"The sad fact is, when you have a child with special needs it is tough enough, but tougher still, is that other people are not very kind."
A CHILD in a wheelchair. Your first thought?
Sympathy. Heartbreak for the little one who is unable to run around easily with her friends, whose life will not be as easy and carefree as that of her peers.
Yet every day, every single day, parents of children with more invisible disabilities have to put up with the judgemental stares of others in the street and the barbed comments, which can make an already stressful situation unbearable.
There is no worse place than Facebook for people to air ill-informed judgements. The other day I read a particularly unscientific and ignorant diatribe from someone who decided that children are labelled too much these days when back in the day they would have 'got a wack' (sic).
She decided, in her wisdom, that naughty children are these days given 'labels' as an excuse for their bad behaviour, when really they just need discipline.
As a mother of a child with high-functioning autism, a particularly misunderstood condition, these comments are not only hurtful but a direct attack on my parenting - as personal an attack as it gets.
My child was only diagnosed a little over a year ago following a lengthy diagnostic process, after years of trying discipline, consequences, anxiety treatment – just about everything you can imagine. Harsh discipline in the heat of the moment just made things a million times worse.
Parenting a child with invisible special needs requires an ocean of patience, huge strength of character, an ability to fight for your child until you are broken, and the necessity to explain things to almost everyone you encounter.
If she was in a wheelchair, no-one would dare utter a critical word. Thank goodness, she isn't. Most of the time you wouldn't even suspect there was a disability there. – she seems like a 'normal' or as we prefer to say, 'neurotypical' child.
But she has a hard time regulating her emotions. Things that seem small to you and I can bring on anxiety so overwhelming she can't control it. To the untrained eye, this could look very much like bad behaviour, but, believe me, giving her a 'wack' or shouting would make everything worse.
In the face of an autism meltdown, parents have to stay as calm as possible until the child is calm. They often can't hear, can't see, and all they can do is feel these emotions. Trying to reason with them at this point is impossible. Again, the untrained eye would just see a parent 'letting their child get away with it', when in fact it is restoring calm. The discussion or discipline has to be saved for later.
As autism parents, we are used to our children being gawped at when they lose control.
I have seen one mother's lip curl in judgement on more than one occasion as she has watched my daughter struggle. I try to ignore it, but the heat builds up in my face, the panic in my chest, and then I wonder what judgements they will make behind their hands later about my parenting.
The sad fact is, when you have a child with special needs it is tough enough, but tougher still, is that other people are not very kind.
Some years ago, the people who run parenting website Mumsnet were shocked when special needs parents shared their stories of people tutting from the sidelines and began a campaign encouraging people to think more about the realities of life for these families.
These children need love, kindness, patience, understanding and, yes, discipline, as all children need. They don't need their very real medical conditions stigmatised as bad behaviour.
My child is my life – she is wonderful, clever, funny, stubborn, compassionate, and yes, she is autistic.
She does not, repeat not, need a good slap.