Amazing Self Advocacy at the Dentist!

The kids had dental cleanings scheduled for after school today. Last time, Riley really wanted me to go back with her. This time, as I’ve done every time, I asked if she wanted me to join her? Or was she okay going by herself?

“I think I’m okay going back by myself,” she said.

I played it cool.

“Okay Riley. And if you want me for any reason, you just say, “Excuse me, but I’d like you to get my mom.”

She looked up from her People Magazine,

Okay? Okay. We’re good.

The hygienist came out and took her back. No prob.

I sat in the waiting room with Seth, basking.

When she was finished, she came out as if she’d always gone back to get her teeth cleaned without me. Totally nonchalant.

Can you take it?

Next it was Seth’s turn. He did want me to go back with him, so I went. On the way down the hall, the hygenist (who had never worked with Riley before) told me that on the way back to the room, Riley had advocated for herself saying, “I have autism, and I’m really sensitive so I’m going to ask you to be gentle.”

I am so glad she told me Riley said that. I felt giddy over it. She’s asked the assistants at the orthodontist’s to be gentle before, but never explained the whole thing. Never without her mom.

I thanked her and then told the hygienist about Seth’s tics, made sure she knew he can’t help it, yada, yada.

All was well and then, she tried to give him mint mouth wash. Little man don’t do mint. He hates it, says it burns his mouth. He stopped her and asked for another flavor and she said, sure. Evidently, Seth advocates for himself too.

It was awesome telling HT. He had the exact same proud, thrilled, oh-my-God-how-far-we’ve-come reaction. We love us some Riley. And Seth is the coolest as well.

It has been an extremely stressful time lately, getting the house ready to sell. I’ve been out of my mind with the pressure of getting it all done. But this, has made my day.

I can’t stop smiling.

*Sometime soon I’ll tell you about my talk at the dental school last Friday, a result of the post linked to above. The short story is they were nice and it went well.

Lego Therapy

Our dining room table is perpetually covered in Lego. There is also a table in Seth’s room, and they often overflow the table and creep across his floor. There are several storage bins but the Lego can’t seem to stay in them. It is the only present he wants for Christmas, birthday, etc. Any gift card he receives, or money from his grandparents goes toward buying more Lego.

Several months back, he was having a really hard time sleeping at night. We think it is part of PANS/PANDAS because he’d never had a problem before, and it was tied to great anxiety. We had compassion for him. But we wanted him to go to sleep. Both because his tics are so much worse when he is tired, and also because at the end of a long day….Todd and I need to relax. We need to reconnect. We might need to have a gluten free pizza. Or popcorn. We need non-kid time. No offense to any kids of mine who might be reading this, but it’s true. Couples need couple time.

The only thing worse than having a kid you’ve already tucked in come out several times, is sending him to bed fed up with him. Especially when he is afraid and can’t help it.

So we came up with a plan.

“Seth we know this fear isn’t really you, it’s PANDAS playing tricks with you, but we want to trick it back. We want to see how powerful your mind is. So when you think fearful thoughts, we want you to think of a Lego mini-figure. See if you can harness your thoughts by thinking of something you love. And if you do this for a whole week, you will get a real mini-figure.”

He is always welcome to come out if he truly needs to, and we promise we will not be upset with him. We agree to come check on him every 16 minutes, until he is asleep, and usually he’s asleep by the second check.

The boy has not come out once after being tucked in, since August. On Wednesdays, he goes to what is now “the mini-figure drawer” in the kitchen, and takes out what’s due him. Some look at it as a bribe, but I don’t. I think he’s learned he can get through a fear. And yes, he’s milking it. He could totally do it without the mini-figure at this point, but what’s it hurting? Call it what you want but for three bucks a week, it is worth it to us. The kid is an angel and never asks for a thing. I can live with giving him a weekly mini-figure.

We’ve had to move to bigger measures for his fear of fire drills and lock down drills at school. Using the same concept, we are now keeping a ten dollar Lego on hand (it sits in the china cabinet, where he can see it through the glass). He knows if there is a drill at school, when he gets home that day….the coveted Lego in the cabinet will be all his.  Whereas before he was completely terrified, he now has a positive association with the drills. He hears the drill, his body reacts in fear, but a second later, he’s thinking about the Lego. It’s working. I am even able to joke with him on the way to school saying, “I sure hope there is a drill today!” And he grins, knowing the Lego is home awaiting him.

I spoke with the therapist we took him to about all of this, to make sure we weren’t inadvertently screwing him up, and she said no. It is classic conditioning. She thought it was good. One day he will not need a Lego. One day he will connect the dots and know it is not the Lego helping him, but his thoughts about the Lego. But for now, it’s getting him through. One set of fears at a time. 

Between Sleep and Waking

Standing beside his bed, in the dim of his nightlight, I think.

Do I wake him? His sister has a snow day, but his school has not called it off. I watch him sleep. His body peaceful. Calm. Slow breathing. His skin fair. His dark eyebrows contrasting against his blond hair. Bending over I squint to watch his lids, to determine if he is dreaming. I think he is.

What are you dreaming about little man?

If I send him to school he won’t be thinking about the cats all day. He’s allergic. We need to find new homes for them. Two nights now he’s cried, brokenhearted. I run my fingers through his hair and he rouses. Just a bit.

Slowly he rises up from layers of sleep, until the tipping point is reached, more awake than asleep.

At precisely this moment, comes the first vocal tic of the day.

~

*Seth, age four, with his beloved cat Sam.

Brain on Fire

I recently read Brain on Fire:My Month of Madness by Susannah Cahalan. It is about a young woman working as a reporter in NYC, who suddenly shows signs of psychosis. She spends over three weeks in the hospital experiencing mania, paranoia, hallucinations, catotonia, etc.

It turns out she had something called Anti-NMDA receptor encephalitis. An auto-immune condition which put her brain under attack by her own body. It was treated with IVIG, plasmapheresis and steroids.

I read this with particular interest because of Seth and his PANDAS (which is now being called PANS because it seems strep isn’t the only trigger for many children).

The doctor that initially treated Susannah Cahalan accused the 24 year old of partying too much and suffering from alcohol withdrawal, (despite the fact that she wasn’t an alcoholic). He couldn’t figure it out, so he came up with that little diagnosis.

The schizophrenia label was tossed around.

She was in really bad shape and could have very easily been permanently institutionalized. She could have easily died from her condition if a different, brilliant doctor had not taken interest in her case.

The story made my heart break for the countless people with various conditions who are misdiagnosed. It made my heart break for people for whom science has not figured things out yet.

Cahalan’s story brought into focus how truly fragile our bodies are, but also how miraculously resilient.

Her story was told from a reporter’s viewpoint, piecing together details from her month of madness from medical records, family notes, interviews with doctors and friends, etc.

It was a gripping read. There were so many parallels between what she experienced and what autistic people likely experience. For example Cahalan is able to describe the experience of acute sensory bombardment from the inside. She is able to describe the social impairment many with autism face, from the inside.

Read more about the connection between Anti-NMDA receptor encephalitis and autism here. 

As a mother continually searching for answers, this book made me want to never give up.