Behind the SmileDial

Dear World,
You do not know me but you have seen me. You will have noticed me at the mall, the park or even just on the street. I am hard to miss sometimes, I stand out more than other kids and sometimes I am pretty loud (sorry). I know you see me because I often see you watching me. Some of you watch me out of the corner of your eye, some over the tops of newspapers and some of you just stare as I go past.

Sometimes you will talk to me or smile at me, I like it when people smile at me (especially when I am being loud or making a lot of noise) those smiles make me feel good. Sometimes I do not feel good so anything that helps is awesome. Sometimes people will say hello to me, not very often but some people do. I do not know why more people do not smile or say hello after all I smile and say hello to almost everybody, I like doing this. I wonder why people don’t say hello back. My dad says sometimes people are just rude but I do not care I will say hello anyway because I am not rude. It seems silly that people will stare at me but as soon as I look at them they turn away, dad says it is because they do not understand me. I do not understand them, why do they seem so interested in me but don’t look at my eyes? Dad tells me I should always look into peoples eye as this is the window to the soul, are they scared of my soul?

Sometimes when people talk to me they think I am a baby and talk to me like I do not understand them. This is weird because I am not a baby, I am bigger than a baby and I can understand everything they say but they still talk slow or really loud. Sometimes they talk to my dad about me when I am right there but it is like they cannot see me? Why do they ask him questions about me when I can tell them myself, that is weird. Sometimes people say awful things that make my dad mad, really mad and I see him get grumpy. I want him to not feel bad and I wonder why people say awful things about me to him. I hear these things and they make me sad as well but I tell my dad that everything is ok and I pretend I did not hear them (I did).

I like playing with other kids, they do not seem to ask silly questions but they do ask questions. They ask things about me and I like it when they do because then I can tell them things. I do not know everything but I now more than most people, my dad knows loads of big words that he uses to explain things but i don’t. Adults ask stupid questions but kids ask awesome ones that are easy to answer and afterwards they just go ok and we can get on with playing. I wonder why grownups cannot do that, I thought they were supposed to be smarter than kids?

Some of my friends do not get stared at all the time like I do, they only get stared at when they are being really really loud. People think they are being naughty but they aren’t, the noises and things around them sometimes make them feel really grumpy or mad. When they are being grumpy and loud people stare at them then and say awful things to them and their dads, they just don’t understand I think. If I get grumpy I get loud but not as much as they do.

My dad told me I was different when I was a baby and would always be different, he says I am a different type of perfect (I like it when he says that). He said that in this world there all different types of people and I am just a type of people that is rarer than others, yip I am a rare different type of perfect. I will always be like this and I will always have people staring at me, or talking to me like I am a baby and sometimes saying terrible things to my dad but that is ok. It has to be ok because I can’t change it, dad says I should not have to as it is other people who need to change not me. It is not my fault some people are rude they just don’t know what it is like to be me. If they said hello they would know, but most don’t.

I sometimes wish I could get up and run away but i can’t because my legs don’t work to good, I sometimes wish I could stand up and yell at people who say mean things to my dad but i can’t because I cannot talk and most people cannot understand my sign language. I used to wish I was like everyone else but I don’t anymore because I see that most people are less happy than I am and they do not think things that I think are awesome are. I can see loads from down here in my wheelchair and I hear things that other people think I can’t, it is like being invisible sometimes. I keep smiling at people and saying hello because I like to do that and just because they do not say hello back is ok because that is another thing that makes me a different type of perfect, I am nice to everyone and do not care if you are different.

KB

I hate this. I know hate is a strong word and maybe too strong for this feeling but I struggle to find another that conveys these feelings, this situation and this life. Other words rattle past as I write these words maybe better suited, words that may be less “dramatic” or in your face. Confused, lost, sad, depressed, lonely all these fit yet all these are also just ingredients that create this hate, this feeling.

I have never felt like this before but I have also never been in a situation or place that would create these feelings. This place I am now is not one of my choosing and there were no bad decisions or choices that bought me here and I did nothing to create this place or this life. Perhaps that is another reason to feel this way?, maybe anger is another word that flies past my mind as I begin to write this perhaps anger is a main ingredient to this hate. In the past I have made decisions that have created situations that have been less than ideal, decisions that took me to a place where I felt similar strong emotions. These places and times were of my choosing and I had no one to blame but myself for ending up there, how can you complain about a situation that you created?.

This road I am on now is more difficult than any other I have travelled and not once did I make any choice or decision that brings me here. Perhaps it is karma that carried me here to this place? I look back and wonder what I have done in my life that deserves this. This road is long and stretches as far as the eye can see, it reminds me of an image of a straight road through a bleak desert, a road that continues to the horizon and never gets closer to the end no matter how many steps I take.

On this road there are others with me, those who share this journey with me and each of us struggling to find the strength or courage to continue. We pass others who walk slower and we are passed by others who walk with a stride full of purpose as they bend their heads against the wind and push on. Like the hare and the turtle these people will often be seen further up the road, exhausted and crawling as their energy finally wanes and they begin to lose faith. There are many places to stop on this road, places where all hope is gone, truck stops for the lost and here is where we will all stop at least once.

It is ironic that at these places you will find tiny triumphs when you believe there are none. These places of the deepest despair are where miracles happen, a gift from Gods to pick you up just enough to walk on one more day, just one more day. As you stare at the road shuffling your feet from one step to the next your tears and pain often obscure visions of beauty that lay beside the road. The most delicate flowers grow here, in places where even angels fear to tread there is beauty. These places may be few and far between but they are there, somewhere in the distance. If you take a moment to look for them you will see them, sometimes you will walk for days on end to find one but they are there, like fairies in the bottom of the garden. If you believe you will see them but only if you look hard enough.

We walk these roads because we want to, we can of course decide to walk no further but we are very aware if we stop walking we will not move forward and we will not find any of the awaiting tiny triumphs. We walk not because we have to, we walk because we want to because there are only two choices, carry on or give up and giving up will only make our journey easier. We do not take each step to reach an end, there often is no end and no destination or oasis. We walk not for ourselves but for those who need us to continue this journey, our children. Our different type of perfect children, our children with special needs. We take each step with their tiny hands in ours, we are not walking our journey we are escorting them through theirs. Each step we take is fuelled by a love as pure as any other, a love all parents have for their children. We carry those who cannot walk, we talk for those who cannot speak and we hold them as the wind blows so strong we are sure we will blow away with the sand on the side of the road.

I hate this place. I hate the pain and the days that melt from one to another and can only days are told by what doctor we see and what therapist is coming.  I hate being here but it is not about me, it has not been about me for many years now. I often stop at the truck stops along the way (I guess if I am writing this I am at one now) and I lose faith and all I see is the road ahead a road that seems to lead nowhere. It has been many days since I have found a tiny triumph growing on the side of the road and my feet tire and my soul aches. It is when I feel this way that I am lucky to have my child with me, this child I am supposed to be protecting for in her eyes I see a thousand tiny triumphs, in her innocence she sees the road different than I. Her road is not a long endless desert her road is like any other child’s road full of light and beauty where fairies are real and dreams come true.

I will stand up and I will hold her tight and relish the feeling of her little arm on the back of my neck and the warmth of her breath on my skin. I will look into her eyes and seek the courage I need to move on, I will see the fairies dancing in her smile. I will let her lead me for some of the journey and she can show me where the tiny triumphs grow on the side of the road, beauty that I miss as I wrap myself in emotions where beauty seldom dances.

I hate this place but it is not about me and what do I know of wonderment and beauty when compared to my child? How can I teach her to see the beauty in everything when I cannot? How can I tell her to search for fairies when it has been a long time I believed there were any? When I began writing this I was standing on the side of the road with my head in my hands wondering how to keep walking, now I realise I was looking the wrong way. The road is long and often dusty and barren but if you look at it like a child you realise you are being lead by a spirit purer than any other, that of your child. They are telling you where the beauty is, you just need to listen.

I hate this place but I am blessed to be walking it with my beautiful child, perhaps it is her teaching me how to find fairies at the bottom of the garden.

Everyday I try and forget my daughter is different, and often this is easily maintained this sense of normality in the un normal. All the things we deal with are our reality and normal, it is just the way things are around here at our place in our lives. What is normal anyway people ask, normal is being able to do the things the majority of people can or am I over simplfying it?. If that is a correct definition then we are far from normal. I know my family is un normal, we are very aware of our daughters “issues” and we are fully aware that she cannot do things most normal kids can. We see this everyday over and over again but I must stress yet again that if the abnormal is your normal then as far as you are concerened your ab normal is normal, does that make sense?. Sometimes the ab normal is glaring and I find myself noticing how ab normal my family is, at the park when we watch other kids play is the best (or worst) example. I hate going to the park, it provides an hour or so of in your face reminders that our kid is different on many levels.

So each day we live in our normal ab normal life and go through the dialy motions and rituals that make our ab normal normal become just another ab normal normal normal day. This is ok, this life is ok and I am at peace with it 70% of the time (ok sometimes more and sometimes less it all depends on what type of day we are having). But sometimes the fact we are living a ab normal life is thrust at us in piles of paperwork, doctors visits and meeting after meeting with experts on a million different things. eye experts, speach experts, brain experts, therapists, support workers and so many others. Just let me say I think all our exopert experts are awesome and we are lucky to have them in our lives helping us to make our daughter be al she can.

Ok, so get to the point Kelly (talking in the third person is a sign of insanity). My daughter needs stuff to do normal stuff more normal like than if she did not have the stuff. She has stuff for her arms, her legs, her neck, her eating, her bathing and pretty much everything that helps her do normal stuff. I HATE THIS STUFF.

I hate this stuff so much, each time we get more stuff I get shitty, I go quiet and I smoke lots of cigarettes, I get grumpy. My daughters mother knows this so when we get new stuff she lets me get shitty and she lets me yell at the stuff, I hate it all. I am aware this stuff is needed and it will make my daughters life easier or better I know this and I am so happy we get the stuff but I still hate it. Today we got a chair, not a normal sit and eat dinner chair more a Star Trek super duper adjustable chair with levers, adjustment handles, straps, wheels and lots of buttons and gadgets. This chair is so my daughter can sit on the toilet, my daughter needs this chair so she can sit by herself and take a dump. Awesome, she can get a little more independant which is good news, the bad news that makes me really grumpy is that she needs a “machine” to sit and shit. REALITY BITES and sometimes when you pull your head out of the sand you wish you had just left it in there, nothing bad happens under the sand, I love the sand.

Every piece of equipment we get hits me like a ton of bricks, it removes the comfortable normal ab normalness in my life. It makes me face the fact my daughter is not normal, she is different and no matter how normal I try to make my ab normal life there are always reminders that things are ab normal. I hate these reminders, I hate the fact we need this equipment for something as basic as sitting on a toilet, I hate the fact I am so grumpy each time some new contraption arrives at out house. Please let me stay with my head in the sand a little longer, please?.

The seat arrived this morning, grumpy. BUT, making e even more grumpy is the other slap in the face your ab normal normal is far from normal normal arrived yesterday in the mailbox. We get accessed by ACC on a regular basis, thet visit our home and see what is happening. They look at how my daughter is geting on, what suport she needs, is there anything that will make things easier for her and us, and they write a 25 page report outlining everything they find. They talk to my daughters support workers, teachers and anybody who is involved in her care and therapy an dthey then write the report. I HATE THAT REPORT.

Oh dear, I am fueled with grumpy this morning and this post will no doubt reflect this, hang in there I get grumpier and then I will feel better for venting and we will finish with a nice cutesy moment to make us all feel better, much like tv news shows do, if you show a farting panda story after the plane crash stoty everyone feels nice and happy again aaaah.

So the report is an amzing insight into our daughter, her progress (which is amazing due to my partners amazing hard work) and it tells us how she is tracking against normal kids her age. Each area is given a number score, all the numbers are added up and we get a nice number to keep things tidy and easy to understand. We can then compare this number to that of a normal child her age, fuck. Ok, that is a awful report to read as it does compare my daughter to other kids and it shows GLARING gaps between what she would be doing (if she did not have her brain injury). I alays try not to compare my daughter to other kids, if you do this it will all end in tears. I am fully aware my daughter is different and I am comfortable with that, this is just the way it is. But soemtimes there are times when it is so very obvious my daugter is different, at the park is the perfect example. Asd son as you see other kids doing other normal kid stuff that she can’t do you always have a moment of sadness. I am sure this is normal and allowed?

When you get a huge report that puts these diferences into a number that you can compare with another it makes the diference between the normal and ab normal oh so very clear. There it is, in black and white on official letterhead so it must be real very real. My daughters score were awful, if it was the results from a school report she would be grounded for months. The numbers tell us how far from normal she is, she is a long way off normal maybe even further than I thought. It is all there, what she should be doing against what she is doing and let me tell you her number is way lower than that of a normal kid, she is not normal though is she. She needs a over engineered seat to go to the toilet, it adjusts so as she grows we can make it fit (how many years will she need it, oh god please let me put my head in the sand).

Today and yesterady I was reminded that my daughter is not normal, we are not a normal family. These reminders make me grumpy, well I say they make me grumpy but the anger is just another manifestation of another emotion, a terrible sadness. These pieces of stuff and reports are like a drill sergent yelling in your face “YOUR DAUGHTER IS NOT NORMAL!!!”. My daughter is not normal.

That makes me grumpy and sad in depths so deep in me I have no idea where they are, I just know they are. I will be grumpy for a few days, this is my routine and we all know it well. My partner will cry, she will get it all out and accept these things better than I will. I am ok with the fact my daughter is a different type of perfect, I just do not want to be reminded our ab normal normal is so very very far from normal normal.

Panda Fart.

 

KD

Yip as the title says, woo hoo. I have just found where spam messages go, the spam message folder (go figure). In there I found messages from people who have written to me, they are reading this blog ITS ALLLIIIVVVVEEEEEEE!.

I wondered if anybody was reading my words, the thoughts from my cluttered head and it seems at least six people are. Hello. Thanks for popping into my head, please keep your arms inside the ride at all times.

I hope there is something in here that makes you smile or cry or just fills in a few minutes as you stroll through the world of the internet. Please message me at anytime, all six of you can pop over for coffee anytime.

Kelly Dugan

 

Anger, that is what it is.

I have spent 3.5 years feeling like there is something not right, something in my head has shaken loose because I am different. I am of course aware there are a thousand reasons to have a loose screw since the birth of may daughter, no one can face the challenges I do and not have it screw with their melon a little bit. The day that guy came into the room and told us we were now the parents to a child with special needs, the fight for answers, the daily struggles that make life so much more difficult and the raft of emotions I face on a daily basis, good grief I am surprised more screw have not come loose. I heard that if you accept there is a problem it is half solved, woo hoo I am half way there.

Now I do no talk about my feelings and it has only been since peopel have started printing my articles that i have begun to open up. If I can open dialogue for others by speaking my own truths then that is a good thing. I run a charity and it is my job to help people, if talking like this helps then it is in my job description to do it. I do not want to talk to a professional, I have no problem with those who find comfort in doing so but it is not for me. So I have been self analysing myself, I am sure if I waited I would find an answer to why my head rattles with loose screws and I have. It came to me in the shower, the answer. I am angry, really really angry.

I am not sad, depressed or anything else, I am just angry. As soon as I realised this everything started to make sense and I can now begin to fix the problem and address the issue. I have saved thousands of dollars in therepy costs, I am cured.

Oh, so knowing what is wrong is not enough to cure it?. Bugger. Ok so a little more digging into my head, here we go…

I am angry at everything, yip everything. The list would be so long there would be no point starting to write it so when I say everything I mean it. I have been angry for 3.5 years and I think I am getting angrier, and grumpier and less patient and the many other side affects of being angry. I am not physically showing my anger, I do not punch or yell or throw things around, I just simmer and the simmer is reaching a boil, thank fuck I discovered my problem before things got out of control.

Being angry explains everything, I write about being lonely in this world of raising a kid with special needs, I have written two stories one of which has been shared thousands of times all over the world. BUT, I dont want to see any one and I am pulling further away from my friends and family, yeah I bitch I am lonely but I do nothing about it. I dont want to be around people anymore, when I am I have to work so hard to not be angry and be the guy they expect me to be. Anger seems to be self feeding, one thing makes me angry and I pull away from something that could make me less angry, then I get angry that I pulled away and get angrier and round and around I go. Getting angrier.

I fought the Canterbury District health Board for 3 years to get answers to what they did to my daughter. A few weeks ago the last stage of this battle took place, I had the opportunity to address the entire board to tell them my story and request they made changes to ensure their policies are changed. At the time I felt an amazing feeling of pride, I had fought so hard and I made it to the very top and I had won, David can beat Goliath after all. But now I have no one to fight.

The centre of my anger must be what happened to my daughter, every single time we are having a bad day I get angry at the doctor who did this and the hospital that tried to cover it up. But now I have beaten them, I cannot find a reason to vent at them anymore, where can I direct my anger now?

How can I be less angry?, just stop being angry?

Just stop it, I think the momentum is well and truely underway now flicking a not angry switch is not possible. Maybe I could look for ways to expell my energy, join a gym maybe take up running, or pottery (Unchained melody playing on the background perhaps?). Oh that’s right, I can’t get out of the house for such hobbies, I work, I look aftre my daughter, I eat (if I have the energy) and I sleep. Repeat, and repeat and yip repeat. Maybe I do need some help, someone to teach me how to find the off switch, maybe I need to talk about this with someone who went to uni and knows how heads work?.

Is admitting an issue enough? Nope, I have spent ten minutes writing this and hang on let me check……, stil angry. SHIT!.

Ok, so breath deep and think happy thoughts, that is much better. If my anger is all simmering inside it is ok, I have this under control, I can be nice an dsmile at people, I can engage in soft porn level road rage (no body contact just rude gestures), wow that is a weird comparison. Soon I will find the off switch, I will find the way to switch off the angry and then I can be um  less angry? Maybe I will sit on a couch and answer the questions of a trained head shrinker? Maybe I will write this and know that somewhere in cyber world there will be other parents with kids who are a different type of perfect who are really angry, is this not just another manifestation of our worlds, maybe our abnormal in teh real world is ok here, in our place.

I will play with my daughter (she does not know I am angry), talk to people on the telephone (who cannot tell I am angry) and get through this with my partner (I think she is angry as well).

It is ok, yip really it is ok. Not fucking brilliant but ok is better than really shite, I accept mediocre, yip that will do fine thank you.

Now piss off, I am grumpy. 

The only thing that will come to you if you do not work for it will be dissappointment. Dreams can be as high as the stars, goals need to be closer and just out of reach in the now. Don’t mix the two or you will be standing looking at the heavens forever wondering why you never had what you wished for. Goals can be obtained if you just streatch a little longer and a little higher.

Wish for a Aston Martin

Be stoked with a new Toyota.

You can’t afford the insurance on the Aston anyway.

 

 

Poverty should be judged in the most simple terms,

if you cannot have the things you need to live a normal life (health care, a home, food to eat, education for your children etc) that is poverty.

If you cannot have the things you want but have the things you need you are not living in poverty. Not having money for a bigger house, a nicer car or a new TV is not poverty.

The Wrong Child

(Berry/Buck/Mills/Stipe)

I’ve watched the children come and go
A late long march into spring
I sit and watch those children
Jump in the tall grass
Leap the sprinkler
Walk in the ground
Bicycle clothespin spokes
The sound the smell of swingset hands

I will try to sing a happy song
I’ll try and make a happy game to play
Come play with me I whispered to my new found friend
Tell me what it’s like to go outside
I’ve never been
Tell me what it’s like to just go outside
I’ve never been
And I never will

I’m not supposed to be like this
I’m not supposed to be like this
But it’s okay

Hey, those kids are looking at me
I told my friend myself
Those kids are looking at me
They’re laughing and they’re running over here
They’re laughing and they’re running over here
What do I do?
What can I do?
What should I do?
What do I say?
What can I say?

I said I’m not supposed to be like this
Let’s try to find a happy game to play
Let’s try to find a happy game to play
I’m not supposed to be like this
But it’s okay, okay