0

Sibling Week

There was a hashtag trending a few weeks ago celebrating Autism #SiblingWeek and I had messages asking me how i felt and how I coped as an Autism sibling.1456685_10152043682305030_1431061625_n

In my head, it’s unfair to blame the parents if a sibling is struggling to understand Autism – the parents have enough to deal with. And yes, they are important and they need to seek out ways to get professional help, or books, or alone time. They’re only human and they have their own emotions and their own process to go through; life just dealt them a wild card. I believe, the doctor that gives the diagnosis should also offer advice to parents about their siblings. I haven’t figured out the ins and outs of it yet; but shouldn’t it be a professionals job? They deal with this every day, they know the consequences, they know the shock that drowns out the reality you had been living in until that moment. Even more so, shouldn’t the school be aware of ways to help so they can be offrered?

Chris and I were born 8 years apart. Raising a child, in general, demands extraordinary things from parents, and the family as a whole. When one of them has Autism, those demands are the only thing you have time for. The time you invest in the well-being of that child, you know you will not regret when you see their progress. Siblings though, older or younger, remain silent bystanders. Their silence resonates in their misbehaving at school, in their picking up of bad habits and hanging out with questionable friends. The way the ‘Others’ are affected can take as many forms as can Autism.

416800_10150752443010030_1110641324_nI don’t know whether it’s harder when they are older – so the attention is shifted completely from them – or when they’re younger – so it’s all they know and might not get enough attention.  Your life has changed, the balance has shifted, your parents only talk about Autism, and you can only trace it back to one person. It causes resentment, whether you are old or young, the feeling is there. My mum told me that when Christos was born i used to climb into bed and drink milk from the bottle. I was 8 years old. I was at school. I had friends and I was drinking milk from a bottle and asking my mum to tuck me in; seriously. When he was diagnosed I started acting out at school, mum said – original. Thinking back on it now, its embarrassing, but that’s what happens to children.

As a result of no proper support system being put in place for the Others, there is tension that builds up between the needs of the child with Autism and those of the Others. I used to get annoyed when he played with my toys, when he watched my video tapes because he broke everything; absolutely everything. What i have found, in reading about this and listening to stories, is that there are many ways this frustration can manifest and without the right guidance it can get out of control. The obvious side note here being that where Autism isn’t dealt with early and effectively we get relationships that break down, or never even form to begin with.

In my experience, personally, as well as my discussions with other Others, the great majority has to deal with jealousy for the first couple of years but then there’s this power that comes in. Maybe its from reading, maybe its from witnessing how strong your parents are, maybe its from seeing how someone so small can be so fierce, how someone who cannot speak 419409_10150751639425030_721113893_ncan progress right in front of your eyes. I’m not sure what it is, or where it comes from, but it does and it makes you become who you are. You grow up, you cope, you become passionate, understanding, experienced; you just learn that life isn’t about coping, it’s about taking every day and making it worthwhile, it’s about excellence, because someone is doing that right there, in front of your eyes.

The bright side of being an Other is that we learn, whether alone or with help, to manage these demands and behaviours which makes our childhood/adulthood easier. It teaches us skills we wouldn’t otherwise have or learn at school. We become effective and resilient adults; because being an Other doesn’t end with childhood. It’s a bond we don’t have words for, it’s a relationship that matures and grows stronger over the years.

The concerns of toys and attention fade and as an adult we start thinking of the future and develop a sense of responsibility that makes it difficult for us to leave home and begin an independent life.

Missing home was isn’t an issue, but missing Chris is unbearable. I can text, whatsapp, call my parents, my friends, my family; but my brother I can’t. He doesn’t like the telephone, or talking on skype for too long and when we do he just tells me what he wants to eat. I consider myself lucky if I get the same few words out of him; always ‘Hello, I love you’ and when i ask how he is its usually followed by a kiss and him running away.

I can’t ask my brother how he is, can you imagine that?

It breaks my heart when they call and tell me he asks for me, and asks when he can see me. There’s this weight on my shoulders that I’ve put there that will not be lifted until i know i can give him everything he wants. He doesn’t ask for much, he just wants his music, his food and the pool; but its doesn’t matter, because if he wakes up one morning and asks for something, i want to be able to give it to him. No one expects this from me, and no one has ever spoken to me about the day I will be his carer but it’s something i have been preparing for since i was 17.

That’s the end-game, that’s the dream.

That’s what being an Other does to you, it drives you and it makes you better. So when you meet someone with Autism, take a moment to take it in, see beyond the Autism and realise that they are inspiring, they can motivate greatness without ever saying a word.

0

The [A] Word: Look for the [S]igns

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.

Red Flags

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;

Impulsive;

Impassive;

Short attention span;

Temper tantrums;

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 smalle10173765_10152395220290030_5414277748163382939_nr 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.