Dear Future Caregiver...
Why a Letter of Intent is Necessary.
Dear Readers,
I sat on a parent panel a while back with fellow parents of children with disabilities. One of the dads shared that he worries about everything for his nonverbal son but recently he can’t stop thinking about the little things, the day-to-things, that his son needs to be happy.
“If something happens to me tomorrow, how will the people who care for him know how he likes his eggs?”
(For us it would be pancakes, not eggs.)
That right there is why parents need to write a letter of intent for their children. A letter of intent is a written document that will tell someone everything they need to know about an individual if something happens to their parents. It’s not a legal document but more of a guidebook.
It will most likely be sad for you to write this letter, but you must get past that. One day you could be gone, and someone will need to take care of your child, who may not be able to communicate their wants and needs. A letter of intent does not have a required length, but most are typically 5–15 pages when they are thoughtfully completed. Some families create shorter versions (2–5 pages), while more detailed letters can be 20+ pages, especially for individuals with complex medical, behavioral, communication, or support 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 how they like their pancakes, their favorite toys, the special blankets they need to go to sleep. The things that make our children happy. Our dreams and wishes and hopes for them too.
Here is my letter of intent for Cooper. I cried more tears than I thought possible while I wrote this, but I did it. I did it for him.
Dear Future Caregiver:
If you are reading this, then something happened to Jamie and me. And you have stepped into the circle as ringleader. Let me tell you this, our family is a lot. But, wonderful too.
Cooper is my complicated guy. You know that. But he is also so lovely and so precious. Please, be patient with him. Please make a huge deal at Christmas. Please kiss and hug him, even if it feels weird, because one of my biggest fears is that he won’t feel loved after I am gone.
Ok, here goes. The big stuff.
He likes 20 chicken nuggets for lunch in the microwave not the air fryer. Always give him fruit with every meal, either strawberries or apple sauce. (In the cup not the pouch.) He likes a lot of ketchup too.
He cannot open his Capri Sun juice yet. Also, make sure he drinks water. He will try and put his milk into a sippy cup. That is not allowed. He is too old.
He loves Lucky Charms Marshmallows but will eat the whole bag in one sitting. I recommend hiding them.
When he touches your face to show you something…please listen. Please stop what you are doing and give him your full attention. If he touches your face, or arm, it’s important.
When he lets you into his world, whether it’s to show you a train or waddle like a penguin, you must gasp and clap and cheer. You must act like it’s the most amazing train or penguin waddle you have ever seen.
Celebrate all his successes as 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. He always wants 20 presents. Please get him 20 presents.
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.
When he says DDDD it can be Dad, Dora, or doughnut. Show him pictures and use your hands and ask him to point to one hand for yes and the other for no.
He likes to take a bath when he isn’t feeling well. But he can shower too. It takes a lot of motivating to get him into the shower. He can’t wash his hair yet so you will need to reach your arm in to scrub it. Please, give him dignity at home and in the community. He deserves to be clean and cared for.
Brush his teeth twice a day. He is terrified of the dentist.
He is afraid of anything hot and oddly will try and touch said hot thing. He will turn the heat off in the car in the winter, touch the burner on the stove, and even a campfire. Please watch him closely.
Check his body every single day for bruises, bumps, chafes, etc. He will not tell you if he’s hurt.
When you bring him to get his haircut, bring an extra shirt or he will be going home topless.
He wants to go to California to see the whales. If I haven’t taken him yet, please take him. Please. He wants to go so badly.
Push him. Motivate him. Reward him. Don’t give up on him.
When he covers his ears it’s not because it’s too loud…he’s excited.
Hold his hand. He hates sleeping alone and will always choose the floor over his bed. I don’t know why. But it makes him happy.
Please don’t put too much pressure on his siblings. They are not us and they need to experience life. But please show them the value that Cooper brings to their lives and encourage a relationship.
I’m scared he will wait for me in the window. And say my name a hundred times a day. I am his person and the thought of him not having me hurts so much. But I am gone, and he is still here navigating this world without me. Please, be patient with him. Show him videos of me and photos too.
Lastly, put his happiness above all else. I don’t care about school or a job if it isn’t the best thing for him. Please, focus on his happiness.
Thank you for this. I know it’s going to be hard but trust me when I tell you he is a gift. You get a front row seat in his secret world. And you also earned yourself a free pass to heaven. I’ll be saving a seat for you. Thank you for loving him. Thank you for being me when I am gone.
Kate
Once your letter is complete, add it to a binder with your child’s important information, along with the school information, teachers, IEP, medication, pharmacy, insurance cards, phone numbers, therapists, doctors, lawyers, etc. It’s important that you are not the only person who has access to your child’s critical information. Place the binder in a place where it can be found in case of emergency. If something happens to you, your spouse or whoever steps in will need this information. Also, remember to update the binder. This is not a one and done project.
Thoughts on this post? Leave a comment.
Love,
Kate
Independence and Autism: Goal Setting
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Such a thoughtful, beautiful gift. An essential document, I and I think many would not think of. Thank you for sharing. A window seat to Cooper’s beautiful world. Safe, loved and happy. The goal for all parents and caregivers. Cooper and a lot of kids and adults just need these things in their own unique way. Kate, you and Cooper are a light to so many. Thank you for the view.
That is the most beautiful letter I have ever read. I know it isn't meant for that but you can feel your love through the whole letter. Please know that you have gotten your point across clear in that letter, Cooper's happiness comes before anything, and should. Thank you for sharing your most inner feelings. You go momma!💜💜