“I would never wish this journey on anyone,” writes a mom from Australia.
By Sarah Mills
A little over a week ago I shared some of my feelings around living with children with autism. [Blog link]
I was absolutely blown away at the response from the post. Thousands of carers feeling heard, feeling validated.
Each of us loving and adoring our children more than anything, but acknowledging the exhaustion and the heaviness that comes with raising a child with additional needs. Society would have us feel it’s not okay to feel tired, it’s not okay to feel heartache. Autism has a giant puzzle piece representing it that we are all supposed to worship. Carers needs neglected and forgotten.
You only have to speak with any carer that’s battling the NDIS to know how disregarded we are.
Today in my memories came up a post I had written a year ago, this post also blew up. I received death threats, I received message after message telling me I don’t deserve to be a mother - I was even drawn hanging from a puzzle piece.... However - just like my recent post, I received message after message from exhausted carers, thanking me and for showing them they aren’t alone in their feelings.
So obviously this is still such an important message to be heard. It’s okay to be exhausted, it’s okay to hate something that causes your child so much pain and anguish... you can hate a disability and still love your babies and being a parent.
So... Here are my words from last year... I hope it helps some of you realise - you aren’t alone, and you are doing an incredible job.
I have posted some pretty controversial posts on this page but I have to admit this topic is the one that has actually made me sick..
I have gone to write this many times and delete as soon as I begin typing.
It’s thoughts and feelings that are heavy on my shoulders every day and I feel pulled to share my reality.
I always try to be as raw and real here as I can be... not just for myself to have an outlet, but to reach others that need to see they aren’t alone.
So I’m going with my gut. I would like to make it clear that my heartache is not intended to offend, but to share. I don’t seek debate, just simply, just maybe, some understanding.
The thing is, I love my children more then anything in this world.
But I hate.... Autism.
I hate it with every inch of my being.
I know as autism parents we are supposed to love it, supposed to embrace it, to celebrate it. But today I am battered. I am bruised. I am traumatised. And I am so sick of feeling completely alone because if you’re not making it all out as quirky habits and fucking rainbows, then you’re a shit parent.
I know I’m so lucky that my children are classed as “high functioning”... in the world of autism I know it could be much worse... and I don’t for a second pretend that I have it worse off then anyone else... but... I would never wish this journey on anyone.
I am so angry at this label. This one simple word that instantly means that I am supposed to be shouting with pride from the rooftops. This one label that suggests that it’s ok for me to be beat on. To be screamed at. Clawed at. Abused. Wished death upon. Hated.
I live at the mercy of completely unpredictable, uncontrollable mood swings. From a child who is growing stronger, smarter, and crueler with each meltdown.
I see adults living with autism tearing carers to shreds online, saying they have no right to complain, no right to be upset and I sympathise that they feel attacked but why are we not calling a spade a spade?
Why is this world turning so politically correct that a disability is only allowed to affect the person living with it?
The carer doesn’t matter, they simply exist to cater to another persons every whim, and to cop a beating in my case is “parental responsibility”.
We have this growing epidemic with more and more children diagnosed with autism every single day. Instead of looking for ways to curb this, or change this, we are simply pushing to embrace, accept and adapt.
“We have this growing epidemic with more and more children diagnosed with autism every single day. Instead of looking for ways to curb this, or change this, we are simply pushing to embrace, accept and adapt.”
Simultaneously, the government slowly strips away all services and access to interventions that could possibly help parents struggling. Parents who cannot work due to being full time carers for their high needs children. And are told that somehow coming up with money to fund therapies and support is parental responsibility.
Parents are forced to beg to help their child... we fight, we beg, we plead. And then we are turned away.
Carers pushed to absolute extremes in order to “prove” they need support.
A task that the NDIS seems to want to make so tediously impossible, that many end up with no help at all.
A high functioning person with autism may be able to communicate with peers, they may be able to read and write... but it often means that socially they struggle, emotionally they struggle, at school they struggle, with concentration they struggle, with consequences they struggle. Their frustration overwhelms them, they lash out. It is HARD.
If a carer had a partner that emotionally abused them regularly and physically attacked them frequently- everyone in their life would encourage them to leave…
But you don’t have that option as a parent… love and support them through it all, but years and years of abuse is exhausting...
Eventually your spirit breaks…
I don’t even think it’s the physical attacks that hurt me the most anymore… it’s the words... it’s knowing that I give every inch of myself, devoting my nights to researching everything I can that may help, to sacrificing my own needs to put my children’s first, to fighting a broken government to access the support, to travelling back and forth to therapy, to getting up every morning and trying again all the while being told I’m worthless and never doing enough.
The glamorisation of Autism makes me feel so inadequate. The stigma around carers who struggle, or parents who fear it, makes me feel like a complete failure.
I’m loving, I’m accepting and I’m busting my god damn arse. Now what?
I’m so afraid of when the next outburst will be, so terrified that I won’t be able to control my child’s next outburst and that I’ll end up in hospital... or worse… my mind spins 100 miles an hour.
Autism isn’t a colourful puzzle piece that needs celebrating... autism can be absolute hell and it scares me at how normal it’s painted to be now…
“Autism isn’t a colourful puzzle piece that needs celebrating... autism can be absolute hell and it scares me at how normal it’s painted to be now.”
How many carers need to completely break down before people realise this again?
Should every disability be accepted? Absolutely... but should we also stop pretending autism is no big deal? ABSO-fucking-LUTELY.
To the mums... (and dads) that happen to feel this way too... you aren’t alone... you are doing more work then most will ever know and you are doing the best job you can... in at times, the worst and darkest times of your life..
From an autism Mum barely hanging on, that finds it completely insulting that my child’s brutal struggles, and my brutal struggles to give him his best life, can be narrowed down to a cute little puzzle piece that just needs to “fit in”. From a Mum that thinks this puzzle piece can kindly fuck off.
Sarah Mills is an autism mom who lives in Australia. This piece is reprinted with permission from her blog on Facebook, Amongst the Stars.
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.