Why Autism Spectrum Disorder Can Make Your Heart Hurt

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Every mommy needs to laugh, even when there’s nothing to laugh about! And even when a mommy needs to cry, she can always find the strength and courage to carry on. That is this mommy’s motto and I believe every one of those words with a deeper and stronger conviction each time I type them. Certain mommee-truths make me laugh out loud, even when I have to reach deep to find the funny. There are those mommee-truths, however, that claw at my heart strings and bring me to tears.

The other day I watched my daughter play on the monkey bars after school with her peers. Inevitably there was an incident. I say ‘inevitably’ because no matter how hard I will my daughter’s autism to not interfere in her social interactions with others, it almost always does. I listened anxiously as one crying child recounted how my daughter, who was sitting atop the monkey bars, had placed her hand over this child’s as she had tried to swing through, preventing her from moving. Seconds later a tap on my shoulder alerted me to another crying child who was recounting the same information to her mother. In that moment my heart was aching – breaking in fact. The ‘truth’ is that sometimes autism makes my heart hurt.

I have said it before and I will say again that my daughter is beautiful in the way that matters most – on the inside. She is kind and compassionate with an infectious smile that lights up a room. Her feelings for her younger brother aside, there is not a mean bone in her body and wanting to intentionally hurt another child would never occur to her. And yet autism is always there; always her underlying current and interfering in her social interactions. My child has spent countless hours in countless therapy groups being taught what is socially acceptable and unacceptable and learning how to play – concepts that are inherent and come naturally for neuro-typical children. But the autism is ever-present. And so her impulse-control guides her, preventing her from recalling what the socially appropriate thing to do in a specific situation is. So she covers the hand of a child trying to cross the monkey bars and prevents them from swinging through. And what can I do but watch the scene unfold, saddened in the realization that this is my child’s life; a life that I would never have chosen for her.

Not too long ago I read a passage from the book 1001 Great Ideas for Teaching & Raising Children with Autism or Asperger’s by Ellen Notbohm and Veronica Zysk so profound that it completely changed the way I view my daughter’s behaviours. The authors said simply “Don’t ask why”. They said that in most instances a child with autism does not understand why they do the things they do. The behaviours may stem from sensory issues (i.e. it feels good to her) or there may be something about the situation that is reinforcing the behaviour. The pressure that the child feels to respond to the ‘why did you or didn’t you’ questions can cause them to make excuses or blame others. I know this. I KNOW THIS and yet I still stood there on the playground and asked my daughter why she would prevent the other children from swinging across the bars. She couldn’t tell me why. Of course she couldn’t! And so inevitably she became angry, she started to cry, and she started verbalizing random thoughts completely out of context. On the walk home I reflected on how badly I had handled the situation and what a disservice I had done to my daughter whose daily struggles I cannot even begin to comprehend. Although still not the right approach, I asked her what had fueled her actions. “My mind told me to do it,” she said. And so it is that sometimes autism makes my heart hurt.

This is but one of many incidents (although minor) that my daughter, and our family, has had to weather due to special needs. Does she enjoy it? Does our family enjoy it? The truth is NO. But I would walk through fire for my child and I will always be there to guide and help her, to raise awareness and understanding for the daily challenges that she faces and to advocate for her acceptance and inclusion.

Later that evening after my daughter had long forgotten about the day’s events, she asked if she could play at the park across the street from our home. Long after all of the other children had left the park and the street lights had come on, I watched my daughter swing peacefully back and forth across the monkey bars. They are her “thing” and it is in this place that she is strong and takes comfort.

So yes, sometimes autism makes my heart hurt. More times than not, however, there is no room for hurt. There is no room at all because my heart is filled with pride for, and bursting at the seams with love for, a beautiful little girl who calls me mom !

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