A Letter of Intent

It's so much more than you think.

In the last week I have had two parents of teenagers on the spectrum tell me to write a letter of intent for my son.

Before this week I had never heard that term.

A letter of intent is a written document that will tell someone everything they need to know about Cooper if something happens to Jamie and me. It’s not a legal document but more of a guidebook.

At first, I was sad just thinking about it. But you have to get passed that part. You have to get past the sad thoughts because life happens and one day we could be gone. And someone will need to take care of our children. And in our world, Cooper can’t communicate his wants and needs.

Yes, I’m talking about doctors and phone numbers and medications and insurance information. But I’m also talking about the super important things like the foods he likes and his bedtime. And his quirks and struggles.

The things that make him happy. My dreams and wishes and hopes for him too.

I’ve been thinking about it all morning. What do I need someone to know about him...

When he touches your face to show you something...please listen. Please stop what you are doing and give him your full attention.

When he lets you into his world, whether it’s to show you a train or waddle like a penguin, you have to gasp and clap and cheer. You have to act like it’s the most amazing train or penguin waddle you have ever seen.

Celebrate all of his successes like they are the hugest deal. You don’t know this yet, but he works so hard just to be here, and he deserves all the celebrations.

He’s afraid of the birthday song. But he needs you to sing it to him. Even if he hides under the table, he loves it so much.

Send him mail. He loves mail.

If he gets frustrated or mad or even sad, he may hurt himself. Please don’t be scared. Hold his hands and love him through. Never leave him alone when he’s like this. There are people who will tell you to leave him in isolation. Don’t. Ever. Cooper’s greatest fear is to be alone. He needs you.

He can’t say a lot of words but always presume competence. He’s very, very smart. He will communicate with you in a dozen different ways. Please listen. Always listen.

Push him. Motivate him. Reward him.

When he covers his ears it’s not because it’s too loud...he’s excited.

Hold his hand.

He sleeps with a pile of treasures stacked up next to him. And 7 blankets. Yes, he can breathe.

Please fight for him. Demand a seat at every table on his behalf.

Adjust his waistband every time he uses the potty. It gets bunched. Wipe his face and his nose too. He can’t blow his nose, so you have to help him. Please do these things even when he’s a man. He deserves dignity and you need to demonstrate that and demand it from anyone who cares for him.

He hums a lot. I’m sorry. It’s so loud. But it means he is happy so remind yourself that when it’s too much.

He loves the train museum. You have to buy a ticket to go and all he wants to do is buy magazines and post cards. They know him there. Please bring him as often as you can and buy him whatever he wants. Trust me, it’s never more than $10. It’s worth it. Also, he rips up the magazines. It’s messy and loud but it makes him happy. Let him.

Mmmmm means milk. Wwww means water.

If he brings you the iPad he wants either ‘thomas the train on the rails coal’ or ‘Barney vacation.’ Took me years to learn that. And he can type some words so ask him the first letter. That will help.

Flapping means happy. Flapping is good.

His brother Sawyer is a huge resource so ask him any questions you may have. Sawyer is the best brother you will ever meet and can help but make sure he doesn’t do too much. He is a little boy first. A brother second.

Lastly, thank you. You are now in the world of special needs and it’s going to different than anything you’ve ever experienced before. Up is down and down is sideways. But it’s worth it. He is worth it. You are the lucky one now and while you may not realize that immediately...it’s true. Because you get to see the world through his eyes. You just have to listen and look.

Thank you!

Oh, and I’d skip haircuts for a while. You’ll need to ease into that one.

Write your letter moms and dads. I know it’s hard and it feels overwhelming and even scary.

Do it.

-Kate

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Guess what?!?

My nonprofit, The More Than Project and Finding Cooper’s Voice, are having a 5k, and 1.36 mile walk/run event on September 28 to raise money for The More Than Project and I am so excited to invite you to join us, either virtually or in-person!

We have three in-person opportunities in Cadiz, Ohio, Woodbury, Minnesota, and California, but are pleased to announce a virtual participation option as well!

Gather your family, friends, community members and join us for an inclusive event that helps The More Than Project continue to make a difference.

We are excited to announce Schwinn Bikes is partnering with us to help us give away adaptive bikes at each in-person location, as an extension of their mission statement of "All Riders Welcome".

Bikes will be given away to the top fundraising teams/ or individuals at each location.

So once registering feel free to create a Team and invite your friends and family members to join your team and fundraising efforts.

Race participants can register online now through September 2nd to be guaranteed a race shirt, but registration will remain open up until the walk date. (Shirts will be available to race participants within the contiguous US). Virtual registration is open to participants anywhere!

All in-person events will provide an opportunity for caregiver and family connections!

Sponsorship opportunities are available for businesses and individuals who would like to help us further the work and the mission of The More Than Project.

If you're registering, please share who you're walking for, and invite others to join in on this community event! Or just donate too!

We look forward to an amazing first ever More Than 5k!

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Have you seen my viral video? The one that really changed everything for me. It brough so much good into my life but also some bad too. But it also helped me to finally admit that I needed help. Share it with someone that you think it could help.