Lets give these gifts from God a chance

Last week I actually wrote a new blog post. It was titled, `Autism you can just f*ck off` . I wrote 20 or 30 lines of absolute rage and hatred for this condition that my beautiful boy suffers from. Then I deleted it. I had expressed my heart and sorrow and YES autism , some days you can f*ck off...

However , a leaf has turned.Today is World Autism day. I choose to use today to show that like myself there are thousands of children all born to families who love them and have autism. It does not take away my beautiful gift in my son.

Yes. My beautiful boy IS a gift. My precious gift who the day he was born opened a new chamber in my heart with his big beefy neck , chubby cheeks and his kissable soft smelling skin. He was perfect. The moment he was passed into my arms the love that enveloped me was indescribable.

Precious. My world was amazing, My family was beautiful. For 2 solid years I had the life of a stay at home mum to Giggles and Tickles. Despite the housework ( ! ) , I really LOVED it.

Then from 2 and 1/2 my sweet, content and smiling boy withdrew more. I couldn't get him to look at me properly. He seemed always drifting off. At this point I still didn't think there was anything wrong. It was just who he was.However in September 2010 my mum had one of those horribly terrifying but courageous moments in her life where she had to speak to me and Chris about her suspicions... that Giggles may have AUTISM.

We sat at the coffee table together on a Sunday evening drinking tea going over a list of potential RED flags that describe the behaviour associated with autism. My beautiful baby boy exhibited 90%. My gut told me she was right. Hopefully, please GOD NO, but I think she may be right. Following that evening and the week of crying at every quiet moment, a year of assessments and a diagnosis in 2011, Giggles recieved the diagnosis of Autism Spectrum Disorder. The diagnosis was the easy part. Even when people in our live thought we were ridiculous to pursue this diagnosis and made us feel pathetic. Just a few things Id like to share with you... If you ever come across  someone like our situation I pray you will be compassionate and gentle. Here are my top tips for you to know when talking to parents who have just discovered their child has Autism. (and yes, these all have occurred to me)

1. Do not recommend a course  of vitamins. Just because your aunty`s friend took a batch for her arthritis and healed her, this does not apply to autism. There is NO cure.
2 .Do not ask if we regret vaccinating our child.
3. Do not ask if we are finished with having children now that we have a burden on our hands
4. Do not tell us you think our child seems ordinary, and no, that cant be autism. ( He is like that because of the hours of intervention spent to get this result)
5. Please continue to say hello to our child even if he wont look back at you.
6. Please do not make it your mission to "treat" my child with a short therapy session because you think you have a way of getting him to give up "that" toy. He already has over 5 therapists in his weekly schedule and you are just NOT helping.
7. Please, please just listen, with love, no condemnation . We LOVE questions. Please not unfounded advice.
8. Please refer us to good evidence based research and information. We love to learn.
9. Don`t tell me my child is just grumpy and probably needs stronger boundaries.


Our journey has been mountains and ravines of emotions, sleepless nights of a gaining a Phd in Google, days of information, trial and error and incredible successes. But TODAY is world autism day and there are incredible things happening. Children are finding ways to be unlocked and loved through early intervention and it IS making a difference. With 1 in 100 children diagnosed with autism you will probably cross paths someday , and when you do, remember that this child was someone baby once , so please give them a smile.

 And just for the record he still has beautiful chubby cheeks and kissable skin!!

Will he sit on the mat?

Back to school. For most of us. Me, Tickles and now for the first time Giggles.
One and a half weeks in and I`m flopping exhausted.

Being a Year 1 school teacher I never seem to exactly remember the absolute comatose stage I hit at this time every year. Maybe I was too comatose to remember. How would I describe it. Meeting 25 new excited faces who start Year 1 for the first time. Meeting their parents for the first time. Their grandparents. Setting in routines. Battling the crazy heat we have been having, eating their lunch. Slowing all systems down as the children learn where to go to the toilet, where to go when you need a bandaide, how to rule up , remembering to pack a hat, and of course take lessons in history, science, maths, english , computing, sport, library , art, dance, drama... the list is like a Phd in Year 1. Seriously. These gorgeous darlings really are precious how they take it in their stride and trust me completely and after 8 days I`m in love. . How can I resist when they say,

`` Please Mrs Summerfield, when do we have free play? ``
And free play they have.... louder than a road train coming down a hill with its breaks on, but sweeter than honey from a hive.

Admist this craziness I have tried to catch those special moments when my Giggles has gone to kindy for the first staggered intake.

Day 1. At 10 am I had two teacher aides asking me what I should do to stop my son from screaming because he wanted his lunchbox. His father who unknowingly just packed his recess( which was he thought was neccesary considering Giggles day stopped at 11am )
He cried because his apple wasn`t his lunchbox. Because everyone had a lunchbox and he didn`t. The lunchboxes so nicely chosen on a Big W sale in the holidays in hopefully preparing him for a smooth day.

After Day 1. Discovered Giggles teacher ( who I adore !!!! Really she is incredible and I think she should get a 6 figure sum for being responsible for forty 3 year olds on a weekly basis) requested from the school psych to have as much as aide time as possible. :(

Day 2. Giggles discovers that  he can play with playdough, paint, sand and toy plastic fans. Even more so if he sits on the mat.

I love him. Even though he may jump up and down on his lunchbox screaming because he doesn`t know to zip it closed and roll around on the mat like a watermelon. ( Yes he does both), I love it how he will laugh out loud because his teacher draws a fan on the board to get his attention. I love the fact he has his best cousin Joel, partner in kindy crime to hang out with and to swap lunches with. ( Yes they did that too)
Even though there will be many tough days that define what is his schooling experience may be, I just want to see that smile. It is priceless and I wouldn`t have him any other way.

We are yet to find ways for him to ask for help and not scream in frustration. ( A goal for Term 1 at  his autism association  kindy which he also attends two mornings a week)
But we may have tackled the wriggles our Giggles has on the mat.
Its one of these...

GROOVY I know.

Its called a  Deep Pressure Sensory Vest.
Description is as follows:

``Designed with a latex free, breathable material, this material has perforations throughout the rubberized layer of fabric, allowing them to "breath" eliminating or at least reducing the problem of over-heating. It should be noted that even though this material allows the skin to breathe, it is still recommended that you periodically check for over-heating or skin irritation. Designed to "hug" snuggly to the body, providing proprioceptive deep pressure feedback, stability and skills evenly over the area worn.``

In other words this will help Giggles to recieve sensory imput to help him to calm down. He tried one at his therapy and loved it. We are getting one. Except when it arrives Chris is going to sew spaceman springy laces and rocket ship on the front. Or Elastogirl from the Incredibles. I want Giggles to feel like he is a superhero.

Because in our eyes, he is.

Some extra photos for the week.Our Dyson vacuum cleaner broke two weeks ago. Chris ordered a new motor and spent the afternoon reassembling it. Giggles idea of heaven.

 Sweet dreams my superhero...

Family like mine...

I haven`t posted lately due to taking a break for summer holidays. In short, enjoying my time with my little family and extended family. My sister has her own blog about her 4 kids and her latest post is all about Giggles. You may read it here . All I know is that I am very very blessed to have a sister like mine in my life.

9 reasons why I love being a mum to a child with Autism

1. Smiles from Giggles are always real and genuine.
2. The lump that I have at the back of my throat reminds me I have a God who always has a plan.
3. My sister will always remind me how blessed I am.
4. I have discovered I am fiercer and stronger than I have ever imagined. I will fight daily for the rights of my child to be loved, to make choices, to have an education... and whatever else he needs. I am reminded it is not a race, but a marathon.
5. I will get to experience a love that is deeper than anything I`ve ever dreamed of.
6. No milestone is ever taken for granted. A hello, a hug , a question is the result of many hours of therapy and hard work. ( ADORE my husband for this commitment he has put in)
7. I get to meet some incredibly amazing people. (Some Speech therapists, occupational therapists,Psychologists are REALLY amazing. Seeing their faces well up with joy when they see your son reach a milestone is priceless.)
8. I get to live in the moment. The world slows down as I hold his hand walking back to the car. He notices every bug, every stone, every blade of grass. It has forced me to step back and yes, realise, this world is a beautiful place.
9. He opens new doors for us each and every day . My expectations, beliefs and dreams are being redefined. I am actually learning not to care about ` others` feelings about us and as a result, I am feeling more at peace each day.

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.