Paul Isaacs' Blog

Autism from the inside


In The Last Ten Years

Looking Back

The last ten years have been very intersting in 2009 I was recently out of the Mental Health Services with two personality disorders, auditory hallucinations and psychosis, I was self harming and attempted suicide.

Early Infancy

By clinical observations I was serverely autistic, I was profoundly meaning deaf, meaning blind, body disconnected, oral apraxic and didn’t gain functional speech till later in infancy. I was and am thankful to my parents who had no means of any interventions (in the late 80s many were dated).

In 2010 I was diagnosed with autism and OCD and my speaking career started off in which I went freelance in 2015.

“Standards of Success”

By “non-autistic” standards I “made it” in many ways I suppose. I was considered “retarded” by the village I lived in and was targeted and bullied by the children and adults till my mid-teens.

Education

I was targeted and bullied at school from primary to secondary when I finally left in 2002 (with an isolated incident of sexual abuse) in the latter.

I went on to do an ICT coursecfor a year and had the greatest experience of my life from and educational perspective it proved I could be educated.

Bullying and Employment

The bullying in employment started in 2002/3 so multiple jobs were lost and gained.

I was thankful to the autism base in Chinnor in around 2008/9 for supporting me as well as the start of my speaking career in 2010. Over that period of time I wrote and authored 5 books.

The bullying in employment stopped in 2015 when I went freelance and started working for My World.

This is longest time in employment that I have been safe, comfortable and seen as a part of the team.

I Am A Person-First

People wonder why I use “person-first language” this is why because I do not want to be defined by a “label”. I do not like serperatist “them and us, us and them” rhetoric we (as beings) are all a part of the human race

From 2013 onwards to now I am pleased to have met some of the most wonderful and friendly people in both my personal and professional life.

Love and Life

I lost my Gramp in March 2017 due to metatastic prostate cancer, one of my dearest friends and mentors Polly (Donna Williams) in April that year also to metatastic breast cancer and my Nan in December 2019 due to pneumonia. I shall always cherish my fondest memories of them.

I almost lost my Dad in 2011 due to chronic lymphocytic leukemia and then meningitis in 2018 as well as my Mum in May 2019 due to a complex thrombotic disease.

Creative Mindsets

I have had great fun dabbling in art, poetry and what I call “insta-modelling” in which to my surprise and support from my friends up north has been rather enjoyable!

I have been interested in androgyny for many years prior and have been told I look as such.

One of things I can do well is pluck my eyebrows which I consider an achievement as much as anything else! ūüėČ

Conclusion

So look beyond what is here, look beyond what is heard, what is seen, what is touched and sense people because every cherished little person is special and of equal valor and humility in this world.

Paul Isaacs 2020


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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.¬†ūüėä

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

Paul Isaacs 2018


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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¬†‚Äúdiary‚Ä̬†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‚Äôs 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¬†‚Äúwhy he was like he was‚ÄĚ.¬† 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. ūüôā

Paul Isaacs 2017

 


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When Your Father Has Cancer And Life Is Comprised It Puts Things In Perspective.

20160708_194624My Dad is a foundation of why I do not wallow in self pity for too long, he is a trooper with a good sense  humour and a positive  outlook on life itself, for five years he has been in constant pain due to his leukaemia and graft vs host disease.

I am constantly reminded not only of the fragility of someones mortality but also the inner positivism of the human spirit, he seldom moans, complains or feels sorry for himself he is always pushing himself to the limit supporting the family as and when needed.

He takes 90 tablets a week all to aid his fragile immune system and he has weekly checkups and is on a high dose of steroids and has blood cleaning once a week also.

He is tired a lot with pain or high and emotionally unbalanced due to the psychological fallout of having a high dose of steroids. I am glad he is still with us and I am so glad I can spend time with him we support each other he is a practical, down to earth man, takes no bullshit and shoots from the hip. I respect his worldly wise advice giving  good foundation for accepting failure as normal, taking ownership of situations and humility. He is highly spiritual.

His life may well be shortened ¬†but he is adamant to live it to the full. ūüôā I think we could all learn from this.

Paul Isaacs 2016

 


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When People Have Cancer And Others Are So Selfish

Dad 2012Think About This?  

I like this a lot me Dad gets this all the the time you “look well”, “you seem well”, “you look ok”, “you look healthy” or the best on “you can take a tablet for that?” well when my Dad is

  • In Perssiant pain
  • Fatigue
  • Depression
  • Reacting to drugs on a daily basis
  • Blood infusions (cleaing his blood) on weekly basis
  • Muscles that tighten on a weekly basis
  • Soft tissue that is so damaged that he has scarring on his lungs
  • Graft vs host disease that leaves him in pain and fatigue
  • Nearly dying in hospital on five separate occlusions
  • Leukaemia that effects his auto-immune system and has done for over 6 years

Then maybe just maybe will people think about my Dad ‘s or our family’s reality? Rather than ignoring him on the street or where he lives (yes that has happened on more than once) even if you don’t speak to him. don’t be so selfish, narcissistic and ignorant to think that everything is going to be on your terms and is always about you.

My Dad is a humble, easy-going, socially accepting man and is still a very positive man despite the difficulties listed above. ūüôā

What is Sick Supposed To Look Like Anyways? Video Link 

Paul Isaacs 2016


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Mesothelioma¬†¬†Awareness – Heather Von St. James

Heather Von St. James 2013

Heather Von St. James

Cameron & Heather Von St. James

Cameron Von St. James contacted me and talked about his wife Heather‚Äôs amazing and inspiring journey with Mesothelioma a form of cancer ‚Äď through awareness we can reach out to those who are touched by cancer the people, their families, friends and loved ones and help.
I urge people to become aware and share their stories, moments and hearts to this cause and spread awareness, knowledge and hope.
 

Mesothelioma that affects the pleura can cause these signs and symptoms:

·         Chest wall pain
·         Pleural effusion, or fluid surrounding the lung
·         Shortness of breath
·         Fatigue or anemia
·         Wheezing, hoarseness, or cough
·         Blood in the sputum (fluid) coughed up (hemoptysis)
 
In severe cases, the person may have many tumor masses. The individual may develop a pneumothorax, or collapse of the lung. The disease may metastasize, or spread to other parts of the body.
 
Tumors that affect the abdominal cavity often do not cause symptoms until they are at a late stage. Symptoms include:
·         Abdominal pain
·         Ascites, or an abnormal buildup of fluid in the abdomen
·         A mass in the abdomen
·         Problems with bowel function
·         Weight loss
In severe cases of the disease, the following signs and symptoms may be present:
·         Blood clots in the veins, which may cause thrombophlebitis
·         Disseminated intravascular coagulation, a disorder causing severe bleeding in many body organs
·         Jaundice, or yellowing of the eyes and skin
·         Low blood sugar level
·         Pleural effusion
·         Pulmonary emboli, or blood clots in the arteries of the lungs
·         Severe ascites
 
A mesothelioma does not usually spread to the bone, brain, or adrenal glands. Pleural tumors are usually found only on one side of the lungs.
Copyright Wikipedia 2014

Useful Links

 

 

 


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Reflective Thinking – My Father’s Glass Is Half Full – Is Yours?

OVERVIEW

My Father has a form of Leukemia called CLL with P53 gene deletion he has always reminded positive during his journey 

Dad With Cake

“Two and half years ago l was told by consultant l had months to live without a bone marrow transplant.”

“I was in hospital for 2 months got fungal pneumonia that nearly finished me off. I am nobody special a working class bloke. My experience with death has made me very spiritual people that know me may be surprised..but that experience has changed me forever.”

Paul Isaacs  2014


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Autism & P53 Gene Deletion – Metabolic Disorders are Apart of Autism “Fruit Salads”

Dad's 40thOVERVIEW

My Dad was diagnosed with Asperger’s Syndrome in 2010, before that he was diagnosed with a form of blood cancer called CLL, what was also recognised in is that he had a p53 gene deletion which is a protein which protects the body from cancer and other auto-immune attacking virus’/cancers/bacterias.

Some people with Autism is not purely neurological it is biological too and that can mean the metabolic and autoimmune systems can be affected as a result, I believe this broadens the diversity of Autism and its different presentations and also I believe more research should be done in this area. Donna Williams also has these issues within her Autism “Fruit Salad” also.

P53 GENE DELETION & AUTISM

Over ten years ago in the USA they done a test on 30-40 men on the Autistic Spectrum and they had partial to full p53 deletion.

PDF LINK OF ASD & GENE DELETIONS

My Dad is a very positive and empowering man and I wrote a poem which I feel, reflects this I love him dearly. ūüôā

CONCLUSION

In Autism don’t “mourn for the life you could have had” work with what you have got here and now – My Dad¬†has confirmed to me how precious life is, how words should be chosen properly and actions should be thought through – It’s him and what he has been through with a smile, positivity, courage and inspiration. I supported him in hospital with Autism training for the staff on the ward, he supports me when I have no more words and need assistance with things.¬†¬†Give and take is so important.¬†

POS ENERGY MAN (inspired by my Father)

Pos- Energy Man came from a land
Where all the bad stuff came and dealt him a hand?
“Oh no” said Pos-Energy man this is not my time, nor my plan
Surrounding himself goodness, surrounding him with love
So he could be a as free as dove
Pos- Energy Man came from a land
But that doesn’t mean he has to play the same tune of the band
Life hasn’t dealt him a bad hand
Because he has a loving plan
To live his life in Pos- Energy Land
That is the Goodness of the Pos- Energy Man

Paul Isaacs 2014