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A Letter to My Daughter About Her Brother's Disability


Below is a letter I’ve written to my daughter. She’s the younger of our two kids. But I already see that in some situations, she takes the big sister role. I so badly want her to understand her brother’s autism. I know she notices that he gets more attention than she does… and I don’t think it will stop. Anyways, here it is.

Dear Lucy,

I’ve been thinking about writing this letter to you for about a year now. In that time, I’ve been noticing you noticing me… and it hasn’t always been positive. For the most part I think I’ve been doing a pretty good job as a parent and daddy. But I know I’m letting you down in a crucial area of your life, and I’m not sure that I can stop.

In the last couple of weeks, I’ve made you cry, and it breaks my heart because I know it will not be the last time I do so. I’ve ignored you, favored your brother, and I know it hurts your heart. I just want to let you know — I’m aware of this, and it hurts my heart too.

You’re the baby of our family, and as much as I want you to always be Daddy’s baby, I also want you to grow up quickly so you can gain a certain amount of understanding. I guess I want this for you so I don’t feel like I’m damaging you as much. You see, your older brother has autism, and I fear that it takes from you at times.

I started a nonprofit organization because of your brother, in hopes that we could help other families. It takes up a ton of my time. When you ask me to play while I’m working, I tell you, “No” way more than I tell you, “Yes.” I see that it breaks your heart. It breaks mine too.

The local news did a interview with me, and your brother was in it. You watched it and didn’t understand why you weren’t included. I didn’t have a good answer. I didn’t think you would understand. We shot a brand new “About Us” video, and you asked me, with tears in your eyes, “Why am I not in that video?” Once again, I didn’t have a good answer for you. You left the room, and then the tears hit my eyes.

Your brother has behavior therapy twice a week for two and a half hours a session and a socialization class once a week. You don’t understand why you don’t get to do these things. I try to explain it. I clearly don’t do a good job.

You’re developing at a rapid pace, and I’m in constant amazement at how easy you learn. It also serves as a constant reminder that your brother doesn’t have it this easy. I need to stop and celebrate you more. You deserve it.

You and your brother are playing on the same soccer team for the first time, and you’re holding your own with these older kids. Daddy is so proud of you! But, if I’m being honest, I catch myself watching your brother more than I watch you. And it’s not fair to you. I think it’s because I expect you to keep getting better. When I watch him, I’m hoping he gets better.

I’ve tried a couple of times to explain autism to you. I’m pretty sure you don’t fully understand. I’m not sure why I expect you to, when most people 10 times your age don’t get it. Someday you will… I just wish it was today.

Please know that Daddy is doing his best and also know that he wants to do better.

I love you way more than you know,

Dad

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A version of this post appeared on Firefighters vs. Autism.

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