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Hope in millions

I just finished reading A Change of Heart. If you haven’t read it, do it right now. The next one on  my list is Inferno by Dan Brown. I had pre ordered it when it first came out and I never got around to it. Dan Brown books are the kind of books which you remember where you were when you read them. They are a journey of self discovery and they speak to each reader in a different way. Robert Langdon, the lead character, is a professor, a researcher, he is constantly looking for answers and is known for a brilliant problem-solving mind and his genius. 17195164_10154982012445030_1234091914_o

Autism can feel like a Dan Brown book some times. *Spoiler alert if you haven’t read them*

Angels and Demons is the beginning: Strange disappearances (being the diagnosis), a secret society that has infiltrated many global institutions, political, economical and religious. Autism has been around forever, but we didn’t even know what autism was in the 90’s, in Cyprus. We couldn’t Google it. It was spoken about in hushed tones and behind closed doors. When the vaccination scandal broke out and was the rebuked the conspiracy lovers amongst us looked at the big corporations, the big boys and wondered what we weren’t being told. As soon as we started researching, looking, reading we uncovered a world we had no idea existed. A powerful word and a condition so complex we had to dig deeper before we even scratched the surface.

The Da Vinci Code is the road to acceptance. It starts with murder (like all the books) that hits close to the heart. To us it was like all the dreams, hopes we had for his future had disappeared after the diagnosis. We set out on a journey to find the reason behind why this had happened. Langdon tries to solve the mystery of this ancient secret society. He breaks codes and solves puzzles. We broke sanity barriers and solved puzzles. Our Holy Grail was finding out how to reverse this. However, when he spoke his first word, we found out that all we had to do was love him for who he was. The answer is in his heart, in our love for him. He was the Holy Grail all along.

The Lost Symbol is about growing up, about realising what you are made of; a severed hand, the story of the prodigal son resonates throughout the book. A son away from home, who always had home with him. It reminds me of leaving Chris to come live in the UK. True, I do not think of myself as the angel Moloch, nor do i intend to. But throughout the book Langdon is submerged in his research around the hidden Ancient Mysteries whose knowledge is now lost to mankind because we have stopped looking at it the right way. The Lost Symbol is  knowledge. Knowledge by education, by research, by constantly learning. That’s what awareness is all about, knowing ones self is the missing key that prevents humans from realising their true potential; that there is a bit of divine in all of us. Whether we are neurotypical or neurodiverse.

This months hope is found in research.

Edinburgh University has been given £20m for autism studies. The Simons Foundation has made the contribution hoping to delve into the biological mechanisms that underpin changes in brain development linked with autism. You may remember – or not – that the Simons Foundation was also the foundation i wrote about in 2016. (see below)

Scientists based in the university’s Patrick Wild Centre for Research into Autism, Fragile X Syndrome and Intellectual Disabilities will use advanced techniques to probe brain development in the presence of DNA changes known to cause autism. They will be looking into the wiring variety of the brain and how it can affect how it can processes information.

There are so many on going projects around the world regarding autism right now. The poo research, the discovery of ASD genes that have never before been linked to autism show that we are now committed to investing big sums in search of a holy grail, a Word, a lost symbol. We are venturing out to the unknown in search of a gene, a pattern, a puzzle piece.

Stay tuned for Inferno.

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Hope in Love

I’ve gone back to fiction books now. I’m reading A change of Heart by Jodi Picoult. You may remember her name through the floods of tears that consumed you if you read My Sister’s Keeper.

This book is about a lot of things, but mostly it’s about love. Overwhelming, unconditional love that makes us do things our brain cannot comprehend and our/or our society’s ethics and morals find inexplicable. It’s really good – read it.

So, this month’s hope write-up finds hope in love. Cliche? Maybe. But February is to many a month of love. It’s also the month that I celebrate my mum’s and my pappous birthday so it’s overflowing with love.

I searched the word ‘love ‘ on the blog so that I could refer to any previous posts I made about the topic. Apparently, I use it in nearly every post. My favourites are: 100 posts

PS Love?

When living with Autism, love is something that you never think your kid will miss; because you love them so unconditionally. But then you’re driving and he sees a girl walking down the street and he waves at her; it’s so unexpected, it’s so out of character. Mum and I laughed so loud when Chris did that one time. However, it reminds you that love – that feeling that we all need, seek, treasure – is in all of us. Whether we can express it or not, we want love in our lives. Everyone who has Autism in their life has thought about how their kid might never have that feeling, might never find someone to love, live with and have a family with. It hurts. It’s a feeling that you wouldn’t wish on anyone.

Back to love

I was on the bus yesterday when a couple sat in front of me and another sat behind me – I was trapped. Almost immediately the couple behind me (Couple 1) started tickling each other and the girl sat in front of me was stroking her boyfriends hair (Couple 2). Let me make the point that I am not a fan of PDA, I am not a fan of eavesdropping, lets just say – I am not a fan of couples. But, one of these two couples moved me so much – they were inspiration.

Anyway, to the point. I read the love story of Ron and Kristen Sandison the weekend. He jokes “My wedding anniversary is December 7th, and due to autism, I came into my new family like a kamikaze—a blazing whirlwind of fire.”

On their 3rd date Ron recalls that he revealed his “quirks” to Kristen: “After work every night, I spend 2 to 3-hours in Bible memory time. This daily routine empowers me to be able to quote over 10,000 Scriptures including 22 complete books of the New Testament, and over 5,000 quotes.”

At the 3 month point, he shared with her a story about how he carried around a stuffed prairie dog named Prairie Pup from kindergarten to sixth grade and that he collected and continues to collect Calico Critters; 3” tall animal figurines dressed with handmade outfits; hundreds of unopened boxes lined up in perfect rows against his bedroom wall at his parents’ house.

On their one year anniversary of their first date Kristen gave him the Calico Critters Meerkat Family.

On their 3 year anniversary, they had on Calico Critters on their wedding cake; the bride and groom were cats and the priest a beaver.

In March 2016, they welcomed a baby girl.

Ron thanks his wife for demonstrating compassion and sensitivity to his sensory issues by not using nail polish in their apartment or playing music with bass. He thanks her for proving everyone who doubted that Ron could be loved wholly and unconditionally by someone one day, wrong.

Ron writes for magazines and does guest lectures on autism. He wrote A Parent’s Guide to Autism: Practical Advice, Biblical Wisdom. Ron Sandison works full time in the medical field and is a professor of theology at Destiny School of Ministry. He is an advisory board member of Autism Society Faith Initiative of Autism Society of American. Sandison has a Master of Divinity from Oral Roberts University and Charisma House. Find out more about him here.

There is love out there for all of us. Refusing love because someone can’t stand the smell of bleach, because they are this, that or the other is judgement embedded in us by made up standards society imposes on us. It’s up to us to stand up to these moral, ethical, political barriers and believe that love trumps hate. For eons gone and for eons to come, one thing has been constant and one thing have we not been or will not be able to live without – love.

Happy Love month love bugs from me and my eternal Valentines:

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Hope in Poo

(One of) my New Year’s resolutions was to read more non-fiction books. I just finished a book about Pablo Escobar and now I’ve moved on to a nurse’s recollection of what it was like to be a nurse in the 50’s.

Both post-war Colombia and post-war Britain made the current politics scene more real than ever. People had just gone through a wars that left thousands dead, they lived in fear for years and in the end they thought it would never happen again.

IMG_5933And then these guys come along. In times like these it’s easy to give up and it’s easy to overlook hope.

So, I’m going to start a monthly hope write up. This month’s hope can be found in poo. That’s right, our world is so effed up that we can now find hope in poo.

On the 23rd January, a study was published in the Microbiome Journal (here) which claims that Microbiota Transfer Therapy (Fecal microbiota transplant (FMT), also known as a stool transplant, is the process of transplantation of fecal bacteria from a healthy individual into a recipient) alters gut ecosystem and improves gastrointestinal and autism symptoms. The investigation involved 14 days of therapy with oral vancomycin (an antibiotic used to treat a number of bacterial infections) followed by a 12- to 24-hour fast (clear liquids only) with a bowel cleanse using MoviPrep (laxatives). On day 16, to repopulate gut microbiota (the ecological community of commensal, symbiotic and pathogenic microorganisms that literally share our body space), a high initial dose of standardized human gut microbiota (SHGM) was given either orally or rectally for 2 days followed by daily, lower maintenance oral doses of SHGM coupled with a stomach-acid suppressant for 7 to 8 weeks. The stomach-acid suppressant was used to increase survival of SHGM through the stomach. The children were followed for an additional 8 weeks after treatment ended.

What?

Basically:  18 patients aged 7 to 17 years who had ASD and moderate to severe GI problems were given antibiotics for bacterial infection followed by laxatives for 14 days. Then, they were administered a high dose of a range of microorganisms for 2 days. Followed by a lower dose of said microorganisms and stomach-acid repressants for 7-8 weeks; which helps the microorganisms survive longer.

ASD-related symptoms improved, as reported by the Parent Global Impressions-III (PGI-III) assessment, which evaluates 17 ASD-related symptoms, showed significant improvement during treatment and no reversion 8 weeks after treatment ended.

One of the many theories about where autism comes from has been the gut. That’s why we use gluten-free and casein-free diets as an alternative treatment. In “Best Food Critic in Town” I mentioned: Marilyn Le Breton, who explains:

“When you eat, the food you consume is broken down in your stomach. The bits that are not used by the body are flushed out as waste matter. In autistic people, the breakdown of two proteins present in some foods, gluten and casein, is not completed properly. The resulting fragments of these proteins are called peptides. Peptides are small enough to pass through the wall of the gut, rather than being processed in the normal way. As the peptides journey around the body, they make a pit stop at the brain, where they do untold damage before continuing their journey and finally making their way out of the body, via urine. Both are very similar to morphine, a highly addictive drug.”

What this study proves, on a small scale, is that perhaps cleaning the gut of neurodiverse people from the bacteria that the body does not keep in neurotypical people could be the one of the answers we have been looking for.

Hope.

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10 minutes for a lifetime

This week is Anti-bullying Week – it is coordinated by the Anti-Bullying Alliance. The theme this year is ‘Power for Good’.

I can hear you wondering how you can get involved – here’s how:

  • If you are a school or college, register for Anti-Bullying Week updates by joining the free ABA School or College Network. (Time needed: 1 minute)
  • Download the Anti-Bullying Week logos and share on your websites and newsletters. (Time needed: 1 minute)
  • Have a look through the free Anti-Bullying Week resources . (Time needed: 30 minutes, or 5 minutes or however long you want it to take)
  • Join the Anti-Bullying Week social media campaign – upload our Twibbon, share our pledge and tell us how you will use your Power for Good this Anti-Bullying Week.(Time needed: 5 minutes)
  • Raise much needed funds for the work of the Anti-Bullying Alliance by dressing up as a hero of your choice!
  • Take action now and contact your MP to ask them to support Anti-Bullying Week! (Time needed: 3 minutes)
  • Teach your children to accept and love their peers by educating them about disadvantage, disability, poverty, self-esteem.

pledge_postSo, to do all of the above (excluding the obvious such as running an event and reading material) takes approx 10 minutes. 10 minutes to make some of your friends take notice by sharing the campaign or using the twibbon. 10 minutes to take away the devastating effects of bullying and change someones life. All you have to do is make one person aware.

I was bullied in school, for years; but i had a very loud voice, a family that never let me fall, I stood up for myself and it made me strong. Think of all the people who don’t have support. The ones that suffer in silence, the ones that are so emotionally abused they end up believing their bullies. Think of the children who don’t have a voice. The ones who are made to think they are not ‘normal’, the ‘weird’ ones, the ‘outcasts’. Think of the people that choose suicide over life; Bullied victims are 7% to 9% more likely to consider suicide according to a study by Yale University.

The are people, living in this world that are so emotionally, physically, psychologically abuse by others that they want to stop being alive. They want to stop breathing, sleeping, eating, love, miss, cry, laugh because of bullying.

The UK Annual Bullying Survey 2016 found that:

15064926_10154625430215030_61308079_o 1.5 million young people (50%) have been bullied within the past year.
• 145,800 (19%) of these were bullied EVERY DAY.
• People who have been bullied are almost twice as likely to bully others.
• Twice as many boys as girls bully (66% of males vs. 31% females).
• 57% of female respondents have been bullied, 44% of male respondents and 59% of respondents who identified as trans have been bullied.
• 24% of those who have been bullied go on to bully.
• Based on their own definition 14% of young people admit to bullying somebody, 12% say they bully people daily.
• 20% of all young people have physically attacked somebody.
• 44% of young people who have been bullied experience depression.
• 41% of young people who have been bullied experience social anxiety.
• 33% of those being bullied have suicidal thoughts.

You can read the whole report here.

More autism-specific stats in December 2015 showed that parents of over 900 students in the UK with children suffering from aspects of Autism Spectrum Condition (ASC) revealed that 61% of those asked said their child was being bullied because of their autism related condition.

A small fraction of stories that came to light in 2016:

David Wooby was discovered in February by his parents with a ligature round his neck. His father David Wooby told the inquest he believed his son had been in a “spiral” of depression due to bullying and had purposely taken his own life.

Harry Gosling,12, suffers from autism and ADHD and his father, Graeme Hunt, claims he has been targeted by fellow year eight pupils, leaving him suffering from seizures after being ‘tied to a tree and punched’ by bullies.

A Tiverton schoolgirl with special needs and her two sisters have changed primary schools because of bullying problems.

Robert Howard was bullied, and hit in face with traffic cone.

What’s 10 minutes if it means saving a life?