You don’t 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 “Six.”

You don’t know that I’m having a hard time believing you’re six.  That I’m quickly realizing that 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 “five” and that now they will be even more perplexed when I say “six.”

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, every-day 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 that are developing “normally” by society’s standards, kids that are way ahead of the curve, kids that 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 “Okay, 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 that 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 that stands up for you.  One true friend.  One kid that 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 OHMYGOD 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 lock-down 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 that 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 that 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 shit, 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 4 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 six 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.

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16 thoughts on “You don’t know.

  1. This is so beautiful. You have me in years. Not just thinking about my girl, but thinking about your Easton. I’ve always loved looking at your photos of him exploring and enjoying his world. I love the way he looks at things- things that would get lost on the rest of us. Architecture, angles, lights, etc. He doesn’t know that he has a team of supporters who love him and his mama from afar. So glad you’re a part of my life. Happy 6th birthday to that sweet little boy of yours!!

  2. Thank you for your post this morning. I recently discovered your blog through a re-post of “when he’s older and doesn’t have autism anymore” on Facebook. I live in Texas, I’m 42, I have a 5.5 year old son with autism and a 9 year old daughter, so my life does not match yours exactly, but I swear to God, I could have written this post myself. EVERY. SINGLE. WORD. I don’t want my boy to be six in March, he too has found a sweet little girl in his Kinder class who has attached herself to him, and when I think of growing old and not being here for him, I feel like I’m drowning. And that’s how his diagnosis has made me feel from day one – like I’m suffocating. Someone will find how I feel offensive (most likely someone who doesn’t have a child with autism) but I have a feeling you know exactly what I mean. My son is not suffocating me, the panic is. The unknown. Thank you again for your post. Every once in a while I realize I’m not alone, and it keeps me going.

  3. Annnnnnd….starting my work day off in tears! : ) This was so beautifully written, Anne. People probably tell you all the time how lucky he is to have you as a mama, but he is! And you are lucky to have him. He is adorable and amazing.

  4. Easton also does not know about the impact he has on his friends. He does not know the lessons he taught his friend Henry about friendship, communication, individual differences, tolerance, acceptance, patience and kindness. He does not know that there is another boy that is 6 now too that sees the world differently because he interacted with him every day. He does not know that he was a teacher to Henry by just being himself. Henry learned that people are different and different is good. Henry does not notice what his friends cannot do, rather he appreciates the way they can do things. Happy B
    irthday Easton – thank you!

  5. This is so beautifully written. There are so many points I can relate to, but again others that we don’t experience as a family. My greatest fear is dying too because I know my so. Better than anyone and worry about him coping in a world than can be cruel and heartless. At 12 my son has his first real friend and watching him be lonely and not invited to parties has hurt, but more us than him. I respect your honesty and courage and send my love to you all xxx

  6. I’m so glad that I found you. This post was so moving.. I’m still sniffling. I feel your pain. I feel your joy. You said everything I’ve been thinking but couldn’t put into words. Bravo. I look forward to reading more from you!

  7. Oh, you’ve brought tears to my eyes. Thank you for this post. You have struggles I don’t – but they are things I need, and want, to know about.

    I had a classmate in high school who is autistic. We were friendly – I don’t know where he is today. When I left for college, I didn’t know how to say goodbye. I tried to be kind, but his letters stopped so abruptly (his preferred communication was handwritten and often mailed, even if we did see one another at school), and I never heard anything of him again – no more responses to my letters. I wish I had known better what to say, and fifteen years later, I still pray that he didn’t feel abandoned.

    Please accept my apology on behalf of those who don’t know what to say. I wish I had made more of an effort to be friendly with J’s family – to ASK how better to talk to my friend, instead of stumbling along. I hope that if/when my kids meet classmates who relate to the world in a way that we don’t, that we are brave enough to learn new ways to relate to them.

  8. I just want to thank u for ur blog and ur words!! We arw currently in the process of having my 5 yr old son tested for autism. Your words have been my thoughts since we started noticing our Xander was not like other kids his age and were approached with him possibly having autism!!! This lil boy is one of two of the best things that have happened in my life!!! Again…thank u for putting this up because even tho i coudnt put into words…u have said it all!!!

  9. Everything you have written I have felt…. my son is only 3 and recently diagnosed with Autism – non verbal. I just wish I knew what he was thinking and feeling. His older sister is just like your oldest, so protective of him but also understands him more than anyone. Keep the writing going……. it truly resonates with us mums.

  10. I cried almost all the way through this post. I have two boys on the spectrum. The youngest (5) is fully Autistic, the older one will be seven in December and has Aspergers. Every year their school has a big celebration that they have had for the last 23 years. The gym teacher that started it still runs it. It is so incredibly moving… always. There are surprise guests and students returning after 20 years or so, people that they honor as a surprise for something wonderful that they have done. They have the children carry banners for each classroom, a torch is lit at the end of the opening ceremony. The children run laps and collect pledges for thenumber of laps they run. Last year they raised over $23,000 with just this one event. It is all very formal until theyget outside and every year I cry uncontrollably through most of it. I cry from the overwhelming pride in my children as they have gone from having to be held through the entire ceremony to eagerly watching every second of it. Their heads pop up above their classmates occasionally, but it is because they are excited about the entire thing. They went from having to wear headphones to be in the room with that many people, to singing and dancing every song as loud and proud as they could possibly be. My youngest can’t tell me how much he loves it, and although he isn’t smiling from ear to ear the entire time, he does smile and I see through his body language that there is no place he would rather be. Please don’t get me wrong, class time is still incredibly difficult for him, but that day that moment, he is so very happy. I loved your post. It touched my heart as it reflects my life so closely. I would miss them if they were ‘normal’… I have to admit I would not miss the screaming when words can’t come out or the tantrums of frustration, but my boys are incredible. And my brag of the week… My 5 year old not only learn to climb and jump the 3 foot fence at school, but yesterday after sneaking out the back door and with the help of a Shepard’ s hook scaled our 6 foot high privacy fence and rang the front doorbell. Twice. Today I will be fixing the back door alarm that tells me when it is opened. Sometime this week I will be looking for a child’s gym nearby with a climbing wall. 😉 Sorry this is so long. Just needed to share. Thank you for writing. Keep it up! !

  11. I want to thank you. For getting it. My daughter will be six soon and you expressed everything I feel every freaking birthday. It was simply beautiful how someday your son can read this. He might not “get” it but he will get the love that permeates your thoughts here. Simply awesome

  12. A friend of mine sent me a think to this blog post on Halloween. My nearly 5 yr old son was just diagnosed with autistic disorder at the end of this September. We had already suspected he was on the spectrum and it feels good to have a plan to help him and move forward. He is a twin (his twin isn’t on the spectrum and is “normal”) and has an older brother and sister. Your post had me in tears and relayed so many emotions I am going through. Thank you for sharing your journey. It has encouraged me.

  13. yeah Easton!! We miss you lots buddy!! I’m glad you have such a good friend at your new school!! ( her mom worked at your old school once! ) Love, Mrs. (Kristi) Jones

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