Reality Bites & Panda Farts

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.



Woo Hoo

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


Shrinks and Anger Issues

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.  :)

My Dream Toyota

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


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

The Guy

I met him when I was very young
In playground times of laughter and fun
He was there when I learnt run,
This guy I met long ago.
He stood by me through thick and thin
Never left and never gave in
He helped me lose and helped me win
This guy I met long ago
We saw the world but came back again
Searched for a paradise I was already in
Wiped my tears returned my grin
This guy I met long ago
He was there in needles sting
Looked at me with eyes pinged
He said no we have alread been
This guy I met long ago
In drugged haze of early days
In lovers embrace and easy lays
Lonely nights careless days
This guy I met long ago
When death was better than living
When razors teeth were bidding
He was there but hidden
This guy I met long ago
He sits with me when I am all alone
Boiled kettle watching is my telephone
All these things that he has shown
This guy I met long ago
He knows me more than anyone can
He sees that I am merely a man
He knows I do the best that I can
This guy I met years ago
When death comes he will follow me
Pay the boatman cross the sea
He is myself and my destiny
This guy I met years ago.

The Club

Welcome to the club,

Welcome to the club, the club nobody asked to join the parent to a kid that has a special need (a diferent type of perfect) club. There are no secret handshakes, no joining fee and everybody is welcome so welcome.

If you have just heard about this club then most likely you have just found out that you eligible to enter, you have just found out you are going to have a kid with a disability or illness that will change everything for you, your family and of course your child.
If you have become eligible without knowing you will be no doubt be caught in a whirlwind of activity, your child may be in intensive care maybe in room one (where the most fragile kids begin their journeys) or maybe at room 5 (the “departure lounge where you are almost ready to go home). You will have doctors coming to see you to talk about your child so you know what is going on, this seldom works as you are struggling to hold on let alone try to understand the words and terms they use. You will get visits from social workers, priests, nurses, family and friends but none of them can make this place you are in feel ok, it is ok to feel this way.
Everything has changed, everything.
I began my journey like you have, although every journey is different in many ways the fundamentals are the same for all us parents in this club. You have to rethink everything and try and find some stable footing in a place where there is very little stable ground. You will be facing emotions that will wash over you in waves so strong you cannot stand up and you want to run and scream. You will be angry, scared, lonely, confused and lost and every one of these emotions will continue to wash over you, today tomorrow and always. You will get used to these things, you will learn to control these feelings and you will find stable ground, eventually.
Membership to this club requires a moment in time where you stand by and watch everything you expected fade away. You will need to rethink everything and start a plan on how to best get through this, you will get through this one way or another, you have no choice. You will find strength you never dreamt you had, you will do this. Breath.
None of these things are important now as you will have a lifetime to come to terms with these things. Stop for a moment and breath. This is the road you are on. It will be ok. Breath and face each minute at a time, you will live by minutes in the beginning, then hours, then days and eventually you will have time to look beyond, that time is not now, breath. Your baby may be in a little plastic box attached to machines, wires going in, coming out and you will be watching them throuh the plastic aching to hold them. Like everything that time will come, you will have “skin on skin” time when you can whisper stories into your childs ear, stroke their skin and fall in love with the amazing human you have created.

They will tell you what to expect, what your child may or may not have, what they may or may not be able to do and in some cases if they may or may not live. You will have many conversations like these, today tomorrow and forever, you will also learn with time that those experts are often wrong. Statistics are broken and children excell even when others believe they never will.
Wish upon as many stars as you need, the stars are endless.
Cry, cry as much as you need to it is ok. Scream and be angry as much as you need to, it is ok. Find people who have been where you are now maybe a week ago or many years. Only they will truely appreciate what you are feeling, nobody can possibly comprehend what you are feeling and facing, welcome to the club. I have been a member of the club for 3.5 years now, I still recall the day I became eligible to join like it was yesterday. I remember the smell of the rooms, the noises of the machines, the feeling of reaching into the incubator to hold my daughters tiny hand, I recall the moment the doctors told me my daughter was a different type of perfect (he used another term “brain damaged”) and I recall feeling so very alone.
You are not alone on this journey, there are thousands of us in the club already. Each of us knows everything you are feeling we feel it in our souls because the feelings will always remain. The journey is long but there are amazing things to discover along the way, you will find joy that others will never experience. You will be ok, breath just breath. Get past the next minute, one at a time.
Welcome to the club, you are not alone.

Kelly “Boy” Dugan
Founder SmileDial NZ INC (The Club)

It seems wanky to post this but it is an importnat part of the journey this blog is about.20150407_121013 Congratulations

The regional judges of the Kiwibank Local Heroes Category as part of the New Zealander of the Year Awards 2014 are proud to recognise the contribution you are making a positive difference to the lives of others by rewarding you with a Local Hero Medal!

Over 230 nominations were made in this category and over 130 medals will be awarded to worthy recipients such as yourself at special public events held throughout New Zealand later this month.

We hope you, your family, colleagues and supporters will be able to attend the presentation closest to you as below:

Date: Wednesday 27th November, 2013

Time: 5.30pm Refreshments / 6.00pm Welcome & Medal Presentations

Venue: Legends Lounge, Addington, Christchurch

Light refreshments will be served from 5.30pm with the presentation commencing at 6pm.

Please RSVP by email or free phone 0508 692 927. When you RSVP can you please inform us of any family or friends that may wish to attend the ceremony with you as numbers are limited.

All Local Heroes who will be awarded a regional medal are currently being considered by our national category judging panel for the Kiwibank Local Hero of the Year 2014. The top ten semi-finalists will be announced later in December and if this is yourself, you will be notified. The winner will be revealed at a very prestigious gala presentation event at the Langham Hotel in Auckland on the 26th February 2014.

If you have any queries please don’t hesitate to contact me.

Kind regards