Skip to main content

Bang Head Here


There are only two times when I feel stressed: 

Day and Night.

This was the shape of things to come over the next 3 years. I spent more time at the school dealing with Ryan’s inability to cope and increasing violence (he had just turned 4) than I did at home. I was frightened every time the phone rang, dreading what had happened this time and became increasingly embarrassed each time I turned up at the school to find out what he had done this time. We were the 'English family' in a small rural Welsh village.  Everyone knows everyone and everyone talked about everyone.  Ryan had quickly become top gossip.

Dadi Skilts & I slept on different shifts and often in different rooms as Ryan had no need for sleep. Sleep was for the weak. DS & I became a formidable tag team of good cop/bad cop and had to synchronise our cycles to be sure we didn’t PMT at the same time. (Permanently Meltdown Together). We learnt restraint techniques as Ryan was becoming bigger and stronger. To be honest the 3 years, 2005-2008 are pretty much a blur of tears, tantrums and sleep deprivation, from us as well as Ryan. We all simply struggled.



Autism disturbs sleep patterns



Then a new headmaster started at the boys primary school. A young man in his first headship; he cared and understood. He was the first person I had met that didn’t think all Ryan’s problems were down to bad parenting as we had been led to believe thus far. He had a young Uni’ friend who had an interest in and was specialising in young mental health. He asked me if I minded Ryan meeting him. Minded? Why should I mind. Everyone else thought he was a freak show so why not parade him in front of a few more. Seriously though, this was the beginning of a long road to finally discovering that Ryan is in fact Autistic.

Comments

Popular Posts

Missing Education due to Illness

The Importance of Attendance If you read any news articles on education, correspondence from your child’s school, or are simply clued up on parenting then you will know the importance of school attendance. Schools place a great deal of focus on targets and will often offer incentives and competitions to encourage and increase attendance figures, but what if your child has a serious illness. What happens if they really are not well enough to attend school. What happens then? Attendance targets at Ryan's school are currently set at 95% attendance for the school year. Therefore realistically your child can only miss 10 school days due to illness. Medical appointments such as GP or Dentist do not count, but you are encouraged to make these appointments outside of the school day where feasibly possible. If your child consistently misses school, even if it is only one day a week, that equates to 39 days over the school year. Even missing one day in a week results in pressure on the ...

Questions to ask after Cancer diagnosis

Cancer Sucks I have shared with you Ryan's lymphoma journey where we have talked about the ups, the downs, the protocols for drugs, the side effects, but I realised recently I have never shared the questions. This post is all about what to ask when you receive a diagnosis of cancer. Receiving a cancer diagnosis is never ever going to be seen as good news. It can never be dressed up or made pretty. It is devastating, it is gut-wrenching, it is life-changing. There is so much information to process you will not think of the questions you need to ask or you will have hundreds of questions you want to ask all at once. These are just some of the questions you can ask once you have processed the news, in order to gain a better understanding of your fight ahead. General Information What type of cancer do I have? Where is it located? What are the risk factors for this disease? Is this type of cancer caused by genetic factors? Are other members of my family at risk? What lifestyle c...

Chemotherapy Cycle 5

What is Normal? With this being our penultimate cycle of chemotherapy I have had several family and friends comment to me “oh I bet you can't wait to get back to normal”. This has really thrown and upset me because it seems to come across that they have failed to comprehend the fact that we have 2-3 years of maintenance ahead and at least two more general anaesthetic surgeries. Not to mention physiotherapy as it is expected Ryan will take 12+ months to heal from the effects of being poisoned from the inside out. Normal is long way off yet. While everyone else appears to all be getting excited that Ryan is coming to an end of his chemotherapy protocol treatment, Ryan himself is becoming more and more tired with the cumulative effect of the onslaught of the chemotherapy drugs and is spending long periods of time in hospital after each cycle with infections due to his impaired immune system now as a result. Ryan is far from excited. Ryan is exhausted. We still have one more cycle t...

Cancer Survivor Story

Cancer Doesn’t End When Chemo Does Ryan finished his chemotherapy treatment on his brother's 18th birthday in May 2017. The last two years and eight months were a blur of stress. Yet coming to the end of treatment coincided perfectly with Cancer Survivors Day on the first Sunday in June, each year, so what better way to mark this day than with our own survivor story. Ryan's weight at diagnosis was a staggeringly poor 42kg. He had lost so much weight not being physically able to eat due to the tumour in his throat, but with thanks to his own determination and the feeding tube that he had. Ryan's weight as we start his final chemo cycle....drum roll....prepare yourselves.... was an amazing 57kg. A year on in 2018 and despite going through treatment for the second time after relapse. Ryan weighs an impressive 65kg. Chemotherapy Cycle six Started on Monday, 1 May 2017 for hydration and the week went well without any drama. His final chemo took place on Friday, 5 May wh...

Sepsis and Cancer

Epstein Barr Virus EBV positive extra-nodal NK/T cell non-Hodgkin lymphoma nasal type, Stage 1E . It's a bit of a mouth full but this is Ryan's official diagnosis. It is a rare lymphoma, but extremely rare in children. It is extra-nodal in his tonsillar area at the back of his mouth in the oropharynx or Waldeyer's ring. Caused by the Epstein Barr Virus that is usually responsible for Glandular Fever.  I have shared my full story on several chat forums in the hope that there is someone with the same that I can connect with for support. Of course, I do not wish this on anyone, however, if there is someone else going through, or has been through the same I would like to connect with them. Thank you to everyone that has shared messages with me so far. I really appreciate the help and advice you have given me. I wish each and every one of you all the best with your own battles. Sepsis   Ryan had a percutaneous endoscopic gastrostomy ( PEG ) tube fitted on Monday 3rd October 201...