You are Never Alone in the Struggles you Face
The 2023 More than a Caregiver Retreat at Moon Beach.
Dear friend I have Never Met,
Your child has just been diagnosed with autism. Maybe it came as a shock. Maybe not.
Maybe like me you already had an idea that something was going on. But you still felt the sting when the words were said out loud.
There are so many things I want to tell you. So many important things that I feel you should know.
But right now, if you were anything like I was 9 years ago, your head is spinning.
You are motivated and paralyzed at the same time. You want to do everything you can as fast as you can to help your son. But you are also hitting a lot of dead ends. It feels like hurry up and wait.
At least it did for me. You feel a bit like you failed your son. You feel scared and worried and angry and sad. You feel it all.
I won’t throw a bunch of stuff at you. Because either you won’t remember it or it will overwhelm you.
I’ll just tell you the really important things.
First, your child is exactly who they are supposed to be. He’s not different because he has a diagnosis. It wasn’t given to him by a doctor. She is the same amazing kid as she was before the label was given. Remember that.
Second, let your child show you the way. He will lead you off the path of ‘typical’ and into his magical world. Go with him. Sit. Listen. Learn. Just be there with him as he studies the sky and dances to music you cannot hear. Be his shield too. The world doesn’t understand autism yet. And while you may not yet either, you are now at the forefront of his journey. You will encounter unkindness and fear towards his differences. The first time it happens it will take your breath away. And know there is no way to ready yourself for it. But once it happens you will truly understand what advocacy means. And it will give you a strength like you’ve never encountered before. It is a gift to protect these tiny humans.
Third, believe in your child. Believe in him so much that people think you are crazy. And then believe in her more. You will be told all the things he will never do. The story of his future will be written for him and you. Rip it up mama. Rip it up and write a new story. Yes, the chapters may be different than every other child you know. His story will be unlike the others. And that’s okay. It will be just as beautiful and just as profound. No one else can write his future. Remember that. Believe in him.
And lastly, give yourself grace. A diagnosis of autism can feel scary and different. And it’s okay to say that. But different isn’t necessarily bad. It’s just…different. Go slowly and take it all in.
And love that little child.
Welcome to the club. Look for the helper’s mama. We are out here. Whether it’s other mothers like me or autistic adults who can teach us both.
Lean on those who get it. Ask questions and let us help when we can. You are not alone. Not ever.
Signed, a mama who has been there before.
Please consider sharing this with a parent of a newly diagnosed parent. It will help them. I promise.
Four days ago, I returned from a weekend with 110 mamas at Moon Beach in St. Germaine, Wisconsin.
We were there for the 2023 More Than a Caregiver Retreat hosted by The More Than Project and Finding Cooper’s Voice. Which is a lot of words to say me and my friend Amanda DeLuca.
Together we started a nonprofit. Our sole purpose is to help moms. Because we have been there. We are there. And we don’t ever want any other mom to feel as alone as isolated as we once were.
Many of us drove over four hours one way to get there. Some even took planes first.
We slept in tiny red cabins. We ate family style at the round dinner tables.
Our ages varied. So did many other parts of us. But we all had one thing in common.
Each of us has or had a child with a disability.
We are mothers. We are also caregivers.
This weekend was truly magical and although I live in a perpetual place of exhaustion, my cup is full.
I feel less alone.
We do this event every year and it fills up fast.
Join us next year. You may come alone but you will leave with friends.
To learn more about The More Than Project, follow us on Facebook.
Permission to Rest; The Validation We Need - An Evening with Kate Swenson
As a thank you to my subscribers, I am offering a FREE virtual evening with me on Friday, September 29th at 7pm via zoom.
I will share the presentation I just gave at the 2023 More Than a Caregiver Retreat called…
Permission to Rest; The Validation We Need.
This presentation will walk you through the permissions that I so desperately needed in the beginning and even the middle of my story.
I will shine a light on how we are failing caregivers buy focusing so much on the child. We need start looking at a disability like autism as a family diagnosis. In our case it’s so much more than a boy. It’s a mom, a dad, and siblings. We are failing caregivers. And the conversation needs to start now.
I will be your person. Your guide. I will be the person who grants you the validation that you need right now. I will remind you that you are not alone. That so many of us are out here walking the same path as you.
To register, first subscribe to my group, Coop’s Troops on Facebook. This group offers support, lots of live videos, a place to ask questions, and even in-person event opportunities. And you get to see this presentation for free! (Once you subscribe you will get the access code.)
Subscriber here: https://www.facebook.com/becomesupporter/findingcoopersvoice/
Once you are a subscriber, register for the event here: Permission to Rest: The Validation I Needed Tickets, Fri, Sep 29, 2023 at 7:00 PM | Eventbrite
*This event will be recorded for those you register but can’t make it live.
Thank you all for being here with me!
Please remember you are never alone in the struggles you face. I will leave you with this:
You have permission to rest. You are not responsible for fixing everything. You do not have to try and make everyone happy. For now, take time for you to feel and to heal. It’s time to replenish.
Love,
Kate