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Monday, August 22, 2011

Tired of ASD.

The last few days have been tough. I'm noticing a fade in my resilience. Feeling worn down by the inescapable requirements of a child who has special needs and also demands relentless attention. Unlike many children on the spectrum who are happy to engage in solitary play Harri is a sensory seeker. He has worked out that people are useful to this end, and the most effective way to get immediate attention is by destructive means. Have I reinforced this behaviour by reacting when he slams doors, smashes glasses and plates, pulls plants out of the garden, swings pictures on walls, pulls piles of books off book shelves, draws on walls, constantly turns the oven on, tips all his puzzles onto the floor and so on? You bet I have. It is difficult not to react to these behaviours. It's also hard to maintain a philosophical approach when attempts to ignore, as you are instructed, fail.

My most peaceful daily moments are when Harri is engaged by his therapists. Of course this still requires me as the audience. Observing his sessions in order to follow through at home. Consistency and generalisation are key to progress after all. Then there's the constant negotiation in the shops, in the car, dropping off and picking up his sister at school. Chasing him, never being able to take my eyes off him because he runs, constantly having to be aware. The hyper vigilance is exhausting.

There are some evenings I watch the clock, counting the minutes down til his bedtime. Then I can forget Autism for a couple of hours. Kind of. There are some who claim that parents should not make Autism about them, because it is really about the child and their lived experience, and I have some sympathy for that position. But raising Harri has impacted my emotional and physical well being. There is some residual post traumatic stress left over from his screaming baby days. I bet I'm not alone in that.

But for now I'm tired. Tired of being woken through the night by his nocturnal shenanigans. I'm also tired of being anxious about my child. Of worrying about his future. Of feeling guilty because my patience with him is wearing thin. Of allowing myself thoughts of self pity. And resentment of those who are audacious enough to judge me without knowing anything of raising a child like Harri.

These feelings, as they always do, will pass soon enough. In the meantime I'll fester in the ASD doldrums.


  1. ((()))) All absolutely understandable and anyone who says they aren't hasn't been there and perhaps ought to consider how they feel when someone tells them how they should feel. Or not argue they have an abundance of empathy. :-) Of course, parents are as likely to do this as self-advocates.

    I hope they pass soon, these doldrums.

  2. I wish I didn't know what you mean but I do. There is nothing worse than lack of sleep, a needy special needs child and to top it all off a crowd of judgey-mc judgeson's.

    Hang in there lady, I'm thinking of you.

  3. Hi, new here.

    My son is also a sensory seeker. Ages 1-3 were the absolute hardest. Now that he is 6, it's gotten a little better. He still is relentless with demands of us playing with him and entertaining him. It's not easy, and I wonder if he will ever be able to entertain himself for 10 minutes at a time.

    Hang in there!

  4. Thanks Kim and Lizbeth, support from parents who have been round this ol block more time than I means a lot.

    Flannery (love that name) thanks for stopping in and saying hello. I really appreciate knowing it has become easier. I need some light at the end of the tunnel, and you have provided it.

  5. Hi Sharon,
    As I have mentioned before to you, my grandson seems so much like your Harri. In fact your stories about Harri demanding your constant attention for interaction or sensory seeking have stopped me quering the diagnosis as after all so many children on the spectrum appear the opposite. Flannery, your story also reflects the behaviour of my busy soon to be 5 yrs old grandson. And yes, I agree as I remember that the two and three yr age group as being the most hair-raising! Sharon, you have every right to be tired and exhausted. It's those glorious heart lifting moments such as when Harri eagerly rushed off to play with the boys that revive your spirit, spuring you onwards to join your son again on his adventure.

  6. :\

    Harri is obviously a bright boy and I just really think you have such a bright future ahead of y'all. He's so young now that I just feel that as he gets older and progresses in therapy he will find more functional ways to meet his seeking needs.

    Please take care of yourself. I REALLY, REALLY get that such a thing is easier said than done, but I hope you can catch a nap or a good book or something every once in a while while he's in a therapy session.

  7. I just wanted to send my support XX

  8. Thanks tracey, nice to find another aussie blogger.

    Sunshine I think he is quite bright which is a blessing and ads to the challenges in some other ways. You know I would not swap him for the world, just wish some days I could hop off the world and have a rest :)) I think the challenge for all of us is to negotiate the complexity of normal human relationships on top of our very interesting children. Mmm I sense another blog post.

  9. Shazza - you are a trooper and an amazing mum!

  10. Thanks teairene. Right back at you.