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.
