Community Magazine

My Average Desire for My Not-So-Average Child

By Matthewspuzzle @matthewspuzzle

The Impetus

The other day one of my friends, Trisha of MomDot, wrote a post about her very normally developing daughter being ‘average’. It was actually a very loving post about how her daughter tested right at the 50% level making her an average student. But Trisha goes on to say that after reflecting on average for a while she realized that being average can mean being amazing. A reader took offense at Trisha’s post because she thought Trisha must really think horribly of children on the spectrum who are anything but average, and this woman would give anything to have an ‘average’ child. Of course this came as a surprise to Trisha, because Trisha was neither saying anything bad about autistic children, nor was she complaining about her daughter being average. She was relishing an average child.

What We Lived

Since Matthew has progressed so far I don’t really live in that world of anger and fear anymore. That world where it is so painful to see other normal, happy, healthy children. But those feelings still linger, right below the surface. They are a strong current that still pulls my little ship of who I am all over this ocean of life and life with autism. I remember clearly crying after many birthday parties when I watched the other party guests playing, participating and enjoying the party, because Matthew just wasn’t the same as they were. A party might seem so trivial but what goes through a parents mind at that time isn’t the one party or one moment in time. No, what goes through the mind is the WHOLE of your child’s life. What it could have been, what is should have been, what it might be, and what you pray with all your heart it won’t be. Watching those children play and your own child off to the side flapping without any concept that the party is even happening, it brings so much forward. I remember thinking how much I had invested in his life before he was born. How much I believed I was promised with my new, beautiful baby. I remember how much I wanted for him, my dreams for what we would be together, this small family unit that would grow and love life together. I would see how hard he had to struggle just to do the simplest act, those things every other child did. My Mother-in-law told me about Matthew’s cousin, who is the same age as him, and how one day when my niece was less than a year old my Mother-in-law was holding her and my niece was noticing the flowers on my Mother-in-law’s shirt. My son couldn’t do that. It broke my heart. Such a simple thing, yet it was so, so profound and marked just how far behind he was. I felt every single loss for my son in that moment. It illuminated all the things he struggled with, right down to his very core, and it showed just how far he had to go to just be ‘average’.

Where We are Today

Those simple things would be dashed upon the rocks ever time we encountered ‘normal’ children. I know it was easier to stay at home, to not engage with other families and other children. And I would choose to do just that. I could hid at home and not see just how far behind he really was.  It just hurt too much, those constant reminders of what you didn’t have, what you may never have. As things changed and we helped Matthew improve, as we healed his body despite being told his autism wasn’t a medical condition, I changed too. I have grown so much in this time. I see things I never would have seen in my old life. I am more forgiving and more aware of the struggles of others. I am less likely to judge someones actions because I don’t know what current is swirling just below their surface. So I totally understand why that woman lashed out at Trisha. She was lashing out at her hurt, at her loss, at her child’s struggle, at what she perceived as a selfish desire for more than ‘average’. She would give her left arm, and probably her leg too, just to have her child be average. I know I would have, and I still would. Average is the miracle we are working so hard to achieve.

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