Knowledge is power

I am learning that KNOWLEDGE about Autism is a good thing. I remember attending the autism Asia pacific conference in September and there were many parents and carers who said they had gained a degree in autism.( Not with paper, just with time) The questions we ask, the websites we visit , the endless resources we buy and the people we talk to all to try and find a way to decode this `autism` thing.

One presenter( Livan Jones) a mother or 7 year old Caleb, said ``I am my sons biggest voice I don't know autism but I know my son``.
This for me rings true so much. I am overwhelmed by this gigantic thing that encapsulates my son. Questions that I have. How will he cope in kindy? How will he share? How will he move on from obsessions? Will he misunderstood? and yes... meltdowns.

I have the absolute advantage of teaching at the school where my children go. And I LOVE my job. I LOVE my colleagues. They are really seriously amazing. The amount of angst and love that I see behind the scenes from these teachers is real and rare. I know my boy will be in beautiful care. But Autism is still such a strange and unusual thing.

The quote ` When you have met one child with autism, you have met one child with autism.`` is very true. So its not a case of one size fits all. If I can be part of a process where I can educate and inform teachers and parents about what autism sort of looks like and give strategies I am hoping this will be okay. But is it enough?

I have heard stories from parents where their own darling did not receive any birthday invites since Year One. Where these children are `tolerated` but not picked as the first child to be in a group for an activity.

I see it. I see this happening with children who have autism. Will I need to beg mums to invite my boy to a birthday party? Will I have to have play dates and bribe the children with a freddo to join in his games? Will I have to awkwardly smile to face the wide birth of parents who have stories of my boy hurting, hitting , crying their child? Will he ever have a soul mate ?
Will he ever have a friend who will travel through their school years with him and want to be his friend just because he is?

I know these questions are crazy. My boy is three. A beautiful three year old who giggles at the stars at night. But he is about to leave his protected little cocoon that Chris has given him so wonderfully into a bigger world where not everyone will be an aunty, a cousin , an oma... who are so precious to me for the way they put up with his quirks.

I have to believe that knowledge is power in autism. Maybe I can be part of a world which will create a united togetherness as we educate those precious angels who are born with autism.

When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile. ~Author Unknown

The things that make him smile...

I may have been born different and misunderstood from birth, but I know there is a place for me, somewhere in this universe. -
Alyson Bradley

I was home today as I had another long drawn out dental appointment for a broken tooth. I took advantage of this to spend time with Giggles as life has been too busy of late. With reports, tests, endless conversations with teachers and parents , teaching and caring for my 26 munchkins I sometimes have little time left for my own gorgeous two.

I took him to mums this morning at 7 am as I am running an extension phonics course for some of my year 1s in the morning before school. ( Been very rewarding and fun so far!)

Well driving to mums wasn`t quite what I hoped... in fact after picking him up at mums ( after he demolished 2 icypoles wanting more , all at 9 am ) the whole day I found myself looking for Chris to help me work out what to do. Giggles had a meltdown in the car and continued to have repeated meltdowns for the rest of the time I had with him.

When he cries I just dont know what to do. Today the vacuum cleaner hose wouldnt come off the Dyson ( bloody thing!) and so it went...

I found myself calling Chris trying to work out the technicalities of pulling it all apart so he could just feel okay again.

As a parent there are voices telling me , `` Just distract him, teach him not to attach...`` but in those moments his ( and mine) heart is breaking and he and I cannot connect as I fail to see his fascination with it being so perfect. Its a weird kind of love but I just need to see him happy.

I admire my wonderful husband who has the patience of someone who takes one step at a time to have this universal language with Giggles.

As a working mum I feel I have lost the skills . I think I am more determined to forget all others hopes and regain some of this again. It is others in my life that need to be disappointed for a change, not my kids.

This past week I have laughed too. From watching his eyes light up at discovering fan collections on You tube to enjoying the sand , mud and water at a natural playground, its been great!

There is no one else I know who would enjoy pouring sand all over their heads and demonstrate a joy with it that is heavenly . I just LOVE seeing the world through his eyes. Did you know that squishing your fingers in mud is divine?

So even though I still have so much to learn and that I misunderstand him, he has his place on this earth and I am going to help him find it.

So What Does Autism Look Like?

Sometimes it kinda looks like this... Giggles playing at Ikea.

Just Give Him The Whale

A couple of months ago my husband , Chris and I went to the Asia Pacific Autism conference in Perth at the Burswood. It was a whirlwind of events, lectures, workshops, people, books, flyers and emotions all packed into three full days.

We were generously supported by my mum and dad who paid the large registration fee for us to attend to start our learning journey about our son ,Giggles , 3 who was diagnosed with Autism early that year. After 12 months of agonising waits to see specialists, heartbreaking moments of not knowing what to ask God or friends and anxious times where we held our breath as we shared with a precious few what was happening in our lives, we were given his official diagnosis in June this year.

I have decide to write because I need to share. Pure and simple. I don`t even mind or care if people read it. Its for me. Even if it may be a few family members or friends. I want to shout from the rooftops that my son is gorgeous and precious and amazing and I want him to grow up knowing he is adored and loved. I want this world to engage with him even if he doesn't engage with it.

The title of this post comes from a book that I found at the conference . Just Give Him The Whale is a book stood out to me immediately as soon as I saw the cover. My son has woken up repeatedly for the past three years desperately wanting a shell , drill piece, a fan and even the vacuum cleaner. Chris and I in those moments of desperation ( and desire to go back to bed) have found these little treasures in the middle of the night to soothe our distressed little boy. And it works. Ignoring all parenting advice from magazines, books, experts , this seemed to work. Methods of trying to encourage him to sleep and stay in bed without the need for these items were futile, long drawn out and complete failures.
When I saw this book, my heart skipped a beat. Someone understood!

The introduction in this book told this story:
Pedro, a little boy with autism, was screaming in his kindergarten classroom on the first day of school. Ms. Gomez, the principal, heard the child`s cries and walked into the room. She observed two colleagues discussing the appropriate way to deal with the situation. It appeared that Pedro had started crying because the teacher had taken away his favourite whale toy. Believing her new student would be more successful without the ``distraction`` of his favourite possession, she had decide to try and hide it from him. The teachers co -partner, a special education teacher had a different perspective on the situation. `` What do you want him to do? `` she asked her colleague. `` I want him to do his work. I want him to participate, `` answered the teacher. The special education though for a minute and replied, `` Then just give him the whale``

After the incident, the teacher, Ms Gomez started bringing Pedro photos of whales to cheer , support and connect with him.

I love this. I want Giggles teachers and caregivers to cheer , support and connect with him.
As a school teacher I have a unique position of working with children with autism as well as being an advocate for my own child. I want all schools to be like this one. To be confronted with a need to change and then making the decision to do so.

As a mother of Giggles and to a just as gorgeous daughter, Tickles ( who does not have ASD ) who packs a beautiful punch to our lives, I want to be one who is confronted with the need to change on a daily basis.

Giggles has already taught me to look through his world. He is a dreamer skipping through our realities. I have begun to discover that filling your pockets with gravel stones at a nursery is far more interesting than shopping for plants , and that sitting on a grass tree can actually be a very comfortable chair.
I have learnt that there are spinning fans EVERYWHERE we go. Even in lifts and elevators. Yes... look next time.
I also know that there will be moments when he will cry and cry and cry .... and we just wont know what to do. Here's hoping we will get better on that one
I know he will be adored. he is already cherished by my family and I know he will be celebrated for his unusual quirks . I love my sister for making him birthday cakes with pinwheels, my parents who buy him a pinwheel at a fete and my amazing husband who will sit with him for hours in the sandpit feeling the grains in his fingers. Thank you to you.
So to our little drummer boy, while the world looks on, let us dance to your music.