Autism for me has a perfect black page-boy haircut, it has rounded cheeks and long eyelashes. Autism for me bounces in and out of rooms, ripping and twirling paper.
Autism never sleeps through the night
Autism means that my child cannot tell me if her stomach hurts
Autism has made me fierce and difficult in the eyes of many school administrators.
Autism means I have been changing diapers for more than a decade
Autism means I run a small home-based pharmacy
Autism doesn’t make me sad anymore although some days it makes me tired
Autism means I will never have an empty nest
Autism means nothing scares me except the day when I can no longer care for my child
All over this country parents go to bed at night knowing that there is no system to support their children as they age. April is Autism Awareness month, I am never unaware.
I would ask that if you really wanted to be aware of what it was like to have a child with Autism, look at your children, your beautiful, talented, amazing children and imagine what it would be like if you knew that the world had no place for them. Look at your baby, your toddler, your tween, maybe even your adult and imagine for a moment that without you they couldn’t survive. That is what it’s really like to be aware of Autism.
8 thoughts on “Want to know what it’s really like…”
Looks like you are enlightening a lot of your readers with this post; me, you are touching my MOST RAW NERVE.
Should we start a place? Should we? What can we do????????
I try to write about this omnipresent terror and I never get there. Too scary. Thanks for having the courage – and for being so articulate…
Full Spectrum Mama
Katherine- I am inspired by your strength and moved by the depth of your humility and compassion. There are no words to describe the overwhelming challenges to parenting as well as coparenting. It sounds like the light and vulnerability you share with the rest of the world is highlighting the depth of your love for your husband, as well as your unconditional love for your daughter, this mutual reciprocity you all have for each other is the purpose of and for the meaning to what our lives are for:).
Katherine. Thank you for being the most humanist human and sharing with us Xxxooo Sam
This is the outline for a rich and beautiful story– when you have the time. Love to you all.
I really think you should do something more with this. Huffing ton Post? NY Times?
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powerful. beautiful. loving. enormously helpful in understanding what it is like to walk in another’s shoes. a must read for all parents.
WOW……amazing piece!!! Cant wait for your book:) How are you & the rest of the Sanfords? I am just starting to feel ok – lyme disease got me – it sucks! Its like a mix of adrenal problems (low energy), anti-fungal die off (spacey and feeling awful) and alzheimers (brain on shut down) all rolled into one. Miss you and your adorable kids. bye – Stacey
Incredibly powerful. My heart hurts after reading this. Hope you are well. Love to all!
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