The A word – A stands for Autism. People roughly know what autism is, but still, it’s a lot of false stereotypes about the spectrum out there.
As humans we are all different, people with autism also are different. Their autism might have some similar traits, sometimes we can notice some of the behaviour which is similar but at the end – If you know one person with autism, you don’t know the spectrum, you know just one person. Simple.
Today I would like to share with you a few lessons which I learned from my son. He will always be my hero. I know that he will never be fully independent. On top of his ASD (Autism Spectrum Disorder), he also was diagnosed with developmental delay. It’s a harsh reality of many families out there, but is “harsh” a right word? I wouldn’t say so – You Were Given This Life Because You Are Strong Enough To Live It. That’s what parents do. Isn’t it?
Lesson #1- Behaviour is communication.
When children want to express themselves, to let us know about something, they are communicating with us, they talk, if they are babies – they cry. How do you communicate if you are none-verbal? If you feel unwell, hungry, if something is itchy and you can’t verbalise it, you can’t write, show, use sign language or any alternative communication? Adding a lack of Theory of mind – which is a way of understanding that whatever you think or feel is not understood by other human beings. Some people with additional support needs are wired like babies before 3 years of age – their brain is not developed enough to see other people as an independent human being – they assume that you will know what they feel or need. That you are an extension of their mind.
Lesson #2 Being a parent and a detective.
Being a dad of a child with ASN is pure detective work. I can see how my son’s mood is changing, I can recognise some oh’s and ah’s. Seriously, I know that something is not right, that something is developing health-wise or he’s catching something. Sometimes is harder than I can anticipate. I know that something is not right, he might be in pain, he might feel unwell and I don’t know what’s going on. It’s scary. With an ear infection, toothache, tonsilitis, tummy ache, constipation, you name it. What would you feel if your child would be in pain and you would not be able to know what’s happening and where is the source of this pain? How to support your child, how to administrate meds if you don’t know what’s going on? It’s a part of our life.
Lesson #3 My son will never be independent – so?
So what? It took me some time to go through the grief process. From denial, through anger, asking why us, why my son, back and forth till I finally accepted it. Took me some time and I know how hard is to accept something like that. We want the best for our children, we would shield them from anything, but sometimes we just can’t do much.
But said this, I need to admit- my heart got filled more and more with love to every child and parent around the world. I take what fate is throwing at us, with a smile. I realised that we, as a family have a lot. Healthy kids, parents, job, security, each other, we do in life we love and we able to make some of our dreams come true. Is that really a hard life? Instead of focusing on what we lack, we are focusing on what we got.
Lesson #4 Each step is a huge leap
In time, you learn not to judge, not to compare. This is a skill, without it, you can get really depressed, understanding is a key to mental stability. Without mental stability, you can’t support your child. For us, each step, slightest move forward, new word, each discovery on communication is a cause for celebration. It is always a BIG DEAL. Sometimes it is we who have to learn, discover, understand our children communication. Patience is key. I still remember like yesterday when we walked to the Sick Kids Hospital for an appointment and my son decided to stop on the sidewalk. I sat with him on the curb, waited with a smile, spoke to some people asking if we’re ok. You can find this story and others in my book The A Word on Amazon.
Lesson #5 Life is too short
This is as simple as that. When our son was diagnosed and we started to look around for support, we noticed that some people around us started to be less and less in touch. When I stopped visiting my pals as often as before, due to this whole new situation, I lost many friends. People weren’t interested in talking to us, as we spoke in an unknown language – the language of appointments, diagnosis, additional support needs, special education. People finding it uncomfortable I guess. We didn’t fit in with our imperfect life any more. Sad but true. We moved on, life is too short to be around people who can’t even be when you experiencing hardships of life.
“Live life to the fullest, keep your dreams alive, uplift each other, share a smile and a hug.” – Ylona Cavalier
Lesson #6 His needs are important.
Being a dad thought me a lot. Especially in terms of awareness for my children’s needs. With autism of our boy, we had to look at things from many angles and many various perspectives. My son’s needs are important, obviously. But having a neurotypical daughter we have to make sure that she has her needs met too. So, how to meet the needs of two so different children, without letting them down. This was always important to me.
Since the beginning of our journey as parents, I wanted to focus on the wellbeing of both of our children, to give them chance to try new things, to inspire them, to give them best childhood possible but at the same time, I had to respect their differences. I had to explain to my daughter many times that her brother sees the world in a different way and we have to adjust, as his needs and interest are important to him, even if I or she is unable to understand it fully. I learned to spend time with them together, and one on one. An important lesson for all.
One day my daughter asked me if her brother will be always dependent on other people.
Daddy – Will Maks always live with mummy or daddy? He doesn’t understand the dangers. It was a very wise and hard question.
I said to her that we don’t know much about our future and one day when mum and daddy will be gone I believe that Maks will have some support to live a happy and fulfilling life.
I will always help him – she added. He’s got me. I will look after him.
I was moved to tears, she was just seven. I explained to her that as much I love what she said, it’s our responsibility to make sure that both of them will live happy lives and we, as her parent’s don’t want for her to think that she has to look after her brother. I don’t want her to have this burden hanging over her head. This wouldn’t be fair.
Lesson #7 Awareness is a key
I could be angry, I could fight with the whole world to understand my son and our difficulties but it would kill me. Instead, I’ve learned that showing love, support and being open about our struggles is more beneficial to raising awareness on autism. Autism is affecting our lives each day, I don’t need to rush anything. I got this blog, I wrote my book, got amazing kids and my partner. Each day I have a chance to slip some of the awareness and my knowledge at work. But it’s a two-way street. I’ve learned a lot about autism from my boy, this leads me to work with adults with ASN, later in ASN primary school, college and now to support dads across our city and I love this to bits.
Lesson #8 Go with the flow
Life is always changing its course, the same with our children. One day they are into a ponies, next into books about superheroes. The same with day to day co-parenting. We went through stages where kids wanted to travel between homes all the time, later they wanted to stay longer with me, now they more happy to be guests at mine and be here less often but wanting me to visit them at mums.
We have our written agreement but life is not always black or white as on the paper. We are pretty good at co-parenting and communicating with each other. They both can always count on me, mum and their stepmom also. It’s not easy sometimes to make everyone happy but we always trying to be child-centred. We just want to make most of it.
Lesson #9 Listen to your gut
How many times your gut tells you that something is not right? As a father, I know that feeling well. When one of my kids had an infection when something was off. We parents got this gift. Sometimes you don’t know what’s going on but you know that something fishy is going on. When my son week after his surgery for tonsilitis became pale I knew that something is off. A few minutes later I walked in to check on him, had a basin in my hand just in case. As soon as I walked in, he started to throw up with blood. His wound got open, we managed to get to the hospital on time. My non-verbal son was kept for another two days with extra surgery happening in the morning.
Scary stuff. But as a parent, you need to trust your gut. Besides, each parent of a child with additional needs got this extra gut feeling, it’s like different detention. Thank god.
Lesson #10 Don’t overthink stuff.
Really. My son taught me to look for simple things in life. It’s not about what I would see good enough for my children. I need to follow them, if my son is a fan of Lego Dimension figurines but he’s not interested in playing on PS, that’s fine. Let him collect those figurines, this is his hobby. If your child is happy with holding bottle top in his hand, no harm was done, let him. We all different, let your child explore what he/she likes, we all got different opinions and views on stuff. Sometimes I had to say to myself – Niko, chill out, he likes it, let him do it, be open, no harm will come from it. Sometimes I had to stop myself, think as my own son and accept things. Don’t overthink it. Life is really too short for it.
I really hope that some of my lessons will come handy. Especially for parents at the beginning of the ASD journey. It’s ok to be scared and angry, it’s ok to feel lost. It will pass. If I can help in any way, feel free to write to me. Being a dad and live in a blended family might be a challenge, or might not. Each of us is different. As our children.
Be kind to yourself. Sending love. Niko.