What It’s Like To Be The Mom Of A School ‘Underachiever’

I log into the school’s online portal to check my 7th grader’s progress report, and it’s like somebody knocked off the first few letters of the alphabet, because there’s not an A or a B – or even a C – in sight. The course roster is populated entirely with Ds and Fs, and I can’t say I’m surprised. Not because my son is stupid or that I don’t have high expectations of him – neither could be further from the truth.

I’m not surprised his grades are in the toilet because I know my son, and I know that school just isn’t his strong suit. Which is why I’m also not that disappointed, because he has much more to offer than his standardized scores reflect. And nobody can see that more clearly than me.

I never expected we’d be at this point, though. When he was little, I figured he’d breeze through each grade. In fact, at one point early on, there was talk of skipping him ahead in school. He read as soon as he could talk, and had a more advanced vocabulary than many adults. He devoured any educational material he could get his hands on, particularly if it involved science. By age three, he could name all the vertebrae in the spine, and tell you anything you’d want to know about carnivorous plants.

If you had asked me back then how he’d be doing in the 7th grade, I’d have anticipated that he’d be at the top of his class, not scraping along by the skin of his teeth and at risk of having to repeat a year (and hopefully only one).

But within a few years of him starting school, ADHD reared its ugly head, and the associated symptoms and behaviors began to outshine his brilliant potential. His inability to focus meant that he spent much of the time distracted and daydreaming, and therefore totally lost; everything went in one ear and out the other, circling through his meandering brain and then slipping away.

Medication worked sometimes, but it didn’t keep his grades from going sharply downhill anyway, and he was yanked from the gifted education program because his dismal test scores “didn’t indicate a need.” It wasn’t so much that he was failing school as that the school was failing him. A classroom setting isn’t the most accommodating place for a kid like my son, even despite the “extra” measures we hoped would help, like letting him sit on an exercise ball in lieu of a chair.

We ended up pulling him from public school and enrolling him in an online school, which has been great in many ways. But no matter what we try, he still just isn’t good at school, and even the change in venue hasn’t magically resulted in an appearance on the honor roll. He trudges through every assignment with the speed and enthusiasm of a donkey being led through quicksand. He spaces out, and when he encounters a test question, it’s like he’s never learned the subject at all.

It’s frustrating for both of us: him, because his teachers are constantly on him to improve, and me, because I know he is somehow, some way, capable of doing better.

But then I watch him tinkering away with his computer, his favorite pastime. At just 12 years old, the kid has a legit side hustle repairing laptops for friends and neighbors – he’ll even make sure all the drivers and software are up-to-date before returning them. He has taught himself multiple programming languages, and it’s like living with the Geek Squad; my husband called him from work the other day to ask how to open a JSON file and ended up getting a detailed tutorial.

The last time I got a phone call from his online teacher, I steeled myself for another chat about his grades. Instead, she spent 15 minutes gushing over the fact that my son had been able to troubleshoot and repair – via code – a connectivity issue that his online class had been having. He even sent her screenshots of exactly what he did.

“I had no idea he was so proficient at computer stuff!” she marveled. But, really, why would she have any idea? School isn’t where his passions lie. All she usually sees is the apathetic slacker who skates by on the barest of bare minimum.

I’d be lying if I said I hadn’t struggled mightily at times with my son’s underachievement in school, especially since my other kids are at the high-achieving end of the academic spectrum. It’s difficult sometimes not to compare. Would I rather him be a straight-A student who adores school? Of course – if only because it would make things easier on him. I know there’s not much joy in being at the bottom of the class.

But I also know that talent does not necessarily equal achievement, especially if school achievement is not where my kid’s talents lie. I know that there’s a drive within him that’s going to motivate him toward things other than algebraic equations and world history. I know that school might be a necessity, at least for now, but that it’s only a page in a much longer story. His road through academia it may be bumpier than most, but that doesn’t mean there aren’t great things on the other side.

So I’ve decided that, rather than stress us both out by harping constantly on his piss-poor performance, I’m going to place less of an emphasis on stellar grades, and focus on developing the things he is good at. I will encourage him to pursue the things he is passionate about – because that’s what’s going to do him the most good. No one is remembered for the grades they got in school anyway, and the greatest gift I can give to my son is to not distill all of his worth and potential into one single, meaningless letter.

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Middle School Can Be Brutal, Especially For My Autistic Son

Hallways lined with rows and rows of colorfully painted lockers. I never knew that something like this would strike such panic and anxiety in my Mama Bear heart.

When I was in middle school, those were some of the best years of my life. My biggest worries were how many Pound Puppies I could collect, or how big I could tease my bangs for my school pictures. I played clarinet in the band, ate French fries almost every day, and folded notes into tiny origami projects before passing them off to friends in the hallway between classes. I was smart, somewhat popular, and had a bunch of friends.

This year my autistic son started junior high. I knew his experience would be nothing like mine. For months, I dreaded the first day of school. I had mini panic attacks, thinking how the hell he would navigate going class to class, bumping his way through the crowded halls of rowdy kids, having multiple teachers who needed to learn his idiosyncrasies. What if he got lost? Would anyone help him? What if he had a meltdown? Would kids make fun of him?

He was a bit of a celebrity at his old elementary school. Teachers loved him and he had a solid group of friends who shared his obsessive interest in Minecraft and Legos. At his sixth-grade graduation, my heart nearly exploded when I heard the cheers from his classmates when his name was announced. But heading into junior high, he no longer had one (loving) teacher for the entire day. And district boundary lines had all his bros headed to a different school.

Toward the end of summer, we had to register him at the new school. There was a sort of assembly line set-up: start in this classroom, go to the next, go to the next, etc. We hadn’t even made it out of the first room without him breaking into tears. He had to log in to his online profile with the school district. He tried accessing a Google drive from the prior school year and was heartbroken to find that he could not. He openly wailed in the room full of students and their parents, as they stared at us blankly, giving us “The Look.”

At twelve years old, my kid has eight pounds and two inches on me. He is a big kid with a big voice and thick, unruly hair. I realize how this must look to the un-autism-acclimated eye. I have gotten “The Look” for years — sometimes mixed with sympathy, maybe even an ounce of understanding. But it is “The Look” nonetheless.

The week before classes started, we had a back-to-school night where we met all the teachers. I stood by nervously as each one introduced themselves to my son. Did they know he was autistic? Was I supposed to tell them? Could they tell on their own? We also got the combination to the locker assigned to him. I knew there was no way in hell he would be able to work the lock. I had him attempt it anyway, hoping maybe I was wrong and he wouldn’t have any problem. The school had a “No Backpack” policy, so it was crucial that we figure out the locker.

He turned the dial to each number, then tried to lift the latch. Nothing. I tried once. Then again. Still couldn’t get the damn thing to budge. If I couldn’t get the locker open, he definitely wouldn’t be able to do it. He was quickly becoming frustrated. To diffuse the outburst I could see bubbling up, I told him we’d just have to figure out something else. The school may not allow backpacks, but there’s no rule against a giant binder… with a strap. Besides, give him a break. He’s autistic.

Halfway through the school year, and he still hasn’t made any good friends. Kids “use inappropriate language” and “they say Minecraft is overrated, which is dumb because their graphics have had a major overhaul.”

Ironically, the only class he struggles in is his social skills class — a class with other autistic kids. His teacher explained that there were two boys who clashed with our son. They were like water and oil, to which our son replied, “And I’m the oil because I’m highly flammable.” Seriously. He said this. And it was hilarious. I’m certainly not clever enough to make this up.

One day at lunch, he dropped his sugar cookie on the floor. He asked the lunch ladies for a new one and they refused (don’t even get me started on this assholery). In a disappointed rage, he dumped his lunch in the trash, sat down against a wall, and cried. Could no one have given him a damn cookie??

I’ve been inside the school on a few other occasions. And each time, those lockers taunt me, mocking me for the “limitations” of my son. A seventh grader who reads on an eleventh-grade level; a kid whose mind is so beautiful, but no one will know because no one will try. A kid who tries so hard to make the numbers work, and just can’t get the locker door to open.

Director Of The Movie ‘A Boy Called Po’ Explains What Autism Is Really Like For A Family

No one can tell the story of A Boy Called Po — the 2016 movie that just became available on Netflix –quite like John Asher can. While he’s the film’s director, producer, and editor, Asher also knows firsthand the complex dynamics of parenting a child with autism. Considering that he is the proud father of an autistic son, Evan, who is now 14, it is not surprising that Asher’s motivations behind the film run deeper than profit and box office success.

“I just wanted my movie to be authentic. I wanted the community to embrace this movie and put their stamp of approval on it. That’s what I care about the most.… I didn’t make the movie to make money. I made the movie to educate people more than anything. So, really, for me, I just want people to see it, and I don’t care how they see it. I just want them to see it.”

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Hope Ahead

When I shared that I, too, have an autistic son, the famous director instantly stepped out from behind the camera and put on his Dad hat. “One of the things that we were fortunate about is that Evan was diagnosed when he was about two-and-a-half or three years old. Early diagnosis is key. I mean, look, there was a time when he was three years old, and I was like, I don’t know if he’s ever going to live by himself. I don’t know if he is going to get taken advantage of. And yet last week, Wednesday, was his first day of high school. No shadow, all by himself. And he’s in special ed classes. But he’s also into mainstream classes. He’s unbelievable. And he’s going to get a frickin’ driver’s license.”

Asher exuded pride for his son, but his tone remained solemn. He wasn’t gloating; he was comforting me. He was remembering that time of limbo. “I just want you to know — I’m telling you — you really have a lot to look forward to.” I was grateful for the handful of hope that he passed on to me.

Digesting A Diagnosis

Since I’d only recently received my son’s official diagnosis, I asked Asher about his introduction to autism. “I remember when my son was diagnosed. It was really interesting how it happened. We went to see a doctor at UCLA. He was just watching Evan in a room. He gave him a bunch of miniature hazard cones, the little yellow cones, and Evan started stacking them up and making sure they were perfectly lined up. He put his eye up to the table and they were all actually perfectly spaced apart. I remember [my wife] Jenny saying, ‘Does my son have autism?’ and the doctor looked at her and said, ‘What do you think?’ She just burst into tears.”

While I firmly believe that the saying, “If you’ve met one person with autism, you’ve met one person with autism,” is true, I’m not so sure I can say the same about the parents of autistic children. I may not know Asher or his wife personally, but I do know how they felt in that moment. I’ve seen my share of stacking and eye-tracking.

My heart went out to them both as I listened. In the movie, seeing Po’s father walk the same path that I clumsily navigate on a daily basis made me feel less alone as a special needs parent. The director had already succeeded in comforting me as a viewer. Now, in real life, he had done the same service for me as a parent.

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Coping With Conflict

My interview questions now tossed aside, I confessed the challenges I’ve been facing as a newbie special needs mom. True to character, I began to overshare, telling Asher how autism affects so much more than our children—it affects our relationships, our marriages, our jobs, everything.

He knew. Of course, he knew. A Boy Called Po confronts practically every obstacle I have faced as the mother of an autistic child. I wanted to know what personal aspects of fathering an autistic son he incorporated into his film.

Asher told me about a specific scene in which Christopher Gorham’s character, David, just loses it. I knew the scene; how could I forget it? I faced my own demons as I watched it; half of me wanting to protect Po, the other half filled with compassion and understanding for David and the frustration he felt. I asked him if he believes that the challenges are different for special needs fathers than they are for special needs mothers, and if so, how.

Clearly cognizant of the question’s controversial undertone, Asher continued to keep it real. “My opinion is that, sometimes, men feel the need to appear as if everything is okay. That it’s alright. Our job is to make our wives feel like, ‘look everything’s fine,’ right? I may have done that to a fault because I think that Jenny got frustrated, and she was like, you know, how can you say that everything is alright? I was positive, and look, everything is fine, but it’s bad. I mean, the divorce rate for autism parents is what, eighty-five percent, ninety percent?”

I replied that those statistics did not surprise me one bit and we both laughed. Looking back now, I’m not sure I can explain what exactly was funny in that moment.

The Marriage Toll

I confessed to Asher that my marriage was no stranger to conflicting coping mechanisms. If it weren’t for the countless messages I receive from fellow special needs moms who feel the exact same way, I’m not sure I’d be sharing it here. But I know I’m not alone. So many women have shared with me that they feel as though their partners just don’t get it. They don’t see.

Asher quickly jumped in to clarify. “We do see it. We do see it. But look, a man would never tell you he is having a heart attack. He would sooner go in the bathroom and die quietly. We wouldn’t tell you because we’re not designed that way.”

Of course, Asher and I both acknowledged that not all men operate this way. Yet, the fact remains that many marriages suffer as one parent remains positive, walking ahead with a spring in their step, while the other, lugging the heavy baggage of both their realities, struggles to keep up. Or so I’ve heard.

Asher stayed true to form, and continued to offer me his genuine support. “Can I give you one piece of advice? Communicate. When you go to sleep at night, it’s okay to say you’re scared. I wish I had said that to her more. I wish I admitted that I was scared because there’s comfort in the other person. I just kept saying, everything’s going to be fine.”

Going It Alone

Perhaps it’s no coincidence that in A Boy Called Po, David also struggles to admit his powerlessness as the father of an autistic son. The film confronts the uniquely heavy burden that a special needs parent inherits when they lose their partner. Whether it is due to a loss like in the film, or the result of a divorce, I asked Asher how one person attempts to carry this weight alone.

“You know, I think my thing is to not lose hope. You think the world is crumbling around you, and you just don’t realize that you have this beautiful gift right in front of you, which is your child. And it’s not to give up on your child. Not to be scared.”

A Father First

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Autism parent to autism parent, Asher talked with me far longer than I could have expected. This time the guy behind the camera is also the guy at occupational therapy. He knows the appointments and insurance policies. He knows the worrying and denial. He knows the fierce struggle and even fiercer bond. He might even know a little bit about your marriage.

We covered it all, and we were left with the same question that every conversation about autism ends with. What do we do about it? We already know we can’t change autism. But we can show people what it really looks like.

I asked Asher, as a father, how he hopes A Boy Called Po can effect change.

“I hope that the autism community watches this film so that they can show it to their not autistic or neurotypical friends and say, ‘If you want to come into my life, look at this movie.’ Because that’s really what it’s designed to do. The movie is entertaining. It’s magical. It makes you laugh; it makes you cry. That’s the design of it. The design is toward the typical families. So that they can watch this movie and say, ‘Oh, that’s what my friend is going through!’ They look at us with these blank faces. They’re like, ‘Oh, that must be so hard. So sorry for you.’ They don’t know what we are going through. Take this film and show it to your friends. If you have autism in your life, show this film to your friends and they will understand what you are going through.”

netflix.com

A Boy Called Po is now available on Netflix.

Previously published on AutismAwareness.com

Transitioning To School Is Stressful AF For Parents Too

Our kiddo started kindergarten this year. One word sums it up: Overwhelmed.

This process has involved a trajectory of emotion. Anxiety, excitement, fear, joy, relief, anticipation—you name it, I felt it.

All we wanted was for him to get into our local, alternative, lottery-based elementary school. If he could just get in there, everything would be okay. So, maybe we don’t fit in. So, maybe it doesn’t work with our full-time work schedules (i.e., lots and lots and lots of parent involvement during the school day, which runs from 8:30-12:30 — WTF is that?).

None of that mattered. I was willing do anything to get him into this school. After a few grey hairs and many more stress pounds, it all fell into place. I told myself I’d quit my job and eat canned soup and Wonder bread, if necessary. (No, I wouldn’t. But I still feel compelled to write it like maybe I would do that.)

So, why this school?

Every student has a right to be included. For my son who has ADHD and is on the spectrum for autism disorder, that’s all that matters. This is a school where his differences don’t marginalize him, but are appreciated. Where they don’t try to squash his personality and character, but instead guide him on the path and give him the tools that make the most sense for him. This right to inclusion is so core to this school’s values that it’s in the students’ bill of rights.

That’s right, people. Everyone at this school has a right to be included, and it’s their number one rule.

Bullies. Creeps. Those assholes are out there. And I know, I know, I know that growth comes from pain. I hate it. But it’s inevitable. Still, there will be plenty of time for “othering” and “marginalization” in middle and high school so I’m hoping to stave that off at least until then so he can gain a firm understanding of self-worth. That way, he can learn how to build real, long-term friendships and learn to brush off the soul-crushing naysayers.

And then the stars aligned. Magic happened. We got in. The Tuesday before school started.

So, now we’re at this amazing, alternative, lottery-based elementary school. It’s what we wanted. The perfect school for him. And we are so fucking overwhelmed. Kindergarten is no joke, you guys. It’s hard. I have to actually show up on time or risk signing him in at the office as tardy, which is poo-pooed. Then I have to pick him up a mere four hours later. I have to go to parent meetings and potlucks and auctions and help raise funds for the school. There are monthly field trips and performances and required weekend positive discipline trainings.

Then there’s the requirement of either volunteering in the classroom four hours per week or owning one job and volunteering in the classroom two hours per week. This one is brutal. How do other parents do this and not get fired—what is their secret? I thought about outsourcing it and hiring someone, but I get the impression that’s not cool. And I’m not made of money. So, I took on the only remaining job: field trip coordinator. It’s a choice I regret. But it was the only job left and there’s no way I can swing working full time and four hours per week in the classroom. So, now I herd cats. It sucks.

And then there are the emails. Oh. My. God. So many emails. The latest is a string of emails about Captain Underpants and the devastating developmental consequences it will surely have on these young minds. It started with a parent inviting others to go and watch it together at the local basketball stadium. And then it quickly morphed into a lecture of shame about why it’s inappropriate. Everyone wears their conflict resolution hats and says things like, “I respectfully disagree” and “I honor your opinion, but I would never let my kids…”

Lots of polite fights. After twenty “reply all” emails of respectful feedback that everyone and their mother insists on sharing, there are a gazillion other “reply all” email strings simultaneously flooding my inbox.

If Captain Underpants is inappropriate, then I can assume Jurassic World will not go over well. I’m so busted. Mother of the year over here, guys. Just saying.

Working mom, interrupted. But it’s worth it.

Look, at the end of the day, kindergarten is stressful, but it actually is worth it. I’ll complain a lot about the endless emails and the required participation because I’m a “venter” and I have to let it out. But it’s because of these annoying requirements that this school is so, so, so good. If it weren’t required, I wouldn’t participate because it does take a lot of time. And I’m only one of hundreds of parents in that situation. Now I need to suck it up, put on my big girl pants, and lend a fucking hand. That’s how we make sure our son is in a loving environment that fosters a future social justice warrior.

As we move into 2018, I’ve stopped beating myself up and I see that the other parents are human just like me. They’re well-intentioned and kind and imperfect. And the teachers are friggin’ awesome—they do everything in their power to positively influence our kids, and that includes accepting and celebrating my son.

I recognize how fortunate we are. I can’t imagine a better school for our kiddo. He is happy and he’s actually thriving. He even made his very first friend, which is huge. It’s a lot of work, but his gorgeous smile—which we see more and more these days—makes it all worth it.

Thank god for schools like his. I’ll vent and complain, but I wouldn’t send him anywhere else. Just don’t tell anyone that we let him watch Jurassic World.

There’s No Such Thing As ‘Too Social’ For Autism

We have been blessed with two daughters on the autistic spectrum who have pretty opposite struggles when it comes to socialization.

For many years before Sno was diagnosed, I was told she was “just shy” or “very serious.” She would often struggle in large groups, noisy crowds would scare her, and she has always taken a while to warm to new people. She’s definitely regarded as an introvert and isn’t really affectionate at all. But when she is – it’s heart-meltingly gorgeous.

Sno has always struggled with forming friendships, and I remember her at the age of 4, two years before she was diagnosed, coming home from kindergarten confused about why one of her peers wanted to hold her hand during a song they were singing. When I asked why she didn’t want to, she simply told me, “Well because I don’t know her. And if I don’t know her well, I don’t want her touching me.” Fair enough, kid, I thought.

Her sister Wilding, on the other hand, is a completely different kettle of fish. I was told before she was diagnosed with ASD that she couldn’t be autistic because she was “too social” to have autism. She loves people, and would regularly run up to strangers at the library and ask them to read her stories. She is super affectionate and adores cuddling. She makes friends easily and is loved and cherished by many simply for her embracing, warm character.

Two girls so opposite in personalities and yet they both are autistic. How is this possible? I’ll tell you how.

Being an introvert or an extrovert has nothing to do with being autistic.

It’s kinda like being right- or left-handed. While Sno has struggles with forming friendships mainly because of the how/when/why, Wilding struggles to understand appropriate social conduct and behavior and respect for others’ personal space. In Sno’s eyes, it seems there are so many grey areas of friendships, which she finds overwhelming and confusing with lots of rules to follow she doesn’t quite grasp; but Wilding doesn’t yet understand that you can’t just rock up to a stranger and sit in their lap because you think they look nice.

There are so many tasks in daily life that neurotypical people do without even thinking or putting in much of a concerted effort to achieve. Situations like understanding what to say to someone who may be feeling sad, how to comfort someone who isn’t feeling well, how to make a new friend, or what to say to someone when they pay you a compliment. For some people, these tasks require a lot of effort and forethought, and this can be pretty daunting.

Teaching appropriate social conduct can be tricky and requires patience. With Sno it often helps to do “comic strip conversations” to break down social situations and enable her to see what others may be feeling. I have also found these books to be helpful for Sno because they help simplify stuff and give her tools she can add to her toolbox and use when she feels the need.

We work with Wilding on learning about emotions and facial expressions and thinking about how what we say might make someone else feel. Daniel Tiger’s Neighborhood is also fantastic because the episodes are essentially broken down social stories explaining different things ranging from eating, getting dressed, going out and feeling sad. Oh, and Daniel Tiger also has a terrific app which explores feelings, too.

This book helped Wilding grasp the concept of personal space. And hula hoops provide a great clear visual of what personal space looks like. We use them a lot when we eat outside.

Being “shy” or “outgoing” are not the defining factors of autism. People on the spectrum can be both. If only people were aware of just how wrong these myths surrounding being autistic were.

We see you, girls. Or I do, anyway. And I think you’re pretty incredible.

Why This Woman’s Unexpected Words In The Walmart Parking Lot Were So Important

What I learned from a stranger one summer’s day in a Walmart parking lot still sticks with me six years later.

I had on occasion witnessed parents with children having meltdowns out in public and thought I’m glad that’s not me. I would try not to look and give them some privacy to help their child. I would move on with my shopping, happy my three children were behaving, or at least not throwing a “tantrum.”

Then I had my fourth child. With all the love and joy he brought me, also came challenges. By the age of 2 he had been diagnosed with sensory processing disorder and autism spectrum disorder. I became the parent of the child having meltdowns.

When my son was 4 years old, I had to take him with me to Walmart one day. I knew I was pushing my luck. We had just come from the dentist, which for any 4-year-old kid can be difficult but for a child on the spectrum, it is a lot of sensory processing to have to deal with. My son had done OK. We had made it through the dentist appointment. Just one more stop at Walmart, then we would be home.

Things did not go as planned. My son started to have a meltdown in the checkout line.  Normally if this happened I would have made a quick exit from the store and gone back another time. But I couldn’t do that today. My husband was picking up my daughter from camp six hours away. She had broken her foot badly, was in a non-weight bearing cast with crutches, and the cast was not waterproof. The one thing my daughter really wanted to do the minute she got home was shower, and it was my job to get the supplies. I needed to get her a chair that could fit in our shower and plastic and tape to cover the cast.

I endured the looks of disapproving people as I slowly inched up in line as my son was on the floor between me and the shopping cart screaming at the top of his lungs. I made it through the checkout and was able to pick up my son and get out the door. The screaming and flailing continued as I tried to walk to my car. His shoe came off at some point, and I left it in the middle of the road. I just had to get him in his car seat.

My son had Herculean strength during this meltdown. His little body was arching and twisting, and as hard as I tried to calm him and just get him buckled in the car seat, I couldn’t do it. He was screaming, and I was struggling, minivan door wide open for all to see.

That’s when I saw this women coming towards me from across the parking lot. I was sure she was going to tell me she had called the police or at least tell me what a horrible mom I was. But instead she simply asked if she could help me. As I felt the tears well up in my eyes I said yes.

It took the two of us five minutes to get my son buckled in the car seat. As we were struggling together, she asked so politely if my son was on the spectrum. I replied, “Yes.” She told me how she too has two boys on the spectrum. She had been in another checkout line, but had witnessed the meltdown in the store. She told me a man behind her in line had said, “What that kid needs is a good spanking.” She told me it made her so mad that she turned and told the man, “ You have no right to judge them. That boy could have issues you don’t know about.”

I was thinking to myself, Wow not only is this women helping me, but she is defending me! She continued on to say that she told her husband, who was waiting in their car with her two boys, that she was going to come over and help me because she could just tell my son was on the spectrum and that I was going to need help.

After we had secured my son in his car seat, she helped put my items in the back of my car as I went to retrieve my son’s shoe. She ran back to her car and came back to my car with her name and phone number. She told me to call her if I ever wanted to get together with her sons. I thanked her profusely, and we went our separate ways.

She became “Melissa-Walmart” in my address book. We met a few weeks later at a playground and laughed as I told her I’d still be in the Walmart parking lot if she hadn’t come over to help me. Her kindness that summer day has stayed with me.

I learned that for all the hurtful looks and comments I would get over the years, there were also people out there who understood the challenges we faced. For the times I saw other parents with a child melting down and I just looked the other way, I could do better. I, too, could ask if they needed help. Empathy and compassion can go a long way for everyone because you just never know what someone is going through till you have walked in their shoes — especially the shoes that end up in the middle of the road.

Originally published on The Mighty.

What I Want My Child With Autism To Know

My sweet boy,

I’m writing you this letter I know you will most likely never read, mainly because I will probably hide it from you. I have a lot I want to tell you, but with you only being 7, I feel like this may be too much for you so I will let the public read it instead.

There are things that, if I had the power, I would change to make your life better. But my job isn’t to change the past, but to make your present and future the best that I can.

I can only imagine the struggles you endure in silence every day. I will never know the extent of your confusion or how your brain processes stimuli. I will never understand why you are stimming constantly for days in a row and then nothing for weeks. I feel so helpless when I know that you’re going through something, but I don’t know how to help you. I try so hard to try to put myself in your shoes, but there is no way to know how you feel until you are able to communicate with me about it.

I have seen when kids have taunted you or made fun of you, and it infuriates me. I try to educate these kids that you will grow up with to try to get them aware and be supportive of you. I hope and pray that you don’t hear their criticisms. You are the happiest kid in the world, and I’ll be damned if the opinions of others, especially kids that are supposed to be your friends ruin your outlook on life. Just last week I had to explain to a boy why you talked “funny” because I saw him mocking you.  You, of course, didn’t notice, but I did and it broke my heart. After I talked to him about it, I had to hold in my tears and frustration until we were in the car. I try to not cry in front of you about these situations, but sometimes mama’s shield of toughness doesn’t do its damn job.

It’s been me and you since you were one. I’m sorry that your dad isn’t around.  I’m sorry that you weren’t lucky enough to have one of those great dads. I’m sorry that it took me months to explain to you that you didn’t have a dad, because you started to notice that other kids had something that you didn’t. But you know what? We are doing just fine on our own.  We have each other and you have the best Nana in the world.

I’m sorry that we have to fight about you eating. Kid, I know you would love to live off of chips and M&M’s, but that’s not cool with me. I make you drink your meal replacements drinks because I love you, and you need to stay healthy. So let’s not fight about that anymore. I think one day you will realize that I’m the “boss.” (Probably not.)

I absolutely love you, but sometimes I hate autism. I hate the struggles that you have to endure in silence. I hate the constant worry. I hate the fact that I want the best life for you but that I have to fight for services to help you. I mostly hate the uninformed population that judge you based off of one meltdown in public. Screw you judgmental people. I’m not in the mood for you.

You are a strong, resilient boy, and you amaze me daily. You are very stubborn (which you get from me), and we have our moments of who has the higher ground, but, Jaxon, you have my whole heart and nothing will ever change the way I look at you in awe.

Love you,

Mama

What Parenting A Child On ADHD Medication Is Really Like

Mamas, on this subject we must stop the relentless back-biting and judgmental behavior and unite to encourage each other. If you parent a child with special needs, whatever those needs might be, we are fighting a battle behind the doors of our homes. Some of us may have children who scream and yell, throw things, are non-verbal, who curse at us, or who cannot dress themselves; whatever our individual war, it is war nonetheless.

So, suit up and march on beside each other because choosing to medicate your child may be one of the most difficult and unforgiving parenting decisions you will ever make, so you’ll likely need backup, not judgment.

The daily grind of raising an extreme child, whether medicated or not, is a rough journey. This is a glimpse at the road traveled by those of us who have chosen medication.

The Pharmacy Is Your Nemesis

If you have never had a child on the type of medication that requires you hand an actual paper prescription note to a pharmacist (yes this still exists), then you will never know the defeat that can come at the hands of your neighborhood pharmacy.

Because of the classification of medicine our son takes, his prescriptions cannot be refilled more than one day before they are empty. They can also not be filled at just any pharmacy if we are traveling. This means, since our families live hours away from us, that when my son visited his grandparents for a week last summer, we couldn’t fill his prescription early even knowing it would run out while he was there. It literally took over 6 hours of phone calls to multiple pharmacies and insurance companies before we found somewhere we could get his medication. Six. Hours.

The pharmacy will likely also be conveniently out of the medication or dosage that your child requires on the exact date that you need to refill it. This can sometimes take days–even weeks to special order. This translates to having to parent a child who suffers from Mach 5 Meltdowns and has almost no physical ability to focus or control his outbursts when he is unmedicated for an unknown amount of days. But we must follow pharmacy protocol and wait. So our child has to come down off of the medicine he has taken for months, suffer the effects of being unmedicated, as well as what his/her brain is already like without the assistance of the meds and then, when the days pass and the medicine is finally ready at the pharmacy, we start all over again.

Moms who parent children on behavior disorder medications seriously dread the pharmacy. I would honestly rather go to the eye doctor, the dentist, and the gynecologist ALL in the SAME day if it means I could just happily pick up my prescriptions without fail like the next diabetic or person who needs an antibiotic. It is maddening!

Haters Gon’ Hate

The school will judge you, your parents will judge you, your friends may even judge you, but at the end of the day, no one knows your child like you do. If your child struggles with behavior disorders, you may as well pull up your bootstraps and brace yourself because, sister, it’s gonna get messy.

Parenting any child is a rough and dirty job, not meant for just anyone. Raising a child whose brain tells them the logical response to not getting to watch 10 more minutes of Moana is to throw themselves in the floor in a fit of uncontrollable rage is next level parenting. We don’t have time to be bothered by the opinions of the mother behind us in the drop-off line at school any more than we do the thoughts of our own family…and trust me, they will be plentiful. We must be strong and remind ourselves that we know that our child uses this medication for the appropriate reasons and she is a better functioning person because of them, no matter how much Aunt Sally swears, “ADHD is just an excuse for poor parents to medicate their kids into zombies.”

Believe me, we wish Aunt Sallie was right, but she’s not. We have cried over this choice, prayed over it, researched it, and everything else you could think of before deciding to accept the prescription. But, again, you know your babies. If what they need is assistance to focus or something to calm anxieties beyond their body’s control, those are the choices we make as parents. Let other people reserve their opinions for their own children.

Medication Works For Those Who Need It

Unfortunately, Aunt Sally’s estimation of medicating children is true of some parents. It is because of this lack of parenting skill that those of us making the difficult decision to give our child medication for behavior disorders fall victim to the harsh criticism of others. However, as a former member of the “I would never medicate my child” club, I can attest to the fact that some people are just unaware of what our daily lives look like.

Before medication, our son (diagnosed ADHD, GAD, SPD, and ODD) literally never stopped. He could not do his school work, watch a TV show, or complete a simple task without constant redirection or consequences. He hit and kicked, spit on and punched my husband and I, and dented our walls with things he would throw at us or down our stairs. He once tried to bust out our kitchen window with his shoe because he couldn’t get it tied but refused our help.

After trying every whole food, essential oil, natural approach before medication and watching them all fail, one by one, we agreed to try our son on the lowest dose of prescription meds. Since making this tearful decision, we have a different kid. He still has his moments, but he is able to participate in organized sports, be successful in school, and make playground friends–something he’d never accomplished before medication.

When The Meds Wear Off, So Can Your Sanity

We don’t want our son to lose his personality behind doses of medicine. We want him to run, climb, yell and laugh loudly. We want him to make messes and do crazy things because that is who he is — medication or not. But it should be noted that, while his medicine is a necessary assistant to him focusing during the day, before bed and in the morning are the times we dread the most as his parents.

Every morning, our son wakes up like a bullet shot out of a gun. Before the sun rises, he is bounding up the stairs toward our bedroom, convinced he is being completely silent. By 7:00am, we have likely endured refusal to help with his household responsibilities, yelling over simple tasks like getting dressed, and usually an all-out fit in the floor where one of us is given some glamorous parenting title like “Worst Mama Ever” or “Daddy Doo Doo Pants.” Be jealous.

All that said, once the medicine begins to do its job, our son becomes the best version of himself. He usually apologizes once he comes back to his body and realizes what he has done or said. He is able to calmly eat breakfast and get ready for his school day. Again, people outside of our circle have no clue what daily life is like without medication…even if that is only a few painful, agonizing hours. We had to ultimately make the best decision for the good of our family as a whole and the success for our son.

The Meds They Keep On Changin’

One of the most frustrating things that can happen when choosing to medicate your children is that many are very sensitive to medical ingredients and the dosages must constantly be adjusted. This means an ever-present balance of upping one med one week and then observing for two weeks; decreasing this dose to offset one side effect only to incur another. Then we start all over.

The dance with doctors, specialists, therapists, and medication is a delicate one. Being faced with the decision to put your child on medication is one parents who have been through wouldn’t wish on anyone. The amount of things that are beyond your control is immeasurable. And the judgment is thick.

Navigating your way through the treacherous routes of parenting can seem impossible. This is a world where we need each other daily, sometimes minute by minute. Choosing to take medication can be tricky, even as adults. Raising our incredibly intelligent, creative, and sometimes absolutely unhinged kids can be both our prison and our passion. We don’t all have to agree on this topic of medication, but we should be able to encourage and lift each other up. The old adage “It takes a village” could not be more true. Find your tribe. Embrace your inner circle. Those are your people and you need them as much as they need you.

This Is What Scares Me Most About School Lockdown Drills And My Autistic Son

Once a month like clockwork, I receive a text from my son’s school that they have performed their monthly lockdown drill. This text is to inform me that it is just a drill, and I have no need to be concerned.

But I am concerned. This is just another reminder of how much my son’s autism impacts every part of his life. I am scared shitless because I don’t think he will be protected and safe during a lockdown procedure, and it’s by his own doing.

You see, you hear about teachers ushering their students into a closet or restroom—all sitting silently side by side. You know what my Kiddo is doing during this? Talking—telling the teachers, staff and students that there is going to be a surprise. A combination of my son’s autism and innocence makes him think they are playing a game of hide-and-seek, or that it’s a surprise party and they are going to have fun. He loud-whispers to everyone around him to “Be quiet!” while not picking up on the fact that he himself needs to be quiet in order to save his own life and the lives of others.

And I hate it. I hate that this is part of his educational experience. I hate that autism and his communication and intellectual issues might be yet another safety risk in his life and the lives of those around him. If Kiddo makes a noise, he jeopardizes every person in the classroom closet with him. He won’t mean to do so, but it is the reality of the situation.

My heart broke when his teacher first told me about this. She didn’t seem too fazed by it, and from what I can tell, he’s not the only kid in class who does this. He just has no concept of the situation and no idea that this is a drill about saving his own skin. I was told it was a skill they would work on.

Part of me is angry that this even has to be in my Kiddo’s life. Like what-the-ever-loving fuck is this? Don’t we have enough on our plates? Now I have this concern to worry about as well—that he will potentially give away a hiding spot to those looking to do harm to himself and others. I thought working on life skills meant learning how to live independently, but now they include trying to stay alive.

I hope to hell that I will never even have to think this could be a reality, but I can’t help thinking about it when that text message announcement comes through my phone once a month.

I don’t have a solution. I don’t even have a suggestion. It’s just another complication involved with autism and one that you never even think about it until it’s in front of you.


Scary Mommies: It’s up to us. Together, WE CAN DO THIS. Please join us in taking a stand against gun violence and fighting for a safer country for our children. Learn ways to make a difference at everytown.org.

A Christmas Letter For Kids With Autism, From A Santa With Autism

To all the children with autism around the world,

Hi kids, Santa here! I’m writing to you from the North Pole to tell you how excited we are that Christmas is coming! My elves are hard at work making toys, and the reindeer have been preparing for our long trip around the world. I’ve noticed my naughty list is much lighter this year, so I’m sure you have earned a spot on my nice list.

The elves and I are writing to you today to let you know we understand how the holidays can be tough sometimes, especially when it comes to meeting me. Malls can be loud, the crowds can be pushy, and it can be an overwhelming experience. How do I know so much about this? Well, I’ll let you in on a little secret…

I have autism, just like you.

When I was younger, the wind blowing in to bring snow for my sleigh to land on made my head spin. The elves practiced carols and sang out to spread Christmas joy, but the loud volume and pitches of their voices made me want to hide under Mrs. Claus’s apron. Whenever the reindeer played their reindeer games, all of the hustle, bustle and excitement overwhelmed me, and I would need to lie down and relax. Even when I would go to malls to see other lovely children, like you, I would feel out of place during the holiday season and never really know why.

As I got older, with the help of my elf family, reindeer friends and, of course, Mrs. Claus, I became more and more comfortable in all of these situations. Sometimes I still have a hard time with these things, and that is OK!

Thanks to all of the support we’ve had through the years, the elves and I have decided we are prepared to bring a little bit of our North Pole Christmas cheer directly to you! You see, because of my younger days, I’m now going to help host an autism-friendly day for you all to enjoy! My elves will teach you all the songs they practiced, on the quieter side just for your ears. The elves are also going to show you how they do arts and crafts, North Pole-style. And finally (and this is my favorite part), you and I will take a picture together so we can both remember how much fun we had celebrating Christmas.

The elves and I are so excited to meet all of you in person. I can only hope we will be able to host more autism-friendly events for all the children with autism around the world. Wishing all of you a Merry Christmas and a Happy New Year!

Happy Holidays,

Santa

This post originally appeared on The Mighty.