Skip to main content

Everybody is Different



Since starting this blog I have wanted to talk about my eldest son Owen, but have not known how to go about starting a post about him. As a big believer in fate the perfect catalyst presented itself to me earlier this week and delivered me the perfect post.  

Before I present that post I just want to give a bit of background to a tale of two boys.  Two boys that do NOT get along.  We all know siblings fight but our house on occasion has been utterly heart-breaking with the level of dislike and resentment that Owen has for his Autistic brother.

Soon after Ryan’s diagnosis I purchased a book titled ‘Everybody is Different. A book for young people who have brothers or sisters with Autism’ by Fiona Bleach. I brought this book for Owen in an attempt for him to better understand the difficulties that Ryan faces.  It is an excellent book and very well written, Owen did read it all with me, but overall it has not helped him to accept Ryan’s differbility. He resents too much the disruption it has caused all of us over the years.

On Tuesday July 1st I received the following email forwarded to me by my father in law from his partner. My father in law had sent her a link to our blog as she had not yet seen it. This is what she sent to him in reply:

My heart bleeds for Sarah, Duncan, and my darling Ryan, what a tragedy for the family, it puts so much pressure on daily living,

I must say Duncan is a wonderful father, he is so calm and loving to his boys. Poor Sarah, finds dealing with Ryan's medical problems very stressful, as all mothers do.

Ryan is a very lucky lad having such wonderful parents, (unfortunately Ryan doesn't realise how lucky he is) because I know other families in this situation (the husband just walks away from it), leaving a single mother to cope with all this stress.

You should be so proud of your son, he is one on a million, coping with his own health issues, then all this traumatic stress on top of it wish we could do something to help.

Now this truly touched me as I am sure you will understand and it took me a while to process and formulate a suitable response a copy of which now follows that I believe perfectly sums up exactly what I wanted to say about Owen all along.

Thank you for sharing your emails with me it is truly comforting to know we have support from literally all around the globe.  There is honestly no need to feel sorry or heart-broken for us.  We know no different and have it relatively easy compared to some. 

The one person I do feel for however, is Owen. He has missed out on so much because we have had to focus our attention on Ryan. I know that he resents Ryan's Autism and struggles more than any of us to make sense or understand it. He has had to witness meltdowns and be laughed at in school because his brother is a 'freak'. Yes that word has been used many times along with regular occurrences of 'Retard' which has to be one of the most hateful, spiteful and down-right narrow-minded of all bullying words possible. 

I know that Owen doesn't believe us when we tell him how proud we are of him. His academic achievements continue to astound us and he has been passionately playing football at a serious level since he was four years old. Owen has been playing for 11 years now and shows dedication and commitment beyond anything we could have ever dreamed of. He is loving, caring, well mannered and doesn't believe in any form of discrimination, racism, homophobia etc at all, and has in fact been involved in confrontations in school where he has intervened and stood up for people facing these criticisms. 

I suppose, partly, he doesn't believe us because words can't really describe how proud we are of him.


Both of my sons are completely amazing in their own completely unique ways. What more could I really and truly ask for?

Fair isn't everyone getting the same.

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...

Worrying About the Future

  Worrying About the Future. Ryan said to me recently. "Childhood gave me Autism. My teens gave me cancer. What will adulthood bring?" Big worries for someone so young. So much pressure and conditioning are placed upon us about the importance of education and the set path that the majority of us will take through the system to university and/or the job market. What happens if you do not follow that path or miss so much education that the path is no longer open to you. How do you plan for the future? What options are there available to you? Ryan was excluded from his primary school in year 2 and I home schooled him for a year while we worked with the Educational Psychologist to find a placement that would suit his complex needs at the time. Due to his speech, language and communication difficulties the decision was made to withdraw him from Welsh-medium education and focus on English only which meant our choices were limited in the area of Wales that we call home. We...

Peritonitis

Emergency Surgery On the morning of 25 October 2016 Ryan was complaining that his PEG feeding tube was unbearably painful. He was due for a review anyway that day at Velindre Cancer Centre and a PEG specialist nurse came for to look at Ryan. She said the site was a bit weepy and raw, she thinks he possibly caught or pulled it in the night. She is confident that it is fine and she also gave it another good clean.  A week on and we are back to square one. The district nurse came out on Monday 31 October 2016 to advance (turn) the PEG tube as is needed each week after the first month. The nurse was unable to move the disc and caused Ryan an incredible amount of pain. We ended up having to go to the Teenage Cancer Trust ward in Cardiff, where two gastro nurses met us and spent the best part of an hour, torturing Ryan while they 'forced' the PEG to move, which they eventually did. Or so they thought.  The following week, 7 November 2016, the district Nurse came again to the ...