Three years ago my daughter was undiagnosed.
The pre-school she attended had no concerns and neither did her teachers in year 1. We were in limbo discharged from all child services after a half hour assessment where the paediatrician deemed my child "an extreme version of normal"
It was incomprehensible that this professional "knowing" my concerns and family history, could describe my child in this way. What she really wanted to say was,
"Don't be silly, autistic? Her eye contact is good, she's just naughty and defiant, here take this referral for the Triple P parenting course"
And so it began..... The rigamarole that parents like you and I are all too often finding themselves slavery to. Fighting. Paperwork. Hoop jumping.
My daughter first hit me when she was 1 year old. I was buckling her into her car seat which was always problematic and as I bent over her I looked into her eyes and said something, what it was I can't remember, but in that second she slapped me so hard around the face that my head jolted backwards. She was strong. I remember saying to my mum in that moment that i would bet my life on it she was autistic. (Not because of the violence, we already had a couple of other people in the family diagnosed) it was just an instinct that struck me in that moment.
Her behaviour seemed to spiral out of control. When she started walking she would just approach her siblings or other members of the family and lash out for no apparent reason. We couldn't work out why she was hurting people. No one would listen to our concerns!
My daughter IS autistic, she DOES have sensory processing disorder AND Attention Deficit Hyperactivity Disorder.
She also displays very challenging behaviour. She is diagnosed as atypical autism, although I think she fits more at the PDA (pathological demand avoidance) part of the spectrum. PDA, is where the child or adult feels such intense anxiety that every demand is a challenge for them, so they avoid said demand to such an extreme that even every day "normal" demands are problematic.
From the time that she wakes up, until the moment she goes to bed, we have to face violent outbursts, endure endless hours of screaming at the top of her lungs, she is impulsive and has no control over her emotions or outbursts. At her very worst we endure being spat at, hit and called all kinds of names. She's very hurtful at times and it's extremely hard not to take it to heart. On a good day I can ignore and rise above the endless screaming and abusive comments and violence.
On a bad day, it's excruciating. I feel a pain in my heart so powerful I just want to cry. How can this little 7 year old be so hateful and unfeeling. Doesn't she love me? My heart literally gets ripped into a thousand pieces and yet, I'd forget it in an instant. I tell her I love her and I hold her until she's calm and quiet. Until her little bones have stopped trembling and then I forgive her! You see she doesn't mean to do all of these things, she doesn't mean to hurt me or anyone else physically or emotionally.
She simply cannot control it.
We have to parent her very differently to how other people parent and it goes against all traditional parenting styles. But if we didn't use the limited demand and only consequence the completely unacceptable things, then our lives would be turmoil. We do not accept violence, or spitting. Those two things are the only things we consequence for Lola in this house. And if you're reading this and you have a negative view on my parenting strategies that's ok, it's normal, I once thought like you, I didn't understand it either, it's very very difficult to comprehend. But if you had a child like mine, and nothing else in the world worked, what else do you have left to try?
Her challenging behaviour has a negative effect on all of the family, her younger sister copies some of her mannerisms, and for her elder brother, it's particularly unfair because he's so young he cannot comprehend why I have to deal with her In a more lenient way. It upsets him and to be honest I don't blame him, I would feel exactly the same if I was in his position. He's learning, and beginning to understand why we do things differently with her, but sometimes it's hard because he has his own issues that he has to contend with. He is a big brother, and a carer and a son, and a friend, but most importantly he is "him" and he struggles immensely with her challenging behaviour and always having to give in, or give up, or be quiet, or let her have it. He's a good boy and I'm so proud of him for the little young man he's grown into.
As a family we do the best we can to support each other throughout the particularly bad times. We encourage and praise the good behaviour, even the slightest things, we value and respect each other. And we love each other unconditionally. We will get through the hard times and we will help each other succeed because if we don't then we will just crumble as a family and that isn't an option.
My advice to anyone out there struggling with a child who has very challenging behaviour is to just take each day as it comes. Every day is a new day, you do not need to punish yourself for the things you did wrong, or could have gone better, you need to congratulate yourself for getting through it in the first place, and then spend some time reflecting on how you might do it differently next time. Negative thinking only has a negative impact on how you tolerate things in the future. Take a step back and look at what's really important for the family. Make some time for that other child where there won't be any interruptions. Make a list of what bad behaviour you need to tackle first, and stick with it. Be strong and let the little things go. You do not need to spend all of your waking hours picking up every bad habit, or behaviour it will only make you stressed and unhappy.
Ask yourself DOES IT REALLY MATTER.
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