Written by Kevin Bugler
Marosh was born June 2nd 2010, I was diagnosed with Nasal Pharynx Cancer in Feb/March 2011 and at the same time, my Wife was Pregnant with Samuel who was born August 31st, 2011. In May I had a neck dissection surgery followed by six weeks of Chemo and Radiotherapy which ended in mid-August 2011 (just before Samuels Birth).
Happily I am now 5 years clear of Cancer since August 2016 but I am yet to be discharged by my Oncologist as I have breathing difficulties. I am having continuous tests, but so far I have been diagnosed with Asthma and Emphysema but with inhalers, nothing has improved, and in fact, it has got worse, so I am due to go to a respiratory hospital in March this year after I see my Oncologist in February.
Marosh was diagnosed in August 2013 and Samuel was diagnosed 1 year later in August 2014. To be honest with Marosh in his early years it was good for me and my recovery that he was in his own little world either bouncing in his Tigger bouncer for hours or running around in circles so I allowed it to happen so I could relax more and deal with my health issues.
I went back to work earlier than my Oncologist wanted me to which was October 2011 (I was advised to recover for up to 2 years) as I love to work and I wanted to get out of my house. The company I worked for was very good to me throughout my illness, but due to loss of business and two restructures I kept my Job on the first restructure but chose to leave on a voluntary redundancy on the 2nd restructure in March 2011 (after Marosh’s diagnosis and before Samuel’s diagnosis). I got a new job which I actually started before I left my previous job as they needed my experience urgently to take in a new contract.
I loved my new job and my new start in my career where no one knew too much history etc. However, after August 2011 Ivana and I now had our thoughts realised with the diagnosis of our second boy Samuel, to be honest, although we kind of expected it, it still knocked us for 6. From this point on I did not know what I wanted to do at all, so we carried on me working and all the while my wife struggling on her own with two boyz aged 3 and 4 acting at times as if they was teenagers like Kevin & Perry. I did not know or was blinkered to how my wife’s life had become a prison until one day I witnessed my wife sitting on the sofa with her head in her hands, crying, while the boyz ran circles around her literally as if they were devils. At this point, I said I would stop working as my wife and my boyz needed me to give a little more support.
I left my work March 2015 and to be honest I have never looked back, yes I miss work and the people, friends and colleagues but I was going to work while the boyz were asleep and coming home rarely before they were in bed so I was missing everything and they was missing me. Soon after I gave up work Marosh’s speech and behaviour improved to his mum even the school noticed it at this time.
As far as I was concerned, I am not one to sit and do nothing. Before I had left work I became a committee member of the Hillingdon PCF and I started to run their website from March 2015 and now I am the Chair of the Hillingdon PCF as well as continuing to run the website. I also need to support other dads who are caring for Children with disabilities and SEN. So, I started a support and Social group called Hillingdon DADS in September 2015.
Anyway, that’s enough about me I think apart from I feel I should say that I started Hillingdon DADS to try to reach out to dads that will be in the same or different dark places as I had and to let them know they and we are not alone. We dads don’t like to open up. Especially if we have children with disabilities or SEN. It’s hard but we have a very diverse group of men from various backgrounds with very little in common apart from our children and yet when we meet the conversation doesn’t stop and we all even manage to even laugh at times and even cry (as we do) when we do want to share our experience or rant without judgment.
My eldest boy Kane, is a very clever boy and I am so proud of him. I can’t take any credit to what a great young man he has become as his mum, and I parted many years ago. I tried, I was not part of his life for too many years, but I am blessed that I have finally been reunited into his life. Although his mum and I don’t get on, I have to say Kane has turned out very well. He is currently in education in a Dutch University in where he is studying many aspects of Maths. I could go into more details of his education and how great he is but I will probably miss many and he will pick me up on it as he is a perfectionist in every way. So, probably best I say that what first made me proud when we reunited when he was 17. He informed me that he had left his school in order to do his A levels himself at home without any tutoring. He only had to attend the exams at his old school which he excelled in all of them. He is the only man alive that I won’t argue with as he is the only man alive I know who is probably more right than I (lol).
Marosh is what I would call a stereotypical HF ASD child with his attitude, behaviour, play, diet everything. If you are even slightly aware of ASD you would look at him and say is he on the spectrum. He has an EHCP at school and a fantastic one: one and although occasionally I have been called in a few times to issues he has had at the school he is getting there. His school love him as they know although he has some extreme behaviour he hasn’t got a bad bone in his body and he loves everyone. There was one time I was called into the school as Marosh had an incident, but when I was told I have to say I was a little bit proud, basically Marosh had a Meltdown and decided to run out of his class which he has done a few times but on this occasion. When he left the classroom, he slammed the door and proceeded to put a chair up against the door and hold his class hostage. I couldn’t hide my smile when I was being told and to be honest, I think they understand that although it is not right, it did show he had initiative, and he was a thinker! To me means far more than him having one of his many meltdowns.
I have a way with Marosh as he seems to be very similar to me and I kind of know what he is going to do before he sometimes does. We have great conversations even from the age of 3 we had moments where I felt I was talking to myself.
Samuel is the opposite of Marosh as in he is very quiet and although he is verbal he is very hard to understand which is multiplied with the fact I am a little deaf. I must admit I do struggle with Samuel more and I worry for his future more as I feel he will allow himself to be unheard even though he has plenty to say and he will get lost in the crowd. I am trying to toughen him up a little in his confident but that has started to backfire with his aggression to his mum, so I am trying other ways to make him confident by telling him he can do whatever he wants and as long as he likes it, it will be great. So far he does seem to be improving, and he is talking more and more (still not clearly but at least he is confident). We will still have trouble ahead as he still won’t defecate at school as he is embarrassed to ask for his bum to be wiped and the children laugh. Samuel also has an EHCP and a one:one which is still new but he seems to be a little better. To be honest, Marosh probably needs more behaviour control from his one:one whereas Samuel needs to keep focus while at school, again showing the differences.
When they are both at home I allow them to be a little more extreme in the hope they will have a place to release their anguish and frustration so they will do less in the outside world. This seems to work at least to some degree as they are a lot better behaved at school than at home, although we wouldn’t want to take them to a restaurant as their diets are so void from that of restaurants so it is not even worth the effort. We still try different foods but both like different foods and when you think you have one sussed he then changes his mind, we will not give up trying, and one day we will get somewhere even if it’s not exactly where we want to be.
All 3 of my Boyz are amazing and unique, and I am such a proud dad. People have asked me what it is like being a dad of an autistic child. I just say that every day they break your heart, but every day they repair your heart twice over and as long as you remember they do not mean anything through a meltdown but when they are calm they mean every word then that is a start to the understanding. I know my boyz love me unconditionally and they know I love them, Samuel may not know what love is fully, but he knows I will look after him, so it is what it is. I have been known to shout at them when they are both kicking off, or they get violent, I know shouting doesn’t work, but it is a way of venting for me after I’ve vented I talk to them calmly and slowly until they say they understand. Of course 5 minutes after they are at it again.
Still, since I gave up work Marosh and Samuel have made me a Dad and that is all I have ever wanted to be and more than that sometimes I am just as bad as them and loving life and their world as it is a wondrous magical place where there is no wrong or right only doing. I am aware I haven’t mentioned my wife much, so I have to say that she is my world and an amazing Mother. If you add up all the points to my life since 2010 and then I allow you to realise that my wife Ivana is only 28 years of age and she has had to go through me having cancer, Marosh and Samuels issues she deserves much better and the other reason I gave up work and I do as much as I can for my boyz is to try and give her some resemblance of a life back as when I was ill she gave me reasons to live too!
There is so much more I can say, but I fear I may repeat and ramble and or bore you but I will end by saying that a diagnosis is not the end but only the beginning of a very interesting and beautiful life if you allow yourselves to see through your child’s eyes and how they see everything how it should be which is why they react when we change things in their world.