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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.

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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 called for swimming pools to be banned

20 Jan

Swimming public poolSince I started blogging full time for iVillage Australia I’ve spent too much time writing stories about parents who have lost children to drowning. This summer has been the worst. To me, drowning is one of the most preventable causes of death in children under 5 in Australia, but as a nation we are so attached to the idea of a backyard pool.

So I wrote a story called, Backyard swimming pools should be banned and was hung, drawn and quartered by social media.

I stand by every word I wrote.

The reaction has been one of complete outrage. I may as well have said “I hate Australia” or “All parents with backyard pools are terrible parents”. I’m saying neither. All I’m saying is that policy makers need to take a step back and stop focusing on pool fences and awareness campaigns. Instead they need to address a very real danger to our children, a danger that exists in their own backyard.

“More children die due to cars. Should we ban cars too?”

This was one of the most popular comments made about my article and to this I say, just because similar bans are even more impractical, doesn’t mean we reject banning backyard pools. We don’t need backyard pools to get to work, to take our children to school, to visit friends, to buy food, but we do need cars. It’s all about minimising risk. Does anyone really need a pool in their backyard?

“Swimming lessons should be compulsory”

A one-year-old isn’t going to be able to save themselves if they fall into a pool, even if they’ve been in the pool since birth. In fact the most vulnerable age group to backyard drowning is those aged between 1 and 3. They are young, they can’t swim properly, they tire easily and they can inhale a large amount of water very quickly.

“Why are you suggesting something that will never happen”

Never say never. I know this is an extreme suggestion but to me, if fireworks have been banned for causing injuries and deaths in children, then why not swimming pools?

“Supervision is key. If parents did a better job of looking after their children drowning wouldn’t happen”

I have covered countless stories in which good parents, vigilant and loving parents have lost children to backyard drowning. Distractions occur, toddlers sneak out during nap time, outdoor furniture is pushed against pool gates to open them, so many things can go wrong. The stats are in. Clearly supervision and other safety measures are failing.

Before you say anything else, consider this. Isn’t it worth letting go of backyard swimming pools to save children’s lives?

If we don’t ban backyard pools, how do you propose we significantly reduce the rate of drowning deaths in Australia?

I appeared on Wake Up on Ten to discuss the article. It was pretty interesting. Check it out:

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Sometimes it’s okay to do not much at all

9 Jun

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It’s 10 am and I’ve just gotten out of bed. I’ve recently trained my kids to let me have a sleep in some Sundays (this is the second time in a year I’ve done it). By sleep in I mean I lie down and snooze while they run in and out asking for things. This morning from the comfort of my bed I handed my iPhone to my son, yelled out ‘yes’ when my other son yelled out asking if he could use my laptop and I even opened a jar of pitted black olives for my daughter – without spilling a drop – before slumping back and cuddling my pillow for a few more precious minutes.

I’m up now. On my way from my bedroom to the kitchen (COFFEE!) I changed all the kids into their day clothes, picked up endless pieces of paper and straightened up, threw toys in the toy box, fed the cat and put on a load of laundry.

It’s the long weekend and we have no plans. I felt like I should organise an outing but we’ve been so busy lately and for the next two months we have an important events pretty much every weekend, even two, and then we segue straight into the school holidays during which my sister and I juggle and juggle hard to get to work, fighting over my mum’s baby sitting services and trying not to go insane when at home with all six of our children and a few extras.

I love life when I’m busy but I also love doing not much at all. When my kids asked me what we were doing this weekend I said, ‘Hanging out’ and now they repeat this constantly. It’s super cute.

Of course fellow mums know that when I say we’re not doing much at all it just means we have no formal events to attend or planned outings. Staying home means catching up on work, housework, paperwork, cleaning, tidying, sorting out my clothes, unpacking the boxes left over from our move two months ago, ducking off to the shops when we run out of dish washing liquid and toilet paper. A bathroom incident during which brushing teeth led to a water fight (STOP IT!) left all the toilet paper soaked. There wasn’t even one roll spared. Why did I fork out for the expensive butt-cushioning toilet paper this week? Back to generic, then fight away children.

I’ve always been a bit of a homebody and I find weekends like this reset me  and prepare me for the flurry of engagements, of doing my hair and make up, figuring out what to wear and making sure the kids are presentable.

In preparation for our hectic schedule I’m also making spaghetti sauce to freeze for quick dinners, eating really healthily and exercising because there’s going to be some delicious food ahead like wedges at my daughter’s birthday at Italian cakes at another function. Self control I do not possess.

Enjoy your long weekend and I hope it’s as busy as you want it to be or as relaxing as mine…

La Dolce Vita

Jo Abi

My son is upset that he’s short

5 Jun

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This is my son Philip. He’s 9 and perfect and funny and SHORT.

“Mum, I’m the shortest in my class, the shortest in my soccer team and the shortest out of all my friends,” he regularly tells me. When he says this it brings back painful memories of school (doesn’t everything!). I was called ‘shrimp’ more than I was called Jo during both primary and high school. Even now as a fully grown adult I’m only 5’3”. But so what? I’m not a model or a basketball player and to be honest, if I’m reaching for something high up I’m a chair away from being able to get it. So what if I’m short. So what?

Except kids hate being different from their friends. They just want to be the same. Same, same, same. It makes them feel comfortable and it makes them feel secure. What they don’t realise is that it’s their experiences of being different that make them into strong, determined, amazing, unique people. Being different isn’t necessarily a bad thing.

It’s just that Philip feels different enough already. He has food allergies and has to wear a yellow hat at school. All his friends are allergy-free and wear blue hats. He also has silver caps on his top, side teeth. His friends ask what they are. He feels embarrassed when they do.

I gave him the “it’s okay to be different” speech again tonight and he listened but I’m not sure I helped. I even used a sports analogy.

We were watching Origin I (GO BLUES!) and I said that it doesn’t matter if he’s short, especially in soccer. I reminded him that Peter Sterling is still one of the best players to have ever played for the Eels and he’s as tall as me! Philip is fast, he’s fit and he’s an excellent player. Being short hasn’t stopped him from doing anything he wants to do (except reach the chocolate in the high cupboard after I’ve put it there so he can’t have anymore of it).

I then told him that if he eats more fruit, veg and all his dinner he’ll grow big and strong.

I then tucked him into bed and told him he was perfect just the way he was and not to bother getting upset about things he couldn’t change. Whats the point? I tell this to myself quite often too!

La Dolce Vita,

Jo Abi

My son has middle-child-syndrome and it’s all my fault

20 May

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I waited four years to have my second child. I wanted to be able to enjoy him properly and it seemed the perfect time when I fell pregnant with him just after my first-born Philip celebrated his fourth birthday. We were both so excited. Philip was old enough to understand what was happening and each day changed his mind as to whether he wanted a brother or sister. He suggested names, Baxter (our dog’s name), Susie (because that’s what Spot called his sister in the book we read)…

Giovanni was born with much fanfare. We lavished him with affection.

When Giovanni was seven months old I fell pregnant again. It was an accident (gift from God). My well thought out plan to have my children spaced out by four years, thus preventing any feelings of neglect, was ruined.

I am one of four children. I am the second-youngest and my memories of my childhood are not great. My mum was too tired to pay much attention to me unless I hurt myself. I fell over a lot and the hugs, kisses and affection I received made all the pain and bleeding worth it. It’s this childhood that led me to space out my own children. Oh, and I was only planning to have two.

I determined that I wouldn’t let Giovanni be affected by this. He would still receive all the attention he deserved. I’d just have to figure out a way so he didn’t feel left or neglected when the new baby came along.

Giovanni was 16-months-old when Caterina was born. All my intentions quickly went out the window as I battle fatigue, mastitis and tried to recover from my third c-section.

Giovanni was lost. He wanted me to pick him up but I couldn’t. He tried to sit on my lap as I breastfed his sister but there was no room. He went from being to the centre of attention to being forgotten way too often. And I saw it. I knew it was happening but I couldn’t do anything much about it.

I taught him to sit next to me as I breastfed the baby and we’d hold hands but it wasn’t the same. Whenever Caterina slept I tried to have some one-on-one time with him but there was so much to do. All too often it became Philip’s job to play with Giovanni so I could wash the dishes and cook dinner. My husband tried to help but he worked such long hours that his assistance was minimal.

I knew exactly what was going to happen. Giovanni was well on the road to middle-child-syndrome.

Fast-forward to today and Giovanni is a gorgeous five-year-old boy who has trouble expressing himself with words and prefers to express himself physically (by hitting and throwing things). He is unnaturally attached to his teddy bear and sucks his thumb constantly.

He CRAVES attention and when he doesn’t get it something is broken. I have plenty of time for him now but it’s not undoing what has been done and it’s made worse by the fact there are no other kids in our family his age. The older kids leave him out of their activities (so he usually breaks their favourite toys and makes them cry) and the little kids are a touch too young to keep him entertained.

I’m at my wit’s end.

Enter : the sticker chart.

I used a sticker chart for Philip when he turned four to iron out some of the kinks and it worked a treat. At first he was earning stickers so fast I had trouble keeping up and had to set the reward at twenty stickers instead of ten or I’d run out of money.

I have set it up for all three children. Five stamps means they get to choose dinner, ten means then can choose a $10 toy at the shops and twenty stamps means they can choose an activity like the circus or bowling.

It’s working a treat.

Philip and Caterina are steadily earning their stickers by trying new foods and putting rubbish in the bin. Giovanni is the only one so far who has lost stickers due to bad behaviour (pulling the cat’s tail, playing with the flour on the kitchen floor). When he loses a sticker he is devastated and immediately eats a piece of fruit because he knows this will earn him a sticker. It’s working so far and it’s great to have a way of dealing with Giovanni’s behaviour that is clear and removes the need for me to yell or get upset. That saves all our time for hugs, kisses and conversation.

He had his interview for ‘big school’ this week. The principal could immediately see that he wasn’t a talker like his older brother. But if you mentioned the right topic (the book The Very Hungry Caterpillar did the trick) he could talk up a storm.

He knew his colours but mixed up his numbers once he got to fifteen.

I was asked if I have any concerns for him. I said he expresses himself physically and would benefit from clear rules.

I wasn’t able to prevent Giovanni’s middle-child-syndrome but I am doing my best to rectify it. We all make mistakes as parents but armed with the right tools we can certainly repair some of the damage.

How do you handle middle-child-syndrome? How do you discipline your children?

Why is it so hard for me to be an organised mother?

4 May

My nook

I’ve always wanted to be the kind of mother who had a school bag nook. I’d carefully and lovingly design the nook in the perfect position in our home. At the start of each day I’d pack my children’s bags and they’d retrieve them from their designated hook on their way out the door. When they arrived home they’d hang them back up without me having to remind them because I’m super organised and so are they. Our family runs like a well-oiled machine.

Instead our bags are piled on a chair that is always so full we can never actually sit on it. I dig through the artwork, notes and toys to find the bags to pack them and then yell at the kids as soon as we arrive home to put their bags on the chair. Sometimes they listen.

The pile of school bags on the chair often collapses and only in the middle of the night to create maximum terror and panic.

I came across an amazing website called The Organised Housewife and her most recent post was all about how she’d craft the perfect nook for her family. I want to be just like her!

My style of parenting is complete chaos, despite the best of intentions. We’ll have a good day here and there, a good week but something will happen and chaos reigns. Sickness, extreme fatigue, forgetting to buy ham, a washing machine that is on the blink…

This month is has been moving house.

I can’t quite describe the challenge of viewing houses with three reluctant children who you have warned in the car on the way to behave so the agent doesn’t put a giant red cross across our application with a note saying, “Nightmare children.” We viewed several houses but each had a non-negotiable issue like no air conditioning, a giant tree in the backyard that had killed all the grass and created a mud pit, too small, too far from school…

Then, I found our new house or should I say, our new house found us.

I viewed a house near where we are now and it turns out it’s owned by a friend who approved us immediately. And, it has a school back nook!

Six retro hooks hang in the kitchen near where we have put our fridge. It is the PERFECT place for school bags. This house has been waiting for me.

I’m a more organised housewife in this house by default because they hooks are pre-existing but just like this amazing house that is cleverly designed for maximum living pleasure, I too plan to create a schedule that works, take the vitamins necessary to complete said schedule and make the most of life with a nook.

The nook is a metaphor for the kind of mother I’ve always wanted to be. The nook symbolises a mother who doesn’t forget birthday parties, who uses proper name tags on items, who attends P & F meetings, who uses sticker charts to moderate her well-dressed and clean children.

The nook has raised the bar and I plan to meet it.

A new era of motherhood has arrived. My children aged 9, 5 and 3 can look forward to a functioning home with no yelling, no last minute drying of the school shirts on heaters the morning of, plenty of ham and red apples in the fridge and set chores which they will complete without complaint because the organisation is infectious.

Is it time to start losing sleep over North Korea?

2 Apr

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North Korea is making me nervous.

I know there is conflict all over the world and there’s the threat of heightened conflict all the time but in my mummy-brain it goes something like this – North Korea declares war on South Korea and Japan, the U.S. and its allies step in to defend South Korea and Japan, we are a U.S. ally so our troops who were just about home from Afghanistan are sent out again and then some, every country that has a grievance with the U.S. backs North Korea (the middle east, Russia, China) and the rest of us become targets. World War III begins and every book and movie I have every watched about war time – sitting back smugly because there’s no way leaders are stupid enough to fight like that again – starts to come true. What’s to become of my children?

I am terrified.

North Korea said on Saturday it was entering a “state of war” with South Korea after coming under international sanctions for its nuclear test. North Korea has been threatening to attack the South and U.S. military bases since the beginning of March because it’s this time every year that the North and South carry out routine military drills and have done since the end of the Korean War 60 years ago.

It’s thought that few North Koreans believe their country will risk starting a full-out war, particularly because they are so powerfully outnumbered by America’s powerful military and a successful missile strike on a U.S. target would be suicide. But somehow I don’t think leader Kim Jong Un applies much logic to his decisions.

The two Koreas have been in a technical state of war because their 1950-53 conflict ended under an armistice and not a peace treaty, although Pyongyang said earlier in March that as far as they are concerned the truce is no longer valid.

North Korea has issued two photos to media that appear to show plans for striking the U.S. mainland and rallies are being organised in support of this move. North Korean soldiers are putting on a show that they are gearing up for battle, shrouding their jeeps and vans with camouflage netting, painting signs saying “Death to the U.S. Imperialists” and urging people to fight with “arms, not words”.

Most believe it’s all for show. North Korea is trying to force Washington back to the negotiating table to pressure the new president in Seoul, Park Geun-hye to change policy on North Korea. In July it will be 60 years since the end of the Korean War and in that time South Korea has grown from a poor nation to the world’s 15th largest economy while North Korea is left struggling and has a per capital income on par with sub-Sahara Africa.

North Korea’s national airline, Air Koryo, is adding flights to its spring line up and is preparing to host scores of expected tourists to Pyongyang. I for one would be reconsidering North Korea as a holiday destination. I hear the South is lovely, but I might stay away from there too for now.

 

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