Every Kid With ADHD Needs ‘Captain Underpants,’ And Here’s Why

“Attention Deficit Hyperactivity Delightfulness is how I prefer it.  Everyone else calls it a disorder,” says Dav Pilkey, the popular children’s author of the Captain Underpants series.

When Pilkey was in second grade, he was diagnosed with ADHD (attention-deficit/hyperactivity disorder) and dyslexia.  Like many children with ADHD, Pilkey had a difficult time focusing, staying still, and “behaving properly” in class.  He was constantly criticized by his teachers and he often felt like an outsider in the classroom.

In second grade, Pilkey began creating Captain Underpants comic books, which his classmates absolutely loved.  He had a natural talent for making kids laugh and he loved it.  His teacher, however, was not fond of Pilkey’s cartooning at all.  One time, she even ripped up one of Pilkey’s Captain Underpants drawings in front of the entire class, told Pilkey that his comic books would never amount to anything, and sent Pilkey out into the hallway.

What do you think young Pilkey did then? Well, he did what any other determined and hyperfocused ADHDer would do: He immediately began creating another Captain Underpants comic book!

During Pilkey’s childhood, his parents were very supportive of his passion for cartooning and they never listened to the negative critiquing of his teachers about his ADHD.  His parents embraced his ADHD and helped Pilkey see his ADHD as a remarkable gift.

When Pilkey got to college, one of his professors noticed his gift, as well, and encouraged him to become a children’s author. Pilkey then wrote several children’s books and at 31 years old, got “Captain Underpants” published. Pilkey is a classic example of what having supportive and loving family and teachers can do for a person with ADHD. Twenty years after “Captain Underpants” was first published, the series is still a huge hit with kids, mine included.

Let me tell you a bit about my own ADHDer.  She is eight-years-old and before she read her first “Captain Underpants” book, she hated reading. Getting her to read her assigned book for school was like pulling teeth. She complained that reading was boring and a waste of time. When she got to a big word that was difficult to pronounce, she’d become frustrated and start crying. She would also lose her place a lot and would reread paragraphs. She was also not very good at comprehending what she had read, because even though she was reading the words, she wasn’t really paying attention to the words.

Then one day, “Captain Underpants” entered her life and tra-laa-laaa, my ADHDer loved reading! While we were at the library, she asked if she could check out a “Captain Underpants” book and I said “Yes, of course.”

As soon as we got home, she plopped herself on the couch and began reading. Then she’d lay upside down on the couch and keep reading. Then, she’d kneel down on the floor and use the couch as a table and keep reading.

Needless to say, she devoured that book. While she was reading, she was smiling and laughing. She was really enjoying herself, and I have never seen her love reading so much. I have Dav Pilkey and his ADHD-mazing imagination to thank for that. He absolutely has a talent for getting kids, particularly kids with ADHD, to love reading!

The layout of his books are great for kids like mine, too. The words are not overwhelming, the chapters are short, and there is a picture on practically every single page. There are even mini-breaks from reading the kids take without even realizing it with Pilkey’s flip-o-rama feature throughout the book.

Now, I know the “Captain Underpants” series is known for its potty humor, which is one of the main reasons why children love the stories so much, but as a parent of an ADHDer, what I love the most about the series are the relatable characters for my ADHDer and the hidden (perhaps not-so-hidden) messages that kids with ADHD pick up on.

The main characters in “Captain Underpants” are two little boys named George and Harold.  They are best friends who are both fun, creative, mischievous, and smart… oh, and they both have ADHD. Pilkey makes it no secret that the boys have ADHD and explains what it is like for children with ADHD.

“George and Harold weren’t really bad kids. They were actually very bright, good-natured boys. Their only problem is that they were bored in school,” Pilkey writes in Captain Underpants And The Perilous Plot of Professor Poopypants (Yes, that is the actual title of the book).

Pilkey also includes some hidden ADHD messages behind his stories. Movie Spoiler Alert: In the new Captain Underpants film, Professor Poopypants hates anything that is funny, so he creates a machine that zaps the humor out of people’s minds so that people will no longer think anything is funny.  Professor Poopypants tries to zap the humor out of George’s and Harold’s brains, but it doesn’t work, because the humorous part of their brains are too big and powerful.

We know that the brains of people with ADHD are hardwired differently. ADHD is a condition people are born with and it is not something people can simply grow out of. Nobody can “zap” ADHD out of anyone and, honestly, why would they want to? ADHD is a big part of what makes children like George and Harold so fun and clever, and ADHD is a big part of what makes Pilkey so imaginative and passionate.  If it weren’t for ADHD, Captain Underpants wouldn’t even exist!

My family and I had the pleasure of meeting Dav Pilkey last month at his Supa-Epic Tour O’ Fun celebrating 20 epic years of “Captain Underpants” and the release of his latest “Dog Man” book.  It was such a huge honor to be able to hear Pilkey tell us about his ADHD and how he used it to his advantage.  He definitely gives ADHD a good name!  It is so important to have role models in our ADHDers’ lives that treat ADHD as a gift.

Pilkey is, without a doubt, one of the very best role models for kids with ADHD today.  We are so happy we were able to tell Pilkey how much his books mean to us, and how ADHD-mazing we think he is.  It was definitely a moment I’ll never forget, because I could see in my daughter’s eyes that she was proud to be an ADHDer, just like Pilkey. Just like Pilkey, she too is creative, intelligent, and remarkable. And just like Pilkey, there is no doubt in my mind that she too will be going places.

This Is What I Want To Say To The Friend I Pushed Away

I am sitting here thinking about our relationship and about how much I love you. And how I rarely see you. We joke that it’s because life is so busy. We are in our 30s and have jobs and babies. We are in that stage of life, I guess.

We are always saying that this is the month that we will finally find the time to get together. And when this month passes, we will laugh via text and joke about how someday soon we will have more time. One of these days, we will actually get together and do something. I’m not sure if that’s entirely true though — at least not for me.

My life is different. As much as we want to pretend it’s not, it is. We are different. We are best friends. We are practically family. I love you and your babies. But we are different. And we dance around it like it’s not true. Like the differences aren’t the white elephant in the room.

My son has autism. He has a disability that has completely turned my life upside down. It’s been rerouted more times than I can count. And most days, friend, I am just hanging on for dear life.

I Am Sorry

I want to say I am sorry. I am sorry that I don’t make plans with you. I am sorry that I won’t commit to doing anything. And mostly, I am sorry that I always cancel. You know that cliché “It’s not you, it’s me.” Well, this time it’s true. This is all on me.

This morning, I woke up at 3:07 a.m. with Cooper. This is common in my world. Some days are worse than others. There are mornings where he kicks me. Mornings where I have to physically restrain his 60-pound body. Mornings where I am so close to giving up it’s scary. And there are mornings where I don’t know how I’ll make it through the day.

I could tell you all this, but I don’t. I stopped trying a long time ago. And not just with you friend, but with everyone. My life is not believable. I sound like I am being dramatic. Or I feel like I am whining. My world is so foreign and confusing that I don’t know how to explain it to anyone. And if I try, like the good friend that you are, you offer solutions. Or ideas. And I know they won’t work. So I stopped talking a long time ago.

Committing to Autism

And because of it, I ignore your calls. I send them to voicemail because I physically don’t have the energy to answer. I watch your texts stack up. If we do connect, I refuse to commit to plans. Or even worse, if we get something on the calendar, I always cancel. I want you to know I don’t mean too. My son is medically fragile. His needs change from day to day. I literally have no control.

I also cancel because every day in my world is extreme and different. I stopped trying to fit into the world a long time ago. I want you to know that in the beginning I really tried.

When Cooper was 2, we could still go on playdates or go to parks. I’d look and see you sitting and smiling with our friend group and enjoying your kids. I’d be covered in sweat, running, chasing, and on the verge of tears. I’d overhear you all talking about potty training and preschool. I’d be thinking about day treatment and speech therapy and praying to god my kid didn’t hit anybody.

My world is now doctor’s offices, therapy appointments, and autism. You could say I gave up, friend. I don’t look at it that way. More so, I committed to my son. And in doing that I had to say goodbye to the rest of the world. Or at least it felt that way in the beginning. I didn’t know how to live in both worlds. It was too hard. Too sad. Too confusing.

I need you to know the weight of my child’s disability rests solely on my shoulders. It’s bigger than me. It’s bigger than our friendship. And it’s completely out of my control.

I Am Different

I know that I am not the friend you remember. I am different. I used to be so much fun. I was up for anything. I feel the strain between us too. God, I feel it. I miss you. I miss us. But most of all, I miss the friend that I used to be. Sometimes, I can tell that you don’t know what to say around me. Maybe you think I’m fragile or sensitive. Or maybe you are worried to tell me about your kids’ successes because it will hurt me. Please don’t ever feel that way. I love your kids like my own. But I’d be lying if I said it didn’t sting.

I sometimes try to figure out how this all happened. How did I turn into a different person? I like to think that it evolved slowly over time. But that is not true. It happened all at once.

It happened the day Cooper was born. Before that we were the same. College, wedding preparations, baby preparations. I was you. You were me. We were young. We were blissful. I was completely and utterly naive to the hurricane force that was going to soon control my life.

The Autism Label

Then, wham. I was different. I had a label. I was an autism parent. I immediately carried it on my shoulders. The roller coaster was more than I could handle at times.

The differences between us were glaringly obvious.

My baby didn’t sleep. Yours did. Mine never stopped crying. Your child cooed and smiled. Mine was chronically ill with ear infections and constipation. I never slept. You did. You’d mention how it was getting easier — this parenting thing. I would just smile.

I saw how you started to miss me. I saw how I started to slip away. Don’t think I didn’t know it was happening. I was part of every second of it. But I could pretend then. We could pretend. Our children were infants. And every mother we knew was exhausted. So this was going to be fine. We would sneak away for a glass of wine and laugh about motherhood. We’d talk about the vacations we would take when they were older.

No More Pretending

Then the differences started to show in my child. He was no longer just a bad sleeper or a difficult baby. This was more serious. The differences between our children hung in the air when I was with you. Our babies would be sitting side by side on the floor, and there was no pretending anymore.

We started talking about how my son was not autistic. We would trade stories of other mothers we knew who went through the same thing — and it turned out fine. They were fine. I was going to be fine. This was going to be fine. You’d find a blog post or a news article about a late talker and send it my way. We both agreed it wasn’t autism.

Then, suddenly, I had a diagnosis.

Autism

My life quickly became doctors, therapies, and IEPs. I couldn’t relate to you anymore. And you most definitely couldn’t relate to me. It was like I was in a movie. I watched myself turn invisible right before your eyes. I felt out of place. I felt irrelevant. But most of all, I felt jealous. My child was different. Yours was not. Your child met milestones. Mine did not. Your child said his first word. Mine did not. Mine would scream and hit his head in frustration. Yours sang me a song. You potty-trained your child in a month while I frantically searched for size 7 diapers.

And then I completely slipped away into this new world. I stopped calling. I withdrew. That is the blatant truth. We can dance around it. You can say that you are okay with Cooper. I hear it all the time from friends and family. I know you love him. We all do. But that’s the thing. It wasn’t you. It was me.

I didn’t know how to be a good friend anymore.

I know this would all be fine if we just came for a visit. But we can’t. And we don’t. The preparations for a visit to someone’s house are epic. Do you have a fence? Do you have Wi-Fi? Pets? Do you care about messes? The list goes on. Snacks? Sippy cups? Milk? In a sense, I still have a newborn. A 60-pound newborn that can do some serious damage.

And I believe it when you say that you love Cooper. You don’t mind the screaming and the pacing. But I do, friend. I care. I care about parenting in front of you. I care that I can’t sit and talk to you because of Cooper. I care that I wake up at 3:15 a.m. I care that I got poop on your floor while changing my 6-year-old.

In the back of my mind, I wonder how long you will hang on. When will it be too much?

My Life

I want you to know that I wake up every day happy with the best of intentions. I’m going to reach out to friends. I’m going to get back into the real world. And by the end of the day, sometimes I can’t see straight. It takes all my strength to respond to a day-old text message from you. I will go on Facebook and see that you signed your son up for tee-ball. Or maybe it’s karate this time. I guess whatever activity a 6-year-old does these days.

I will feel the pain in my stomach. I am over here researching special needs strollers for children. I am trying to figure out how I am going to pay for it. And how I am going to be strong enough to bring it out in public for the first time. How do I find one that won’t stand out? Or make us look too different.

What you are doing isn’t wrong, friend. It’s amazing. I am so happy for you. Your children are beautiful. You are beautiful.

I’m just not there. I need you to forgive me.

I’m Sorry

I am letting you off the hook, friend. Autism isn’t your world. It is mine.

I want to thank you for standing by me. And I want to ask you to not give up on me. Your children are going to continue to grow and thrive. There are times where I think Cooper and I will be in the same exact spot.

Please remember us. We are trying so hard to fit into your world.

I want to promise you that I will come back. I believe this will get easier. One day, I will be me again. And we will be us again. Your kids will be grown. And I will still have Cooper living with me. But we will be fine. This will all be fine.

This Is What Doctors Need To Remember About Autism

“Anyone have a [insert professional here] who works well with special needs kids?” –said by every special needs parent on every local special needs Facebook page

Last year was the first time in my son’s entire life he got through a dentist appointment relatively unscathed. Sure, at first he flapped and screamed and excreted that sweat stench he does as if he is a sea slug attempting to keep predators away, but ultimately Dr. Nate (not his real name) prevailed with him in the most awesome way. My son received the first X-rays of his entire life, full dental exam featuring the scrap-y, spinn-y, and spitt-y things, and actually left the office smiling.

No one can resist the appeal of Dr. Nate. *powders nose, reapplies lipstick*

That is the thing with ALL kids on the spectrum. Once you crack the code on how to navigate around or through the anxiety, things tend to go a bit better.

Conversely, the same is true. Once you REAAALLLY approach something wrong, the damage is done, and it is going to take a hell of a lot to bounce back from armageddon levels of panic. 

Apparently, Dr. Nate and his swoon-worthy dental practices on my autistic kid made more of an impression on me than we did on him because he didn’t remember his approach from a year ago. At our visit today, he was visibly panicking/attempting to act cool, and Dr. Nate was taking a more gentle and cautious approach. In a red-carpet-level performance, I loudly proclaimed I was going to the bathroom (office visits tend to go better when I am out of eyeshot). Without skipping a beat, Dr. Nate said, “Sounds good. I’m going to take a look here at his teeth, but you’ll be right back. So…everything is okay.”

Of course, I was standing right outside of the exam room door, and I could hear him firmly reassuring my kiddo. I peeked in to see my son standing in the corner with a toothbrush and the toothpaste from home and the dentist mopping up his face with gauze. When all was said and done, Dr. Nate said to me, “Can you come back in three months? I think one lesson we learned is it’s best for mom to wait outside. I think next time, I will use a firmer, more direct approach. It seems to work best with him.”

I thanked him profusely for his insight and patience. He replied, “Every kid responds to something different and sometimes even from visit to visit.”

Bam. 

Every kid responds to something different. Even from visit to visit.

Yes, Dr. Nate. You just summarized precisely how to to work with autistic patients. They are all individuals with individual needs, and you must be aware of this at every visit. And then you meet them where the are.

Pretty much just like everyone else.

While we are at it, a shout-out to all the other doctors in our lives who got it too:

To the orthotist who met us in the back of our van for years in order to cast my son’s feet for braces

To the physical medicine doctor who immediately started using sign language while she talked to my son when she realized he might not understand her words.

To the hospital nurse who spoke directly to my son to ask him his name, age, and where he went to school instead of asking me right in front of him.

Medical anxiety is a serious issue for many autistic individuals. The sensory assault, the inability to clearly communicate, and the fear of not understanding what comes next can be overwhelming to both the patient and caregiver. We recently had a specialist appointment where my son was tearful and fearful. It was suggested we could move forward with the visit in one of two ways: 1) I could hold my 12-year-old down by myself in my lap, or 2) the doctor and two office staff could bum rush him and hold him down on the floor.

I wondered out loud what it would be like if, while we were standing there talking, two men twice my size came around the corner from out of nowhere and held me down while a third approached me and I wasn’t sure what he was going to do. Boy, oh boy — if I wasn’t worried about talking in the hall before, I sure would be from here on out!

It may seem odd to many of us that a doctor’s office would not be equipped to handle their growing clientele of autistic patients, but really, physicians have a limited amount of time to spend with their patients and many of them have absolutely no specific training in disability. As parents, we take it upon ourselves to make certain we take all the precautions with all the details and do all the educating so an office visit goes as smoothly as possible.

Doctors, take your lead from Dr. Nate. His approach holds the key to your best success with every one of your patients. Remember they are human, figure out what they need on any given day, and then do that. We moms will take care of the rest.

Here’s What You Need To Know About The ‘Problem Child’

I recently read an article in the New York Times entitled, “The ‘Problem Child’ Is a Child, Not a Problem.” It discusses how the appropriate method of behavior modification should be used by teachers to help “problem” children fare better within the classroom, especially in the earliest, most fragile years of their education.

The article itself was fabulous and extremely validating to parents of children with emotional and behavioral challenges. It recommended that teachers receive more training in adequate techniques to prevent situations like the one highlighted in the article — the case of an 8-year-old child having long-term emotional effects, subsequently resulting in educational challenges, from preschool teachers managing his behavior improperly. And it emphasized that poor behavioral management in early childhood can have lifelong consequences.

Unfortunately, I made the big — no huge — mistake of reading the comments. I have never been so blown away by a lack of empathy and sheer ignorance about this population of children. I am so angered and sad, but mostly, I’m disappointed and fearful. I’ll be the first to admit that much of the challenge with children like this is their behavioral functioning. However, another significant challenge is that the driving force behind such behavior is completely misunderstood. Here, right in front of me, was the glaring proof of such stereotypes — and not just any proof, but proof presented in well-thought-out and intelligent comments in the New York Times.

I am ashamed to admit it, but often, when I am out in public with my son, I find myself making justifications for his behavior in one way or another. An eye-roll to a person here to indicate, “I know, I know. I can’t believe he is doing that either!” or a harsher than necessary talking-to so others around me don’t think that I’m just ignoring such behavior — a behavior, mind you, that he likely cannot control and that my stern warning will do nothing to deter. I then find myself feeling terribly guilty: Why did I feel the need to defend anything my son is doing to anyone, nonetheless a stranger? Well, the Facebook comments section for this article also reinforced exactly why I feel such a need.

The comments fell into a few horrendous categories:

1. The “bad children come from bad parents” type of comments.

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I hear this often — that a child’s behavior is the direct result of bad parenting. While yes, it is true that sometimes my 7-year-old simply acts like a 7-year-old, and in those moments, I probably don’t handle it to the very best of my abilities. I mean seriously, who parents perfectly all the time?

This is not what is going on for a child with ADHD. Most of the parents whom I know personally — and the thousands whom I interact with regularly as part of the vast support networks on social media — work tirelessly on their child’s behavior. We use behavior charts, talk to doctors, use family trainers, send our kids to cognitive behavioral therapy, and are just generally on their cases about every move they make all the time. We are stellar parents who have literally tried everything, including medication in many cases, and we still come up short. Why? Because our children are just wired that way and no matter how hard we work, we cannot completely deter the behaviors that come along with ADHD and other similar disorders.

2. The “parents should help the child — it’s not the teacher’s responsibility” type comments.

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Most parents are doing all that they can with the resources available to them to help their child succeed in and out of the classroom. This is true for both the parents of special needs children and typical children. Even the mother of the child in the article stated that she would leave her child at school and then go and cry with worry. It is overwhelming to have a child like this in a way that is unimaginable to others unless they are going through it themselves.

Diagnoses that largely manifest themselves behaviorally are incredibly challenging to treat. Like a medical diagnosis, it cannot be treated in isolation. For behavior modification to be successful, every person who works with that child must be on the same page and consistent. I often say that “consistent” is my least favorite word — you try getting teachers, coaches, babysitters, grandparents, etc., to follow a specific plan on how to reinforce positive behavior in your kid. Any slight deviation in the behavior plan can have dire results. Something as simple as you attending to your other child and not providing the proper, immediate reinforcement can set you back days or even weeks.

A child is at school for a good portion of their day; if the teacher does not understand the behavior plan, then the child might as well not have it. Additionally, many of these behaviors directly impede their learning, and therefore require the direct attention of the teacher, the person who is responsible for educating them within the classroom.

3. This leads me to the next grouping of comments, the “children like this shouldn’t be in class with regular students” type comments.

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These were the most hurtful comments of all. I completely understand where the parents were coming from; the comment was always based on the idea that these students take away from the learning experience of other, more typical children. That’s just disappointing and shortsighted. Let me be clear: I am hyperaware of how my son’s behavior affects others, especially his peers, but separating him is not the answer — for any child. My son teaches others empathy and understanding. He shows them that not all children are alike. He demonstrates daily how one can overcome struggle. He is a good friend and a kindhearted and genuine child.

He adds to the educational experience of other students by requiring their help with reading and handwriting, and when students become the teachers, it is excellent for their development. He also adds to their educational experience by helping them with anything STEM-related. Many of the comments also expressed concern that these children take up too much of the teacher’s time. I get that — I want both of my children to get the time they deserve from their teachers and some days they are going to be the children who require the time, and other days it will be someone else’s child.

4. The “children like this are just bad kids” kind of comments.

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No, no, they are not. If a child is acting out, it’s for a reason. One person even went so far as to say that children like this were all psychopaths and that instead of teachers being trained in behavior modification, they should be trained in the early detection of such a disorder. I mean…really?  When my son can no longer sit still or his hand is aching from writing due to his poor hand strength, he acts out. He’s tired, he’s 7, and he’s being asked to do something that he simply cannot do. He is not bad; he is just a child who is challenged daily by his ADHD. 

The amount of parental blame in the comments was just startling. Attitudes and ideas like that only serve to alienate the most fragile of students and their parents. Instead of looking at the parents, we need to be looking at the public education system in its entirety. We are failing all students, typical and atypical.

Increasing the number of teachers per school and per classroom, and allowing for a smaller student-to-teacher ratio, would do wonders to allay concerns of all parents. Creating programs that allowed for more flexibility in learning modality instead of just focusing on the direct teaching method, would also benefit all students. Pouring money into our educational budget instead of slashing it to its bare bones would benefit all students.

We need to stop looking for the simple excuses and start focusing on better, more effective long-term solutions.

What Kids With ADHD Want You to Know

If you parent a child with attention deficit hyperactivity disorder (ADHD), you are probably all too familiar with the judgment that comes from other people, especially when you are trying to figure out how to best parent your child.

Some might judge your parenting and claim you just “need to discipline your kid,” while others label your child as “naughty” or “out of control.”

No matter the explanation, sometimes if feels as if people have little room to be compassionate and gentle toward kids with ADHD (let alone that adults deal with this too). There is little room to recognize their brains work differently and that success looks different for different people.

It is heartbreaking to think our children with ADHD grow up believing they are “naughty.” We need to help change their narratives.

As parents, we tend to speak up for our kids, but our kids have their own voices and messages to share. This is why, here at The Mighty, we wanted to provide a platform for kids to share what they wish other people understood about their ADHD.

So we asked parents to have a conversation with their kids and tell us the one thing their child wishes people understood about their ADHD.

Responses came from children as young as 6, up to college students.

These were their responses in their own words:

1. “I wish people would not act so negatively to my hyperness.”

2. “I wish people would stop calling it a disorder. I’m different, my brain works different, that doesn’t mean it’s bad or wrong.”

3. “I try my hardest not to be naughty.”

4. “I just wish people understood me.”

5. “I hate homework. I spent all day writing at school, why should I write at home? Home time is resting time.”

6. “I just wish they’d realize I need to fidget.”

7. “I need to listen to my music loud to drown out my racing mind. I talk fast because I want to get it all out, and if people are listening and engaged I can stay on track easier. When I come home from school my ‘coping skills tool box’ is almost empty. I need to withdraw and rest. I am ‘done.’ During TV time, rocking and bouncing help me to follow what is happening. I also needs subtitles on every show.”

8. “I can’t just stop being repetitive when I am moving.”

9. “I wish people would understand I’m not a bad kid.”

10. “When I was a kid I wished people understood I couldn’t just turn it off. I couldn’t stop my brain from jumping around just like I couldn’t stop my heartbeat or my lungs breathing. And it was as frustrating to me as it was to them.”

11. “I wish people knew just how smart I really am.”

12. “I can’t make my brain stop. I don’t control it.”

13. “I wish people understood that I am not lazy [and that I do] care about my responsibilities. My brain is a thousand places at once.”

14. “I cannot simply control myself. This lack of control makes me feel like a failure most days.”

15. “I wish my teachers understood that I can’t help fidgeting in class. It is unfair to get in trouble for something I can’t control. Sometimes it’s a good thing because I always have lots of energy to get stuff done. ADHD isn’t bad, it’s just me.”

16. “I want to behave, but my brain sometimes tells me not to. I have really big emotions and don’t mean to get so mad when things don’t go my way.”

17. “I wish people knew how hard I try to maintain and to fit in — especially when I ‘lose it.’”

18. “My brain pops, and it’s hard to focus; it makes my body need to move.”

19. “I wish people understood that I don’t always mean to say the things I say. I have so many thoughts in my head that sometimes things just come out of my mouth whether I want them to or not.”

20. “I am really, really trying, but most people think I’m being lazy.”

21. “I wish I could remember all the things I didn’t even know I forgot… like remembering to turn homework in.”

22. “My brain feels like it’s going to vomit.”

23. “[My symptoms make me anxious.] I wish people were more understanding when I’m having a hard time.”

24. “I’m a terrible standardized test-taker.”

25. “I do not intend to have bad behavior. Please understand, adjust, and help me.”

26. “It’s like being stuck on the tilt-a-whirl. No matter how hard you try to focus on what’s going on around you, it’s all a blur because your focus is on everything else at the same time. Sometimes I feel like my head is going to explode because everything is going on too fast and at the same time, and I can’t pick which thing to turn on and still turn off the rest. Like in English when I’m trying to read, but I can’t remember what I read because I’m thinking about math and science and lunch and recess at the same time. I forget a lot, like if my dad asks me to go get something from my room, I get there and have no clue why I’m there and have to go back and ask because I heard I was supposed to go up but then was thinking about other stuff already and forgot why.”

27. “You ask me why I don’t enjoy learning more. You say you wish you had my brain because I usually have to only look at something once or twice to have it memorized. What you don’t realize is it takes me a couple of hours to quiet my brain down to pay attention long enough to look at that something that has to be memorized.”

28. “It’s hard for me to remember if I just put shampoo or conditioner in my hair. Did I already do it? Do I do it again? Which order? Did I remember to put soap in with my laundry? My ADD makes my memory horrible!”

29. “When I am on my ADD medicine I know I sit still more and I get things done faster. You say it makes me smarter. When I take it, though, I don’t laugh or joke as much. And I don’t feel like singing either. And I feel so emotional. If you were me would you rather be smart or happy?”

30. “It’s not that I don’t pay attention. The issue is my mind is always in one million places at once, and I easily forget things because there’s always so many things going on in my head, and with so many things on my mind, it’s almost impossible to decide what to remember and what to forget. Another thing I’m going to add is I am not ‘dumb.’ I am very good at solving problems. My issue is memorization. All classes anymore are memorization and not coming up with solutions to real-life problems, and that’s what I excel at.”

This post originally appeared on The Mighty.

My Daughter With Autism Is My Greatest Teacher

My daughter Emerson loves to tell me about her dreams. Upon listening to them, I realize that they are more “stories” that she creates in her head to connect things that have happened throughout the day or the week, things she wants to hold on to as significant, or perhaps file away to understand a bit better.

She tells me these 10-plus-minute-long “dreams” as I am brushing her hair in the morning or driving her to school, my mind drifting as she chirps on excitedly. I don’t dare interrupt these times because she is sharing a piece of herself with me, and I know how lucky I am to receive it.

We received her official diagnosis the other day: autism spectrum disorder. I sat crying in the waiting room because I knew that it was the last time I would ever be anywhere where I didn’t know “for sure.” The last moments I had under the enveloping cloud of uncertainty that had become so familiar over the last several years.

Sure, it was always apparent that something was “off” as she grew and developed (or at times, didn’t). As a small child, new situations terrified her; the uncertainty of a new experience rushed at her like a tidal wave, enveloping all that she knew was safe and predictable. The only way she knew how to cope with the overwhelming sensory onslaught that followed was to throw an epic fit.

My poor older daughter learned to deal with the disappointment of either me or my husband having to sneak out the backdoor at recitals and preschool graduation ceremonies to calm our panicking toddler. We also noticed that her motor skills were underdeveloped, and she experienced extreme aversions toward certain textures, whether they belonged to a princess costume that was too rough to the touch or a snack that her mouth found to be highly offensive.

No parents see these behaviors and telltale signs in their toddler and immediately jump to the autism conclusion. It’s a process which unfolds excruciatingly over time. Excuses and other possible explanations for the behaviors are created, and sometimes clung to like a life raft. In those times, it seemed crucial to have support from those surrounding our family.

Instead, we were mostly met with trepidation radiating from family members not knowing how to interact with her; judgment, razor-sharp and cutting deep with words such as “Are you positive she just doesn’t need a different parenting approach?” and “Just send her to my house for a week. I’ll ‘fix’ her right up.” We were rejected by family we had asked to babysit her — she was too “unpredictable.” We were rejected by entire groups of friends who were “turned off” by our actions in trying to alleviate her anxiety and overstimulation.

So many have been quick and even eager to judge, but not to understand. Not that I understand much of what her inner life is like — at times, she draws into herself like a flower shrinking away from the darkness. Other times, her emotions swell and burst from her, sometimes as anguished confusion, but sometimes as joyous excitement. How I wish others would have looked beyond their indignation to see the wonder and brilliance that is this child. And how thankful am I that I was blessed with her pure heart, which does not know how to hate, or resent, or hold contempt…or judge.

I consider Emmy to be one of my greatest teachers, and I hope others will see the joy, quirkiness, and mystery wrapped up in that delicate little package. I hope people will learn more and more to understand instead of judge, offer help instead of give “advice,” and try to embrace the person in their lives who is perhaps a bit different, but who perhaps holds a multitude of wonder within her “dreams.” I know I can’t wait to hear about tonight’s while we brush our hair in the morning.

Don’t Be Sorry I Have A Child With Autism, Just Be Supportive And Kind

Parents, friends, and all loved ones of individuals with a child facing a potential diagnosis, this one is for you. Look, I get it. You feel like you are in a no-win situation. Trust me, we know the feeling. If you admit that something is amiss with the development of our child, we might get defensive. And if you comfort us by assuring us that nothing is amiss, well, then you’re being dismissive and just flat out don’t get it.

But cut us a break. We are equally conflicted, and we are worried, and waiting, and worrying some more.

Should the day arrive when we come to you and share with you the words we have been hiding from for months, sometimes years, please choose your words carefully. Some people in my life had a hard time processing the news. Um, like I didn’t? It’s taken me a very long time to even think about a diagnosis, let alone say it out loud.

A certain family member of mine was in slight denial as to my son’s autism spectrum disorder diagnosis and “needed some time” before they were ready to confront it. Oh really? Are they okay? Is there anything I can do for their personal comfort level?

Perhaps I could join them on a one-way trip to fantasyland where we can eternally live in blissful ignorance. Except, I can’t. I don’t have the luxury. I have a child who needs me to be honest with myself, so that I can get him the help that he needs to thrive in a world that is not designed for him, so excuse me for keeping it real with you.

If you think you are in denial about our child’s diagnosis, try imagining how we feel. It is our instinct as our child’s protector to want to close our eyes and run away and hide from an unfamiliar new reality that undoubtedly promises a lifetime of challenges. But we don’t. We can’t. We didn’t ask for this. We aren’t inventing some sort of sick ploy for sympathy. It’s not a conspiracy, and it is as hard as we say. Actually, it’s harder.

If you haven’t seen the behaviors that you believe justify a diagnosis, then know that’s exactly the point. You haven’t seen them, but we do, every day, and we are the ones dealing with them, tirelessly. So when the people in our lives have a hard time coming to terms with our life circumstances, it really adds on a full serving of insult to the injury we are still working on. We have to show up for our kids, and you should follow our example by showing up for us.

Questioning, seeking, confronting, hearing, and accepting a diagnosis has not exactly been a picnic in the park for us, so can you please not make this part harder on us than it has to be? The last thing we need right now is to convince you of something we, too, are struggling to accept. We are working full-time to support our children through this, so please don’t make us work for your support too. When you question a diagnosis that we believe in our hearts to be accurate, you might as well call us crazy, dramatic, paranoid suckers who are looking for sympathy, or who just simply don’t understand how difficult it is to be a parent. And that’s not fair. Don’t deny who my child is to accommodate your comfort level.

When our child has a good moment, or a good day, or a good week, it does not mean that they are cured, or that we were wrong, or that our child is not autistic. Rather, it means that they had a good moment, or day, or week, and that is wonderful. It’s everything we want, and pray, and hope for in the wee hours of the morning when we are too restless to sleep and too tired to dream. But it does not mean that our kids are fine, or better, or that tonight won’t be a different story.

When our children are thriving, it means that they are growing and working hard, probably in speech, behavioral, and occupational therapies. Don’t discount the tears they shed and the frustrations they faced earning each and every single small victory because they clash with the curtains in your ulterior universe. Learn to live with us, in our very messy and very real realities. They may not be as comfortable as yours, or as pretty to look at, but guess what? It’s ours. It’s home, and there is certainly no place like it.

So, quite frankly, if you aren’t feeling at home, by all means, don’t come over. But if you want to love us, support us, and know us, you must accept us and our lives at face value. Making it all better, with a kiss and a Band-Aid isn’t going to cut it these days. Autism is real. The struggle is real, we deserve real support, and it’s not that complicated. Trust our judgment as parents, and as people whom you love and respect. Embrace our children for the imperfectly perfect, loving, smart, and yes, still challenging kids who they are.

One Of The Proudest Moments Of My Life Happened In A School Restroom Today

Having a child with sensory issues and autism is not something I anticipated when becoming a mother, but it’s become my normal.

I have been hyperaware of restrooms for almost five years. The noises of flushing toilets and hand dryers, especially, are too much for my son to handle. They scare him, overwhelm him, can be physically painful for his ears, and he has had intense anxiety over them since he was a baby.

I frequently hold it if we are out so I won’t need to bring him inside of a public restroom. Potty training was extra-stressful as we had to assure and reassure him that he would be alright if someone turned on a hand dryer while he was going.

Today, I walked to August’s elementary school, holding his hand and guiding him through a tour of the different areas in this place he will be spending the bulk of his waking hours. We go back tomorrow and Friday so I can make sure he knows where things are, what adults will be near him if he needs help, and how he is expected to behave.

We passed by the boys’ restroom after we explored the cafeteria, and I asked August if he wanted to flush the toilet to check out the noise level and try washing his hands on his own.

After washing his hands, he pulled down a paper towel to dry himself off. Then he stared for a moment at the dryer. I told him he could try it if he wanted to — my attempt at encouraging him to try new things with no doubt in my mind that he was going nowhere near that contraption.

He placed his hand underneath and I braced myself for the meltdown, shocked that he had done anything and waiting for the fallout.

There was none.

He liked the blue light that glowed on his skin. He giggled at the way the force of the air moved the flesh on his palms.

I started crying, staring at my son feeling fine and even laughing at something that has been a source of fear and anxiety for him for almost his entire life. It’s a stupid hand dryer, but this moment meant the world to me.

Seeing him adapting to the world around him and trying new things are small victories, but this journey makes them feel like Olympic-sized wins.

My son used a hand dryer today. It was one of the proudest moments of my life.

We Are An ADHD Family, But That Doesn’t Mean You Need To Ostracize Us

My 7-year-old, 5-year-old, and I have ADHD, and we are always forgetting my oldest’s backpack. Sometimes we don’t manage to get it out of the house. Other times we don’t manage to make it out of the car. Then there are the days where his battered Star Wars backpack — the stuffing is coming out and I haven’t gotten around to replacing it — actually gets to the classroom. When he’s finished, he stuffs his work in there. Then he leaves it on the floor and trots out.

I know this annoys most of the mothers in our homeschool co-op. They have their shit together. Blaise and I are square wheels clunking in an otherwise well-run machine. ADHD can do that.

It’s isolating to be the only person who can’t seem to get their kid to class with his backpack, and I’d imagine, isolating to be the kid who’s always leaving his backpack somewhere. And if it isn’t today, it will be one day, when the kids around him start to snicker “That’s Blaise.” But that tic isn’t Blaise. That’s Blaise’s disease, not him — and he deserves the grace of people knowing the difference.

Blaise doesn’t have many friends from his class. I don’t know what goes on there, but I’ve come in to find him sitting in the chair while all the other kids do an activity because he was talking too much or moving too much or distracting other people. He’s always having to borrow books or pens or crayons because of that aforementioned backpack-forgetting. Then he finishes his work quickly, so he can get to his favorite part: the drawing afterwards. Not really the type of kid others want to be friends with, especially when you add that he’s small, he’s loud, he speaks out of turn, and he’s very, very smart.

We don’t get invited to any birthday parties.

And I don’t have too many close mom friends. Well, maybe two or three of the moms. They’re sweet, but it’s hard to tell if they’re that nice because they really like me or because they’re really that religious. The other moms say “hey.” They remember my name. I do not remember their names, which sends me into a spiral of panic that prevents me from getting to know them better. I’m also always typing on my phone because of both work and ADHD, which is off-putting, even when I explain that it’s for work. So my mom friends remain at a total of two. Maybe three. People don’t go out of their way to talk to me, get to know me, or ask about my kids — even when their kids are in my kids’ classes.

Then Blaise and 5-year-old August start throwing pinecones at kids because the playground is on the edge of the woods, and this is proper nature behavior to young boys. The kids lose it and tell my kids they are “freaks.” They say they don’t want to play with them. They say they are weird and run away from them if they come near. “Oh great, here come Blaise and August,” I’ve heard them mutter.

You little assholes, I want to say. My kids have impulse-control problems. I can tell them again and again not to throw pinecones, but they will forget and throw pinecones anyway because they are not neurotypical.

Because that’s what Blaise, August, and I have: a neurological disorder. We don’t forget Blaise’s backpack because we’re lazy, lackadaisical, or careless. We forget his backpack because our ADHD prevents us from remembering all the things we’re supposed to be responsible for at any given time, and thank the Lord it’s the backpack that goes, not the baby. I understand that it’s annoying when Blaise leaves his backpack in the classroom, but a gentle word to remind him and some help — “Blaise, don’t forget your backpack” — would do wonders for our lives.

And when it comes to the social stuff, it’s frustrating. If we all had another neurological difference, people would fall over themselves to be aware. They wouldn’t hold my phone habits and other quirks against me. They’d likely be nicer to my kids, accept them for their differences, and realize that they add their own valuable contribution to the culture and community.

Why can’t people understand that kids with ADHD don’t mean to come across as disobedient or overly rambunctious? They have issues with impulse control. (And yes, we are working on it.) And I don’t want to act like a phone-tapping space cadet who can’t remember names. I have a brain disorder that prevents me from recalling simple information about people. 

We simply don’t work the same way as most people, which means we don’t always function the way society expects us to. It’s hard when no one understands that, when they don’t want to get to know me or my boys better.

Why would they? We’re the unorganized, crazy family. When you take ADHD out of the equation, we just look plain antisocial. But they know we have ADHD. So we need some grace. We need some awareness. And more than anything else, we need understanding and support.   

What I Want The People Who Say ‘You Don’t Look Autistic’ To Know

I am writing this so people will understand that autism has no “one look,” and that every individual with autism is affected differently. Autism can affect how people socialize and see the world, and it can affect a person’s sensory processing.

I have Asperger’s syndrome, and I also have ADHD, which affects my attention and makes controlling my behavior difficult. Yet I have come across a number of people who tell me, “Oh, I know someone who has Asperger’s. There is no way you have it,” “Oh, but you don’t look autistic,” or the most patronizing to me, “But you’re grand compared to other people, so don’t worry.” Even after I have explained to people what Asperger’s is, how it affects me and other people and also that there is no “one look,” they still don’t believe me.

When I asked these people what differentiates me from other autistic people they know, they say it comes down to my looks. Yes, my looks — the fact that I wear makeup and dresses the very odd time I get to go out is what makes them not believe me when I tell them I have autism. I have heard from many people who feel their diagnosis is also ignored because of that.

Amy Tracey

I am here to tell people about my experiences with autism in the hopes that they will gain an understanding and a better awareness of this, for me and maybe others on the spectrum with an invisible disability.

I was diagnosed at the age of 20. I developed late as a child. I began to walk and talk before the age of 3, and I had to start school at nearly 6 years of age. I had a horrible time integrating into three of my schools, and teachers noticed I was behind on my reading, writing, spelling, and my social/emotional interaction with my peers. This led them to believe I had dyslexia. They then suggested to my parents, for me to improve my social skills, that I take up an eight-week socialization group in a clinic. Yet they still didn’t think I may have been autistic.

I had problems with my concentration as a child, and I had to be seated away from the window or from anything that may have distracted me. I went to an Irish school for four years and still I couldn’t understand any of the work I was given and had to be given an exception from learning a foreign language. I have never had many friends. I have had to depend on my sister for friends for the most part of my life. I was left out and bullied growing up for being different, hyper, “weird,” “goofy,” “annoying,” “odd,” and so on. This is due to me not being able to understand social norms or interact properly. I also take things literally, which before my diagnoses resulted in people making a show of me.

I was constantly in and out of jobs; no job lasted longer than three months. I would work long hours, overtime, and do the job perfectly. I lasted less than two months in each job, and I was told it was because of my lack of communication, bad eye contact, weird behavior, being awkward, robot-like personality, no facial expression, clumsiness, not knowing how to speak to customers, etc.

I even had the next job after that point out all these things, and one job stated how maybe customer service roles were not for me as I don’t do well with face-to-face interaction. Then I was let go. It felt as if I would do anything to please my boss, and they would look for a reason to get rid of me. This is something I have to slowly work on to improve.

In terms of education, I used to barely pass school and college. I was put into the Leaving Certificate Applied programme, which is intended for people to go straight into a job and is not intended for university. I always wanted to learn and studied hard. I was even awarded five endeavour awards for hard work, yet still was nearly failing the easiest foundation classes. I believed I would never be able to get a degree, and it was like I was stuck this way forever. I wondered why this was happening throughout my entire life, but now I know it’s a part of my autism, which has led me to improve myself and get the right support. Now I am going into my second year of a degree, but this doesn’t mean I don’t still struggle with exams, SA work, classmates, and college itself still. I can only learn how to progress academically over time, and having a special needs reader in exams growing up and even now has really helped.

Autism also affects my sensory processing — how I taste, hear, see. I tend to become irritated with a noise in the distance, and I have to wear ear plugs when I go to sleep or I will lie awake all night distracted by a sound in the other room.

If I’m out in public and I look angry, it is because it’s too bright out, and I’m getting a strain-like feeling in my eyes. If a room is too stuffy, I have to open a window every 10 minutes. Or if a bus is too smelly, I’ll have to get off or the smell will just have a kind of control over me. If I have had the odd night out with people, usually the music will make me leave early, or I’ll sit there hoping the night will end quicker, and that is why I leave early.

Another autistic trait I have is stimming. I can hide my stimming in public, and I tend to do it only at home. One example of this is when I rock side to side when I lie down. It is something I have been doing since I learned how to move as a baby, and it’s my method of escape and calming.

One characteristic people with autism may have is a special interest. We can constantly go on about it. These special interests can change over time. My special interest at the moment is Steve Jobs and Apple. I tend to overly talk about this and the other person can get bored. I do this as I’m not able to start or hold down a conversation and go blank. I know I’ll feel somewhat safer just talking about this, so maybe next time ask me what my special interest is and talk with me about it.

So next time people think I don’t “look” autistic enough, please remember this. There are so many other ways my autism affects me too, but these are just some of the traits and difficulties I face, and there is no “one look” people have. We need understanding from the community that everyone with or without a diagnosis is different.

This post originally appeared on The Mighty.