The days I can't work out if I love or hate camping

I have been away in Kalbarri on a camping holiday. I have a love / hate relationship with camping and every year I hope to make our camping experience better ;) Seeing the gorges, swimming in the ocean, the sunlit walks are the gold. Camping in the heat, blowing up your stove while making lunch, having no sleep because of noisy neighbours is the pure opposite of that gold. While driving home it's helped me reflect on the love / hate relationship I have being a parent to children with special needs. I'm hoping this will help open your world a little wider to those unique and beautiful children you may know in your own life or the ones you are yet to meet.

Firstly, if you have had the joy of having a child that makes your heart ache with love and worry with stress for their wellbeing, please join my village. 

I want to see if I can help extend that heart of yours a little more wider as I share part of my story. 

Before being a mother to a child with autism I saw autism as a child disconnected with his world, being non verbal, having tantrums and disabled. 

I now think differently. 

It's a spectrum and my son is on one point and we all fit in between. Not one child is the same as another. That famous saying, " Once you have met a child with autism, you have met one child with autism." 

With the greater increases in recent years with children receiving an autism diagnosis we all try to piece together the reasons why this is happening in our modern world ; whether it be suggestions of diet, genetics, product of a geeky dad and artistic mum, to other insulting reasons like vaccines or drinking orange juice when pregnant. I actually don't desire to find the source as I don't have the time. I am very hopeful and thankful for the incredible scientists who are researching this and that one day we will find a cure. My job and my desire is to just become better educated in my one square metre of about autism and how to make lives a little better with what I learn.

I often heard in our early days of diagnosis that our son may struggle to make friends, miss birthday parties, but that's okay because he won't know the difference. Well this son of mine, does know and he loves relationship with others. He may not always have the skills to ask for them but they are a treasured possession. If I could hug and kiss every child and parent who has made an effort to love my son and be part of their world I would. The times you stay with him talking about the sharks in the ocean, made him a piece of toast with Nutella ( after he rejected your baked beans ), collected a shell from our holiday or a found snake skin to gift to him, you will always be held deep in my heart. I can never ever thank you or repay you for that love. You know who you are.

Then there are times where I lay in bed late at night fretting over my children's future. Is he gifted? Is he highly intelligent impacted by a disability that doesn't let him communicate ?  He can draw! He can create! He knows the anatomy of every sea creature on this planet!  Will he become a Scientist at NASA or be happily living his days out as a gardener? ( I love gardening and the people who nurture our planet - let's just put that here ) ; just making my point 

I have discovered that I have needed reserves of energy and emotion to educate regularly, and trying to be an expert when really having no idea.

I learn about the latest Intervention and it gives me hope. Then I'm confused about choices and pathways and then discover it costs thousands to employ. 

I have learnt Intervention can be life changing or absolute waste of time me it can be expensive or it can be free. Sometimes its expensive and sh*t, others are free and brilliant. 

Then I think about his school  choices to improve social outcomes through alternative education but reduce academic ones. 

Choices for therapy? One size does not fit all 

Will we invest in Speech ? Psych ? Occupational therapy ? Iep planning ? Or all at the same time for a multidisciplinary approach? None which are guaranteed to make any changes, or they may actually change his life. Then comes the guilt. The guilt for neglecting my husband as every spare minute with each other is talking through therapies, parenting styles and plans for improvements. Guilt over taking funding from another family with greater needs. And lastly, guilt, for feeing angry, or tired, or jealous over other neuro-typical children . But then excited when a plan works ! Success has been achieved ! He can write his name! He can now ride a bike after 4 years of trying! He walked next to the trolley without a meltdown ; and those moments are exhilarating and full of hope for mores You get to fist pump the air and yell for joy and give your husband a passionate kiss on the lips ! You celebrate by phoning those precious people in your life who quietly live a battle similar to your own. Families of children with their own big dreams, and these same families of children with disabilities - autism, ADHD, celebral palsy any many more. These quiet heroes dance with you in their moments. And these milestones are never forgotten. 

Another day follows with disappointment when failure happens instead and the loss felt. The tears on your pillow and the weeping in the shower so Your kids can't hear you.  A good night sleep and renewed hope with a new plan for the new day 

Sitting on eBay for weeks at a time Finding that last Lego set that was on on sale 6 months ago but your child has only just caught the craze just now. 

The mother lion in my gut roaring so strong ready to tear to shreds any predator who may get in the way. But in the end it becomes a quiet, persistent gnawing on a bone until those small changes happen in his IEP and therapy. Ones that you believe will work this time around 

Some days are normal while some days normal is just out of reach. 

Relief in knowing that it's my genetics, not my bad parenting or taking medication in pregnancy was the cause of his autism. A momentary pause and breath of small relief until that guilt creeps in again where you question every little thing you have done, thinking " surely there is something more to be done". You question if you should have had kids at all ( surely being an anxious person in my teens should have taught me the outcome of offspring having the same would be great )

There are many days of joy. But underlying always is the grief over my son and others like him. 

In a classroom it's impossible to ignore the angst of parents who travel a similar journey as you teach their precious babies. Wishing and hoping and making their little dreams happen on a school day. 

Being a mother to a child with autism, dealing with assumptions that you should  have every child with autism in your classroom as you have the strategies. Not understanding your heart will never say no, but your body breaks a little more in exhaustion as you sit alongside a child with autism in your lunch break to help him find calm. To only finish your day to go home and repeat the same with your own child melting down. 

The stress that fills your body. The exhaustion of fighting yourself and the world, ignoring their stares,  the energy needed to remain calm in the storms, the constant flight and fight syndrome of being prepared for emotions exploding at any moment. Over a shoe that feels funny, a carrot that is not orange enough and the roof that feels too small at Bunnings. 

You hear beautiful stories about your child and this soothes my soul. Keep them coming as every parent needs to hear they are doing a good job. Kindness is AMAZING on a bad day. Please understand that these successes are important for me to hear as this is a sign that some of the therapy you have invested in may be working. 

Then there is the financial side - schools, bikes, sensory clothes and toys, constant barrage of probiotics to keep gut health happening as sickness can be world war 3. 

Avoiding burnout - still learning this one. 

Sleep and autism are not always friends 

Some days " there has to be a better way" 

I want more than just surviving. 

I have dreams. We want to rejoice , we want to thrive. We want to make a different to the world.

Before children I wanted to be part of aid work overseas, foster children, change lives. Now, some days I'm not sure if I can get out of bed 

In that moment  kindness is like water to a parched mouth, confetti at a wedding and a balm to the soul. I want to spend my days on this earth loving others deeply with so so so much kindness. 

I want my hubby and I to have a long hard chuckle at what we once were. Before we were caregivers, to have conversations not revolved around our parenting , our children's emotional needs and the IEP meeting scheduled for the next week. I dream of the days when we used to go for a walk to our local gig and share a beer, or building a vege patch. Laughing about us. 

I'm committed to getting there. 

I'm committed to loving my husband more. As my best friend, as my companion 

I'm committed to taking in the beauties that exist only in a world with autism. Every shell, every rock, every insect , every twig holds a story. I just need to keep opening my eyes to see his beauty 

Taking joy in him, taking joy in her. Taking joy in them. Taking joy in this deeply precious and beautiful life of mine and theirs.

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