The One Thing I Need My Child With Autism to Know


You will know today is your birthday because we will tell you “Happy Birthday!” You don’t know how to respond except to echo “Happy Birthday!” and you don’t know what birthdays mean, other than you get to sing a catchy tune with those words in it. All day yesterday, when I would tell you, “It’s your birthday tomorrow!” you responded by singing “Happy Birrrrthday, dear Carson!” because Carson is in your class and you went to his birthday party in September. You don’t know that we will have to train you to answer “How old are you?” with “6.”

You don’t know that I’m having a hard time believing you’re 6 — that I’m quickly realizing this is getting harder as you get older. You don’t know that one of my least favorite questions from strangers is, “How old is he?” because I could always tell they were baffled when I said “5” and now they will be even more perplexed when I say “6.”

You don’t know how to have a real conversation or tell me how your day was. You don’t know that when people say, “Oh, well my kids don’t tell me anything about their day either!” I want to remind them that their kid could if they needed to — that their kid can still tell them who they sat next to at lunch or what they did at recess or which kid farted in class (a regular conversation with your brother) or if someone was mean to them.

You don’t know that you’re the most fascinating person I have ever met.

You don’t know how to answer simple, everyday questions unless you’re properly trained how to answer them.

You don’t know that a lot of the things you do are considered “weird” by society’s standards. I have heard kids call you weird. You don’t know that it used to bother me, but it doesn’t anymore. I find your weirdness endearing. I happen to think society’s standards are a bit boring, and we need more people like you to balance it out.

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You don’t know that I wish, every day, that I could crawl into your brain to see what’s going on in there.

You don’t know that I feel pangs of guilty jealousy of other parents — parents who have kids developing “normally” by society’s standards, kids way ahead of the curve, kids who blow “average” out of the water, kids I’m around every single day who are a constant reminder of what you’re not doing yet.

You don’t know that I’m jealous of you. I’m jealous of the way you think, hear, see and feel.

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You don’t know the number of unexpected milestones you have reached over the last few years. You don’t know how many times I did a silent little happy jig about every tiny-to-everyone-else but huge-to-me accomplishment you achieved. (You also didn’t know that I do know how to jig and quite well.)

You don’t know how hard you had to work to learn simple tasks, like pointing and saying, “Hi,” how hard you had to work to learn how to answer simple questions like, “What’s your name?” and “Where do you live?”  Other kids may know more, but you definitely work your ass off.

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You don’t know that just because we don’t follow the exact routine we did yesterday (and the day before that and the day before that) it doesn’t mean your world is going to collapse.

You don’t know that we celebrate every new word, every new skill. You don’t know that when you blurted out “What the F*CK?” in preschool, in the correct context, we didn’t get mad. We said, “Cool! Unprompted language!” And you definitely don’t know that I cried when you first went pee on the toilet. (Most people don’t know that, because it’s kind of embarrassing. What better place to admit it than on the Interwebs?)  You don’t know, but some people do, that my husband saved your first poop-in-the-toilet for me to see because he knew I wouldn’t believe it unless I saw it. You don’t know it was so huge we thought about naming it and sending out announcements in the mail. (You also don’t know that many parents reading this will completely understand what I’m saying, and instead of being horrified or shocked, will just be like, “Oh. Yeah. We did that too.”)

You don’t know how to lie and you don’t know how to hide your feelings. That makes you the most authentic person I know.

You don’t know that this world is difficult to navigate, even for us “normals.” Sometimes I try to imagine navigating it as someone who sees it differently and without the words I want to say. People say things to me like, “I don’t know how you do it,” referring to this whole autism parenting thing. Well, they don’t know that I don’t know how you do it.

You don’t know the obstacles ahead of you. I have no doubt you will hurdle them, maybe not with ease and maybe not without heartache or pain, but you will hurdle them. You will move onto the next one, as if to say, “OK, what’s next?”

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You don’t know what “mean” means yet. You will, I’m sure of it. Kids will be mean to you. It’s possible they already are, but you wouldn’t necessarily pick up on it. You don’t know that it’s because they don’t understand you.  You don’t know that they’re missing out by not trying.

You don’t know when you’re not being included. You like playing with others but also seem completely content to be alone.

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You don’t know that, as you get older, your innocence and your vulnerability will become more enticing to the groups of kids whose self-esteem don’t measure up or whose parents never taught them the meaning of kindness and acceptance and that different is good.

You don’t know that if I ever find out anyone has hurt you or taken advantage of your vulnerability, I will go Mama Bear on their ass, and I might not be classy about it.

You don’t know that I’m crippled by fear about your future. You don’t know that I wish I could keep you in a protective bubble — a cruelty-resistant bubble that only lets the good in.

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You don’t know that when you cry, I want to cry, almost every time. Because, good God, it must be frustrating to not be able to communicate with the people around you.

You don’t know that I hope, with every ounce of my being, that there will always be one kid who stands up for you. One true friend. One kid who has your back. You don’t know that I found out at parent/teacher conferences last night that you have attached yourself to a sweet little girl and you hold her hand and you link your arm with hers and she is your helper and Oh my God, I almost starting bawling right there in front of your teachers. You don’t know that I wanted to ask, right then and there, if they could keep her with you all the way through school.

You don’t know what a cool brother you have. You don’t know that he will definitely always have your back.

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You don’t know how much your brother worried about you before you started Kindergarten this year — that he worried you wouldn’t stay quiet during lockdown drills. He worried you wouldn’t like lunch time very much. He worried you would get lost on the way to your classroom. He worried to the point of tears when we drove by the school one day over the summer.

You don’t know that I held back tears when your teacher told me your brother walks you to your classroom every morning.

You don’t know that I wonder if you will end up alone or with a companion. I wonder if you will find someone who loves you for you, who understands you and doesn’t look at your quirks as quirks necessarily but as really cool things they’ve never seen anyone else do before. They will see you as someone they want to be around always. You don’t know that I wonder if you’ll experience the joy of being a parent. If you’ll be able to pass on your kindness, your sense of humor, your ability to see, hear, feel,and think to another human being who is half you. You don’t know that I hope this happens for you, because I want more of you to be part of the world.

You don’t know that I’m so glad I get to be your mom — that sometimes I think, “Holy sh*t, this kid is cool. How did I get this lucky?”

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You don’t know that I’m tremendously proud of you. I want to brag about you quite often, but that type of bragging is uncommon in this world that’s different than yours. “My kid recites his class list at bed time!” is a different type of brag than, “My kid started to read!”  You don’t know how amazing you are, and how incredibly cool I think your brain is.

You don’t know you have autism.

You don’t know that some people are scared of autism.

You don’t know that I was scared of it four years ago when the pediatrician put her hand on my shoulder, said, “I think he has autism” and handed me a list of phone numbers. That I cried on the way home. That I Googled “autism” and then got more scared before remembering, “You moron, you’re not supposed to use Google for any sort of… um… anything.”

You don’t know that my biggest fear, aside from something happening to you or your brother, is dying.  Because no one knows you like I do.  There are people who love you and who will take care of you, but if I could just figure out a way to be immortal? Yeah. That would be greeaaaaat.

You don’t know that being your mom has quite literally changed me.

You don’t know that I wonder what it would be like if you were “normal.” And you don’t know how terribly I would miss you if you were.

You don’t know what a birthday really means. You don’t know how excited most kids are to announce to family and friends and complete strangers: “I’m 6 years old!”

There are so many things you don’t know that I wish you did.  Yet, so many things I’m thankful you don’t know.

I just want you to know you are loved.

This post originally appeared on Glass Half Full.

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