Friday, December 28, 2012

why "you deserve it" makes me mad

"You deserve it".

Does anyone else see and hear this phrase thrown around?

I've been seeing it a lot lately. The conversations go like this (I'm not quoting anyone specific here...):

"We are heading off to (some amazing location) without the kids for a holiday"
"Have a great time- you deserve it"


"Had a great Christmas with the family, got heaps of cool presents."
"How lovely- you deserve it"


"(Childs name) was awarded (blah blah blah)"
"Fantastic! S/He deserves it"

It makes me mad!! 

You see, when I see that phrase "you deserve it" it starts off a train of thought for me that I find difficult to process.  

When we deserve something, by definition it means that we have done something to earn the outcome we have, right? 

So, by extrapolation if we don't get something, we didn't deserve it..... yes? 

Or even, if we get something bad, or difficult or challenging, we did deserve it.

Can I just say, I have not been on a holiday to any location, let alone an amazing one for about 10 years. When we last went on a holiday we took the kids. And I'm wondering what more I have to do in my life to *deserve* a child free holiday like so many other people take every year? We did manage to have a night away child free a few years ago to celebrate a wedding anniversary... which I guess counts. Sort of. 

Also, for the record, we don't really have enough money to be buying heaps of cool presents at Christmas time. And this year we opted out of attending family gatherings for Christmas because of how difficult it is with all the different needs going on in our family right now. Can anyone tell me what we did to deserve all the complications in our family that cause that situation?

To be clear, it's not just my own jealousy that is the problem here- I have an issue with the injustice of this sort of thinking too. What about all the people in the world who don't even get to eat every day, let alone have a house or job? They must look at me and wonder why they don't deserve the good things I have. What did they do to *deserve* that? How about people born with disabilities that rob them of the privilege of movement, or speech, or the ability to maintain social relationships easily? Do they *deserve* that?

Of course I am proud of my kids when they receive awards, but who's to say there wasn't another child who worked equally as hard from within the constraints placed on them, but just didn't quite manage the extra few marks to receive an award too?

I am not saying we shouldn't express happiness for other peoples good fortune. Not at all!! But can we please think about how our words sound to those who didn't "deserve it" before we open our mouths?  So many of us struggle with our everyday realities, and press on with little to no external reward. 

How do you think it feels to hear and see other people awarded, praised, encouraged and told how much they deserve the good things, when your own life is full of struggle and things that seem so harsh and unfair? 

When we say "you deserve it" to someone in relation to something good they have received, we imply that those who don't have it don't deserve it, and that those who have bad things to deal with do deserve those. 

But in reality none of us are any better or more deserving than the rest, really. We all face our own challenges and do our best with them, don't we? 

Perhaps I am over thinking things (again), but I suspect I am not the only one who feels this way. What are your thoughts? I'd love to hear other peoples opinions on this, as it has been bothering me for ages!!   I don't claim to have any solutions or special wisdom on this- I am just struggling with it and looking for some feedback. Feel free to leave a comment!

Tuesday, December 25, 2012

A very Normal Christmas

It is thundering and raining here this morning. The kids are playing with their Christmas gifts that we opened last night. Hubby is sleeping off a night shift.

The weather fits my mood..... I am feeling very sombre this morning. Last night the main thing Hubby did at work as a nurse was to call a family and let them know their Father has passed away on Christmas Day. He said it was the worst thing he has ever had to do in 15 years of nursing.

I am so glad he was there to do it though, for the families sake. He told me they took extra care preparing the mans body for them to visit. He was choked up about it, and I couldn't help thinking that if I had to receive news like that I'd want it to be from someone like him, who after all this time still struggles with his emotions at a time like that.

I am thinking of all the people around the world who have suffered loss in the last couple of weeks and months. Of those who are facing their first Christmas without their son or daughter, mother or father, brother or sister......

I am thinking of all the people around the world who have no home, no food, no safe place to rest.

I am thinking of how lucky I am. My Normal Christmas might include shift work for Hubby, managing Sensory Overload Meltdowns, and this year a long drive to visit an elderly relative in hospital with a broken hip- but I have so much to be thankful for.

I am thankful for my Wonderful Hubby, my Amazing Children, my supportive extended Family, my home, a bit of money in the bank, the ability to be able to choose to buy some presents and have a special meal. I am thankful for my health and that of my family, for great support from both Medical Professionals and Friends in our journey. For laughter. For warmth. For safety.

I'd like to wish the same for you all, too. I hope your Normal Christmas is one of happiness and peace, however you are spending the day.

Happy Christmas!

Thursday, December 20, 2012

All the Victims

There are lots of people talking about the horrific event in Newtown last week. And they are saying a lot of things. Some of them are compassionate, some of them awful. All of them uninformed.

I've refrained from saying anything until now for a few reasons. Initially I was too sad to say anything. Then I was just too stunned by the media reporting that was going on- particularly the reporting around the speculation that the shooter was Autistic. Then I was just plain overwhelmed by the volume of articles flooding the 'net. Everyone struggling to understand and find a reason all at the same time, all in their own way. And then, I was just grieving and thinking.

Mostly I've been thinking about the Victims of the events at Newton.

There are the obvious ones.....
The children who lost their lives.
The teachers who lost their lives.
Their families. Their friends.
The children and teachers who survived.
Their families. Their friends.

There are the slightly less obvious ones......
The shooters mother, who lost her life at her sons hand. Some want to blame her, but she is a victim.
The extended family of the shooter who now live daily with the knowledge of the suffering others endure at the hand of their relative.

And then, the media makes more victims..... They do us all a disservice when they report as they have been. They add to the fear. They demonise whole sections of society. We see it every day when sweeping statements are made. Statements that encompass whole groups of people, stereotyping and stigmatising. We like to have someone to blame. And something to blame.

Somehow it is not enough to blame a person. We want to blame a particular type of person. We have to distance ourselves from the bad guy. He can't be anything like me, we think. Or anyone I know. If I am to feel safe there has to be something bad about them that made them do this.

So the media gives us what we want. They find something to report that will keep people watching, and ultimately earn them money. This time someone said the shooter may be on the Autistic Spectrum. The media ran with it.

We are all victims in this scenario. Our kids are victims because people begin to fear them. We are victims as their parents attempting to advocate for them. Our non-Autistic children are victims as they hear their peers make incorrect judgements about Autistic people. The general public are victims when this type of reporting happens because they believe what they hear, whether it is true or not, and the ongoing stream of misinformation fuels the fire of misunderstanding and fear.

I don't think people realise the impact this kind of reporting and the ensuing commentary from members of the public has on those of us who live with Autism (There have been facebook pages pop up in the last week vowing to rid the world of Aspergers by doing things like burning Autistic children!!). It's not just words to be read. It is attitudes, stigma and ignorance to be battled every day. Going out in public with a child who behaves in ways others find unusual is hard enough to do without the extra fear people now have of Autism due to this reporting. And it is all based on an unconfirmed speculation! It is exhausting, unfair and overwhelming. 

It is also frightening as a parent to now be in the position of wondering if some cocky and thoughtless teen is going to say something to my son at school that is based on all this idiotic talk in the media that Autism is linked to violence. My son who has been the victim of verbal and physical bullying all year at school. Imagine the hurt and confusion he would feel if he was aware of all the talk going on!

I am glad there are those who are writing to counter the horrible misinformation about Autism that is being published at the moment. Myself, I just can't tackle that one just yet. But someone needs to and I am glad there are those who are. Soon I hope my mind will unblock and I will be able to get back to thinking and writing about life again without the cloud of this awful event sitting in the front of my mind.

Back to my statement that everyone speaking up and offering their opinions on the shootings and why they happened is uninformed.... The simple fact is that we will never know the details of what happened and why. The only person who really knows took his own life. The media can speculate all they want, and so can we if that is what we choose to spend our energy on. But we will never know. We can argue and exert our opinions onto each other as much as we like. But that will not provide any answers either. All it will do is divide communities that could be supporting each other. When we allow communities to remain divided we perpetuate what the media started and remain victims.

For now my thoughts go out to those families most affected by this tragedy- those who have lost loved ones in the most awful of circumstances, who will spend the next period of their lives in deep grief, confusion and pain. I don't know how they will do it, but I hope they soon find peace and calm return to their lives.

Tuesday, December 11, 2012

I'm beginning to suspect that I am the Grinch

Maybe it's because I am very pregnant at the moment. Maybe it's because Christmas season with Autistic kids is a challenge. Maybe it's because the more I "know" about the world the harder it is to get my head around the mass consumerism our society indulges in this time of year.

Whatever the reason behind it, I'm beginning to suspect that I am the Grinch. I am just finding getting into Christmas this year exceedingly difficult. I don't want to buy presents.  I don't want to spend money on special paper to wrap them in that will just get thrown in the bin. I don't want to plan a special meal. I don't want to decorate the house with a heap of messy stuff that I'll just have to find the energy to put away again in a couple of weeks.

The excess of the traditions our society demands of us seems so wasteful and disrespectful of the millions of people in our world who don't have a place to live or enough food each day. While my kids get fed messages everywhere they go that they should want this and need that, there are kids who go to bed every night to the sounds of gunfire and bombs and they simply wish for a safe place to sleep.

The social demands placed on us to attend end of year and holiday events cause stress that I could do without at the moment. Taking 2 Autistic kids to numerous different events they find boring and/or overly stimulating is a kind of exhausting that is hard to describe.

The expectation that I should want to drag my 30+ weeks pregnant body all over the place, enduring uncomfortable car trips, less comfortable seating when I get there, having to find a bathroom every 1/2 hour, politely engaging in small talk conversation while suppressing my reflux burps is irritating to say the least.

To be honest, it is making me angry that when I have so many other more important things to worry about- like supporting my son through dealing with being bullied, helping my daughter adjust to her new diagnosis and medications, getting everyone to all the appointments they need to be at- the culture I live in expects me to drop everything and consume. And for what? So that my kids feel loved when I buy them lots of presents? So that my relatives know that I'm thinking of them? So that people don't think I'm weird? None of those reasons sit well with me.

So this year my family will be having a minimal Christmas. We are not travelling. We are not buying much in the way of gifts. We will not be eating a big fancy meal. There will be one or two gifts each, and a roast dinner. We don't need more. We don't even *need* those. We will be spending the day quietly at home. We will be thinking about the people in our local area who have nothing.  We will be spending some time reflecting on all the good things we already have and the things we are thankful for.

So, Consumer Christmas- you've been warned. You are not welcome at my house. Bah Humbug to you.

Friday, December 7, 2012

When bullying is normal

I wrote recently on the "Amazing Adventures" Blog about my sons experience of being bullied during his first year in high school (which is year 7 here in Australia). You can read the full post by clicking here.

Here is a short excerpt....

"This past year has been a stage with heaps of new skills for my 13 year old Autistic boy to learn, as he started in Year 7 at High School this year, in a mainstream class. We did as much preparation as we could before hand, and off he went. Sadly, it is true that kids on the Autistic Spectrum are much more likely to be bullied than their peers (46% compared to 11%). This has proved to be the biggest issue my son has faced this year. We had him prepared to navigate hallways, deal with 7 teachers, able to cope with a daily timetable that changed over a fortnightly rotation, ready to plan out and manage assessment tasks. We have started teaching him more complex, adult style social cues and responses. What we couldn't get him ready for was having his lunch box stolen, being shoved in the hallways, being called rude names, having money demanded of him by other students, having his school bag urinated on and having his mobile phone stolen. We supported him through all of these things, with the help of our Psychologist and with the co-operation of the school."

Since I wrote that post there have been 3 more incidents of bullying. Physical and verbal.

The awful thing about it all is that the boys who I believe are the main perpetrators, whose names are mentioned every time something happens, are clever enough so that when the school investigates they can't actually prove anything. The boys organise alibis and tell lies about what happened. Even the school staff think it is them, but they can't take appropriate disciplinary action if they can't show conclusively that it was them.

So bullying has become normal for my son.

Today I am feeling overwhelmed by it all. And so is he. He has asked not to go back to school. Ever. Part of me wants to say OK. Instead, after chatting about it, Hubby and I have decided that he will not go back to school for the rest of the year. That will give him an extra 1 1/2 weeks time off, making a total of 8 weeks break. We told him that next year is a fresh start, with a new class of kids who are  much less likely to cause problems (read about that in the post linked above, too).

We haven't told him yet that I have called the police, who have been very supportive and given me some good advice, which I will be following.

Enough is enough.

This normal is not OK. It needs to be changed.

It saddens me that just because my boy is Autistic he is statistically expected to deal with bullying, and that somehow there are people who think that is acceptable. It is not.

It saddens me that people want to question him about his "weirdness" and that they will stigmatise him for being "different" even though he is hurting no one, when there are people out there purposely harming him and not being held accountable.

I read a great article by Ariane Zurcher yesterday (click here to read). Here is my favourite part,

"How is it that we can say we "care" about autism and those who are autistic, yet not fund programs that will make their lives better? How is it we can use war terminology and ignore that these words make those who are on the spectrum feel badly about their very existence? Is this how we want our children to feel? Do we really want our own children to grow up believing they are fundamentally wrong, at fault and "broken"?
Let's just say, for the sake of argument, that our autistic children, whether they speak or not, whether they are in a special education classroom or are included with a regular classroom, most of them, if not all, can and do understand what is being said about them, but they cannot tell us or do not have the ability to communicate in a way that we, who are non-autistic, can understand or recognize. Can we at least imagine what that would be like if this were done to us? Can we try, just for a moment to have the empathy needed to imagine? Are we compassionate enough to pause, even if for a moment, and consider the implications of what we are saying and doing? Even if we cannot or do not want to think about all the autistic adults whom we do not know, can we think about our own child? Our children will be adults one day, do we really want them to feel as so many autistic adults do? Do we really want our children growing up feeling they are a "burden" to not just us, but to society? Is this the message we want to pass along? Because at this moment, that is exactly what we are doing."
It speaks strongly to me because I can see that the school system is not set up to give my son the support he really needs, even though the powers that be make sure everyone knows how much they care because they spend [some pitifully inadequate amount of] money on providing [hopelessly inadequate levels of]  support in [inappropriately identified] areas they deem necessary. And I can see the effect this has on my son. He doesn't want to bother people again telling them of what has happened. The paperwork he is required to fill in to report incidents is too much for him to manage, but must be completed so there is a record to justify time spent. He feels like a burden when I have him home extra days or have to pick him up early.  These boys are disempowering him and telling him he is not important, and the school inadvertently reinforces this message every time they "investigate" and then fail to make any changes that actually help him. 
I'll say it again- THIS NORMAL IS NOT OK. 
But I don't know how to change it. And I feel overwhelmed and sad. 

Wednesday, December 5, 2012

Summary of a normal month, and what keeps me awake at night

I recently applied to Centrelink for Carer Payment. The payment is supposed to be for a person caring for someone whose support needs are significant enough to prevent the carer from being able to work elsewhere to earn money.

I have three children with high support needs at the moment, and while Hubby is working full time I am not able to work because I spend so much time organising and attending appointments for and with them, liasing with their school teachers, and being available to support them whenever they are not at home.

I filled in 3 lots of paperwork, made an appointment with the Doctor so she could fill in 3 treating doctors reports, and put all the other ridiculous amounts of supporting evidence together for Centrelink, then sent the application in. I figured that even if the care needs of one of the kids didn't make me eligible for the payment, surely having the 3 of them in the one application would. The application process even had a procedure for applying for a single payment based on care needs of more than one person. So, I crossed my fingers and waited. I got a phone call a couple of weeks later, to tell me that 2 of my children's care needs were not high enough so they would not be considered in the application. Um, what? The whole point was that it is the 3 *combined*!!

But here's the thing that angered me the most. The guy on the phone, who doesn't know me, has never met me or my kids and who used the numerical codes next to the boxes I ticked (rather than the comments I wrote all over the form) to determine that my kids don't take up enough of my time to prevent me form being able to earn an income, said to me.... "we can't count time spent on attending appointments and such because that is something all parents do for their children".

So, I started keeping a record of the appointments I have attended in the last month that have been related to providing care for the 3 kids who were included in the application:

5 psychology appointments, 6 Doctors appointments, 2 Psychiatrist appointments, 6 meetings with School staff, 8 phone calls to School staff (each at least 15 minutes in duration), a Dentist appointment (that is significant because it had to be specially booked an hour away from home in order to access adequate anaesthetic for  my daughter with Sensory Processing Disorder), 1 meeting with Preschool Director, 2 appointments with Support Worker.

Here is a summary of the appointments I have attended for my other 2 children in the last month:

Is it just me, or can anyone else see a difference here?

Mr Centrelink Clerk, I think it's possible you have NO IDEA WHAT YOU ARE TALKING ABOUT.

And, although it is not relevant to the Centrelink payment application, I also attended a further 10 appointments with my Hubby to support him in managing his Health needs. That is more than usual for him due to a back injury sustained at work 6 weeks ago, but would have been much easier to deal with if I hadn't been doing all the other things.

So, on average in the past month I have attended 2 health and support needs related appointments each week day (Monday - Friday).  I have also had to change personal plans at the drop of a hat numerous times due to needing to be home unexpectedly to be with kids who have not been able to attend school due to Autism or Bipolar related stresses and anxiety.

While it is a normal part of my life, and while I acknowledge I am not privy to the details of other peoples every move and regular appointments, something tells me that this normal I experience is quite different than other peoples normal schedules.

Most of the time I do not begrudge the time I spend on supporting my children. Sometimes I do feel tired and a bit overwhelmed. But I love them, and it is so worth the time and effort to see them progress and grow and do well.

I do, however, feel frustrated and annoyed when "the system" that is supposed to be there to help people whose "normal" is a bit more challenging turns around and says "Nope- you are not doing it tough enough to satisfy our numerical equation".

I'm not looking for sympathy here. I'm not looking for a pat on the back.

I am simply saying that I think "the system" and society fails to recognise the real needs a lot of families living with things like Autism and Bipolar actually have. These so called invisible disabilities are not acknowledged in ways that are helpful.

My Husband and kids live every day with the very real effects of the stigma of their diagnoses.... bullying, snide comments, assumptions, whispered conversations behind their backs..... and more.

I have blogged before about how it is important for people with influence to be responsible with their words and actions (click to read my Letter to 50 Cent or my response to the acquittal of a couple who had caged their Autistic children or my Open Letter to the NSW Government regarding cuts to Disability Support Funding in schools), and I will refrain from saying anything about TIME magazines headline on the changes to the DSM "Redefining Crazy" except that I think whoever chose that awful discriminatory title ought to be fired.

I really should stop spending my energy being cranky about things like Mr Centrelink Clerk. There is not much I can actually do to change the way the cogs grind in those Government Departments. But it is hard not to feel angry when you live daily pushing back against the societal attitudes that have created the cogs and have set them grinding.

And although it is relatively easy to talk and write about the tangible things that happen and label them as wrong, those are not the things that keep me awake at night.

How do I teach my kids to be decent human beings when every day others take advantage of the fact they are different?
How do I help them to grow up with a strong sense of self and worth when every day others cut them down and fail to acknowledge their value just because they don't fit the mould?
How do I adequately support my kids to learn sufficient coping skills to deal with attitudes that are so deeply entrenched in our society that most people don't even realise they engage in behaviours that make life so difficult for the minority?
How do I help them learn to navigate a world where the acknowledgement of their unique needs and potential is manhandled through formulas and policy documents by those with the power to help them rather than being thoughtfully and carefully considered?
What is the "right" thing to do when my son asks me if he can stay home for the rest of the year instead of having to go back to school and be around people who disrespect him and stress him out?

This is our normal.

Sunday, December 2, 2012


Normal, according to my computers dictionary is this-

I guess the words that stand out to me are conforming, usual, typical, and expected. If you want to be picky, my family does not conform to the strict definition of normal because we are not "free from physical or mental disorders". But, I have a different viewpoint. Bear with me while I explain.

I think there are many different kinds of normal. Just like it is normal in France to speak French andnormal in Australia to speak English as those languages are usual, typical and expected in thosecountries. Just like in one house hold it is normal to eat cornflakes for breakfast and in another it isnormal to eat bacon and eggs for breakfast. Just like in my house the normal- usual, typical, expectedbehaviours include mania, depression, sensory overload meltdowns and dependence on routine andpredictability and in your house those things would be out of place. These are normal in our house because we have people diagnosed with Autism Spectrum Disorder, Sensory Processing Disorder and Bipolar Disorder in our family. 
Hence the name of this blog- "different kinds of normal". One of the things that is extremely important to me as a mother to children with disabilities is to do everything in my power to reduce the stigma they face as a result of being different than most people, and to advocate for understanding and acceptance of all people. 
I don't have lots of time. I certainly don't have lots of money. A lot of the time I don't even have much energy left over after doing the things I do in my parenting role. But I do have time and energy to write. It is good therapy for me, as well as being a way to communicate with the world what life is like in our family. 
So, I write. And I hope that somehow my writing reaches people and tells them about our normal and helps them understand that everyone is valuable and has something to offer. I hope that my writing helps to reduce stigma and increase understanding. 
I have been blogging for almost a year at "Amazing Adventures- my journey parenting Autistic children". I have just started blogging at "Being OK with Bipolar". Both of those blogs are linked to this one so you can find everything easily. To read more specifically about Autism or Bipolar just click on the links at the top of the page. Information about Sensory Processing Disorder will mostly be found in the Autism blog because in our family it is my Autistic daughter who has SPD and so the two are tied in together for us. I also write regularly for the Aussie Mum Network, and you can find my posts for them here.
This blog is a linking point for everything that is on my mind, more than anything. It serves as a central place where I can write more generally, while acknowledging the individual aspects that contribute to forming my opinions and influencing my actions. It (hopefully) will tie things together while allowing you as readers to easily pick and choose the things you are most interested in knowing about and finding them quickly. I will post general thoughts on just about any topic, and also post to let you know when new posts are added on the other blogs. That's the plan- let's see how it goes!