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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Daisy King, Kabuki Syndrome and Autism

Daisy Image 2018

 

I first met the endearing Daisy King when I done consultancy work at The King’s home about two years ago, we have since become friends.

Daisy King is in the later years of teenage hood and is very charming, warming and loving to the people she meets. She does not have verbal speech however she shows her wants and needs through tonal modulation, directing the person, objects of reference and gesture.

She has low muscle tone (which is a feature of the syndrome) but that doesn’t stop her from wanting to get around to meet people, play with them or go for a walk with her friends and family, she has problems with feeding but has a tremendous appetite, she has her person care needs met by her family and big sister Rosie. She is loved and shows it in a give and take fashion.

Sensory Perception, Meaning Blindness (Semantic Agnosia)

I was 19 when my ex-shrink declared from across the room, ‘You have agnosia’. We’d evolved into a friendship thing and I guess in my years as her patient she didn’t have a shelf of objects in her room so had never really seen me handle them. But here I was with a rubber thingy in my fingers upon which was balances a hollow tube like structure which made a good sound when tapped. I had suddenly declared ‘this is a baby’s bottle’… probably fairly obvious to most given this woman had a toddler, but to me this mysterious structure was something of unchartered territory though it’s likely I’d encountered hundreds of them in my 19 years of life by that time, let alone grown up with one. But that’s visual agnosia for ya (semantic agnosia).

Donna Williams

Daisy seems to be meaning blind so externally explores around her liking to connect people through touch, pressure. If one doesn’t have a level of visual “recall” it would make sense that she explores people and objects in this fashion to get a “reality” other than “seeing” despite her eyes working.

Sensory Perception, Object Blindness (Simlutagnosia)

As a person who grew up with inability to simultaneously process my visual world, leaving me seeing everything bit by bit, context blind, face blind, often also semi object blind, I feel visual perceptual disorders played a significant role in my learning, development and inability to also gain receptive language processing or functional speech until late childhood. But what weight might visual perceptual disorders alone play in the development of someone’s autism?

Donna Williams

When your visual world is so distorted, lacking interpretive meaning and “fragmented” Daisy shows many clever signs of trying to get coherence from the visual world around her she will twiddle, spin and balance objects creating movement for people with an array of visual perceptual disorders objects may be “dead” when there is no movement and/or sound present. She also at times looks out the corner of her eyes using peripheral vision because it is easier to process and percieve rather than central vision which causes the distortion.

Daisy and Paul 2018

The “System of Sensing”

The realm of sensing is the place we have all come from: that world before mind was thought of as ‘me, before body became ‘mine’, that time when we ‘knew’ because we FELT the nature of things, the feel of them- when we sensed. This was before we had learned to interpret and see the world not as it was but through our concepts and ideas of what it was.

Donna Williams

When someone is in the system it often gets confused (because of the external “behaviours” and presentation) as someone who has a “low intellect” I challenge this because if the system is still present that means that the person is taking in the information around them but is “feeling” rather than putting it into other more “interpretive” framework.

Daisy seems to live very much in this system in terms of her interpersonal relationships with her family and friends. She is fun, cheeky, outgoing and shares her Mum’s idiosyncratic personality and mercurial personality.

In the end she is a human being living and loving life. 🙂

Paul Isaacs 2018

 

 


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Book Review How to Best Help an Autism Mum By Sharon King

Image result for Sharon King How best

BOOK REVIEW

Sharon brings to the life a world in which people need to know about and the confines of subjection opened up deeper and emotion as a well placed flower, gathering water and sun in equal measure. Sometimes people do not realise the awareness and complexity of the flower and sundered people look back tracking the enlightenment and darkness as forms of reflectivity and an eternal promise of and finding of happiness and stability. Through expereince one does grow and Sharon presents her own beautiful journey of grownth to the eager reader.

Sharon conveys deep emotional introspection and wit in equal measure and she takes us on a journey that is like dark chocolate mixed with sugar bitter sweet and to her own admission it is so as she explains that with glorious and saddening anecdotes, personal examples and gentle direction to aid, advise not only the autism mum but the friends and family around her.

She talks of her feelings of her three children being all diagnosed on the autism spectrum, her husband, family and friends with a whole family dynamic in tow opening up a social context to which autism should and has to be put in. How else would one learn of differing forests and pastures not trod? Unless the delving experience hasn’t been shared to others? Sharon’s wit, desire, vitality, vulnerability, realism and clear devotion to her family burst forth from page to page.

I highly recommend this book to people on the spectrum parents, siblings and professional to let lose parental, practical, emotional and empowering grasp on the realities that are faced.

Paul Isaacs 2017


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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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Meeting Up With The Kings – Part 2

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I enjoyed very much the time I spent with Kings who show great humility, kindness and gracious affection and homeliness. When I entered their home I was greeted by lovely smiles and warmth that trickled into my soul and made me feel an better person and a more completed being. I such relished the opportunity to glide with them through their family duties with candid humour, streams of meaningful intentions, words dominated and unsuppressed wantings, needing and beings where presented in a warmly household.

Image result for The Kings Autism

Whose sole intentions are to be open and show the utmost loving for mortal people and animals that lightened up many a darkened patch from soddened ground to beautifully fertile and transient piecing the heart of me with curiosity. I would love to visit again. 

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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Being Thankful For My Parents

Mum and Dad Early 80s

Please note this is from a personal perspective

It may sound like a cliche in many ways to create a blog with a title such as “Thankful for my parents”  but that is how I feel I know that many people may not for many reasons feel the same as me and that is fine.

I am thankful for them because they  have given me good boundaries, have treated me as a human being then growing up as an infant, teenager and now as an adult, they do not let my disability “define the whole package” (I have written many a blog about that subject), guided me to know that failure and being wrong is normal part of life, to accept and take responsibility for both positive and negative actions, to help people who need it, to always be truthful and be true to yourselves.

I value their sage wisdom as many of these “mantras” and “life skills” come from past mistakes and “failures” but as my parents have noted failures are the fruits of success and success comes in many different forms as example setters for us all.

Paul Isaacs 2016