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January 10, 2017 / Living Life Our Way

Thank you for subscribing!

Hi all, 

I seem to have gathered quite a few subscribers lately, which is lovely, thank you. Unfortunately this is my very old blog that I no longer use, I am guessing one of my blog comment logins currently directs people here, so I need to figure out which one that is and how to redirect it, apologies for that! BUT the great news is that you can find me over on my latest blog at livinglifeourway.com instead! 

You can also find me on the following social media channels:

Facebook: livinglifeourwayblog

Twitter: @followourpath

Instagram: living_life.our_way

Thanks again for following me here and I hope to see you over at my blog soon! 

Katie xx

May 25, 2014 / Living Life Our Way

Special Diets: Gluten-Free, Vegan, Coconut Sugar Sponge Cakes (Low GI)

We made some fairy cakes for my daughter to decorate as part of her birthday celebrations today, they turned out so well I decided to share the recipe…

2014-05-24 23.55.40

INGREDIENTS

  • 150g dairy-free spread (we use Pure Sunflower)
  • 150g coconut sugar
  • 150g gluten-free self-raising flour (we use Dove Farm)
  • 3 teaspoons Orgran No Egg mixed with 6 tablespoons water
  • A few drops of vanilla extract

 

METHOD

Mix the spread and sugar together until light and fluffy.

Add the remaining ingredients and mix thoroughly.
Spoon the mixture evenly between cupcake holders in a baking tray (makes approx 12 fairy cakes).

Bake at 180C/170C Fan/350F/Gas Mark 4 for about 20 minutes, or until golden brown and firm to touch.

2014-05-25 13.39.44

Vegan (and low GI) buttercream frosting was made by mixing:

  • 50g dairy free spread (we use Pure sunflower)
  • 100g coconut sugar
  • A few drops of vanilla extract
  • 1-2 tablespoons of boiled water
  • Natural colouring of choice

2014-05-25 13.37.19

January 20, 2014 / Living Life Our Way

10 Signs a Child Might Have PDA (Pathological Demand Avoidance)

A child *might* have PDA if:

  1. They are a contradiction to themselves. On the one hand they do well with a spontaneous approach because then they don’t have time to worry or build rigid expectations but at the same time they create their own routines and rituals that can be extremely rigid. They need familiarity and predictability yet at the same time changing things up constantly is the only thing that actually helps. It becomes a constant mission to find the elusive balance.
  2. Every single ‘typical’ parenting technique suggested, including those for autism, have no effect or just makes things worse.
  3. Their favourite phrase is “I can’t because I need the toilet/am hungry/too tired/have a tummy ache/am busy doing this”. In response to EVERY request.
  4. After breakfast you ask them to get ready and they respond by insisting they are (suddenly) VERY hungry. If you gently suggest they dress first they scream and accuse you of starving them unless you let them eat RIGHT NOW.
  5. They ask you to play, then tell you every specific detail of *how* you should play. Within 5 minutes they are frustrated because you are not doing it all EXACTLY right.
  6. You ask them to help tidy up and they respond by saying they will in a minute but they are in the middle of a game. You repeat the request and they respond with something like “but the show is about to start then they need to hurry back because they are having a party at home. I promised I would help them. I will do it after that.” All direct instructions are met with an equally as elaborate excuse why not.
  7. You say it’s time to clean teeth. They say ok but don’t move from where they are sitting. You ask them to come to the bathroom. They say ok but still don’t move and begin a new game. Repeat at least 20 times.
  8. They give you ‘homework’ to do when you are not with them.
  9. You suggest you need to cut theirs nails because they are very sharp. Their response is “no they aren’t. I don’t even have nails!”
  10. They would make an excellent politician. At the very least you feel they could definitely negotiate with your boss more effectively than you can, despite the fact that they are only 6.
January 18, 2014 / Living Life Our Way

To Train Up A Child: Update

For those who are not already aware, this book actively suggests violence and punishments toward babies and children that constitutes abuse. I have now had a response from MPs about this book, in summary this is the advice given:

Due to the nature of the book, it could be a criminal offence to follow the advice under existing legislation and therefore users could be prosecuted (for example if there is resulting physical injury or psychological harm). If someone suspects a crime has been committed or is likely to be then please notify the police. They can then investigate and refer the case to the Crown Prosecution Service if appropriate.

I think police need to be investigating this matter fully and, if necessary, we need to campaign to ensure this happens. I feel they should be investigating the authors of the book and the distributors, including Amazon, as surely they are contributors in the crimes being committed?

Please also consider writing a complaint to Amazon directly and continue to gather signatures on the following petitions to stop sales of this book:

Amazon.com: Ban ‘To Train Up A Child’ book that encourages child abuse http://www.change.org/petitions/amazon-com-ban-to-train-up-a-child-a-book-that-encourages-child-abuse

Amazon: Remove from both print and Kindle sale ‘To Train Up a Child: Turning the hearts of the fathers to the children’ http://www.change.org/en-GB/petitions/amazon-remove-from-both-print-and-kindle-sale-to-train-up-a-child-turning-the-hearts-of-the-fathers-to-the-children

Amazon.com: Remove the book “To Train Up a Child” by Michael and Debi Pearl http://www.change.org/petitions/amazon-com-remove-the-book-to-train-up-a-child-by-michael-and-debi-pearl?

Amazon: Refuse to carry books which advocate the physical abuse of children. https://www.change.org/petitions/amazon-refuse-to-carry-books-which-advocate-the-physical-abuse-of-children

For more information on Amazon’s (disappointing) current stance on this issue please see here:

http://adadcalledspen.wordpress.com/2014/01/04/my-letter-to-amazon-about-to-train-up-a-child-and-their-utterly-disappointing-response/

Please help to seek justice for those children who have already suffered at the hands of this book and let us prevent anymore tragedies from occuring. Thank you.

November 25, 2013 / Living Life Our Way

To Cane Up a Child – Amazon you disgust me….

I can barely even stand to think about this book let alone post about it but for the sake of awareness here it is.

mentallyjaded

notobook

So for those of you that are new to this disgrace, Amazon and a few other retailers were/are selling a parenting book called ‘To Train Up a Child: Turning the hearts of the fathers to the children’ by Michael Pearl. In a nutshell, this book advocates the use of a switch (stick or cane), belt or flexible plumbing hose to ‘parent’ your child.

Understandably, many retailers have been mortified to discover this book for sale on their shelves. Wesley Owens, the Christian book seller even went so far as to apologise when a customer email brought the matter to their attention;

“This is not a book we would ever stock or would ever want to stock, and I can only apologise that it has been mistakenly listed on our website. We will deal with this as soon as we can.

Once again, thank you for brining this to our attention…

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November 17, 2013 / Living Life Our Way

New study finds that individuals with Asperger’s Syndrome don’t lack empathy – in fact if anything they empathize too much

This makes so much sense and matches our own experience.

Seventh Voice

“A ground-breaking theory suggests people with autism-spectrum disorders such as Asperger’s do not lack empathy – rather, they feel others’ emotions too intensely to cope.”

“People with Asperger’s syndrome, a high functioning form of autism, are often stereotyped as distant loners or robotic geeks. But what if what looks like coldness to the outside world is a response to being overwhelmed by emotion – an excess of empathy, not a lack of it?

This idea resonates with many people suffering from autism-spectrum disorders and their families. It also jibes with the “intense world” theory, a new way of thinking about the nature of autism.

As posited by Henry and Kamila Markram of the Swiss Federal Institute of Technology in Lausanne, the theory suggests that the fundamental problem in autism-spectrum disorders is not a social deficiency but, rather, a hypersensitivity to experience, which includes an overwhelming fear response.

“I…

View original post 1,047 more words

October 5, 2013 / Living Life Our Way

How it Feels to Live in Holland

My own post is further below and is based on this following piece called ‘Welcome to Holland’

WELCOME TO HOLLAND by Emily Perl Kingsley.

“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”

I love Holland, with all my heart. I had never really held much expectation of what Italy would be like anyway, I was realistic enough to know it depends which part you go to and what you do there, who travels with you and what you personally make of it. Yet slowly discovering I was actually in Holland instead of Italy was still both confusing and isolating. Where were all my friends who I was supposed to be meeting in Italy, they don’t seem to be here? Why is it what they are describing is not what I am experiencing? None of it makes sense!

Some people don’t even notice you are not in Italy and act as if you are. They assume when you describe the lovely windmills that you are clearly mistaken, that your description is inaccurate. It must be, for there are no such things in Italy. Or they wonder if you maybe went the wrong way, ended up in some random unknown part of Italy because you failed to navigate successfully. Was it your fault you ended up at this place?

Sometimes you do get to pop over to Italy for brief periods. You know how lucky you are to be able to take that trip and you embrace the opportunities it presents. However other people see you in Italy and they don’t understand that for you it is just a vacation. The journey you took to get there was difficult, yet they do not realise much effort it takes you compared to those who already live there. They are confused why you seem so tired and distracted sometimes and why you are often so late to arrive.

You start to realise that you have picked up the Dutch language along the way but when you speak to your friends they simply look baffled and respond in Italian. You no longer speak the same language so communication is hard and understanding each other’s very different experiences seems so difficult. A few friends stick around to overcome these barriers but others decide it is too hard work. You feel sad for the many people you have lost but grateful for those friends who make the effort to learn about Holland and who fully accept you now live there, even though it is not what you planned beforehand.

Some people actually make it clear they do not like Holland, they have read some negative stories about it and do not wish to be associated with those living there. The people with that attitude towards somewhere they have never even been is heartbreaking. Others have decided living in Holland is inferior to living in Italy, they do not acknowledge that it is not better or worse, just different. They ridicule Holland and all those who live there. Many people simply haven’t heard of Holland before and do not wish to know about it. They live in Italy, they like it there and are happy with it, they are exactly where they planned to be. They don’t feel the need to learn about other countries they might never visit, even if people they know live there. You wish they would think for a moment about the joys and hardships of living in Holland but unfortunately they will never spare time thinking about it, sadly they only care about Italy.

However there is a wonderful side to living in Holland. You meet other people who also live there, perhaps ones you never would have expected to meet, but they are lovely and welcoming. Some of them come from different parts of Holland and are not really familiar with your area, or you with theirs. Their experience is far more similar to yours than Italy is though and that is reassuring. Even though you didn’t intend to live there and it can be slow-paced yet exhausting all at the same time, Holland does soon begin to feel like home.

Most importantly of all, Holland truly does have many incredibly special and unique qualities. If you take the time to fully appreciate it, you realise that despite the many challenges, it can actually sometimes be an amazing place to live. If only everyone else understood what it is like to live in Holland it could be even better.

September 14, 2013 / Living Life Our Way

What YOU didn’t see when you were busy judging me…

I am sure many of you have seen this by now but for those who haven’t here it goes…

Dear Mom On the iPhone,

I see you over there on the bench, messing on your iPhone. It feels good to relax a little while your kids have fun in the sunshine, doesn’t it? You are doing a great job with your kids, you work hard, you teach them manners, have them do their chores.

But Momma, let me tell you what you don’t see right now…..

Your little girl is spinning round and round, making her dress twirl. She is such a little beauty queen already, the sun shining behind her hair. She keeps glancing your way to see if you are watching her.

You aren’t.

Your little boy keeps shouting, “Mom, MOM watch this!” I see you acknowledge him, barely glancing his way.

He sees that too. His shoulders slump, but only for a moment, as he finds the next cool thing to do.

Now you are pushing your baby in the swing. She loves it! Cooing and smiling with every push. You don’t see her though, do you? Your head is bent, your eyes on your phone as you absently push her swing.

Talk to her. Tell her about the clouds, Mommy. The Creator who made them. Tickle her tummy when she comes near you and enjoy that baby belly laugh that leaves far too quickly.

Put your eyes back on your prize…Your kids.

Show them that they are the priority. Wherever you are, be ALL there. I am not saying it’s not ok to check in on your phone, but it’s a time-sucker: User Beware!

Play time at the park will be over before you know it.

The childhood of your children will be gone before you know it.

They won’t always want to come to the park with you, Mommy. They won’t always spin and twirl to make their new dress swish, they won’t always call out, “WATCH ME!”

There will come a point when they stop trying, stop calling your name, stop bothering to interrupt your phone time.

Because they know…

You’ve shown them, all these moments, that the phone is more important than they are. They see you looking at it at while waiting to pick up brother from school, during playtime, at the dinner table, at bedtime…..

I know that’s not true, Mommy. I know your heart says differently.

But your kids can’t hear your words, Mommy. Your actions are screaming way too loudly.
May our eyes rest upon those we love, first and foremost, and may everything else fall away in the wonderful, noisy, sticky-fingered glory of it all.

(http://4littlefergusons.wordpress.com/2012/11/14/dear-mom-on-the-iphone/)

To the parent who noticed my daughter twirling round in her dress glancing my way to see if I am watching her.

I don’t take any moment for granted. I may be typing on my phone right now but you have no idea why that is. Relaxing you think? Ha, I wish! I am trying to organise care for my elderly relative, he took a fall just yesterday and I am worried he is on his own too long.

When you hear my little one shouting “mum, MUM watch this!”

I barely glance her way, that much is true. But did you see her dad? He was stood right there, enthusiastically telling her that HE can see her, HE is wanting to play. He loves spending time with her but she is so very mummy- focused she barely even notices that he is there. As guilty as I feel for only barely acknowledging her, we feel working on their relationship is a priority so agreed I need to take a step back occasionally. In fact I only came along on the trip so at least she would still have me around in the distance, out of consideration for her feelings. Oh and did you even know this is literally my only bit of ‘respite’ this whole month?

And some more examples…

That moment you saw me speak to my daughter abruptly in the playground, when you gave me a dirty look (did you practise your filthy looks in the mirror?!) and turned to speak to your own child in a gentle (but overly loud and cheerful) way to make your point?

I *am* that gentle parent most of the time but nobody can be patient ALL of the time. You didn’t hear me calmly explain the same thing OVER and OVER to my daughter in as many ways as I could think of to help her understand. I was struggling under the pressure to keep her safe (she doesn’t understand why she must not run into the road), so yes I snapped at her angrily for an instant. Are you perfect? Neither am I. Shame you didn’t stick around long enough to see my bend down to her level, look her in the eye and apologise for my behaviour, just a minute later.

To the lady giving me the angry glare wondering why I am not being stricter for my daughter’s ‘bad behaviour’.

I know you are watching me, wondering why I haven’t dealt with her in an obvious way, perhaps I need to develop a consistent behaviour management technique? The fact is there is an underlying reason for her behaviour, she is expressing her feelings, her difficulties and needs. No, that is not an excuse but punishing her for feeling stressed and confused won’t help her learn, I am supporting her in dealing with it in gentle ways. You don’t see me calmly walking off with her hand in hand, off to a quiet corner and away from prying eyes. We sit together to talk about what just happened and how to resolve the issue. You don’t see her playing happily with other children just a short while later. No, that is not a different child who you notice being so kind to that other child, she is the same child who was kicking and screaming. She is no longer overwhelmed, do you still think her behaviour wasn’t dealt with?

Oh and this is also so very true…

Checking in on Twitter or Facebook allows me to collect myself and maintain a sense of humor about things that might otherwise set me off. It’s kind of the social media immersed mother’s version of a long drag on a cigarette. It helps ground me and gain perspective. The permanent marker covered Evan a few years ago would have been far more upsetting than amusing were it not for the ensuing hilarity in Facebook comments. Having my friends and community a simple click away is a much needed break at the very least, and a near lifesaver at the most.

(Full post can be found at: http://www.scarymommy.com/dear-mom-judging-me/)

Just a little disclaimer at this point. I do realise the true meaning intended behind ‘Dear Mom on the iphone’. Please take the time to read her footnote if you haven’t already. I am simply using that to highlight the fact that judgements can be made so easily, yet you truly cannot begin to know or understand a parent just by witnessing them at any given moment. So next time you judge someone for their actions, just stop and think of the million reasons why they could be acting the way they are.

Less judgement, more understanding.

Do not judge me on what you see,

a snapshot of our life does not mean you know me.

You make assumptions from things we say or do,

but so little of what you think of us is true.

So hush your judgements, keep your wise words,

give us time and space, let your thoughts go unheard.

Support is helpful, if someone needs a hand,

but please don’t judge what you clearly don’t understand.

April 29, 2013 / Living Life Our Way

Understanding and Supporting Sensitive Children

Firstly, it is really important to understand that for some individuals their senses and emotions are turned up high. So noise *is* that loud, the hurt that painful, the incident that serious, the smell so strong, the clothes so uncomfortable, the lights so bright, the taste so horrid or the texture so awful. Their perception of the world is more intense than others. Sensitive children are often sensitive all-round; to food, to environment, sensory processing difficulties, emotions etc… Those around can support by responding patiently and by understanding they are not simply being ‘drama queens’ or ‘attention seeking’. Support the child with learning how to communicate how they feel calmly and how to relax because their feelings and experiences *are* very intense. Sometimes it is also possible to demonstrate how to put things in perspective using clear analogies.

To be proactive in avoiding over-stimulation in the first place, aside from being mindful of their environment generally, perhaps try noise cancelling headphones or ear defenders, sunglasses, calming smells or something comforting to hold. Make a quiet chill-out space available if possible and ensure they can access it freely. Also teach strategies that help to effectively deal with stress, such as simple meditation techniques or even basic CBT self-help skills, because then they will have more tools to help themselves.

Raising Your Sensory Smart Child by Lindsey Biel/ Nancy Peske and The Out of Sync Child Has Fun by Carol Stock Kranowitz are also helpful for getting ideas on how to do Occupational Therapy (OT) type activities at home. Having these available means the opportunity to self- regulate is there. Some parents might choose to suggest these activities at certain times of day or alternatively just explain what the purpose of them is and leave it at that/ just strew them around the house so they look inviting and are accessible at all times.

In addition to the books already named, further recommendations are Raising Your Spirited Child by Mary Sheedy Kurcinka and The Highly Sensitive Child by Elaine Aron.

Useful websites:
http://sensorysmarts.com/
http://www.hsperson.com/pages/child.htm
http://www.parentchildhelp.com/

January 6, 2013 / Living Life Our Way

Saving Neon Roberts- The Importance of asking questions

This post is not an expression of my opinion on the article below, of this case in general or of any other. Indeed it is a terrible situation for anyone to be in and the decisions we arrive at are our own to make. This *is* however, about highlighting the importance of asking questions and seeking out *all* of our options, not just those initially presented to us, so we can be empowered to make INFORMED decisions. We frequently have far more choices in all aspects of our lives than people are led to believe and more options than (it would seem at least) some organisations and the government would like us to even know exist. This is something we need to be mindful of; to question everything, seek knowledge for ourselves and to draw our own conclusions, rather than rely on others to provide us with unbiased, objective information. Because in reality this is not what we receive unless we search it out for ourselves, we rarely get given the complete picture, yet it is what we need to make the right decision for our individual situation.

The importance of asking questions and seeking our own truth goes for so many aspects of parenting; pregnancy and labour choices, vaccines, medical and health care, the way we choose to parent generally and how to educate to name just a few examples. For me, it is not about everyone arriving at the same conclusion or about doing something a particular way. There are no ‘shoulds’ and no definitive right or wrongs (with obvious exceptions that go without saying). There is only a good decision for that individual child, at that time and in that situation. It is therefore important people know and fully understand *all* of their choices, seek the information required about each option *then* make an informed decision, based on *their* unique situation. (It goes without saying that any personal choices made do also consider any implication on others or society in general, if the decision could be likely to significantly affect others. Of course balancing this out is part of the decision making).

Returning to the quoted article below, it does also remind us not to make incorrect assumptions about another person’s decisions. Especially without even taking the time to consider their rationale or understand *why* they have acted, or refused to, in a certain way. Ultimately you may or may not draw the same conclusions about any given subject (and why would you expect to necessarily? No two situations are exactly the same anyway) but it does allow for understanding and acceptance of other people’s choices and differences. For example this parent is far from irresponsible, as some assumed, she simply feels there are other options. It is not our place to judge whether we agree or not with her decision, but understanding her reasons is the difference between dismissing her as irresponsible and opening our eyes to the possibility that there *are* other (possibly better?) solutions. True understanding of another person’s actions or choices does not come from making assumptions, it only comes from asking questions, seeking knowledge and searching for answers. Just because someone has taken a different path doesn’t mean that they are wrong or that they think you are either.

Saving Neon Roberts

What has been lost in the press reportage of Sally Robert’s brave struggle to obtain a better clinical deal for her son Neon is the actual documented severity of the long term effects of radiation to the brain. These include; personality changes, memory loss, problems with brain functions, deafness, necrosis (shrivelling) of the brain tissue, stunted growth and causing the growth of secondary cancers. The side effects intensify if chemotherapy is added to radiotherapy as is proposed for Neon.

Neon had a scan last week and there is no indication of any tumour re growth, however radio therapy is due to begin on Jan 10th. According to Sally’s lawyer with the new evidence in her possession since her research began, she has very strong case for an appeal. Whatever the outcome of the appeal there remain ways to protect Neon from the harsh after effects of radiation . Moreover Sally wants to use her experience and the abundant amount of information she now has to help other families who are in her situation.

It is surely surprising that despite the great wealth of the pharmaceutical industry and the huge amounts raised by the public for cancer research the treatments offered in the UK, surgery, radio therapy and chemotherapy, have not changed since the nineteen forties.

Why for example isn’t hyperthermia a well evidenced approach to cancer treatment including brain tumours, which is used by the prestigious Barnes Jewish Hospital in Washington as a state of the art treatment approach, also offered here? The principal of hyperthermia is that cancer cells are much more sensitive to and intolerant of the effects of excessive heat than normal cells, also tumours have an impaired ability to adapt their blood circulation to the effects of high temperatures thus hyperthermia can cause the reduction of blood flow to the tumour. Hyperthermia also activates the immune system while causing no harm to healthy cells. Hyperthermia is used in Germany both as a single treatment and as conjunctive treatment to both radio and chemotherapy since it enhances their effects while reducing side effects.

Interestingly Doctor Clare Vernon consultant clinical oncologist at the Hammersmith hospital has been quoted in the Lancet (2001) as saying “I think every major cancer treatment centre should have a hyperthermia unit. Hyperthermia is very effective even when other treatments have failed. It is also very cheap and well tolerated.” The American Cancer Society describes it as” a promising way to improve cancer treatment.”

Another advanced cancer treatment available in America is provided at the Burzynski institute. Burzynski has developed a bio-chemical defence system which activates genes in cancer cells reprogramming them to self destruct. The high success rate that Burzynski was able to demonstrate over 20-30 years finally prompted the FDA to run a study which confirms that the approach works and has no side effects. Previously it has been standard practise of the FDA to provide drug licences only for big established pharmaceutical companies which had ruled out Burzynski’s institute.

In 2007 a small pharmaceutical company connected to the university of Alberta, Canada found a simple cure for cancer but major pharmaceutical companies were not interested in taking it on board. A Canadian scientist tested the drug on human cancer cells and found it killed lung, breast and brain cancer cells and left the healthy cells alone.
Pharmaceutical companies are not investing in this research because the method cannot be patented and without a patent they cannot make money. Research on the drug has shown support for its effectiveness and that it has no adverse side effects.
Dr Leonard Lichtenfield from the American cancer society wrote of the last study that the drug appeared to be worth pursuing. The drug is called dichloroacetate (DCA).

There is also Proton Beam Therapy a more sophisticated form of radio therapy which is one of the most precise and advanced treatments of cancer available. Unlike conventional radio therapy it is known to be non invasive and painless and causing minimal damage to surrounding tissue. I have found that the UK NHS will fund patients’ treatment, travel and accommodation to units around the world providing Proton Beam therapy. I am amazed Sally was not told this by Neon’s doctors and it is not now being offered to Neon on the NHS.

All the time there have been 2 major difficulties that Sally has had to contend with in her search to find a better, more humane treatment for her son’s condition. The first, is the 1939 Cancer act which makes it illegal in the UK to promote or advertise anything other than radio, chemo or surgery as treatments for Cancer. The second is that although adults can choose different treatment protocols, children have no choice but surgery, chemo and radio therapy (described by one parent of a child with a brain tumour as “cut ,burn and poison”), therefore clinical studies looking at other approaches are largely limited to adults rather than children.

Here now lies a paradoxical situation. If Sally wants to take Neon for a cancer treatment that doesn’t include radiotherapy or chemotherapy she is told there are no studies on children by which it can be evaluated and therefore it must be ruled out. Case histories indicating positive outcomes in children worldwide who got through the net, and successful studies with adults don’t help. The NHS consider this as insufficient argument to support a parent’s choice of one of these therapies.

It has gradually become clear to Sally that she has been caught in a web of procedures rather than true unimpeded scientific evaluation of the potential benefits of these approaches for her son. She feels she is fighting bureaucrats when she should ideally be working alongside scientists to evaluate the best choice of protocol to provide the best long term outcome for Neon.

Above and beyond all this I can see how incredibly difficult it must be for any parent in her situation to argue their child’s case without fear that their child will be taken away from them. This has in fact happened to Sally and her greatest challenge now is to recover custody of Neon. She have been widely represented in the press as being an irresponsible parent. The truth is, that as we can see from the last brain scan that Neon was never in any immediate danger requiring her be panicked into agreeing to a treatment that is painful to receive, the immediate side effects involve; a burnt scalp, inflammation of the lining of the mouth, difficulties chewing, speaking and swallowing as well as mouth and throat infections, damage to the salivary glands and loss of hair, with long term repercussions, potentially making it impossible for him ever to lead a normal life as well as making him more likely to suffer further cancers in other organs, strokes and heart attack. The choice is clearly not one that any parent wants to be rushed into. However the 1939 Cancer Act ensures that most parents tragically are led to believe there is no choice.

The more Sally read what was going on in other countries and the more she received information through her solicitor from professionals working in the field of cancer, of the spread of proven options available, the more she became aware that Neon’s life could be preserved and his future secured. From the options available there is one that does not depend upon the repeal of the cancer act for its implementation, there is also the possibility of conjunctive approaches to reduce the effects of radio and chemo and increase Neon’s immune responsiveness.

If Sally wins her case for Neon this will not be a waste of public money, rather in saving her child she will have opened a door to let in the light bringing new hope to all sufferers of childhood cancers and their families

Linda Scotson

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