While there is life there is hope

 

Yesterday after doing shadow puppets on a school projector screen, my son Kai was grabbed from behind by his Science teacher, pulled out of his chair by his hoodie, and dragged across the room, hitting the door on the way out and being yelled at with, “I am sick of the stupid choices you make.”

Whilst I don’t condone my son’s behaviour I cannot accept that his teacher’s response was in any way acceptable especially given Kai has Aspergers.

At present it seems the school are simply demanding an apology from the teacher. Kai is expected to accept the apology and move on. I am currently doing everything I can to help Kai through it dealing with the humiliation, degradation, physical asssault, the insult and the fear he currently feels in regard to someone who should be an advocate of trust. It is important the he understands that it is NOT okay to hurt anyone no matter how frustrated you might be but I am also trying to help him become empowered and learn how to heal and deal with life’s bumpy terrain.

I have spent hours up there with the principal, the psychologist, his special ed teacher and of course Kai. I had promised this list to his Social Studies teacher last week (a stark difference to his abusive out of control science teacher, she had said to me, “Please teach me everything I can know about Aspergers and any thing I can do to help him succeed” Bless her!!!!) In an effort to turn this into something good I have published this here in the hope of educating anyone else who would like to learn and understand what it is like living with Aspergers – an often mysterious diagnosis because sometimes, the high functioning kids like mine can “fly under the radar”. It’s only those close to them that see the full extent of their disorder.

I write this in the hope of educating carers and encouraging them to have patience in nurturing our babies and acknowledging the “differences” that make them so “special”, and understanding that we do not yet know the amazing impact they will make on the world if only we can help them get there.

Please share and spread the word!

This is what I prepared for his teachers so they can understand Kai (and others who come after him) and help him succeed:

My name is Kai. I am 12 years old. I have Aspergers.

Aspergers is not like having diabetes where you need to take insulin to make it right. Aspergers is not like being in a wheelchair where you can see exactly what that person can and can’t do. Aspergers is different for every single person who has it and worst of all, it is different to me all the time. Just when I manage to understand, control or overcome some of the harder parts of it something new happens and I have to start all over again.

Some people wouldn’t even know I had Aspergers cause I am really good at hiding some of the hardest parts of it but also because I am what they call high functioning. Other people call Aspergers autism and then people always think of Dustin Hoffman in Rain Man and even though my mom and I laugh and joke about that I am nothing like that and exactly like that.

What you might not see but need to know about how Aspergers affects me:

I like things being the same which makes every day difficult especially in middle school where I have to change classes many times a day. When things change or get too much I usually act inappropriately – not because I choose to be naughty but because sometimes I just can’t stop.

I don’t like to be touched. My mom has taught me how to do some touching but I don’t like it. It makes me feel uncomfortable and sometimes it feels 100 times harder than it actually is so if you poke me in the chest it really really hurts. Please don’t hug me and definitely do NOT hold me or grab me.

I don’t like germs so please don’t touch my food, my drink, my plate, my cutlery, my pens and please please please don’t have a bite of anything I am eating cause if you touch it I won’t eat it.

When you yell at me I shut down. I don’t like loud noise anyway so when you get in my personal space and yell at me it feels like there are a hundred people yelling at me.

When you rush me I get stuck and then melt down. I can’t think or see beyond you rushing me. Rushing me only makes me go slower.

I sometimes get stuck on things a bit like a broken record. Sometimes I just can’t get a thought out of my mind. Sometimes I get the way things will happen stuck in my mind and if I suddenly find that is not how they will be I have trouble coping with that. When I was little I used to cry and scream and kick and cry and hide under my bed or run away from school. Now I usually just go quiet and unload to my mom who tries to make things right the best way she can. She is always fighting for me but sometimes explains that sometimes there are some things you just can’t change. Every day I learn that the world outside my world has very different rules and expectations. That is so hard and scary and overwhelming sometimes.

Sometimes I cry a lot about having Aspergers cause things are hard. But my mom reminds me that some kids have cancer and their world is hard too in a different way. I know I have to find the best parts of this but sometimes I am just Kai and 12 and the world seems too big for me. That part makes me normal and just like everyone else.

Sometimes I do the “wrong” thing but it is right for me. If you make me stand in a line and everyone is pushing up against me I will step out of line. That might look like I am not listening or am disobeying you but I am just coping the best way I know how.

Sometimes I do things other people are doing without thinking if it is wrong or right. Sometimes I do what my friends are doing because I desperately want to fit in and have friends.

You might explain to me all the reasons the sky is blue. Then there might be a test on it and I can’t tell you whatever it is you said after you told me the sky is blue because all I could think of was that I love the color blue and I have 10 blue t shirts and 4 blue shoes and 3 blue hats and what were you saying? Did I tell you I LOVE the color blue? Another group of people who love Blue are the Blue Man Group and now they are famous so loving the color blue can be a good thing too!

I love the number seven. Last year I had to tap things seven times or pop my lips seven times to make things right. Sometimes I got yelled at by my teacher for being loud or annoying because I was just trying to make things right – everything in sevens felt juuuust right.

Oh and I can randomly count the numbers of things without even trying. A bit like Rain Man which is why my mom and I have a joke called “247 matches” where we say over and over again “247 matches on the table….” like in the movie. I know there were 72 steps down to the pool in the place we lived at in Sydney. There are 128 shutters in my apartment. When I went on a road trip I counted the road kill and came up with a list of 14 dead kangaroos, 13 squished wallabies, 8 flat rabbits, 5 rotten wombats, 4 battered birds, 2 maggot filled  foxes and 1 not so prickly porcupine. If I was a tax accountant I would be the perfect person to save you money on your tax return. Some people call it strange, my mom calls it a talent.

I can not look you in the eye. I don’t like it. I HATE it. HATE HATE HATE it! Please don’t make me because I won’t hear anything you say.

I don’t like to nor do I even think of shaking hands and most times I don’t even remember to say hello. Even at 12 my mom has to remind me to do these things. Sometimes I turn my back on you or walk away while talking cause it takes the pressure off.

If things get cluttered or messy or too busy then I shut down. My bedroom is the neatest cleanest room in the house. However I struggle to organize my school work. There are just so many rules to remember that it’s a bit like white noise to me.

Sometimes I have to have things a certain way for example you might want me to save paper and write on every line but my brain needs space to think. I’m not breaking the rules but trying to make things work.

Sometimes the light bothers me. Sometimes I can see light patterns that no one else will notice and it bothers me. Sometimes I will notice noises no one else can hear and all I can do is repeat them – we have a windshield wiper that makes a certain noise that is 3 beats, 2 beats, squelch…..When it rains I make the noise with the wiper all the way to our destination. I can’t stop. If you make me I will probably do it under my breath. I just can’t stop.

When my hamster died I cried and cried and cried for hours. I loved my hamster and can tell you everything about them. If you tell me someone you love died I will probably not react and just keep talking about something else that doesn’t have anything to do with you. It’s not that I don’t care or that I don’t care about you but it is hard for me to make a connection with anything that is not DIRECTLY on my list of things I know and talk about.

I don’t feel things the same way you do. Sometimes I feel more, sometimes I feel less. But I am human and if you hurt me I WILL feel pain.

At any given time I usually have just two or three subjects I am obsessed about. Usually I am an expert on those particular subjects. Nothing else really exists outside of my field of interest. It’s not that I am rude or selfish but it is like being locked in a cardboard box that is taped up – it can only hold what is in it. Nothing can get in or out. When I am an expert in my field and making millions like Steve Jobs(RIP) did then people will call me a genius or a specialist.

I like to wear the same clothes over and over and over again. On bad days if I don’t have whatever article of clothing that currently makes me feel safe then I can’t get past it. I just can’t. It’s easy for you to say I should grow up or that my mom should discipline me but that doesn’t make any difference. Sometimes there are walls I just can’t climb over. I try really hard but sometimes nothing works. Vincent van Gogh walked around splattered in paint wearing the same clothes over and over and went so far as to cut off his ear. His behavior was strange but he is considered one of the greatest painters of all time. Imagine if his spirit had been crushed so much that he couldn’t be free to be all that he could be?

Some of the best dressed most nicely groomed people in the world are the meanest, nastiest, ugliest people on the inside. My mom tells me again and again beauty comes from the inside out and is fashioned with kindness, love and humility.

Sometimes I flap my hands, suck my hair, suck my clothes, hide behind my hair, tap my pen, pop my mouth, make clicking sounds, click my fingers, clap for no reason, say weird words or sounds. I am really good at hiding it but if you look closely you will see my fingers always moving or my feet always tapping.  Sometimes I hold my hands in fists so they don’t tap or flap. Samuel Morse used to tap things and invented a language that he tapped to – it became Morse code and has saved thousands and thousands of people’s lives. You never know when something strange will be turned into something that can change the world.

Sometimes I don’t notice what everyone is doing or know what I am supposed to do. For example, when people line up for something, I don’t think to line up behind whoever is last in line. Sometimes I will just stand nearby. Or when you go up an escalator and everyone stands to one side so people can pass I never ever ever think to do that. People think I am rude but I just don’t notice. Most people naturally pick up on the thousands of cues we need to seem “normal” in society. Because I am “high functioning” I have learnt a lot of them but some I just don’t get. And sometimes I just go too far cause I don’t live by the same boundaries as others when I am caught up in the moment. However I am learning that there ARE boundaries and RULES but once again don’t judge me please just TEACH me.

Sometimes you will say, “ Did you hear my mom had a baby?” I will reply with “I really love going air softing.” I don’t really get how conversation works unless it is about my stuff. I often interrupt but it’s not that I am rude it’s just that I don’t notice – it’s kind of like being deaf or color blind – there are some things I just can’t see or hear the way you do. As I get older I learn more and more how to “be” in society but that is an extra load I carry on top of the school books, classes, lessons, information and expectations required of me to get through. Wow. I’m freaked out just thinking about it let alone living it.

I love jokes but I don’t always get them. Sarcasm is something I just hear as insults. When you hurt me I hurt DEEP!

Sometimes I say things that hurt you – Cause I speak the truth and don’t always realize that not everyone does that. In court they ask you to speak the truth, the whole truth and nothing but the truth so I don’t understand it any other way.

I hate and cannot understand hypocrisy. I don’t lie and I hate people who do. I hate injustice and cheating. It is wrong. I LOVE the rules as long as everybody sticks by them. Rules make me feel safe – a little like laws. Lying upsets me greatly because I get very emotional if you say something that is not true. However sometimes I say things that are “my view” of things. It might not be how you or someone else sees it but it is “my truth”. Hard to explain? Try living with it!

When I talk I say things the same way in the same tone with the same pitch. If I am stopped I have to start over again. Sometimes I cover my mouth or my eyes. Sometimes I sound a little like a robot. I am not mumbling or being rude it’s just the way I am – I am not a big fan of having to talk cause it’s hard for me. I don’t like it unless I am talking about what I love and then you can’t shut me up.

When I believe something, it is really hard for me to change that. I get STUCK on a thought, feeling or belief. I can’t just change how I think or feel because you tell me to or because it makes sense to. It’s a bit like trying to tell someone who only speaks Japanese to suddenly speak and understand English.

Sometimes I say things that are rude or obvious that other people wouldn’t say. Same as the escalator situation – I just haven’t noticed or remembered that most people don’t say things that way. If you tell me I am wrong please don’t be angry, just explain it to me – sometimes I DO learn quickly or the first time but other times it just takes me a little longer. Patience is a virtue.

I am really bad at tests. There is something I just can’t translate. Sometimes there are too many things on the page, sometimes there are just too many words and even though I might actually know how to do it I just get overwhelmed and flunk almost every single test I take. I am NOT stupid. Please don’t ever call me stupid. Sometimes the information is in my head but it’s like a locker – if I don’t have the combination I just can’t get my stuff out. Please don’t make me feel bad about that. I can’t help it.

Sometimes I just can’t touch some things. I can’t touch suede or velvet. Please don’t make me. Sometimes I can’t touch paper when my hands have been wet.

It took me a long time to tie my laces, use scissors and to use a knife and fork. I had to get OT to do it. My handwriting is sometimes great, sometimes not. I try really hard to make it neat but sometimes there isn’t time.

Sometimes I am lost in my own world. You will call my name and I just don’t hear you even if you say it again and again.  Sometimes I think I am listening and understanding (or at least trying to) but then when it comes for me to “play it back” I can’t.

There have been times in my life when I didn’t wash for days and then washed three times a day. I would rather wear a dirty shirt that I love than a clean one I don’t. Sometimes it’s the difference between getting to school or not. It’s not that I’m spoiled or stubborn as some people with no compassion or understanding believe. But sometimes you need a pen to write a book and so you will use anything to just get the work done! My mom calls it “picking your battles”.

I make friends easily but keeping them is harder. Because I get stuck on things and just talk about what I like or get obsessed about, some nasty people get bored or frustrated with that and call me names or pick on me. Some horrible people have called me retarded. I am not retarded. I am different and different is not a dirty word – my mom calls me unique. Einstein saw the world in such a weird/different way that he became a scientist whose theories are still being proven today. I am clever at many things and have talents in certain areas that adults spend their life trying to master.

I can play music by ear. I taught myself saxophone and clarinet. I taught myself how to play “Funky Town” in half an hour the second day I had my saxophone. In Australia I was put into senior band without being able to read music. No one knew, not even my music teacher. I am about to teach myself piano and guitar. I love animals and they love me.  I have a knack for languages and am teaching myself Spanish. My new passion is photography and because I see the world in a different way to most people I take photos that no one else would.

 I am an extremely talented artist and was drawing three dimensional correctly shaded pictures at the age of 3 but I stopped drawing at 5 because I couldn’t get my pictures right. I have just started drawing again. My mom is very happy and hopes that I remember how talented and clever I am at the gifts I have been given.

I really really really want friends, I want my teachers to like me and believe in me. I want to achieve and succeed. I want to feel clever. I want to love and be loved. I am 12 years old. I am Kai. I have Aspergers. I am ME! I live in a world FILLED with DIFFERENT people of all types, weights, shape, color, creed, religions, professions, diagnoses, disorders, desires and disciplines: therefore being DIFFERENT makes me the SAME as EVERYBODY else!

EVERYBODY IS BEAUTIFUL!

I am beautiful.

I am Kai.

See what happened next……………………. http://wp.me/p1L4ip-6K