Tag Archives: education

A very autistic Christmas.

18 Dec

It’s been 553 days since my son Giovanni, 8 was diagnosed with Autism Spectrum Disorder (ASD). Have I mentioned how much I DETEST the word “disorder” being associated with my son? It bothers me more than the word “autism” does because it suggests that there is something wrong with him.

After 553 soul-searching days of ups, downs, tears, laughter and endless support from special needs parents I’ve never even met, and some I have met who are now some of my best friends, I no longer feel autism is a disorder.

Christmas is one of the hardest times of the year for parents of special needs children for a variety of reasons. For me it’s because the season involves so many crowds and get-togethers and elaborate meals and many other things Giovanni has trouble coping with.

autism-christmas-lunch-meme-pinterest

Yes it’s hard to be a person with autism – for those who have been diagnosed with it and those caring for people who have been diagnosed with it – but only because of the way in which modern life is structured.

Our lives are governed by endless constraints, schedules, time-limits, rules of acceptable behaviour, measures of success not to mention constant judgments of us as parents and as people.

God-forbid we don’t act “normal”.

God-forbid our children don’t act “normal”.

God-forbid we don’t get a job, pay bills, rush around and become “productive members of society”, a society that’s rules and regulations we had no say in establishing.

If we could just allow people to chose how they live their lives and give them the physical and mental space in which to do this, we wouldn’t spend so much of our time raising our children to be slightly different versions of each other.

They can be who they were meant to be.

Giovanni doesn’t like parties, so why should he be forced to go to them?

Giovanni doesn’t understand verbal instructions, so why is he forced to participate in an education system that relies on teaching via verbal instructions?

Giovanni doesn’t like to eat too many different foods, so why should he be pressured to try them?

Giovanni doesn’t like it when people he hardly knows touch him or kiss him or hug him, so why should he have to put up with it?

And instead of us, the so-called “normal” people or as they are referred to now, the “neuro-typical” people focusing treatment and education and medications designed to produce a child that can do all of the above, why can’t we just figure out a way Giovanni can carve out his own unique space in civilised society, without judgment.

True, he might stare at you on bus or fail to make any eye-contact at all while buying a drink from you, but instead of you automatically assuming he is “weird” or “mental” or “wrong in the head”, maybe you’ll think, He may have autism, or, There may be a reason other than rudeness influencing his behaviour.

He may be on the autism spectrum…

He may have mental health issues…

He may have just received devastating news…

He may be just like anyone else, despite his diagnosis, just doing his best to get through each day. His difference doesn’t make him of any less value or dangerous.

I’m not sure exactly what I’m trying to say and fellow special needs parents reading this can probably relate to that. There are days I want him to be “normal”, where I want him to be able to walk to the front of his class and receive an award or pick up an apple and just bite the damn thing.

But he doesn’t do any of those things and probably never will.

Every day I make the choice to accept my son EXACTLY the way he is and my goal as his mum is to help him figure out a place in the world in which he is safe, happy and comfortable.

It will look very different from the safe, happy and comfortable place my two other children Philip, 12 and Caterina, 7 will make for themselves, but it won’t be of any less value.

And I’ll be no less proud of him for getting there.

To find out more about Autism Spectrum Disorder visit Autism Awareness Australia.

If you or someone you know suffers from mental health issues contact Lifeline on 13 11 14.

 

Why I write.

28 Dec

I started this blog as a uni assignment. I’d enrolled in a Masters of Creative Writing at Macquarie University and our lecturer advised us to write every day. I had a new baby and two older children to care for. I knew I wouldn’t write every day unless forced.

Starting a blog had been on my mind for a while. I’d had to leave my radio career behind due to my children’s extra needs – food allergies and Autism Spectrum Disorder – and was looking for some kind of outlet. Writing blog posts appealed to me because I could write about whatever I wanted, with no demands placed on me by an employer.

My brother became sick of me mentioning my intention to start a blog and never getting around to it so one day he set it up for me, emailed me the details and told me to get started. I couldn’t have loved him more.

Since then I started writing almost daily. My blog soothed me during difficult days and gave me back my voice. It helped me with my uni degree which ended up going pretty darn well and led me to my current career as a writer for Mamamia Women’s Network (MWN), a job I plan to have until the day I die.

As a result of my very brilliant career at MWN, I have been neglecting this blog. The posts I used to write here have now found a new home so I didn’t know what to write about.

Then I realised that this blog doesn’t have to be anything at all. It can evolve and change and be whatever I want it to be. For now, I want it to be a place I can go to express those thoughts and feelings that don’t necessarily appeal to the masses.

Me and the kids

Modern life is incredibly busy and incredibly isolating.

Some say blogs are self-serving and narcissistic. For me, blog writing is therapy.

Modern life is busy but it is also incredibly isolating. Technology has removed the need for personal interaction and instead of fighting it I have ended up embracing it, and isolating myself even further.

Having the ability to write and express myself has been a life-saver. However over the next 12 months I plan to try and get “out there” even more while maintaining all of my amazing work opportunities.

Life is for the living.

My children have picked up on my home body habits so I’ll be pushing them out the door more too. Or maybe they are natural home bodies. It’s hard to tell at their current ages of 11, seven and six. I suppose I’ll discover their true nature soon enough. Parenting isn’t anything if not an eye-opening adventure.

That’s all for today. I wanted to reach out, say hi and tell you all that life is for the taking, it’s never too late to pursue your dreams, do better, be better and so on, and so forth. I say these things to myself each and every day and I try and live my own advice as much as possible.

The New Year always starts for me straight after Christmas so I suppose this post is a New Year’s resolution of sorts. It certainly sounds like it, doesn’t it.

I wish you love and light and health and happiness during the year ahead.

8 things I learned while under quarantine with my kids.

9 May

Whooping cough put my family and I under house arrest for five, incredible days.

Me and the kids

For the past five days my children and I have been under self-imposed quarantine at home, due to whooping cough. My eldest son Philip tested positive to the disease. He contracted it from a friend at school who probably contracted it from another friend, and they from someone else. The alarmingly low rate of vaccination in what is an affluent Sydney suburb means illnesses like whooping cough are more common than ever.

Our doctor assured us that we would be okay. We are fully vaccinated, it was a mild case, however because there had been “confirmed exposure” the proper course of action was for all of use to take antibiotic for five days and avoid mixing with others. I took the responsibility serious, and I’ve had the time of my life.

Here’s 18 things I loved about being under quarantine with my kids.

1. We were freed from the unforgiving school schedule.

Being a school parent is incredibly hard. Unlike the relative freedom of preschool, we have to arrive at a set time and it ends at a set time, making it incredibly hard for both parents to focus on their careers. Not to mention all the stuff that is involved. School uniforms, lunch boxes, drink bottles, sports shoes, homework, reading lists, stalls, open days which parents are expected to attend. It is relentless. I haven’t missed any of it.

2. Our mornings are like a dream sequence.

Most mornings I wake up to a series of alarms designed to get me out of bed at 6am at the latest so we make it to school in time or to our Saturday morning soccer games. The kids wake up to my calls to “get up or we’ll be late”. Not having to do that has been bliss. I’ve learned that my natural wake up time is between 8 and 8.30. The kids naturally wake up around an hour earlier. We’ve been getting up, eating a leisurely breakfast in our pyjamas and eventually getting dressed. It’s been heaven.

3. No guilt.

Normally when I don’t leave the house for a day or two I feel incredibly guilty. I should be doing things, helping others, offering to baby sit nieces, nephews and friends. I should be doing more, doing better. However being under quarantine means the onus isn’t on me. It’s not my laziness or desire for a simpler life that is to blame for our staying at home. It’s because of whooping cough. Guilt-free relaxation. I’ve loved every second of it.

4. Career sacrifices.

I love my work as much as the next person but I’m always astounded by how conflicted I feel when torn between work and my children. There’s always a sacrifice and I always feel really hard done by. Where is the choice? If we choose to work in a traditional job, great. If we don’t want to work long hours, why can’t we not? I think it’s a combination of financial stress, obligation and also our own ambition. I have what many feel is an ideal working arrangement as I am able to work mostly from home. I miss the office though. See? Torn. But not this week. This week I haven’t had a choice between work and uni and my children. They are sick. They win.

Dressups

5. Time with my children.

Having three school-aged children is intense. They are always talking at the same time, needing things at the same time. In the morning time is limited so we all try and talk and cuddle and bond in a mad rush before school drop off. After school we are eager to catch up, all at once. It doesn’t work. There are hurt feeling from them and feelings of inadequacy from me. For the past five days my children and I have talked and talked and talked. We’ve snuggled and watched TV. We’ve wandered around our backyard. We’ve pondered life’s bigger questions. We’ve discussed life and love and food preferences. I’ve learned more about them over the past five days than I have in the past year.

6. Everything is set up for mums to fail.

Society is set up in a way that makes it extremely difficult for mums to have the lives they want. We are constantly having to choose between work and kids and relaxing and housework. And it’s 2015 for crying out loud. I work full time hours due to my work and uni, however the responsibility of the laundry and the housework still falls on me. It’s not my husband’s fault. Yes he could help more, but he works incredibly long hours driving a petrol tanker. He alternates between day and night shift. It is incredibly unforgiving. He’d love to be home more to help me. He just doesn’t have anything left over for us. So I’m left to deal with it. I do the juggle. I get through it, but there is a cost. Always a cost.

7. I am a homebody.

More than ever I realise I am a homebody and I hope my children enjoy our relaxing time together at home. When I was little we were always home and hardly went out. I didn’t always enjoy it because our childhood was a little fraught, so I am taking the parts of my childhood I enjoyed and improving on the rest. We have plenty to keep us happy here. We haven’t touched the kid’s homework or sight words or trombone. We have done whatever we’ve wanted.

8. I want things to change.

Our five days are almost up and I’m frantically trying to figure out my new-found knowledge into our real lives. Is it possible to be this happy and relaxed and rested and still live the lives were were living before whooping cough struck? Can I reorganise our days so we can have this time together, free from stress, and still do the things we enjoy? I’m not so sure, but I won’t stop trying.

Do you sometimes wish your life and you children’s lives were different?

Uni blues…sing it sister!

21 Apr

I’m pretty sure my uni is trying to kill me…

Mummy and Caterina grad

Let me try not to overstate this. My uni is trying to kill me. It lured me into ANOTHER Masters course, tricked me into a first year exemption (that contained all the basics I would need for this year) and then charmed me with information sessions containing delicious finger foods and cohorts and academic staff that immediately loved and aspired to be like.

By the time I realised I might be a tad in over my head, it was too late to back out. Call it ego, call it pride, call it the scholarship I’d been awarded, call it stubbornness, call it self-destruction, call it an inability to not be busy (my husband insisted I add that one in), call it an endless obsession with eventually becoming a Doctor of something and then teaching writing courses while writing bestsellers myself…

Call it what you will.

The bottom line is that I am drowning and failing and this is not something I am used to. I normally do really well at things. I tend not to put my hand up for anything I’m not good at. What is happening? Who am I?

Now I am faced with an incredibly difficult decision. I could either:

1. Withdraw from the course and start over mid-year in the first year of the course;

2. Switch to part-time, lose the scholarship but be able to take my time and do my work properly and to the standard I want it to be done;

3. Quit, and never look back;

4. Buck up and just get stuck into it. I have already done so much work. Why stop now, and have it all be for nothing?

Jo grad

My grand master plan this year (pun intended!) was to drop my children off at school each day after feeding them a wholesome breakfast I had lovingly prepared in a relaxed way because I had soooo much time up my sleeve due to my new habit of waking up early, go home, do all my uni work and regular work, be done by the time they get home, spend a blissful afternoon taking them to all their activities, feeding them a wholesome dinner I had lovingly prepared in a relaxed way because I had sooo much time up my sleeve thanks to the magical fairies that do my housework, send them to bed and then watch reality TV while drinking tea.

SO NOT HAPPENING.

Everything has become a big scrambled mess and the main reason is because I don’t really know where do begin with all my uni work, how to do it, how to track it and I am so scared of mucking up I’m just avoiding it and not spending enough time on it.

I know what I’m going to do. I’m going to buck up. Anything else and I just couldn’t live with myself. I want to redeem myself to my supervisor and superiors and after the year is complete they will marvel at how quickly I caught up and how much I improved. Or…I’ll will scrape through and try and make the best out of it. Maybe they’ll let me enter the PhD program out of pity. Maybe they’ll let me clean the room in which the PhD students study.

It remains to be seen.

I never expected a Master of Research to be easy, but I did expect that I would know what to do and be happy to do it. I didn’t expect it to be such a mental feat. That’s despite hearing endless accounts of how research and PhD programs are really really hard and yet, so so rewarding.

To everyone who congratulated me on getting into the program at my dream uni, to everyone I encouraged to do the same, I stand by my decision to continue my education and I still encourage anyone who is thinking about it to do the same.

It’s sink or swim time. I plan to swim, even if it is a awkward doggy paddle as opposed to my cohorts who seem to be executing an effortless breaststroke.

Wish me luck. x

Have you ever bitten of way more than you can chewed, and made it out alive?

It’s never too late to change EVERYTHING.

13 Mar

You are in control of your life. You just forgot that you were.

My first university experience was fresh out of high school. I had no idea who I was or what I wanted to be. I had a rough idea in my own head of the kind of path I wanted to take. Also my parents (my dad) had bashed me over the head with his expectation. “You should be a financial journalist”, he would say to me. However something I’ve always been good at is knowing my limitations. I loved high school Commerce and Economics but was in know way smart enough ‘that way’ to write about it everyday.

So my career went something line this:

Grocery store

Toy store

Bar tender/waitress

Radio announcer

Author

Traffic reporter

Journalist

Not too shabby, right?

It wasn’t an easy ride. I could write a book about each and every one. But it’s mostly the transition from traffic reporter to journalist that I want to talk about, that I am asked about and that I am the most proud of.

I was sitting at home a few years ago with a son in school, a toddler and a baby, feeling like my life was over. I felt like my best and most productive career years were way behind me and I didn’t have what it took to be a full time working mum. I have always understood and accepted my limitations and handling stress is not one of my strengths.

So I started dabbling in writing from home. Then I went to Google and started looking at writing courses.

I had always dreamed of going back to university and actually studying my first choice field and my first choice university. For me that was writing at Macquarie University.

Filling out the application form/s was an exercise itself. It felt like a cruel and grueling test which I thankfully endured and I got in. Then I actually managed to do okay at it and graduate.

Now I am back there again studying something new. I have more plans after that.

Here comes the lesson: It’s never to late to completely change your life.

Ever since I posted my graduation photo on Facebook last November I have been inundated with friends and acquaintances asking for advice on pursuing their dreams. I know countless reality TV contestants have said, “Follow your dreams no matter what” but it can be scary, and impractical.

I had to consider my children, my husband’s schedule and sadly, money. I kept fiddling around and snooping around until I found a way to do it that worked for me. There is always a way, if you want it badly enough.

Uni grad

Is there something you’ve always wanted to do but have never gotten around to? The great thing about life is that we are in control of it. We aren’t just at the mercy of it. It can be so easy to forget that. I never let my children forget it. I constantly tell them, “You can be anything you want to be” but it wasn’t until I started saying that to myself that I really comprehended it.

Parents, partners, bosses, friends and colleagues can’t control our lives. We can let them control our lives if it suits us. We can listen to opinions and advice, accept jobs and factor in peoples feelings. At the end of the day, however, we have to please ourselves.

We are all running our own race, no matter what our circumstances are. So run it well, or change tracks if you’re not happy.

It is never too late and I am an example that it can be done.

Do you think it’s realistic to change careers later in life? How much should you let family pressure influence your dreams?

This is why I don’t want to send my son to school camp.

5 Feb

IMAGE PHILIP FOOD ALLEGIES

My son has school camp next week and I am terrified. This is the first time I am letting him attend a school camp. He’s only gone on one excursion with the school. I’ve been too scared to send him before because of his severe food allergies.

How am I meant to raise a strong, happy, confident child when just one bite of the wrong food can kill him? How am I meant to protect him from a healthy distance so he can develop his own survival skills?

I feel as though every choice I make to try and protect him from his food allergies directly opposes the way I know I should be parenting, but I also feel I have very little choice.

Philip is 10 and yes, he is aware of his allergies and he even has a rough idea of what he can and cannot eat. Being allergic to egg and nuts is complicated. Everyone has heard of nut allergies but egg allergies are more complicated. It’s in almost everything, particularly foods kids enjoy eating, and although he is starting to slowly grow out of it, it’s still deadly to him in large doses.

So I continue to try and protect and educate him in a way that allows him to have some independence from me and remain alive so he can enjoy his new-found independence.

At first I said he couldn’t attend camp and he was distraught. He’d already missed band camp and the excursion during which they cooked and ate fried rice, an allergy mum’s total nightmare. He was sick of missing out. My husband and I made the difficult decision to let him go and since then, I haven’t slept a full night.

I met with the school and they assured me the venue was experienced in child allergies. I contacted the venue and they assured me Philip’s meals would be prepared separately by a qualified chef.

Philip and mum

No, I’m still not comfortable. What keeps popping into my head is the numerous incidents of children who have died at school camps after parents have been assured everything would be okay. The bottom line is that people make mistakes. I’ve made mistakes with Philip and accidentally fed him egg and nuts, but luckily I recognise the symptoms of his allergies which are different every time. How will they know he needs to be treated way before he becomes visibly ill?

So I’ve decided to pack all of his food myself.

The only thing is that he may feel left out of all the food fun at camp, but we have spoken about it and he is happy to do this as long as he still gets to go. Maybe next time we’ll do it differently, but this time, it’s the only way I can let him go.

We sat down and wrote down a two-day menu plan of foods he will be happy to eat and my job this weekend is to prepare it all, write out a menu, email the menu to the school and the venue, and then have a face-to-face conversation with every member of staff attending the camp, making sure they are all aware of his food allergies and my instruction that he is only to eat the foods I have packed.

Philip know he must only eat the foods I have packed and if he does well, then he can go to band camp later in the year.

It’s okay to let kids know you are scared in situations like this, isn’t it? I think so, as long as we discuss our fears and a solution that addresses them. That’s empowerment. That’s educating him to manage his food allergies himself for the rest of his life.

I felt the need to vent and rang my best friend. We had one of those conversations where we lamented the existence of food allergies and expressed frustration at the fact they exist, they are getting worse and that doctors don’t seem to know how they occur or how to treat them.

It’s a work-in-progress, a very slow one and one I hope we manage to solve in my son’s lifetime.

How have children’s food allergies affected you? Do you have to cater to children with food allergies at your children’s food allergies?

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