Tuesday, 7 April 2020

Sunshine on a Cloudy Day - Peeps Charity

On April 4 North West England based charity Peeps  celebrated it's 2nd HIE Awareness Day. I asked founder Sarah for a press release to do a blog post, and she humbly said due to Corvid19 the day would be a quiet one.

I wanted to do a post anyway, however was struggling to time it, so thought what better day than #charitytuesday.

This beautiful little lady is Heidi. Heidi had her birth interrupted by HIE with long term consequences. Heidi communicates with smiles, and facial expressions, which her parents are highly tuned into. Heidi has medically complex needs, and her parents have become nurses, doctors and advocates. One of the wonderful parts of her story is her close relationship with her school transport taxi driver.

You can find out more about HIE (Hypoxic Ischaemic Encephalopathy here on the Peeps website.

When I was born I too lost oxygen, I never received a diagnosis myself but it's likely that I had grade 1. I know that I was put into a humidy crib at birth, and received oxygen treatment. No record of my birth exist now.

I have had mild coordination difficulties and some executive function issues all my life, although I have always worked around them.

Peeps exists to support all families who have experienced HIE regardless of the severity.

Heidi loves yellow and wearing her collection of Sunshine pants, she adores her new puppy who will be training as a support dog. She loves to laugh.

Heidi would love you to support her here with a donation, because Heidi would like to make sure other families do not feel alone.


Sunday, 5 April 2020

Blessed are the Key Workers #COVID19



Blessed are the Key Workers. I can't say that I have crowds or that I am in anyway like Jesus, although I am but that's a discussion for another day, I wanted to write a post that explained what Key Workers are, who they are and what they do.

I don't know about you, but when Prime Minister Boris Johnson addressed the nation on Tuesday 18th March  and said schools were to close on Friday 21st March I had a very limited view on what a  Key Worker was. I thought it was nurses and doctors, you know front line NHS staff, and truly blessed are to have them.

Slowly through social media, I learnt that a Key Worker actually included people I hadn't thought of. Like me. And that children of Key Workers could, in theory still attend school. I made the decision early on that we would make do. I felt that we could manage without school and it was important to decrease the burden on our schools at this time.

You see a Key Worker isn't someone who just directly saves lives, it is anyone who supports the NHS to keep operating safely. When you start extrapolating what that looks like it means vast swathes of the workforce are indeed Key Workers . Blessed are the Key Workers.

So with thanks to Matthew chapter 5 verses 1 through 12 I give you the modern take on the Beatitudes. The Beatitudes for the Corona Crisis

The Corona Crisis Beatitudes for a Modern Global Pandemic

Blessed are our Frontline NHS and Allied Health Professionals. From the anaesthetists, surgeons, nurses, to the scientific researchers, the porters security staff and cleaners. All of whom are one body, working to save those who are afflicted with this terrible virus, for theirs is the kingdom of heaven.

Blessed are those who work in Education and Childcare The teachers and teaching assistants, nursery staff and social workers, all school staff such as cleaners, caretakers, pupil escorts (me), dinner ladies (also me), pastoral care teams and all those who I haven't mentioned who keep our schools and our precious children safe and educated. And provide a safe place so group one can continue doing the work, for they will be comforted. And blessed with two weeks off at Easter (it is Palm Sunday today)

Blessed are our Key Public Services Included in this list are funeral directors and all involved in "managing the deceased", all religious staff, and journalists (all of them, sorry even Piers Morgan for whom I have new found respect, for they shall inherit the earth.

Blessed are our Local and National Government This includes all administrative occupations essential to the effective delivery of the Covid 19 response or delivering essential public services, including the payment of benefits for they shall be filled. Politicians don't get a mention in this description.

Blessed are our Food and Other Necessary Goods workers, all those who are involved in the production and sale of food, including delivery drivers, supermarket staff, and all those making coffee, especially them, for they will be shown mercy.

Blessed are those who Work in Public Safety and National Security My heart is particularly with the Police who at this time are enforcing socially distancing measures, basically arresting numptes and bellends who think that its ok to sun themselves in groups on beaches and parks, endangering the lives of the vulnerable. Included also are prison staff, and are Defence staff and all those in supporting capacities, for they will see God.

Blessed are those who Work in Transport those who will keep air, water, road and tail passenger and freight transport modes operating during the Covid 19 response, for they will be called sons of God.

Blessed are the Utilities, Communication and Financial Services staff who are required to keep all our utilities and communications systems operating. Some of these people are working very fast to build systems that don't exist as yet, thinking of our field hospitals who need a vast array of these sort of functions in order to safely operate. Those who work in postal services and banking for theirs is the kingdom of heaven. And a reminder that you can't take it with you, so if you are working in these fields and blessed with large amounts of money, be kind and spread your resources.

The Beatitudes go on to say this "blessed are you when people insult you, persecute you and falsely say all kinds of evil against you because of me. Rejoice and be glad because great is your reward in heaven and for the same way they persecuted the prophets who were before you."

So this Palm Sunday let us tweet #BlessedaretheKeyWorkers and support them in their work. Make their days easier, and do the right thing.

#StaySafe #StayHomeSaveLives








Saturday, 4 April 2020

COVID19 and the Neonatal Unit

Hello readers!

Welcome back to my blog. Today I was planning on doing a post about the wonderful Peeps Charity as it's HIE Awareness Day today, a day that this charity set up just last year,

When I explained I would have to delay the post Sarah explained that they had kept the day low profile due to other issues more pressing at the moment.

Which brings me to the point of this post. Many of us across the health activist community are concerned about the breadth of the new guidelines across many health sectors, granting the government new unprecedented and untested powers.

Clearly we are in an unprecedented fast moving situation. I share the petition the other day requesting the clarity on the birth partner issue.

I took for granted what I was really asking for, and hence my concern is this. The guidelines  issued by the Royal Council of Obstetricians and Gynaecologists is completely silent on NICU visiting and the Covoid19 crisis we find ourselves in.

Now a straight forward answer is that only mum and dad should be allowed to visit. However we all know that families have a myriad of permutations. My prime concern here is maternal mental health.

I have been diagnosed with complex post traumatic stress disorder. Due to my childhood trauma I was more susceptible to this condition. However one of the risk factors for PTSD is lack of connection. We know that units cannot always accommodate parents to stay on the unit, so this means travelling often large distances.

I have looked at the Bliss statement on this issue which can be found here but again, there is lack of clarity.

I do appreciate this is a fast moving situation and a lot is unknown about the risks to newborns and pregnant women in the light of this virus.

However we do know a lot about maternal mental health and NICU stays .

I think it's essential that the key charities and campaigners in this field create a rigid and clear guidance that advises exactly what units can and can't enforce and most of all offers consistency. Practice can vary from one unit to another.

I am viewing this issue purely at a distance. However my concerns remain that the maternal mental health of mothers has been overlooked in this guidance.

Please tweet your concerns using the hash tag #Covoid19birth 

Tuesday, 31 March 2020

Walking a Marathon or Four for Adam

Many years ago I met Charlotte through Group B Strep Support  and wanted to help raise the profile of her blog Walking for Adam. Charlotte was and is passionate about raising awareness of Group B Strep to prevent other families from walking in Adam's shoes. You can read more about Adam's story on Charlotte's blog.

As you will discover, life for Adam has been turned upside down, as Charlotte's beloved husband has been diagnosed with a swift and aggressive form of cancer, and now due to that evil virus has now been isolated for 12 weeks at least.

I have wondered how to help Charlotte practically, and was, during Easter time, going to go and see if I could help her. Now of course that is impossible.

So when I discovered Group B Strep Support had launched Marathon in a Month I thought it was ideal and would really stretch me to make sure I got those miles in . Well now the game has changed.

With the current restrictions I am allowed one health walk a day then a trip to do an errand. Not being able to drive means I walk every where. I achieved the marathon last week alone. So I am going to endeavour to do 4, a marathon a week. Plus at least one of these will be walked by Joseph.

You can give here

I have met with the CEO over the phone and in person and I have every confidence every penny will be well spent to ensure this condition is prevented through education and whilst they fight for routine testing for every pregnancy.

Thank you in advance for you support 

Monday, 30 March 2020

Matt Hancock: Please Don't Force Me to Give Birth Alone

Oh dear readers it has been such a long time. And do not panic I am not pregnant again, heaven forbid!  But Matt Hancock Please Don't Force Me to Give Birth Alone.

I am awake at this time because I have an important petition to share from Emma Payne via Change.Org

This virus, and I will not speak it's name here, as I believe it is from the devil itself, is causing much trouble and strife, we are all locked down in our houses for very good reason, to prevent the spread of this virus to our most vulnerable. Matt Hancock Please Don't Force Me to Give Birth Alone.

I am just a mother, a lay person but I cannot imagine the impact this will have on all mothers, but particularly those having babies prematurely.

I cannot imagine, at just 27 week as I was, giving birth without my beautiful husband with me. He is not perfect (in fact he just came down and shouted at me this very moment for writing a blog rather than sleeping!) I have slept I just woke with a conviction deep in my heart that this needs to be shared and shared now. Matt Hancock Please Don't Force Me to Give Birth Alone

If there is evidence that such a draconian measure is required I call on Matt Hancock to explain this to Emma and myself.

What are other countries doing? In the mean time please sign and share this petition far and wide.

I will be blogging throughout the #viruscrisis to ensure that the voices of parents and their unborn babies are heard.

I trust that you will read and share and help others understand what is happening and to work together to ensure all is done in the best interests of everyone not just knee jerk reactions.

Love always

Kylie

Not Even a Bag of Sugar 

Monday, 24 July 2017

Goodbye Chester

When I first disclosed my abuse in 2012 I discovered, late in the day I have to admit, Linkin Park. Now I love music, and I've blogged about music before, but my usual go to pieces didn't cut it. I was raw, I was angry, and I needed music to say the things I couldn't say.

My ears would bleed listening to "Numb" as loud as I could. Chester Bennington's voice could go from sounding like an innocent, angelic child to a roaring beast within 20 seconds, and that's how I felt. The rage in my heart was so strong, it was terrifying, and Linkin Park gave that voice an outlet.

This weekend I walked along the beach listening to song after song. And I waited for that moment, the finding of peace, the song that voiced a turning point. But no, every song is filled with torment, with disappointment, with impending doom.

I am not a follower of celebrity and I had no idea that Chester was abused as a child. I have seen articles describe Chester's life as a classic study of child sexual abuse. 

I rally against this. Chester's life was his own. He made it count, and how. Filling stadiums, selling countless albums, giving the voiceless a voice. I don't know why Chester decided his life was to come to an end. No one does. No one knows if it's as a direct result of the abuse he suffered as a child.

How is my life different to Chester's? How am I different? Is there any point keeping on going with the daily struggle of dealing with the shit left behind by my own childhood experiences. As the evil voice that plagues me from time to time has said over and over this weekend "you should be dead, you can't beat this, if Chester couldn't then you are doomed".

That powerful voice has no place in my head. I've drowned it with music all my life and this weekend was no different.

There is inexplicable joy in my life from so many sources, my family, my beautiful son, from the things around me, the things I create, the love that surrounds me. Yes at times I feel numb, I feel like in the end it doesn't really matter. I long, as Chester sung, for somewhere I belong.

Sometimes I still feel like an outsider, or a little child. But you know what, we all do, regardless of our histories.

Life is a valuable thing, but I can understand when someone decides that they can't do this anymore. Success, family, love, adoration, nothing can save them.

I feel desperately saved that in the end, he couldn't be saved, and can only hope that he has found peace, comfort and somewhere to belong.

And maybe that's the difference. In the end, after all I've done, I don't believe the answer is to erase myself. I believe the love of my family, my friends, of all those who have touched me in my life, is enough. I face this every day, gaining a deeper understanding of myself, a greater self compassion.

I'll miss you Chester. You will never know how much your lyrics and performances meant to me. I am sorry that it wasn't enough. That we weren't enough.

Go in peace, let mercy flow.

Because in the end, you matter. We all do. 

Friday, 10 March 2017

The Distracted Parent

I have recently finished reading Eating the Elephant  by Alice Wells. I approached this book with trepidation, her story is disturbing and compelling, and beautifully written and constructed, which helps enormously to digest the content.  Her journey of discovering the vile world her husband assisted to perpetuate, using his own very small daughter to do so, is unspeakably horrific. He died before she was able to confront him.

Slowly it unfolds that he took hundreds of photos of his daughter and subjected her to abuse, very similar to my own experiences, although I hasten to add I was not abused by a family member.  I found the story of her daughter to be so comforting and helped me understand myself as a child that little bit better.

Alice, in the book, and in an interview I saw with her, describes her life before the death of her husband, that she was permanently distracted. We learn in mindfulness class that autopilot and distraction are the enemies to fully living, to fully live we must be fully present, and the same in parenting. To truly parent you must be present.

Modern life is hard, together with the regular pressures of feeding your child and keeping a roof over their head are so many demands. Holidays, toys, experiences, education all this stuff requires paying for. We need to work. We want jobs that are meaningful, that use our skills and capabilities. We need to be out of the house very often in order to do this, perhaps we have long commutes. We may have older relatives that need our time too, friendships that need nurturing and in all this we need our own play time and releases too.

Distraction is where potential child sexual abusers (PSAs) can flourish. Allow me to take a step back at this point.

When I first entered therapy for child sexual abuse in 2012 at the age of 40 one of the sessions was around why I was chosen to be abused. I felt sick at the thought. I genuinely thought that we were going to look at me, and what was it about me that made him want to abuse me.

A PSA requires two things to be successful. Firstly they require the desire to abuse a child. That desire pre exists, which is important to remember. It is nothing about the child, a normal person doesn’t see a child and suddenly have the desire to abuse, their desire is there already. It is never the child’s fault.

Secondly, that PSA requires access. The child needs to be accessible to abuse. Being a distracted parent gives a PSA potential access to the child.

What we need to consider here is what is being present? Being present is not the same as being there. You can be next to your child and not be present. Being present covers many bases. Do you know who your child’s friends are? Do you know their parents? Do you understand your child’s normal patterns? Do you understand the games that they play, the apps they use? Do you take a genuine interest in what they do? Would you recognise a change in behaviour? Would you know how to respond?

Being present also means being approachable. There is a sickening scene in Eating the Elephant where Alice recalls her daughter disclosing, prior to the death of her father and the subsequent discoveries, and Alice inadvertently shuts her down. She is repulsed by what Alice says, and changes the subject. At no time did she consider that Alice might have first hand experience of what she mentioned. I don’t blame Alice and there is a discussion in the book about how this came to be, that Alice, a trained doctor, missed a key disclosure.

A present parent is a paedophile’s worst nightmare and your best defence. You cannot wrap your child up and protect them from evil. You don’t teach your child the statistics about car travel. You don’t make them feel fearful every time they step into a car that they could be in an accident, that there are drunk and drugged drivers on the roads, people without licences, over tired truck drivers, busy motorways, boy racers, the list goes on.

Which brings me to the internet. Our children are growing up in a digital world. It is essential that you understand this world. I saw an article the other day about a parent horrified about Roblox and their child receiving messages. Joseph plays Roblox, however he does not have an account, he has to play as a guest, and even then Roblox has some issues. One day I was horrified to see Joseph making a hockey mask and talking about Jason. I had to Google to find out what this was all about, I had never watched a horror movie, and still haven’t, and it took some time to unravel all this from Joseph’s mind.

It’s easy to become distracted and lose track of your child in an online wormhole. As children get older and learn to cover their tracks it’s even harder to keep an eye on what they are doing and who they are talking to.

On Facebook many of my friends shared this video made by Leicestershire Police about Kayleigh, a true and highly distressing story.

What this brought to my mind is what if she had spoken to her parents. Are parents equipped to have a conversation about concerns regarding online behaviour. I’m not sure I would have known what to say if Kayleigh had come to me and told me she had met a boy online. I like to think I would have been open, encouraged discussion, and engaged with her over it. Or maybe I would have completely lost my shit and forced Kayleigh deeper into the arms of this monster. I don’t know.

To ride safely in a car you need the right seats, the correct seatbelts, you need a car in good working order. You need knowledge, about yourself, your own capabilities, your vehicle, the roads around you and an awareness of other road users. Not just other vehicles but pedestrians, animals, wildlife, changing road conditions etc.

So too with the internet. Driving can be highly pleasurable, as can internet usage. I love the internet and it has enriched my life in many ways. But I am an adult, even so I have made mistakes online, and no doubt Joseph will make more along the way. But by being present and connected I can help him make sense of the digital world, and he can help me make sense of his world too.

Being fearful of PSAs is the worst thing you can do. Fear can lead to distraction. Being knowledgeable, confident and present is the best thing you can do to protect your child from harm.

To be able to tackle an elephant you first need to know that it is there.