The Hard Doesn’t Own Me

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We’re not supposed to complain. Special needs families, that is. The world calls you an ableist when you lament an ability or lack thereof.

I’ve never felt this child of mine was lacking.

He’s nothing short of amazing.

How could someone so funny and clever and filled with light be anything besides perfection? But, boy, is he hard.

Nearly seven years of eternal toddlerhood and a few words repeat themselves on the many pages of his complicated history.

Developmental delay, genetic disorder, autism, anxiety, adhd. These are the tricky pieces of the puzzle called my son and honestly, they confuse me.

He has several diagnoses.

He has a disability.

Which is which?

I’m unsure, left wondering where to lay blame or identify the problems that may actually have real solutions.

It’s a hamster wheel of exhaustion, this thing called being a special needs family.

When new babies arrive, parents lament colic and reflux and lack of sleep and the world supports them.

When you share the truth of being a special needs family, you’re shushed.

Last night, he was awake for hours. Around 3 am, I refused to hand over the iPad. Our whole family was wakened and though quiet, I knew they heard the yelling and crying and thrashing.

I reasoned and cuddled and chastised and held strong until my own anger grew and I knew enough to step away. I closed his bedroom door and sat in the hall, hanging on to the doorknob that he tugged from the other side.

After a few minutes, he was quiet. I slid back under the covers for a couple more hours of restless sleep…

Wondering how we got here.

Wondering what to do.

Wondering how we can possibly survive.

I share these dark moments from the wee hours so that the hard doesn’t suffocate.

For the parent who wonders if they’re all alone when the house is almost quiet.

For the sibling who struggles with competitive feelings of fierce love and annoyance.

For the friend who sees the brave smile but doesn’t really know.

Acknowledging the hard means it doesn’t own me.

I want a life steered by joy and fueled by love. An imperfectly perfect existence that is arduous and wonderful and exasperating and inspiring- all at the same time.

He’s that special.

Written by, Adrian H. Wood, PhD

I am a rural Eastern NC mother of four, one with extra special needs. Past preschool teacher, nanny, children’s ski instructor, early interventionist, college professor, early childhood researcher, wife and full time mama. In writing after a twenty year hiatus, I offer personal glimpses where satire meets truth, faith meets irony, despair meets joy and this educated debutante escapes the laundry and finds true meaning in graceful transparency. You can follow Adrian’s story at Tales of an Educated Debutante.

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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