3

Christmas Wishlist

I’ve heard three Christmas stories this week.

  1. The recurring one was actually the same story I hear every year. The story you probably hear every year at this time – the one about presents. The one where you start complaining about how expensive Christmas is, or how busy the shops are, or how tired you are because you’ve had too many Christmas parties already.
  2. The second one was about Sean Stewart. Sean is 10 years old and lives in Louisiana . His wish this Christmas is to receive 1,000 Christmas cards. You see, Sean’s favourite thing in the world is getting mail. Last year, his mum launched a card campaign through which he received 450 cards. She said “He’s definitely a person who shows that, despite the odds, he’s willing to and he’s tried so hard to break this idea of what people speculate, or what people think about with people with special needs. He is definitely breaking the mold”. Ah, Sean is on the spectrum. Sean’s mom says in addition to helping with his communication, the Christmas card campaign has helped her son develop new interests in things, like collecting stamps and stickers and learning about geography. You can send Sean cards at: Sean Stewart, P.O. Box 359, Natchitoches, LA 71458.
  3. The last one was about a mall Santa. It read “My child is amazing! He has his quirks and drives me bonkers, but he is amazing! The other day he went to see Santa w the cousins. He said his peace to the old man in red and walked away. While aunt Brittany waited for pictures to print, he went back to Santa bc he wanted to tell him that he has Autism. He was flapping his hands, all excited to let Santa know that he has autism. Santa sat him next to him and took L’s hands in his and started rubbing them, calming them down. Santa asked L if it bothered him, having Autism? L said yes, sometimes. Then Santa told him it shouldn’t. It shouldn’t bother him to be who he is. L told Santa that sometimes he gets in trouble at school and it’s hard for people to understand that he has autism, and that he’s not a naughty boy. Santa told L to not worry and that he has been a very good boy being who he is. They sat, and chatted for at least 5 mins. Santa payed close attention and listened to him. This just melts this momma’s heart! My child is a great advocate for himself. But this day was different. He opened up to this person about who he was and he was accepted. He wasn’t a science experiment, like he gets treated when most people find out he autistic. He was Landon, sitting with Santa and being told that it was ok to be himself. Mommy tells him all the time that he’s special and I love him the way he was made, but it’s always nice to hear it from others. To be told that it’s ok to be who he is.
    We have met a lot of amazing people in our Autism journey, but this one made the top of the list.
    Shout out to the Santa at the RiverTown Crossings Mall. You.are.AMAZING.

This Christmas, amongst the THOUSANDS of presents you buy, you can maybe send a card to Sean, or sit with a person on the spectrum or one of their family members and just listen. It is impossible to explain to people whose Christmas budget may easily count up to thousands that an autism family’s Christmas list looks like this:

  • Make sure my child is comfortable.

Only when it comes to food does Christos ever ask us to buy him something. He used to maybe ask for anything that had Toy Story or Super Mario on it, and because it’s such a rare occurrence we would rush to buy it for him. When we were in Disneyland, this year, he would point at stuff, I’d run over and pick it up to buy and he would grab my hand and ask me to return it. He didn’t want it, he didn’t need it; he just wanted me to look at that toy from Toy Story, he wanted to tell me who the character was, he wanted me to be as excited to see it as he was. It’s difficult buying Christos presents because he literally doesn’t need anything and he never asks for anything either. I used to buy him packs of DVD’s, which he would hide for years, or games for this Game Boy which he probably hasn’t played since I bought them because he only plays one game per year approx. So, now I buy him clothes because I know he’ll wear those (sometimes). This year i got him a jumper that says ‘Unwrap me’ which I think the family will giggle at – and Christos will enjoy smile that comes with the jokes he won’t understand.

Christos doesn’t write Santa lists, he doesn’t get a new phone, or the latest game; he doesn’t want it. All he wants is the meal. The one where all of our insanely loud family sits around a table and eats until there is nowhere  else to put food except Tupperware to take home for the next couple of days. The one where my grandpa will say ‘Christo Cheers’ to him a million times and Christo will clink his glass a million and one times, because its Christmas and he knows that’s what we do on Christmas. He loves having people over – because of the food, but also because he loves having our family around. He loves the people he spends Christmas with and isn’t that what Christmas is all about? Loving your people. He waits for my mum to decorate the massive Christmas tree, and the rest of the house. She does an amazing job – and that perfectly decorated tree will be our Christmas memory forever. He wants the lights to be on, all flickery and cheerful, he reminds mum when she forgets. I think they still have a date booked on the calendar for when the tree goes up.

He’s learned to adapt to these
exaggerated surroundings for Christmas. Yes, his sensory sensitivity must go over the roof with the colours, the lights, the shouting, the food, the singing, the sheer madness – but he loves it. He waits for it. He has learned that that’s what we do, that’s who we are and he accepts it. He doesn’t want to be alone, or left out, or locked in his room. He wants to be alone with us – that’s his gift to us.

Don’t forget to send Sean a card this year; to tell a family they are doing a good job; to appreciate how lucky you are; to help a struggling parent in a busy shop with a crying kid. Don’t forget to be kind.

Happy Christmas world.

Advertisements
1

Thankful

It was Thanksgiving yesterday. Even though we don’t ‘celebrate’ it it’s entrenched into our calendars – mostly because of TV. Putting aside the history of Thanksgiving, I thought of an answer to a question I get asked quite a lot; Why are you thankful for Christos’ Autism?

1415119_1403664636540982_1211116064_oObviously, what kind of monster would wish Autism upon her brother? Why wouldn’t I want him to be ‘normal’?

It’s more about embracing what you have and less wishing it was there. If my brother was not on the spectrum I wouldn’t wish him to be. But my brother is on spectrum, and I don’t wish he wasn’t. I love what I have been given, instead of wanting what I don’t have. I don’t wish he was ‘normal’; instead I wish that he is happy being who he is. I don’t know what Christos would be like if he wasn’t on the spectrum – he could have been in prison or he could have been President. The possibilities are endless. ‘Normal’ doesn’t mean ‘better’.

Why would I spend my life imagining what he could have been when I can spend it loving him for who he is right now?

I’m thankful for my brother’s Autism because:

  1. He’s honest. I’ve written about this before; he laughs at what he finds funny when he finds it funny; he runs around in a shop and shouts out to express happiness; he yells when he’s mad. He doesn’t conceal himself; he has no inhibitions.
  2. He is loyal. Anyone who says they’ve never snapped at their kid is a liar. I snap at him all the time; I tell him what to do all the time; I pinch him; I push him; I eat his food; I sit on him while he’s sleeping; I pull on his chubby chin; but he loves me nonetheless. He doesn’t judge me for living abroad. He doesn’t hold it against me that I’m not there to laugh with him, to watch films with him, to cook for him, to just hang out with him. He won’t judge me for my imperfections, he won’t throw them in my face, he won’t swear or call me names or use me to get what he wants. Well, he might use me to get a chocolate ice cream but I can live with that. He loves and forgives all of us every day.
  3. The Autism Community. We are part of this extraordinary group of people from around the globe. We get to meet them, and share recipes, experiences, compassion. I’ve met people through the blog, through Christos’ school who I admire and cherish. People who know me, understand me better than anyone else, even though I’ve never explained myself. To be part of a community that is always searching, always trying, always striving for success, for more knowledge, for more answers is a gift. We support each other with one message, one mind, one common cause.
  4. He is unpredictable. Which probably sounds like a stupid thing to say since this entire blog talks about his routine and how every minute of every day is scheduled. He is unpredictable in his show of intelligence; long division, calculations he can do it all. He is unpredictable in his vocabulary; he knows words we didn’t know he knew, and he knows exactly when to use them, he doesn’t hesitate when reading – he always tries even if it’s a different language – he’s always learning. His memory always stops you in your tracks. He remembers which turn to take to go to a house we went to once 5 years ago; he remembers where they keep their pasta; he remembers songs from when he was little. He remembers what kind of crisps he had in Disneyland 3 years ago; which table we sat at for tea and which bus we had to take to our hotel. The smallest thing will trigger a memory he has. Usually he’ll tell us about it and we’ll either struggle to remember or we’ll be at a loss for words.
  5. He is a role model. I’ve said this all before, so many times, but watching my little brother grow up has been an inspiration. I have learned so much from him about life, love, trust, respect. Watching him grow, learn, speak, sing, laugh, swim; watching him develop his skills, his vocabulary, his character; being there for every outburst, for every cuddle is a gift in itself. There is nothing I can’t face, there’s nothing I wouldn’t do for him. He made me better, he gave me purpose. His Autism, his blog, his stories have been shared and read around the world; he is influencing people everywhere and he has no idea. He is shifting views of Autism from “disease” to “difference”; from “strange” to “interesting”; from ignorance to awareness; from stigma to acceptance.

I am thankful for all the good and bad things that come with Autism; every scream, every slap, every word I’ve had to repeat a million times. I am thankful to be able to look up to someone who doesn’t even try to be someone to look up to. So yeah, maybe it makes me a horrible person but, I am thankful for his Autism.483721_10151540249360030_589832536_n

0

There’s a snake in my boots!

I don’t know if Christos knows what Halloween is.

My mum dressed him up for it – when he let her. One year he was Superman, but my mum found this picture – from when he dressed up as Woody. She said that it was amazing that he even let her take this picture – a full one was out of the question. He used to love picture when he was little – a poser. As he grew up though he develop this attitude of not wanting to have any pictures of himself. He would make us delete them as soon as we took them. He was so self-concious.

img_0024-e1446120651893

This was 2010, before he outgrew us all. Mum took him to a parade in Cyprus and she said that he enjoyed it. He liked being dressed up as Woody the most. Toy Story was one of his favourite animation films. We watched it over and over and over, knew all the words – Toy story 2 was his favourite. I remember him asking to watch it and hiding when Sid would come up he would hide. He still hides, also when the hyenas are on screen during the Lion King, then Jafar turns into a snake, when Frollo falls off Notre Dame, when Rasputin falls apart, when Shan Yu pops out of the snow.

Even though he probably doesn’t know why – who does? – he’ll dress up if it’s something he loves. He’ll enjoy the day, every year and know it’s coming. Like his birthday, or Christmas it’s something he will enjoy if we make the effort – if we don’t, he wouldn’t as why we didn’t celebrate.

Mum said he loved the parade, he was smiling the whole time. Was that because he enjoyed the atmosphere or because he got to eat his weekly crisps and drink iced tea? We think the second is probably the hidden agenda, but that he enjoys outings nevertheless. Despite the sensory overload there are moments where he just sits back and takes it all in, he observes, he listens and then we leave.

Mum also said that they had to go ask strangers if they could use their bathroom, and then they left – she still remembers which house.

Halloween can be hard for children on the spectrum. The scary masks, the fabric of a costume, the noise of a toy gun, the colours. So be aware, be careful. Make it easy to be included, make it easy for them to adjust.

Autism Canada was distributing these stickers for you to use when trick or treating –  They shouldn’t miss out on social events just because it’s ‘difficult’ to explain.

*WIAT.com on how to make Halloween less tricky for children with autism

The Mighty on Halloween and Autism Can Be Scary

1

Extr-aut-inary

Extraordinary: Made up from “ex”, Latin prefix meaning ‘out of’ and “ordinary”, as in ‘usual’. Meaning “out of the ordinary”, “unusual”.

I’ve been hearing this word a lot lately.

Nothing is so common-place as to wish to be remarkable.

There’s this unavoidable thing called ‘death’ that makes everyone lose their minds and spend their lives running around trying to be different, trying to be the odd one out, wanting to be anything but conventional. For some its an incentive – it pushes them forward, gives them purpose. For others its a drive that consumes their everyday lives.

Then, on the same planet there are people that are already extraordinary who want to be ordinary; or rather we teach them to be ordinary. We try to make them usual while others are looking for ways to be unusual. We try to define them and put them in a box while everyone is trying to break out of the box.

It can be argued that teaching our kids social skills benefits them, it can also be argued that not conforming them to the imposed expectations of the society they live in benefits the society.

In a world where everyone is trying to be extraordinary, why do we imagesostracise those who are already extraordinary? Why do our kids get bullied, instead of embraced? Why do our kids have to endure birthdays without guests because they are ‘difficult’?

Being extraordinary isn’t about what you wear, what colour your hair is, or how many piercings you have. Being extraordinary is about your spirit. It’s about how you make other people feel. It’s about The impression you leave, how many opinions you can change, how much kindness you can show and how you get up and go on after your world falls apart. It’s about living life for you, it’s about being selfish in finding your happiness, because your happiness doesn’t exist unless the people around you are happy. Does that even make sense?

My brother is anything but ordinary, extraordinary doesn’t even cut it sometimes. He is a spirit that cannot be tamed. He touches people’s lives without even trying. Strangers in the street will catch a glimpse of him, will read about him and he will change them, he will have an impact on them. Children at his school will grow up learning about Autism, they will grow up knowing that it’s okay to be unusual, they will stand up for people on the spectrum because they have experienced a moment in time near it.

His Autism isn’t a hindrance, it’s a message. There’s a reason you cannot tame Autism and it is that it’s here to teach us a lesson. It’s here to show us that being ‘ordinary’ isn’t a choice, it’s an imposition.

There’s not enough room for everyone in the box – so get out, open your mind, learn about Autism, about dyspraxia, about epilepsy, Downs, Tourettes, Aspergers, Parkinsons; that will make you extraordinary.

0

Ashley’s lifeline

Ever wonder how somebody with Asperger syndrome experiences the world? It’s alright for me to sit here and lecture you about how I see my brother seeing the world but let’s face it – I don’t know. But Ashley – Ashley is an Aspie, who writes about being an Aspie. I met Ashley when I wrote “10 Confessions of an Autism Sister” and he told me that he was working on a book, he was moving house, travelling, writing and working with ABC on a short film.

Ashley – as he so eloquently puts it – is an Aspie, trapped in a box “trying to get out to throw the lifeline down to [others] who are in a similar situation“.

Video by Michael Bromage | Ashley Smith | Matt Curnock | Natalie Fernbach |

I’m an Aspie.

My senses are heightened, which makes life interesting.

In this video I’m giving you the opportunity to step into my shoes and take a walk with me down the street so you can experience what I see and hear.

My senses are always on and I can’t turn them off. I find it difficult to filter stimulation from the world and sometimes things can get crazy, but I have learned ways to manage difficult situations.

If you know someone with autism, I hope my video gives you an idea of what they could be going through on any particular day. To learn more about the life of an Aspie, you can read my stories on ABC Open. Search for: Sir Ashley Smith.

0

Back to Ignorance

In July this summer,  Eliese walked out of her home to find her car vandalised. Eliese has a 5-year-old son named Kyler and on the back of her car there is a sticker that reads – “Autistic child may not respond to verbal commands”.

There has been a lot of talk about putting up stickers in neighbourhoods, homes, cars, schools to make people aware that there are children/adults on the spectrum and to alert them – in case of an emergency – that they will have to handle the situation in a certain way. One end of the community says we shouldn’t discriminate against the kids and why should we put big yellow warning signs all around them. The other end says they are tired of having to deal with ignorance and just want to give in. The other end says that we should definitely be allowed to put up warning signs for the safety of the kids, in case guardians are not around.

And so on, and so on. 8336439_G

Nevertheless, back to Kyler. The sticker was surrounded by other handmade stickers that read “Spoiled Brat” and “Undisciplined” – one of them even said “Unetitled” which I’m guessing is either ‘unentitled’ misspelled or benightedness as to what the word actually means. Either way this person could use a dictionary for Christmas.

Eliese has said that Kyler was diagnosed with Autism and three additional disorders over the span of five years, leaving him with developmental problems, inadequate verbal skills and poor understanding. I wonder if the culprit knew – or even asked – before making these assumptions. In fact, I wonder how many people from her community knew – or even asked. Eliese searched for the culprit without any luck. She filed a police report with the police about the vandalism. She had only moved into the neighbourhood a month before.

It might seem shocking to you that people would say this about a kid but my family has been stared at, told to take control of Christos; one woman even took the initiative to yell at him on a plane and tell him to listen to us. Thanks stranger – we would have never thought of asking him to listen. Christo was even banned from a supermarket once because he was putting all the chocolates in order. Sure, the anger makes your ears melt of your face and you feel that you want to scream and that you’re drowning at the same time. How unfair, how utterly selfish of one human to think that it is okay to tell another human how to parent their child. And yet, autistic child or not I am sure if you’re a parent you’ve come across this before. Human nature is the worst and best thing about us.

Eliese probably had that sticker on her car because one day a crippling fear overwhelmed her when she heard about other children with Autism being mistreated (Preach & TeachSeventeen Candles). Because she thought of the possibility of getting into an accident and strangers or the police trying to help Kyler. The feeling that you are the only person who can deal with your kid is so lonely, it’s so desperate. Putting up that sticker was brave – it was a parent pre-empting the unpredictability of life. It was a message she had to put out there for Kyler’s safety, future, well-being for when words are not an option.

To Eliese: You’re both so much stronger than you realise; you will find a way to communicate one day.

To whoever did this: I hope you never get caught. I hope you get away with this for the rest of your life. I hope you never feel proud enough of this action to utter it to another person. I hope you carry this secret forever. I hope you see Eliese every day, the way she struggles, the way Kyler struggles; I hope you see them get stronger every single day. I hope that writing those words was your lowest point. I hope you never have to deal with Autism, because you’re not big enough to handle it. I hope that one day your ignorance will fade and will not be passed on to others. I hope your action shows the world how small your kind of thinking is. I hope it makes them read, and learn and smile when they see a kid throwing a tantrum in the middle of the road. I hope police officers are more careful with dealing children because of what you have done. I hope they talk about Autism training. I hope your community stands by Kyler throughout years to come and that they tell other people about Autism.

130559

Kyler - taken from Google.
1

Back to Love

Following on from: On the Radar – Spectrum Singles

Following on from: Following on from PS Love?

I was on the bus yesterday when a couple sat in front of me and another sat behind me – I was trapped. Almost immediately the couple behind me (Couple 1) started tickling each other and the girl sat in front of me was stroking her boyfriends hair (Couple 2). Let me make the point that I am not a fan of PDA, I am not a fan of eavesdropping, lets just say – I am not a fan of couples. But, one of these two couples moved me so much – they were inspiration.

Couple 1 was quite loud, so after the tickling ended they started talking about a talk show on TV and how they would do on it, then they talked about getting dinner which was a whole complicated thing which ended in less than a minute with one of them getting mad and the other trying to baby talk his way out of it. Yes, i said baby talk.

Couple 2 was very quiet, except for the hair stroking. His head was right in front of me, the windows were steamed up – it was all I could see. PDA makes me uncomfortable and I don’t understand why people are so into it. Holding hands – okay; a peck – okay; anything more and it gets a bit awkward. This couple didn’t start talking until the boy saw a truck and got really excited.love_puzzle

At this point Couple 1 were not speaking to each other – the girl was on her phone making alternative plans for dinner – the woo-ing had ended.

The boy from Couple 2 started talking. He was telling his girlfriend about his life-long dream to become a truck driver. Big trucks though – like the ones that carry other cars. The stroking continued all through his story. At this point, I’m looking at trucks thinking ‘Oh, I would have never thought of it that way’. Then, the girl turns to him, while stroking his hair, looks at him with stars in her eyes and says “[Name] you should never give up on that dream”. She said “You have to try and do everything you can to make that dream come true. You have to try even when you’re fed up of trying, even when everyone else tells you that you can’t do it, you have to make that dream come true. You’ll be good at it, I know you will, and I will help you make it real”.
Couple 1 was still not talking but there were intermittent sighs and shoves.

The boy replied to her by hugging her and telling her she is great, he kissed her hand and said “But I don’t know if they’ll let me’. To which she replied “[Name] you can’t let them tell you what you can and can’t do. They can’t stop you if you’re good just because we are Aspies”. And they giggled. And my jaw dropped. And the hair stroking never stopped.

Couple 1 got off the bus, still not talking. The boy tried to hold her hand, she pulled away and walked off without even so much as eye-contact.

The girl from Couple 2 gave the boy a kiss and they smiled at each other. Then they started talking about something that had happened years ago – they’d been together a while.

If you didn’t know and you had these two couples standing in front of you, interacting and you had to pick which one was the ‘normal’ one – which one would you pick? How much would you let spectrum stereotyping affect your judgement?

Learn about Autism – it’s not what it seems.