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 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 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.
Jodie,
ReplyDeleteThanks 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
Thanks for reading and commenting Daniel. I hope it helps.
DeleteHi 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.
ReplyDeleteHi K - Thanks so much for your kind words, Yes i long for those times too, a nice meal, or a day trip out. xx
DeleteIf 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/
ReplyDeleteThank you Tara, ill take a look xx
DeleteWow - our experience is almost identical, although our son wasn't diagnosed with ASD until 12 years old. He's bigger than I am now and that makes his outbursts even more difficult. He is currently unable to attend school, and very difficult to live with at home. But, we love him with all our hears and do our best each day to ensure he and his younger sister never doubt that love ❤️
ReplyDeleteI cant even begin to prepare myself for when she gets bigger than me, i'm only little haha x Thank you so much for reading and commenting
DeleteThis comment has been removed by the author.
ReplyDeleteLove and care goes long way. Often personality disorder get ignored and children end up facing many challenges as adult. Thanks for sharing your experince .
ReplyDelete