - and many do, it's surprisingly common. But prescribing medication for an emergent disease in under 12s is VERY challenging, and should always be carefully monitored.

My Recipe Blog Stats bear out the fact that many come across the Recipe Resource looking for information on EGID - Eosinophilic Gastrointestinal Disease. I therefore felt in particular I need to write something to give the little information those in the EGID community have to my readers.

Sunday, 19 April 2020

The Lady Vanishes

I would say it's been a while... but I'd be repeating myself. I haven't been idle however, since the nationwide lockdown began (on my birthday weekend no less!) I've been blogging over at "Viral Music" in an effort to find a suitable outlet for my passion for Anglican choral music whilst also assisting our local church and choir community during the pandemic.

Pandemic. Not a word I thought I would be writing in 2020 - nor indeed one you perhaps thought you would be reading either. A word from a bygone era, it has catapulted us into a world of Big Government, economic inertia and community driven enterprise. After an initial, highly commendable explosion of positivity and enthusiasm, many I speak with now are feeling this energy wane as the weight of uncertainty over the short, medium and longterm human reality becomes all consuming. The difficulties in working from home - or indeed, lack of difficulty for some - are well reported, as are the problems in delivery of food supplies, PPE and the subject of our children's education. Concerns about shielding the vulnerable, supporting key workers, flattening the curve have all been well scrutinised and reported. What I am increasingly aware of however, and which almost no one is talking about - is the impact of lockdown on women of a certain age. More specifically the stay at home mums; the middle aged women who were quietly breaking free from the confines of the home and starting to spread their wings.

Photo by Edgar Hernández on Unsplash

I've joked on social media that I've "levelled up" on the domestic front and will soon be at "Abigail's Party" level, although I'm not sure if that's serving amazing canapés or quietly drinking gin in the corner...... but I was neither incapable before, nor lazy. I've spent years catering for exclusion diets, reinventing the wheel, cooking for a large family and supporting my parents. We can only self cater when we go away and I only have a cleaner because of a severe dust allergy - without her the house is spotless even if I do have a permanent sniff.

It's just that I want more.

Tuesday, 19 March 2019

EHCPs - not worth the paper they are written on?

There is much in the media about Education, Health and Care Plans (which replaced Statements in Education several years ago) and how challenging it can be to obtain an assessment for one, let alone  succeed in securing one which adequately supports your child. But if your child HAS one, has had one (and a Statement prior to that) for many years you might be forgiven for assuming his or her needs were recognised, addressed and that they were receiving support in school or college. You might breathe a sigh of relief that there was relative calm after years of stormy campaigning for adequate support. You might assume that you could go back to parenting, relish the mundane and take a back seat - because the "professionals" are doing their job.

That was my mistake this academic year - after over a decade of fighting for our son I made the classic mistake of taking my eye off the proverbial ball. As a result he's now on the brink of dropping out of college after six traumatic months - after nine months since his last Annual Review; during which time not a single professional has viewed his EHCP - or even commented on the fact that they haven't viewed it- because the local authority "forgot" to issue an updated one last May.

For Real. They "forgot".
Beggar's belief doesn't it?

Wednesday, 3 October 2018

Mental Health Crisis in our Teens - are we deflecting our own insecurities?

As a parent of four, not least of a young man with mental health problems, I have read recent headlines with interest, concern and despair.
But not for the reasons you might think.

We are facing a crisis in child - and particularly teen - mental health in the UK. A recent Guardian article stated:-
"Children and teenagers are facing an “intolerable” mental health crisis and an urgent cash injection is needed in schools to prevent a lifetime of damage, teachers, doctors and MPs have warned.”
But what actually IS the mental health reality in our young people, and what can we do about it? Is the “Mental Health Crisis” a recognition of pre-existent, long-standing issues, or a new phenomenon? Are we failing our children, or struggling to respond to a new, previously unseen problem which is escalating in our society? Should schools be doing more - or are parents the root cause? Or is Social Media to blame?

The reality may surprise you.
Related Posts Plugin for WordPress, Blogger...