Avery Grace

Avery Grace

Friday, April 24, 2009

Hardest Part

What's the hardest part about having a child with Autism?

Depending on which parent you pose this question too, your results would be as varied as our children themselves. For some, it's the inflexibility... the difficultly some children on the Spectrum have with changes in routine, trips out of the home, new environments etc. For others, it might be the challenges some children have with receptive or expressive language, or both. Or that your child doesn't smile at you very much, or laugh with you, or even look at you.

While there are "core deficits" that all or most children on the autism spectrum have, for the most part, they are as different as any two neuro-typical children would be. They are individuals with various strengths and weaknesses. My child, like yours or any other, is special and unique, quirky and fun. But she is also disordered and sick... but we choose to define her as angelic and amazing.

The hardest part for me is the unpredictability of it all, and the absolute unknown about both what caused her to regress into this condition, and what is yet to come for her development, health and overall capabilities. I hold a tremendous amount of hope for her, and am perhaps her biggest fan, but really, I have NO IDEA what lies ahead. It is something I have really had to learn to deal with, and even more, to be at peace with. For me, this has been the biggest challenge.

I can handle the stares. The dirty looks. The pity. The financial strain. The lack of language. The indifference. The meltdowns. The sadness.

and I am learning to handle the unknown. The unfairness of it all, and the resentment.

It's not that I am resigned. I am FULL of hope. But I am also learning to be okay with the "what if's." What if she can never talk? What if she can never live on her own? What if she stays locked inside herself? NONE of these things do I want for her... but I also want to move on. To be okay with who she is, and not spend her life wishing she was more. She IS so much more. She is my heart, and extension of my soul, and my every wish, hope and joy all wrapped up into a little, silly, happy, non-verbal 3 year old.

Will I spend our every last dollar ensuring we get her the best medical, therapeutic, and natural intervention available. You betcha.

Will I always wonder if I had made different choices would things be different. A little bit.

Will I worry about my needing to live forever to care for her. Every moment.

But more than all of this... Will I enjoy her for WHO she is, for what she CAN do, and for the grace, love, inspiration and hope she brings to my life every minute of everyday. Absolutely.

April is Autism Awareness Month. Be aware.

Please check out the team Avery's Aunt and Uncle created to raise money for Autism.


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