Why I'm Going to Keep Talking to My Son, Even When He Doesn't Respond

He remembers the paths we walked last year along the beach and across the cliff-top fields toward the seal rookery. I let him lead. We never get lost.

Each day, he speeds down the beach, twirling two rubber snakes in his hands. I stop trying to keep up but instead hold back to see how far he will really get before he notices I’m not with him. He goes and goes and goes. Do I need to run? No, now he stops. He finds me with his eyes, far back along the beach. He turns back. He never comes all the way to me but just enough so that we are close, walking on together again in the same direction.

I spy a tiny speck of red and black crawling up the sand, and I pick it up to show him. He labels it quickly – ladybug – apparently unimpressed, and moves on.

While he’s close, I point out the dolphins who have arrived again just offshore, their dorsal fins cresting the waves in twos and threes every few yards. I can’t tell if he looks out long enough to see them.

Two rubber snakes spin over every surface along the beach, the road and back at our oceanside apartment.

He declines to come near enough to the surf to see the huge crab claw washed ashore, looking unnatural, as if someone on a dinner cruise tossed the carcass overboard after dipping the meat in melted butter.

My child – who swam nonstop in the freezing water every year before this – won’t go near the waves this time. As we saw before his first surfing experience last summer, he’s uncharacteristically hesitant and unsure at the water’s edge. He still loves to run on the beach, chase seagulls, walk and walk and walk – but he won’t get his feet wet.


I reassure him that no one will force him – he can return to the water whenever he’s ready. Although I don’t know why he’s had a change of heart, I hope he will love to swim in the ocean again in time. He says nothing until after our trip when we are back home, looking at photos. Then, a song emerges quietly: People swimming in the water, people swimming in the water… shark coming in the water, shark coming in the water…

My son can’t always find the words at the right time, and when the language does come, it is often coded, masked, singular. In order to hear him, I have to take the time to listen. He is speaking to me, in his way.

This break gave me time to practice this listening, to slow down and just be with my son, follow his lead and see where he takes me. It helped me notice what I am often missing in our busy, hurried life – that he is throwing me little sparkling clues to what he is thinking.

Within his daily babble – streaming scenes from his movies or books or games – I begin to hear small words that don’t fit in the script but align perfectly to the situation at hand.  When my mother joins us one morning, I hear the word “grandpa” sneak into his rambling soundscape, and I guess he is wondering where my father is.  With his question acknowledged, he is visibly happy to have been heard. This pattern repeats in other situations – I start to listen more closely to everything we believed was only “verbal stimming” before. Is his awareness and connection stronger this week, or am I just now slowing down enough to hear it?

On the beach, I catch sight of a seal bobbing in the waves just beyond where the boogie boarders float. He disappears and reemerges several times before the swimmers notice he is there. When they finally see him, their attention is newly focused, their experience made brighter, more memorable.  All they can do is watch and wait, let him choose to be near them – if they try to approach or chase after him, he’d be gone.

Each time I hear my child express what’s on his mind – in clips of song or a re-engineered phrase – I catch a fleeting glimpse of all that is just below the surface. In my eagerness, I tend to jump at it too soon, too forcefully, and the silence returns. But if I stay still, listen – float – his words appear.

I returned from vacation recharged to cultivate the patience I need to support my son’s still-emerging voice and to encourage his trust in me as a communication partner. As much as I yearn to know what my son is thinking right now, to have a conversation with him, to ensure that he will be safe and understood when he is away from me, none of these skills come quickly.

It is hard and treacherous work to find the words, and it may take years for him to know the rewards of shared communication. I am finally beginning to understand that just because his voice is not fully here yet doesn’t mean it will never come. If I can just slow down to listen, I can catch glimpses right now.

I will walk the beach with him, following his lead. I will point out what I see, despite his lack of response, hoping he’s soaking in the language he can retrieve later. When he’s ready to look back, I will be here, believing that he understands and desires to know more even if he can’t yet form the questions. I will wait and watch for the creative ways he is communicating – now or in the hours or days later. I will offer what he needs to build his voice: more patience, more time, more assurances that someone will hear him.


This post originally appeared on Stay Quirky, My Friends.

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My Son Taught Me How To Do the Holiday Season the Right Way

10365603_1401779626713682_4642857913708854351_o (1) It’s November; the ghouls and goblins are safely tucked away in storage containers, and for the next two months the sights and sounds of Christmas will be imposed upon us everywhere we go. Black Friday advertisements and Thanksgiving Day sales will be encouraging us to take time away from our families and instead spend it in stores spending money.

I’m not a Grinch or a Scrooge. I love the holiday season, but admittedly, I’ve become hardened to the commercial aspects of the holidays and a little cynical about all the hoopla.

I have many fond memories of lovely Christmas mornings at my grandparent’s home. We had our family traditions of donuts in the morning and some sort of Jello salad at the dinner table. We’d get together with my aunt and uncle and their three girls, and it was all very nice.

I have only a few memories of Christmas mornings with my biological parents. One of them involves calling my grandparents at some ungodly hour to come over so we could start our paper ripping rampage. I remember getting a hat and muff and an Easy-Bake oven.

Another Christmas memory involves being 7 years old and left alone with my brother, who was 6. Left alone while my mother went to spend Christmas with her new boyfriend (who would someday become my stepfather) and his family. We were left alone with a few unwrapped gifts and no food in the fridge and told to stay in the house. I vaguely remember a teenage neighbor coming over to check on us, and I have some recollection of trying to make a pan of brownies only to find that the oven didn’t work and the brownies remained a paste of brown goo. I don’t remember if we followed the orders given to us, if we remained in the house, if we ever had anything to eat that day or if anyone tried to make our Christmas special in any kind of way.

Of course, I knew, when I grew up to have children, all would be perfect. The holidays would be a blissful portrait that would put Norman Rockwell paintings to shame. It would be all about buying the perfect gifts, making the perfect meal and having the perfect day, because that would lead to perfect memories of a perfect life and perfect parents.

Well, we all know that no one and nothing is perfect. So to have those lofty goals was unrealistic and unattainable for anyone — especially when autism and Ring 22 syndrome was thrown into the mix.

For so many years, I found myself wandering aimlessly through the toy aisles. Ultimately I’d end up in tears because I had no idea what to get my son and because even when he was 10, 12, 14 (and even now), I found myself in the toddler toy aisle rather than shopping for game systems or the latest teen craze.

I would purchase some things I thought he might like — typically a stack of videos, board books and some clothes. I wrapped each of the gifts, filled the stocking and went through the motions because it was what I thought was important. We encouraged him to sit with us and open gifts even though he didn’t want to, because I thought it was what was important. We dragged him to holiday gatherings making him sit still for hours because I thought it was important. When things didn’t go perfectly or when the perfect holiday expectations were not to be found, I was filled with disappointment and dread because I thought it was important.

None of that was important. The perfect gifts wrapped with bows, the perfect meal, the perfect tree… none of it mattered to Zach. Sure, we found some things he enjoyed to play with. Sure, he enjoys the holiday food and he always looks handsome in his new Christmas duds. But none of it truly matters to him. What means the most to Zach is having us all at home, taking him for car rides to see holiday lights, favorite holiday movies and snacks, extra time to snuggle in the mornings and extra time with the people who mean the most to him and care about him.

Wow. My nonverbal son with autism and Ring 22 syndrome has had it right all along! The materialistic aspects, the stress to shop and bake and cook and wrap and make everything perfect is not only silly, it’s unnecessary and it’s not what’s most important.

I’m not saying we won’t follow our typical traditions, that I won’t shop or wrap or bake special cookies; I just will not let myself stress and strive for the perfect holiday extravaganza. I will take Zach’s lead; if he’s not up to travel on Thanksgiving or Christmas, I will have Plan B in my back pocket. It isn’t always easy, but after many years I have finally learned my lesson… caring about what matters to my kids and my husband and even myself is what is important.

I suppose in retrospect we did some of this with the best of intentions. We wanted the holidays to be fun and festive and perfect for our daughter, too. She deserved that and that was important. Our girl had to gain maturity and patience at a very early age, and I have no doubt that at the top of her Christmas list for many years was that somehow her brother could talk with her. I hope no matter how untypical and imperfect our holidays have sometimes been and will continue to be that she still has special and fond memories of our holidays together.

DISCLAIMER. Santa, if you are reading this… if my boy came up to me and said, “X-box” or picked out something he wanted, I would be the first one in line at the store.

Read more from Michelle Rice on The Mighty:
What This Mustard-Colored House and My Son Have In Common

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Why, Sometimes, Autism Is All About Happiness

boy smiling in the car Sometimes the autism life is about happiness.

That’s probably a weird thing to say given the challenges that all of us families face and the challenges my son, Kreed, faces in particular.

Last Monday he went in for a sleep study, and it was found that he stops breathing at different times during the night — one more thing this child has to battle. I almost cried on the way home, envisioning this new journey he’s embarking on and all the other journeys he’s been on that are difficult enough.

And then I was watching him watch “Toy Story” for the 34,976th time. And seeing how much joy he was still getting out of Woody and Buzz and how happy he was to watch them. Let’s face it, Kreed will be with us for the rest of his life; we aren’t worried about independence outside of the home. With his medical issues and communication issues, his life is here at home. The independence hope ship sailed long ago. And that’s OK — who wouldn’t want those dimples around for life? He’s my righthand man and my forever wingman. This took surprisingly a lot of pressure off things — I know I have many, many, many years to teach this child the things he needs to know. But right now… the only thing I want for him is to be happy. Period.

He’s in pain every day. He tells me. You can see it in his face. Take one look at his legs, with the blood pooling and toe curling — it’s miserable. He doesn’t understand what’s happening mom and son take selfie in the car to him or why he can barely walk or why he is utterly exhausted. Yet he still gives us those amazing dimples when he smiles. Because sometimes it’s just about being happy.

So our focus right now is on this kid’s happiness — what activities can we do throughout the day that will ease his pain and make him happy. Am I going to spend hours working on whatever skill or make him sit through a few hours of home school? Nope. Off to the park we go so I can watch his eyes light up when he’s swinging high. In the grand scheme of things, in Kreed’s life right now, he doesn’t need to be therapy-ed to death or taught things ad nauseam. Right now, he just needs to experience happiness. We have time — years in fact –to teach him math or reading or writing. I have no timetable. Kreed learns things as he needs to learn them. Before he began to lose motor function, he was learning to read measurements off boxes of sugar cookies and learning basic meal prep. But then disaster struck and his health took a turn for the worst. So would I rather him labor over learning measurements or just experience his happy smile when he sees I’m making him cookies? Pretty sure I want the smile. Because it hurts for him to stand for long periods of time; it hurts for him to walk. So right now, it’s about being happy.

We aren’t in an emergency stage anymore. Kreed is 16 years old. I have a pretty good idea about how I want the rest of his life to go. Everyone talks about acceptance and awareness etc. etc. etc. I don’t get into much because I don’t want to. We live with Kreed every day and try to make his life better. Period. There’s nothing we wouldn’t do to help him. So there’s plenty of acceptance and awareness to go around. We accept how this life will go. If I could take his pain away, I would in an instant. If I could make it so he could communicate more effectively, I would do it in an instant. But we don’t live in that world — we live in his world, which right now consists of pain. So yes, right now we’re all about making him happy.

We still work on his communication. That’s a skill that doesn’t need hours of therapy to accomplish or specific therapies or massive amounts of ABA. Why? Because his device is built into his life — it’s his voice and he uses it everywhere, even when he’s angry. And ABA is built into his life. Everything we do has a basis in the principles of ABA. I don’t talk about it because it’s just a way of life. It’s not the strict sh*t you see on videos or when people go off talking about it. It’s real, it’s applied behavior analysis for real life. It’s not hard to do if you understand the foundations and understand why it works and don’t listen to people who give it a bad name. Kreed still has to follow certain rules that have been set up for him throughout his whole life to help him regulate his behaviors. But hey, if he had a great day and he’s tired and in pain, I might allow him to eat bacon in his room… naked. Because seriously, it’s about being happy.

boy and dog Most of all, we’re consistent with Kreed. When I tell him an answer, that’s my answer. Period. And he knows it. I don’t ask Kreed to do anything that 1) I’m not willing to help him with or 2) I’m not willing to follow through on.

We’re always teaching Kreed, but sometimes the lessons he learns are about compassion, understanding, trust and… you guessed it… happiness. So when this boy tells me his legs hurt, I will then do everything in my power to make him feel better, no matter what. If he’s struggling to communicate, I will help him through it. If he’s having a meltdown because his body hurts, I don’t get angry. I help him through it with compassion and understanding. There’s a time and a place for me to be a hard-ass on him, and there’s a time and a place where he needs love more than anything. That time is now. Sometimes I may lose my cool, but for the most part he deserves for me to remain calm no matter what he’s doing. Because hey, right now it’s about being happy.

mom and son snuggling I talk to other families, especially when times get tough and anger flows more freely. They ask me why I stay so calm so much of the time. I tell them it’s because I don’t feel bad for me, I feel bad for him. He has to spend his life being underestimated, treated like he’s dumb because he doesn’t communicate well and is trapped inside his head. His body doesn’t move how it should and even simple motor movements can take a long time to do. He relies on other people 100 percent of the time for his food, shelter, clothing, etc. He can’t just hop in the car and go to the store and get his food. He has to ask permission for everything — even at 16 years old. So no, I don’t feel the least bit bad for myself or what I have to go through, I feel bad for the sh*t he has to deal with every day. So when I’m up for hours at night while he’s giggling or unable to fall asleep, I’m up to trying to help him settle in or make him more comfortable or I’m on Google beefing up my Google medical degree and figuring out what’s wrong with him. When I have to wipe his floor for the 2,459th time, I feel bad for him because it’s out of his control. When he’s angry because he wants food but it’s 11 p.m. and everywhere is closed, I feel bad for him that he has to ask for permission or wait for somebody to do it for him. I don’t get to feel bad because this kid has so much more to deal with than anyone else could possibly imagine. So, our life is about being happy.

I find moments to revel in. Like our new puppy, Finley, and how much she adores Kreed and wants to be with him. We don’t know why, but even Kreed seems like her — she didn’t give him a choice. I adore his face when we make foods he loves. I adore his face when he gets to go out to his favorite restaurant and see all the people there who love and adore him for just being Kreed. I love to take him places. I love to put on his favorite movies and watch him hop with glee. I love watching him figure out new things like a remote for his TV. When Kreed asks for things I try to honor it because I know how much it sucks to have to ask for everything. I do still have rules, and he can’t eat out every single day of his life. So instead I make sure he has fabulous food to eat at home when I have to tell him no. We set up a therapy and playroom just for him, and we’re constantly modifying his room and that room to however it would best suit him. Life can be all about Kreed, but why not? He sees and experiences this world on such a different level, and he finds joy in such simple things like Woody and Buzz for the 67895th time or when he finds out we’re making muffins today. Seriously! I think Kreed has more to teach us about life than we can ever try to teach him. My hope is that I teach him to communicate well enough to reduce his frustrations so he can tell the world how he feels and how damn funny and smart he is. So he can be happy.

Autism is probably the least worrisome thing about Kreed’s life. He has to fight hypothyroidism, seizures, an immune deficiency, a metabolic disorder, Addison’s disease, and now… sleep apnea. And he does it while still being able to smile like this:

And so to us, teaching Kreed boils down to life. Moment to moment. What does he need to learn in the moment? Before his sleep study, Kreed learned about electrodes and what they do and what he has to wear and why. Then his sleep study went great, and he didn’t fight the wires or anything. He learns to read things as he needs to. He learns math as he needs to. Most of all, he learns to communicate, all day, every day, in every moment. He has a voice. I truly believe that because Kreed feels like he has a voice, he’s happier. And now, he can tell me the things that make him happy, which is even better. It breaks my heart to see him in pain. It breaks my heart to know basically every day he’s in pain. It breaks my heart to watch him even try to walk, and I want to scream at every doctor and beg them to just help him so he’s back to the motor function he had six months ago.

boy making a silly face

Because I want this kid to be happy. He has to face so much in his life; it’s ridiculous. So I don’t get to be angry at him. I get to be angry at the hand life dealt him and make sure I’m a calm presence to him and understanding and compassionate. Sure, I still yell at him when needed — mostly if he’s biting his hand — nothing hurts my heart more than when he tries to hurt himself. And then I take him to a safe place and play his favorite music to calm him down, bring out his device and talk it through with him and come to a resolution. That’s what this is about now. Understanding, trust, compassion and communication. And having Kreed experience true happiness at every turn. I owe him that. This world owes him that.

So sometimes autism, medical issues or whatever… sometimes, it’s just about happiness.

Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty.

This post originally appeared on Kreed’s World.

When People Ask Why I Don't Leave My Son With Autism Home on Halloween

With Halloween fast approaching, I’m sure everyone has gotten their costumes sorted out, candy bought, pumpkins carved and houses decorated to delight even the ghostliest of visitors. Halloween has always been a favorite of mine and my husband’s. In fact, we love it more than Christmas. Before we had children, Halloween parties were always fun to attend. Getting to be someone else for an evening was rather fun.

When we started having children, our hopes to pass down our love of this holiday just added to our excitement. Cute costumes for babies and toddlers. The joy of seeing them get their first piece of candy in their bag. Getting grossed out over pumpkin guts.

But that all changed when we had our children with autism.

Autism is a funny thing. It’s unpredictable. You never know what is going to be a trigger. So with Halloween being one of those holiday where things don’t appear to be what they normally are, we had to brace ourselves for the possibility that the holiday we loved so much would be celebrated differently.

Most of the general population doesn’t understand why this would be a triggering holiday. From the costumes choices( or lack there of) to the inability to utter those famous words, “Trick or treat!” to not understanding the concept of why we don’t go directly into someone’s house even through they are giving out treats. People don’t understand the strobe lights or the fog machines put our sensory-sensitive children into a tailspin. I don’t expect them to fully get it. It’s just the way things are. But what I do expect is for people to have some understanding that there are little ghouls and ghosts out there trying to do their best at trick-or-treating.

1800379_10152904553619884_7545749421442900103_n Our son, who is nonverbal, has a hard time with this. I’ve been asked on many occasions why I didn’t leave him home. Well, the answer is simple. I will not shut him out of society because other people aren’t comfortable with his existence. He has every right to be with his brother and sister trick-or-treating. My response is always the same. He is just a little puzzle piece who says, “Boo” in his own little way.

Halloween and every holiday is for everyone. It doesn’t matter how they experience the world. They are entitled to partake in the festivities.

Please, if you do see a child who might be scared or overwhelmed, be a comfort to him or her. If they’re not wearing a costume, don’t get on their case about it. It could be that the costume is made from a material that bothers them. And if they don’t say, “Trick or treat,” it could be that they can’t. They would if they could. And for most of us parents who love this time of year, hearing that would be awesome. But a lot of us just want our children to be accepted.

Just remember that there are going to be children out there who say, “Boo!” or “Trick or treat” in their own way.

This post originally appeared on Spouse, Kids and Special Needs Aren’t Issued in a Seabag?

Read more from Andrea Thomason on The Mighty:
To Anyone Who Thinks My Children With Autism Don’t Realize When Their Dad Is Deployed
My Childhood Friend Taught Me a Valuable Lesson About Special Needs Parenting
When You Get Your Child’s Diagnosis, Remember This

Live Mighty. Like us on Facebook.

jack-o-lantern with text 'because halloween and autism can be scary'

Because Halloween and Autism Can Be Scary

Oh my goodness, Halloween is almost here.

And like every year, I’m anticipating it with a certain amount of excitement and a certain amount of anxiety. If you don’t have a child on the spectrum or with sensory processing issues, you may think my anxiety is about homemade costumes or sweet decorations.

If you do have a child like mine, you know exactly why.

Since my son was 3 years old, Halloween has been a difficult, at best, to an all out nightmare of a holiday for him (and therefore, us). It started with the Buzz Lightyear Costume in a size 3T and culminated in a meltdown over the mention of trick or treating last year.

It took me a long time to accept that this holiday needed to be a bit different for us (I can be very, very stubborn when it comes to family events. No one knows that better than my my poor son). For years I pressured and pushed and bought three different costumes and pleaded and cried and got angry and grew more and more afraid. Then, we got the diagnosis — particularly the part about sensory processing disorder and rigid thinking.

All of a sudden, I understood. I got it. It made sense.

Why is Halloween so difficult for my child?


My son doesn’t wear regular clothes well. He freaks out about tags, socks, the wrong kind of fleece, pants of any kind and just about any long sleeve shirt – because they are physically painful for him. Can you imagine how this costume felt?

young boy in a halloween costume

Every single year, he would try. Sweet boy. He wanted to celebrate with us. He wanted to get candy. He wanted to do what all the other kids were doing.

And then the costume.

Sometimes he would cry and complain. Most of the time, he would not know how to deal with the overload and start to get angry and meltdown.

Every year – except one.

boy in green alien halloween costume

This year, his morph suit was made of lycra (Hallelujah). He loved this thing. He would’ve worn it all day long, every day. A year later, in an occupational therapy gym, we discovered that lycra has a very soothing effect on some sensory overloaded systems… and my son has one of them. He sleeps in lycra sheets now. He has huge swaths of lycra that he asks us to bind him up in, really tight; Lycra is our friend around here.

It was our most memorable Halloween yet.


Halloween carnivals and trick-or-treating are just loud. I remember my little guy at 4, going up to a porch where other children were also waiting. As soon as all the kids yelled, “Trick or treat!“ he tensed up and covered his ears. We lasted about three houses, and then Halloween was over.

We used to try and meet up with other families, thinking it would be more fun for him to be with friends — except that more friends equals more noise and exactly the opposite of what he needed.

In addition, since my son is older now and better able to articulate what is bothering him, we have learned that the lighting has been uncomfortable for him all along. Apparently, the glow of the street lamps, the porch lights, the glow necklaces,and the jack-o-lanterns made for an extremely uncomfortable night for my son. His eyes have trouble processing light in darkness. He prefers bright light or no light. Anything in between is “annoying” according to him.

Social Cues

When do we ever ask our young children to walk up to a stranger’s house, ring the doorbell, take candy from them and interact socially (You are so cute. I love your costume. Oh what a scary little man you are!)?

For my rigid-thinking, rule-bound son, making the exception to our safety rules for one night a year was difficult. Couple that with having to actually interact with strangers — something he finds difficult in everyday circumstances where the lighting is comfortable and he is not expected to wear a scratchy polyester blend, head-to-toe outfit plus mask?

It is so clear to me now why Halloween was so awful for him.

The truth is, I wanted Halloween for me. I wanted to be the mom with the cute kids, happy and excited and racing to the next house for candy. I wanted the idea of Halloween. And I felt so sorry for myself that everyone else seemed to have children who loved it, while I was stuck at home managing a meltdown.

Looking back, I regret that being my focus. I regret turning something that was supposed to be fun into something that was painful and scary for my guy.

For the past two years, we have allowed him to participate as much or as little as he wants. This has meant no real costume and not really leaving the house. (Last year, he really, really wanted to go. He tried — twice –and then melted down. We ended up making homemade macaroni and cheese while my husband took his brother to treat-or-treat. My son was sad, but then his brother returned and shared all his candy, so all was well.)

He announced this year that he is “too old to dress up anyway,” and he wants to be the one handing out the candy as kids come to the door. I have no idea how it is going to go, with the doorbell ringing over and over and the loud children on our doorstep, but I am thrilled he is still willing to participate.

If you are momma headed out this week to Halloween celebrations with your little one, I wish you fun pictures and sweet moments filled with love and lots of candy.

And if it doesn’t go well?

I would encourage you to find what works. It might be a different tradition entirely, like making homemade caramel apples together or wrapping each other up in toilet paper and playing mummy.

Figure out what works for your little one and enjoy it.

Because one day, when they are “too old to dress up anyway,”  you will treasure your own little ritual. And you will miss it.

Happy Halloween, Momma. You got this.

jack-o-lantern with text 'because halloween and autism can be scary'

This post originally appeared on Not The Former Things.

Read more from Shawna Wingert on The Mighty:
A Letter to Jet Blue From the Mom of a Child With Autism
What I’ve Finally Realized About My Son’s Meltdowns

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.


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.


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.


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?”


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.


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.


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.


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?”


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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