Sunday, 1 April 2012


Sometimes I feel like all we ever talk about, all we ever think about is Max's autism.
I am probably the most guilty. If he does or doesn't do something it's linked back to his autism. If there are new or specific circumstances within our families life, it is linked back to his autism. 'How will this affect him? We have to reschedule, Max is having a bad day. Will Max be able to handle moving again? Dinner isn't an option, Max can't eat that.'

    It's not that I am resentful of the fact that we spend most of our time strategizing, thinking, walking on egg shells. It is that I find myself wondering from time to time: How is this all really making him feel?
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    It's funny, I don't want him to feel different, yet I truly embrace different. If he were a typical child I would encourage him to strive for individuality and a true identity of his own. Not to say that because he is autistic I will be rooting for a sheep of mass conformity. It's just that to feel different because others have dubbed you so is monumentally dissimilar to discovering your own unique qualities that make you you.

    There have been many instances where I have wished that I could read his mind. That he could tell me loud and clear what he wanted. If I had even one ounce of direction from him I would feel much more at ease with the approaches we all take to help form Max's existence into that of a contented one.

    But I can't. I can't read minds. I can't be certain of what he wants, because he cannot tell me, not right now anyway. So I go on intuition and love. Two things that I consider to be my best weapons in my arsenal of mothering.

    Unfortunately, both instinct and love push me to want to reach out to my child. When he is tired, when he is sad, frustrated, angry, overstimulated, ignored, misunderstood, when he is anything other than utterly happy, I have an instinctual need that comes from deep within my core to hold him. To hug him, kiss him, sing to him, rock him. To look into his eyes and have him see the sincerity in my heart, hear my words when I tell him that I love him and that everything will be fine. He has me and I would protect him to the ends of the earth.

    This is a pipe dream. He does not want to be held or rocked, hugged or kissed. If I sing to him or attempt to touch him when he is upset I am only adding more sensory input to his overstimulated state. He will not look me in the eye. He does not seem to register the emotion in my voice or on my face.

I feel powerless.

    I have been told I am sad for my loss, not his. That this is how he wants it. This is what feels right for him. Does it though? How do you know? Do you have this ability to peer into the mind of another that I so long for?

    When I hold my three year old whilst in the peak of a complete meltdown, with his dilated pupils, a glaze over his eyes, tear streaked cheeks and a clenched jaw, I see pain. I see it as he struggles out of my grasp to recede to a solitary state. I see it in his limbs that are corded and stiff with tension, but mostly i see it in his soul. It peaks out from behind his eyes with so much anguish that my heart breaks. I feel his pain as if it were my own. He is my heart, he is my life. When he is broken, i too am broken.

    There are many things about Max's autism that make him the wonderful little man that he is and that I love so very deeply. There are also many things about Max's autism that make me sad; Probably a little angry too. Things that make his life harder, things that make his life lonelier.

    Yes, we spend a lot of time thinking and talking about Max's autism. I guess it's just our way of trying to do right by him. I just hope we are.


  1. I appreciate getting a peek into your daily life. Your days may be chaotic, but being able to read someone who is willing to be boldly honest about parenting is such a relief.
    I may not have shared the exact same experiences as you, but I can commiserate that at times in life people want to talk about one specific aspect of life and every conversation you start somehow circles back around to that specific aspect.

  2. Thanks so much for reading! It pleases me that honesty can be appreciated, otherwise how will any of us really know how to deal with anything if we all think we're the only ones.

  3. Everything you are feeling is normal for any Mom. You are a very strong lady who is dealing with what life has thrown her. I don't know any Mom who's life isn't all about the kids.

    Your writing is wonderful.