The Last Time I Fought About Autism Online

Do not take judgement or criticism from people who have no idea the struggles you face.

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Good morning, all!

Happy back-to-school day in our world.

This morning I woke up to a comment on one of my posts, criticizing Cooper for having his iPad on a sleigh ride.

‘Cant Cooper leave his Ipad alone for a minute and enjoy the magical experience.’

I’m going to tell you that after an awful night of sleep it really rubbed me the wrong way.

I could feel the anger in my heart and frustration in my mind and churning in my stomach…yes, all of that.

See, when you share your life online, someone always has something to say. That’s a given. But when it comes to a mysterious diagnosis, and invisible one too, people adjacent to autism are so quick to judge.

And instead of asking a question in a curious way, a positive, ‘I want to learn more’ way, they come across mean.

I wrote a nice response. I explained that Cooper struggles from debilitating anxiety, especially when he’s at new places doing unknown activities.

Like riding a sleigh being pulled by two Clydesdales in the winter.

His iPad is often in his hand or near him. Sometimes it’s on, sometimes not. It plays music. Songs that bring him comfort. Shows that make him feel safe. He likes to hear his ‘friends’ talking and singing.

And as his mom, and I’ll speak for his dad, we are so happy that he has that comfort with him.

Now I know I probably won’t change that woman’s mind. Because, well, I feel like very few minds are changed online.

And that brings me to a story. Let me tell you about the last time I fought about autism online.

It was almost five years ago. Yup, five!

I was pregnant with my third child. We were in the process of moving to our ‘forever home.’ (Spoiler alert…it was not.)

Cooper didn’t sleep…ever. He started every single day at 3 am. He woke up multiple times throughout the night. He didn’t sit, not ever. And if he did, it was never for more than five minutes.

I was in a dark place as a mom and a wife and a person in general. I couldn’t help my son Cooper. Or at least it felt that way. I was fighting for medical care and services and supports and a program that would take him during the day.

I had a six-year-old who I felt like I was failing.

When I was at work, I felt like I should be with my kids and when I was with my kids, I was answering emails from my boss.

You get it. Mom guilt.

I had my two boys in the bathtub. I was washing hair and feet when I paused to check my phone and saw a comment on one of my posts saying I was a horrible mother.

The person used words like narcissist, martyr, and said I was the worst ‘autism’ mom ever.

And I let this person have it via a facebook comment back. I really went for it.

And in fight or flight mode I manically refreshed my notifications.

Our online spat went back and forth for a while.

As I made dinner. Helped Sawyer with homework. Kept Cooper safe. Put kids to bed.

And it got nasty.

She criticized how I was raising Cooper, failing him even. How I knew nothing of autism, blah, blah, blah.

Finally, I paused, my central nervous system in chaos, and checked this person’s profile. Did a little online research as they say.

The person I was commenting with, that labeled me the worst mom ever, was 16 years old.

She went to High School. She lived with her parents.

She was not a parent. She was not raising kids or paying bills or going to work every day. She wasn’t navigating the hard parts of marriage or special needs parenting.

Friends, I burst out laughing.

Like collapsed back in my chair, laughing.

I was fighting with a child.

And that is the last time I fought online about the autism parenting. In that moment, I said, I am done defending and arguing.

I am going to take all that manic chaos and turn it into being the best mom I can be. And I will tell you, it changed my life.

Do not take judgement or criticism from people who have no idea the struggles you face.

I can put my life, our life, our secret world, out there. But I cannot control what comes back to me. No matter how ‘perfect’ I am.

Thank you all for being here!

UPCOMING EVENTS

Forever Parents, An Autism Support Group

January 17 @ 6:00 pm - 7:30 pm

Please join us at Forever Parents, an Autism Support Group with Kate Swenson from Finding Coopers Voice. This is an in-person event in Woodbury, Minnesota for parents and caregivers of children (any age) with disabilities. This will be a safe place for caregivers to discuss their experiences and share resources. This group will also provide caregivers with information, training and tools, and assist caregivers in building a supportive network. And most importantly, gives parents and caregivers a place to meet one another and connect, share, ask, and learn.

Adults Only. All parents and caregivers welcome.

You must register by Saturday 1/14/23 with who is attending.  There is a limit of 30 slots available.

Any questions please reach out to Theresa Duffy at theduffy1028@gmail.com

Sign up here: https://www.signupgenius.com/go/30e0e4fa4ac22abfb6-forever2

Save the Date: 3rd Week in March.  Date is TBD.

Finding Joy in Caregiving, Charlotte, North Carolina

March 22 @ 6:30 pm - 7:30 pm

Join parent and advocate Kate Swenson on Wednesday, March 22, 2023 at 6:30 pm at Levine Jewish Community Center in Charlotte, NC, as she reflects back on her family’s journey through an autism diagnosis, early intervention, and transition to school services, and the emotional toll these processes can take on a family. In this presentation, she will discuss the transformation she made as not only a parent, but as a person, and the support that parents need from professionals, family members, and those within their community to help their family adjust to this new chapter of life.

SAVE THE DATE – Registration coming soon.

Mother’s Day Retreat and Conference 2023 in Pittsburgh

April 21 - April 23

I am excited to share that I will be the keynote speaker for Autism Caring Center’s Mother’s Day Retreat in April 2023 in Pittsburgh! More information to come!

Learn more: Mother’s Day Retreat (autismcaringcenter.com)

Mother’s Day in Minnesota – 2 Day Event!

April 29 @ 8:00 am - April 30 @ 5:00 pm

SAVE THE DATE!

Finding Cooper’s Voice and The More Than Project are excited to announce our second annual Mother’s Day in Minnesota. This two-day event is for mothers of children with any disability or special need. As primary caretakers, caregivers are at serious risk of burnout. Nineteen research studies have identified parents of children with disabilities to have an increased risk for depression (95%) and anxiety (90%). The divorce rate is over 85% for parents of children with a disability.

During this retreat, every moment is carefully curated to empower moms to combat these statistics all while relaxing, having fun, finding community, and equipping them to return home with the tools to best care for their child.

I have more books to ship out! If you’d like a copy of Forever Boy signed by all six of us, click the link below!