What I've Finally Realized About My Son's Meltdowns

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Some things are just tough to write about.

I want to write about them. I know I should.

But with some topics, I have trouble saying what I want to say.

So, bear with me on this one. I’m not sure how it will go. But I think it needs to be said:

Aggressive and violent meltdowns are awful (and that might be the biggest understatement I’ve written).

They are awful.

They are exhausting.

They are emotionally painful, for my son and for our entire family.

They are so scary, for my son and for our entire family.

They create chaos and destruction that takes days to recover from.

People get hurt. Sometimes physically hurt. Always hurt on the inside.

When my son’s meltdowns first escalated, I was beside myself. I was certain it was because I had spoiled him and now he was upping the ante to get what he wanted. Not only that, but everyone else thought that too.

So, we cracked down. We took things away. We grounded. We yelled. We freaked out and melted down right along side him.

And they just got worse.

They intensified and got more and more out of control.

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Before I go any further, I want to share a small but absolutely true list of the damage that was physically done in our home during this time frame (leading up to and immediately following diagnosis). I am posting this list because when we were living with daily meltdowns, I thought we were the only ones. I thought my son was the only one this bad. I would’ve cried tears of relief if another momma shared the literal mess her life had become at the hands of her child.

So I am sharing mine today:

  • Numerous holes in walls that needed to be patched and painted again and again.
  • A handheld video game device – thrown with force out of the back window of the car, as we drove down the road and he kicked and screamed. (I’m still so grateful that no one on the other side of the street was injured. It simply fell, was flattened by a few cars, and we were out $179.00.)
  • TV – gone, tipped over and smashed
  • iPad – destroyed, piece by piece.
  • Every single thing in his room – thrown about in a cyclone of hurt and rage and frustration, landing in a sad broken pile (see picture above).
  • Every poster, award and special thing hung on the wall, torn down.
  • Car windshield  – smashed, with a broom, in our garage.
  • Car window – smashed, with his feet, as I drove down the road.
  • His own body – purposefully battered and bruised.
  • My body – purposely battered and bruised.
  • His little brother – sometimes bruised, always completely terrified.

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Meltdowns are awful.

I hate them.

I hate that they take over his mind and body, and we all spin.

I hate that he feels such fear in the middle of them and such pain once they have passed.

I hate that once one begins, we can try to diffuse it, but sometimes, it just has to run its course.

I hate them.

They don’t happen as often, not by far. At one point, we had this level of meltdown at least every day and often two or three times a day. Now, it’s only every couple of months.

The progress is huge. We have all learned to breathe again and relax and find joy in the simple ability to function throughout the day.

And so now, when they come, we are almost surprised. It’s like a strange reminder, “Oh you’re still here? I thought you left.”

Yesterday, my son had a meltdown. His room was destroyed. He was incapable of logical, functional thought for a good two hours. My heart pounded, his brother grabbed his little dog and hid, and my son cried, “Momm-eeeeeeee, Momm-eeeee, Momm-eeeee,” as he rocked back and forth, over and over again. The anguish and lack of control was so clear.

All the same emotions come flooding back, and in the moment, I felt a familiar helplessness that breaks my momma heart into pieces.

And, then it was over.

A year later there is a big difference in how we react. We have learned so much, and have had a year’s worth of therapies and meds and books and websites and speaking with other families. We are more practiced, more experienced and more capable.

And, we know that we likely won’t have another one today, and tomorrow, and the next day. We can breathe. We can recover. We can clean up the mess and move on.

That’s the biggest change. When his meltdowns first escalated and became aggressive, we had no idea if they would ever lessen. In fact, we lived each day in anticipation and fear of the next meltdown.

No longer.

If you are a family dealing with this every day, I am so sorry. My heart hurts remembering how suffocating that feels. It can be so isolating – not leaving the house day after day because you never know if it’s going to be safe enough to drive somewhere. Or dropping your child off at school and then picking them up with a sense of panic, as you anticipate what will happen once you get home.

I wish someone had told me all of this. I wish someone would’ve said, “I totally understand. My son has destroyed things too. I’ve been physically harmed by one of the little people I love most in the world. I would gladly die for him, but it feels like there is nothing I can do to fix this.”

So I am saying it to you now.

You are not alone.

Meltdowns are like a dirty little secret that moms and dads and even doctors don’t really talk about. But that doesn’t mean they don’t happen.

You are not alone.

This post originally appeared on Not the Former Things.

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The Apology I Owe My Son With Autism

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Dear Kreed,

How many months have we stared at your sweet face begging you to tell us what’s wrong? How many days have we wiped away your tears when the pain and frustration is too much? How many years have gone by since you’ve been locked up inside? I stare at you in wonderment now. Communicating. Telling us your thoughts word by word, phrase by phrase.

I can remember laying in front of you begging for you to tell me what’s wrong. Begging you to let me help you. I’m sorry I didn’t know what was wrong. We had to decode your behavior and had less clues to work with than on “Medical Mysteries.” How we wished you could have some words, any words, some way to tell us.

Instead you told us through your anger, your fear and your sadness. You told us through the wounds on your hands, the bang of your head, the pounding of your feet and the tears you would cry. Your silence has been deafening. Your voice lost.

Here you are today, telling me you don’t feel well. Your head hurts. Telling me you’re sad when you remember things in the past. Telling me you’re excited when you do something fun. Turning to a peer and asking her if she’s seen the movies you like. Requesting anything and everything you want. Finally knowing some of your favorite songs. You’ve found your voice. Maybe not in the way we thought or used to want, but we hear you loud and clear now, buddy.

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No more silence. No more waiting to hear your thoughts. No more wondering if we will ever know what’s inside of you. You never have to go unheard again. We can hear your voice. And it’s sweet and sensitive and funny. Priceless.

I’m sorry for all the times we’ve failed you, talked about you in front of you like you weren’t there or ignored a communication attempt. I’m sorry it took so long to give you a voice. I’m sorry it took so long to give you a choice in everything. And I’m sorry I didn’t take your device everywhere sooner — you deserve to have a voice no matter where you are, not just when it’s convenient for me.

I’m sorry for not understanding sooner. I’m sorry so many people hurt you in your life and didn’t understand you. I’m sorry some people still don’t understand you and probably never will. I’m sorry for anyone who has ever treated you like you were less, and I’m sorry when I can’t protect you from the people who make you feel that way. I will always fight for you and fight for your voice.

I love hearing your thoughts and your voice. I’m sorry when I get mad and frustrated when you have trouble understanding why you can’t have everything. It’s been a long road to get to here. I will continue to walk beside you and help you and lead you anywhere you want to go.

I’m sorry for when I will let you down in the future or lose my cool, but I promise I will make it up to you and try harder. I promise to hear your voice no matter what, no matter where we are and no matter what we are doing. I promise I won’t let anyone silence you again. We hear you now and will never let that voice go silent again.

We love you for all you are and for who you are going to be. We love you through the silence, through the tears and pain and through your successes and happiness.

I hope at the end of all of this, you will know how far my love goes. Here’s to you, dear sweet Kreed, who has finally found your voice and it is beautiful.

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 in Kreed’s World.

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10 Things I'd Tell Myself About Our Autism Diagnosis If I Could Go Back in Time

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mom and son smiling at each other Recently a friend of mine asked me to lunch to get some advice about concerns regarding a family member’s child — concerns this child may be showing signs of autism. I gave this person as much advice as I could and went about my day. I left that lunch contemplating what would I tell myself if I could go back four years to shortly after my son was diagnosed.

I thought long and hard, and one of the first things I would tell myself is “Do not cut your hair! You will not look like Posh Spice! Don’t do it!” The second thing I’d probably say is, “Step away from the pie! You’re just going to gain a bunch of weight, which as you approach 40, will be incredibly hard to get off. And the constant pie eating isn’t going to make you feel any better anyway. Put the fork down. Now, before the lightning strikes the clock tower, and I have to get back in my DeLorean and travel back to 2014, I’ve got some real important sh*t to tell ya, so listen up!”

10 Things I’d Tell Myself

1. Stop blaming. It doesn’t matter how or what caused his autism. You’ve got more important things to focus on then the blame game. Above all else, don’t you dare, for one more second, blame yourself. It’s nothing you did, did not do, should’ve, would’ve or could’ve done. You are not the cause. All this mentality will do is drain you down to nothing but a shell of a resemblance of what might be left of a human being. Right now he needs you — all of you. He needs that precious energy, and so do you. He’s on the autism spectrum. Move on.

2. Quit spending countless hours on the internet chasing down that next new treatment/therapy in Timbuktu, which may or may not have worked in 2 percent of kids with autism. Go with your doctor’s recommendations. Listen to the professionals. But above all that, listen to your gut.

3. Pray. Pray a lot. Pray in the car. Pray in the store. Pray before you go into the store. Pray in the parking lot. The prayers don’t have to be an ode to Jesus. They can be as simple as “God, I need you! We need you. I can’t do this without you.” Short and sweet. Just pray. Prayer was, is, and always will be, in my opinion, the most powerful weapon in your arsenal.

4. Laugh. Learn to laugh quickly. Laugh a lot. Laugh at as much of it as you can. It sure beats the hell out of crying. And truth be told, crying won’t change a damn thing anyway. Laughter will be the second greatest weapon in your arsenal.

5. Quit waiting for it to get easier. It’s not going to. You’ll get stronger. You’ll even surprise yourself. You’re a badass. You just don’t know it yet.

6. Quit, quit, quit trying to fix him! He is not broken. Focus on helping him to evolve. Help him, teach him and work with him towards evolving into the person God created him to be. Accept that he (just like “typical” children in this sense) will be who he is. Not some ideal of a picture you had in mind. He is special. He is unique. He is one of a kind. He is who he is. He just needs a little (sometimes a lot) more help along the way.

7. Be patient. Be patient a lot. Be patient in the car. Be patient in the parking lot. Be patient in the store. Learn patience quickly. And I don’t mean just with him. Be patient with yourself, too. You’re not perfect, and you don’t need to have this all figured out. No one expects you too. And you know what else? No one else has it all figured out either! In the end, we’re all just winging it.

8. Avoid Autism Tunnel Vision. Do not make it all about autism all the time. Quit with the “If he didn’t have autism he would/wouldn’t do blah, blah, blah.” While sometimes that may be true, sometimes it’s not. Sometimes he’s naked because he’s a little boy. Sometimes he’s stinky because he’s a little boy. Sometimes he’s cranky because he’s a little boy. He’ll have some good days, and he’ll have some bad days. And sometimes that will have absolutely nothing to do with autism. Repeat after me: “He’s still a little boy.”

9. F*** those ridiculous spreadsheets of what he should be doing by what age his “typical” peers are doing at that age. I firmly believe beyond the diagnosis stage, this is a pointless piece of paper that does nothing but torture your mental wellbeing. Ignore them. Throw them in the trash. He will progress at his own rate — not when Timmy, Tommy, Jimmy or Johnny does. And he sure as hell won’t do it based on what some crap piece of paper says.

10. Get thicker skin. Ignore the stares, the silent glances and the looky-loos. People won’t always be kind or compassionate. Forget them. They’re the problem, not you and certainly not your son. You walk in like you own that store or restaurant, walk in like you both belong there. Because you both do.

11. Brace yourself for curveballs, like when someone says they have a list of 10, and it turns out to be a list of 13… There will be times when curveballs will happen — skills your son will acquire, then without cause or explanation, lose. There will be times you’ll think a certain less-than-desirable behavior is under control, and then — whammo! — it’s back with a vengeance. But you’ll learn this is all part of the ebb and flow of autism. He will progress, he will regress, he will progress again. The curveballs will happen, but you’ll learn to swerve.

12. Look back. I’ve read so many quotes, about not looking back — except in your case, you need to look back. And you need to look back regularly. Look back at how far he’s come and the progress he’s made — the progress you’ve both made. You’ll especially need this reminder when he’s in a meltdown that lasts 15 minutes, when you can look back and remember when they lasted for 45. You’ll especially need this reminder when he’s only eating five or six things, when you can look back and remember when he only ate one or two. You’ll especially need this reminder when he’s only saying 25-30 words and you can remember when he only said one. You’ll especially need this reminder on the days when you’re in a full-blown pity party, and he says (in his own special little voice), “I love you,” when you can look back to a time and remember when that was just a dream.

13. Love. Love him. Love yourself. Love the journey. Above all else, the love is what will keep you going. And here is where you have an advantage above those who have not been on a journey like yours. The love you’ve gotten to experience is unlike any other love you will ever know. It has pushed you, pulled you, damn near broken you, shown you its dark and shown you its ugly, and because of that, it’s the strongest love there is. It has been pushed to the brink and withstood Every. Single. Time.

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To the People I've Seen Less Since Becoming a Parent to Children With Special Needs

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All parents know how hard it can be to make time to see friends and family when you have kids of any age. Young children have early bedtimes, kids in school often have lots of extra-curricular activities and teenagers have busy social lives and interests that require a lot of attention. If you have more than one kid then you just multiply that busyness, and if you work then you’re often trying to squeeze all of that in around whatever demands your job places on you, and many times your job doesn’t give a shit whether soccer practice starts at 6 across town or your kid got bullied in the lunchroom. That’s not your job’s job, so to speak.

If you have a kid that doesn’t fit the normal spectrum of kid development or behavior, then you can pretty much kiss life outside your home goodbye. That’s what it feels like sometimes, anyway. Explaining that to someone who isn’t in your shoes can be tough.

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I’m blessed with an enormous family. Various partnerships left me with five parents and seven siblings, many of whom now have partners and children of their own. Negotiating time with everyone has always been a joyful challenge but has become even more so with my kids and their specific needs. That doesn’t leave much time for friendships, either. I’ve never been the type of person who had a huge group of friends and acquaintances. I’m pretty choosy and most of my friends have been friends of mine for many years. I like to say that I make a new close friend every decade or so. My husband has a million friends; he’s the social butterfly. There’s always someone who wants to have dinner or go to a show or whatever. We just can’t do that anymore.

It’s hard to explain to someone — particularly someone who has kids and has figured out how to have a life of their own — that you can’t deviate from your schedule, or that your kid doesn’t do well in certain environments or that you’re just too damn tired.

When you have a kid who is highly sensitive and has sensory issues and delays, schedules and routines are the glue that holds life together and makes your child feel OK. Sure, all kids like routine and feel more secure when they know what’s going to happen, but for kids like my “L,” it can mean the difference between five hours of sleep or two. It can determine whether or not you deal with a tantrum that ends in vomiting — so can the sensory input in different environments like, say, at Target or Chili’s. Too many people, too much noise, too many things to look at can be completely overwhelming. It can exhaust your child in no time flat.

Many, many kids and families with these issues also deal with sleep disorders. It’s incredibly common. For three years our family has lived with the sleep patterns of a newborn. Because L has been breastfed, and that’s been a primary source of comfort, that means that sometimes I wake up every 20 minutes. All night long. A good night is five or six hours of sleep. One night I got seven, and I mean one night. I was so unused to a decent night’s sleep when it happened that it freaked me out, and I was sure there was something wrong with L.

Figuring things out with L has been like putting a puzzle together; we’re finally making progress after changing L’s diet, adding in several different supplements and experimenting with different sensory items — none of which were suggested by our doctors, many of which were suggested by our therapists and naturopath. There have been many ignorant and unhelpful solutions offered by different folks here and there — “She’s spoiled; you need to let her cry it out” being one of the chief suggestions. I can’t think of anything worse for a kid with sensory issues and separation anxiety.

These days, I may get five to six hours a night pretty regularly. I can live on that. But when it comes to entertaining, or going out somewhere with or without the family, many times I just don’t have the energy. And worse, if I have a moment of quiet to possibly make a phone call, many times I don’t have the energy for that either. I simply don’t want to talk. I want to close my eyes, or read a book, or watch a rerun of “The Office”… I don’t have the energy for conversation. I left it all on the field, if you know what I mean.

So friends and family get the worst of that. They get neglected and time goes by and all you can say is, “I’m sorry, I’m so tired,” and it seems pretty feeble. A lot of times my family or friends have invited me over for dinner, and even that takes too much energy and also can’t be controlled… we really do have to leave by 7 to avoid a terrible chain of events that leaves us all seriously depleted.

All I can say if you are one of those people is that you’re in my heart. I think of you often. I love you so much. Please forgive me for not being there. I will be again, one day. Just not today and probably not tomorrow. But I do love you, I do. I do. I do.

And if you’re not one of my people, but someone in your life has a kid with any kind of special need, please forgive them if they aren’t there in a way they once were and love them even harder from afar.

This post originally appeared on Mom in Uncharted Waters.

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This Is What the Autism Commune in My Head Looks Like

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There are times in the middle of the night — when I get all woe-is-me because my kid won’t sleep — that I’m so grateful for my cyber friends who are up with me, either because their kids aren’t sleeping either or they live in Australia. (I love the Aussies! Holla!)

And then I imagine what it would be like if we all actually lived together… in the beautiful autism commune in my head. Would you like to take a tour? (This is not real. This is in my head. I promise I’m not trying to sell you a timeshare. Go with it.)

First of all, it’s not really a commune. It’s more like a gated community. I’m claustrophobic, and I would have to leave once in a while. Anyway…

Welcome to Spectrum Estates, a judgement-free zone for families with autism. Our community, bordered by a fence, has a security staff specially trained in helping folks on the spectrum.  Lifeguards are on duty 24/7.

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Our streets are arranged according to sensory-sensitivity. Sensory-avoidance homes are landscaped during the week while the children are at school. The houses with sensory-seeking kids are landscaped on weekends so the kids can stim off the lawnmowers. Ditto for leaf blowers and snow plows. We don’t worry about spraying for mosquitoes because this is my fantasy and mosquitoes don’t exist.

The climate is warm; clothing is optional. Obviously.

There are several restaurants that cater to every possible food allergy and offer seating choices based on sensory preference. Need booth seating for four in a noisy room full of music and balloons? No problem! Need a quiet corner with plush seats and bland food? We can do it! Our date night restaurant features a separate respite room that serves platters of tater tots and Yoo-Hoo. There’s something for everyone!

Here at Spectrum Estates, we have a community center with specially-designed rooms for obsessions of all kinds. Be sure to visit our displays of model trains and vacuums! Our community center is a place for therapy and playtime, as well as respite care. We have a gym, pool, climbing wall and carousel. There is a tiki bar — no cash necessary. Expenses are covered by member dues and puzzle piece magnet fundraisers. “Support Autism. Buy This Mama a Mudslide!”

One of the best features of the community center is the Moonlighters room. Softly lit and lined with comfy couches, it is a safe place for sleepless children to be sleepless while parents nap or keep each other company. A selection of bean bag and swing chairs are arranged in front of a number of dim screens featuring soothing favorites like Good Night, MoonBaby Einstein, and Tales from the Tracks. We shuffle around in our pajamas and snuggies and clutch cups of coffee or beer. It looks like finals week in college… only with kids.

The center offers social activities and support for the siblings as well. There’s a specially-stocked kitchen in the Sibling Station full of all the junk food we can’t keep in our homes. They can eat gluten and food dye to their heart’s content! We have movie nights featuring anything other than Thomas the TrainThe WigglesBlue’s Clues, and Fraggle Rock. Be sure to stop by for our helpful weekly seminars covering topics such as “So Your Brother Dropped Trou in Front of Your Girlfriend” and “Making Echolalia Work for You!”

And of course, the Spectrum Estates activities director organizes plenty of social and wellness events for the parents — yoga, book clubs, wine-tasting classes, wine-making classes, cooking with wine classes…

Everyone is invited to the birthday parties. Nobody gets mad if you can’t make it. The playground always has enough swings and the trampolines are surrounded by crash-pads. If your kid wants to wear a Santa hat in June, nobody asks why. If your child insists on showing neighbors his plastic bug collection, there’s no need to apologize. If your kid is naked in the front window, nobody will notice.

“Spectrum Estates: Where People Get It.”

Happy Hour is at 5:00.

This post originally appeared on Another Effin’ Autism Blog.

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When I Overheard a Conversation Between My Son With Autism and His Brother

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Author note: The following was a conversation I was lucky to be privy to between my two sons over the course of about 20 minutes. I’ve omitted several things for privacy and cleaned up others, while trying to keep the language as close to the original conversation as possible. I received both sons’ permissions before publishing this.

“Morgan,” Bay asked, “what’s it like to be you?”

The question was asked as the boys finished dinner, and I sat away from them, reading a book. I marked my place and quietly listened.

“Well,” Morgan said, “it’s confusing. You know I’m an autism kid. Noises are big. Clothes have to be soft. Smells are hard.”

He went back to eating, apparently satisfied with his answers.

“But, Morgan, what’s it like? Why is it confusing to be you?”

Morgan took a deep breath, pondered this question some and then said, haltingly, “People think I don’t listen, but I do. Teacher always says, ‘Pay attention, sweet boy!’ but I am paying attention. It’s hard. I pay attention to everything, all at the same time. I can’t pay attention to just one thing… I can’t always use my words. There are all of these sounds and thinks [thoughts] and I can’t just pick one. Can you?”

I sat, stunned. Morgan’s never talked to his father or me like this. We’ve never been able to get him to talk to us like this.

“Morgan,” his brother started, “why do you script? Why do you use Thomas so much and love him so much?”

“I just do. The stories are in my head, ’cause I’m a narrator. I love Thomas; he’s my friend. He’s a very useful, cheeky engine.”

“But you know, other kids don’t like him as much, right? I mean, aren’t you worried about bullies? Why do you talk like that [meaning nasally quality/monotone and scripting]?”

“I don’t care if they don’t like him. Mama says he’s mine to love. Mama and Daddy say bullies just don’t get hugged enough. I told you, I talk like this ’cause Jesus made me this way. Now, stop being a bossy boiler or this conversation is over!” [Note the script]

Me: “Morgan, is there anything that’s really hard for you?”

“Yeah, people when they give me too many directions. That’s hard.” Having my own struggles with this, I agreed with him. “Going new places used to be bad, but sometimes it’s fun now. But not too much. Rounding [numbers]. Noise. Making people understand me.”

“Haircuts used to be really hard, right?”

“Yep, but they’re not so bad now. The hairs still feel like poking on my skin, and I’m scared my ears’ll be chopped off.”

“Mama won’t cut your ears off–”

“But I feel the scissors coming in! My brain tells me my ears are in danger and I need to yell!”

“What would you make people understand?”

“I need to chuff [when he makes train noises and moves his arms in a circular motion, bent at the elbow]). I’m a good boy and really useful. Don’t talk about me in front of me. Kids shouldn’t make fun, the grownups, either. It’s mean. People should understand people.”

I started tearing up.

Bay: “What’s easy for you? You’re good at lots.”

“Making breakfast [he makes English muffins with cream cheese every morning for himself]. Thomas stories. Tying my shoes. Making train sets. Snuggling. Smiling. Laughing. Swimming. Remembering the way.”

“What’s your school like?”

“It’s big like a cave. It full of noise and echoes. I don’t like the gym. It’s confusing and fussy. Everyone is very busy all of the time and when you’re not busy, they give you more work. It’s all work, work, work. Mrs. C’s room is great. That’s where I go for sensory breaks. I have the bean bags, the stimmy toys, all of that. It’s quiet in there, I can tell train stories. Have you heard of the [slips into a Scottish accent] twins, Donald and Douglas?”

“How come you don’t have friends come over?”

“Because this is my home. I have school friends. They’re at school.”

“Don’t you want to play with other kids at home? Other than me?”

“Sometimes. It’s not important to me. I like you, Bay. Any other questions?”

“Do you like being autistic, Morgan?”

“Do you like being redheaded?”

“Um, I don’t know how to not be redheaded.”

“Well, Bailey, I’m an autism kid. I don’t know how to not be one. I like being me, even the hard parts.”

I like that Morgan covered the important stuff.

two sons peaking out from behind a police public call box

 This post originally appeared on Deciphering Morgan.

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