Posted in Causes

Not worthy

Look at these faces… remember them x

I recently read an article detailing the fact that a doctors surgery in Somerset sent a letter to Voyage Care, a facility in which supports adults with Autism and other learning disabilities.

The letter stated that the adults in their care should all have a DNR agreement in place in light of the current Covid-19 pandemic. In case you don’t know what DNR stands for it means do not resuscitate which basically means that if your heart stops or you can not breathe then medical staff will not issue CPR. No chest compressions. No mouth to mouth. No respirators. No defribrillation.

The ethics of asking anyone to sign or agree to a DNR is shaky at the best of times.

This letter was sent without any consultation with the families of the adults in question. Having any form of learning disability is never a reason to decide not to help someone to survive!

The British medical association states that a blanket DNR targeting one group is completely unethical and unacceptable. But then that raises the question of who authorised this letter to be sent in the first place! There is a huge stigma around those with learning difficulties including Autism as many people do not fully understand. We as a family are still only dipping our toes into the waters of understanding.

I simply can not understand how anyone would think it was ok to send such a letter! Can you imagine either been that ignorant or prejudice that you decide a whole group of people don’t deserve to live? Look at the people who pump themselves full of drugs and alcohol… they deserve transplants and a second chance at life but my boy when he is older would not?

Remember Emma, Mark, Martin, Ted, Tom and Warren? If not scroll back up and take a second look…

In 2007 Mencap published an article called ‘Death by indiffernce’ that highlights the fact there is an institutional discrimination within the NHS which leads to those with learning difficulties getting a substandard quality of care or in some cases none at all.

Emma. July 2004. 26 years old. Emma had a learning disability, this mean she often exhibited challenging behaviour and had difficulty communicating. Emma had Lymphoma B1 cancer. Her survival chance was 50:50. Her treatment was delayed on multiple occasions as she could not consent to it. No pain relief was given. The high court had to get involved and when treatment finally started palliative care was the only course to take.

Mark. August 2003. 30 years old. Mark had a severe learning difficulty and very little speech but he had his own way of communicating with his family. Mark broke his femur and had an operation which resulted in him losing a lot of blood (40% of it to be precise). The staff also failed to give him his epilepsy medication. He was discharged despite still incurrring pain and had to be re-admitted on multiple occasions. It took 3 days for the pain team at the hospital to see him. He died less than 9 weeks after his operation. The medical staff involved did not believe Mark’s family when they told them something was terribly wrong with him.

Martin. December 2005. 43 years old. Martin had a learning disability and no speech. Martin suffered a stroke and was sent to hospital were he contracted pneumonia. The stroke effected his ability to swallow so he could not take in food or water orally. He was placed on a drip which he didn’t handle well and often pulled out. On his second week in hospital it was established that the drip wasn’t providing him with the nutrients he needed. A speech and language therapist visited him repeatedly and advised he should be nil by mouth and other methods of feeding should be introduced. He was in hospital 3 weeks before they decided to intervene and by then it was too late. His veins had collapsed and a PEG feeding tube needed to be inserted but he was too unwell to withstand the operation. Martin went 26 days without food and nutrients before he died. The hospitals policy was to introduce alternative methods of feeding after seven days but they failed to adhere to it costing him his life.

Ted. May 2004. 61 years old. Ted had almost no speech and a severe learning disability. He was admitted to hospital with urine retention requiring a minor operation and remained there for 3 weeks as he suffered a mild heart attack and a post operative infection. His condition was assessed as concerning but the hospital pushed to discharge him back to his residential home. He was sent home and collapsed and died the following day. Following an inquest it was established that he had died from aspiration pneumonia.

Tom. May 2004. 20 years old. Tom had profound and multiple learning disabilities. Tom’s school advised his parents his was distressed but presumed he wasn’t happy there however they knew he was distressed because he was in pain and pushed for medical investigations. A consultant stated further testing was needed but it seemed to be an issue with his digestive system. No further investigation took place. Tom’s doctor decided against a PEG feeding tube because of fears Tom wouldn’t tolerate it. There was no discussion of alternative feeding methods with his parents. After school was over there was nowhere suitable for Tom and he was placed in a psychiatric unit who stated they would assess his needs and act upon them. They didn’t. Tom was losing weight fast and expressing some disturbing self mutilating behaviour in which his parents were sure it was him expressing his pain. Tom was moved to a social services residential home who admitted him to hospital. Tom had an ulcerated oesophagus. The hospital agreed to fit a PEG and the operation was carried out. Tom died before he could receive the nutrition he needed. So many different agencies look after Tom before he died and no actions were carried out resulting in his death.

Warren. September 2004. 30 years old. Warren had a severe learning disability and very little speech but could communicate well with his family. When Warren first showed signs of distress his parents called the doctor out on three occasions. His parents had their suspicions that he had a problem with his appendix or bowel but the doctor said no. A month down the line they called the doctor out again as he was having trouble swallowing and losing weight. They were told it was a virus. As he was not eating he was also not getting epilepsy medication as it was administered via his food. The doctor gave paracetamol and diazepam to calm his seizures. The next day his parents called an out of hours doctor out who told them to take him to hospital for a stomach xray but that nothing was seriously wrong. A few hours later they called him again and an ambulance was sent. Warren’s parents deceived a negative attitude towards Warren by the hospital staff. 2 hours after admission Warren had died. It was his mom who noticed he had stopped breathing. He died of an infection caused by appendicitis and a blockage caused by a paralysed bowel. Warren could not communicate but multiple people refused to listen to his parents concerns despite them knowing him better than anyone.

Remember them… they are only a small selection of people.

It took the deaths of Emma, Mark, Martin, Ted, Tom and Warren to bring about an inquiry into the inequalities within care that people with learning disabilities face.

Death by indifference: 74 deaths and counting…5 years on. Published in 2012 contained multiple case studies. Including the below remember them; Sophie, Kirsty, Lisa Barbara T, Daisy, Chantel, Carole, Kyle, Betty, Maria, Barbara D, Christian, Karen, Clive, Paul, Tina, Brian, Christopher, Ronnie, Kelly, David I, Michael, Alan, Sandra, Anne, Nicholas, David T, Sammy, Susan, Noel, Raj, Jasseke and 15 unnamed people.

Seems like a large number doesn’t it? Well almost 1200 people with learning disabilities die unnecessarily in hospital each year! Mencap have launched a campaign called ‘treat me well’ which advocates in making simple changes which will have a big impact to the way in which hospitals deal with patients with learning difficulties. I have signed up for as much information as possible in regards to the campaign so hopefully we as a family can get involved in making things better because let’s face it… it couldn’t get much worse.

Mencap, the voice of learning disability.

Posted in Dads Journey, Emotions

WARNING!!!

Vaccines cause adults!!!!

Anything in this world has people who are ‘For it’ and people who are ‘Against it’ this applies to everything… here are some easy ones
Pineapple on pizza βœ”
Milk in a coffee first βœ”
Free TV licence for pensioners βœ”

When it comes to certain things people often take a leap of faith in the hope that what they are routing for is for the overall good.
Then you have those people who are unable to take that leap who will cling to the edge of cliff by the smallest bits of earth.
Until very recently I have always ignored the ‘Anti-vaxxers’ but recently I have found the whole concept very engaging; forgive me if this gets a little ranty.

Jenny McCarthy; a world famous immunisation microbiologist has claimed… no wait. Sorry that isn’t what she is famous for. She is in fact famous for getting her cooch out for magazines. This obviously makes her thoroughly educated to be able to accurately dispute the effectiveness of vaccines. Well not the effectiveness so to speak but the side effects. She has continuously spread the disproven idea that vaccines cause autism. More specifically the MMR vaccine which coincidentally is given at the same age in which Autistic tendencies begin to show. Correlation does not imply causation!
Her son Evan was diagnosed with Autism in 2005 which she categorically claims was caused by a vaccines. Experts have since claimed based on his symptoms that he was misdiagnosed and he actually has Landau Kleffner Syndrome. Something in which she vehemently disputes.

She has claimed on numerous talk shows that Chelation Therapy has helped her son recover from Autism?! There is no cure for Autism! It is not a disease! It is a disorder meaning an irregularity, disturbance, or interruption of normal functions.
Chelation Therapy is used for patients with metal poisoning, certain vaccines contain mercury (not the same as fish) which causes for Autism πŸ™„ and C.T uses drugs to bind the metals in your body so that they are expelled through your body when you pee.
C.T is dangerous and if not done correctly can result in death!
1 in 100 people in the UK have been diagnosed with Autism. If there was such a cure this would be going down and if vaccines causes autism this figure would be much higher.
C.T comes with risks of kidney damage, heart failure or even death. I’m sorry but I would rather have an Autistic child than a dead child!

Lets take a moment to discuss Dr Andrew Wakefield Andy Wakefield. In 1998 he carried out a study of 12 children to try and establish a link between the MMR vaccine and Autism and published his findings in a medical journal called The Lancet. However his findings were completely speculative and had no fact based proof to back up his results and the results he did publish were embellished. To make matters a little more convoluted Wakefield had failed to disclose that he was receiving funding from lawyers that had been engaged by parents in lawsuits against vaccine-producing companies.
It took up until 2010 for the The Lancet to publish a retraction which ended up as a small, anonymous paragraph hidden in the journal, on behalf of the editors. I suppose its like any article weather its in a local paper or a national one, online or on Youtube etc the big headline is what you remember. Not the small apology in the back.
People never read the small print. Have a loan, 0% interest free… miss a payment and we take your soul πŸ”₯πŸ”₯πŸ”₯
Wakefield falsifying his results will forever be one of the biggest and most serious medical frauds in history. Scientists who publish their studies have an ethical responsibility to ensure the highest standards of research, data collection, data analysis, data reporting, and interpretation of findings; there can be no compromises because any error, any deceit, can result in a lot of cases with severe health implications for patients or even death.
In 2010 the British Medical Council banned Wakefield from practising medicine within the UK for repeated ethical lapses, including conducting invasive medical procedures on children that they did not need!!!
Conveniently Wakefield has also applied for a patent on a design for singular vaccines to replace the MMR one… You know because pharmaceuticals in where the money is at! πŸ’°πŸ’°πŸ’°

I can completely understand why parents of Autistic children can easily jump on this bandwagon. I still have moments in which I blame myself for Williams Autism; Could I have done something differently? Was is that 1 puff of a cigarette before I knew I was pregnant? Was my BMI too high to have a baby? was it because I had gestational diabetes? I know it isn’t any of these things but if I could just pick one to blame in those moments I blame myself then I think I would cling on to that because ‘Its just one of those things’ doesn’t really help placate most people and sometimes not even us.

I have done a lot of reading about celebrities and their very public views on vaccinations, I have never been someone who put much thought in to what celebrities endorse and what they don’t however I know there are millions of people out there that follow their celebrities like religious idols. Even if they are the Jenny McCarthys of this world.

Whilst searching for celebrity opinions I found that Kristen Bell (Veronica Mars/Gossip Girl) had some really wise words regarding her decision to vaccinate her children published in The Huffington Post back in 2015.
‘I couldn’t rely on word of mouth, facts were my friends and it’s been proven that vaccinations work and that enough for me to make my choice and let all other mothers know it is safe, It’s important and much bigger than emotions; it’s the truth.’ πŸ™Œ

Coronation Street recently ran a great story line about the potential ramifications of not vaccinating our children which was brilliant to see played out and hopefully opened up some eyes about not only what could happen to your own child but others around them.

Anyone that knows us personally will know I am and always have been a very opinionated person and in case you haven’t clicked on just yet, I have super strong opinions about vaccinations. I completely understand if you want to put your own child at risk. Actually scratch that, No parent should ever knowingly put their child at risk!
By choosing not to vaccinate, you are not only putting your own child at risk but also those they come into contact with. You wouldn’t go and see a new born baby or elderly relative if you had the flu or a tummy bug but if you haven’t been vaccinated you could potentially be carrying something much much worse.
In 2015 there were more than 140 thousand deaths from Measles worldwide. Most of these deaths were in children under 5 years of age. Would you want your child to be on of those statistics? or be the cause of someone else child being one? I know I would never forgive myself either way.

When the vaccine for Polio was released parents queued up for hours and hours to get one for their child… I imagine it been a bit like trying to get into ASDA during this lockdown.

The president of the USA advised his stance on vaccinations during his presidential campaign (and he still won😳) he didn’t actively stand against vaccinations but advises against full doses. Advocating for smaller doses over a longer period of time.
To slightly misquote one of Greenday’s worst songs (but best albums) American idiots even swap bodily fluids with strangers to purposely get their children ill. Hello!!! HIV!!!
Now 10% of parents in the USA skip certain vaccines and 1% don’t get any at all.
Measles was once eradicated in the USA. In Minnesota more of the population in that one state has contracted measles than every other state in the USA combined. This state was heavily preyed upon by Andrew Wakefield and other Anti-Vaxx activities due the large amount of ethnic minority groups in the area. Wakefield preyed upon parents particularly within the Somali communities. Meeting privately with hundred of Somali parents and barring journalists and other medical professionals from attending. Since these meetings the rate for vaccinations within that community dropped from 92% to only 42%
In 2014-2015 a Measles outbreak infected 147 people across seven states, Mexico and Canada. High school students were sent home because of infected classmates.
One patient who was unknowingly infectious visited a hospital and exposed dozens of pregnant women and babies, including those in the neonatal intensive care unit. Another adult patient was hospitalised and on a breathing machine for three weeks.

Dr Bob Sears, famous for his dangerous views on vaccinations has been quoted saying “Vaccines don’t cause Autism except when they do”
This man who should be an ethical man. He has taken the Hippocratic Oath – I will prevent disease whenever I can, for prevention is preferable to cure.
He wrote ‘The Vaccines Book’ in which he recommend alternate Vaccination treatments and schedules despite there been no proof of this been effective. His book has brought him in a revenue of 20k a month since publication. That’s over 2 million quid!!!! He obviously has no ulterior motives… πŸ€‘πŸ€‘πŸ€‘ Wanker 😑

Dave’s opinion – Yes he is allowed one occasionally.
I feel vaccinations are a pivotal part of our healthcare system. I understand that there is such a thing as ‘herd immunity’ which helps protect those who can not get vaccinated for legitimate health reasons. Those who have weakened immune systems are unable to get certain types of vaccine and rely on ‘the herd’ to keep them alive. However this only works if 19 out of 20 people have been vaccinated.
The ‘Wakefield’ study was proven to be falsified and the “good” doctor was disbarred however people still quote him as the pioneer that established a link between the MMR vaccine and Autism when there is in fact no link! He goes and does public speeches in America about it and spreads his lies putting more and more people at risk every single day.

There as two types of English language when it comes to scientists and doctors; the main English language and the medical English language.
‘There is no evidence of a link between vaccines and Autism”
Read into that statement as you like but one scientist trying to explain it also said
“There is no link between vaccines and humans not been able to jump off a cliff fly

I feel celebrities shouldn’t be using their influence to sway people against vaccinating their kids. Jenny McCarthy is a fucking idiot. Will she be held accountable if someone who believed her bullshit let their kid catch something and die? Is that grounds for an involuntary manslaughter charge? Would she be accountable?
I can not quote a pro-vaxxer like Marie but in my opinion everyone should be pro-vax. Why as a parent would you be against something that could save your child’s life?

Don’t get me wrong I’m the bad guy who takes William for all his injections and has to watch him become distressed and fight sand cry. We then have the delightful couple of days which he is out of sorts (aka possessed by the devil πŸ‘Ώ) but… a couple of days is nothing in the grand scheme of things.

I would rather have a couple of bad days than no more days.

Posted in Emotions

Two faced

these are the faces of autism

and so are these…

It took me a long time to be able to tell people that our child has special needs, that our child has a developmental delay or that I look like shit because I was up until 4am just laid net to him on his bedroom floor.
There is no shame in having a child with autism or a child that hasn’t hit their milestones when their peers have but there seems seems to be this stigma around it or at least that’s how we felt.
I share many stories about William (with any one who will listen) and always explain he has additional needs but i’m not sure why. Why do people need to know? why do we as parents feel the need to explain their behaviours? Does Tom, Dick or Harry need to know?
I suppose any parent in our position will tell you that everyone on the outside of this not so elite circle will tell you that they know a person with autism and they’re fine or they know someone who was non verbal and now they speak all the time etc etc etc… blah blah blah

Autism is a spectrum which means it covers a range of conditions so although autistic people share certain difficulties not one person who has autism is the same as another who has it. This means that they need different levels of support. Most people on the autism spectrum will learn and develop but only with the right sort of support which if you have read our previous posts can be difficult to get.

Today was a difficult day. It started at about 1am in which William was awake and having a full meltdown so I did my mental check list

  1. Does his bum need changing?
  2. Is he thirsty?
  3. Is there something in his bed that he doesn’t like?
  4. Does he want a cuddle?
  5. Does he have a temperature?

At 1am the answer to all of these was a definite no. Number 2 resulted in him shoving his juice bottle into the side of my head and number 4 resulted in him hitting and biting me. I tried everything to calm him and by 4am we were laid on his bedroom floor just staring at each other. I couldn’t touch him and I wasn’t allowed to make any noise but he was at peace for the first time in hours so the back pain this morning is most definitely worth it.

Fast forward to a very sleep deprived mum this today and i’m not sure who has cried more. Me or William?

I understand this is a little bit of a ranty post but I just like to speak or when that’s not possible type and those that know us personally understand how angry I get when i’ve not slept πŸ’€

William is currently in his room destroying everything that is still standing so i’m hoping he will soon tire himself out but that’s as likely as us winning the euromillions!

I refer to William quite often as a psychopath... when he hits me and laughs, then I tell him off so he fake cries and then laughs again... honestly he is such a character and a master manipulator; when Dave wakes up he will start crying. Dave runs in 'is he ok?' 'how long has he been like this?' he will scoop him up and cuddle him and William will just happily lay there with him. I can't help but feel a little jealous. They have a beautiful relationship and it stings a little that William doesn't have that kind of bond with me. He never hits Dave. Never bites him. Its it because I am the one that is here more? and his time with his Dad is more precious to him?

I sometimes think it may be because I struggled to bond as well with him straight away. As many of you are aware it took almost 2 years for me to admit and be diagnosed with postnatal depression. I loved William before he had even entered this world but struggled to adjust to such big changes in my life.
I went from working full time and my life been my job to been on maternity and finding out my office was shutting down. Then as time went on I started to realise William wasn't like children his age. It was tough and I think I hid it well for quite some time but did William pick up on this?

I think Family life is never what people picture it is. Movies, TV, books and social media put unrealistic expectations on people to have a perfect life and it has taken me a long time to realise there is no such thing! My living room is a mess and covered in dog hair and toddler snot so fuck you Mrs Hinch with your baby, dog and immaculate house! Although I do love the products she uses πŸ™‚
Fuck you Kylie Jenner with your washboard abs 4 weeks after giving birth! In fact you know what, Fuck you Kevin Systrom & Mike Krieger for creating a platform in which pictures are worth a thousand words and every single word is a fucking lie.