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.

 

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Expertise

My son is 7 years old. He is autistic, but he has very little interest in understanding what that means. He has more important things to contemplate like Minecraft, board games, and planning skits with his plush toys. One night this week he got out of bed and came downstairs. I was on the couch watching tv in the dark.

“I’m scared,” he said.

“Of what?” I asked.

“I heard a very weird noise and it was coming from outside my window.”

I sighed, “No, that was your dad. He was making weird noises [meowing and squirrel calls] in the bathroom which is right under your bedroom. Come over here and sit with me and he will tuck you back in bed when he gets out.”

“Yay!” He climbed up and got under my blanket to snuggle. Then he spied something on the entertainment center. “Is that a battery charger?”

“Where?”

“There,” he pointed, “It looks like a battery charger beside the Xbox. What is that?”

I couldn’t see anything out of the ordinary. “I don’t know, honey. You’ll have to ask your dad. That is his area of expertise, not mine.”

“What is expertise?”

“It’s when you know a lot about something and are really good at it, like Dad knows a lot about computers and technology. What do you think is my area of expertise?”

He thought for a second, “Hmm, I think it is taking care of me.”

“You are right! I am good at taking care of you because I love doing it so much.”

I could not have been happier to know he recognized this part of me as the most important one. Yes, I am an author and spend much of my day writing. But I hope I’m always best known for other things, at least in his eyes.

When Not to Become a Mother

I am a mother of four. I have always wanted to be a mother. I value motherhood. Notice the keyword in these statements. Hint: It is not “mother”. The keyword in these statements is “I”. I am speaking for myself, not all women. Not every woman wants to be a mother. Is that okay with you?

This topic has been on my mind for quite some time. But before we discuss it further, let’s take a moment to watch this video by Elizabeth Plank, “The truth about women who don’t have kids”, which prompted me to go ahead and write about this topic today:

There are a few points I want to make here. I hope you stay with me through them all.

Mothers play an important role in society. Raising children, no matter who does this job, is an important job to do correctly.  We should not scare teens into believing motherhood is a form of torture which will ruin their lives.  We should not speak about babies as burdens even though it is a very difficult job to care for them. But, motherhood is a lifetime commitment. The outcome is the quality of the next generation of humans, for better or worse. Those humans will shape the future and be our caregivers when we are old.  This thing, being a mother, can be done with joy and satisfaction, but it is never not a job. Women who choose this role should be respected and supported by the community because we all have a stake in the outcome.

Now that I’ve expressed my love for mothers, let me make my next point.

I am 42. I have many friends who do not have children. For some of them it was simply a matter of circumstances. For others, it was a choice. But regardless of what brought about the fact that they do not have children, I often hear them say, “I would have made a terrible mother.”

Oddly, men who do not have children do not usually make this proclamation. I’ve known a few men to say they would make terrible dads because their childhood was filled with abuse (which I don’t agree is necessarily the case, but it is their choice not mine). But generally speaking, childless men like to point out what a nightmare babies are, the little snotty, poopy monsters.

But women turn on themselves. Sometimes I think they do it because they feel society demands it. Do they think I will think bad of them for not having kids? Do they think the only acceptable reason not to have kids is if they would turn into child abusers?

Women need to stop this.

It is fine not to want kids. You can love kids. You can have the potential to be an amazing parent. And it is still fine not to want kids. There are plenty of people who will populate the earth. You are not hurting anyone by opting out for whatever reason.

Here’s the thing: Mothers are not saints by default. Non-mothers are not child-haters by default. Our ranking on the scale of good and evil does not rise as soon as we pop out a baby. Whatever good or evil existed within the woman before becoming a mother, it will likely still be there after birthing or adopting a child. Yes, because of hormones and instincts and obligation, motherhood has the potential to change a person in remarkable ways. So does climbing Mt. Everest, joining the military, charity work, and a plethora of other paths. Regardless of the journey, changes do not happen by default to every person on the same path.

So let’s just do this, can we? Let’s all agree to these points:

1. Mothers play an important role in society.

2. Women who are not mothers play an important role in society.

3. The decision to accept or decline the job of motherhood is up to each woman individually.

4. “I don’t want kids” is an acceptable reason for choosing not to have them.

5. “Motherhood is the best thing to ever happen to me.” is an unacceptable reason to pester childless women.

6. You get one life. Make it count in whatever way your heart pulls you.

7. Having a child does not make you a saint.

8. Once you have a child, you can not unhave it. Love it the best you can or let someone else do it. (Hint: there is no guarantee there will be “someone else”.)

9. God does not bless women by giving them babies. God does not punish women by making them sterile. A female’s ability to give birth is only relevant in livestock, dog breeding, and in saving endangered species.

People-magazine-cover-Duggars

10. Love yourself so you can love others. Every bit of love you put into the world will originate from within your own heart. Love does not come from your uterus.

Books

My Mom Wants to Nickname You and Other Facts

At the end of yesterday’s depressing blog post about the publishing industry (warning: it contains deep sadness and sarcasm), I said I would make my next post about rainbows and unicorns. Well, this post is about something even better: My mother.

Here we are in 1973 in east Tennessee.

JulieandCarol

You will be hearing a lot about my mother in the coming year. She and I are writing a novel together. Much of it will be based on her childhood years after her mother died. I can not wait to get started on this project with her. Actually, she is the creative drive behind it and I am just the one to make it happen technically. My mom has macular degeneration (which came on quickly in 2012 making her legally blind, though she still has some eyesight), and arthritis in her hands which makes typing difficult.

But today, because it is Mother’s Day, I am making a top ten list of things she has done to make me a better person.

1. Mom never judged us or our friends for the clothes we wore, the crazy hair styles, tattoos, piercings, or cleanliness. Mom treated all our friends the same whether they were rich or homeless. She would invite them in and ask if they’d like a glass of tea. Then she would begin telling them stories to put them at ease and make them comfortable to share their own. But she never pried.

2. Mom took us for walks along our dead end road. We carried plastic bags for picking up aluminum cans. We didn’t need the money from recycling. It was just something fun to do, like a roadside Easter Egg hunt. But if we were on certain roads we were not allowed to pick up cans because it was the Potter man’s territory. He needed the money from recycling, so we didn’t take his cans. As a matter of fact, if we were driving down a road where he frequently looked for cans and we had some in the car, Mom would tell us to “toss them out for the Potter man”. This backfired the year my little brother tossed a can out the school bus window believing he was doing something kind. He ended up being suspended from riding the bus for three weeks.

3. Mom was terrible with directions and she wasn’t that great at driving in general, at least not when we were really young. But she decided now and then to take us on vacation by herself. My two brothers and I would climb in the car and she would drive us toward Myrtle Beach with the assumption that one way or another she would find it. Every time we would reach Florence, SC she would point at a car and say, “I bet they’re going where we’re going. I’ll follow them.” And somehow we made it.

4. She used big words we seldom heard anyone else use. She would ask if we knew what the words meant. If we didn’t, she would have us look it up in the dictionary. Mom always wanted to be a writer and has kept journals since the mid-80s. She enjoyed telling us true stories, rumors from her childhood, and superstitions. When I outgrew being read the Berenstain Bears books, Mom and I would read Woman’s World magazine together, take the quizzes, and read each other’s horoscope. She wrote short essays for similar magazines and had a few printed in the sections designated for reader submissions. Words made stories and stories made us live forever.

5. Cake. My mother loves to make cake. When she was a little girl she would have her little brother steal their grandpa’s chicken eggs so she could bake a cake for them. She always had a cake made for Sunday dinner. Before her macular degeneration forced her to retire from her job as a rural mail carrier, she would make cakes for all the other carrier’s birthdays. To her, cake is what you give people to make them happy and there can never be too much happiness.

6. Mom did not just deliver mail to her customers. She listened to their stories, worried about their problems, looked in on them, set them up on dates, and fed their animals if they couldn’t. One elderly woman called her at 6:00 in the morning to ask if mom could please bring her some toilet paper as she came by on the mail route. You may wonder how the woman got my mom’s cell phone number. Well, mom gave it to out to certain customers who might need her. My mom stopped and bought toilet paper and took it to the woman.  She is not afraid to be needed.

7. Thanksgiving is a time for family. Christmas often revolves around the children, but Thanksgiving revolves around the mothers and fathers, grandparents, and cousins. It can be a very difficult holiday for people who have no family. Mom never hesitated to invite people from her mail route or friends of ours who were alone to come share food with us. Not everyone took her up on it, but some did. When there is a stranger sitting at your Thanksgiving table, you see your family through their eyes. It was a gift to be able to do that.

8. Mom nicknames everyone, especially if she loves you and maybe if she doesn’t care much for you. It may be as simple as adding “Lou” to the end of your first name. Her children were “Number 1 son”, “Little Girl”, and “Woody”. Co-workers were Wild Child, Hollywood, Mary-Mary, and others I have forgotten. Sometimes she would use the person’s real first and middle names or create a new middle name. With pets, it went quite overboard. My miniature dachshund, Dorothy, had a plethora of names. Dorothy was Dorothy Diane, Pidy-Tah, Pidy, Pie, and Tah. She called dad, “Chum” and every now and then when I was very little she would say “Chump” under her breath and laugh. Her brothers were Ronald-A, Donald William, Douger, and Rinky-Dink. Whoever you were in all the rest of the world did not matter. Mom saw you as you were to her, and that needed a name all its own. (She may have picked this habit up from her Daddy.)

9. When I was between the ages of 9 and 13, mom would buy things for me and say Dad bought them. I believed Dad had actually bought me an Olivia Newton John record and my very first eyeshadow until many years later. When she told me that she, not Dad, had bought those things and had all but forgotten ever telling me they were from Dad, I was surprised and confused. But looking back on it I remembered how I felt at those times, as if the gifts were proof he really did care about me. She was not interested in being a favorite parent. She really wanted us to have a good relationship with Dad, too. Part of her efforts in bringing that about was to buy me gifts “from Dad”.

10. Mom is a peace keeper, sometimes a peace maker. She calls people Sir and Ma’am. She apologizes when people are upset, even if they are upset at her for things she did not do. We marvel at people who do these things. But as her child, especially as IBooks became her grown child, it is hard to watch. I was not born with her temperament. Justice before peace was my motto. It was difficult to see her hurt by people and know all she wanted was to move on in peace when my entire being demanded I seek justice for her. As an adult I have been known to confront people who have hurt her. I do it in private and shame them mercilessly for hurting her. I leave them with, “All she wants is to be left in peace. If you tell her I talked to you it will just upset her more than you already have, so don’t mention that I came to you.” And because everyone knows my mom is, in fact, a selfless and kind person who does not deserve to be hurt, they would agree not to say anything.

I did not turn out to be a carbon copy of my mother. But everything she is has made me a better person than I could have ever been without her. Growing up knowing my mother had lost her mother to breast cancer when my mom was only 7 years old, I valued her in a way some kids may never think about. I know I am lucky and I never take her for granted.

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.

Love and Listen, on the topic of Nature vs. Nurture

I’m not an expert on dividing and labeling things as caused by ‘nature’ vs. ‘nurture’. But, I have four kids. And what I believed about the nature vs. nurture argument has steadily changed with every new addition.

Let me quickly give you a glimpse into my personality as it relates to motherhood. When I was in elementary school in the 80’s, I loved my Adopted Dolls. I pretended to teach them to read. When I was in middle school, I still played with them. When I was in high school, I started clipping news articles about raising children and child psychology. This all means that: parenting mattered to me. I wanted to do it “correctly” so that my future children could reach their highest potential. I loved them way before they were born and I had no intentions of letting them down.

I was a bit obsessive.

Before my oldest daughter was born almost 13 years ago, I stimulated her brain in the womb. And then she was born and every single time she did a wrong thing, I was right there to correct it. Her entire ability to function among other humans rested entirely in my hands. If I did not guide her along the good path, she would later fall in with the riffraff and be ruined. (Even though, at the time, I did not believe there were “bad people”, but I wasn’t about to let my daughter fall in with “people whose parents don’t care about them.”) Every move she made, I was watching her. And she as a toddler had better have made decisions like the all-knowing 30 year old woman I was at the time.

So, I find it hard to be too angry at mothers I see doing this same shit to their kids. And they brag about it. They say things like, “[2 year old] ran to the door with his toothbrush and I popped his butt and said, ‘toothbrushes go in the bathroom’.”

Because if a toothbrush leaves the bathroom, she had failed as a parent. I wish I could see them now.

When my second and third daughters were born, I realized that my first baby was not THE BABY. All the advice I had doled out over her short little life amounted to a pile of poo. But, I still continued to put my foot down with her, like the time she walked into the bedroom with a plate of chicken nuggets. They were sliding around and I could just see them falling onto the floor at any minute. That was bad. So, so very bad! And I still continued to get frustrated at my inability to mold her into a 2 year old adult, so much so that sometimes I threw things and screamed and looked like a monster.  They day she laughed at me at the peak of my rage was the day I stopped thinking rage was a solution.

That child, my oldest, I learn so much from her.

But, I had more revelations as my younger girls began to talk. I allowed them to disagree with me. We argued. We debated. I asked for their input. And I learned very quickly just how complex and different they were. I treasured these differences. One of my girls is sensitive, yet strong willed. Another wants so much to be accepted, but loves to be shocking. There is not a single parenting plan that would work for all three of my girls, other than this: “Love and Listen”.

I was proud of how far I had come as a mother. I still screwed up sometimes. And don’t think my girls didn’t point it out when it happened.

So, when my son was born, I didn’t worry so much. I thought, “He will tell me what he needs if I just love and listen.”

But, there was a problem with that.

We didn’t know it until he was 15 months old, but my son was autistic.

So, when he was a baby, if he turned his head to stop nursing, I assumed he was full.

If he didn’t ask for juice while I was at work on Saturdays, my husband assumed he wasn’t thirsty.

He could go long periods of time with a dirty diaper because he was contentedly playing with his magnetic letters and made no indication anything was wrong.

Once, I walked past the living room and saw him standing in his chair by the widow with blood on his hand and more pouring out of his mouth. He had fallen and his tooth cut through his skin, but he wasn’t crying at all.

His ability to express his needs at that time was nonexistent.

My listening skills were failing me, and I had to learn a whole new way of listening to a child who could not communicate.

Humans… You… hello, reader, you… are complex. Why do you do what you do? Why do the things that make you happy make you happy? Why are you afraid of the things you fear?

Of course, my failures and successes have shaped my children’s outlook. The way they see the world is very much related to how they see their parents. But, what we are able to actually do with that feedback about the outside world has so much do with what we were born with inside of us.

This all relates to how I view most political discourse. Sure, there are a lot of people who believe that you can go get a switch and take it to the behinds of every person that has done wrong and suddenly the world will be a better place. Right? Someone needs to spank those damn kids. Teach them right from wrong. Keep them on the “good” path, which is “my” path, because I’ve been on this path my whole life and I am so, so good.

It means nothing. That kid is going to sit down and laugh at you because they have something inside of them that you aren’t hearing.

That person that you disagree with is going to sit down and laugh at you because they have something inside of them that you aren’t hearing.

You are sitting down and laughing at them because you have something inside of you that they aren’t hearing.

I can’t tell you where to draw the line between nature and nurture. But, I assure you that nature matters. It matters in parenting and it matters in our friendships. It matters in how we view people who do things we can’t believe anyone would do. Nature does not excuse hurting people or doing truly bad things. But often, it is in the name of Nurture that most harm is done.
Love and Listen.