Slightly Insane Mom

"All mothers are slightly insane." –J.D. Salinger
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.