Why I Let My Daughter Dye Her Hair Pink (and blue and purple)

I’m riding the “bad parent” wave each time we go out this summer. TinyPants starts high school in September and at age 11 has asked for a number of things that I’ve agreed to despite parental tutting. Here’s why:

She’s always had a strong sense of identity and year 6 has contained some big knocks for her. Instead of the last year of primary school being a fanfare of goodbyes, she counted down the days until she could be rid of bitchy cliques & a head teacher that she openly hated (strong words, but she had big boots to fill & did little to endear herself), and then there were SATS.

Since September, everything was building up to these bloody exams. Art, music, creative writing, science – all the things that made TinyPants love school went by the wayside. Maths drills, spellings, & exam papers were the daily grind – after which there were hours of tearful homework.

“Do your best & we’ll be as proud as always” we kept telling her. In the end, she sat in pain for 4 solid days doing her best (she was allowed to get up frequently, but allowed no extra time. Fearful that she wouldn’t finish, she didn’t take breaks. By day 4, she had a roll of physio tape strapped to her). Previous end of year reports have been a joy to read with comments given across the curriculum; this year one page was given with a table highlighted in red for each of the maths & english exams – “did not achieve”. The pass mark is 100, in most she scored 98 & in one 94. No “how I enjoyed my year” comment, but a “how could I have improved in my exams”. In contrast, her sister has a high school report with gold stars for effort & all subjects treated equally.

I was furious. My baby has fought past being born so tiny that she lived in an incubator; she fought apnea; she worked so hard to read (something that didn’t come naturally); she has emotional intelligence to rival most adults; she is a young carer; she has mentally prepared herself to be in daily physical pain & smiles through it; she worked like stink to pass those exams and yet she was deemed insufficient by a margin of 2 marks. She didn’t see how close she was – she saw “failure”. The piece of my mind that I’d like to give Gove, Morgan, & Greening may leave me without a mind. This narrowing of the curriculum and constant testing is stamping out the creative sparks that we’ll need in years to come.

So she asked to rebel, much like getting a statement haircut after a big break up. Step 1 was pink hair and I agreed to dye it for the final day. Step 2 was leaving primary behind – I genuinely feared her going out in a blaze of verbal glory, but she took the high ground and walked out with her head high (mentally flipping the bird as she left). And that was that.

She’s using the summer to find herself & that includes strange hair colours. We’re watching a pre-highschool reinvention of herself & it’s fascinating. She’s ditched the little kid clothes for older, but sensible shirts & jeans. I’m watching me grow up from a distance, but with a lot more self-esteem! Yes, we’ll have to get busy with the Head & Shoulders to remove the colour before school starts (eye roll), but for these 6 weeks the girls are allowed to be their genuine selves, whoever that may be.

We’ve just got back from a week at Disneyland where she asked to ride ALL of the rollercoasters on hoiday. I feel sick letting her put her body through that kind of strain – she’s already in pain most days & her back is a big culprit. Ibuprofen, TENS, & physio tape already feature quite regularly. Now, I could insist that she protect her joints at all costs, but shit, what right do I have to sap the joy from her life? She knows that adult life is going to hurt, but the pair of us are adrenalin junkies. At her age & into my teens I rode the coasters, I rode horses, I cornered so hard on my motorbike I could pick daisies with my teeth. So each time she wanted to go on a gut wrenching ride off Mr Geek went & rode with her.

Did it kill her? No. Ok, near the end of the holiday Mr Geek had to carry her out of bed & she gained wheels just like mum for part of the day as she couldn’t stand. Most days we paced quite well, the day before we’d thrown caution to the wind, but had the “best day evaar”.

Hell, even I rode a coaster – Mr Geek scoped it out and made sure it had head & back supports, I spent the previous day resting, he lifted me in – I screamed for the entire ride (on which my kneecap moved completely out & I pulled out both shoulders) – he lifted me back out & helped me pop things back, soothed the muscle spasms, then I rested for two days. All that pain for just 5 minutes? Yes. Totally worth it for feeling alive for just a while.

TinyPants looks at me and knows what’s coming – right now she wants to live as much life as possible instead of snatching 5 minutes of flying.

So, yes I’m letting her dye her hair far earlier than I ever thought I would, but it’s a small price to pay for the catharsis that its brought her. And as for Beanpole, well there’s no hair dye there – her genuie self blossomed at high school and my meganerd is blossoming into the intellectual fangirl that I expected, but she deserves a post all of her own.

Note: I’ve spoken a lot about pain here – for more info on Ehlers Danlos Syndrome, please read this post.

Working 9 to 5… and 6, and 7

Teaching is less of a job than a calling. It’s in our bones. We just can’t help ourselves.

This year I made the momentous decision to join the other 50’000 UK teachers who left in 2015 in stepping down as a full time secondary school teacher. Over the past two years, I’ve done that job on wheels and through a lot of painkillers, but in the end it wasn’t my crappy health that sealed the deal. 

I’m not actually leaving teaching. Instead, I’m moving to pastures new where the only grazers are sixth form students, retaining a very part time role in my current place, and offering online private tuition. It may seem bizarre to leave one full time sensible job to combine part time roles, but hear me out:

  • My sixth form teaching is the highlight of my day. But my subject is niche & in its infancy at my new college so whilst I build my little empire of nerds, hours are reduced. A Level Computer Science students challenge me mentally and I love seeing them fan the first flickers of a flame that grows to so many of them ending up in the industry, or at Uni studying the subject I love.
  • Leaving my current school is bittersweet. Here, I have friends, comrades, family. There are many things that try my patience to the bitter end, but parting was such sweet sorrow that I couldn’t leave completely. 
  • Private tuition brings a whole new dynamic to my teaching skills. In some respects it’s much easier than classroom teaching as there’s no rushing around dividing your time, or dealing with behaviour issues, and you get to develop a strong working relationship with tutees that is difficult in large classes. On the other hand, it’s much harder as you are giving constant input – there’s no quiet purposeful practice when “on the clock”, and many students who come to you as a tutor are there because they’re not keeping up for one reason or another. The stakes are high, but the rewards are enormous.

So that leaves me in a bit of a pickle for now. I’m winding down my full time role, whilst also not winding down at all as there’s still 7 weeks left to go, I’m preparing for my new role in September, and I’m already knee deep in online tutees in the evenings and weekends so I can hit the ground running (or wheeling) in September.

I’m exhausted. But therun up to the big jump to a new Lilly pad is an awful lot of fun.

So, for now you can find me here: www.TeachAllAboutIT.uk doing my thing & quite literally teaching Computer Science to the world!

I Do Not Like Green Papers Ma’am. @PennyMordauntMP

This article from The Disability News Service is a pretty accurate reflection of the state of the UK right now.

Having openly disregarded out of hand the findings from the UN that they are guilty of “grave or systematic violations” of the human rights of disabled people, our government is looking into making anyone claiming disability benefits meet regularly with an “employment coach” (read careers advisors with powers to take away your money). Now whilst this has been presented as helping people with disabilities get back to work, this will apply to anyone who isn’t in an institution. Read people needing physical care at home, people suffering a mental health crisis, people in constant relentless pain. People who can’t always fight back.

As someone who is negotiating a reduction in hours to hang on to what physical & mental health that’s left, this is scary. The argument behind insisting that people with disabilities work is to give a purpose and improve mental health. Well my dear Tory MPs, let me give you some cold hard facts.
I love my job, but pushing through regardless has directly caused some very dark thoughts. And I am infinitely lucky to have the husband that I do because he listens every time I need to shout my frustrations at the world. Most people wouldn’t have the patience. (You, by the way, don’t deem him to be a carer despite dressing me every morning, helping me bathe, cooking for me, & cleaning. why? Because he does all of this AND holds down a successful job. Sounds fair, yes?)

Despite holding on by my fingernails, I work partially because I’m too scared that the state won’t catch me if let go.

A day of work leaves me with levels of pain that regular strong painkillers & morphine don’t touch. This is not “oh, take a nurofen & have a glass of wine”. This is unbearable pressure on my spine, deep bone pain in my joints to a level where without painkillers I’m physically sick. Now tell me how running your second home paid for out of Government coffers gives you a headache…

A day of work leaves me so exhausted that I can barely hold a conversation with my children. (I am eternally thankful for my husband & our parents who take care of the important kid stuff). 

Physical pain takes a mental toll. I’ve lived my life as a pacifist, but I wish every MP who thinks this is a great idea could live for a month with these daily pain levels. Of course, they’d need to carry on with their current lives because why should we be cut any slack? It does you good to be at work after all.

Since I went downhill 18 months ago, I’ve been asked on 4 separate occasions by government employees (DWP, Social Services, & Occupational health ) “do you think about killing yourself?”. Always matter of fact, like it’s a reasonable conclusion to draw because EDS doesn’t have a cure & no one knows how to effectively manage the pain. 

Putting aside the wholly inappropriate nature of assuming that someone with a disability would consider death preferable to their current situation  being permanent, the answer has always been no. Until I started trying to work through another physical dip this September. So here I am trying to negotiate putting my health & family before my job. Because, dear Tory MP, it’s not a job that gives me a reason for dragging my arse out of bed despite it hurting to breathe a good percentage of my days. It’s my family. I make a difference by bringing up two beautiful & well educated children. By growing old with my husband and reducing my financial burden on the NHS by taking care of my health.

You can try & strip away disabled people’s dignity in the name of austerity whilst you pander to large corporations who pay less tax than I do, but in the end you’ll be seen for exactly what you are. Hopefully by the general populous, but better still, I’d love to be wrong about the whole religion thing and see you meet God at the pearly gates and ask you directly, “DID YOU DO UNTO OTHERS….?”.
Note: I have started my official response to the green paper, but the form is so long and poorly worded that it is testing the limits of my speech to text. It’s almost as if they don’t want responses…

Officially Funny. Or am I?

Soooooo… guess who got a nomination for a blog award for being a source of amusement?

The health blogger awards are quite big in my twitterssphere with many of my friends online sharing similar experiences of trying to quite literally hold it together and wobble through life. So, yeah, even being on the list is quite awesome – but winners are picked on endorsements.


Whether you read my blog to laugh at or with me, or if by some streak of luck I’ve managed to help in any way, I’d really appreciate you clicking the link & pressing the big purple “endorse” button to validate my online existence. 

https://awards.wegohealth.com/nominees/12945
Hey, you never know, you might be able to say “yeah, I knew her before she was huge”…. because in the words of The Brain “We’re going to take over the world”.

Clearly feel free to spread the link far & wide 😉

NARF.

A Moan At @DavidLloydUK About #Equality & #Accessibility

So, here’s a little email that I sent to my local David Lloyd leisure club after being told that the accessible access gate isn’t faulty, instead they’ve disconnected it. Why post the email online? Well, mainly because when verbally complaining, staff attempted the “think of the children” emotional line with me because unattended children had used the gate to leave the club. I have kids – I rather hold that it’s my responsibility to make sure that they behave. (Give it a few years when they’re teens, that comment may come back to haunt me). The next reason almost had me speechless. Almost. 

I shall post their reply once received…

Dear Sirs,

The Disability Discrimination Act (1995) states that it is unlawful for a service provider, without lawful justification, to treat a person who is disabled less favourably than other people for a reason related to his or her disability. Less favourable treatment might occur if a disabled person is refused a service that others are receiving, or is provided with a service of a poorer quality than that which others are receiving.

Able bodied members of the David Lloyd club in Worthing may access the club via an NFC turnstile system which automatically grants access. Previously, this was the same for the accessible gate for disabled & pushchair users. This is no longer the case.

I am a full time wheelchair user and currently in order to enter or leave the building, I am required to verbally attract a member of staff at reception who then must press a button to open the gate & let me through. Not only is this often not appropriate as other members quite rightly require the receptionists’ attention, but doing so draws attention to my disability and makes me disinclined to make full use of the club. The very fact that I am not able to make use of the specifically installed disabled access gate without staff assistance because it has been disconnected from the NFC pad contravenes the above Act as a poorer quality of service is being provided specifically because of my physical disability. 

On a number of occasions I have requested that the disabled access gate be reconnected to the NFC card system as above and my request has been declined. Today, I spoke to your Sales Manager of the Worthing club at which we hold a full family membership. Upon requesting a date when the gate would be fixed, I was informed that it would “never be reconnected”. The reasons stated for this were that other members had been attempting to let non members into the club, that thefts had occurred, and that children had used the gate to leave the club. Based upon the legislation above, I will address each of these below.

On the matter of members allowing non-members into the club, this is surely a matter of insisting that all members use the turnstile gates unless they are pushing a pram or have a physical need to use the gate. This onus is on the club staff. It is not acceptable to remove equity of service to disabled club members where a reasonable alternative is available, albeit not as easy to implement. 

Where theft was used as an excuse to remove the equality of service, even if it was proved that thefts were directly linked to non-members, again it is not acceptable to provide poorer services to those with a disability when a reasonable solution would be to use the turnstiles as above and expand cctv coverage.

Finally, to address the matter of children using the gate to ‘escape’, with the exit turnstiles entirely open to exactly the same this is essentially a non-argument as these have not been closed off in any way. However, to give it consideration, across the rest of the club parents are reminded that they are responsible for the behaviour of their children. I am baffled as to why this would not apply to the front doors.

I would therefore appreciate your response as to how you intend to ensure that equal access to the club’s facilities will be provided for all members with reference to the Equality Act above. 

Regards

Mrs B

Blog notes:

Now for you who are saying it’s just a door, I know. But actually it’s more than that. It’s a general attitude that people with disabilities shouldn’t complain & just be grateful that something is provided. Or that there are fewer of us, so the majority is more important. Conversely, there might be more if they could get in without being highlighted as ‘other’.

And for those who I can hear audibly tutting because the person with disabilities dares to be a member of a decent health club. 1 – it’s none of your business. 2 – I work full time, so any stereotype of me using taxpayers money to swan about can be put to bed. 3 – and even if I wasn’t working, my club membership allows me to keep up hydrotherapy in a warm pool which reduces my need to use the NHS pool (at real expense) and subsequently other NHS services as physiotherapy keeps me as good as it gets. And urgh that I feel I need to justify myself.

Edit – their initial response. Which I feel just repeats the reasons I have listed. I’d be interested in your thoughts.

Good Afternoon Holly,

Thank you for your recent email regarding the use of the gate at Reception.

Our Members requirements are highly important to us and we aim to provide you with the best service and facilities that we can.

The Club chose to remove the card reader at the gate approximately 4 years ago for the reasons more fully explained below:

1. Members were taking the easy route and not swiping their card
2. Non members had gained access
3. There was never a card reader to exit the Club – Reception still needed to open for families with push chairs, Members who use a trolley style sports bag as well as for our disabled Members

With regard to health and safety, we also had to look at the fact that if an exit card reader were to be provided, kids could exit the club without parents knowing.

However, with all of this in mind we want you to feel comfortable and happy when using the Club therefore your points have been raised by [redacted], General Manager to the Team here at Head Office.

Currently, there is a Team here at Head Office reviewing card readers and service issues in our Clubs therefore please note that this is all under review.

Personally, I completely understand why you feel this way as I would perhaps feel the same if I had to keep getting the attention of a Team Member every time I wanted to enter or leave the Club.
However, I also do understand why for health and safety reasons we have taken the reader away.

I would like to thank you for your email and would like to assure you that [redacted] will be speaking with the Reception Team to ensure that for now (until we may add the card reader again) they are vigilant and quick to open the gate when necessary.

Best wishes,
[Redacted]
Member Communications Executive

Dear UCLH – let’s talk Communication Skills

Dear UCLH,

Specifically, the neurology team. Now we’re all professionals so should be used to peer review. So here’s a peer review based upon my experience with you today.

Before we start, it’s prudent to note that those with Ehlers Danlos Syndrome often have difficulty with adrenal control. This would explain why I am frantically typing this at 1am despite managing fewer than 4 hours sleep the previous night. My anxiety levels peaked today causing a heightened state of fight or flight. Those anxiety levels could easily have been managed had communication with me and more importantly between departments been clear.


What Went Well: 

The appointment letter was clear & concise and received well within the given timescale. Upon requesting a change of dates due to childcare commitments, your administration team were extremely accommodating and did their best to inform me as best possible in terms of available times due to the required 2.5 hour commute to you (based on good traffic). Alternative dates were agreed, arrangements and payments were made for parking as we were not given details of the hotel (see below), congestion charge was duly paid to avoid the issue of trains & chronic pain.

The junior doctor who saw me (albeit for a reason not made clear to me) was lovely. She took the time to listen to me and treated me with respect & intellectual parity.

I regret this section is not longer.

Even Better If:

The time leading up to my appointment was unduly stressful due to the lack of detail provided regarding my planned three day stay at UCLH. The letter stated what tests may be performed and that a patient hotel had been booked. This identified neither the specific hotel, nor the times of the tests, in fact the letter states that details were to be given upon arrival. With my husband having planned to work from his London office over the three days, both of these pieces of information were required, but not provided, even upon arrival. In contrast, we were treated as a nuisance that should have been more aware of the planned procedures. I accept that I thrive on lists & feel far more comfortable when I am of an exact itinerary, however much of this is based upon mobility needs and being away from home, these are often not met. 

The first test was in fact a 24 hour blood pressure monitor & I was asked if my BP was usually so high. No, it’s usually quite low, however I was in such a state by that point that I was suffering with palpitations & chest pain. This was to continue to heighten throughout my stay & accumulate into the first panic attack in my adult life.

As highlighted above, your junior doctor acted with great professionalism when faced with an overly anxious patient who wasn’t fully aware of why they were seeing get this particular doctor (the feeling was that they had been asked to see me to buy some time to sort out the administrative mess as no real medical conversation took place). Unfortunately, the same cannot be said for other staff.

When addressing a person with disabilities, it is polite to address them directly. Only twice have I ever had to make this point vocally and directly to someone who had not taken the hint. Today was that second time with a staff nurse in your day care unit manning the nurses station.

In order to correctly describe using P-E-E (point, explain, example), let me expand:
I was not spoken directly to as part of my care in the hospital by your staff nurse in charge of the nurses station. The nurse repeatedly refused to speak to me directly, instead asking the on duty nursing assistant to relay a message to me despite me directing my question to her and all three of us being within a few square feet of each other. For example, I asked what tests were to be performed today. Your staff nurse appeared disgruntled to be disturbed by a patient & directed her response to the nursing assistant with “tell her…”. 

This is not only highly unprofessional, but incredibly rude. A wheelchair user u just that; they use a wheelchair, there need not be any mental impairment. This happened on multiple occasions.even if the person with disabilities is not able to answer for themselves, talking over them as if they are not there is inappropriate behaviour and requires addressing.

Returning to the first point regarding provision of information, the key point of mobility, specifically being a wheelchair user was omitted from the referral to the Day Care unit. The referring consultant failed to tick the box identifying that I am a wheelchair user. Because of this, the tests were not set up to be accessible and the person setting up my blood pressure monitor voiced concerns that the tilt table would not be suitable as I cannot stand. Upon returning to the day care unit, my husband phoned & informed me that the hotel room that had been booked for us was not accessible. In fact, he had taken my small manual chair into the room & couldn’t get it past the bed let alone into the bathroom. It was now 4pm and the hotel were unable to move us into an accessible room. A message was left with the administration team to try to move us to another hotel.

By this point, I had neither eaten nor drunk anything since 6am and had not had access to my standard painkillers. I was exhausted & in considerable pain. My ‘ambulatory tests’ had so far not allowed me to leave the hospital and we still had no indication of where we would be staying. Instead we were ushered into a room that appeared to be storing drip stands and offered supper. I was far too distressed to eat and felt that no one was listening to my concerns.

At this point we called time of the whole experience and stated that we were going home. The nurse who would previously not speak to me directly, told my husband “when we can’t find you a hotel, then you can leave “. I’m afraid that was the final straw. We removed the monitor, placed it on the nurses station and left. These tests ran the risk of exacerbating my symptoms & potentially inducing fainting. I was not willing to place my health in the hands of people who couldn’t arrange such basic things as accessibility and showed absolutely no compassion for someone who was exhausted, thirsty, & highly distressed.

All of this wasted time and effort could be easily solved in one of two ways. An additional letter to the patient with an itinerary including the name & room type that has been booked. This simple mail merge document plus a postage stamp could have highlighted almost all of the issues encountered today with the ability to solve them well in advance of the day of testing. An even cheaper alternative is to create an email mail merge – this saving postage, paper, even time stuffing the envelope.

Simple forethought, communication, and planning.

Call me what you like, I can’t hear you!

Ehlers Danlos is the Syndrome that just keeps on giving. Today I had the joys of having a tuning forks placed on odd parts of my head. No, this wasn’t some strange hippy healing ceremony, but a real life scientific hearing test.

My doctor bashed it against her desk then placed it on various parts of my skull. Everyone else could hear it except me. Seriously, you heard that? Shit.

Having checked her unusual methods on Dr Google, this was to see the type of hearing loss I have. It is actually a thing that rules out my sinuses or ear canal causing the issue.

I’d suffered a bit of hearing loss after having meningitis in 2008, but not huge volumes or enough to affect my daily life. More recently, I’ve caught myself snapping at the kids to stop mumbling when we’re in the car & insisting that Mr Geek be facing me when I talk to him because he’s talking in the wrong direction… I’m surprised no one had mentioned it TBH. The penny dropped when I went back to school and couldn’t hear the kids when they answer questions in class. I can see their lips move, but all I get is a background hum if there’s other noise. There is ALWAYS other noise in a school & I’m exhausted by lunch from second guessing what they’re saying. But I didn’t really want it to be a thing (I have enough things! I don’t need any more things.). It is apparently quite an obvious thing according to my graphs. See? Graphs. I love a good graph.

The joys of EDS means that the bones in my ears aren’t held together as tightly as they could be. Of all joints, my ears?! FFS. 

So what now? Well, I started off with an off handed tweet.

…and now, I’m trying out some basic hearing aids to see if they help & waiting to see how my referral to Action for Hearing Loss can help. Things may take a little while because I’m under 55 and I’m not meant to lose my hearing before I get old. I am a woman of many talents: I can lose my mobility, consciousness, AND my hearing. Go me.