Sweet Signs of Empathy (Autism)

Facebook shares memories of our posts from the past. Today it reminded me of a post I made in 2013 when my autistic son was 4 years old. The post was made only a month after we moved 900 miles from our old home in Tennessee. My son was still adjusting to his new school, but most of his fears were carried over from the school he had just left. He was afraid of the sound of whistles at recess. He was afraid of an alphabet video his teacher played during snack. Every morning was a struggle to get him to go to school because these fears were all-encompassing. He couldn’t see past them to the fun he would have. His teachers knew of these fears and took measures to not blow the whistle or play the video, but my son was still afraid. So every morning I said the same reassuring words to calm him.

On the day of the Facebook post, I had had something bad happen. I don’t remember what it was, but it had to have been bad because I was crying. I seldom get pushed to that point these days. But there I was lying in bed, crying to the point of sobbing. My son climbed onto the bed with me and pulled the blankets up so he could get under. For a while, he just stayed very still and looked at me. I probably looked strange to him with my face and eyes all red and wet from crying.

He never was one to stare, so I let him for as long as he needed to. As it turns out, he was trying to think of a way to help me stop crying. He put his hands on my face and told me the exact words I told him every morning when he didn’t want to go to school. Then he asked me to tell it back to him. We took turns saying it until we both were giggling.

“They will NOT blow the whistle today. They will NOT play the video you don’t like. They just WILL NOT do it.”

It was an amazing moment in our journey. Never believe that autistic kids do not have empathy.

 

I’m Writing an Autistic, Gender Nonconforming Character

I frequently put off writing my work-in-progress. I began writing this novel during the summer of 2015. I took a break at the end of October and wrote a completely separate Christmas novelette, which I had published by the first of December. So it isn’t that I have writer’s block. It’s that This Project is ominous. This Project is both extremely needed and extremely likely to upset someone(s).

I am writing this blog post now in hopes that airing my concerns, which for the longest time I remained in denial about, will finally set them free and out of my head. Hopefully, I can write this and move forward with my work.

The hangup is this: an important character, though not the main character, is a gender nonconforming autistic teenage boy. I do not know the specifics of how he feels about his gender because I have only now (as of yesterday) introduced him. I have put off writing about him for months because of how problematic his existence is likely to be.

There are many ways a person can be gender nonconforming. There are many words to use to describe a person as they appear and as they see themselves. There are also many words to avoid at all costs. I want to allow this character to define himself as the story unfolds, even for me as the author.

But here is the problem: gender nonconforming characters are rare. Representation in fiction is rare. There are a thousand different ways to present oneself within transgender, genderfluid, genderqueer, and other communities. Some desire bodily changes. Some desire appearance changes. Some see the world as the problem because society has mis-defined gender in the first place. These beliefs fall along a spectrum of degrees and not every person in these communities believe the same way.

To sum up my concern: I cannot write about a gender nonconforming person and have them represent an entire complex group of people.

Multiply this by 2 because the same thing applies about this character being autistic. There are thousands of ways to be autistic because autism is a spectrum disorder (even the word disorder is objectionable to some). My character is only being his own autistic and is not trying to be a poster boy for all of autism.

When writing a character who falls into an underrepresented category, people unfamiliar with such groups tend to think that character is, in fact, a poster boy. Look at what has happened with Rain Man. It isn’t that Dustin Hoffman did a terrible job acting his part. It’s that people assume every autistic person is like Dustin Hoffman’s role in the movie. Nothing could be further from the truth.

Every person who does not act in a way that is socially accepted for their birth-assigned gender *will not* fit into the same box and that shouldn’t even be expected. Why is there a box?

Every person who is autistic *is not* the same. They do not have the same struggles, strengths, or coping mechanisms.

So, why am I writing this character at all if it’s so difficult?  If this character was real, he would likely be very misunderstood by the general population. And even within the groups he would most identify with, there would be people not quite believing him. Okay… so maybe they would believe him, but would they believe *me* as I tell his story? That is what I don’t know.

I have an autistic son, but not an autistic teen. I care about autistic representation in fiction, but I am not writing about my son. This character is his own person and no one I know in real life.

I know well a number of gender nonconforming teenagers. I care about how this subject is represented in fiction, but I am not writing about the teenagers I know, nor am I writing *for* the teenagers I know. This character is his own person and this story comes from within me.

Not to imply that real life humans have not informed me about who this character is. I have listened to many people’s grievances about how they are misjudged and stereotyped. I have thought about these problems on a very personal level because of the people in my life. I do not want to do harm to any community by the way my character is represented to a mainstream audience.

It’s a fine line, one I feel confident I can figure out how to walk. It is important to me that I do figure it out. But, it is also terrifying because I know, beyond a shadow of a doubt, that someone(s) will feel I did an injustice in the way I created this character. He will be picked apart no matter what.

And that is why I struggle to make myself write him into life. And maybe this speaks to why many other authors simply write cookie-cutter characters instead of risking having their characters unintentionally speak for entire groups of people.

I am not perfect.

My character is not you.

I love my character.

I love you.

And I hope some good comes of it all.

Teaching Autistic Kids about Consent

My autistic son wasn’t always affectionate. As a baby, he pulled away from embraces. Looking back, I am sure there were many times I stopped breastfeeding him because I thought his turning away or crying meant he didn’t want milk. There are many, many things I misinterpreted before his diagnosis. Because of that, even today when he is 7 years old, I try really hard not to prematurely assume things about his behavior.

As a toddler, my son became much more affectionate. He liked the deep pressure he felt from hugs. He liked to drape himself over my lap and roll around. I knew he wasn’t just doing it because he loved me, but also because it served a sensory purpose. But I valued it anyway.

Now, my son is still very affectionate, but expresses much more love for us while being that way. He crawls in bed with me in the morning and rolls up in the blanket as tight as he can get it, scoots really close, and then presses his feet against my thigh, or bends his knees and presses them on my hip.

His way of expressing affection looks something like this:

“Oh, Baby bird,” He’ll say in a high pitched voice, “You are so cuuute!” He will hug whatever body part is near him, my waist or my arm or my leg or my face, and squeeze tightly (sometimes suffocatingly). “Whee!” He will say and take my long strands of hair in his hands and cross them in front of my face so that if I speak to him I will immediately have my own hair shoved in my mouth. “You are sooooo cute, Baby bird. You are just a delicate flower!”

It’s kind of like torture love. Still, I am incredibly thankful for every single word and every single (excessive) embrace.

But I have recently become aware that it is time to set boundaries. I know my son is completely innocent in his motivation. I know my son is still years behind with his social skills. I know my son has a valid excuse for not acting as his peers in regard to displays of affection. I am in no way saying that his actions should not be viewed through the lens of autism.

But he can’t kiss people. He can’t go to school and embrace his peers and kiss them because he loves them. That might be okay at age 3. It’s not okay at age 7, autistic or not.

I happen to be quite firm in my belief that everyone should be taught to respect consent. You might have noticed from my other blog posts that I am very concerned about the effects of sexual abuse and assault. I incorporated this concern into my parenting by personally asking permission before kissing my kids and allowing them to request physical space, even in an argument, if they think we are standing too close. I have done this with my son especially.

“Can I kiss your cheek?” I’ll ask.

My son will nod or he may tell me no. I respect his answer.

But now the roles are reversed. My son has a new found joy in kissing. It is absolutely a sensory thing. It is absolutely fueled by his autism. I am not faulting him for this. But, I have to address it.

Personally, I don’t mind it so much because I know it *is* sensory. But will everyone know this? No, absolutely not. No one except his family will permit it. That is reason enough to take on the challenge of teaching him about personal space. But in addition to people not accepting that behavior, there are also people who will be triggered by it because they have been abused. Even scarier, this behavior makes children easier to victimize.

Here are the actions I have taken and the rules I’ve established. We will see in the coming weeks what effect this has:

  1. Define personal space and explain why it’s important to respect it with everyone. Let him hear me use the phrase “personal space” where it applies in other conversations, such as when disciplining his sisters for fighting or roughhousing.
  2. Rule: “Ask first before hugging or kissing.” As badly as I want his hugs and as much as I do *not* want to push him away, I do it anyway and make him ask first. I do not expect this to deter him from hugging or kissing. He is seeking that sensory input, so if the rule is he must ask first in order to get it, he will ask. (This is my hope, we shall see.)
  3. Rule: “Do not hug or kiss anyone, ever, at school.”. Perhaps I should make this rule more broad. But because school is the immediate concern, I am keeping it focused on that. Once he accepts this rule for school, I will broaden it to include other places he goes.
  4. Rule: Kisses can only go on cheeks, foreheads, or hands. Nowhere else.
  5. When he asks, “Can I kiss you?” I tell him where and how many times. I do not simply say “yes” or he will machine gun kiss wherever is closest. I say, “Yes. You can kiss my cheek two times.” He does, but will simultaneously grab some strands of my hair and cross it over my face when he’s done. So… we’re still working on that. (BTW, I plan to solve this hair issue by whacking most of mine off. It would be one less distraction.)
  6. Make a suitable consequence. I am not trying to teach him that kissing is equally bad as hitting. So the consequence is something like, “You will lose ten minutes of electronics time.” It’s not a big deal, but it does get his attention enough to make him think about his actions. Ideally, I want him to follow these rules because he understands the importance of personal space, not because he’s afraid of losing electronics time. But, you and I both know it’s not that easy with most kids. If I sense that he begins to do it just to cause a negative reaction, then bigger consequences will apply.

I write about a lot of things here, not always Autism. But this particular topic is for the parents of autistic kids who follow my blog. Despite writing about many topics, most of my readers find me through searches about autism, about which I am no expert. I simply share my own experiences and what little bit of knowledge I glean from raising my son and hope it helps others. If anyone else (parent, teacher, or autistic) has something to add about this topic, please feel free to post a comment. I’m curious to know if you have dealt with this, what has worked, or what did not. Your insights are just as valuable as mine. ❤

Grocery Shopping with Autistic Kids

My son earns a $1 for pushing the shopping cart in the grocery store. This is part of his Occupational Therapy homework I came up with after watching him crash a shopping cart into five things in under two minutes. I made a deal with him. If he can navigate the cart at a slow pace without hitting anything, he earns one dollar. If it is a long store visit (over 30 minutes), I give him the choice of continuing and earning a second dollar.

Before we started doing this, he would stand on the lower bar of the shopping cart and lean his back against my chest while I pushed him around. He made zero effort to hold himself upright and was very much like a rag doll. He had no reason to pay attention to anything, not even his own safety. He left it up to me to keep him from falling. So, it was a real workout for me to shop with him. When I finally decided he’d have to walk on his own, because an almost-seven-year-old boy should be able to do that, he was still hungry for that pressure he got while standing on a bar and pressing against me or draping himself over my arms.

Pushing a shopping cart also gives him pressure, but there is focus and effort involved. It is not as easy as it looks. Both hands have to push with different pressure to steer, and the force used to push forward must be balanced with ones ability to turn left and right. My son really wanted the money, or he would have given up. And, today when we got a cart which constantly veered left, he did give up.

His behavior in the store is greatly improved when he is given this task. He is present, in the moment, and actually enjoys the challenge as long as he is having a certain level of success. Being successful is really important.

When we finish filling up the cart, I also ask him to help unload everything at the checkout. His willingness to help me is greater if he has been helping push the cart than if he has been riding on it.

I hope this idea is something that will work for you and your child. Every little bit helps. Is there anything you do while shopping with your child to serve a double purpose?

The Meaning of Should

My first grade son is autistic. My fourth grader is in class with an autistic boy. When she tells me stories about the boy, (I’ll call him Drew), I listen to the words she says but I see in my mind the future for my son. I know every autistic child is different. I will give room for my son to be whatever he will be, better or worse, and love him just the same. But what lies ahead is such a mystery with so many possibilities.

The story my daughter told yesterday about Drew did not make me think of my son’s future as much as I thought of his past. There is a consistent trait among those on the autism spectrum which is to take things literally. Common misuse of words is accepted by most of us, but flies under the radar of ASD kids. As an added complication, when autistic kids speak literally with their learned use of words, they are often misunderstood because other kids learn the common misuse of those words or a variety of uses not yet explained to the autistic kid.

So, before I tell you the story, I have to say that my response to it was to say, “awww” in a way that meant I thought it was both cute (because it reminded me of my son), and sad for Drew. My daughter said, “Why did you say, ‘awww’ about what he did?” Because she, and probably all of her other classmates, did not understand the inner workings of Drew’s mind which caused this event take place. They thought he had been bad.

The story:

In music class, the fourth graders are learning to play the recorder by doing what is called, Recorder Karate. If they successfully play a certain song, they get a “belt”, which is a colored string to tie around the base of their recorder. My daughter is on red, which means she will next try for brown, and then her black belt. Drew was on his brown belt and trying for his black belt. (I was very impressed that Drew was doing so well playing an instrument and it made me hopeful for my own son.)

Well, Drew did not play the song well enough to earn his black belt. The music teacher told him he would have to try again the following week. Drew was upset and began to cry, but it was not a meltdown. He was just sad.

After they walked back to the classroom, another classmate noticed Drew was crying. The classmate said, “You played that song really well, Drew. You should have gotten a black belt.”

Drew got a big smile on his face and jumped up and down, clapping.”Yay!” He said, and ran out of the room (breaking a rule), and all the way to the other side of the school to the music room.

My fifth grader interjects here to say, “That was Drew? We all heard someone running down the hall. My teacher opened the door but whoever it was had already gone out of sight.”

My fourth grader laughed,  “Yes, that was Drew. He went into the music room and grabbed a whole handful of black belts and tried to yank them off the hook. When the teacher told him he couldn’t have one, he started screaming and had to be taken to the resource room for the rest of the day.”

I felt so bad for Drew because I knew he misunderstood and thought “You should have” meant he literally should have. It’s a phrase we avoid with my son unless we are telling him a rule. Because to him, what is the difference between these things:

  • You should walk in a straight line.
  • You should keep your hands to yourself.
  • You should raise your hand before you speak.
  • You should have gotten a black belt.

Because Drew was instantly happy and not mad by the statement, “You should have gotten your black belt,” he obviously assumed it was a rule he didn’t know about. He thought it was an absolute fact that he should get it. If he had understood it the way the classmate intended, Drew might have gotten upset or resentful, but would have likely not gone to the music room and attempted to physically get one.

So why did he grab them all? Fine motor planning is difficult.

Here is where I see the tragedy in this story:

Not one person had all the details. I’m not sure if any teacher knows that the classmate told Drew he should have gotten a black belt. Without that key piece of the puzzle, how can they assess what was happening? How would they know that Drew was doing what he thought he “should do”? To the teachers, Drew was breaking many rules and it’s human nature to believe he was angry about not getting a black belt. And maybe Drew was a little angry about that, but it wasn’t his motivator.

The classmates were in an opposite position. They all knew that Drew was told he should have gotten a black belt and they thought it was funny that those words had sparked Drew to do what he did. But they didn’t know why that happened. To them, it was unusual. An unusual kid did a rebellious thing, he broke the rules in a way a lot of kids envy, and when it was all over, he was still just an unusual kid. Everyone laugh, now.

I see it in my own son that he knows he doesn’t quite fit in with the other kids. Lots of kids will call out to him to say hello, especially kids in the older grades. He has potential to be a popular kid, one everyone knows and mostly everyone loves. But… who will understand him?

It is no wonder many autistic kids, as well as adults, are closest to their primary caregiver. Being understood and not needing to explain with words is heaven. Being misunderstood and unable to find the right words to explain is hell. I’m not sure when it was that Drew finally understood for himself what had happened yesterday. It couldn’t have been easy. I just hope he was able to find a moment of peace to build up his strength before going back into what must feel like an alien world. All that ordinary looking stuff autistics do at school is hard fought to accomplish. They honestly deserve many black belts for more than just Recorder Karate.

Baby You’re A Rich Man

Even before we moved to Texas, my son knew what money was. He came to understand the value of money when he was 3 years old and the Angry Birds game began allowing the purchase of a Mighty Eagle for 99 cents. (I believe my details there are accurate, but he’s the gamer guy, not I.) Anyway, my son would cry because he had no money.

Money was synonymous with game upgrades. Game upgrades were synonymous with winning. Winning was awesome.

When we moved to Texas a couple of years ago, we also moved far away from the rest of our family. Because of this, my kids no longer receive things like bikes, clothes, or giant stuffed animals from relatives for their birthdays or holidays. They, instead, receive money. No box of chocolates from Granma, they get money. No Easter basket from Granny, they get money. No fifteen presents under the grandparents’ Christmas trees, they get money.

He opened up his Valentine’s Card from his Grandma and said, “Ten bucks, woo-hoo! I can buy more expensive items!”

Remember when you were a kid and someone gave you money? I do. I got excited over nickels and dimes. There was no form of money too small. I squirreled mine away and refused to spend it which pissed off my older brother because I always had more than he did. So, my kids like the money and do not feel cheated by the lack of gifts. But none of my girls love their money as much as my 6 year old son.

With Christmas and Valentine’s Day, he accumulated more spending money than I have made in that same amount of time selling books. He knows exactly how much that is and he likes to remind anyone who will listen that he has that amount.

This morning I asked him, “Will you go upstairs and turn off all the lights? If you do, I will give you a dollar.”

My knees are bad and I hate walking up the stairs, so I hoped he’d take the bait. But, I had my doubts because one dollar doesn’t seem like much compared to his savings.

He said, “One dollar? Okay!” He ran upstairs and flipped off all the lights.

When he came back, I handed him the dollar my husband had left on the counter. My son took it and held it up at arm’s length to get a good look at it. “One dollar! I am a rich guy!”

I said, “If you do well at the doctor’s office, we’ll go to the store and maybe you can buy something.”

“Buy something? Yeah! Maybe a toy.” He sat on my lap.

“I don’t know what kind of toy you can buy with only a dollar, but we’ll look. Besides, you have other money.”

We went to the van, but along the way he had to stop and have help shoving his dollar into his coat pocket. As I buckled him into this seat he said, “I am a rich, rich guy and I can get more and more expensive things.”

I didn’t say anything, not wanting to encourage what was teetering away from cute and tipping over into sounding arrogant.

The money wasn’t mentioned again until after we finished at the doctor’s office and went to the store. I brought it up before he did because I wanted him to spend his dollar, not hold onto it. I wanted to use the moment as a lesson in how little a dollar would buy. We started out on the grocery side of the store, so there wasn’t much he wanted to buy there. But, he began to call out the prices of things as we rolled the cart past them. I could tell he was keeping his eyes peeled for any $1 items.

I intentionally avoided the toys and wheeled down the book aisle. I showed him a few Lego books, all more expensive than $1, but encouraged him to consider using some of his other money to make up the difference. He settled on a Marvel Coloring book which cost exactly $1. (I did not explain about tax.)

At the checkout, he pulled the dollar from his coat pocket and unfolded it. Then he handed it over to me, a satisfied look on his face.

Next, we went to the drugstore. That’s where I realized just how much he had learned about saving vs. spending. Obviously, I needed to tweak the lesson.

As he grabbed the shopping cart handle and stood up on the bottom bar (I always hold him in place with my arms under his underarms for support), he saw a display of Easter rabbits. He said, “Ten dollars! No one will buy those.”

“Someone might,” I said, and maneuvered us down the candy aisle toward the pharmacy counter.

While I stood talking to the pharmacist, my son eyed a battery display, the kind for hearing aids and such. The pharmacist said it would be a few minutes, so I told my son to hop back on the cart. He did, but his eyes stayed on the batteries, “Twenty dollars!? That is an unpopular item! No one will buy them.”

“Actually, people do buy them. They don’t need them often, so twenty dollars isn’t so bad. Plus, it costs more money to make batteries than some other things.”

Again at the ACE bandages and knee braces, he said, “Fifty dollars! These are unpopular.”

I sighed, not really wanting to explain again, but I did. “Some things are worth the money if you need them and you don’t have to buy them often.”

He wasn’t hearing it. His little eyes scanned the aisles for expensive items and he’d read off the prices just like my Papaw Duncan used to read billboards just to prove to himself that he could still see them. Only, my son’s voice held disdain instead of humor. “Fifteen ninety-nine! Twelve dollars! Oh, there’s more batteries! Ten ninety-seven!”

And then we came to the ball display, the tall wire basket in the center of the store. “Oh, Spider-Man! I want one!”

I pulled out the Spider-Man ball and handed it to him so he could look at it. “Don’t throw it,” I warned. “Just look at it. It’s five dollars. Do you want to spend your money on it?”

“My money?” He said, remembering his stockpile. He thought for a moment, “Yeah! I’ll do that.”

So, $20 for hearing aid batteries is too much. $50 for a brace that helps a person walk is too much. But $5 for a Spider-Man ball is worth every penny. Oh, to be a kid again….

Reason With Him – Autism and Medicine

Today I wanted to cry, but didn’t. It has been a long time since I felt overwhelmed by parenting. I’ve been a mom for nearly fourteen years now. My son is six. I’ve done six. My girls were once six, so I’ve already been here three times. But, it’s different this time. My son is autistic, and though that does not lessen my love for him, it certainly has me editing the parenting playbook I created with the first three kids. I have done this, yet I have not done this.

If you had never been around autistic kids, you might not even realize there was anything different about my son, at least for a little while. He’s verbal and loves to engage socially, however awkwardly. He doesn’t always stim, but sometimes he will jump, shake his hands, or make noises. Most people assume it’s random silliness.

Today he is sick (still, after four days), has a sore throat, and a rash began developing on his cheeks. If it wasn’t necessary, I wouldn’t have bothered taking him to the doctor. For the last two years, I have been unable to get him to take medication. There is no point taking him for medication which he will not swallow.

But, today it was necessary. We went to a walk-in urgent care facility which we have gone to a number of times. I explained to the doctor that we struggle to get my son to take medicine and asked if we might be able to get an injection. (I just said “we” when I mean “he”, but I also say “we” sometimes when I mean “me”… because that’s what parenting does to people.). I explained that even if we forced the medicine into his mouth, he would spit it out. The doctor said an injection would give no guarantees he wouldn’t still need to be on antibiotic medication.

The doctor said to me, “He is six. He is not a baby who can not be reasoned with.”

Then the doctor said to my son, “It is important to take your medicine. If you do not take it, you will have to see me again on Friday and we will have to do some things you won’t like. You do not want to see me again on Friday. So, be sure to take your medicine your mom gives you.”

My son nodded while I cringed. I have never used scare tactics about how terrible things will be if I think it will come back to bite me later. But, it was already said and there was nothing I could do about it. I’m just glad the doctor didn’t say the word “shot”.

So, I left there feeling like I had somehow failed by underestimating my son’s abilities. The doctor just explained the importance of medicine to my son and he nodded his head that he would take it. The doctor made it look so easy and I felt a little foolish.

We went to the drugstore. I let my son choose the medicine flavoring. He chose watermelon. I let my son choose TWO candies he would be allowed to have after each dose of medicine. He chose DOTS (don’t ask me why… ugh), and Skittles (wildberry flavors). So we came home with the meds, the candies, and an orange soda to wash it all down. I laid out the candies on the table beside the soda. I asked if he prefers to drink from the dose syringe like a straw, or prefers to drink from a cup himself. He chose the cup, so I set it beside the candies.

My son goes to the table and leans down to smell the medicine. I know this is a bad idea, but it’s too late. He insists he doesn’t want it. I think about what the doctor said, that he is six and can be reasoned with.

I said, “You have germs and this medicine is going to kill the germs. You need to take it or you will not get better. See the rash on your face? This medicine will help heal those places so they don’t become sores. If you don’t take the medicine, it would spread to other places, or get worse.”

“I hate the medicine!” He cried and pushed it away.

I said, “If you spill it, we have to go back to the doctor and he will force you take it.” (I avoided mention of the word “shot”.)

More refusals, more crying, more attempts to push it out of sight. I finally resigned to doing it the old fashioned way. I sucked the liquid into a dose syringe and told him I was going to have to make him take it. We go to the couch and I wrap my legs around his legs, wrap one arm around him to hold both of his hands, and begin to slowly inject the liquid into his mouth.

He screamed in fear. I hated it. It felt like I was violating him, but I didn’t know what other option I had. I wanted him to get well.

As in the past, he nearly choked on it and I had to sit him up so he wouldn’t. He was crying that it tasted bad. He refused to close his mouth or swallow. He just cried and saliva dripped from his open mouth as he said, “Ugh!” over and over.

I told him to take a drink, eat candy; but he refused. The taste on his tongue was everything. He couldn’t think of anything else. I wiped off his hands and face where sticky medicine was quickly drying. He begged for me to wipe his tongue, drool dripping.

I acted calm because my freaking out would help nothing. I acted like it was no big deal. I acted like he was not in distress. I hoped my acting would demonstrate the calm I wanted him to have.

And then he vomited. All the medicine and his orange soda from earlier were all over the floor. He walked up to me and wiped his mouth on my shirt. Somehow I ended up with it in my hair. I took him to the bathroom to wash his hands which were covered with vomit. I scrubbed quickly, wanting to erase the trauma. I got him clean and put my hair under the water, scrubbing it with anti-bacterial soap.

He said, “I will never take medicine again!” He was mournful, a boy suffering a terrible loss. He said, “Now the germs will grow and I will have more of them and I will not get better.”

Because he is six, he can reason. But he understands things in a magnified way… that medicines are not just unpleasant, they make you vomit; that doctors listen to your heart, but they also may hurt you; that germs exist and can kill you. He is VERY reasonable.

When I called the doctor and explained what happened, the initial response was to suggest he eat before taking the medicine. I explained that he did not vomit because of having no food, he vomited because the taste/feel of the medicine made him gag.

I said, “I don’t know if you saw on his chart, but he is autistic.”

He said, “Yes, but autism doesn’t cause–”

I cut him off to repeat what I had said in the office, “He’s very sensitive to unpleasant tastes or textures, but has a high pain tolerance for physical pain. I think he’d handle the shot better.”

And finally he listened, and again, I felt like I had failed. I had failed in a different way, by assuming that I was doing a bad job as a parent just because someone with a title thinks my kid can do more than I think he can. I let a stranger judge me, and him, in a way I felt instinctively was not accurate.

I don’t blame the doctor. He is working with me to figure out what is best for my son. I believe he meant well and he continues to be genuinely concerned about this situation.

But I do blame myself for pretending we are something we’re not. And for that, (and everything else, especially the fact that I had vomit in my hair), I felt like hiding in the closet and crying.