Dear Caregiver

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Dear caregiver, 

A letter of intent is something that was just recently brought to my attention as something that I need to leave for you.

Sure, my husband and I are young, but I’m learning after losing a dear friend at twenty-eight, that life can be short.  

We need to be prepared.

A letter of intent is honestly a term I hadn’t heard of before, but the meaning behind it haunts me every single night. How will you know what he needs if I can’t communicate that for him? Sure, he could choose between an apple or an orange or tell you what he wants to watch on his tablet.

However, he couldn’t tell you how he feels, or communicate real needs or wants. I’m going to try and do my best to explain those to you here. 

To the person who cares for my son after me…I want you to know that Jordy is the most amazing child you will ever meet.

I don’t say that with bias.

He has fought nothing but obstacles since birth. It has not been an easy path for him. He works and fights so hard every single day to live in a world that makes little to no sense to him and he makes gains that blow my mind.

He is capable.

Never forget that he is SO capable.

Some skills may take years to learn, others he will pick right up and it will blow you away. Please, I beg you, never stop trying. Always push him to reach his fullest potential. He is capable of so much, and deserves to have someone who believes so in his corner. 

This one is really hard to talk about. At times, he might be aggressive. The television may be too loud, he may be overstimulated by the amount of people in one room, he might be upset, or he might be excited.

Anxiety is a big factor in these behaviors.

There will come a time where he will hit. He might bite or pinch. It will only be towards those who he feels he is safest with. Please, keep him safe in these moments and help him through. Remain patient. He is not being aggressive intentionally. He’s struggling with his environment, and needs some help working through that. Be his guide. Offer him love. Give him grace. 

He loves music. Music is his best therapy. He can’t have a typical conversation, but can sing his heart out to every single lyric of every single song by The Beatles. He has the best taste, and he won’t hesitate to let you know what song he wants to listen to in the car. You may also have days where you want to pull Dolly Partons hair out because you have heard about Jolene trying to take her man 5,000 times. Lol! 

When he’s blending in with the crowd at the beginning of the school year, he’s anxious. The teachers or therapists will brag about how calm and quiet he is. Know then in those moments he’s unsure of himself and he needs extra love. Let him know he’s okay and that school is an amazing thing. Give him extra love in these times. 

He loves all things snacks, and they are his best motivator to work for. In times of despair, always up the ante to a strawberry milkshake. That is the grand prize for him. Only use it rarely though, or it loses it magical touch! 

Lay with him at night, until he falls asleep. Having another person beside him is his security blanket. Once he’s asleep, you can slip out of the room and he will sleep peacefully. Before you leave, kiss his forehead for me. Tell him you are so proud of the things he accomplished today. And that you know he will do great things the next. 

Caring for my son will be one of the most trying, yet amazing things you will ever do. But seeing the smile on his face when the concepts and skills finally click will be the most rewarding win you’ve ever experienced. 

I’ll end with this..

Love him.

Protect him always.

Advocate fiercely for him.

Give him grace.

Give yourself grace. 

Sincerely, Jordys Mom

Written by, Kimberly Hepner

My name is Kimberly. I’m a mama to two amazing boys, Jordy and Connor. I’m a wife of seven years to my wonderful husband, Peter. I advocate for and believe in a spectrum of possibilities. Jordy is on the autism spectrum and Connor is in early intervention for developmental delay and possible ASD. You can follow our journey and learn more about us on Instagram @kimberly.hepner31.

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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