Isolation Is a Special Needs Parent’s Mean Girl
A few months ago, the folks over at The Caregivers Space asked me to co-host a bi-monthly special needs support group at their site. The post below explains why such support groups are so needed in our community.
Isolation whispers the same words in the ear of every special needs parent she finds.
“I’m your best friend,” she says as she cozies up to them in the dark hours of the night.
“You don’t need anyone but me,” she says.
“No one else cares about you,” she confides.
She shakes her head. “They don’t want to hear your story.”
“No one understands you,” she confirms.
“Your friends are too busy with their own kids.” She raises an eyebrow.
“They don’t have time to help you, so don’t ask.”
“If you say anything about how hard life is, they’ll say you’re a whiner,” she confides.
“They’ll say you should put on your big girl panties and be thankful your child is alive.”
Sleep-deprived, emotionally raw, spiritually depleted, and heartbroken special needs parents believe every word this self-proclaimed best friend says.
But we shouldn’t. Because in reality isolation–every special needs parents’ closest companion–isn’t our best friend.
Isolation is the ultimate mean girl.
How do I know? I know because isolation was the mean girl in my life for far too many years.
She was the mean girl during the nearly 3 weeks we spent with our newborn son in a NICU over 700 miles from home.
She was the mean girl when we brought our baby home to the tiny town where we lived, and she convinced me not to ask friends for help because, you know, they were busy with their families.
She was the mean girl for the next 4 years while our son endured countless medical procedures, tests, and surgeries until his esophagus began to function correctly, and we were too sleep-deprived for my husband and I to think straight and give her marching orders.
She was the mean girl when we moved to a different town. She told me to quit mentioning our son’s health history after someone poo-pooed me for being protective of our precocious toddler who looked perfectly healthy but still had significant health issues.
She was meanest of all when our young adult son’s diagnosis with PTSD caused by early medical trauma didn’t sit well with people, and they avoided our company.
But finally, I had my fill of isolation.
I kicked the mean girl out of my life by sharing our family’s special needs story in articles and here on my blog, www.DifferentDream.com. By writing books that offer support and resources to parents of kids with special needs. By joining Facebook groups for parents of kids with the same birth anomaly our son had.
And do you know what? Life is good without the mean girl keeping me to herself. Life is really, really good without isolation building walls between me and other parents who are walking the same path. Parents who understand the grief and the joys of raising kids with special needs.
But my heart hurts for parents still trapped by isolation. Raising kids with special needs is the most demanding and satisfying and holy work we will ever do. It’s work done best without negativity mucking things up. Which means we’ve got to band together and kick out the mean girls in out lives. Will you join me?
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By Jolene
Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon.
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Oh yes, I’ve been there and done that! Thanks for sharing at the linkup!
Thank you for sharing such a personal glimpse inside a mama’s heart. <3
THIS IS SO RIGHT ON! It’s creepy, personifying isolation like that because she really is a bully. Oh girl, this needs sharing. To every woman.