To the Classmates Who Sign Up to Sit With My Son at Lunch

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My son Tate has autism. He’s 13 and in the seventh grade. Tate performs at a grade level far below his peers, academically and socially. I could and should write thank you notes often to each and every one of the teachers and staff involved in Tate’s individualized education. I definitely don’t say it enough. Today, however, I am going to say “Thank you” to the seventh grade class at Baldwin City Junior High School.

There are advantages to living in a small town sometimes. Tate will graduate with a class of approximately 100 students — he began kindergarten with about 20 of them. He had the same kids in his class through third grade. And living in a small town has produced opportunities for us that many families of a special needs child wouldn’t have. I knew all of Tate’s teachers and many of the parents and children. I was often in the classroom and able to educate Tate’s classmates about autism and Tate’s differences. I wanted full disclosure and often asked that the privacy policy be ignored. I talked openly about Tate’s disability and urged teachers to do the same.

From the beginning Tate’s been treated with respect and kindness. His classmates could see he needed help with many things, and there were always lots of willing helpers available. At the end of their first grade year, I thanked the children for being such good friends to Tate and asked them to promise me they would be friends all the way through high school — they’ve kept their promise thus far.

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For five years Tate has had a lunch buddy program so he can receive social instruction from an adult coach while surrounded by peers. In elementary school, students had a chance to sign up to be a part of it with their parents’ permission. There was always a waiting list and never a lack of enthusiasm for eating lunch with Tate. The program has evolved somewhat. Now, for part of the week, Tate sits at a table with peers and no adult. Other days he invites a friend or two to eat with him and a teacher at a smaller table so he can work on social skills. Rarely does a student ask for a rain check. If Tate calls, they answer!

So many children with special needs have to worry about bullies. So many children with special needs are lonely or forgotten. Tate has never been bullied — not even once that I am aware of — and many of his peers call him “friend,” although Tate doesn’t often reciprocate their kindnesses. Tate’s understanding of social skills and reciprocity is greatly lacking. His peers know it, and they accept it. They give, asking nothing in return. They include Tate whenever possible. They help him with tasks that are difficult for him. They teach him and encourage him. They make him feel like one of “the guys.” It doesn’t matter that he comes in last in all the races. I’ve heard them cheer as if he’s crossed the finish line in record time! It doesn’t matter if his presentation is short and simple compared to theirs; they’re excited to see Tate’s achievements even when they’re small.

They treat Tate like he’s a valued member of their class, an equal. For this, I thank them. I thank these students for being kind to Tate and for making his life easier. I thank these students for making my life easier. I don’t have to worry or wonder about Tate while he’s at school because he has friends who look out for him. Thank You Baldwin Bulldogs, class of 2020.

The Mighty is celebrating the people we don’t thank enough. If you’d like to participate, please submit a 400- to 800-word thank you note along with a photo and 1-2 sentence bio to [email protected].

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When My Son With Autism Locked Me Out of the House

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[Writer’s note: This is one of the first full essays I wrote about my kid. It’s an old story from ten years back now and is still one of my favorite memories.]

Standing on my back patio, I watch my 5-year-old son through the sliding glass door. He bounces around the kitchen on his large blue exercise ball, happily unaware that he’s just locked his mother out of the house.

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 He didn’t mean to lock me out. I stepped out — just for a moment — to throw something away, and I left the door open. After I went around the corner of the house, my son simply returned the door to its normal state: closed, with the latch pointed down. That’s how the handle always looks from the inside. Like many other autistic people, my child exhibits a keen awareness of his surroundings and tends to fix things he deems out of place. Lights on that should be off, books rearranged on shelves, doors that must be closed and latches returned to their down and locked positions.

“Unlock the door, hon,” I say, shaking the handle. He rolls his ball over to the door and presses his palms against the glass. He grins at me and sits back down on his ball. I instruct him: “Pull up,” and mime lifting the latch. He slides off the ball and copies my hand motions in the air, his fingers hovering inches from the handle.

“OPEN DOOR,” I demand, failing in my attempt to keep the growing worry out of my voice. My son laughs and repeats, “Open door!” But he doesn’t understand.

It all comes down to this — all the hours of behavioral and speech therapy, doctors’ appointments, IEP meetings and filing cabinets full of data sheets and treatment goals. If my son founders on a simple instruction to unlock the door, what does it matter if he knows his colors, his shapes, if he can recite the alphabet forwards and backwards? What does it matter if he expands his limited verbal ability to place “I want” before a request for juice or a cookie if he fails to comprehend my words when danger looms?

I run across the street to my neighbor’s house to call my sister-in-law, the only person with a spare key since my husband is out of town. Her phone goes to voicemail. I race back home, convinced my son is either upset by my absence or getting himself into some kind of trouble. I find him perfectly content in the air-conditioned house, bouncing on his ball near the kitchen table, taking bites of his lunch. Dear God, please don’t choke.

I go back to my neighbor’s house to call a locksmith, cursing myself for not hiding a key outside. The locksmith estimates his arrival at 20 minutes. How many things can go wrong in 20 minutes?

I return to my patio to wait where I can watch my kid behind glass, trying every so often to get him to let me in. From my isolated vantage point, the newly exposed hazards of my once-child-safe kitchen mock me. I begin to strategize. Which window will I break if he grabs that sharp knife off the counter or if he climbs up on the still-warm stove? Can I throw this metal patio chair hard enough to break the glass if he falls off that damned ball and cracks his head on the hard tile floor? Oblivious to the threats that surround him, my son laughs and bounces and taps on the glass between us.

Just as I reassure myself that at least I can keep an eye on him, my kid leaves the room. He runs into my bedroom where, of course, the window shades block my view. I cannot see him, but I hear him jumping on the bed, a favorite pastime that I instantly redefine as reckless. He yells, “Jumponthebed!”— one of the rare times he calls for me to play. I stand helpless to respond.

Then it happens. My son reappears, running into the kitchen and over to me at the door. He pulls on the handle, notices the latch and — without hesitation — flips it up and slides the door open. I’m stunned by the speed at which my dilemma evaporates. My kid, in turn, looks bewildered by his mother’s enthusiastic and borderline hysterical response. I cry and hug and sigh and he just smiles, as if to say: It’s about time, Mom, what were you doing outside for so long?

It is not always about ability. More often it’s about motivation. My child could easily learn how to unlock the door; he just needed a reason. People with autism spectrum disorders sometimes find it difficult to see the world from another’s perspective — my need to get inside, to get past that locked door, didn’t concern my son. Until it became his need.

Years later, this experience still shapes my interactions with my child. Of course, we moved the goal of teaching the instruction “unlock” to the top of the priority list (and yes, we now hide a spare key). But, the most important thing I can do is to give my son ample reason and motivation to use and strengthen his abilities; to discover what will entice him to open the doors that stand between us, waiting to be unlocked.

This post originally appeared on Stay Quirky, My Friends.

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To All the People We Underestimated Throughout Our Son's Autism Journey

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Since my son, TJ, was diagnosed with autism at age 2, our family has been immersed in paperwork, education plans and an entirely new language filled with terms and abbreviations that would make your head spin.

They certainly made ours.

And if it weren’t for our team leaders, we would have been lost.

The earliest team leaders laid the groundwork for us. When we were blindsided by the fact that our precious boy needed help, they held our hands and helped us out of the fog. They set up all the appointments for diagnosis. They tirelessly explained terms over and over again until they made sense. They set us up with the right people to give TJ the best chance at success.

Then we were passed to the preschool team and a new leader. She’d already been working with TJ, which made the transition seamless. That team gave TJ the most positive beginning to what it meant to go to school.

We’ve since been passed from team to team as TJ has grown. Each time we thought, “There’s no way our new team leader can replace our last one.”

Each time we were proven wrong.

So to every team leader we’ve had who made us feel like we were being heard, who worked out problems with a smile, who spent hours behind the scenes doing paperwork for our boy, we want to say a huge thank you.

To Liz, Laurie, Kristeen, Nicky, Sue, Donna, Alda and Shawn, we’re forever grateful.

Thank you for always being available and for responding to voice messages and emails so quickly.

Thank you for always saying, “There are no stupid questions.”

Thank you for reminding us that when TJ shows signs of regression, it usually means a leap forward is soon to come.

Thank you for your guidance through this crazy maze called autism.

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

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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.

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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.

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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

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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

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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.

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