Paul Isaacs' Blog

Autism from the inside


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A Journey With Cancer, Treatments & Side-Effects

Dad in his 20s 2

 

Cancer is a hard thing to talk about my Dad was diagnosed in 2009 with a type of blood cancer called Chronic Lymphocytic Leukaemia which attacks the white blood cells and comprises the auto-immune system. Early warning signs included fatigue and hard node underneath his armpit. After this diagnosis he got a second which would change the outlook of mortality and treatment in which he had genetic mutation of the p53 gene which is called the “guardian angel” gene for cancer. He in 2010 had been given three months to live if he didn’t have a bone marrow transplant (which came from Germany and the person had the same genetic deletion) it was then he had chemotherapy the the transplant.

He told me that one of the most difficult things prior was signing a piece of paper acknowledging that there is a 25 percent risk of him dying through this procedure. I am sad to say it but one of the worst things about the experience was the wards lack of knowledge on Autism and Asperger’s Syndrome and by letting staff members know actually made an already compromised and critical situation much worse he was name-called, laughed at and escorted out of his room during the his last day he belongings stuffed into black bags and told to wait in the communal room despite him almost dying almost three times in the 12 weeks due to fungal pneumonia. I trained them in autism for an hour.

The team gave him too much of the bone marrow donor swapping a life threatening disease to a chronic disease called Graft (donor) vs. Host (the person) disease which attacks the soft tissue, eyelids, foreskin, lips, mouth, gums etc leading to tooth decay, gum recession in my Dads case

The drugs he takes now is something called perdnisolone which was created in the 1940s in is a type of immune-suppressant which in the short term is very good but in the long term can have dramatic and even life-threatening consequences. My Dad has been on this drug for over six years and the effect on his life have been drastic mood swings, mania lasting days, explosive and odd reactions to sometimes the most trivial of comments, impulsive behaviours, personality changes (narcissistic and self-centred ideals quite the opposite to my Father’s kindly nature), psychotic episodes and paranoia. The hardening of the trunk of his body means he finds it hard to breath (dermatological disease), high blood pressure and muscle spasms and the constant flip-flopping of drugs (if you go over 20mg of pred you must take additional tablets to counter the side-effects of this). His body is steroid dependant meaning that I feel there should be alternate looks into helping a person safely ween off this drug.

Recently my Dad went “cold turkey” for over a month because of these side-effects his nervous system went into shock in the second week causing him to vomit, blood pressure to drop and so he self admitted to the triage in which he was giving pred as the only option. Chemotherapy, Radiotherapy and Predisoalone are all legal but destroyed and suppressed my Dad’s immune system to the point that he wasn’t my Dad anymore. I know there are other family members going through this I would like to say you have my sympathies.

I would to point out that my Dad is a positive and assertive person and through continued self direction, realist attitude, objectivity he strives to live his life as full as he can. 😊

#disablityandcancer #immunenology #autoimmunedisease #CCL#p53GeneDeletion #Aspergerssynrome #autism #sterioddependant #life#cancersupport #cancercare

Paul Isaacs 2018


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An “Autistic Mind?” Really?

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Stretched along a small fractional time-span of life which I have lived in comparison to the elders around me, I sought to wonder my inked mind of swirlyness in which fragments put out of the ghost-like fog like bearing lanterns in London in times of old.

My mind is blocked in certain areas of passage but not as much as it used to be in terms of having a “seeing mind” and “hearing brain” that boggles with pre-filtered thoughts that extract readily through my fingertips as if a giant piece of knowledge was wailed with me knowing why or what it is used for.

I would say if anything my mind is “human” as subjective as a term should be, but never the less as true as the sun in the sky and the forests in the wood that is in mind at the heart of the matter, the core that runs the coils, the heart-mind that beast my inner cavern of light and darkly thoughts .

My eager soul is not wanting the when whole cake of me to be seen as “autistic” because in the end if you had an “autistic cake” would it really just taste of “autism” I think it tastes of so much more drenched a mouth of fruitful flavoursome differences that colour my being stretched on a canvas of existence.

Paul Isaacs 2018


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What is Achievement?

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Do you judge achievement by the vastness of comparisons or by the person cantered nature of what has been achieved? I have not married nor have I the desired to have children. I ask how is my life welling up with fullness and ethereal walkings amongst the populous of humanity? Because I am comfortable in the roads, paths and darkly forests that tread beneath my feet. I think “achievement” is not what, if or how it’s the reason and honest virtues behind them that make them special and worthy.

Paul Isaacs 2017


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Autism -The Three Stages of Empowerment

Autism “Fruit Salads”(© Donna Williams 1995/2005/2014)

This is bottom to top analogy which implements all aspects of what could be in a person’s “autism fruit salad” to start off with the foundation is to understand the mechanics of what is within a person’s “autisms” (rather than autism). By looking at this we can separate it into these aspects.

  • Communication profile
  • Social-emotional profile
  • Emotional processing profile
  • Sensory Integration profile
  • Sensory Perceptual profile
  • Receptive Language profile
  • Expressive Language profile
  • Motor-coordination profile
  • Dietary profile
  • Auto-immune disorders profile
  • Learning styles profile
  • Personality types profile
  • Identity profile
  • Co-conditions profile

Interventions

These will be tailored to the specific needs of person’s profile/profiles looking holistically as well as professional for empowerment, guidance, social support, emotional support and/or any aspect of the person “autisms” that is within the mix. For example you could have someone who has exposure anxiety and dislikes direct confrontation and prefers an indirectly confrontational approach, is profoundly meaning deaf and aphasic. Think how you would build up that person’s profile and empower them?

An example

  • Gestural language
  • Aiding Mentalising by building up meaning and association
  • Being a follower not a leader or an expectant doer
  • Leave them wanting more and giving positive affirmations

Solutions

They will come in many forms as they marriage of each step relies on the one previous with regards to the “final step” this will be looking at what is working, aiding and empowering the person, their families, guardians etc. This could be put in an report or functional document for educational and professional services to have or it could be used as an information pack for friends and family the choice is yours.

Remember autism is not ONE THING it is a CLUSTERING of pre-existing conditions within one PERSON and that is the thing to realise that one person’s reality does not mean that is representational of all because that would mean a lot voices and realities would be left unheard it is time to change the landscape and starts with being open minded.

Paul Isaacs 2017


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To My Gramp – Gilbert Harpwood A Man Who Enjoyed Life

My Gramp Gilbert Harpwood was a man who enjoyed life to the full he was an avid gardener tending to his vegetables and flowers with relish and passion, eager to plant his seeds that would blossom each year such as his runner beans, cabbages and brussel sprouts they tasted lovely and as he said it is because they’re organic.

Gramp 1930s

He was fascinated by the weather noting and logging the rainfalls and temperature changes through the years in his little note book which he called his “diary” which he has many of and would be interesting to look back at what he noticed over the years.

His other main passion was football and he was an avid support of Oxford United all of his adult life going to the Manor Stadium and also Kassam, he made many friends there and made lots of fans around him laugh with his antics and child-like wit which came in the form of chants, laugher, heckling and being accompanied by his little teddy mascot called Messy which he put in his bag with his little head poking out. Gramp always liked to imagine he was watching the game too.

Gramp Oxfod United.JPG

My Gramp was a pragmatic, idiosyncratic, humorous and a largely misunderstood man he was caring, loving, helpful and affectionate in his own unique way to his family and close friends. He was a very guarded man and liked to keep himself to himself only opening up to people whom he felt comfortable with. I am grateful for knowing him and spending time with him listening to his stories of old, wisdom, humour, political views and so forth.

My Nan and Gramp had a wonderful relationship which last over 60 years during his passing she viewed him as her rock they had a deep love for each other which last a lifetime with treasured loyalty to his wife, both sharing precious moments such as marriages, births and anniversary celebrations. Gramp’s favourite time of the year was Christmas time in which he would like to play the jester eagerly taking part in jokes, enjoying the food, the TV programs and other festivities with the family.

He made firm contributions to village such as aiding the management of the roads around the area, letting the council know about filling in the pot holes and also taking a general interest in village life attending the meetings at the hut.

 

Nan & Gramp 50th Wedding Anniversary

He was diagnosed with Asperger’s Syndrome a form of autism in 2011 at the age of 84 which in many ways surprised me that he was open enough to go to a diagnostic session and open up about his life with such candour and honesty, when the session was finished he concluded that is “why he was like he was”.  Reading books on the subject from the library.

Despite his cancer he carried on till the end a lover of life and person who wanted live and he will do in our hearts and minds forever if there is a cloud up the sky with a garden patch ready to be tended to I know my Gramp will be there ready to tend to it.

I love you Gramp and thank you. 🙂

Paul Isaacs 2017

 


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To Friends for Friends What is Happiness? :-)

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 This is sage works, thoughts and feelings from social media when I said about doing a blog about “What is Happiness?” I am pleased with the diverse and really lovely responses. 🙂

  • being understood by people
  • Happiness is what you make of your life and live it to the whole without
  • Happiness is fleeting
  • Joy
  • Happiness for me is seeing my children happy – x
  • I think he’s writing in the broader sense x
  • Happiness is my aspergers. [13 year old] son making me a fan from parts he savaged from dead DVD / equipment and lego – powered by USB and a solar panel to help me with my [menopause] hot flushes.
  • Happiness is walking around with a clear head, able to observe and enjoy the surroundings without anxiety.
  • Or eating a different food 🙂 x
  • Still seeing my little one even though I’m away visiting my Mum who’s 300 miles away.
  • Seeing my amazing son grow from being an angry, confused boy who struggled with ‘the world’ into an ever growing confident , young man with so much to look forward to 💙
  • Happiness is my dog x
  • A fleeting feeling when things are going well. All the more potent when it arrives unexpectedly 😊
  • All of my children bring happiness to me. I am so proud of who they are. I am also happy when my baby makes progress.
  • Happiness is being relaxed, safe and challenged in an enjoyable way.
  • GBU
  • Happiness to me is enjoying the moment without stress or fear but feeling completely at one with the world and relaxed . Its a strong rich feeling making life feel good when you experience it. X
  • Happiness is making a genuine difference through collaborative and creative autism awareness workshops. Nobody wins unless everybody wins 🙂 Hope to see you at one of your future talks, Paul. Best Wishes
  • Happiness is our son being happy. (We only have one child) 😊
  • Doing something I enjoy doing!
  • For me, I think there are very different sorts of happiness. Perhaps the most intense is being aware that someone I love is happy; if it is because of me, that’s even better. Another is feeling that I have done a good job intellectually in some way and increased the sum total of human knowledge. Another is the great feeling of physical well-being that endorphins give you after you’ve been exercising. I climb whenever I can, partly because it is great fun in itself and partly because whatever stresses and anxieties are bugging my life, I feel great once I’ve worn myself out doing it. These are all very important to me.
  • Happiness happens when i’m alone. Its like my brain gets some high by being alone
  • Happiness is being fulfilled. I don’t think the pursuit of happiness is very helpful in itself but the pursuit of being fulfilled..? That’s a slightly different goal but changes entirely how you look at life!
  • Happiness to me isn’t a result of anything, despite its arrival often being influenced by certain things or thoughts or thoughts of things – it is the glowy thing, that glowy thing within, and when it glows inside me, it beams around my bodymask making everything else seem more glowy than usual, and it can be passed around and shared like a flowy magnetic glitter-ocean, though can also be snatched and disappeared at an instant by the click of the claws of a happy-snatching monster.
  • Happiness for me, is…
    As a mum: To see my children achieve even the smallest thing independently. For my boy with autism, especially, when he’s made an independent decision, and when he chooses to hug me and show love. For my NT girl, hearing her laugh big and loud with her friends; watching her dance and hearing her sing.
  • As a professional: Feeling productive and part of a process to produce something worthwhile. Being individual but within a team.
  • As an autism volunteer: When a parent tells me that they no longer feel alone; seeing parents’ reactions when their children reach out to another child or young person and socialise for the first time at Parents Talking Asperger’s.
  • As a friend: Being there for friends whatever in good times and bad.
  • As daughter: Just being with my beloved parents even for five minutes.
  • As a Christian: Learning to be what God wants me to be to serve him and help others. Thanks Paul.
  • to me happiness is knowing that I have the resources to deal with whatever comes up. Not much to ask hey? X
  • You can choose happiness no matter what is going on around you. Happiness isn’t just being content – God gives us the opportunity to see good in all by allowing happiness. But it is a choice.
  • I’ve come to realised that for me, happiness is acceptance of the journey. 😁
  • Easy company with the people I love who are wholly accepting of who I am. X
  • Sitting outside with family and friends during a breezy day. And having a bon fire at night.

Paul Isaacs and many contributors 2016


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You “Neurotypical” – When Reverse Prejudice Is Justified – Houston We Have A Problem!

Reboot Season 114WHAT “NT” MEANS

The word is well a term for people “off the autism spectrum” but when it is used in a such way to discriminate against a collective of people in which “other” is deemed as wrong, offensive, unaware, lacking, not knowing, stupid and ignorant it doesn’t matter how you package this one it is still wrong to be prejudice it is still wrong to project views that are bigoted and hiding behind a “good cause” doesn’t wash with me.

At the end of my lecture I asked ‘did you enjoy the talk’.

The leader of their group replied in a tone lacking in warmth, ‘it would have been better without any NTs present’. The others chimed in in support of him. Alienated, I left them to it.

Later when they were buddying up with more of the same separatist rhetoric and there was a tone to it that sat uncomfortably with me, a tone I’d heard before, in hierarchical non-autie children in playgrounds once upon a time (where I’d also known nice ones).

I had to let this group know that I simply don’t do bigotry… that my non-autie friends are not typical, mundane, boring or expendable and that I refuse to use any derogatory term that hints they are such, such as ‘NT’.

As you can imagine, they were quite taken aback. I was meant to ‘understand’. I was meant to be ‘one of them’. But if ‘one of them’ meant I was meant to hang out in a group and dislike or disrespect another group, and share this as ‘belonging’ and ‘shared culture’ and ‘shared understanding’ then this wasn’t ‘me’. Donna Williams (Polly Samuel)  

PREJUDICE IS PREJUDICE REGARDLESS OF THE WORDS USED

I will like to let people be aware that anybody who has used this term to the effect stated in this example – have you ever been called names? Names that hurt? Names that make you feel like shit? Names that question your own being? Names that make you feel small or inferior? If you have then surely you must understand that any form of separatism is wrong and that if “you neurotiypical” was used  in any other context such as race, gender or sexuality it would rightfully be deemed offensive.

“NT” & “AUTISM THEY ARE ADJECTIVES

“NT” is word a never use now because of what it has connotations with but people are people and acceptance doesn’t come from pigeon holing collective realities as “NT” or “autistic”  how about seeing people as human beings in the world we live in now we are forgetting that fundamental fact I see people. Seeing people is cool. 🙂

Paul Isaacs 2016