June 26, 2013

Starting Medication

Moe was a great sleeper as a baby. Sure, we had the usual newborn stuff, but after he hit the 4 month mark, he learned to fall asleep on his own and slept through the night. But something happened around the time Moe turned two, which is also around the time he started regressing in other ways.

Moe gave up his nap. Then, slowly, his nighttime sleep got worse and worse. At first he had trouble falling asleep. We tried behavioral techniques, sensory calming techniques and eventually melatonin. Then he started having trouble staying asleep. Sometimes the melatonin wouldn't work. We would have good cycles and bad, but the last six months or more have been awful. Moe rarely slept through the night, and his awake times would often span several hours. It affects all of us, including four year old Jelly.

We had to get a handle on this, so we found a psychiatrist.

Side note: finding a good psychiatrist is hard to do. Most of the ones I contacted aren't taking new patients or have waiting lists of several months, some up to 8-10 months. Many do not take insurance. Still, time and persistence and perhaps a bit of luck paid off.

Over the past two weeks, we had several appointments with the psychiatrist. At the last one, she recommended some medication. I am thankful we have options, and yet we do not rush into meds lightly. Moe cannot tell us how he is feeling. He already has trouble learning new skills. We want to make sure his mind is still sharp and that he is able to learn.

Our primary goal was to tackle sleep. After that, we wanted to address some emotional dysregulation, impulsivity, some aggression, as well as hyperactive behavior. It is our belief that most of these come from being over tired and over stimulated, but we can't get a baseline on those behaviors until he's sleeping well. We do not believe Moe has ADHD.

So we discussed options, and have decided to go with a medication that will help with sleep, and should also help address some of the above, as well as anxiety. I'm not sure yet if I feel comfortable talking about Moe's specific medications on this blog, so I'm going to hold off on that for now. (If anyone has specific questions, feel free to contact me here or via my Facebook page).

Last night was the first night, and we will slowly ramp up the dose over the next week if he tolerates the medication. We were worried about getting him to swallow a pill, but it is very small and he swallows it down with a spoonful of pudding. I hope that will continue.

It took two hours for Moe to fall asleep last night, but he slept through. It wasn't a great day for him today. It is hard to know if that is because of the meds or if he just had a bad day.

Tonight, he fell asleep at a decent time as well. I will be tracking everything, from asleep and awake times to overall mood.

June 20, 2013

Doughnuts and Inspiration

Photo by Salim Virji
I've seen a few inspiring videos circulating social media lately. I'm not talking about what is sometimes called "inspiration porn," videos, in which, for example one "normal" person does something nice for a disabled person, and we can all pat ourselves on the back and go about our day. I'm talking about videos created by people who themselves have struggled. This video of a Chris Varney's TED talk called "Autism--How My Unstoppable Mother Proved the Experts Wrong," is particularly good.

I watched that video and thought, "Okay! It won't be easy, but we can do this!" It goes along with the new and improved attitude I've been trying to embrace, something bold and fearless but never self-aggrandizing. I've contemplated a tattoo, but my dad said he'd be very disappointed if I got one. (Yes, I am forty years old, why do you ask?)

Jeff and I had a great talk a couple of weeks ago about finding ways to move past Moe's challenges. We had a nice father's day weekend, which even included lunch with my parents and their friends at a restaurant. Moe, as if reading our minds and also adopting this can-do attitude for himself, was so well
behaved and ate an entire pizza.

I've been worried, too, about the effect Moe's behaviors and poor sleep are having on Jelly. Jeff and I spoke about that as well. Even though this isn't the dynamic we imagined for our kids, they still do have a relationship that is all their own and will continue to develop. Jelly, who is incredibly bright and sensitive, could really become an extraordinary person because of her brother. Of course, she could do this on her own, and her relationship with Moe is valuable in itself. But having a sibling with special needs, I hope, will give her a perspective others may not have.

So...even with the last two days when sleep has kind of fallen apart again, Moe has been working and trying really hard. We are seeing progress. Jelly has been enjoying swim lessons. Moe and Jelly have had some really sweet moments together. Other good things happened. I watched some videos.

Enter, the doughnut.

Our nanny is on vacation for a couple of days so I had both kids this afternoon, and nothing planned. Even with the building confidence of the successful restaurant outing and inspiring videos, I know my limits. A visit to the park is out of the question. Jelly wanted to go to Target and even suggested Moe could stay in the cart and she would walk with us, but I declined this clearly well thought out offer. Instead, I thought of doughnuts. Moe loves a relaxing car ride, so I thought we'd go to Krispy Kreme, get a couple doughnuts from the drive-thru, and have a little treat. I'd even put on Jelly's playlist, consisting of a dozen crazy-making pop songs from "Call Me Maybe" to "Party Rock Anthem." Everyone would be happy.

The car ride was fine. Jelly got a doughnut with sprinkles. I was sucked in by the seasonal promotion and got a key lime cheesecake doughnut, which I do not recommend. I should have stuck with my standard lemon filled. I got Moe a plain sugar doughnut.

We pulled into the parking lot. I smiled and handed back the sugary treats. Moe (and there really is no other way to describe this), lost his shit. I have no idea why. He saw his doughnut and was literally frightened by it. This from the kid who has a reputation for cupcake eating. This was not his first circle of fried dough. But he wouldn't touch it.

I took a little video of this. I am not posting this because I am teasing him, or because I think it is funny. He was clearly really upset and I don't know why. I'm posting this because sometimes, when I say something like "Moe was manic" or "Moe freaked out," it's hard for people who haven't been there to know what that means. Today, this was what it meant. And though Moe has had many meltdowns, I have never seen him like this before.
I was not going to force my kid to eat a doughnut (though I did once basically force a date to eat a cupcake) and decided that our best course of action would be to start driving again, which did calm him down. At one point on the way home, Jelly offered Moe a white sprinkle, calling it "coconut." When I asked why, she responded that she knows Moe likes coconut so she called it that so he'd try it. He did. I then handed her a small piece of his doughnut to see if he would take it from her. He took it without incident, though he threw it on the floor.

We got home and I put on the second half of Finding Nemo for Jelly so she could finally see the end of that movie. Moe wanted a snack so I put the rest of his doughnut on a plate and set it down on the table. He looked at it, touched it, and then devoured the whole thing.

This is the thing about autism, or maybe just about Moe. He is unpredictable. I can do everything "right." I can create my "I can!" network, and I can presume competence and I can read blogs and watch every video of Carly and Temple and everyone else and on any given day, I don't know what will be our undoing. Today, it was a doughnut. But you know what? We got past that moment together. Moe ate that doughnut.

And it was good.

June 10, 2013


I sat on the couch in the mostly dark living room. Blue and green LEDs blinked, indicating our connection to the outside world.

Praying for sleep, I leaned into the couch cushions and closed my eyes, my foot still moving. Up and down, up and down, as I rocked a newborn Moe in his bouncy seat.

I tried to appreciate those moments, but I admit, in the exhaustion, I didn't always embrace the joys of motherhood.

Still, I remember his face. Chubby cheeks and milky smile on a perfectly bald head. His curls would take two years to appear.

On the last day of May, Moe turned six.  I haven't written a blog post since then. I've started many, adding to my ever growing drafts file. I've been busy, yes, but the truth is I can't seem to collect my thoughts enough to know what to say.


On that awful night a few weeks ago, when Moe screamed and screamed for hours on end, there was a brief moment of calm. Moe was in his room and Jeff was in bed. I went to the living room and sat on the couch. The same couch where I spent hours bouncing Moe. Studying his face. Learning what it meant to be a mother.

Dreaming about his future.

The memory of that time came rushing at me with such force, it was if I had simply dozed off for a moment, these last six years a strange dream that I'd forget once the day began.

For a moment I wished it were so. I allowed myself the indulgence of going back to a time when Moe wasn't struggling. When all the milestones were ahead of him. When I could dream of my future architect or doctor, imagine my feigned horror when he told me he wanted to go to Stanford instead of Cal. When I could wonder what his first words would be. When anything was possible.

The moment passed, and it is just as well. Such indulgences serve no purpose, add no measure of happiness to our lives. Maybe even the opposite.

Moe is six years old. He woke on his birthday with a smile and I gave him cake for breakfast.

He ate the whipped cream off the top and I told him anything was possible.


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