I Am...Autism

I Am... a look into an autistic mind. www.bellybuttonanda.co.uk

I Am...

I asked Ryan to complete the following sentences. I gave him the two words in bold and he completed the rest. It gives an insight into his Autistic mind. When you ask, say the two word prompt and try to take the first thing that they reply.

I am...alive.

I wonder...what's in space.

I hear...sounds.

I see...things.

I want...eternal life.

I pretend...that I am happy.

I feel...nothing.

I worry...that people will find out.

I cry...every night.

I understand...that humans shouldn't exist.

I say...offensive things.

I dream...of a time gone by.

I try...to smile.

I hope...it will all be over soon.

I am...

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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...

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 previous 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...

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...

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...

There's a Panda in my Bellybutton

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