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Bru-mance

On 4th January 2016 I relocated to Brussels on a 3 month secondment. In those 3 months I made lifelong friends, we had lols for days, hangovers, a detox diet, so much pizza, I gained 10 kilos, launched an autism awareness project, took LPC exams and witnessed a terrorist attack.

I fell in love with Brussels because it’s such a weird place. You can find anything you want but it is organised chaos. You only have to walk around for 20 minutes and you are bound to go through european, residential, touristy, historic parts of the city. It’s a small town playing dress up as a big city.

On 22nd March 2016 I went to work super early because there was a lot going on. It wasn’t until 9am that I sat down, switched on my PC and looked at my phone which kept getting messaged and missed calls that a colleague said to me – there’s been an explosion at the airport. We knew a group of people from our institution that were travelling that day so we immediately began trying to contact them. It wasn’t until the second explosion hit the news that I stopped and thought that this was something I should worry about. We had colleagues stuck on trains and being diverted, colleagues trying to come back and others trying to leave because they had to get to their children. Our building was in lock down and we had to do inventory to figure out if we would be okay to stay the night. When we were finally allowed to leave, we walked through the city to our neighbourhood, it was such a sunny day. Three days of mourning followed.

I wasn’t scared that day. I couldn’t be scared because we were burdened with so much responsibility. In the weeks that followed, we retold the day’s events so many times and I always remember not being scared. I credit this to that one colleague who was my rock that day, and who stayed late with me when I offered to walk people home. I was scared that afternoon when I had to go buy enough supplies to get me through the next few days. I was scared when I locked the door to my flat and I was alone. For the next few days, every time I heard a police siren I checked the news. Two days after the attack a friend called to say there’s a march and we should go.

The Bourse was overflowing with people, flowers, candles, song, laughter and life.

I love Brussels because there’s surprise at every corner; you never know if the car will stop at the zebra crossing, or what kind of amazing cuisine you’ll uncover during a stroll.   love Brussels because their landmark is a small bronze sculpture of a naked boy urinating.

I love Brussels because it was were I started my autism awareness project for Christos’ 18 birthday (#Project324). It was from there that I asked the team if they wanted to be part of the project, it was there that the cards were printed, cut and mailed to 18 countries. I am so proud that my brother’s 18th birthday project is associated with the city of Brussels.

In a short 3 months, I loved, I lived, I drank, I ate, I campaigned, I advocated, I worked, I helped, I was scared, I was angry, I lolled, I studied, I cried, I learned, I got a pink elephant hat. Most importantly, I was inspired. On this day, two years ago 32 people died, hundreds were injured and millions were inspired. Millions around the world were inspired by the fearlessness of humans.

#jesuisbruxelles

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I know you

I’m writing this for the families.

I recognise you when I see you; in the street, at the shop, on the train, at a restaurant. I see you, I know you; we think the same even though we don’t live the same life and  I know you see me too.

You live with autism:

If your kid, brother, sister etc has never told you about their day.

If you have spent the most part of a day repeating one sentence over and over again.

If you wake up and wonder who will take care of them after you die. (If that sentence put a weight on your chest right now)

If the sight of a teenager shaking their hands and hopping in the queue at the shop makes you smile and cry at the same time.

If you find it strange to have a conversation with a five year old.

If you pause before answering “How old is he?”.

If you are an expert on graceful declines for when you get invited somewhere.

If going to a restaurant isn’t something you do for fun, ever.

If you haven’t focused entirely on a conversation with another person in years.

If when you leave the house you carry a bag full of their ‘favourite distractions’.

If you have ever wondered whether they will have a friend.

If you cried when they became teenagers.

If you know what “stimming” means.

If you know what these stand for: IEP, SPD, BCBA, EEG, GF, CF.

If you know what a decompression chamber is.

If you know that achievements mean different things to different people.

If you appreciate ordinary days.

If your answer to “How do you do it?” is a smile.

If you never wonder what you are made of.

 

I’m writing this for the others.

Our children, brothers, sisters have enriched our lives in so many ways.They are fierce, and bright, and beautiful; they make us fearless. They know what they want, and are uncompromising in their pursuit of it; we know what we want and we are ferocious in our pursuit of it for them. They make us better people; because of them we are hungry for knowledge, we have purpose, we have strength and we can face anything.

Here are the top ten things that people who live with Autism, every day, want you to know:

1. Don’t feel awkward when we say they are autistic. Don’t ‘Aww’.

2. Yes, they are different but they don’t need your consolation. Yes, you will need to treat them differently, but they are adored.

3. Don’t say “He’ll grow out of it”. They won’t, the sooner they get diagnosed/treated the better.

4. When you see/hear them on a bus, a plane, the shop, the street, don’t try to discipline them; hell hath no fury like a parent of autism.

5. Don’t stare. I always think I’d love it if the people who stare would just ask me about him.

6. They are children. They are innocent. Their love is so pure and overwhelming. They bring us more joy than hardship.

7.  Give the family support; not pity.

8 . Accept our kids the way that you assume we will accept yours.

9 . Teach your children about autistic children in a special needs class at their school. Ask questions. Educate yourselves about Autism.

10. Remember – every day for us is a battle, a battle we are happy to fight, a battle we will fight forever.

We know you when we see you, so get to know us too.