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Thursday, February 16, 2012

Of Folly and Fact and Fear. And Other 'F' Words.

A few days ago I noticed the re circulating of an opinion I wrote some time back about moving past grief after your child is diagnosed with autism. In it I ask parents to read Jim Sinclair's 'Don't Mourn for Us' article. And it's interesting timing because I am going though a particularly difficult phase with Harri at the moment. His aggression and destructiveness are almost unmanageable, and tonight after throwing his dinner around the kitchen and being sent to bed he added poo smearing to his repertoire.

As time marches on Harri grows more into his autism and his behaviours become increasingly challenging. It feels as if his defiance some days is impenetrable, and I fret about what that will mean for him as the future unfolds. All this brings home the sad realisation that I spoke prematurely when I wrote the piece about grief and moving on. That I spoke from a position of assumption and relative ease back then, rather than long term experience from the trenches, of the daily grind that I now find myself faced with. It seems some hubris was at play

 Let me repost this later opinion about Jim Sinclair's article for the benefit of any new readers who came via the re circulating of that early piece about the importance of not staying stuck in grief. We live and learn.


  1. So sorry to hear you're going through a hard time right now. I hope you've got supportive people around you who can give you a bit of time to yourself at some point (to avoid the burnout; so hard to come back from if it gets that far). If it helps at all, my experience with my son is these things go in cycles, and often the worse bit is followed by noticeable mental growth; like they're reorganising their inner world and go into turmoil for a bit. I know that doesn't necessarily help you right now though, just hang in there, and keep being the great mum you are.

    1. Thanks A&O, your kind words do offer some comfort.
      I have seen this kind of cycle before that does seem to correlate with some kind of growth spurt. We are tracking behaviour, taking data and working hard to understand the motivation. Some days he just seems so stubborn in his defiance that it actually intimidates me.
      Parents like yourself who are further down the path keep me certain that things will get better.

  2. If its any consolation I think the smart kids will rebel most, particularly when demands are stepping up as they feel it is their last chance to assert themselves. ABC charts really do help, to calm you and to help you see the pattern. Being on the same page as your partner is also crucial. Remember the scene in Jurassic Park where the ranger s explaining the behaviour of the velociraptors?
    Harri is testing the perimeter fencing: biting, kicking, playing with poo and generally working out what reaction each gets and how it helps him. If you keep the power on and the fence maintained, he will eventually get the message. Look at the level of demands in his world too. Is there anything that you are enforcing that doesn't really matter? Sometimes we all need to feel a bit of power over our lives, in order to be able to accept other things we can't change. Also have a chat about an occupational therapy assessment called a "Winnie Dunne" that could help identify if there is any ADD issues.
    This will pass, I promise xx

  3. LisaMaree you are so spot on with whats going on. At least that's my strong sense. As of today I have started using a token board all day long for all sorts of things, if he behaves great and if not then he gets a clear understanding of the consequences. I really do think this will help him comprehend better what we require of him, and also help us better understand him. He is smart and has a whole lot of spunk and attitude. I wouldn't want him any other way but boy it's hard some days. Behaviour is communication and we just need to work harder to understand what that is. OUr therapists have been awesome in helping give us the tools to better comprehend. And parents like yourself give me so much optimism.

  4. Hey, hope things improve soon. It really is a roller coaster ride. One minute you think things are going just fine as you are riding upwards slowly and gently and then out of the blue the roller coaster takes a sharp turn and can go downwards at a fast speed. It will eventually level out again and begin the gradual move upwards... At least that's my personal experience over the years.

    Also, kids do change as they get older and some really do try and stretch the boundaries. Just when you think things are under some sort of control, they will surprise you with something new to worry about.

    You are doing a great job. Hope things settle soon for you.

    1. Thanks Penny, yep you are right. He will level out again. He does go through these cycles often followed by a burst in language. Poor little fella must find this world very confusing.

  5. **hugs** For what it's worth I think you're an amazing person and even more amazing mother... I hope you catch an easier cycle soon.