Parenting a child on the autism spectrum delivers moments of heartbreak that are not easy to negotiate

My son's best friend is his six-year-old sister.

It is not because he doesn't want friends: Fynn loves being around people.

But he is very aware that he is different, and to others different can be awkward and best avoided.

Fynn is nine and quite the comedian. He loves life and wears his heart on his sleeve. But he notices the confused, judgemental looks when he speaks and his words get muddled. He sees other kids lose interest when he responds to them by squealing and running around flapping his arms.

The first clue

You see, Fynn is a child on the autism spectrum.

He was a bright and happy baby, always smiling but content to play for hours by himself. Looking back, I know this was our first clue.

There were others: Fynn took a while to walk (finally, at 15 months) but my concerns were appeased by friends who assured me "It's OK, boys take longer to do things".

By age three the tantrums began: late nights trying to get Fynn to sleep. His father, my ex-partner, and I tried everything to calm him. We sat guard at the door, our back to him, ignoring his screams for hours on end. The more exhausted he became the more he would fight: running, jumping, throwing himself at walls.

There were other signs too: he smeared faeces all over himself and his room and we were advised to respond with heart-wrenching cold showers that were supposed to teach him that it was wrong to play with the contents of his nappy.

Still, I wrote it off: his little sister was born six weeks early, he's vying for our attention, I thought.

"It's just boys," my friends assured me.

But the gut feeling that something was wrong would not go away.

Time stood still

When my brother visited from the US with his family, and stayed in my home, it became clear that Fynn was different.

I remember feeling suppressed panic when my brother pulled me aside and noted Fynn's lack of communication skills and interaction with his peers.

Time seemed to stand still. On auto-pilot I organised appointments with the GP and paediatrician, specialists, psychologists.

Deep down I think I already knew. I had done the research and I was prepared. But I was not prepared for the avalanche of grief that came next.

It was months before I could bring myself to accept that life would never be the same again.

At night I would cry for the life I believed he had lost and the dreams I had for him that had to change.

I cried that he may never become the astronaut he dreamt of being. Would he experience love with a partner? What hardships would he face?

But most of all I cried for his vulnerability. He is scared of going to school where he is teased for being different. He wears the coolest noise cancelling headphones money can buy because he thinks he will be teased.

I don't know how to find him the friend he so desires.

Have I failed him?

His enthusiasm brightens my day: how lovely it is to have someone so happy to meet you.

But I am also his punching bag when things get too much: I become exhausted by the hate he projects at me when he feels frustrated or misunderstood. He hits himself, and me, because I am his safe place.

Fynn's problem is not self-control. He has a sensory processing issue. He can't sleep at night because his body didn't release the correct hormones to allow his little body to fall into a slumber. In the daytime, the more exhausted he becomes, the more he fights.

I feel exhausted and sick from being constantly on high alert.

Yet there is a lack of support for me and I don't know how to negotiate the isolation this life has brought.

I keep smiling when people tell me how resilient and strong I am, but they'll never understand. It feels like nobody understands and nobody wants to hear the truth. Reality is awkward.

I do my best to organise play dates and foster emerging relationships.

And I do my darndest to apply an "aeroplane model of care": look after yourself first, so you can be the best parent possible for your child.

There are brief moments of being Claire first and Fynn's mum second: a dinner out with friends, a business meeting where I can be "Claire the career woman" and not "Claire the single parent with a child on the spectrum".

The perpetual loneliness

But there are moments of heartbreak that are not easy to negotiate: the foyer chatter when you overhear parents reminiscing about a weekend birthday party that your child wasn't invited to and the sudden silence as you approach (followed by silent tears that night in the shower because you had to keep a brave face while your heart was breaking for your son).

It's the "let's catch up when you don't have the kids" and feeling fake because you don't want make them feel uncomfortable by querying "why no kids?". (You know why).

It's the phone that never pings with an invitation and the uneasy delay in replying when you ask "can we come over to play?".

It's the lack of understanding from those who say "I see you've got a lot on your plate/you should get out more/do something for yourself" when socialising and being around people is exactly the self-care you need to break the isolation but the invitations are not forthcoming.

It's the paltry four nights a month you have free when your children go to their father's house but feel too exhausted to do anything more than sleep.

It's the fear of dating because you've convinced yourself that no-one would willingly volunteer to take on a child with special needs and love them as an equal

It's the reduced income you accept because normal office hours don't allow the flexibility to attend therapies and appointments. There are only so many times you can say "I can't afford it this week" before the invites stop arriving.

It's the early nights in bed, because sleeping is easier than enduring the perpetual loneliness that creeps in once the children are settled and the velvet cloak of night closes around you.

In those moments the silence is deafening.

Unconditional love helps us grow

It's the immense personal growth required to overcome rejection to be at peace with your own company even though you've always been an extrovert.

It's learning to appreciate that the people who have faded away have left space for those who truly enjoy the company of your family.

This is life with a child on the spectrum.

Am I tired and lonely? Every. F***ing. Day.

Would I change it? No. I love my son, just as he is.

We came together in this life for a reason, and I'm grateful for the unconditional love we give each other as we grow together and become better people.

He is my joy, my frustration, my friend.

Source: ABC