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Making Routine Flexible b) Chris in the car

Because my parents live about an hour from each other, my nan in the middle and the general attitude in Cyprus that you can’t go anywhere without a car Chris spends a lot of his time in cars. He loves the journey, he always, always, sits in the front, he has complete control of the A/C and the radio. He likes the AC to always be on 2, and the volume to be on 20. He used to want it to be on higher but we’ve negotiated a lower volume so that people in the car can have conversations of their own, and also not go deaf.

I remember we used to have a remote for the radio in our old car (A REMOTE FOR A CAR) and my mum would have to lower the volume between songs. Needless to say, we never got away with it. This is another example of how incorporating something new/different (in this case volume) is more easily accepted when not forced, or done in a sly manner (like when i was 2-3 and my parents fed me fish and told me it was chicken). It’s better to approach it directly, explain the situation and be persistent and consistent with your choices. Eventually after negotiating a lot of volume numbers we settled on one that satisfied all passengers of the car. He used to pick the music, CD’s, and play each song at a different point in the journey. If we were delayed he would simply stop the CD and wait until we got to that specific place to start it up again. He loves music, he listens to it all day long. From Greek music to English, from the 60’s to the contemporary charts. He’s always loved music, I know because my mum has embarrassing videos of us dancing around in our house. I believe music helps them interact better, the sounds, the melody, that special song that makes you want to sing or dance along, it develops their senses and it makes them want to interact with people around them; or if not, at least they are interacting with the music itself. I would recommend incorporating music into their lives early on, have it in the background, make them move around with you during an up beat song, sing to them and accompany that with movement. A single song can make us smile or cry and our kinds aren’t different, they just need that push.

Another lovely thing about travelling with Chris is that you cannot, CAN NOT, sing in the car. Their sensors are bursting at that point and our off-key, often wrong sing-alongs are quickly squashed. This isn’t something he’s just picked up, he never liked us singing along to songs he was interested in, he’s enjoying the music so much that any attempt disturbs him.

If you see a kid somewhere shaking their heads, flapping their hands or jumping around, listen for music. That might be their way of dancing or expressing themselves, their expressions are so carefree and genuine. They don’t care if people are looking when thy’re dancing, or if their moves are out of date.

Educate yourself about Autism and join the dance.

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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.