Arousal at a museum

Sorry about the title. I couldn't help myself. Also, sorry if your Google search brought you here with completely different expectations.

However, occupational therapists speak quite a bit about arousal. And in the case of SPD kids it's 1. not always good, 2. not always easy to spot, and 3. not easy to come down from. Let me explain.

Henry has had a rough couple of days filled with moments of meltdowns. One reason, suggested by his dear therapist, is that his arousal level gets too high and he isn't recovering well. This means he can look like a completely normal 2 year old at a children's museum until later that night at 8-11 pm when he can't stop screaming.

So, as it turns out, the sudden spikes of emotion are actually slowly brewing caused by various visual and auditory stimuli. When he's running around wild and working himself up into a tizzy that I think is "getting all his energy out," he's actually going to an elevated whirling dervish state that specifically doesn't help him.

A great thing about the STAR Center is the parent education hours where the therapist sits down and answers questions and discusses observations surrounding treatment. It's kind of a pain to figure out what to do with your child during this time since you have to be there without them. But I find that's pretty much always the case when taking opportunities to learn, be refreshed, and become a better parent.

Meanwhile, I just hope my son isn't getting too aroused. Gees, isn't it a little early to worry about that?

Sorry again. Couldn't help myself.

And sorry Henry, for this post being totally and completely embarrassing to you in 12 years.

A boy and his doll

Today, I understood that life can be scary when you're a little guy like Henry. 

Henry has good taste. He likes the feel of cashmere, the music of Johnny Cash, the taste of Chick-fil-A. I spent too long to admit finding a drive thru chicken house to get the fried nugget goodness for the two of us today. Henry loved it. 

He loved it so much that he crammed way too much into his mouth without chewing and began to choke. Really choke. Like, life-flashing-before-my-eyes-adrenaline-rush-save-your-baby-choke. After a finger swipe (thank you 10th grade CPR) and a slap on the back, he was really scared and so was I and soon after he was quite obviously over the chicken. When kids are in a fight or flight mode of self protection (which happens with sensory over responsiveness), they lose their appetite. Another meal missed. 

Earlier in the day, Henry's therapist suggested we get him a doll to bathe so he might feel more comfortable with the tub. After determining that the Bathtime Baby Doll with pink accessories was less feminine than the purple My Little Pony Bathtime Baby, we came home from Target with a very excited little man. 

He carried, fed, bathed, changed, read to, and put to bed that baby doll about 38 times in three hours. "Caring for" his baby puts him in control and makes him seem so much less...scared. needy. worried. 

Right now, I can't figure out how to make him less scared when he chokes, or can't feel gravity like the rest of us, or sees other kids moving toward him too fast. 

But I can give a boy a doll. 

Bowl of spaghetti and a bath, Part II

Part II of why tonight was amazing. Bath time.

Last week, we told Henry's sweet therapist about his difficulty with bath times. She asked the obvious question. How often does Henry get a bath?

Weeeeeeell, I'd say it's about once a month. Yep. For a little boy. Who never stops moving. The poor little guy is absolutely terrified of the tub and apparently tortured by the feeling of water poured on him.

I used a couple techniques I'd seen the therapists use, like having a toy go through a track of foamy soap, having the train jump in the water, and taking turns with other toys until he was ready to get in. And yes, Oedipus, I did have to get in. It was a long process, but he got clean with no screaming.

Then it was new Thomas pj's, an Elmo book, and out like a light. Hallelujah.

Bowl of spaghetti and a bath, Part I

Tonight, Henry had a nice bowl of spaghetti and a bath.

In case you didn't catch that, I'll repeat it. Henry had a nice bowl of spaghetti and a bath. This is a normal night for most toddlers. This is slightly short of a miracle for us.

Let's start with food. Mealtimes at our house are typically stressful events that upset everyone and where no one actually eats. This is heartbreak for a family of foodies whose most enjoyable times in life involve food, laughter, and a huge country pine dining table with wine stains on it.

I read the books, people. I know you're supposed to sit together, encourage new tastes and textures, and let the kid get messy while he's learning. Except none of those things are easy for SPD kids.  1. Sitting-nope. 2. New tastes and textures-Ha. 3. Get messy-meltdown.

When all you want is your kid to gain weight, you'll throw a lot of your philosophies out the window pretty quick. But I'm trying. I bought a cute little tray for him at Pottery Barn Kids and am developing routines and convincing him to sit for meals. There are other related issues with SPD like difficulty chewing, digestion problems, and (some folks say) food allergies. We're meeting with a rock star feeding specialist at the STAR Center while we're here to help us figure out how to put some meat on those bones. Stay tuned.

But for today-Give thanks for spaghetti.

It was a hard day

It was a hard day. I'd say horrible, but little man is currently enjoying an Elmo flick, and I a glass of cabernet from back home. It's now just Henry and me in Denver for a few days and, as the good people at Whole Foods who saw my tear streaked puffy face can tell you, it's been a rough start.

I hesitate to write about this because I really try to focus on Henry's gifts and the moments that give me hope. But today, I was reminded that his challenges can be really hard on all of us.

The day started with some general crankiness. (see above photo entitled "Breakfast") Later, as we said goodbye to his dad and sister at the airport, Henry starting crying, which is totally normal for anyone. But Henry, and other kids with SPD, often can't come down from emotional stress. Other little things began setting him off. He threw his video player when the battery died and almost choked after stuffing his mouth full of crackers. His stress level got so elevated that he screamed for 20 minutes while I tried to navigate an unfamiliar highway. The kind of screaming that makes you pass out. I'm mostly sure he didn't pass out. Mostly.

Actually, I'm pretty sure he dropped off to sleep.  He hadn't had a nap in two days, and after being in the car for a couple hours, he was understandably tired. But it's times like these that I feel so helpless and teeter uncomfortably on the verge on the hopeless. The meltdowns make me lose perspective.

But the truth is, the meltdowns are fewer and farther between. After his nap, we went to Whole Foods where I accidentally spent $25 on some stupid toy and walked around the parking lot with one of those race car shopping carts for 30 minutes to cheer up the little man. It cheered me up too. But man, it was hard.

Wow

Being a California boy, Henry was 18 months old the first time he noticed rain. That morning, as I carried him to the car, a few light drops fell on his head. He reacted by screaming for about 20 minutes, holding on to his head, unable to, what they call, regulate.

I can usually predict what is going to set him off, but I've been wrong more and more often lately. Which is great. Last night in Denver, the snow started falling around 6 pm. As I carried him to the car, wondering how he would react, the soft big flakes fell all around his head and face, resting on his eyelashes and cheeks. He looked at me and said, "Wow."

Today our morning appointment at the Center was canceled due to the storm. This gave us time to do some good post-IHOP-suburban-suites-hotel-parking-lot-hill-sledding. He agreed to ride the hill with me after some convincing and watching Dad and Sister do it. Moving out of control at high speeds in cold, wet slush would not typically top Henry's list, so I naturally predicted screaming.

 Instead, he was silent until we got to the bottom of the hill. Then, "Wow."

A wise friend told me to fight the urge to define what Henry won't do, wouldn't want, or can't handle. He'll let you know, he said. Let him show you what's possible.

So good news. At least for today, we can handle snow.

Something new

Today was our first full day in Colorado and Henry's first assessment at the STAR Center. As is our habit when moving as a pack, the family was running a bit late. On the way into the building, Henry tripped on the stairs and split his pout perfect bottom lip. Chalking it up to the new Thomas the Train backpack that is slightly too big for him, we scooped him up, comforted him, and went inside.

He warmed right up to his new therapist and spent a couple hours playing as she scribbled down notes. They have these cool Stokke chairs that are supposed to provide foot, leg, and back support. It's like IKEA meets Dr. Scholls. He sat in the chair performing the dutiful tasks for a little while before getting cranky and fidgety.

For some reason, when it came time to hear the results of the assessment, I wasn't expecting to hear anything new beyond what I'd come up with from doing my own research. Yeah, because as it turns out, I'm under the impression that investing a few hours reading a couple books qualifies you to do that kind of thing.

Anyway, one thing the therapist said is that Henry seems to have a postural disorder. This is a difficulty stabilizing the body during movement or rest and usually accompanies low muscle tone and poor balance. At first, this doesn't sound right. Then I start remembering his occasional trips and falls and his active boycott of sitting in chairs or carseats. If a child has trouble holding his body while standing still or sitting, he may deal with that by constantly being on the move. And that sounds just like Henry.

It's never easy to hear about a new problem. It's like we lifted up a flap on one of those origami fortune tellers and it said Sorry, Something New to Deal With. But learning a new piece about Henry doesn't change anything about who he is. It only changes how we will respond to who he is.

Gifts up in the air

We have avoided airplane flights as best we could the last two years. (also see future posts on avoiding restaurants, crowded places, and quiet places). There's typically a lot of screaming, which I admit is pretty common for most toddlers. Let's just say we go beyond common.

Yesterday was an outright gift. As soon as we sat down, Henry put his head on my lap and slept soundly for the entire two hour flight. It was as though magical sleep fairies kindly greeted us in row 11 saying, Welcome weary travelers, here is a little grace for you. I was actually a little self conscious that people thought I had drugged him for the flight.

As I sat there with his precious little head on my lap, reading an entire book in peace (Style by Kate Spade which is fab by the way) and listening to the outrageous beauty of Sigur Ros, I realized just what a beautiful moment it was. I thought to myself, who am I to have this incredible being look to me for truth? For comfort? A tiny part of me believes Henry is a little too good for this world. But for a brief and uncommon two hours, we held on to peace together in this place. Up in the air.

Hair cut heartbreak

Funny thing about Henry. He does not like hair cuts. Or nails trimmed. Or ears cleaned. This makes keeping a little man looking debonair a challenge. Thankfully, his wonderful father is inordinately interested in mastering various skills and has committed himself to learning how to cut hair. A pair of old kitchen scissors and a quick You Tube tutorial and we're all set.

But the real secret to Henry's cooperation is, as with most children, bribery. This child who has a dislike for darn near every taste and texture has an Achilles Heel. Candy.

Unfortunately, we have to keep shoveling the chocolate in his mouth to keep it too busy to scream. I think today he had about four Reese's pumpkins. Yes, from Halloween. Keeping in mind how much sugar that is for a 25 pounder, it's a miracle he's sleeping right now.

I don't know what the sensory processing connection is to hair cuts and nail trimming. I'm really hoping to get some tips this month on how to make a hygienic life a peaceful life in our house. Don't even get me started on bathtime.

With any luck, Henry will grow up and adopt Western standards of cleanliness. But if God had meant us to be clean all the time, He wouldn't have invented cologne.

On the menu: Sensory Diet

Every Saturday, we head to a cute and clean little gym for Henry's gymnastics class. I can't prove causation, but I can tell you there is a significant correlation between his weekly hour of jumping, hanging on bars, rolling on the floor and an improved mood. Occupational therapists recommend a balanced sensory diet including things like trampolines, bouncy balls, and pushing or pulling heavy loads. These help give the input to kids that need alerting or calming through sensory input. Check out The Out of Sync Child for a good discussion of this (and every other topic on SPD).

Henry loves gymnastics.  He's super active and coordinated and to be honest, I'm not ruling out a future career as an Olympian. Plus it gives him a chance to experience being in a class with other kiddos. If only I could figure out how to get a trampoline onboard for the plane ride to Denver.

It happens when it happens

There is a lot of wait and see with SPD. We've been waiting a LONG time for the little man to be verbal. It's been slow in coming, but with two speech therapy appointments a week, Henry's mastered about a dozen words and as many signs.

Tonight, he had his first phone conversation. Appropriately, he chose to have it with his Mimi, the amazing grandma who is his strong advocate when his own mama grows weary. My mom reminds me what is possible, what is important, and what I need to do to give my son the world's best opportunities.

It wasn't much, but there it was. Maybe the next first will be staying seated for an entire meal. Or eating an entire meal. Or eating. Maybe it will be going to sleep without a struggle, or having a bath without screaming. Someday it will be "I love you."

However long we have to wait, our job is simply to love.  And love is patient.

It is what it is

My sweet, charming, and frankly gorgeous son is named Henry. He's two. At 6 weeks I thought he was blind. He isn't. At 14 months, I thought he was deaf. He isn't. At 18 months, I thought he was autistic. He isn't.

He is, in the words of his sage older sister at age 5, "in particular".

It often seems like nothing quite "in particular" can be identified as the cause of his quirks, his meltdowns, or his health mysteries. It appears to be related to sensory integration, sensory processing disorder (SPD), and what people tend to call "sensory issues."

What his big sister meant, is that Henry is particularly himself. His struggles are confusing and difficult, but they aren't the whole story. We cry tears of admiration and pride in equal amounts to tears of frustration and worry.

We're headed to the STAR Center in Denver in a few days to work with a team of doctors and researchers treating and learning more about SPD kids. This is our journey. Join us.