Dirt Boy

I've never been a super outdoorsy type a girl. But recently, I've been giving it a shot. Why you ask, she who loves heels, skirts, cafes, books, etc.? Because I think it's really, really good for Henry.

I just read a beautiful book about a boy with autism whose father seeks healing on the backs of horses in Mongolia. Horse Boy is a must read for anyone who is or wants to understand what it's like to be a parent of a nontypical child. Seriously. Go read it. Really.

But it also really inspired me to get outside with Henry. He has always been somewhat calmed down with a soft breeze or by listening to birds, watching bugs or collecting rocks. It's odd, because indoors, the physical sensation of having dirt or water on him normally sends him into a tailspin. But not outdoorsy dirt. (see above photo for proof). I don't get it-but it works.

While hiking the other day, he was confident, energetic, adventurous. He was everything he is without the fear and worry of his senses misfiring. He embraced the world out in it's true nature. The real world was his for the taking.

We just recently moved to a new town, with a new house, new friends, a new job, and now, a new (and his first ever) preschool/daycare situation. I am, admittedly, freaking out about it. But maybe Dirt Boy is also Preschool Boy. I'm not going to be the one to decide for him.

Stay tuned.

An Open Letter to the Respectable Public

Lately I’ve noticed a few more of your longer-than-necessary glances in our direction when I’m out with my son, Henry. I’d like to say that it’s his magnetic smile and attractive wardrobe, but I’m afraid that’s not always the reason. It seems that my son’s sensory behavior has been capturing a bit more of your attention than it used to. For instance, you look slightly puzzled when he lays down on the booth in restaurants, concerned when he clings to me with his head buried in my neck during fireworks, uncomfortable when he can’t respond to, “What’s your name?” Unfortunately, I don’t often have the time, energy, or relationship to explain to you that he doesn’t like the way his back feels when he sits, that the noise of Independence Day probably makes his head feel like it’s going to explode, and that his tongue and lips don’t often cooperate with his brain.

Perhaps it’s becoming more obvious that something in particular is going on with Henry since he’s looking older these days. No longer a mischievous and understandably crabby toddler, but a tall, almost 3 year old boy headed to…preschool?

Frankly, I myself am a woman who deep down prefers to be admired and understood, heck, ignored rather than critiqued, so this is understandably unpleasant. You see, good people of the public who perhaps wisely raise an eyebrow at me, the mother who can’t or hasn’t or doesn’t care to teach her child proper manners, I’ve got a great narrative to share if you let me explain. I could tell you about the swell of my heart to the point of stretching and breaking that happens darn near every mealtime, bath time, car ride, and bedtime. I could tell you about how many referrals, doctors, tests, and insurance journeys I’ve traveled barefoot and thirsty. I could tell you about fears and worries and missed appointments and missed milestones. I’ve got a really good story.

So while part of me wants to explain all this so you won’t judge or hide out at home so you won’t notice, instead I’ll try to focus on us. And the way his father and sister cheer and jump up and down when he eats one bite of hot dog or gets a word just right. And the way he responds to praise, parading like a peacock when he successfully completes a puzzle. And the way that the struggles have brought us all nearer in spirit to each other and to those who love us.

So, upright citizens, it actually isn’t that significant or important to me that you understand this, but my kid’s not misbehaving. He’s doing his best to figure out this world and sometimes it seems like I’m right there with him. I’ve got a really good story because it’s both an adventure and a love story. And, as I’m sure you know, all that matters for a good ending is that the main characters never give up on each other.

Yours truly, Mom

Turning the page

     

Sometimes I can only gauge Henry's progress on the simple things. Is he screaming? Less. Is he talking? More.

Thankfully, the bright and big-hearted therapists at STAR see the details. "He's using a lateral tongue tip suspended equipment elevated arousal verbal cue!" I made that one up.

But they do have some technical ways to describe a simple message. Henry is doing really very extremely well. In fact yesterday, he was referred to as a feeding therapy rockstar. It's hard for me to wrap my head around this. Can all the hopes and prayers pinned on ball pits and swings be changing his life? Can playing with food and chewing demonstrably be shaping who he will be? The fascinating and mindbending answer is YES. I always expected OT to work. Now that it has, I feel like crying and smiling and falling asleep.

Coming to STAR might have been the best decision we've ever made. Now that it's over, it seems like a chapter in Henry's book is coming to an end. And I don't know what's next and I don't know how it ends. But I think it's a romance. And it's not going to be easy reading. But I know I can't put it down.

You kiss your Mama with that mouth?

Look at that sweet little mouth. Who would know that those tiny lips and tongue don't work quite right? Yet.

Unlike typical babies, Henry never complied with our attempts get him to repeat "ba ba ba" and he never put toys in his mouth. For almost 2 years his kisses were more like Swahili tongue clicks.

Those oral motor milestones that Henry confidently eschewed put him about a year behind in that stuff. But we've seen incredible progress in just the last week. His ability to repeat sounds has exploded and he's chewing and swallowing better than ever.

This week we've been listening to the fabulous new Natalie Merchant album. Henry's been continually imitating violins and trumpets, drum snares and piano, scatting like he's Ella Fitzgerald. He parrots a high pitched "beep" when I lock the car. He's doing animal sounds and singing, in a manner, tunes written by someone other than himself. For the first time he is hearing and processing and producing sound with thoughtfulness. Awesome.

Henry now kisses normally. And when you've got kisses and smiles and love, words seem secondary. But the words are sounding really really good.

Bright. Loud. Soft. Musical.

Not gonna lie. Preeeeety tired right now. It's 1:04 AM and little man just fell asleep. First of all, notice the peeling sticker in the pic. Okay, here's the story-

Big sister gets to town today which is fantastic (she is the love of Henry's life at this stage) and we all get very excited and probably have a little too much fun. So whether it is the laughing and running around, skipping the nap, or the many, many gummy worms, Henry gets overexcited. And can not come down.

I am not kidding. The kid can scream for days. So to avoid hotel security coming to knock on my door after many, many attempts at bedtime, I decide to let him play until he finally fell asleep. Problem is, he can not regulate by himself. So it takes until after midnight as he's "swimming" on the carpet, running into walls, and hitting me with my book for me to finally get him to lay down while I hold him tight to my chest until he's heavy with sleep.

As he's laying down, he moves my dress a little so his cheek can rest on my skin. And it occurs to me; Henry feels more. He experiences the world more. And in a twisted optimistic moment, I see it as a gift. How many artists, musicians, poets, playwrights, feel the world more deeply than the rest of us?

Henry's going to be the man who can't forget the smell of his first love's hair. Who can't stop thinking of ways to describe a sunset or a symphony. And who will probably always have very high thread count sheets.

There are all sorts of books and opinions out there regarding medicating the tortured artists of our time. While I know Henry needs therapy so he can learn to overcome some of the fear surrounding his sensory over-responsivness, I hope he will retain a part of the way he feels the world. Bright. Loud. Soft. Musical.

Neurons and Stickers

Two hours of therapy a day may not sound like hard work. But in occupational therapy terms those two hours are filled with some serious neurological limit stretching.

For the last couple days, Henry has become very fixated on situating his napkin in a certain way during "food school." His therapist explained that when asked to do something uncomfortable, like touching applesauce, Henry will try to exert greater control over his environment. This explains why some behaviors of SPD are often mistaken for OCD. This also explains the stickers.

The last few days Henry's gotten stickers on the back of his hands after therapy. During bathtime the first night here, I realized he was not letting those stickers come off if Elmo had requested it himself. I let it go for a couple days until the vague shreds of Spiderman and that gross gray adhesive residue was all that remained. I have a teensy tinsy anxiety part of me that can't stand that kind of thing, so at a distracted moment I grabbed his hand and scrubbed it off.

Mistake.

After being presented with the Worst Mom in the World Award, I tried to soothe the incredible meltdown that followed. I bribed him with a new sticker but he covered his hand and screamed every time I came near. We're still working on getting some trust back around his hands. Not super proud of that.

I realize with his neurons having some major work done this week, Henry's controlling tendencies are on full blast. Problem: someone else in this hotel suite has controlling tendencies. So, I'm gonna give on the stickers. And that is not easy for me. But it's harder for him. And I'm the grown up.

Defiant. But cute.

Because I waited so long to hear Henry speak, even the way he says No makes me smile. Think of a pixie cuddling a puppy on the back of a miniature horse wrapped up with a bow in an Easter basket. That's how cute it is.

But one way in which Henry is completely typical is his 2 and half year old defiance. With a sensory kid, my normal parenting strategies are less than effective. I'm not saying we have it harder than other parents, but it's certainly different. My daughter at this age would say things like, "I feel as though perhaps I don't care to go to tea today Mommy." Okay, that's exaggeration, but not by much. She did ask for a chandelier at this age.

I realize that Henry is, and has always been, in control. Believe me, I do not like that this is the case. But he could make my life miserable if he wanted to. He has the ability to scream for hours if bedtime doesn't go well. And guess which one of us (barring losing consciousness) is going to give in first. He can refuse any and all food for days if it's not presented in the right way and make a road trip worse than certain forms of tortured now ruled unconstitutional.

The main difference about parenting Henry is the time it takes to make anything work. I often feel like the funny but average looking bachelor trying to woo the prettiest girl in the room onto the dance floor. I know there's almost no chance, but if I say the right things and smile confidently, she just might buy it.

Love and Logic is a parenting strategy that I find brilliant. It combines choices and their consequences with grace and real forgiveness. I've just started to be able to communicate well enough with Henry to see how it will work with him. I'm sure I'll need to amend my style a bit for his particularity. In the meantime, good thing he's cute.