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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.

 

Family celebrations are all about the food, right?

1 Sep

Yum

The plan was in place…

I set my alarm for 6am (a hideous time to wake up on a Sunday). It hurt, but I was a woman on a mission.

I got my work done, dressed for the day, woke my still sleeping kids up and we stumbled to the car. We drove forty minutes to get to our destination this Father’s Day morning. We were headed to Mezzapica in Sydney’s Leichhardt. I had placed order for my dad’s favourite Italian pastry. It’s hard to get. Not many people know how to make them properly and the ones you can buy frozen and imported form Italy just aren’t the same.

We used to have a local cafe supplied them but they’d closed.

It had been months since my dad had eaten a good one.

I picked up the order, ignoring the complaints of my children (where are we, why are we here, can we go home…). The box was filled with still-warm sfogliatelli.

SfogliatelleIt was important to me to deliver these to my dad today. You see, he’s 77 and each year he gets scrawnier and scrawnier. It really freaks me out.

My dad has always been really fit and healthy but he is getting so fussy with his food. He goes off particular foods for months at a time and eats the same things each week. He hardly ever snacks, but if there’s a sfogliatelle in front of him he can’t help himself.

Today he ate three.

Hooray!

In each family there is a food that is a tradition, that reminds them of their childhood and for which their family is famous. As you can see from the food pic at the top of this post, we have lots and lots of favourites. I made the cinnamon cheesecake with fresh ricotta, mum made the torte and the almond biscuits and I picked up the cannoli’s when I bought the sfogliatelle.

Today for Father’s Day we ate and we ate and we ate and it was so much fun. We all have leftovers for dinner tonight and desserts for breakfast the next day and we spend the whole day in one room eating, drinking, talking and playing with the kids.

Sadly my husband had to work today. I know lots of families who have dads who have worked on Father’s Day. We just do what we’ve gotta do.

My children didn’t get to wake their dad up and give him his gifts but we still had a fabulous day. Tonight we’ll do our own celebration.

Thankfully my husband loves several foods and his only tradition when it comes to food is eating as much of everything as he possibly can. Well honey, happy Father’s Day and here’s my mum’s pasta and several desserts for your enjoyment.

Food and family…they go hand-in-hand. And I love it. I love it all.

How did you celebrate Father’s Day today?

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

20 May

Gioavanni2

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?

Is it time to start losing sleep over North Korea?

2 Apr

North Korea pic

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.

 

Sick and tired of waiting to see doctors

13 Feb

Kids Line Up

Since the birth of my first child I’ve felt like I live at hospitals and medical centres. After the birth of my second child it became worse and after my little girl arrived I may as well brought along sleeping bags.

Hardly any of those visits have been for me. I usually just shuffle my way through illnesses and only go to the doctor for me when I absolutely have to. Case-in-point this week when a virus struck me down like a thunder bolt.

I was at the gym working out when I noticed tiny red spots all over my arms. My first thought was that it was a sweat rash but later in the shower I realised it was all over my body. I googled it and was told I could have Leukimia. Or measles, or meningitis. With three kids in tow headed for the medical centre but instead of going to our usual centre where we have to endure a one hour wait I chose a different centre where you can make appointments.

I still had to wait 40 minutes.

The doctor actually came out after 30 minutes but Caterina had chosen that particular moment in time to use the toilet so he saw another patient before me.

Finally we all fell into his office and my kids who were tired and bored started destroying his office. We both told them to sit down and behave which they did for about 50 seconds, long enough for him to quickly examine me.

The good news – I wasn’t dying. The bad news – it’s a virus that just has to ‘run it’s course’ and there was nothing to be done but rest. Rest?!? I have three children. As if.

After a 40 minute wait I felt entitled to at least some new multi-vitamins, some cream or perhaps a hug?

This is why I NEVER go to the doctor for myself.

With the kids it’s different. I always take them ‘just in case’ because if an illness is ever going to become worse it’s always at 2am when everything is closed. They never take a turn for the worst during daylight hours. And after several 4-6 hour waits at our local hospital emergency room I’d prefer to take them to the doctor for every tiny little thing than have our precious rest interrupted. This doesn’t always work. Like the time Philip and I were dancing to the music at the end of Gnomeo and Juliet and he jumped into my arms, some how turned himself upside down and I dropped him on his head. I heard a crack and called an ambulance. I thought I’d broken his neck. He was screaming and crying.

We rushed to hospital with a neck brace on him and they delivered us to emergency. My little man fell asleep. As he slept doctors (who probably had DOCS on hold) asked me to describe how this had happened, asking if I’d ‘wrestled’ him into a headlock. I explained how it had happened and they woke him up and examined him.

My previously crying, distressed child said he felt fine. It was like nothing had happened.

Because I couldn’t slap him in front of people (just joking) we stayed for observation and then were sent home after 2 hours.

People ask why I carry around such a large handbag and it’s because when waiting for doctors, dentists and other professionals you need an array of items to keep your children from going nuts, thus preventing your own nervous break down. My over-sized handbag contains snacks, drinks, toys and several discarded Happy Meal items. It’s saved me several times.

Next time you are at the doctors office waiting waiting waiting might I suggest adopting a calm attitude, ignoring those giving you and your children dirty looks, teach the kids thumb wrestling and settle in. Because they never stick to their appointment times and it’s never a 10 minute wait. Use it as quality time. Talk, play, have fun. You may as well.

La Dolce Vita,

Jo Abi

 

What I do when I feel overwhelmed

19 Jan

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Sometimes I just feel overwhelmed.

This morning I woke up with the weight of the world on my shoulders. It’s like a fog has come over me and I just can’t do what needs to be done because it’s too hard, it’s too much, I’m too tired.

Usually I just drag myself through it. I know the fog will eventually lift and I’ll connect with the world around me again but this time I don’t want to struggle for days. This time, I want to snap the hell out of it.

I looked in the mirror, at my wrinkles and my scars, at the dark circles under my eyes and I said,

“Snap the fuck out of it Jo. You have a perfect life.”

Because I do.  I have a perfect life. But running a perfect life is quite a feat.

It takes schedules and shopping and two jobs and finding lost shoes and waxing my legs at night after the kids have gone to bed and missing lunches with friends and remembering birthdays and answering emails.

It takes developing an ability to connect with people quickly but meaningfully because there’s just no time for more. It takes laughs and smiles and slumping into a chair to drink a coffee you made an hour ago and forgot about.

Most weeks it all runs smoothly. The schedule is working, everyone is healthy and happy, the fridge is full, the bills are paid, we are reasonably well-rested and everything is sweet as.

It just takes the smallest thing to nudge us off track. My dad collapsing in the heat and going to hospital, my daughter having an allergic reaction, me melting down over a new work opportunity, a husband who is job hunting…

Here are the things I need to get done but haven’t had a chance to:

Get a proper hair cut

Organise my son’s birthday party

Redo our budget that is already showing some alarming holes

Make sure my other son has the things he needs for school

Clean out our cupboards

Organise a rubbish collection

Get my car cleaned

Have lunch with all the friends I haven’t had time to catch up with

Ring my stepson and make sure he received the Christmas gift I posted

Find Dad an electric cigarette so he can give up smoking and stop collapsing

Get a proper hair cut

Plant some tomatoes, zucchinis, anything in our garden

Order new padding and netting for our trampoline

Get a proper hair cut

Go to the dentist to get my tooth fixed, finally

Finish my book

Enrol in my uni subjects

Plead my case to be admitted into a restricted subject at uni

Get a proper hair cut

Are you still with me?

I know this isn’t unusual. I know we all struggle with the schedules and requirements and demands. It’s especially demanding during school holidays when the kids are board and I just one ten minutes to relax. Funnily enough I don’t even get time to myself when I’m using the toilet.

I have the weight of the world on my shoulders and I often joke to my brother that if I disappear for a couple of weeks I’ve just checked into a nearby hotel for a breather and to tell everyone I’ll be back, eventually.

“Snap the fuck out of it Jo. You have a perfect life.”

It’s not the perfect mantra, but it works for me!

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