Teeth, embarrassment, and thankfulness

We recently had a morning at Seattle Children's Hospital for dental work. Because Soren is so orally sensitive (the ultimate clencher), we need to use full anesthesia to do any dental work other than the very quick peek at the dentist's office (with three additional people holding down limbs).

Going to the hospital for the somewhat routine procedures is emotional for me. It's a children's hospital, for goodness' sake, and we're surrounded by sickness and injury and disease and even death. All parents have a specially colored ID lanyard, and I feel like I might start hugging any one of them out of empathy and solidarity. Even the air in the cafeteria feels thick, with the bonds between parents making me feel almost self-conscious. There's just a very thin line that separates us from the serious health issues that so many of these families face; it could so easily be us, as I've learned on this autism journey. It has nothing to do with what we do or don't do as parents.

So we go to the hospital because my kid has cavities. I'm embarrassed by how embarrassed those cavities make me, if that makes any sense. Dental health is a big deal (especially to Miss Only One Cavity over here), and it's my responsibility as a parent to manage my kid's teeth, at least now. It doesn't matter that brushing his teeth is a nightly two-parent strength test. I feel like a bad parent. And I feel a little judgy when I see the silver flashing from Soren's mouth. What five-year-old has caps??!

And then there's the layer of guilt. Soren's teeth must have been hurting him for months as we waited for a dental surgery spot to open up. One of his baby teeth had to be pulled because it was so damaged. I couldn't help him--heck, I couldn't even tell that he needed help. My baby. I feel like I failed him because his teeth are MY responsibility now.

And then I remember how superficial these pangs of embarrassment and guilt are when we're surrounded by The Big Stuff. Yep, my kid now has a mouthful of visible metal, and he had pain, but he's here, otherwise very physically healthy. I know embarrassment, and I know the puzzlement and grief at autism and its related anxiety. But I don't know that life-changing worry about disease or injury or death. I feel guilty that we're in this hospital for such a minor procedure, I feel guilty that I'm so embarrassed about my child's teeth--and I feel so grateful that this is all that's on our plate right now. And I know things could change tomorrow.

Ugly thoughts

I had postpartum depression (PPD) starting when Soren was about 3 weeks old. (Side note: Did you know 10-15% of women self-report experiencing PPD yet only 15% of those are treated?*) Luckily I recognized almost right away that the horrible feelings--deep sadness, anxiety, inability to concentrate, lack of bonding--were indeed PPD, and I had lots of help getting better.

One of the ugliest parts of the experience, other than the complete lack of joy at having a new, adorable baby, was the jarring, often violent thoughts of harm coming to my child. I had clear visions of Erik dropping the baby over cement and the aftermath. I dreamed repeatedly that I forgot my child--in the car, or even that I had a child at all. But the worst was the thought that I had when I plummeted to my lowest: it was of my hurling my own baby over our porch railing like a football.

Shocking and unpleasant, I know. Thankfully, I had a therapist who helped me see that these thoughts did not mean that I was actually going to follow through on these actions. (Doctors and therapists had ruled out the more serious and very rare postpartum psychosis, in which case these images would have been alarming indeed.) She explained that our minds know the most horrible thought that we can think, and when our defenses are down when we have PPD and crazy hormones and exhaustion, we go there.

We know exactly how to torment ourselves best.

What's more, the very fact that I was and am horrified by these thoughts is reassuring; it means that I know these images are vile. I feel guilty and sickened when I think them because they are not who I am or what I intend to do.

I'm thinking of this truth lately as I've had some difficult feelings and thoughts about Soren. Nothing like violent images or impulses this time, but just ugly feelings and words that my mind uses to describe or think about Soren and his disability. I won't spell out what those are; they are horrifying and embarrassing, and I'd kick your butt if I ever heard you say them about my child. But I know that in the midst of stress and confusion, my mind is choosing the nastiest way it knows to question my ability and character as a mom. (I'm pretty clever that way.)

I am horrified, to be sure. But I'm not panicking. I'm giving myself a wide berth because right now, parenting feels hard and I'm pretty drained and emotional. I am oddly reassured that I am so embarrassed by these nasty thoughts because it shows these thoughts are incongruous with who I am as a parent. It's almost like my mind brings out these zingers just to keep me on my toes and see if I will fold under the embarrassment and self-disgust.

But today, dear mind of mine, I have your number. You're right--you've found the most shocking and nastiest images for me to stew over.  But I'm not taking the bait. This child of mine is loved, loved, loved. And I am a good mom.


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* Please seek help right away if you are experiencing any symptoms of postpartum depression or postpartum psychosis. A great starting point for identifying symptoms and making a plan to get help is the site Postpartum Progress.

"Stimming" and our family

Soren has developed a new behavior of wiggling his fingers near his eyes, almost like sign language. Many family and friends have asked me what it means, so I thought I'd use this space to explain it generally (as best I can) and describe how we approach it in our family.

This type of behavior is a common one among people with autism. It's is called self-stimulatory behavior, or "stimming." These fidgeting or fiddling behaviors, like hand-flapping, which you've probably seen, might address a variety of needs: anxiety, fear, boredom, overstimulation, understimulation.

My guess is that Soren's various stims, like finger-wiggling, or excited jumping with thigh-slapping, serve different purposes. Finger-wiggling is a calming activity that we see at night or when there's not much going on. Jumping is often a response to positive stimuli, like music or a video, but there may be an element of dealing with overstimulation there, too.

There is a history of working with kiddos in therapy to extinguish this self-stimulatory behavior, rationalizing that stims draw attention to the child as different, may get in the way of attending, encourage zoning out, make learning and school in general challenging, and so on. When I think of the "Quiet Hands" goal, I picture those English-only boarding schools (run by Christian missionaries!) for Native Americans in our country, where using native language was forbidden. (Captain Richard Pratt, who started the first Indian boarding school, famously used the motto, "Kill the Indian, Save the Man." Wow--the parallels to the autism community are striking.)

The rationale about fitting in is always a red flag for me when it comes to dealing with autistic behavior. It points more to my insecurities and society's awkwardness and need for homogeneity than being anything related to my child. That this is a red flag for me is pretty ironic, because one of my main challenges (even pre-children) has always been hating to stand out. Honestly, I'd love for our family to fit in. Be perfectly average. But that's not going to happen.

My whole outlook on stimming was changed when I read this post. (Please read it!). This passage in particular rocked my perspective:

My hands are one of the few places on my body that I usually recognize as my own, can feel, and can occasionally control. I am fascinated by them. I could study them for hours. They’re beautiful in a way that makes me understand what beautiful means.

What rich meaning is behind those "noisy" hands. And how one-dimensional we can be when we judge the flapping.

So for the time being, while Soren's stims seem not to harm himself or others and don't get in the way of learning or having fun, we are fine with them. There's something almost dance-like in the graceful movement of his fingers. I wonder what that's like for him. If the stims increase in frequency or intensity, we may need to address them, but in a gentle way. I like the Floortime approach to trying to figure out what is the (most likely, sensory or emotional) need that the stims express, and channeling that energy into interactions with a parent or teacher that meet that need.

Honestly, the presence of stims still can be distracting, annoying, and embarrassing for me, especially when we're out and about in the community. They can broadcast our boy's autism diagnosis without that being anyone's business. But this week, at least, I'm trying to see what purpose those stims serve for Soren.

Sleep (ha ha ha *SOB*)

When I was pregnant with Soren, I remember thinking that labor didn't worry me at much as the post-partum period did. Specifically, I was consumed with the whole lack-of-sleep thing. You see, I adore sleep. It is the perfect escape. My idea of a perfect Saturday, for example, was always to get up, have brunch, take the paper to bed, and go back to sleep. Delish.

So it is a special kind of struggle (OK, agony) to have a child who doesn't sleep. Oh, I know, parents always say that their kids don't sleep. But we are in a different realm over here.

I hesitate to give you the details; I don't want to use this as a place to complain about my sweet child. And we are in good company: up to 80% of kids with autism have some sort of sleep issue. But not sleeping is crazy-making. That's how they torture you, after all.

Our sweet son gets up every other night, sometimes every night. And once he's up, he's up. For four, five hours in the middle of the night. He really likes the 1 - 5 A.M shift. And we are up with him, for safety's sake. (Even after kid-proofing, we've seen removal of heating grates, eating carpet shreds, chewing on marbles, chewing up books, and so on. We *need* to be with him.)

And he's wired. Manic. Exhibit A:
 

Please, please don't give me tips about sleep. We've tried: early bedtime, late bedtime, melatonin, strong drugs, leaving him alone in his room, Epsom salt baths, warm milk, serious talks, driving him in the car, snack, no snack, getting out of bed, staying in bed. Don't even get me started on "sleep hygiene." (Sounds like a Very Special After-School Special.)  But as you can tell from the video, there's just something wired differently in our boy that tells him that 2 A.M. is a great time to be up and do gymnastics on your parents' bed.

It's awful. And yet it's our new normal. I've gotten great knitting done while "sitting up" with Soren. I've read lots of trashy magazines. And I'm learning more and more that there are so many things with kids that we just can't control.

So we think about this. All the time. We talk about it, to whomever is around. We argue about it. (Tip: don't argue with your husband at 3 A.M. about who is getting less sleep. There is no winner.)

And we're trying some new drugs. (And I must say, Grandma Moss is a hero for staying up with Soren when she's here. Bless you, Mom.) We're keeping our fingers crossed. But please forgive me if I need to kvetch with you about sleep issues. It's kind of a big deal around here.

Not today

I had such plans for a powerful post today. It's Autism Awareness Day, the start of Autism Awareness Month, and we've just received updated prevalence numbers from the CDC on autism (1 in 88 now). I was going to write about what this means, especially for the newly diagnosed children and their families. I was going to write about what our call to action is.

But not today.

Today, I just don't feel like being an advocate. I don't want to raise awareness. I don't want to be the picture of an autism mom. I don't want to schedule and over-schedule my child. I don't want to push him. I don't want to push at an IEP meeting. I don't want to be sleep deprived. I don't want to research therapies. I don't want to deal with insurance, doctors, or medications. I don't want to be held up as a graceful example of special needs parent. I don't want to worry. I really don't want to worry.

Today, I just want to get in my car and drive--alone. Anywhere. Maybe somewhere warm. Mexico, that's it. I want to sit on the beach and drink beer. I want to ruminate only about what color to paint my toenails. I'll stop at Nordstrom and buy four pairs of impractical shoes. Then I'll catch up on what those Real Housewives are doing.

Maybe it was a challenging night, or the fact that Erik's been gone a lot, or because my little guy seems overwhelmed a bit more lately. But today, the autism reality (and its media saturation) is not what I want to think about. Today, I want to escape. I want to forget, just for a little while. I want to be in a place where the only worries are what to wear and what to drink (flip-flops and sangria, I think).

And I know tomorrow I'll put on my cloak of advocacy again. My child deserves that, needs that. But in this hour, I'm just thinking about my beach in Mexico.

A love letter to my son

My dearest boy,

I am so blessed to have you as my son. What an exuberant, complex, funny, cuddly, and adorable little man you are.

I love that I can see you smiling from behind, because your cheeks get apple-round. I love that your favorite thing in the world is to go swimming with Daddy. I love that you still prefer to fall asleep in the crook of my arm.

My day is brightened when I see you first thing in the morning, wrestling in bed or touching my cheek. I love your obsession with books and the way you tear up a bookshelf looking for just the right one. And I get such a kick out your new-found somersaulting skill. I think you're quite proud of that one, too!

You are such a brave boy. Some situations, events, and places are frightening, even excruciating for you. You try so hard to let us know why, and then you often surprise us by overcoming your fears and happily delving right back into those places.

You've shown me so much about how silly expectations are and how much better life can be when we stay in the here and now. You reveal to me every day how limiting words really are and how much we can communicate without them. You made me understand how a heart can be broken--wide open.

But let me be real clear on this: Your role is not to make us feel a certain way. You don't ever need to change our perspective, although that's exactly what you've already done. Your presence alone is what we adore. There's nothing for you to do to earn our love. We're already completely smitten.

Much love,
Mama

A lesson in waiting

Soren and I ventured to Arena Sport's new bouncy house area-- part of a huge old Magnuson hangar filled with bouncy house structures. I had this idea that Soren might like it, since he generally loves bouncing (especially on our bed). And he did love it--but in his unique way.

The hangar is a cavernous open building, filled with a health club, a kids' soccer club, an eating area, and this bouncy area, among other things. Talk about sensory overload: it was loud and echoing, filled with people, and with these giant structures that Soren hadn't seen before. So we took time for Soren to get used to it--I'm talking at least half an hour. First just sitting in a corner, biting nails, then rolling on the carpet in a patch of sunlight, then running back and forth among the bouncy houses, and finally, entering one of the structures on his own and gleefully discovering that, hey, you can bounce in this thing!

It was such a good reminder for me that Soren may need more time to process his surroundings. If I hadn't waited so long with him as he adjusted, he never would have had that sheer joy of jumping. I'll admit that many times I've seen him in distress or even uncertainty and just bagged an activity, perhaps out of my own embarrassment or impatience. (Oh, so you don't like sledding after 30 seconds? Bam, let's go back inside.) Thank you, little guy, for nudging me out of my expectations and letting me enjoy the moment with you.

Cabin Fever

The Seattle area has had four snow days in a row. That means four days of no school, no therapies, no babysitter, and mostly no Erik, who is out of town, waiting on delayed flights. For a kid who doesn't play with toys, it's a struggle not to be bored, and for his mama, it's a struggle to not resort to lots of iPad time to fill the hours.

By about the second day of the saga, I decided I was going to be easy on myself and ignore the good-parenting demons (you know--"you should limit his screen time," "he needs balanced meals all day," "you should be spending quality time, mostly Floortime, with him," "you should try to engage as much as you can). I decided it was going to be a parenting snow day for me. So we watched way too many iPad movies, ate when we wanted, had popcorn and wine for dinner (wait, that was me), and stayed in our pajamas most of the day. And you know, a weight lifted after I gave myself permission to bend those parenting rules I set for myself.

In the day since the snow melted and Erik finally came home, I've been thinking about that weight. I'm wondering how much of my angst about parenting Soren during the darker days stems from me--from my insecurities about what "people" must think when we're out in public, worries about what I'm not doing for him in terms of therapies and interventions, ruminations about the speech and behavior Soren had when he was younger and how much more he may regress. These are my issues, not Soren's. I'm making parenting him so much more complex (and less fun) by lugging around these Jenny issues and confusing them for Soren's autism issues.

I hope I can remember this insight even after the last snow melts and we can walk outside again.