Slightly Insane Mom

"All mothers are slightly insane." –J.D. Salinger
May 27th, 2014

Diagnosis pt. 2: In Which I Get Snarky

This is the second in a planned 3-part series on Sgt. Snowflake’s diagnosis. He was recently diagnosed with high-functioning autism (Asperger’s) and ADHD, combined type. Warning: these posts are heavy on the feelings, light on the humor. If you want humor, go read about my dog’s boner. You can read part 1 of the diagnosis series here.

Let me start off this post by saying that by and large, people are awesome. When I posted a request for information on autism and ADHD on Friendface, my friends came through with more resources and words of support than I ever imagined. This post isn’t about those people. This post is about the people who don’t know how to react, and so they say whatever foot-in-mouth nonsense first crosses their cerebral cortex.

A Handy Guide to Saying the Right Things to a Parent of a Child with Autism

So let’s say a parent comes to you and says, “My child has been diagnosed with high-functioning autism.” Here are some things you might want to avoid saying:

“What a shame.” You know what’s a shame? Kids with terminal illnesses. World hunger. Illiteracy. Violence in our inner cities. Priorities, people.

“I wonder if he’ll ever [go to prom/play football/go to college] now.” There are a lot of things my kid might not do. But last time I checked, you’ve never been to the moon or discovered a cure for cancer. What’s your excuse?

“Do you think it was something you did during pregnancy?” Yep. All of that air I was breathing and genes I was passing on. Definitely all my fault. Thanks for reminding me.

“My friend’s roommate’s nephew had that, but he grew out of it. Maybe your child will, too.” Anecdata is SO helpful!

“You’re getting a second opinion, right?” I dunno. I figured I would just wait for you to go get a Ph.D. in neuroscience and prove the first doctor wrong.

“I sell a line of supplements that’s been known to help with that.” Let me take your business card and I’ll get back to you.

“If it makes you feel any better, I’d never guess it by looking at him.” And you expected autism to look like… what, exactly?

“He’s probably acting out for attention.” I know, right? Why can’t he just shave his head and pierce his nose like normal attention-deprived preschoolers? Jeez.

“I bet it was that MMR vaccine.” You’re probably right. Jenny McCarthy will back you up on that.

“He has poor motor skills? Maybe you just don’t take him outside to play enough.” He’s the one I keep inside like a potted plant. The other two kids with perfectly normal motor skills are allowed to run and frolic as they please.

“I’m sorry, I’m just having a hard time processing this.” Oh my gosh, how RUDE of me! I totally forgot that my child’s autism is ALL ABOUT YOU!

Folks, if you have ever been in this situation, or believe you ever will find yourself in this situation, here’s a friendly tip: Take out that mental filter that strains the thoughts going from your brain to your mouth, dust it right the hell off, and use it. Because let me explain something here: when a parent receives a diagnosis like this, there is a grieving process involved. When you find out your child has a developmental disorder, your brain does something along the lines of this: Oh thank God, we finally have a label on it. Oh my God, my kid has a label. He’s LABELED. For life. What does this mean? Did I cause this? Will he ever go to prom? Will he have friends? What if he lives at home forever? I wonder if there’s a waiting list for behavioral therapy. What IS behavioral therapy? What IS autism, for that matter? Shit, I have to go home and google stuff. I just want to get in bed and cry. Maybe I can google stuff tomorrow. No, wait, we have OT tomorrow. Crap, have to get on the waiting list for speech therapy. This totally explains that time when he did XYZ at my inlaws’ house. Shit, what do I tell the family? They’re not going to get it. Maybe they will. I hope they don’t act weird around us now. What should I make for dinner?…

That’s just the first few seconds. And then you come home after a silent car ride with your spouse, and you begin making phone calls. You tell your parents. You call the therapy place the neuropsychologist recommended. You think about calling insurance to verify coverage, and then you think, fuck it, what I really need today is some ice cream, because I’d rather eat my feelings than deal with them right now. Because you’ve just come upon the first tiny kernel of realization about WHAT THIS MEANS for you as a parent. It means that everything changes and nothing changes all at the same time. Your kid is the same as he was an hour ago, and you’re the same, but suddenly the difficulty factor of your job as a parent has been multiplied times infinity-and-one. The old Acme anvil has just been dropped, Roadrunner-style, and you’re the Coyote with the birds and stars spinning around your head.

And you go on Friendface and see your friends posting Instacrap pictures of their frappuccinos and their pedicures, and bragging about their neurotypical kids being all typical and shit, and you realize that you are now a MOM OF A CHILD WITH SPECIAL NEEDS, and if that’s what life has handed you, then goddammit, you’re going to wear that scarlet A with the best of ’em. So you work up the nerve and you write a post about your kid, and you wonder if your friends will all read it and say a simultaneous “Well, that explains a lot!”

And then you make dinner, you go to bed, you cry, and you get up the next day and face the world in which everything is different and the same.

So just in case you never have to find yourself in my shoes, please heed my handy advice. Also, please read this article about the Ring Theory of Kvetching. I read this article shortly after a friend was diagnosed with breast cancer, and shortly before Snowflake was diagnosed with Asperger’s. It has truly changed how I approach people in a crisis, and how I look at other people when I am at the center of a crisis. The gist of the article can be summed up by this handy diagram. Read it and memorize it.

Illustration by Wes Bausmith, L.A. Times

Ring Theory of Kvetching

To explain: A crisis can be illustrated in concentric rings, with the person experiencing the crisis in the center. Those closest to them are the next ring out, followed by the next closest people, and so on and so on. If you encounter a crisis, ask yourself: what ring am I on? Your ring placement determines which people you are allowed to bitch to. Let’s go with the “friend with cancer” analogy. The friend, being the center of the crisis, is allowed to dump all of her feelings OUT, to any level of the circle, at any time. Her family is allowed to dump OUT to all levels outside of their ring; however, they may not dump IN. The only thing that goes IN is comfort. Dump OUT, comfort IN. If you are a coworker, thinking about dumping IN? Go dump somewhere else, because what you have to offer is not helpful.

I found myself thinking about the Rings of Kvetching a lot in the week or so after Sgt. Snowflake’s diagnosis: the massive challenge of always sending comfort and positivity IN, to Snowflake, the fear of dumping too much OUT onto others, and the anger and hurt at others dumping IN on us. I wish I could send around this chart to everyone who dumped IN with a note that says, “Thanks for dumping your bullshit on us. For future reference, here’s a handy guide on what NOT to do.” But perhaps that’s too harsh. Dumper-inners are often well-meaning folk, after all. They just don’t know what to say. Neither do I, sometimes.

So I’ll leave it at that, dear readers reader. Stay tuned for part 3.

May 13th, 2014

Diagnosis pt 1: Confusion and Doubt

This is the first in a planned 3-part series on Sgt. Snowflake’s diagnosis. He was recently diagnosed with high-functioning autism (Asperger’s) and ADHD, combined type. Warning: these posts are heavy on the feelings, light on the humor. If you want humor, go read about my dog’s boner.

I should start by telling you a little about my Snowflake. He’s such a cool kid. He’s goofy and likes to laugh and crack jokes. Starting when he was about 3, he discovered that he can make up his own songs. He composes elaborate melodies in his head, and sings them, mostly with nonsense words that he repeats exactly the same way every time. Recently The Dude played him “In the Hall of the Mountain King” on youtube, and the next day he ran around singing it, all the notes perfect after just one listen. He loves video games. When he was two, I got an iPhone, and quickly installed Angry Birds to see what all the fuss was about. I made it to Level 2 and gave up. Snowflake asked if he could play, and when I got my phone back a while later, it was on Level 27. He occupies himself in fascinating ways. He is rarely bored. He has little Angry Birds plastic figures that he runs around the house with, talking to himself as if he were one character or another, acting out scenes he’s constructed in his head. Sometimes he puts on his Mario hat and pretends he’s playing with his brother Luigi. And sometimes he’s Luigi instead.

Snowflake’s development was pretty normal up until age 2 or so. My labor with him was agonizingly long, but not high-risk. He was a high-needs baby, never wanting to be put down, but we assumed that was just his temperament, rather than something out of the ordinary. He crawled at 7 months, walked at 14. He was breastfed for 10 months, and then self-weaned. He picked up the hang of solid foods quickly. He was very verbal, and had an extensive vocabulary by 18 months.

Around age 2, we started to notice some things that seemed unusual. He would frequently gag on foods. He started getting fussy about trying new foods. He didn’t like anything with mixed textures, such as a piece of banana bread with nuts in it. When he was 2.5, I asked his pediatrician what we should do to get him to eat a bigger variety of foods. “Stop indulging him!” was the advice I got. “Make him sit at the table until he cleans his plate. If he refuses to eat, send him to bed without supper.” I struggled with that advice on a fundamental level. Allowing my child to starve himself didn’t seem like a logical option to me, nor one I could align with my conscience.

Snowflake at age 2

Snowflake at age 2

Around the same time, other people started noticing that Snowflake was different, too. The Dude’s family is large, with extended family gatherings sometimes reaching 50 people. On Snowflake’s third Thanksgiving, he spent the entire family gathering perched at the top of my inlaws’ stairs, his ears covered and his face red from screaming. It was too much noise. Too much to look at. Just too much.

I took Snowflake to mommy group meetings, and he would huddle on my lap with his ears covered, sobbing the whole time. On one occasion, a mom said to me, “Is he always like that?” I tried telling her that he’s not like this at home, but I don’t think she believed me, and I only half believed myself. I started taking him on fewer mommy group outings. I just didn’t want to have to make excuses for my son, why he was the way he was.

The Dude and I started having a hard time explaining Snowflake’s quirks. Our family and friends dismissed our concerns. “He’s just shy,” we’d hear. “He’s a picky eater. Just keep trying.” No one understood.

Snowflake at age 3

Snowflake at age 3

Between ages 3 and 4, we started noticing more things. Snowflake’s speech took on an odd pattern. Slow, deliberate, as if he were choosing his words with extreme care. His voice was both monotone and sing-song in quality, if such a thing is possible. At times, he seemed uncoordinated. He became afraid to do things that other kids do without thinking. Swing on a swing set. Go down a slide. Ride a tricycle. And he became defiant and anxious. When faced with a demand such as “put your shoes on,” he’d squeal and shake his head. Getting out the door to go anywhere was a 30-minute dramatic ordeal. He’d throw tantrums in anticipation of having to do certain activities. One time I told him we were going to the car wash, and he threw himself on the stairs, hysterical and paralyzed with fear until I told him we wouldn’t go.

I began Googling things. Eating disorders in children. Oppositional Defiant Disorder. Speech delays. Autism. I talked to my therapist, who told me I wasn’t being strict enough with him. Perhaps I should spank him, she suggested. I broke up with her soon after. She didn’t understand, either. No one understood.

By what I now realize is a sheer stroke of luck, our pediatrician retired, and I moved the kids’ records to a new doctor’s office. I made an appointment with Dr. T to discuss Snowflake. I told her about the eating issues. The speech. The tantrums. The anxiety. She immediately suggested the prospect of his being on the autism spectrum. She also said she believed he would benefit from occupational therapy to deal with his feeding issues. I felt an immediate sense of relief. For the first time, I had found someone who believed me, who didn’t automatically jump to the conclusion that our child was spoiled and undisciplined. Dr. T understood.

We began Occupational Therapy (OT) in Spring 2013. We filled out an extensive parent questionnaire about Snowflake’s sensory issues. Miss D did an evaluation. She determined that he had severe sensory issues with touch, and moderate issues with his vestibular and proprioceptive senses. OT would help with these things, she said. She’d work with him on his gross motor skills and his fine motor skills and his relationship to food.

Over the past year, we’ve seen a lot of progress in some areas. His gross and fine motor skills have improved by leaps and bounds. He’s more willing to try foods, although his diet remains limited, and mealtime is almost always a struggle. But for every two steps forward he takes, it seems he often takes a step back. In the fall he developed a fear of the wind. He hates the way it feels on his face. Imagine leaving a store with your child. As you exit the building, the cold wind hits his face, and he begins to scream. You’re in a crowded parking lot. People begin to stare. Your child screams the entire way to the car. He’s crying and slapping at his face. You hope people don’t think you’re a kidnapper. Now imagine that happens every day, for months on end, and you’ll understand what it’s like to go places with a sensory child. It’s draining.

We’ve learned to adapt to his issues somewhat. For example, I bought him a Spider-Man hoodie that turns into a mask. He wears it whenever he goes outside on windy days. He can pull the mask down over his face to protect him from the wind. I don’t mind having the kid who always wears a Spider-Man mask, because it’s better than a kid who is afraid to go outside.

Snowflake last month, wearing a Spiderman hoodie to protect him from the wind

A recent zoo trip was successful because of the Spider-Man hoodie

All of these issues have taken their toll. The Dude and I fall into bed every night, completely drained from the day. Most nights, we lie in bed, talking about Snowflake’s day. We speculate and we brainstorm. Sometimes I cry. Several months ago I doubled my antidepressant dose. Some days I need to take a Xanax to get through the day. Snowflake and I share anxiety issues, it seems.

And all of that, all of that weight of every day life, led us to finally seek a diagnosis. We wanted answers, and we wanted someone to show us a clear path. We knew we couldn’t go through life on Spider-Man hoodies alone.

We had him tested. We got the diagnosis. His thing, it has a name: high-functioning autism, commonly known as Asperger’s. And now we have a path.