Archives for the month of: August, 2015

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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.

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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.

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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.

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2015-08-27 11.47.53               2015-08-27 11.47.41

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…”

CI8uIBlWEAAv56a
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.