A father’s voice

So, I asked my dad to contribute to this blog and here it is:

Where do I start?

I just don’t know when I start talking about my HERO in life, my son Christos. I am blessed to have him in my life; I admire him as he is.

When he was diagnosed, I never had a clue about Autism or the road ahead but I was very quick to learn, accept and help him as well as help others to embrace him with no regrets, sadness or disappointments. The doctor tried to explain what the road ahead would be like with him and gave me advice that I will never forget: ‘Try and keep them happy’. This became my mantra, my motto and it has been, and will be forever, cemented in my heart and soul for my little boy.

He is my son, gift of God, and I was determined to take him as he is with open arms, with all of my heart. After he came along, I saw another side of myself, a chapter of my life that would take over the book of my life. I love him so much, I may not be there with him all the time but I live with him all the time in my heart. My little daughter has written enough and I agree with all she says, she is an adorable girl who also encourages me every day to live my life; they both made my life worth living.

The beginning of my life with Chris was mystifying; it’s difficult living so many years and then having this challenge thrown at you. But we as a family always stood by him; I always thought that if we don’t do the right thing for him, we couldn’t expect others to treat him right. Every parent loves their kids, it’s what a parent does, all you have to know is that we, as parents, have a duty to our children and we need to do it with truth and honesty in our hearts. Their whole life starts from home; we are their first image of men and women, their example of people, family, lovers, parents, husbands and wives. Parents need to understand that once you become parents you become a role model, your family is you and even though it can be impossible at times to maintain the balance, keep it simple in your heart without looking at it as a duty but a happy and useful lesson in life.

I remember the times spent driving for an hour in the early morning with him for his therapies, from one place to another, because we would do anything that helped him, we would go anywhere. We took him overseas for brain scans and many other tests; they all helped. We changed his diet; I developed my own recipes with organic ingredients to match his pallet, his likes and dislikes. I adapted the few dishes he enjoys to the GFCF diet, and added a few of my own. When conjuring these up I make sure to include all sorts of food like lentils, meat, fish, vegetables, so he can get all the vitamins and proteins in a round-about way. I boil meat and vegetables before making his soup because he won’t eat them separately. I always respected his choices but tried to cheat a bit with slight inclusions which he would not realise as much so that he gets a balanced diet.  This wasn’t easy as he has a heightened sense of smell and taste, but I never wanted to force him. His chicken nuggets are made from scratch every couple of days and are frozen. Over the years I’ve been adjusting the recipe to include nuts, fish, meat, vegetables; however, after a lot of experimenting I found that a touch of curry caught his attention. He loves curry and the taste and smell always intrigue him, so even if he doesn’t eat it, he will try it and that’s always a pleasant surprise. He is a curry lover and that is a bonus as it gives me the opportunity to provide him with the best spices that I blend in. I use ginger, garlic, turmeric and other, always fresh, spices which I grind into his food. I’m happy I can be creative for him, cook a bit and make these variations to satisfy his taste.

I try to find time to play with him outdoors, mostly tennis and football where he also plays with my patience as he will try anything to get out of it. This outdoorsy, sporty hour or so is very pleasing; we share the experience, exercise and interact brilliantly. Over the years I see his cooperativeness and acceptance developing and increasing. He accepts changes more calmly now with not that much irritability; it doesn’t sound like much but it’s so pleasing.

We take on roles of friends, relatives, playmates gladly when time (and his mood) permits. He is our story and priority in life; I take it day by day, as it comes, the good and the bad. Recently, we went to seek advice from a specialist for his future plans, what we do on his behalf as he is turning 18 in two years. He will slowly have to learn to be more independent. I’m sure he will manage it; I trust my son can do anything. We are facing this challenge now, another chapter, we need to have a future plan for him and we are in this process now. What is best for him? We would do anything; pave a way so he could do something worthwhile to him and to the world. Create an environment where he could seek some kind of an employment whether full-time or part-time. We have to analyse his skills, strengths, abilities and develop them in a special way so that they can be used to his advantage.

You have to remember that this is our reality, this is our “normal”, and there are no comparisons.

Dad and Chris

I can recall many times where he would panic because of an ignorant stranger while waiting in an airport, shop etc. but we were always prepared and very quick to respond. We can’t change the way others see him overnight. Some take a while to realise, some don’t want to and some are just too ignorant. But I want my son to be able to adapt, I want him to be accepting and that is how we raised him.

It’s easier to make a child with autism to adapt than trying to explain and teach certain people.

I do notice and appreciate that some are becoming more aware of these circumstances. Kids are educated (to a certain extent) and taught in schools to include special needs children in mainstream education channels, their lunch breaks as much as they can.

I have learned and will learn so much from my son. Life for him is so simple and happy, in his own world, his own universe that we can only peak in once in a while. His demands are innocent and very genuine. He has his own routine, his own ways and his journey through learning, communicating, and compromising is simply beautiful.

It is a blessing to live with him and see him grow.

We decided very early on that we would never ever want to use medications on him. No matter how difficult, I trust we could get by with him. I never want to “tame” him or control him through medicine. I know, and I have met people who simply have to use medication on autism, but we are blessed because we can converse and negotiate with Christos.

Chris has a triangle of love surrounding him, it’s us; his mum, who dedicates her time immensely, his loving sister and me. He is surrounded by love; his grandparents, aunts so on. They all make sacrifices for Chris. His school contributes so much too. As mentioned in previous posts by Dora, he just wants to adhere to a simple program, his daily routine. We have worked very hard over the years to analyse and incorporate his wants into that routine. It is important to fulfil his need for a schedule to the best of our abilities, always keeping in mind that we need to slot in daily changes; a flexible routine. Comparing our children to yours is impossible, unnecessary and not useful. Even if they are on the spectrum – no two kids present the same. They are our children, we are proud of them. They have their talents, capabilities and we cherish them.

We live in a world where right and wrong, justice and injustice and normal and abnormal are arguable. So remember that some come to us for a reason, some for the season and some for a lifetime. We should accept them accordingly and cherish them for all they give to us. Be happy with your life, and fight for your happiness. For myself, as I imagine it is for all parents of autism, my happiness would be the happiness of my kids and their wellbeing. Always remember this, and don’t let the turbulence keep you from enjoying the journey. Life is too short to be unhappy. We all have to relish the good times and learn from the hard times, either way, accept life with open arms. We as families of autism have learned to value the small joys of life; like when they learn to speak, or the first time they write their name unattended, the first time you get through them. You learn to appreciate your children for the small things that make them who they are rather than compromising to societal standards. We, as a family, are charged with the task of teaching Chris all these little components for a happy living.

I want to conclude by saying that children with special needs, learning disabilities etc are my heart, I want to stress how important it is to make them feel equal, cuddle them and stop trying to adjust them to society’s unreal, outdated expectations.

To all the families out there who are on this journey, repeating the first piece of advice I heard before starting this journey “Keep them happy”. It’s a way of life. My thoughts and prayers are with you every day.

It is my life’s mission, along with the support surrounding us, to keep my son, and my family, happy to the best of my knowledge and ability.

Yep, my dad’s awesome.

2 thoughts on “A father’s voice

  1. Pingback: 2014 in review | Just a boy

  2. Pingback: 5 questions about autism and how to ask them | Just a boy

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