Tough bikers showing what it is all about.

A pizza night, live music, a random biker gang and so much love and gratitude.

Something incredibly heartening happened the other day.

Thank you, Marsulianos Clã, for being the sweetest biker gang ever.

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No one really teaches you how to be a parent, right?

You take what you get from your parents and mix that with whatever other knowledge and experiences and traumas and growths you get along the way and then do the best you can.

I can't speak for everyone, of course, but I think that's generally how it works. We imitate and adapt and try and fail and try again.

My oldest child - my daughter - was born when I was 26. It all came very naturally to me. I didn't struggle much with doubt or fear or guilt. I believed in myself as a mother. But at that time, at that age, I did not question myself the way I do now. I did not see myself the way I do now. I just lived and made mistakes and gave love and was exhausted and overwhelmed and gave more love without thinking much about the how's and the if's and the why's. Despite all the normal exhaustion and overwhelming emotions, parenthood felt easy to me.

Three years later, I had my second child and then, fourteen months later, my third - my two boys. Both Max and Tobias have a very rare genetic syndrome that, amongst other things, significantly affects areas of development such as language, cognition, fine and gross motor skills, while in our particular case, at that age, you could not tell just by looking at them that there was anything different about them. It unfolded very gradually. They were not diagnosed until the oldest was four years old, so we were already up and about with them, just living our lives as free-spirited as we were.

Having kids with disabilities significantly changed my sentiment about parenting and gave me a whole new perspective of this parenting journey that I was only slowly beginning to unravel.

Parenting children with disabilities changed the way I saw things, it changed my perception of tolerance, discipline, engagement, consequence, it changed me. I had to learn to tolerate many things I thought I would never tolerate, and at the same time, it taught me that life, with all its emotions and connections and perceptions, is not as flat and linear as I was experiencing it at the time.

Having children with disabilities and wanting to understand and connect with them challenged me in ways I hadn't expected and didn't even realize, partly because I was just carefree and confident, and partly because I had to work and take care of the kids and navigate through the daily demands of life to such an extent that I didn't have time to question things. I was too busy with life as it was.

So many things in life become so much clearer with time, it's crazy. Crazy and beautiful.

Although I know that in many cases it would have been helpful to have had this insight back then, I am grateful that I had the chance to just do things intuitively with my children, just us being us, me being me, together, enjoying and struggling, but not dwelling in excessive concern.

Tobias, Max and me

As a child, I had almost no contact with people with disabilities. I knew a few from school, but I did not know what it meant. I did not realize how the world reacts to them. I didn't know how they felt, what it was like for them to be with us. With people who perceive things differently, sense differently, understand differently. I still don't know how it is, how they really feel, but at least regarding my two boys, I think I can say that I get the feeling.

When my oldest - my daughter - was three, and the second - a boy - was only a few months old (and I was pregnant with the third, but I didn't know it at the time), we backpacked through Asia for two months, starting in China, all the way to Thailand and Cambodia. I remember we didn't even have a smartphone back then, we went to internet cafes to write emails home, and we didn't book anything in advance, we just searched for rooms wherever we went.

A few years later we traveled with them to India, also with a backpack and no advance booking, but I think we had a smartphone by then. I only say that because those damn things have made traveling so much easier that it seems almost impossible to travel without one today. But being a child of the eighties, I actually look back fondly on those days. I enjoyed the unexpected and spontaneous side of traveling in the pre-smartphone era.

Tobias, on a train in India

Anyway, I guess my point is that we really just lived life, you know? We didn't let parenthood and everything that came with it shrink our adventurous spirit and instead, we took them on adventures.

When the two boys were little, and even after they were diagnosed and we knew they had a condition - which, by the way, is so rare that there was literally no information or guidelines about it (so we were forced to act intuitively) - they would mingle and play with other kids, just like any other kid would.

I remember the first time another child noticed they were different.

They were sitting at a table, drawing, and Max, my middle one, apparently couldn't draw something that the other kid thought he should be able to draw. The other kid looked up at his mom, wrinkled his little nose, and asked bluntly: "Mooooommmm, why can't this kid draw like me?" ... I was watching them as they sat there peacefully in the shade, and I saw the expression on this child's face, and then I looked at Max's face, with his typical look of concern, his James Dean look, not understanding, but trying to - I remember it so clearly.

And I still remember that sting, that new, unfamiliar, sad, and hurtful feeling that is now an intrinsic part of my life. I felt sad, and I felt the urge to protect my little boy, but I knew I couldn't, and I was angry, and I felt the need to explain, but I thought, what for, and, there and then, I just knew that moments like this, reactions like this, will become more and more common the older they get. This is what my kids are going to have to deal with for the rest of their lives. Because different, no matter what kind of different, sticks out somehow, and we, humans, we can be real assholes sometimes. Even if we don't mean to be.

And so it happened as I had predicted.

As they grew older and developed slower, the differences between them and children of the same age became more and more visible, and as a result, they were more and more often faced with children (and adults, for that matter) who did not know how to react to them.

Besides the children who know us, the children of friends or schoolmates, every now and then there is a child who just does not care whether they speak or not, whether they understand or not.

I've come to the conclusion that some of these kids who don't care are either the ones who talk so much that they don't even need someone to answer them, just someone to listen, which my children are happy to do, whilst giving them their biggest and warmest smile.

They are so happy, my two boys. They are happy almost all the time, but when they are seen, oh boy, they light up like they are bursting with happiness.

It breaks my heart. That is all it takes. Just see me, look at me. Don't ignore me.

I have also observed that some of the kids who interact with them are the ones who can navigate life through feelings and emotions, the ones who can find their way in a world where words are not the primary means of communication. Some children (not many of them) actually really see them and are fascinated by them, are empathetic and/or have other sensitive abilities that allow them to connect.

This may sound strange, but I think it was not until about two years ago that I started to become more aware of the tools my children use to navigate the world.

Isn't that strange? Being a mother, living with them for years, day in and day out, and not really understanding how your child moves through the world. I know you never really do, but this is another level of not understanding. This is not understanding how they experience, how they think, how they perceive time and space, how they view themselves as human beings.

I have noticed more and more that they are highly sensitive.

I believe that much like when a person loses their eyesight, for example, and then the body adapts and other senses become more developed - as a survival mechanism - I believe that my children have developed some of their senses more than most people have.

Because they cannot rely on intellect and cognition to navigate the world and life in general, because they cannot analyze action-reaction concepts, I believe that my children orient themselves not only, but significantly, through enhanced sensory abilities. I can't prove that this is true, but this is how I observe them. I feel that my children hear and feel (I cannot say much about the other senses) intensely and that this intensity is sometimes also the reason why they feel so overwhelmed at times, perhaps similar to autism.

I am not an expert here, I am just talking to you about my perceptions and experiences with them.

I would say that one of their strongest navigational devices is how much they feel. And they feel a lot. They look you in the eye and scan your emotions to see how you are, to adapt to your mood, to find out where they are at. They gather information from the whole and adapt to emotions, rather than associating individual words and meanings and acting according to norms and consequences.

This realization has profoundly changed the way I interact with them and has enriched our relationship immensely. It was the turning point in my parenting journey with them.

And, of course, as a mother of two children with cognitive disabilities, I also had to, and most importantly, I wanted to learn how to deal with all of this. How to decipher them, how to feel and move around them, how to learn to regulate their emotions and try to understand their frustrations, fears, and angers. I wanted and will always want to learn how to connect with them.

They cannot tell me that their stomach hurts or that their head hurts or whatever. They cannot tell me what they dreamed about last night or what they are afraid of. Most of the time they store all these emotions inside and it is only natural that this accumulated energy has to find a release channel eventually and that sometimes they go into chaos mode and stir things up and heat things up and that then - suddenly and chaotically - we find ourselves in the most furious outbursts of frustration and anger, which are so human and so necessary and so understandable, but because of the intensity and the lack of understanding and communication and emotional regulation, are also really hard to deal with … and that sometimes I am literally scared of these moments. 

As a mother, I am also guided by my own sensitivity. My sensitivity and empathy help me to connect with them. It is hard to put into words, but I even somehow believe that not only their but also my senses have been inadvertently sharpened by having my maternal instincts so intensely and constantly challenged for 14 years now. Does that sound crazy?

We adapt, right, that is what we humans do. I try not only to decipher them by looking at them and feeding them and cleaning them, I try to feel them. I try to understand them.

In the outside world (although I have to say that these moments do not happen very often), away from the security of our home and our known environment, my boys sometimes have to deal with people who stare at them with those gazes.

Those side gazes that suggest discomfort, that suggest they do not know how to react around them, some sometimes even with a slight hint of disgust, while others, especially children, can be hurtfully direct and blunt towards them, in a very natural and childlike way, but still hurtful. And then, after being confronted with these initial gazes and stares, most of them choose to ignore them.

And the ignoring part is the hardest part for me. It breaks my heart to know that my children will grow up used to being ignored, and simultaneously I see how much they want to be seen and to belong. But there is not much I can do. That is our journey, and that, too, undoubtedly makes us stronger.

And please know that I do not judge. As I mentioned before, until I had my boys, I also had no contact with people with disabilities and I remember what it is like... but it still hurts - every time. I am their mother. You get used to it, you know, but I see it and I feel it and I know they notice it too, but they swallow it down in an impressively healthy way. I think they have also somehow chosen to ignore it, they have chosen to throw those looks and stares and the feeling of being ignored in the trash and they have chosen to go on being themselves with the intoxicating happiness that is characteristic of this syndrome.

Today they are 14 and 13. Max is as tall as me, if not taller, and of course, as predicted, you notice the difference more now than when they were younger. And life with them has become more challenging in many ways, but also a bit easier in others. But still very demanding, no question.

Nevertheless, I still go out with them and try to do things with them as often as I can or have the energy and money to do so, and so the following, most wholesome thing happened just a few nights ago:

We went to our favorite pizza place, Pomodorino, which was having a live music event. My kids are used to being around people and mingling at parties, so everything was just fun and easy, and luckily, they were both in a very good mood.

That night, a group of about 15 bikers arrived at the venue, which doesn't happen every day because we live in a small town, and they came from far away and definitely stood out. It started to rain, so we all gathered in the small restaurant, where the live music picked up the rhythm and we all had fun, dancing and laughing, enjoying the evening.

My boys, of course, couldn't take their eyes off the bikers! They just stared at them curiously, with their big smiles and big eyes, and we gestured a few words like "bike" and spelled out the gang's name that was written on the back of their heavy black leather vests. The bikers started to notice that I was gesturing with them and they looked at us, very friendly, so I went over and said, "Hi! My boys are just totally smitten with you guys.”

They smiled and asked a few questions and then one of them reached into his pocket and pulled out two stickers and gave one to each of the boys! Max and Tobias couldn't believe it, they were so proud, so happy!

We exchanged a few more sentences and then one of the bikers said, "You know what, we are going to take a picture with your boys. Just wait here, I will get the whole gang together, just wait here."

Wow! This rather tough-looking, black-vested, long-bearded biker gang was going to gather up just to take a picture with my boys. How cute is that?!

The guy went and got the whole group together. The restaurant was completely packed by then and we had to find a small space to try and get everyone in one picture. While we were sorting out who was standing where, one of the guys took off his heavy black leather vest and put it on Tobias’ little shoulders. OMG, Tobias, his face was worth more than one trillion words, and a million hugs together. A second guy then took his vest off and put it on Max’s shoulders and now both my boys were smiling like the two happiest kids on the planet.

I didn't have my phone with me so we asked a friend to lend us his. I took the picture. I stood there and watched them with their big smiles, some with their tongues out and others with their arms up and their happy faces and their beards and their biker outfits, and in the middle of it all, my two boys - my two boys who so often are just ignored and so often have to deal with those side-eye gazes - were the center of attention for a few minutes. This tough-looking biker gang saw them. And not only did they see them, they gave them love and attention. And that seemingly small gesture meant everything to my kids, and it meant everything to me.

I didn't see the picture after I took it, and it wasn't until the next day, while driving in a nearby town, that my friend sent me the picture. I stopped the car and looked at it and couldn’t help but start to cry, tears of gratitude. Max and Tobias' faces say it all.

Some of the Marsulianos Clã and Max and Tobias. So much joy!

And the fact that we have the picture now will make the memory last much longer. Because we cannot just talk about what happened two years ago, or five years ago. But with a picture, the eternalization of that momentary glimpse will last us forever and we can hang that picture on their bedside and they will never forget that moment.

We will never forget that moment.

To that tough-looking biker gang that saw my two boys and did not ignore them: Thank you!

We will never forget you. You guys rock! And you are without a doubt the coolest biker gang in the whole world.

With love,

Kia, Max and Tobias

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