18 May 2017

Living With Very Challenging Behaviour



Three years ago my daughter was undiagnosed.


Pre-school 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" what the, who, why, Bleurgh. 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 rigmarole 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 of 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 behavior. 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, Id 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 apprehend. 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 behavior has a negative effect on all of the family, her younger sister copies some of her mannerisms, and for her elder brother, its 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 its 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 behavior 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 behavior 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 any one out there struggling with a child who has very challenging behavior 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 behavior 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 behavior it will only make you stressed and unhappy. Ask yourself DOES IT REALLY MATTER. if it doesn’t let it go as princess Elsa would say.
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4 comments:

  1. Jodie,
    Thanks for taking the time to share your story. It has personal and professional resonances for me currently and your positive message is valued and appreciated.
    Daniel

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    1. Thanks for reading and commenting Daniel. I hope it helps.

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  2. Hi Jodie. We have very similar experiences. My daughter is 9 years old and has PDA. While my son is 7 and worships the ground she walks on. He too has learnt to mimic her behaviours so often our home life would appear completely insane to an outsider. I long for the restful nights or weekends my colleagues speak about. However that isn't the hand we've been given. I'm sure our children will contribute something amazing to the world as they see things in a completely different ways. So we focus on just helping them to become happy and capable beings. All the best on this challenging journey and thank you for sharing your story.

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  3. If it helps...at 11 with time, lots and lots and lots of patience and love, and creating an enabling environment, this is my PDA daughter...https://frugalfam.wordpress.com/2017/05/20/my-job-is-done/

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