Budget 2016, ESA Cuts, PIP and Welfare Cuts

Until a ’cause’ directly impacts upon your life you have little interest in it, it is not important to you and does not affect you in any way.

Perhaps you can feel sympathy towards people afflicted by disability, mental health issues, poverty, homelessness but as it doesn’t directly affect you’re less likely to campaign for it.

With Teengirl’s diagnosis of Ehlers Danlos Syndrome disability suddenly directly affected us. And Teengirl is now eager to get involved in helping change things for people with disabilities.

Last night after a long chat about why the world isn’t more disabled friendly we came to the, not too startling, conclusion that it’s because it affects a minority not a majority.

Those not affected by it don’t ever consider it.

Before I had children I’d no idea how hard it would be to get across London on the tube with a baby  in a buggy. Prior to losing my job last year I hadn’t considered how people on benefits were made to feel like scroungers and how welfare cuts and changes would impact upon vulnerable people who have been propelled into joblessness through no fault of their own.

During our chat we realised that our current (and previous) government is made up of people who have never experienced the things that are important to many of their constituents. So they disregard them because they don’t what it’s like to have their lives crash around them suddenly.

How many MPs have ever had to claim benefits? How many are single parents? How many MPs are disabled? How many have suddenly lost their job without a safety net? How many MPs have lived on less than the average salary? How many have struggled with mental health issues? How many MPs have had their lives turned upside down in a car crash?

How many MPs actually access the NHS? How many have chronic illnesses? How many MPs have got to the end of the month, looked at their bank account and realised there’s only £20 left and had to make the hard decision between food or electricity?

How many politicians have lived in real poverty?

You see, if the people with the control over our country have not experienced the many various issues that affect so many of us in so many different ways they cannot effectively, considerately and consciously govern.

Because they disregard so much of what affects us because they’ve never lived it or felt the impact upon their lives.

It’s time, I think, for our Houses of Parliament to be filled not with sociopaths, nepotism and moneyed old boys but with men and women who have lived in the real world.

I want to see a government made up of people with disabilities, single parents, people who’ve experienced real poverty, people with mental health issues, working class heroes, middle and upper classes, all colours, all religions, all sexualities, young people – all together in one big melting pot of a parliament truly representing the people of this country.

With each of them earning an average wage and a normal level of expenses.

Not a parliament filled with people representing the good of the party, people chasing the money, fame (infamy in some cases), power and control with no knowledge of real life.

I’d step into the political arena in a second but there’s no party I could affiliate myself with.

None of them represent me or the future of my children. 


Twenty One Pilots – An Open Letter

Two years after Teengirl dragged me along to a Twenty One Pilots gig in a tiny Brit venue we’re finally getting to see them again, this time in the much larger Brixton Academy.

In honour of going to see our family’s favourite band on Wednesday here’s my original blog (complete with my gig pix) I posted when Twenty One Pilots first blew me away:

Teengirl dragged me to a gig where she described the band as “a screamo, ukulele playing, rapping, emo, piano playing, dance band” I thought this is a band that needs to pick a genre!

And so it was with no expectations I went along to see this gig in a tiny nightclub in Brighton filled with teenage girls and the odd very drunk thirty-something man – a few of whom got carried out of the audience by the bouncers while the teenagers all behaved themselves!

After my experience standing on the balcony of The Haunt looking down on the moving sea of bouncing girls I was moved to write an open letter to the two men of Twenty One Pilots.

Here it is:

Dear Tyler and Josh

As a mum in my early 40s with a life full of kids I don’t give over any of my time to listening to new music and new bands.  So I had never heard of you and despite teengirl trying desperately to get me to listen to you and repeatedly telling me I’d love you, I am saddened to say I resisted and so you were entirely new to me when I saw you on stage in your balaclava masks that Monday night.

To be honest with you I wasn’t looking forward to seeing a band who rap.  So I thank you from the bottom of my heart for not being stereotypical misogynistic, show off swag fuckery, violence inciting rappers.

I also appreciate that you don’t sing meaningless songs of great love or lost love or boppy pop shit with lyrics that make no sense or are overly sexually explicit for the age group listening to them.

With fame comes great responsibility: your songs could just be something to dance to or they could be the one thing that allows our teenagers to feel heard, listened to and understood.  I am grateful to you for taking that responsibility seriously by writing poems (and I do believe them to be poetry) that can change a teenager’s intention, open their heads and their hearts.  Too many in the public eye don’t take their responsibility seriously and far too many abuse the power given to them by the public (yes Mr Politician I am talking about you).

Tyler and Josh from Twenty One Pilots in Brighton

Twenty One Pilots

All we all want is to be heard and to be acknowledged, be that as adults, toddlers or teenagers and I thank you for writing lyrics and music that does just that.

I thank you for starting the conversation with our teenagers about self-harm and suicide, for opening your ears and your eyes so you can open theirs and mine.

Thank you for acknowledging that these very real and very strong emotions exist in their hearts and take over their brains.  As a mum, I appreciate your fear for our teenagers and I am grateful to you for telling them you understand.

Because sometimes just the understanding from an adult is all it can take to save a young person from the pit of hell.  Far too often we as parents and responsible adults push their fears to the side, don’t allow them to express them, tell them they’re not real, not to dwell on them, to just get over them.

Tyler from Twenty One Pilots sings out his emotions

Tyler putting his pain out there for all to see

As a parent I wonder if we do this because we are afraid that if we poke the monster, pull back the layers of this raw anguish we’ll make it worse for them?  And so they never get given the tools to deal with the pain of simply growing up in a society that says it’s not ok to feel when all they can do is feel as they look inside only to find themselves wanting.

And then when our children hurt themselves intentionally we rail against the world, god, the internet searching for someone to blame instead of visiting some introspection into our lives.

Thank you for writing raw, honest and authentic lyrics and music that really, truly speaks to teenagers: lyrics that let them know its ok to be different, to be curious, to wonder what if, to question the status quo, to ask how it might be changed for the better.

Teenagedom is the beginning of all things self: an egocentric rollercoaster of self-awareness, independence and boundary pushing.  Being a teenager means inspecting yourself far too often when the self-awareness monster rears his ugly head, feeling alone under the microscope of peers inside the institution we call school.

And so they pull down a mask and become a façade to fit in – something you, Tyler and Josh, obviously understand and are not afraid to admit.

Tyler from Twenty One Pilots at his piano at the Haunt Brighton

Tyler pulls down his mask

I cannot thank you enough for being authentic, honest and real.  You, Tyler, are a poet.  I hear haunting spectres of Sylvia Plath and Stevie Smith in your words.  When I was a teen their words were my saviours: they showed me I wasn’t alone, I wasn’t weird and that to question death and love in the same sentence was absolutely normal.  I take my hat off to you for your intelligent metaphorical rhymes that speak volumes to my daughter and other teenagers.

I love that you put intense, honest and empathetic lyrics to a bouncy happy beat – a beautiful metaphor of teenagerdom.  I feel your pain as I dance along.  And I understand teengirl just that little bit more when she tells me her favourite Twenty One Pilots song – her favourites change with her moods.  Just as I love that you break the music rules, don’t fit into a box and can’t be labelled.

Tyler from Twenty One Pilots standing on his piano at the Haunt Brighton

Bathed in the light

Teengirl gets that you get her.  She bounces to your beats and shouts along to your lyrics in the cool way only a teenager can.  And I know that your words have gone a long way to helping her heal and understand.

Over my many years loving music there have been only a few musicians with whom I have become obsessed, even fewer who have touched me and spoken directly to me.  In that short list you’ll find Janis Joplin, The Doors, Leonard Cohen, Bob Dylan and BrightEyes.  And now, Twenty One Pilots have joined that list because I am already quite obsessed with your rhythms and your rhymes.

Thank you for respecting the responsibility of fame.  Please don’t let the industry change you.

I can only begin to imagine how proud your mums are of both of you.

With lots of love and thanks,

Mumtoteens

PS What is a Pantaloon?

Twenty One Pilots drummer Josh

Twenty One Pilots - Tyler and Josh

Twenty One Pilots – Tyler and Josh

Tyler from Twenty One Pilots at his piano at the Haunt Brighton

Tyler from Twenty One Pilots at his piano at the Haunt Brighton

Sea of teenagers hands in the air at Twenty One Pilots gig

Sea of teenagers hands in the air at Twenty One Pilots gig

My photographs – all the photographs  featured in this blog belong to me, I took them, they’re mine, so please don’t just lift them. If you want to use them please give me credit (mumtoteens) and a link back to this blog. If you reuse my pix without credit you will be asked to remove them.


#ifIgrowup

When I was 8 years old I told my teacher I wanted to be a writer, not just any writer but the new Enid Blyton. Aged 12 I told my teachers I wanted to be a journalist. Having not changed my mind in the intervening years at 16 years old I told my careers teacher I still wanted to be a journalist.

He said: “Don’t be daft you’ll never do that, it’s not what you know it’s who you know. Journalism’s not for the likes of us.”

Just a few months later I left school at 16 and became a secretary. I spent a few years temping and travelling before I got pregnant with teenboy.

Aged 22 and pregnant I found a new journalism course starting in a couple of months. I applied, wrote an essay, sat the tests, aced the interviews and was accepted.

I then had to come clean and tell them I was 5 months pregnant and couldn’t start the course in a month. One of the lecturers said: “I wondered if you might be pregnant cos when we were interviewing you your stomach kept moving. But you can’t ask, can you?”

I started chasing my childhood dream the following year.

Once qualified I broke stories that changed people’s lives, changed laws, exposed scandals, lies and frauds as well as told the stories of the good people so often do. I loved every second of it, going back to work when Teengirl was just a few weeks old.

It all ended, however, when Teengirl suffered a brain haemorrhage at 9 months old and wasn’t expected to survive and I ran out words.

But I never ran out dreams…

Teenboy

As a little boy teenboy wanted to be a pilot, a train driver, a lorry driver. He was obsessed with all forms of transport. Unfortunately he still is as any of you who’ve read this blog know!

Now at 22 his dream is and has been for a few years to be a film maker and editor. Film-editing being his preferred profession.

Thankfully because we live in the UK teenboy got into Uni three years ago and graduated in summer 2015 with a 2:1 degree in Film and TV Production. Currently he’s got three jobs: working in a bar, teaching filmmaking and occasionally filming and editing for a start-up YouTube channel.

But he’s not finished there; he still has plans, big plans. And I think, given a few years, he’ll fulfil them.

Teengirl

When my princess tomboy was a little girl she wanted to be a vet during the week and an artist at the weekend.

At 17 those dreams have evolved slightly. Right now she’s studying for a BTEC in computer game design and already has a GCSE in this.

She’s not sure if she wants to study this at Uni, she quite fancies trying her hand at photo journalism or perhaps fine art or maybe political journalism or creative writing. But then again she might not even go to Uni and train as a tattoo artist or a scuba diving instructor. Who knows! She has so many opportunities at her feet it’s hard to decide. But she’s just 17 she shouldn’t know what she wants to do for sure yet. She’s still got plenty of time for dreaming.

Babyboy

Right now he wants to be an alien! And a lot of the time he wants to be a Lego builder or designer. Big impossible dreams you may say. I say the bigger more imaginative the dream the better. And while he’s reaching for the moon he might just hit a star.

What’s amazing for my children is that the world is their oyster and they know it. They can do whatever they want as long as they can dream.

#ifIgrowup

#ifIgrowup - donate and give a child a chance to dream

#ifIgrowup

International children’s charity the Railway Children help vulnerable children who live alone and are at risk on the streets at home in the UK and abroad. It urgently needs to expand its work in East Africa where thousands of street-connected children are at risk of violence, abuse, exploitation and prostitution.

For 7-year-old Joseph who lives alone on the streets of Nairobi in Kenya every day is a matter of life and death. He doesn’t know what he’ll when he grows up. He doesn’t know if he’ll grow up. He has no need for dreams.

The Railway Children are fighting to save children like Joseph to give them a future. Once these children are safe and well-cared for and back in school, they do have dreams and ambitions, just like any other child.

You can help these children by donating to the #ifIgrowup appeal at www.ifigrowup.org.uk where until 22 January 2016, all donations to Railway Children’s If I grow Up campaign will be doubled by the UK government, helping them reach twice as many children. Proceeds from the appeal will fund Railway Children’s vital work in the UK and abroad; match-funding from the UK government will fund work in East Africa.


The Power of Likes on My Sense of Self

As I eat my breakfast in the morning I give Facebook a cursory read, then I don’t check it again until after dinner. I don’t care who likes or shares a post or picture, I use it to keep up with faraway friends and family.  I post pictures on Instagram and forget about them. I’m not in it for the likes but for the filters that make the photographs of an amateur look great.

In a bid to get under the skin of our teenage girls I’ve spent today immersed in the world of social media. And ith as been hard!

I’ve spent a lot of the day responding to the beeps of my phone calling me. I expected texts and emails but instead I found Facebook posts, comments and likes, as well as Twitter reposts and favourites. These constant interruptions are an annoyance, but not as much of an annoyance as discovering I’d not got nearly as many likes or reposts as I’d have liked!

Out of 400 FB friends only 5 of them could be bothered to like my carefully structured, taken and posted selfie.

At one point I looked at the clock and it was 11.40am. I’d done nothing for almost four hours but faff about on Facebook, witter nonsense on Twitter and strive to take the perfect pic for Instagram that I could then repost on both Facebook and Twitter.

While WhatsApp pings pierced the quiet far too often – I don’t care if you’re drinking coffee in a hipster café in London just like my pic!!

“19% of girls aged between 13-23 say they have kept checking their account for likes, as a result of not getting enough likes for a photo.” Dove Self-Esteem Project (DSEP)

I’ve realised I don’t like these popping up pings. They drive me nuts and make me anxious as I wait for the next one. They invade my real life forcing me to stop in the middle of writing an important letter, pause the news, put down my coffee and pick up my phone because I cannot ignore the call of the ping.

I know now why I keep my notifications turned off – I like to be in control of when I see who has posted or responded online.

“The average girl takes 9 photos before putting one picture online and 69% of girls with low body confidence avoid posting photos of themselves if they don’t like how they look.” DSEP

When I’m not at work I don’t wear make-up but today to keep up with the picture ready teens I invested half an hour of my precious at home time making up my face and doing my hair. After all that work I spent God knows how long finding the best place in the living room to get the best light for my selfie shots. Turns out in front of the window with the sun streaming in on me was just right.

“The average UK girl receives 24 likes on a photo. In fact, they would prefer 5 times this number to feel validated.” DSEP

I posted a couple of these pictures on Instagram this morning, so far they’ve got only four and three likes and it’s 3.45 in the afternoon.

I put five selfies on Facebook at around the same time with the hope that I’d at least get 24 likes. I watched the notifications desperately all day. In an hour they’d got between 3-5 likes each. By lunchtime I was feeling quite inadequate as the likes grew to a mere six apiece with the same people liking every photograph.

What’s wrong with my pictures? Why don’t more people like them? Why is it always the same people who like them?

By 4pm this afternoon I remained disheartened. My selfies hadn’t managed to get anywhere near the 24 likes I wanted: one got seven, another nine, and one managed 11, with the other two receiving just 14 and 20 likes respectively. And all of them managed to raise just one slightly different comment on each one but from the same mad auntie who comments on everything I put on online.

I feel quite despondent this evening. One comment? Nine likes? What did I do wrong? Why don’t people like my selfies? What is wrong with me?

I’d no idea how the power of likes could impact upon my sense of self.

50% of girls say they are using social networks ‘all the time’.” DSEP

I’m a grown woman, nearly a middle-aged woman who should know better but those likes are like a drug dragging me in, feeding the feelings of inadequacies we all have, amplifying them and negatively changing how I see myself.

If I’d got 50 likes today I know I’d be feeling something akin to euphoria tonight. As it was my rather low likes dropped a black cloud of despondency over my head making me feel old and inadequate, making me consider how I view myself – am I actually looking as good as I think I am?

This exercise has left me with more questions (about myself) than answers. But the one answer it has given me is that is hard to be a teenage girl in a world where social media rules everything. When I was at school all I had to deal with were the ‘mean girls’ but I left them behind as soon as I went home.

Nowadays girls are always switched onto the contrariness of the likes and comments of other teenagers. It cannot be good for their self-esteem or their mental health. It definitely wasn’t good for mine.

“24% of 13-23 year olds have said they would rather receive 50 likes than a hug.” DSEP

The #NoLikesNeeded campaign was launched by Dove at the Women in the World Summit in London on 8 and 9 October to encourage girls to realise the only like that counts is their own.

The Dove Self-Esteem Project is the global sponsor of Women in the World and the exclusive sponsor of the new girl-focused platform ‘Generation Girl’.

Together their ambition is to help inspire and encourage young women and girls to recognise their potential, pursue excellence and be undeniable by showcasing real role models for real girls.

Dove

Parents, teachers, mentors, etc., can download educational tools carefully prepared by the Dove Self Esteem Project. The tools are designed to help boost self-esteem and increase body confidence in young people. You can download yours at www.selfesteem.dove.com

Here are some quick tips from Dove on how to talk to your daughter about navigating social media and the negative feelings it may bring:

  • Talk about how easy it is to become ‘addicted’ to checking for updates on likes and how things can change.
  • Have a conversation about the reality of people’s lives compared to what’s posted online. Explore the difference between ‘edited highlights’ and real day to day life.
  • Do other people in the family spend a lot of time online and on digital devices? It might be helpful to include them in these discussions.
  • Create a home social media agreement that all family members sign.

#NoLikesNeeded

Disclaimer – This is a “sponsored post”. The company who sponsored it compensated me via cash payment, gift or something else of value to write it. Regardless, I only write about products or services I believe my readers will be interested in.


Fighting with the NHS for Tests

More than seven months after a consultant told teengirl she was hypermobile and had Ehlers-Danlos Syndrome we finally got back to see him.

I had my notepad filled with questions but he refused to answer any of them because it was only a ‘ten minute appointment’ and he didn’t have time.

In fact he would not allow me to tell him about teengirl’s chest pains because there wasn’t ‘enough time’ to discuss it.

So I made the quick decision to get as much out of him in the short space of time we had and pushed for:

  • a referal to a geneticist
  • a brain scan

“Why do you need to see a geneticist when there is no cure for EDS vascular or otherwise?” teengirl’s paediatric consultant asked.

Horrified but not surprised I told him that if teengirl has vascular Ehlers Danlos Syndrome it could kill her. And as she’s already suffered a brain haemorrhage it’s looking likely that it’s vEDS. Adding: “I’d like to know so I can advise teengirl on how best to look after herself to hopefully prolong her life and we’d like more information on how to manage her condition if it is vEDS again to help us prolong her life.

The backwards and forwards of this went on for at least 8 of our precious ten minutes until I finally got him to very reluctantly agree to refer her.

Then we moved on to what may be epilepsy or mini strokes: episodes of absence, uncontrollable sudden shaking hand and tapping fingers that can last more than two hours.

He grilled us and I mean grilled us on these. At one point he demanded to know why I hadn’t seen many of them. I had to restrain myself and force a normal tone into my voice when I said: “Because I’m at work until late and teengirl’s studying for GCSE’s so we don’t spend that much time together.”

He then made teengirl feel stupid when he asked about the most recent shaking/tapping episode. Teengirl said the last one had only been short as it just lasted about 20 minutes.

He looked at her and with scorn in his voice said: “Twenty minutes is not a short time.”

But he did refer her. Just two days after we saw him teengirl got a referral to Young Epilepsy for a sleeping EEG and we’ve just had confirmation she’ll get a brain MRI soon as well as a referral to a geneticist for a ‘discussion’.

When we left the consulting room teengirl burst into tears. She had no idea it would be this hard to get help, advice and referrals. She went in there that day expecting help to be readily available, to be offered even. And instead she had to watch me go into battle for her.

Through all this past year teengirl has been a rock. She has coped with every little thing that this chronic illness has thrown at her without tears. Every day she stoically faces the fear that she may have a disorder that might kill her sooner rather than later and every day she wakes up in pain and remembers that she has a debilitating chronic illness that means constant pain for the rest of her life, a walking stick already and perhaps a wheelchair in her very near future.

Every single day teengirl faces and meets each new challenge that EDS brings her but that day in that consultant’s room he belittled her, he made her feel like she wasn’t important and he made her feel worthless. He made her cry. And he had no right to do that when she is going through enough already.

My child has an incurable and invisible genetic disorder through no fault of hers. She will be in pain for the rest of her life. Why do we have to fight to get help?

I feel like I’ve spent teengirl’s whole life fighting with doctor’s about and for her health. It should be easier than this. I know it’s never going to be simple but I would like not to have to get dressed in my battle gear before we visit any doctor, to not have to steel myself in readiness for the fight. I would like to just be able to have the expectation that what she needs will be made available to her to help her live her life to its fullest.

I’m not under any illusions I know teengirl is just a number, a figure on a budget sheet and a body to be poked, prodded and pushed back out the door.

But what they forget is that she is my child and I will not give up. So don’t bother wasting our precious consultation time arguing with me. 

Please just listen to me and my child. 


FYI – vEDS is a genetic condition caused by an alteration or mutation in gene COL3A1. When this gene is altered it causes a lack or deficiently of collagen type III. This leads to less effective connective tissue particularly in blood vessels, hollow organs and the skin.

People with vEDS have fragile blood vessels, this can lead to major complications including rupture of blood vessels. There is also a risk of damage to hollow organs, such as bowel perforation or uterine rupture. Fragile blood vessels also mean people with vEDS bruise very easily. Thin skin makes blood vessels visible on the upper chest and legs. Occasionally people with vEDS will also have hypermobility of the small joints and wounds will likely take longer to heal, etc,.

 

Since I wrote this blog (and didn’t post it) teengirl has had a sleep EEG but her MRI was cancelled on the morning of her appointment. Because she’s had brain surgery the radiographer wanted to check her medical records to ensure no metal had been put in. Two months and several phone calls later we’re still waiting for that MRI appointment to be rescheduled.

We do, however, have our first appointment at the Connective Tissue Disorder Clinic at Guys and St Thomas in London in September. Where I hope we’ll see a geneticist and hopefully move closer towards genetic testing.

Here are a few previous posts on teengirl’s journey:

The brain haemorrhage

The Jigsaw Puzzle

The Final Puzzle Piece

For more information on this rare genetic condition please visit Ehlers-Danlos Support UK


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