Having a Tribe Can Make All the Difference

“Build your tribe. Find your village. You’re going to need them.”

I remember looking up at our pediatrician through tears as she said those words to me shortly after delivering my son’s Autism diagnosis.

She explained how dynamic and changing our lives would be and that we would need to find others who understood.

The gravity of those words didn’t quite register with me at first. I mean, I had friends. I had family. What did she mean I needed others?

At first, I was lost in my grief for an uncomplicated childhood that would suddenly be filled with therapies and appointments.

My heart ached for knowing that this world is not kind to those who are viewed as “different.” It killed me to know that I wouldn’t be able to protect my son for that.

It was clear early on that there were just some people in our lives that were there for a season. They fell away as things changed.

I don’t fault them– the friends who couldn’t understand enough to offer compassion or the family who couldn’t understand why we couldn’t attend every gathering.

We encountered those who wanted to deny the existence of my son’s disorder. They just didn’t see it themselves so it couldn’t be so. Our parenting was questioned by those who felt we failed our son by just accepting his diagnosis.

I had someone offer me the “cure” to Autism which I believe fell somewhere between essential oils and drinking bleach. When I politely declined, she told me it was my fault my son was damaged and I should want to fix him.

All of these instances fell so early on in our diagnosis when it was still so raw. In those first few months following diagnosis as we tried to line up therapies, enroll in early intervention, and shore up funding, I needed a life preserver so badly and it just seemed no one wanted to throw it to me.

I wanted to talk about it. But, it felt like no one wanted to take on those hard conversations.

No one wanted to hear my 3 am worries spoken out loud. I felt as though everyone expected me to just smile and carry the weight on my shoulders without question.

I was sitting alone in the dark.

I was sitting alone with my feelings and my grief.

I knew no one who was in the same boat as us.

But, then suddenly, I wasn’t sitting in the dark alone anymore. My tribe assembled and showed themselves.

I have an amazing family. They help with therapy appointments. They love unconditionally and they wrap us in love.

I have some pretty fantastic friends who love and accept my family as their own. My fellow Mama Bears are always there to listen on the hard days and offer no judgment. They love us hard and we love them right back.

Finding your tribe and having support can make all the difference.

Autism moved into our lives on a beautiful April day and never left. It will be a lifelong companion. It will always be part of our dynamic.

But, I’m not alone.

My family is not alone.

Our tribe is a good one.

“When you can’t look on the bright side, I will sit with you in the dark.” – Alice in Wonderland

Written by, Marisa McLeod

Marisa McLeod lives in Waterville, Ohio, with her husband, four kids, and two dogs. She is a Golden Girls, Disney, and organizational junkie. She can usually be found sipping coffee (or wine), watching terrible reality television, or Pinterest-dreaming her next adventure. You can keep up with her on Facebook or on Instagram. In addition to her own blog, How Many Monkeys Are Jumping On The Bed, she is a contributing writer for Toledo Moms.

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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, subscribe for exclusive videos, 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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