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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.

 

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?

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