It’s been a rough day.
Today I have been punched in the face, kicked in the shins (It always surprises me how much that hurts) I have been screamed at, scratched – I’m bruised and bleeding in various places; my skin stings.
I have been told that I’m no good, that I’m hated. I’ve had meals thrown across the room in defiance because they weren’t good enough. I’ve had to break up fights and safeguard my child.
When I talk to friends and family about the challenges I’ve endured on a particularly difficult day, I know that they want to be there for me, they want advise me, to offer solutions, to fix the problem and to understand; but you see they can’t.
They may understand that by the end of the day I’m exhausted from being housewife, cook, teacher, entertainer and care giver, but they cannot fathom the emotional rollercoaster, the constant demands, the being on egg shells, being ultra- sensitive to our surroundings, attempts at safeguarding my children and myself – from each other – from them….. that all I can manage is to eat half of my poor attempt at dinner, and stare into space until I fall asleep. Bathing, catching up on a book or TV show, cleaning up the dinner dishes or putting away the craft we did that day, It will all wait.
Taking hours of emotional and physical abuse every single day from the little human beings that you love and treasure more than anyone on this Earth, flinching when they fling their little arms towards you and then feeling guilty for doing so when you realise they were running in for a clumsy hug. Taking the disapproving tuts and stares when out in public and one of them experiences a sensory overload and so starts to kick, hit, scream and bite, the unwanted advice from people you barely know about “being tougher on your child” because they “don’t believe in Autism or ADHD”.
Fighting battles upon battles over many years to obtain understanding and support for your children in day care or educational settings, going through the judgement that we all do with the knot-in-your-stomach type questions such as “Is everything OK at home?” and “What is your discipline routine?”. The medical appointments where they all turn to the Mother and ask “Was everything OK in your pregnancy? – any smoking or drinking during those 9 months? Any issues bonding with your baby?” Each question from well meaning; but ill-educated friends asking “Is there anything you could have done to stop your child from hurting you so badly?” All these questions hanging above your head – like 6 ft neon finger sign pointing at YOU. These things fester and build inside your body like a disease that resurfaces every time you have a hard day and feel the dreaded burn out.
As emotionally responsive, empathetic and well entuned parents we find it all too easy to give, and give, and prove ourselves to every single other human being we meet, every day when it comes to our children being on the spectrum. We understand that these routine appointments need to happen, we appreciate the fact that we have eventually received a diagnosis or some form of support for our child…. That is the scope of support, there is no practical advice, no support network for the parent themselves. No one seems to care, no one seems to understand.
Many times I sit with my eyes glazed in exhaustion through meetings for my child and I sneer inside when the professionals throw generic advice my way, a one size fits all approach that they didn’t think I would have tried when my son’s were infants such as ‘A healthy sleep routine, a well balanced diet, offering lots of lovely sensory calm breaks, and using a timer for treat time”. It feels tedious and I try with every ounce of my body not to roll my eyes. I speak to myself “I bet they don’t live with any disability 24 hours a day, 7 days a week”.
So here I am, sounding bitter and depressed. Maybe I am – or maybe I just feel worn, tired, and lonely.
I ask you, as a parent -carer if you see a frazzled and exhausted looking Mother or Father with flushed cheeks aware of the glares being received, sweaty and struggling to bring calm to their dysregulated child in a Supermarket or play ground, Instead of assuming that her child is badly behaved and that the parent is doing a lousy job – spark up a conversation. You never know, it might make that person’s whole week – it may teach you a thing or two about the loneliness a parent carer can feel and it may even give them the interaction with another human being that their busy minds crave.
I love my beautiful, complex, brilliant children more than I could love anything else in the world. I will always support, nurture and embrace them for who they are. I will always fight their corner, I will always be proud of their every achievement and empathise with their challenges. But today………..today was a rough day. Today I just needed a break – and that’s OK.