The words are powerful.
“I think they want us to give up,” she started. “A fellow autism mom said this the other day, and it stuck with me. She was responding to my venting about the difficulty and complications of getting services for our kids. Everything is a fight. Everything.
“For more than 20 years, I have had to fight for everything. Two amazing children, each with unique special needs. Incredibly smart kids deserving of anything and everything possible to make them productive, cared for and happy. And it’s God-damn exhausting. With every special service comes piles of paperwork and documentation, months of waiting. Hours spent on hold on the phone. Emails back and forth. Long conversations with government agencies, insurance companies, doctor’s offices, attorneys.
“It’s a full-time job. I know I could have — and probably should have — made a full-time job out of being my kids’ mom, diaper-changer, butt-wiper, hand-holder, snuggle-giver, advocate, driver, lawyer, defender, teacher, tutor, speech therapist, social coordinator, entertainer, caregiver, chef, banker, financial planner, documentation provider and proofreader. The truth is, if I made it a full-time job, I would have lost my mind a long time ago. Or, I should say, I would have completely lost my mind.”
***
Writers quickly recognize these paragraphs as the work of a professional. Stacie Sherman, senior editor for Bloomberg, is just that: One of the best in the profession.
Those with children on the spectrum – or children with any number of special challenges – recognize these graphs as the exhausted stream of consciousness that everyone in that position faces on a daily basis.
Sherman combined the two earlier this year in the release of her incredibly well-received book, “Broken Road: The Tangled and Twisted Musings of an Autism Mama.” (Buy it here)
Her personal tales from decades-long efforts to care and comfort Cameron, 24, and Brielle, 22, are chronicled in a blog-style book – one she had long been encouraged to write.
“My blog posts began as a form of therapy as I coped with the roller coaster of my life and emotions,” she said. “But it soon became something else. I received an incredible reaction from friends and family members as well as strangers who saw my posts on social media. Some of the readers had no idea what it was like to have a family member with autism. Others had autistic family members and appreciated my honesty and candor.
“You need to write a book,” I heard many times.
Buy it here
Stacie Sherman’s book, “Broken Road: The Tangled and Twisted Musings of an Autism Mama,” is available on Amazon – where it has received a 5-star review from 94% of its readers.
Her 244-page effort includes her thoughts from a 13-year period: May 12, 2011, through May 12, 2024. It is a diary of 85 entries, including “They Want Us to Give Up” – portions of which made the opening graphs of this article.
Sherman said they are more than just a look at her life from whichever cliché you choose: “The Good, Bad and Ugly” – “The Blood, Sweat and Tears.”
Simply put, they are snapshots of a life that takes an unfathomable amount of strength to lead.
Sherman said the blog format gave it the authenticity she desired.
For her, the most impactful blogs include:
All by Herself: She compares her daughter to a toddler in the restaurant bathroom, realizing the toddler was more advanced;
Grieving Time: A time when she was feeling really low and depressed and wrote a poem of her grief;
I Hope You Can Read This Someday: A birthday letter to her daughter;
The Missing Piece: An ode to my incredible husband and how I learned to depend on and trust him.
Of course, anyone who has lived the life of caring for someone with special needs knows the moments are never defined by a true start or finish. Rather, they are part of a road of twisted turns that can never be predicted.
Frustrations that never end.
Yes, as she wrote, it’s as if others want her to give up.
She won’t.
***
“I’m so tired,” she writes. “We’re all so tired. And the worst part — they’ve got us right where they want us. They want us to be tired. They want us to scream and cry, to give up, to say it’s not worth it, I don’t have the time for this. F.U. and your B.S., it takes too long, it’s too much paperwork, I don’t have two hours to sit on hold.
“But here’s where they’re wrong. Because as my fellow autism mom said, ‘They don’t know us. We’re not giving up. We may be tired; we may be fed up. But we’re not going anywhere. We’ll live without sleep. We’ll lose friends and family members because we’re so wrapped up in our own heads. Because they don’t understand that we’ve just spent three hours on hold and are just not up for small talk. That we’ve just spent an hour on the phone asking why our daughter keeps coming home with soiled underwear, or with her communications device uncharged. That today we just don’t feel like hearing how your child is driving you crazy because they can’t decide between a medical career or a year abroad, when my adult child can’t spell her name or dress herself.’”
Her emotions come out in raw form.
“Today, I’m not in the mood,” she writes. “So, I’m not going to answer the phone. I’m not going to go to that get together. I’m going to sit here and vent with my writing, feel a little sorry for myself, and F the world.
“And when I’m done, I’m not going to talk about it. I don’t want to talk about it. Don’t call me up and say I read your post and I’m here for you. I read your post and I love you. I read your post and if you need anything I’m there. I know all that. I’m good. I’m sorry I can’t talk about it today, or tomorrow, probably ever. I want to squash it down into the depths of my belly, put my sneakers on and go for a walk to clear my head.
“I have a battle to fight, and I can’t lose.”
