After writing on new years eve that I'd had a toy train thrown at my head, lots of very kind folk got in touch to offer their sympathy, and one mum's comment has been ringing in my ears since reading it. She said that I often describe her experiences from when her two kids were young. She said that she spent many years agonising over not having a life, and worrying about what would become of her children. By all accounts it sounds like they are now doing really well, aged 18 and 21. I was touched that she went to the trouble of sharing her story with me, and felt truly heartened to know they got the happy ending they deserved.
But it has also been a stark reminder that my family (more than likely) has many years ahead of THIS. Surviving and getting through each day, much like when you have a newborn baby in the house. Or when your toddler is outgrowing their nap and kicks off at every single thing that slightly annoys them. Or the term that follows your darling first born starting school, which is well known for transforming even the most angelic of angels into teeny monsters.
There is always a 'light at the end of the tunnel' with these situations. Us parents can be safe in the knowledge that 'this too shall pass'; and however unpleasant a phase, it is just that. A passing phase. This is what I'm having trouble coming to terms with about autism. It's not a passing phase, it's here to stay. It's all very well and good telling me to embrace it and look on the bright side, but there are more people to consider in my family equation than just my daughter and I.
Must. Stay. Positive!
Sometimes, after a run of tough days, my mind drifts off to dark places, and I start questioning whether brighter times really are around the corner.
When some are so fraught with tension and there is such little enjoyment, how can we possibly claim to be a happy family?
I wonder whether any relationship can come through the other side of autism victorious. All I keep hearing about is separation and divorce.
Must. Stay. Positive!
Sometimes the scars that autism leaves behind are visible. When the pinching has been so relentless we go to bed with patches of red raw, or bruised skin. When quick decisions made in pure anger actually draw blood. To big heads and small ones.
My biggest fears are for the invisible scars that we'll be left with. Memories of traumatic days when the screaming and hitting and pushing and throwing and name calling has reduced some or all of us to tears.
Avoid the triggers they say
Give them a wholesome clean diet full of organic real foods, ensuring you avoid gluten, dairy and refined sugars. Check.
If you are in a position to, remove the stress of mainstream school, and home educate or find them a suitable school better equipped to cater for their needs. Check.
Create a good bedtime routine (or sleep hygiene as the doctors say). Check.
Look inwards to eradicate your own (parental) bad habits. Check.
Limit screen time, and try not to let them use handheld devices such as mobile phones. Check.
Make sure they don't have too much excitement - but make sure they get plenty of fresh air and exercise every day. Check.
Plan every single frigging day to the enth degree just in case it's all too much and leads to sensory overload. Check!
The thing is, it's become apparent that her younger brother and sister are the big triggers for our 6yo daughter. It is heart breaking when our 3yo has sobbed herself to sleep because she's copped it all day. Or our 22mo wanders around muttering to himself "Poll-Poll mean".
Will these scars fade over time; that ultimate healer of raw wounds? Or will they be etched into our minds and souls forever; causing us pain long after the incidences that created them?
Must. Stay. Positive!
These invisible scars are a bit like my daughter's autism itself. Unnoticeable to most. Being 'high functioning' she has learnt to mask her true self when she has to, but it all comes out at home, where she feels safe to express her feelings.
We are trying so hard to find better ways to help her cope with the angry outbursts. To guide her to talk to us about her negative feelings, and encourage them to be channelled positively.
The sensible and sane part of my brain knows that progress is being made.
But it's so slow, and can feel like torture in the mean time.
Must. Stay. Positive!