Funny Fact: Christos loves to cycle at school.
When he was learning to ride a bicycle, he got so used to the training wheels that it took a while to get him to get used to the fact that he could still ride a bicycle without them. Now he rides a tricycle and he is happy.
We face our own mortality every day.
We know that if anything were to happen to us he would be left – no one can understand his words better than us, no one cooks his food like us, no one knows how to do his schedule, plan his meals, his table, his homework, his music, his clothes, his haircuts, his nails, his teeth, his doctors, his medicine like us. No one can calm him down like us, no one can explain things to him like us, no one can negotiate with him like us. I mean, they can, but not like us.
So, what happens when we are gone? What happens when he gets average care? What happens when life takes your plans and throws them back in your face?
What happens when your dad has a heart-attack?
The world stops, looks at you and shatters right in front of your eyes; the earth is swept from under you; time stands still and your life past, present and future is ripped apart; just like that, in an instant. For me, because I’m so far away, it was the first time I thought of quitting it all and going back. It was my worst nightmare come true; in the middle of a course, in debt, alone, what would I be able to offer my family? How do you explain to a 16-year-old autistic boy that his daddy was in intensive care for a week? How do you explain the concept of loss to him?
Families of Autism live with these thoughts every day, we don’t have a cure and we definitely do not have answers.
All we want is awareness. We want you to know, we want you to learn, we want you tell people about Autism; because when we are not there, we need to know that they will be cared for, they will be accepted, they will be given opportunities and the chance to grow, develop and be part of society. Because when their world is turned upside down and they don’t understand why we need our society to be equipped and ready to welcome them and support them.
Because we don’t want to be their entire world, we want the world to be their world; if that makes sense.
The holidays are approaching, maybe your gift this year can be reading one article about Autism, having a conversation with someone onthe spectrum, talking to your children about that kid in school and why he ‘acts different’. Your five minutes of being open, reading and understanding may help change a kids life.
Read, ask, learn about Autism; fear ignorance more than mortality.
One of the most important things you need to understand about fighting Autism is that it needs to be diagnosed as early as possible. Early diagnosis means early treatment; development of social skills; development of speech; creating a life and environment for them in which they can grow, not be restricted.
Not responding to their name by 12 months of age;
Not pointing at objects to show interest or curiosity;
Difficulty in establishing eye contact;
Not participating in ‘family time’; and want to be alone
Getting agitated in loud situations or in crowds;
Having trouble accepting change in their environment;
Having trouble expressing hunger, thirst, pain;
Have extreme reactions, to music, smell, food, colours, or the way their clothes feel;
Short attention span;
Or has flat or no facial expressions in different situations;
Delayed speech and language skills;
Repetition of actions or sounds over and over again;
Obsessive behaviour with one toy, or object, for long periods of time;
Hand movement, rocking of body, high energy and other self-stimulatory behaviours;
Or no energy at all, some kids are completely closed off;
I remember my cousins being so curious when they were infants, so interested in everything going on in the world and the people around them. Chris was interested in things around him but it was smaller things like he didn’t look at us when we spoke to him, he didn’t want to play with me he’d rather play with my things by himself, he would throw tantrums when he was thirsty but couldn’t tell us or point to what he wanted. For example, a child might be able to read long words but not be able to tell you what sound a “b” makes. When he grew up these things changed because of the early treatment he received. There was a year when we couldn’t hug or kiss him without him getting mad; there was a year of repeating the sound “ooh” every night before bed until i said it the right way, and most of the time i didn’t.
Repetition is huge with Autism. Actions, words, sounds, motions which can involve a toy, their body, an object, a person. These action are repeated over and over again. For instance, Chris likes to run up and down a room, when he’s happy and repeatedly flapping their arms, shake his head or make certain sounds. I’ve mentioned before how he likes to play with whipped cream and white flat-beans for hours; its the sounds, the feeling, the safety of repetition that draws him in; these activities are known as self-stimulation or “stimming.”
By their first 12 months a toddler will interact with people around them, by looking people in the eye, copying words or simple gestures like clapping and waving. You would expect to play peek-a-boo with them or interest them in playmobil toys; me and Chris played hide and seek sometimes, but it was mostly the case of me hiding and him finding me, or not knowing what had happened and getting on with a game by himself. We played peek-a-boo but he mostly looked at me like i was insane, there were times when he enjoyed it though. That’s another thing about Autism, they might close themselves off and then there’s this moment where you get to glimpse into their world, or they give you a look, a smile they have never given you before, and its beautiful.
Each person with ASD has a different set of social and communication skills; some speak, some don’t, some can but only some words, some can but cannot pronounce letters, some can write essays, some go to university. Don’t assume that Autism doesn’t speak, don’t assume that Autism doesn’t want friends, don’t assume that Autism doesn’t like handshakes.
People with ASD might have odd sleeping habits. They also might have moods swings or unpredictable emotional reactions. For instance, they might laugh or cry at unusual times or show no emotional response at times you would expect one. In addition, they might not be afraid of dangerous things, and they could be fearful of harmless objects or events.
Remember that Autism is a spectrum disorder, a child, or adult, will not have all the symptoms, or they might. That’s the thing about Autism, it keeps you on your feet; for the rest of your life.
Don’t be scared, don’t sweep it under the carpet.
Learn about it, educate yourself about Autism – get it diagnosed.
Tired of being up all night.
Tired of feeling helpless.
Tired of not feeling good enough.
Tired of feeling like we make no progress.
Tired of being ignored.
Tired of being excluded.
Tired of people staring.
Tired of being treated like we are different.
Tired of being to comply to society’s expectations.
Tired of being compared to ‘normal’ kids.
Tired of people not understanding.
Tired of screaming.
Tired of trying to make them keep up with society’s latest definition of ‘normal’.
Tired of being stereotyped.
Tired of people who don’t understand Autism.
Tired of people who don’t make an effort to understand Autism.
Tired of people drowning in their ignorance and prejudice.
Tired of the consequences this has on our kids.
Tired of the pity.
Tired of assumption.
Tired of not being heard.
You can be tired, but you have to never give up; you can fall, but you have to get up. Make them listen; make them see; make them aware.
We, the families, have only one wish – help us make it reality & learn one new thing about Autism.
*Want to make a difference? I know you
I’ve been reading a lot of articles lately that (albeit trying to educate) put Autism in a box.
Autism cannot be conceptualised. It’s a force to be reckoned with and like any powerful force it doesn’t appear in one standardised form. It comes in the inability to take a different route home; repetition of words or actions; finding it hard to engage in casual conversation; hand movements.
Autism is something you need to accept. Realise that your child needs you early on rather than spending years in denial or consumed with anger and “Why us?”. Acceptance from others is something you cannot control. It will frustrate you and break you; but you need to get up and hold their hands proudly. Do not hide them away, they deserve to be allowed to live a full life even though it will inevitably put them in a position where they will be stared at, pointed at. As long as you are there, by their side, none of it matters. Remember that the children don’t realise they are being stared at, they don’t know people are pointing at them, it’s you and your own inhibitions. Don’t let that take away their walks in the park, their playtime, their eating out or going on holiday. Embrace their traits and make them visible to a world which doesn’t really fully understand Autism still.
Don’t apologise for who they are. When they are happy and running up and down, when they are trying to tell you something only you can understand, when they rearrange things in a shop, when they want to go on only one ride over and over again. But also, don’t make it an excuse when they misbehave, don’t use Autism to let them be aggressive, or to be rude to people around them. It doesn’t matter if you are in a public place, they need to know what is allowed and what is not. Don’t let them get away with throwing things or screaming if you can, remember that with Autism it’s all about routine, re-occurrence, do not set a precedent.
When Christos screams of gets mad at a restaurant or a supermarket we whisper the word ‘silence’, a hand gesture to make him aware that he needs to change the volume he is speaking in, he’ll still repeat what he is saying but in a whisper, which then enables us to take control of the situation – it takes time, but persistence is the key. He knows he cannot get up from the table, he cannot grab people to show them what he wants, he cannot throw his clothes on the floor or go to bed without brushing his teeth. Not all children can be taught etiquette though, especially with more severe cases it’s hard to even make eye contact, much less to react to social cues; but I can only comment on our experiences and hope that it helps you.
It all starts at home, if you raise them with restrictions, if you make them feel excluded from the world they will sense it; inadvertently or subconsciously, just because they don’t have a voice doesn’t mean they don’t have something to say.
Raise them with pride, show the world that Autism is something that can be tamed; we cannot defeat it yet but we can try our best. Be proud of their achievements – even though society will tell you they are small. Remember that every little change, every development and everything they achieve is because of you.
Teach others about Autism, let them learn from you. Don’t make it a word we have to whisper, don’t let it become an excuse.