This was originally posted on Twitter before Musk fucked it….I used to follow a guy called Dr Sayed Tabatabai, a renal doctor from Texas. Also a very talented writer. He did a series of tweets about his experience in medical school and I was struck with the parallels in being an unpaid carer. So with his kind permission, I wrote the following…

Our son Joff is 30 and lives with Lowe Syndrome, an ultra rare, complex genetic disorder that affects males only. It broadly concerns the eyes, the brain and the kidneys. It’s life limiting and life threatening. We also have two daughters, one older and one younger. My wings and my sun.

They say you should feel lucky to be here. And I do. They say it is a privilege, many people would kill to take my spot , so I should be grateful. And I am. But there are things you’re left to discover. Things taken from you.

The day my second child is born is one of the happiest of my life. I’ll never forget the relief my husband was in time for the birth. Things begin so well too. Safe delivery, 8lb 4oz, great Agpar score. Now we have a boy and a girl, a braw wee family. But I have no idea what’s coming.

Within hours, we’re plunged into the world of SCBU, hypotonia, a lack of red reflex. Our baby has cataracts! They operate at 10 days old, a record in Scotland at the time. They test for Duchenne’s, Maple Syrup syndrome. He’s fitted with contact lenses, begins physio.

I’m expressing milk to take to hospital for a month, more, before he gets home. There’s no further information, but here you go, have a steep learning curve dealing with contact lenses. His nystagmic eyes are so tiny. Are we hurting him?

Not all parent carers have the same experience. Some get a diagnosis for their child. Some never do. Some are raising a disabled child and siblings. Some never return to their career. Some exist on state benefits. Some have extended family to help. Some are drowning, not waving.

And then there are those parent carers driven to try every therapy, medication and treatment known to man. Unknowingly, they can make you feel like utter shite for just getting through the day in one piece without losing it entirely. Do I want to cure my son? Is there even a cure?

Not every parent carer makes it through. The unspoken rule is that you’ve gotta make it. Nowhere is it explicitly said that it’s ok to fail, that you may need to step out for a while. Many of us are buried in guilt and the weight of responsibility.

I never think about the part I lost of myself along the way. Not anymore.

It’s a question I grapple with most days. Some days the voice is louder than others. Am I destined to live this twilight zone existence as long as my son lives? There’s nothing mandated to ease the toxicity of this loneliness. They don’t warn you about a lot of things.

You need to be an unpaid carer to understand unpaid care.

They tell you things will get better. And on some level, they do. As your child grows in their own unique way, so do you as a parent. You learn from other parent carers, from good guy professionals, the Third Sector. You may achieve some equilibrium. Perhaps. Not for everyone.

So much of this path feels like it’s out of your hands. You never expected to have to knit health, education and social care together, and they’re never easy bedfellows. You might or might not get the service you seek. These things are not in your gift.

Your child becomes school aged. Face an entirely new world of fears and stressors. Become overwhelmed again. There’s always something humming alongside, shouting alongside. You may have lost a veritable mountain of earnings, you may qualify for welfare. The caring loop looms.

You become the parent of an incapable adult. Prove your capacity for Guardianship. Still struggle with the decisions you make and those the system makes for you. Cog in the machine. Bear the indifference from an unknowing public. Deal with survival so closely, it’s woven into you.

Through it all, on every level, you wrestle with a system. A system that wasn’t designed for you, wasn’t designed for your child. A system that’s steeped in resistance to change at every level, a system designed to propagate itself. Whose roots run deep.

There are wonderful things about being a parent carer. Immense and unique experiences. But understand, parent carers aren’t even taught, we’re forged. Melted down and reformed. Made invisible and kept invisible. Destroyed, depersonalised, disempowered. Again and again.

So when parent carers, any unpaid carers rise in record numbers, understand that it isn’t always a choice for anyone to make. It’s a job that the State expects you to fulfil for years. There’s so much expected, so much you give.

We all need care at some point. Tell me, who cares for carers?

It’s been a strange aul’ year since I quit Twitter/X.

The site had been deteriorating for quite a while in terms of its functions and the content you could see from your follow friends. The algorithm kept pushing strangers at me, ones whose views I did not agree with. (Viz: fascists.) The last straw was learning about a proposed data mine of names and phone numbers, eh, hell no! to that. So I gave a months notice and quit, having put a foot in BlueSky first so people would know where to find me. ( I also tried Mastodon and did not really understand it )

However, after a short while, BlueSky began to grate on me and decided to give Threads a go. It’s not perfect, but it’s the best fit for me. I enjoy looking at Insta but not posting there because I don’t have the skills to make things I’d be happy showing…my efforts are pretty basic. I enjoy certain aspects of FB, a group who do cross stitch, one that’s for fans of Tenacious D, a Peleton group. But day to day FB is whack a doodle. Too many pages and features for the average person to take in. I sometimes get angry at the loss of so much friendship from Twitter, the alleviation of so much of the loneliness of being an unpaid carer. IYKYK. It’s sad to think of the glory days, how they’ve been sacrificed on the altar of a person who is an actual danger to democracy.

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I’ve been looking recently at some artwork being displayed on the topic of loss, so many very different outcomes to the same prompt. One particular artist redacts the texts of high end magazines to change the meaning of the messages within and paints over the existing images to deliver their own political sense of denial, hope and loss. I find this art to be both confrontational yet complex. It also challenges me to reflect on and defend my own political outlook. I admire their work greatly.

This art triggered a memory from when the first Miss Fisher was born in June 1993…

I was around 10 days overdue when a routine antenatal appointment picked up on a loss of amniotic fluid accompanied by a modest raise in blood pressure. It was decided to induce the baby in case of pre-eclampsia, so I was sent home for my dinner and asked to come back in at 9pm. ( It was mince, tatties, peas, carrots and dumplings – just so you know – and I can assure you that it was much better going down than it was back up a few hours later. )

The labour was slow and difficult, so they offered me an epidural and spent much of the rest of the labour asleep. I didn’t understand the instructions for the gas and air; I think I had a pethidine injection at one point too. Anyway, as labours go, I had a pretty nice time of it.

24 and a bit hours later, Miss F appeared by ventouse. I had made such a nice house for her that she needed hoovered out! By and by, I got transferred to the ward. Baby was little but healthy at 5lb 9oz and I was knocked for 6, so we stayed in hospital for a week to get our acts together. I need not describe my first visit to the bathroom after delivery, I had never seen or used a bidet before and I can only prostrate myself with embarrassment to the poor cleaner who had to tidy up after me.

I was put on a four bed ward and the lassie diagonally opposite me was a bigger lady herself, but also her bump was massive. I’ll call her J. It turned out that she was 10 days overdue and was in for bed rest. My enduring memory of J was her couthy unconscious comedy in the way she related to people. It’s just such a Glasgow thing.

When she found out I had been induced due to higher blood pressure, J made it a mission to oversalt all of her food and make every nurse, doctor and staff member aware of it whenever they were on the ward, in the hopes they would induce her too. One day there was another lady who walked into the ward, pulled the curtains around her bed, came out in her nightie, walked to the delivery suite, had her 6th baby and after some tea and toast, walked out with it to catch a bus home, in just about an hour total. Of course that caused ructions as if the staff had given her some preferential treatment for such a quick labour whilst J was sighing and dying from her corner of the room.

It was a very quiet Sunday afternoon and J and I were both bored. I had been told I was getting discharged later, but I hadn’t heard back from anyone in a while, so I was a bit despondent thinking I’d be staying in yet another night.

We sat at the communal tables in the centre of the ward and idly flicked through some old magazines other patients had left behind. They were mostly glossy, high end magazines, full of people and houses, cars and gardens, well outside our ken.

A junior doctor put his head round the door.

“Hey doctor, gonnae induce me, eh, gonnae? Ah’m dead fed up.”

Flustered, he quickly left, J tried to waddle down the corridor to catch him but to no avail. She just wasn’t fast enough!

Flick. Sigh. Mutter. Flick. New page. A woman wearing the most godawful cardigan from a catwalk show.

Here, she says, pointing at it and covering the text underneath with her other hand. How much do you think that is?

Unsure, I guessed…erm… £90? ( which seemed preposterous to me)

Naw, she says, it’s fucking seven hunner and sixty pounds. I could buy a fucking car for that. I agreed.

At which point our dinner appeared. We had both ordered a burger.

God knows how much I love the NHS – especially the Scottish NHS – with all my heart, but sometimes their catering is just…shite.

There was two of the most dried up, cold, unappetising wee burgers, each sandwiched between a wee dry bun, no butter, no mayonnaise, no salad. No fries. I want to say there were boiled potatoes with it, but I can’t be sure. The dried burger has blocked it out of my memory.

“FUCKING SUNDAY DINNER”- J shouts at the back of the person who delivered it – “LOOK AT THIS FUCKING SHITE!”

“SOME PEOPLE ARE SPENDING SEVEN HUNNER POUNDS ON A FUCKING CARDIGAN AND WE’RE EATING THIS GARBAGE!”

And then she took herself to her bed without her so-called *dinner*, pulled the separating curtains around her and spent the next hour or so snorting with disgust every so often.

So I did get discharged later that day. J took a note of my mum’s address where we stayed for a while before heading back home, so she could write and tell me when her baby was born. Pre mobile days, innit.

I just missed out on the fun, and she had a 12lb baby boy the next morning!

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When I think of glossy magazines and the endless capitalism hurled at us; aspirational infuriating shite that means nothing to the working classes, I think very fondly of J and her simple righteous fury at a £700 cardigan. I think of how the artist I mentioned is subverting capitalism as an act of resistance and using their privilege and platform to promote antifascist messages.

And that was also the last time I felt like myself and not the mum, and then unpaid carer, I was to become.

Good morning to everyone. I hope you and yours are well and thank you for being part of the Carer’s Parliament today.

I’m Fiona Fisher, mum of three adults and unpaid carer to my son Jonathan who is 27 and lives with Lowe Syndrome, an ultra rare, life-limiting, complex genetic disorder that affects boys only. Also known as Oculo Cerebro Renal syndrome of Lowe.

Lowe Syndrome gives rise to a number of diverse problems with the eyes, brain and kidneys. We know of only two other young men in Scotland with Lowe, so it’s a pretty lonely and scary journey for any family to undertake.

I have a photo of Jonathan’s wee choochie face to show you – so you can picture just whose unpaid care I’m representing today. Jonathan is also known as #BoldJoff and I have been providing round the clock unpaid care since he was born. His arrival completely changed the direction of our lives, and we willingly bent our lives around him. When he turned 16, his dad and I applied to be his legal guardians under the Adults with Incapacity Act, which was granted on a whole of life basis for both welfare and financial reasons.

He is an utter legend who brings so much laughter and happiness to our lives.

Tomorrow, will mark 82 weeks caring without a single break. No dayservice and no respite of any kind. We have been fortunate that Joff has kept in good health and on the face of it, is coping well with this new normal . Once again, we have bent our lives round him to make sure he copes. My husband is now able to work full time from home, I had been working part time in a parliamentary office since autumn 2017 but I regretfully had to give up my work due to mental health pressures of covid related casework on top of caring, and on top of my dad dying suddenly in August 2020.

I’d like to tell you a little about my experience when we first went into lockdown. Despite having a rare and complex condition, Jonathan was never invited to shield. I spent almost a month trying to find information about his rights and our responsibilities should he catch covid and need to go into hospital. I needed to know if I was able to accompany him as his legal guardian as he is nonverbal and has profound and multiple learning disabilities. I managed to liaise with his GP to have it recorded on his notes that we did not want a DNR applied to him automatically because of his learning disabilities. I was encouraged to make him a hospital passport with a potted history for staff, however I was reminded that unless it actually gets read and absorbed, it can often be quite a futile practice.

We eventually hunkered down into a routine. To me it seemed that unpaid caring is the perfect apprenticeship for lockdown, in the way I’ve felt socially and financially isolated, and I wondered if broader society being in the same boat might open some folks’ eyes to what we can go through as unpaid carers.

When last year’s flu vaccination came round, we were dismayed to find that both my husband and I were invited to have ours, but not Jonathan. It took a bit of sorting out to organise his slot and establish if both of us could attend the appointment as we generally need two people to hold him still in his wheelchair, and to enquire if it was a problem him not being able to tolerate a mask. It all went well, eventually.

I wish I could say the same of the covid vaccination for him. My husband had to speak to 5 different health care professionals over 4 different agencies, completing an online catch up form for him twice, whilst again, our appointments as his carers came in seamlessly. So this is a question I am keen to know the answer to – what learning, and what data is now being used in Scotland to capture who needs to take part in national vaccination programmes in a timely way? I fully expect that Jonathan’s flu vaccination this year will go in the same confused way as last year, and his covid booster likewise.

In other parts of my life, lockdown marked the start of personal access to online entertainment, plays, music, poetry reading, a couple of guided mindfulness session for carers, a monthly zoom disco hosted by none other than Alan Bissett. Some were paid events and others for free. It was just wonderful to have opportunities to enjoy diverse things at home without having to organise replacement care for Joff. These kinds of virtual events have all but tapered off and I’m feeling sad about that. For a while, I felt included.

A number of surveys came into my life including a 3 part UK wide study into how people with learning disabilities and their unpaid carers were coping with covid. Another recent one was by the Fraser of Allander Institute into unpaid care during the pandemic. The findings, as you might expect, are not encouraging or make for happy reading. Unpaid carers are on their knees without the usual support they might have for themselves and those they care for. Higher rates of depression, mental health problems and loneliness. A particular feature of caring for a child with a learning disability into adulthood was highlighted, which is the longevity of your care. What also struck me was a general lack of interest in the findings.

In recent days there has been a conference speech by Sajid Javid who says that families should be the frontline of social care. There has been a report published by think tank Reform Scotland and authored by Professor Paul Gray outlining the current and possible future framework of social care in Scotland. We’ve had a recent announcement by Humza Yousaf about the money about to be invested in social care this winter.

And nowhere in any of these does the phrase unpaid carers appear.

Roughly a fifth of the population of Scotland is looking after roughly another fifth of the population of Scotland and it appears that we’re being gaslit out of our efforts, Herculean efforts, to keep our loved ones well and out of hospital, largely without outside support, on a pittance of a benefit ( if you happen to qualify ) and without due regard and respect.

I think most of all, society holds so little regard, respect or even attempts to understand unpaid care.

I repeat, we’re on our knees.

I was lucky to open the audience dialogue in the very first Carer’s Parliament in 2012.

Then, I spoke about 5 things we should have rights to on top of our responsibilities – a better income, right to time off, right to an occupational pension, to health and safety training, right to emergency cover. In just under 10 years later, only one of those things has been partially met in the Carer’s Supplement.

People who know me in real life and online, I’m fairly confident would describe me as an optimist. But this huge section of my life now does not feel optimistic, I’m not looking forward to the new national care service, I fear that in due course, Joff’s dayservice will be permanently withdrawn. Our last meeting with social work in September 2019 showed our respite budget cut by 2/3^rd. I often wonder what’s been happening to his dayservice budget since a year past March?

I’m tired of unpaid carers being asked to be untrained, unpaid architects of their own salvation.

I don’t want to have to learn or understand the national or local framework between health and social care and all interested parties in between in order for me to comment on the efficacy of a solution or suggest my own. I’ve been caring full time for almost 3 decades, you can’t tell me that the problems are not well documented. Framework meetings that always, always turn into surgeries for carers who are just taking perhaps their only decent shot at trying to sort a difficult situation, housing, transport, medication, you name it, I’ve heard it brought up and the torment these problems cause.

I would just like an occasional night off, without feeling that I had to exaggerate my situation or go through a gatekeeper to get there. A gatekeeper who’s opening gambit is usually “the forms have changed”

I’d like to think that just over the horizon, help is coming, but honestly, I now think no bugger cares.

Above all, like most of you, I want a quality of life where both Joff and I are thriving and not merely surviving.

I’d like a little hope, please.

I thought it would be good to make a post to say what I wanted to say that couldn’t be constrained to 140 characters. This is the first solely political post I’ve put here and I’m pretty sure Joff will forgive me hogging his blog.

It’s been a strange few months and have kept it largely secret, especially online – but now I can let you know that on the 14th February it is my intention to put myself forward for nomination to stand as a councillor for the SNP in the ward of Dunfermline North.

Just let that sink in… me, a potential councillor.

Whodda thunk it? I couldn’t even have predicted it myself.

The process began back in August when I filled in the form to apply to be an approved candidate. Three people close to me in terms of their politics, their values and their hard work to secure an Independent Scotland approached me over the period of a few months beforehand and asked me if I would consider applying to be a councillor. The first two I laughed out loud at – why the hell would someone like me be considered suitable? I thanked them for being very flattering, but it wasn’t for me. 20+ years of unpaid caring has equipped me with many skills, but confidence in my “business” sense isn’t one of them.

The third person, however, gave me pause. What were these folks seeing in me that I didn’t see myself? So I had a very long chat with them about what was involved and slowly I could see me thinking, well, aye, I could do that.

Most of all what I was thinking was, the political landscape of Scotland has changed so much to the extent that if someone perfectly ordinary like me can seriously consider standing for public office,  that can only be a Good Thing, personally and collectively, as more ordinary folks like myself stand up and put themselves forward too. No more shall we leave the important decisions that affect our lives to remote control. But more of us can stand up and oppose those who blithely spend £17m on testing Trident yet grudge folks like Joff the resources and support to live a good life.

So the form went in and my decision was – if the SNP assessors think that’s good enough to go forward then I shall trust their decisions and processes. ( I fully expected a “thanks, but no thanks”) And then I was duly called for face to face assessment.

Boy oh boy, that was a tough day. It was very enjoyable to mix with other like minded people but the tasks that were set were no walk in the park. I was convinced that was me out. I wasn’t downhearted though, it taught me a lot too and I had,  at the very least, given it a go. And I was interviewed at the end of my day by a panel of three containing no less than the amazing Joanna Cherry QC MP, who I must say was hard, but fair and very supportive.

And then, frabjous day! I was on the approved list!

I am so thrilled, humbled and ever so slightly bricking it. I want to do a good job if I get there. “I dare to be honest and I fear no hard labour”. My mantra is now becoming “every day is a school day.”

At the outset of applying I made the commitment that if I got where I am now, that I would bin the @galluseffie account. It has been 1% a pain and 99% pleasure at the laughs and knowledge and meeting (sometimes IRL) such a bunch of “magnificent bastards” over the past 7 years – however, I was fully aware that the passion and coarse language I used there was not suitable for a potential holder of public office. If you cast your mind back to the stramash over Mhairi Black’s “maths is shite” tweet, consider the field day some people could have trawling over the many sweary posts I put up. I stand by them, but I don’t have to hand them over as weapons either. I felt very sad letting the @galluseffie account go, but its time has passed. “Finish each day and be done with it. You have done what you could. Learn from it; tomorrow is a new day”

And thus @FionaFisherSNP was born.

If you would be so kind to make a tweet to your followers to let people know that @galluseffie is now found at @FionaFisherSNP and I can hopefully regain contact with all you “magnificent bastards” again – I would very much appreciate it. Ditto FB friends.

And then let the activism begin…all the way to making Fife Council an SNP Council.

May the Fourth be with you!

 

 

 

 

 

It just occurred to me, randomly at teatime there, that today is the 20th anniversary of Joff being diagnosed with Lowe Syndrome.

When he was about 6 months old, he had some bone marrow taken from his hip bone for chromosome analysis, having previously discounted Duchenne’s muscular dystrophy, rubella damage and Maple Syrup syndrome.

The chromosome analysis wrongly threw up a cell – one cell out of a panel of 60 where there was an extra chromosome at number 18 and he was diagnosed for a time with a mosaic form of Edward’s syndrome. Pure Edward’s syndrome or Trisomy 18 is a truly awful syndrome, the children die very young and have major heart defects. So they scanned Joff’s heart and thankfully, it was pronounced normal. The other thing that was observed was the way he held his hands, with his thumb tucked in-between his middle and ring finger, a distinctive marker. So for a while #TeamFisher aligned with a Trisomy support group called SoFT which supported families living with Edward’s syndrome and Patau syndrome, where the extra chromosome is at number 13.

There were many families affected by loss and grief in that group and one letter still sticks in my mind today. On the day of their infant son’s funeral, the mum and dad took a walk on the beach afterwards, idly picking up green beach glass. Mum wrote a lovely description of how we expect our children to arrive perfect, whole and functional like a bottle, only sometimes to find they arrive broken and jagged, possibly un-lovely at first glance. Then the sands of time soften those jagged edges and living with such children becomes something new and different but no less un-lovely, they have a beauty all of their own.

And so as far as I’ve been able, I try and send a piece of beach glass with the story to friends whose disabled children have died, and hope it resonates.

Anyway, the mosaic trisomy diagnosis turned out to be a simple artefact – the dyes used to stain chromosomes are so powerful they sometimes distort the true picture and we were back to square one.

We went to the Raeden Centre in Aberdeen when Joff was just over a year old for a “developmental delay MOT”. A week long battery of interviews and tests and observations by doctors, therapists and nursing staff. One of the tests was to collect a simple urine sample from both Joff and I. Getting a sample off Joff involved a plastic bag with a structured top, surrounded by sticky tape to tape over his groin and hopefully catch some urine. His sample came back with very odd results. Joff was at the right age to begin manifesting his Fanconi syndrome, wasting albumen, glucose, some low molecular weight proteins but most importantly, bicarbonate into his urine. He began bicarbonate and phosphate therapy. Both gruesome tasting substances that we disguised with Vimto squash – the bicarb turned the drink greenish but we got the meds in.

So the geneticist now had a better idea of where to aim the next tests. They took a skin punch from his arm, twice, where a little gadget like a gun literally cuts out a small circle of skin for culture and analysis of the fibroblasts. The first sample was used up to no avail but the second went to Baylor University in Texas where the world’s first laboratory was able to perform a biochemical analysis to diagnose Lowe syndrome. We had been shown a photocopy about Lowe Syndrome from the Contact a Family directory of rare diseases and the lad in the picture could have been Joff’s brother! We now felt sure that this was the syndrome Joff was affected by, we just needed to wait for the test to be complete. The geneticist was kind but blunt. “He may live till he’s two or ten” And some other info about a variant of Lowe syndrome with a skeletal component. As it goes, neither of these bits of information were true. But information was so scant, so pre-google that we were just grateful for *some* idea of what was ahead.

As the inheritance of Lowe goes, it passes down the female line, or can be a one-off thing. I can honestly say I never felt guilty for passing Lowe onto Joff, I didn’t do it knowingly or on purpose, just a part of life that we had no idea, no control over. Mr Effie took it hard. He was convinced that something in his past had caused Joff’s disabilities and blurted out “I’m glad it’s not me”. I was glad too, because I never saw it as a thing to blame anyone about.

The test result came back negative for Lowe. We were floored. I wrote to the founder of the Lowe Syndrome Association, Kaye McSpadden and asked her for help. She gave me the email address of the wonderful Dr Bob Nussbaum and said he would be happy to look into it. Dr Nussbaum asked me detailed questions about my family history, Joff’s pregnancy, birth and symptoms. He strongly suspected Joff had Lowe and offered to run the test again, personally. Joff’s result came back. He had only 3% of the affected enzyme and it was working at low efficiency too. As far as I can tell, Joff was the first in the world to be given a false negative result for Lowe.

And so Robert Burn’s Day 1996 was the day we finally knew Joff had Lowe. 20 years of thinking about Lowe every day, sometimes with rage, sometimes with grief and loss , often with gratitude that it brought the Bold Joff into our lives, one in 500,000 and yet, one of Jock Tamson’s bairns. A magnificent journey and one that I’m sure Burns would have enjoyed.

 

 

 

 

 

 

 

For the 3rd time in 5 years, Joff has been called by the DWP ( Department of Work and Pensions) to prove he cannot work in order to keep his claim for Employment and Support Allowance ( ESA – he’s in the Support Group, ie those for whom working is impossible)

I have never tried to avoid scrutiny, or obscure any aspect of Joff’s capabilities or support needs. The WCA form of 20 pages now asks you to send in “supporting evidence” – letters from doctors, lists of your prescription medications, certificates such as being registered blind etc.

I cite that his main skills in life are finger feeding and looking at sunlight, but this is so reductive. He is simple in his tastes, yet a complex person to understand. However, below are the paragraphs I intend to send on the form where they ask at the start for an initial description of your disabilities and how they affect your daily life.

I ask you, having read this, would *you* need extra certification or 19 other pages of questions to know that Joff isn’t going to manage paid work? Would *you* think that this is a good use of the DWP’s time and energy, or indeed, mine? Do you know that it is also possible having all that information on paper, that they can then call Joff in for a face to face interview and physical assessment?

There simply must be a better way.

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Jonathan is a 21 year old man living with Lowe Syndrome, also known as Oculo-Cerebro-Renal syndrome or OCRL. It is a complex, ultra rare, life limiting and life threatening genetic condition that affects 1 in 500,000 males. He has been affected from before he was born.

Jonathan has profound and multiple learning disabilities, is registered blind, has epilepsy, hypotonic muscles, low bone density, skin cysts, Fanconi Syndrome – also called Renal Tubular Acidosis or RTA, is doubly incontinent and has autism. Treatment for Lowe Syndrome is supportive, there is no cure.

Jonathan cannot speak, read, write or count. He has no understanding of common concepts like time, days of the week, money, danger etc. He is dependent on constant adult support for washing, dressing, eating and drinking, getting around, playing, taking medication, personal care, looking after his contact lenses, and keeping him safe.

In 2010, Jonathan’s dad and I applied for, and got, lifelong Legal Guardianship of Jonathan’s welfare and finances under AWIA 2000.

Jonathan uses a wheelchair outdoors,  wears orthotic shoes, has handrails and a hospital bed at home. He also uses a special harness to wear travelling by car to keep him safe.

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(AWIA 2000 is the Scottish Adults with Incapacity Act, which gives suitable people who request it the legal right to act on behalf of, and in the best interests of, a person who lacks capacity to understand the world and give informed consent. It was a very intensive process of checks and balances to go through but now gives us peace of mind to always be the people recognised in law to be Joff’s advocates.)

 

 

 

 

 

I had a few bits and pieces to add on from yesterday’s blog post.

One was about the amount of people who think fit to abuse spaces. We’ve had many a shouting match out the window to people, as @premmedtiations said, “just getting a paper/the lottery/cashpoint/beers”, parked in spaces they were not entitled to because they were near the shop entrance. They do have a disability, called “ignoramical lazy bastarditis”. Supermarkets are common culprits but I think they have tried better as years have gone by to improve the monitoring.

When we first moved to Dunfermline and Joff was young, he was prone to ear infections. He came home from school one day and nurse said he’d been a bit crabbit after lunch, had a wee temperature but went ape when she tried to use the ear thermometer. I phoned our GP surgery and they told me to bring him straight along. Dr saw an ear infection and gave us a script for antibiotics. By the time all this had passed, it was after 5pm and our usual pharmacy was shut. Dr said that the big Asda had an in-store pharmacy that would still be open and off we went.

It was half five on a dark, cold and dreich November afternoon. Actually it was tipping it down. I had a four-year old whimpering with ear infection and a five-year old sibling, both hungry and out of their routine in the car. All the disabled spaces had been taken and I could see that three out of the eight spaces were taken by people not displaying badges. I waited for 10 minutes before someone left. I got the kids into the shop and up to the pharmacy, and while it was being dispensed, got them a snack and drink and hot footed it to the service desk and said about the number of people in the disabled spaces without badges and how I had to wait a considerable amount of time to get a space we were entitled to.

Oh, we’re not allowed to challenge members of the public for fear of physical recrimination. You can write to the manager and complain.

Gobsmacked, I did. And his reply was “don’t shop here at that time of day”.

Aye. I wish I’d kept the letter, I tore it up I was so pissed off at the ignorance it displayed. Could’ve gone to town on the disability discrimination act if I’d not been otherwise up to my neck in life at the time. Like I say, I think supermarkets have got better at monitoring the spaces and keeping them free. Not perfect, but better.

———————

Again, when we first came to Dunfermline, Joff was 4 and had held an orange badge for over 2 years. There was a rule at the time that if you wanted to park in the town centre pedestrianized part, you had to apply to Fife council for a local blue permit, to be displayed side by side with your orange badge. But you had to be 5 before you could have one, based on the DWP mobility criteria. So Joff could park the length and breadth of the country but not in his own town centre. Well that can’t be right, eh? So I wrote an impassioned letter explaining that for some children they had the badge from age two, but weren’t able to apply for mobility allowance till age 5, that no matter what car they were travelling in, they still had additional considerations of safety, behaviour, sensory impairment or mobility that pre-existed being 5 and shouldn’t bar them from parking in their own town.

Having been pulled up on this anomaly, Fife council immediately capitulated and allowed anyone with an orange badge to apply for their local blue parking permit. Man! The Power! The Power!

The feeling didn’t last long. Within a few months of getting the blue permit, everyone was migrated over to the single EU blue badge anyway. That’s my one and only Pyrrhic victory.

———————–

So now Joff had a blue badge and three years later it was due to be replaced. It was due the end of April 2002 and we were off to the Lowe Syndrome conference in the summer. In order to get all the family passports up to date, and to apply for one for the newest member of Team Fisher, we went in the January to get passport photos taken. Joff is a nightmare to photograph. He has no concept of looking at the camera, not keeping his mouth closed, or hands out his mouth – photobooths are just horrible and back-breaking to try to hold him up and face the front, and us not being in the photo too. We went to a place who could put a white sheet behind his buggy/wheelchair and capture a picture that way. Having eventually acquired 4 suitable photos of him – 2 went to the passport office, and two were headed for his blue badge renewal.

You’re supposed to give the council office 8 weeks to process a blue badge application, but I sent the form in early with the photos and a letter saying I know I was applying early and wasn’t expecting the badge any earlier than stated, but just dealing with the application as I had the photos to hand. A few weeks went by and I thought nothing of it.

Here’s the red tape bit though.

In February I got a letter on a Monday saying you shouldn’t have applied so soon, you should only leave 8 weeks before expiry and that I would definitely NOT get a badge any sooner than the expiry date of April.

Ok, that’s me telt! ( Later, I thought, what’s the difference anyway? the badge is pretty much given automatically to blind people, he needs it now, he’ll need it all his life, his sight is never improving, if anything I was giving us less time with the badge if I expected it early, not more)

On the Tuesday, I got a second letter, same office, inviting us to apply for a new badge as our old one was expiring. I tore the letter up and chucked it in the recycling.

WHIT? Just….WHIT?

On the Wednesday, his new badge came through the door with a comprehensive list of all the rules and places we could park in and around Fife. Expiring April 2005.

So follow my logic. The first letter was sent by someone who saw/rejected our early application. They wouldn’t have sent the Tuesday letter asking us to apply at the normal time. The Tuesday letter author wouldn’t have had time to send the Wednesday badge. Or maybe they don’t look at the names and tie them up. As far as I can see, there were three people in the office telling us three diametrically opposed things in three days.

And they wonder why I take a drink.

And let’s just see how it all pans out when Joff is “invited” to migrate from lifelong DLA, highest care, highest mobility, to PIP.

              

Joff’s orange badge, age 4.

I came across a fab blogpost this morning on Twitter by MrBoosMum @premmeditations via fellow parent of 2 children with additional needs @AlexaDWilson about the attitudes to us all being blue badge holders on behalf of our children.

Seeing Red Over Blue Badges

It struck me that almost 20 years after Joff first got his ( back in the day, they were UK orange badges before the EU blue badges ) the same stinking attitudes are still rife. Like Alexa, I agreed 100% with everything MrBoosMum had to say and inspired me to make some comments too.

Joff was lucky when he got his because the rules were that you had to be at least 5 to apply for a badge on the basis of impaired mobility, the same age as when you could apply for a Motability vehicle. He got his at 18 months of age, his ophthalmologist tested his eyesight and declared – he’s got some sight, but recording him as partially sighted isn’t worth the paper it’s printed on. I’m recording him as blind as in my opinion he will always have significant visual impairment and I suspect, significant neurological impairment. At least if he’s registered blind, you can apply for an orange badge for him, help you park at the hospital and the like.

Joff has always been little for his age. Joff has always been very young looking in the face. We were still lifting him and out the car manually at age 6 – 7 and it wasn’t till he was 11 or 12 till he got his first “wheelchair-looking” chair. All the ones previously were buggy style, colourful, small wheels, a “baby’s chair”. So these factors contributed to the ongoing public harassment we got parking up and getting him out of the car. In the public mind, blue badges = older people.

The idiotic statements, accusations, head shaking, tutting, fist shaking, window chapping, “you’re not supposed to be parked there” largely, I have to say, from older people.

Mr Effie and I were once on a shopping trip to Elgin, they had a disabled parking area at one end of the pedestrian precinct for 6 cars or so. We were approaching the area with Miss Effie Snr and the Bold Joff in the back of the car, passenger windows blacked out because Joff couldn’t cope with glare back then ( ironic, huh? ) Joff would have been about 3.

An older couple were reversing out of the space and Mr Effie put his indicator on to show he wanted to take the space next. The male driver stopped and shook his head at us, not fully out of the space. Mr Effie shrugged to ask what was wrong, he had left plenty room for him to reverse freely. The old boy shook his head again, pointing to us and mouthing something we couldn’t hear. Mr Effie gestured that he was going into the space and the man picked up their orange badge and waved it at us. So Mr Effie picked up Joff’s and waved it back at them. It was truly like something out of the “One foot in the grave” comedy. The man eventually moved, but shaking his head all the way. I think it genuinely didn’t occur to him that orange badges were issued to anyone under 65.

And I think that idea is common. People saw one or two thirty/forty/fifty somethings getting out the car with two tiny/bigger kids and think we’re taking the piss. When we’re still in the car, who the hell can tell* if it’s Mr Effie’s badge and he’s got hand controls, if it’s my badge and I have MS or the Bold Joff’s badge and he has Lowe Syndrome?

*those first two examples are illustrative, both Mr Effie and I are very fortunate to have good health. But how can anyone tell by just looking?

We were totally lambasted by a stout, red-faced wifie in Bristol Asda, came right across the road and out of her way to check our car and the occupants, you ought to be bloody ashamed of ourselves, scumbags, fit young people stealing pensioner’s spaces. I wasn’t polite, because she came at us first, all fur and feathers flying, I responded in kind, brandishing Joff’s picture on his badge – I told her to eff off and that my son is dying. ( I’m totally ashamed of that incident, btw, it definitely wasn’t my finest moment, I had meant to say life-limited but the heat just took over )

Occasionally we’d get a quiet polite enquiry/telling off, “you know these spaces are just for badge holders only?”

“Yes, and we’ve got one, thanks”

At least they mostly had the good grace to look embarrassed, because we had been clearly accused and judged long before they opened their mouths.

We didn’t plan to have Joff be born disabled and we would love to not need a blue badge. ( my husband’s ex-colleague said once that we were so lucky to have a blue badge, cos we could “park anywhere we liked”. Yay, go us! )

When Joff was a baby I read a story about a young woman who had become paraplegic through an unusual accident. She’d fallen awkwardly down a railway embankment at a pal’s garden party trying to rescue a child who’d wandered down when no-one was looking. The kid got saved, but she lost sensation below the waist, including her bowel and bladder. So she had to time her visits to the toilet quite carefully or she was at risk of having an accident.

She was visiting a public building one day for an important meeting, driving her adapted vehicle. She couldn’t get parked close to the entrance as some inconsiderate dick in an open topped sports car without a badge had stolen a space. She had to park some distance away and by the time she’d sorted out her wheelchair and wheeled to the door of the building, she’d wet herself. And to add insult to injury the driver of the sports car breezed by her, and jumped into the car without opening the door, while she went by in tears, wet through with urine.

That’s almost 20 years since I read that story and if I was ever tempted to take a disabled space illegally, there was the human side behind it. I have never, nor ever will use a blue badge space without Joff being in the car.

So clearly there’s a few issues behind the ownership and use of badges.

Getting/renewing the badge – not as easy as folk think, especially for children. And definitely not emotionally easy. Here’s where you tell the public, my kid’s body or mind or behaviour is so radically different from typical children we need help every chance we get. A small reminder in a lifetime of small reminders that your kid is not the same.

And then there’s…

Being accused of having the badge illegally – children don’t get badges/ they’re only for old people. Yup, we parents and carers are that grasping.
Abuse of the badge by people who shouldn’t have use of it – just borrowing granny’s badge or indeed, people who have since died.

Abuse of the spaces by utter arsepieces who should know better.

I have a good/bureaucratic story about one time I applied for a renewal of a blue badge in Fife.

I’ll keep that for next time.

One last thing Columbo, for @premmediations and @alexadwilson the staring gets far less accusatory and more pitying as your kids age. “Out of the frying pan into a bigger frying pan…”

The title of this post describes the nonsense mutation we have in our family, in the amplimer for exon 11 on the OCRL gene, q26 on the long arm of the X chromosome, normally coding for phosphatidylinositol polyphosphate 5-phosphatase which is involved with inositol phosphate metabolism (KEGG and REACTOME), clathrin derived vesicle budding, metabolism and the rho GTPase cycle. The OCRL gene was present in the common ancestor of animals: the mouse, chicken ( Gallus gallus )(how apt is that??) lizards, African clawed frogs and zebrafish.

Most of the above I’ve had a nodding acquaintance with for 17 years or so… but the intimate knowledge of having a son living with OCRL has now reached 21 years.

The Bold Joff is ineffable, and I’m frustrated beyond belief at my inability to capture him on paper, his way of living beside us but not of us. How complex he is to understand, but how simple, and largely content, a life he leads. How just observing his wee face for a few moments and see expressions that you don’t understand constantly flitting across his face, but never mirroring us. That, sometimes, he is so completely unconsciously comical and if you laugh at his expression, he sometimes conspires to laugh along, but he has no idea why you’re laughing. And he probably doesn’t know why he’s laughing either.

I haven’t always been wholly grateful for the service of being his full-time carer. I’ve been resentful at times in the past of some of the drudgery involved, fighting the system and how the rest of the world feels like it passed me by. I’ve not lived a normal life, and there’s not another soul in the world who knows exactly what that’s been like. I only hope that I’ve done my best to give him a good and happy life so far and kept the bad times to a minimum.

Just spend a scant few days away from him, the need to connect to that simple and beautiful wee soul of his is overwhelming and I realise what an utter gift he is. I am grateful. Everyone should have/know a Joff.

Happy 21st Birthday, The Bold Joff. May you have all the sunshine, num nums, side-to-sides and raspberries you could ever want.

If you know me, online or in real life, you’ll know my opinion on Carer’s Week. It comes strictly under the heading of “Piss on Pity”. I’m not a hero, sung or unsung*, I know the extent of the work I do on an hourly, daily, weekly, yearly and decadely basis.( yes, made up word, I’m tired and don’t care ;p ) For all the articles on the radio, TV and print, the patronising words, the offers of pampering, the “you’re so brave“  in 20 years, 21 in August, not one bit of difference was made to me by Carer’s Week.

I never learned a single thing from it that helped improve my life, or my son’s life and the wide lack of regard, anger and passion for change by society, governments and the third sector for 10% of our population is truly astonishing. I will moderate my words slightly to say I think there is a place for Carer’s Week, to encourage those who don’t identify as carers to acknowledge that, and learn that perhaps they can get some support and it’s possibly a place to begin networks for those new to caring.

For me, I feel forgotten, ignored, taken for granted. Invisible.

Anyway, a few carers I know on Twitter took hold of our own hashtag #RealCarersWeek. We sought to vent, to help people understand some of the utter shengus we go through, the high level of responsibilities versus the almost complete lack of rights. I got into the hashtag at the start of the week, quoting my many weel kent facts and figures. By the end of the week, it was an echo chamber of carers acknowledging and empathising with each other, nothing being achieved than some real home truths being told. I salute everyone who contributed, I wish it had trended. I’m not surprised in the least that it didn’t. History will harshly judge how we are supported, but that’s of scant comfort now.

To counter the huge feeling of negativity brought on by last week, I thought I’d do a roll call of goodness. It’s by no means comprehensive, but I want to remember and acknowledge as many sources of support for the Bold Joff and Team Fisher over the years as I can….

Mrs Freitag ( Physio Sick Kids Glasgow ) Dr John Dudgeon ( Paed ophthalmology surgeon) Dr Charles Diaper ( Paed ophthalmologist) The Eye Infirmary Glasgow for contact lenses. Linda Scott ( Health Visitor).Jonathan Caddy ( Peripatetic teacher for the Blind ) Judith Binney ( Physio ) also Occupational Therapist and Speech and Language Therapists whose names I forget, Ann Ingram and Irene Stewart and the Ladybird Pre-School Special Needs Playgroup and committee members, GP’s Dr MacKenzie and Dr Ian White, Crossroads Elgin, Aberlour Children’s Trust ( Alba Place in Elgin ) Kevin Buckle ( DJ and fundraiser) Dr Hutchinson ( Ophthalmology Aberdeen Sick Kids ) Dr Charles Auchterlonie ( Metabolics ) Genetic Team at Aberdeen Sick Kids, The Raeden Centre. Mr McPherson Optician, Robert Henryson ASN school ( Lynebank, Dunfermline, which later changed premises to Calaiswood ASN school, Duloch, Dunfermline) – there are literally hundreds of people associated with Robert Henryson/ Calaiswood, honourable mention to head teacher Maureen Lorimer,

Dr Tom Scott, (school paediatrician) Fife Bus and Escorts, the many drs at Sick Kids Edinburgh, Mr Brown, Dr McLelland (neurology) Dr Barr, Dr Bath, Dr Schwann, Dr FitzPatrick and Dr Couzens (Metabolics) and the East Scotland support team, Dr Fraser Munro (paed surgeon) Dr Robert Humphries and Mr Nick Shortt (Orthopaedics), Dr Victoria Cook (Maxillo Facial surgeon), Dr Mary Porteous (Genetics), Dr Brian Fleck, Dr Andrew Blaikie and Dr Shona Sutherland (Ophthalmologists), VIS Scotland, Fife Society for the Blind, Mr Pattinson (Optician), Astley Ainsley Hospital, Lynebank Hospital and Etc wheelchair services, Mr Ramsay Wallace (orthotics)  Mr Bob Walley (clinical psychologist) Helen Downie (educational psychology) Mr Charles Ogilvie and associates, (Legal Guardianship team), Dr Jane Gibson (Rheumatology), Professor Turner (Renal) Mr John Toland, (epilepsy specialist nurse), PAMIS, Contact A Family, Aberlour Child Trust (Lochwood Park short break respite) Crossroads Scotland in Dunfermline, InControl Scotland, Fife Council building services, Ms Pauline Miller (Continence Service), Leonard Cheshire Disability day service (Rosyth) Helen Lynch Social Worker, the Lowe Syndrome Association and Lowe Syndrome Trust (UK) all my folkie pals who ran 5 charity evenings for the LSA, Dr Helen Marsden GP, Dr Robert Nussbaum Lowe Syndrome researcher par excellence, Dr Larry Charnas, (neurology and general answerer of daft questions) Dr Richard Lewis (Ophthalmologist extraordinaire), Dr Brewster (renal), Dr Philip Zietler (endrocrinology), Dr Olivia Schofield, Dr Sheena Allan (dermatology), Bellyeoman Surgery and the Coop Pharmacy in Douglas Street – the latter two being consistently epic beyond description…

I will have forgotten loads, there have been SO many people who have been part of our journey. They say it takes a village to raise a child, and if your child has complex needs….  If you don’t see your name, it’s my memory, not your impact that’s at fault.

This will be a frequently visited page as I need to remind myself of the good folks in life, or I fondly remember another name.

As @RobertFlorence says, “Love will win”.