"I won’t pretend it’s easy to watch." How you react when you see my daughter with special needs.

I walk down the street with my daughter’s sweaty hand in mine. 

Her gait is slow, and her voice is booming. When she was very little, I used to wonder how long it took for people to realise that she had special needs. Was it instantaneous? As soon as she began to talk to them? I would search their faces to attempt to work it out. 

Yet as she has grown, I do not have the luxury of such naivety. 

Watch Mia Freedman chat to Vanessa Cranfield about parenting a child with a disability on the No Filter podcast. Post continues after video. 

She is 14, yet she carries her favourite doll (or three) everywhere we go. 

She regularly has loud outbursts and approaches random strangers. What was once just cute, is now very obviously not age appropriate. Her behaviour on a given day, or at a given moment is dependent on her mood, which is impossible to preempt or predict. 

One day our walk may be completed without a hiccup, the next it may result in a meltdown over the fact that I allowed her a chai latte but not a brownie to accompany it. 

My daughter is extremely funny and loveable, friendly and sweet, and she has special needs.

We are mostly greeted by strangers and acquaintances with kind, knowing smiles, offers of friendly conversation and polite indulgence of her many questions. My daughter’s wit is dry and hilarious, often prompting much laughter, and I know and feel that she is adored by many. 

When I am honest with myself, I also sometimes see the fear in the eyes of little kids who have not been exposed to children like mine. It is not their fault - they will learn. But I also see a different kind of fear in their parents' eyes.

Behind the smiles and the mostly genuinely friendly responses, I see minds ticking. 

"My daughter is extremely funny and loveable, friendly and sweet, and she has special needs." Image: Supplied.

I was once at a hairdresser who, while my hair was being coloured, asked me repeated personal questions about whether I knew during pregnancy that my daughter would be born with special needs. I deduced immediately (and correctly) that she was pregnant and hadn’t yet announced it. I understood at that moment, even though my daughter is the love of my life and an absolute blessing, the fear she had that her child would turn out like mine.

This is a natural fear of a pregnant mother, but for me it was offensive and personal, and I didn't want to know about it. I went home and cried. And then I moved on. 

The reaction I get isn’t usually quite so obvious and brazen. The words that are repeatedly offered aloud to me are "you are so strong", and "you are such an amazing mother." 

"Your daughter is so lucky to have you."

I sincerely appreciate these words and know that they are well meaning. They bolster me and acknowledge that there are challenges I deal with on a daily basis. I don’t want people to stop offering these positive words to me. 

But sometimes I see glimpses of the thoughts that are bubbling beneath the words. 'I am relieved that this is your situation and not mine’, and ‘I’m not sure how I would handle the situation that you are in'. 

It is not exactly pity, that is too strong and defined. 

But for a moment they imagine how their life would be if they had a child with special needs. They imagine it and then they feel gratitude that they are able to dismiss it and not own it. It is a fleeting, unconscious thought, but I know that it is there. 

I recently read an enlightening piece by Natasha Sholl who describes people’s reactions to the loss of her partner followed by her brother: "'I could never…' People say to those who continue to put one foot in front of the other, as if we have some choice in the matter. Yet it’s just another attempt at 'othering' the person."

Although a completely different situation to disability, the theme and response still resonated. 

When people try to comfort you, they do so in a way that distinguishes your life from theirs. They say that they can’t imagine what it must be like for you, but really they can imagine it and they have. 

So too is the reaction that onlookers have when they watch my life unfold, the ‘othering’. As if to say: "Thank god it’s happening to her, and not to me."

Listen to the No Filter episode with Vanessa Cranfield on raising a child with a disability. Post continues after podcast. 

It is sometimes difficult for others to know what to say when they are confronted with things that they themselves fear. I would never want people to feel that they have to walk on eggshells with me, or put too much thought into what they say or think. I am a positive person and I give people the benefit of the doubt, usually assuming that their motives, thoughts and actions are positive. 

And mostly they are. Being blessed with an optimistic character has been my saviour and also my coping mechanism. I do not want to let that go in any way. 

But I am going to push past my natural inclination to wrap these thoughts up with a solely positive spin. Instead, I will simply acknowledge the uncomfortable idea that responding to challenges of any kind, and particularly disability and difference is messy and difficult and no one of us is prepared for navigating it more than the other.

There is no ‘right’ thing to say and there is no ‘right’ way to feel. There is no script to read from and no handbook with rules. 

And that, like all things that deviate from the expected, is very confronting for people to deal with. People see themselves in every situation, like a mirror reflecting back their own lives - what they could cope with and what they think they could not.

But while it is completely natural for others to go through this assessment of their own lives when they see my daughter, just as I would regarding other people’s difficult challenges, I won’t pretend it is easy to watch. 

Feature Image: Supplied.