I want to be invisible (in the school yard)

A friend recently asked me - "What superpower would you most like to have? And why?". With less than twenty seconds thinking time I answered that I would like to be able to choose when I could be invisible. When she asked me about the "why" part, my response was swift.

"I want to choose when I can be invisible so that I can avoid all those difficult conversations with tricky people in the playground at the primary school". 

She laughed and told me it was a clever answer. Maybe she thought I was joking. But I have never been more serious. Is it just me who feels like the schoolyard is a potential minefield of exploding parental conversation grenades....or do you feel like this too?

Last week another parent shared with me her concerns that the school may not be going "to cut it" for her child in an academic sense. She shared that her child is coming home and saying things like "I'm bored" and "I learnt this last year". She also told me that she thought she would "be pulling him out for a school with higher standards". I stayed largely mute throughout the conversation. We love the school we have chosen and we are actively playing a role in helping to build the community and support the endeavours of the staff. But I felt a bit bewildered. How did she think I would respond? What did she want from the conversation? I guess she wanted me to validate her thinking....agree with her point of view....Whatever the intention of the conversation, it left me uncomfortable and yes, I wanted to be invisible.

A month ago a different parent and I were having a conversation about the Batsman and his skills particularly related to his autism diagnosis. At one point she said "but it's like that for NORMAL children too". I would have given my left arm to be invisible at that point but instead I put my big girl pants on and had a conversation about how we would never refer or imply that the Batsman is "abnormal". I talked about how we NEVER refer to autism as "the big bad thing" or "the abnormal thing" or "the thing that's wrong with him". It's just not who he is, who we are or how we want him to view himself as he grows. The conversation was successful but a little awkward and left me drained and tired. Where was that invisible superpower when I needed it?

How do you feel about the conversations in the school playground? What superpower do you wish you had?

this time last year

The hallway previously used for pacing up and down.

This time last year it felt hard to breathe.
Sending our big boy, the Batsman, off to primary school after 3 long years of autism early intervention work and incredible closeness felt like having a limb removed.

This time last year I watched the clock.
I paced.
I phoned friends for support.
I obsessed and worried.
I was a pain in the arse to live with and be around.
I slept poorly.
I drove past the school to see if I could glimpse him in the playground.
I cried.
I ate for comfort.
It wasn't my finest hour but it was part of what it took for me to let go of him a little, hand him over to others at his school and trust that they and he could make his prep year happen together. And they did just that. I was part of it, sure, but last year was the first time I'd had to surrender full control of supporting him and helping him learn and being there when it was hard.

What a difference a year makes.
There have been no tears from anyone and very little worrying.
I have largely sat back and marveled at him stepping back to school and grade one like the most natural thing in the world. He is truly amazing.

Today I sat in a cafe for almost two hours with a friend who is close to my heart. We didn't really have a care in the world. We weren't watching the clock. We lingered over our lunch and our coffee. It was nothing at all like "this time last year". It was great.

And it feels pretty amazing to have reached this place, at least for now.

it's his turn

The Bowler was 6 months old when his big brother’s autism diagnosis came. 

He has lived his baby and toddlerhood with a house full of therapists, the juggling of appointments and schedules and parents who were often stressed and distracted. He has never known life without any of it.

Even with all the distractions, he has grown into an engaged, sometimes rowdy and loving little whirlwind. He loves life and he loves his family.

This year, his beloved big brother is off to school on his next adventure. The Bowler has an exciting year ahead too – he is beginning kinder and he is attending a pre-school sports program which he adores.

He will have a whole lot more time to hang out with his mum, to drink milkshakes and eat gingerbread in cafes, to run around without time limits in playgrounds and parks, to wander around the zoo and the museum.

After almost three years of being just a little in the shadow of his big brother and autism, it’s his turn.

It’s his turn.

words to live by after the everywhere and nowhere

I am everywhere and I am nowhere.

The end of the year came and went. So did Christmas and holidays, days melting together like some kind of stressed out lava. My head too cloudy to think of a coherently titled blog post.
Exhausted and anxious.
Everywhere and nowhere.

There was some rest in January. There was play and some cleaning out of all the extra stuff, both physical and metaphorical that has filled my world since the Batsman's autism diagnosis almost three years ago. Our home based therapy program is over and the Batsman is going to primary school. Eager, excited and ready. Me, not so much.
Everywhere and nowhere.

I'm marking time until school begins proper on Friday. Everything I have done in the last three years has been leading to here. I feel kind of numb. Empty. There is no one word or emotion that can describe how I am feeling.
Everywhere and nowhere.

I must carve a new path now. I must learn how to live without the intensity of daily home therapists, appointments and the utter crazy, chaotic and exhausting schedule of an ABA program at home. Never would I have thought I would miss it but somehow I do. I miss the structure, the sense of purpose, the adrenalin. I'm not sure who I am any more. I am about to go looking.
Everywhere and nowhere.

Lots of great posts were written in the near shadow of the new year. So many people had the clarity to pinpoint a word or a collection to be their talisman for 2013. I watched these posts with great interest and a little envy but for me, the words wouldn't come.
Everywhere and nowhere.

So I am here now, on the cusp of the year's second month and I have six words. Six words that I am going to work to live into this year.

Play and fun.

Balance and peace.

Fit and strong.

I will let you know how it goes.

Image via we heart it

a christmas miracle

Prologue: This post is published on both of my blogs – on The I Love You Song and here on Segovia. I would not normally do that but this post is a special one to me, part of our family “archive” and I really wanted to share it as widely as I can. As I write this post on Saturday December 15, I am all too aware that on the other side of the world, in Newtown, Connecticut, there are many families experiencing unimaginable loss in the wake of the school shooting tragedy. My heart and my sorrow is with them. 


The Batsman has never really liked Santa. Terrified is probably a better word to use. We have one poor quality photo of Santa and the Batsman together taken when our boy was just a baby. Even in that photo he looks frightened.

The Batsman’s autism diagnosis brought with it a greater understanding for me of where so much of his terror was coming from. It was then and still is now, about change to routine, feeling overwhelmed, strong sensory responses to noise, crowds and chaos and a very big fear of new or unknown things. We have tried a few times in the past to have a Santa photo taken but each time it ended in great stress, tears and meltdowns. While I would have loved a Santa photo, especially once little brother Bowler came along, there was no way I wanted to cause the Batsman distress to get it.

In the grand scheme of things, a Santa photo is probably a small thing to hanker after, but it was one of those things I felt like was a bit of a childhood rite of passage, a memory to look back upon and smile at. My little flame of longing for a photo of my boys together with Santa kept flickering but I had largely given up hope of ever getting there.

A few weeks ago our local shopping centre advertised a new initiative – “Sensitive Santa” – special booked sessions with Santa for kids on the autism spectrum. I decided that we would have one more try at it through this program and the flame burned a tiny bit brighter. As part of “Sensitive Santa” we would have a 20 minute private session with Santa in the early morning before the Christmas chaos of the shopping centre began at 9am. The shopping centre customer service team were exceptional, ringing beforehand to confirm our time and “find out a bit more about the Batsman so they could brief Santa”.

We did a little bit of preparation with the Batsman (but not so much as to overwhelm him) – we read some stories, we practised some things he might say to Santa and we watched some YouTube videos of other kids meeting Santa. The morning arrived and off we went at 8am for our “Sensitive Santa” timeslot. I could write on and on here about what happened but the pictures tell the story much better than I could.

The Batsman took his time to get used to his (quiet and calm) surroundings, he chatted to Santa and showed him his shoes with the flashing lights, he told him what he wanted for Christmas and when we said goodbye, he HUGGED him.

I cried a lot. Tears of so much happiness leaked continually from my eyes that day. And they still are. The long wished for miracle of a photo of both boys with Santa came our way along with the very grateful reflection on just how far our Batsman has come in the last three years.

In the bigger picture, I was incredibly moved by the thought and care that Highpoint Shopping Centre put into this initiative. There was sensitivity and respect and a very real commitment to putting one of those “childhood rites of passage” within reach of families who love someone on the spectrum.

Happy Christmas from my family to you and yours.

Disclaimer: This post is my own description and opinion of our “Sensitive Santa” experience at Highpoint Shopping Centre. They did not ask me to write this post. It’s just written by a happy mum.

Big4 Bellarine - the real deal

I haven't done much work with brands.
I have kind of tinkered around the edges.
And mainly I have told myself it is because I just don't have time.
Sure there is a part of me that likes a little bit of free product here and there. But when it gets down to it, I think the real reason is that a lot of the time I find all the marketing mumbo jumbo a bit uncomfortable and disconcerting, especially if I feel like me (or my readers) are having some sales pitch rammed somewhere it doesn't need to be.

But every now and then, something comes along and you know it's the real deal. No bull. No ramming anything anywhere. Just the real deal.

Last weekend I had the great fortune of being one of 40 mums invited to a sleepover event at Big4 Bellarine Holiday Park just a little way from Geelong. Lots of others have written posts about what happened on the weekend so if you want to read about that go here and here. Suffice to say we were well fed, watered and pampered. It was a lovely break.

I was particularly impressed by the way Sophie, one of the co-owners of the park, told us the story of how their wonderful park came into being. She told the story with thought, honesty, grace and the fabulous sense of humour of someone who has put it all on the line to get a business going and is giving it a real crack. Hearing the story was one of my favourite parts of the whole weekend. I really truly love it when people's authenticity shines through and with Sophie it shone brightly.

I have booked a little winter break for later in the year at Big4 Bellarine. I am really excited about showing the Captain, the Batsman and the Bowler around all the fun facilities they have. I have had a good chat with Sophie about autism and how that affects our family and how it can make holidays a bit tricky. She really listened.

I already knew Big4 Bellarine was the real deal after my weekend experience but you know when I really knew?

I knew when a little package arrived this week. It was personally addressed to the Batsman....a social story to help him understand where he is going on our winter break and what it will be like. It's this kind of stuff that makes the big difference. The Batsman loved it. You should have seen his face.

Yep. The real deal.

Final words: I had a great time at Big4 Bellarine. I was not paid or asked to write this post. I just wanted to share something real. Really. xx

Light in his eyes

Have a look at my big boy.

Pay particular attention to the light in his eyes.

Pay attention too, to the smile.

He is, for the most part, becoming more confident in himself.

He has learnt stuff, he can communicate about it, he has the capability to learn so many more things.

He KNOWS he has that capability.

That's where the light and the smile come from. The knowledge of his own potential.

This place, the Learning for Life Autism Centre have played a major role in giving our big boy that gift.

They do amazing work.

The work they do costs a fortune to deliver to children like the Batsman so Learning for Life raise funds to try to ensure that kids who need autism early intervention therapy get it.

Leonda by the Yarra is a stunning function centre by the Yarra River in Melbourne.

Next week, Learning for Life will hold their annual fundraising ball there.

Leonda have generously offered ONE DOLLAR to Learning for Life for every new Facebook "liker", Twitter follower, and LinkedIn connection for the whole of November.

So, all you have to do is click on the links above and make those social media connections and you have done something in the here and now to support children with autism to be all they can be and know it.

Thank you.

The Melbourne Symphony Orchestra, autism style

The Batsman and I were very lucky to be invited to go and see Classic Kids 3: Clowning Around with Melvin Tix on this Saturday just past. The performance was part of the Melbourne Symphony Orchestra's "Family Classic Kids" program which aims to introduce kids to the delights of instruments and music. I was so very keen for us to go to the concert (and take along the Batsman's best friend in the whole wide world, the Curly Haired Girl) but I was nervous at the same time given the Batsman's fairly regular episodes of extreme sensitivity to sound. Our Batsman loves music and so this opportunity was way too good to pass up. Sometimes you have to travel through a bit of a storm to get to the really amazing experience of a rainbow on the other side.

Lasting about forty five minutes, the performance of the orchestra gave children an amazing, close up experience with a full orchestra in an acoustically perfect auditorium. Wow. The genius in the performance is that friendly clown "Melvin Tix" is also the conductor, a fellow musician, balloon artist and all round funny (but gentle) leader of the show. His presence gave the children a pathway down which they could travel to find out about all the components of an orchestra. Intelligent, Accessible. Child-friendly. Fun.

When the full orchestra first played, the Batsman said "Mummy, it's too loud for me". The music coming from the orchestra was beautiful but yes, intense. Out of my handbag came the trusty headphones which he wore faithfully for the duration. They don't block the sound, they just reduce it so he was still able to hear and participate fully in the performance, albeit with a little less intensity for his ears. This was the very first time we had used the headphones and they worked a treat. The audience size is small so it really worked for the Batsman from an autism point of view, he wasn't overwhelmed by a huge crowd and there was the option of sitting right up close or a little further away. He also had the Curly Haired Girl by his side like she has been since they were both six weeks old.

Here's us at the MSO, autism style.




We have headphones!



Melvin Tix and the Melbourne Symphony Orchestra



Conducting the orchestra with Melvin.



Bravo! Applause all round.


 I'm just so glad we took the chance (and the headphones) and did it.

Disclosure:

1) I received tickets for 2 adults and 2 kids to attend the performance as the guests of the MSO. The Batsman and the Curly Haired Girl loved the performance so I am writing about it. I also wanted families of kids with ASD to see that this is potentially an accessible, child friendly entertainment experience.

2) My photos are a little bit dodgy because I left the camera at home. Enter smartphone.

Grateful, happy 2nd birthday Segovia and you get to do the giving

It's two years ago today that I began to write this blog.

Happy bloggy birthday to me. Happy second birthday Segovia, my little corner of the internet where I began to write for me again, to put into words what moves and inspires me and to capture moments in the lives of our boys and the experience of being their mum. Segovia began slowly and intermittently and it has taken time to get into a blogging groove. Now, I couldn't imagine life without this little space, without my other blog, The I Love You Song where I tell the Batsman's autism story and without the amazingly gorgeous people I have connected with through blogging.
Thank you for being here. I love it.

I love it too, that people mark blogging milestones and birthdays. One year, ten years, one hundred posts or a thousand, it is a wonderful thing to mark the achievement, the words put down, the self expression, the connections - all of it. Lots of people having blog birthdays manage to arrange fabulous giveaways and the like to celebrate. I have not been anywhere near organised enough to achieve that however I want to turn the idea completely on it's head.

It's Segovia's birthday and you get to do the giving. Stay with me and I will get to the point.

I have written before of how grateful I am for this place. The Learning for Life Autism Centre provide the Batsman's home based early intervention program and have done so day in day out for almost  eighteen months. The program and therapy team have made an extraordinary difference in all aspects of the Batsman's development and Learning for Life deliver the program with compassion, expertise, grace and respect. I am just so very grateful for all they have done and continue to do to support our precious boy.

Each year in November, Learning for Life hold a huge fundraising ball to raise money. Early intervention programs of this magnitude and intensity cost big bucks and are beyond the financial reach of most families. In addition to their therapy programs, Learning for Life and their volunteers fundraise to subsidise the cost of programs for families who would otherwise be unable to provide this type of intervention for their child.

So here is where you come in.

As part of the Learning for Life Ball each year there is a live auction and a silent auction where an amazing array of donated goodies fall under the auctioneer's hammer. If you, or someone you know, is in a position to donate an item, goods or a service for the auction, then I would love to hear from you. So far, I have gathered donated items as diverse as a professional architecture service package worth $3000, a grove of semi-mature trees ready to plant, cases of wine, a hamper of deli goods and gift cards from big department stores. The only real provisos are that the item or service would need to be redeemable in Melbourne, Australia and be something that you can imagine a crowd of some 350 enthusiastic ball-goers would be willing to bid for. Think big, think small - it could be anything!

If you are able to donate an auction item and help a child with autism receive a program just like the one that is helping the Batsman be all he can be, leave me a comment below with details and I will email you.

Thanks so much for reading this and helping me celebrate Segovia's bloggy birthday.

Have an amazing weekend.

Grateful for bloggy friends

Autism kicked my butt today. Anxiety and meltdowns were the order of the day for precious eldest. It was a tough afternoon with little rhyme or reason.

So often now, my online life is the place I go to for solace and comfort. I went there tonight. I blogged and I tweeted. Those bloggy friends, those connections forged through great gals being willing to read what I share and to share with me, they came in numbers to comfort, encourage, make me smile, share and empathise. Lucky me.

There are great supportive people in my real life too, it's just not as easy to connect, to share what's going on, to ask for help. Our online presence has certainly changed the way we do connection don't you think?

So this week's grateful shout out goes to those beautiful bloggy friends who cheer me on so consistently.

You know who you are.

Know that I am grateful.

PS: Thank you to all of you who read here. I love it that you are willing to read what I write. In case you didn't know, I write a blog exclusively about the Batsman's autism journey over here at The I Love You Song. I'd love you to follow me there too if you are so inclined.

PPS: Thanks Maxabella for the Grateful link up.