‘He will bite. He’ll take years to pick up skills others get right away. You’ll hear about Jolene trying to take Dolly Parton’s man 5,000 times.’: Special needs mom pens letter to future caregiver

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“Dear special needs caregiver,

A letter of intent 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 28, that life can be shortWe 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. But 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 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. 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 he 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 Parton’s hair out because you have heard about Jolene trying to take her man 5,000 times.  

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 its 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 rewarding 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. 


Jordy’s Mom” 

Courtesy of Kimberly

This story was submitted to Love What Matters by Kimberly. You can follow her and Jordy’s journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.

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