Thursday, June 10, 2010

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.

Wednesday, June 9, 2010

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.

Sunday, June 6, 2010

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.

Saturday, June 5, 2010

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.


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.

Thursday, June 3, 2010

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.

Tuesday, June 1, 2010

SPD in summer

Summer means hot sun, pools, sand, and messy food (think about it-juicy watermelon, saucy barbeque, buttery corn on the cob, drippy ice cream). All these sensory landmines give me some anxiety about enjoying summer with a kid with SPD. But the good news is we're starting out the summer back in Denver at the STAR Center.

Henry's therapists were surprised and impressed today with the progress he's made (using his core muscles to balance, having more words, and putting on 2 pounds!). Though sometimes it feels like SPD defines everything we do, when life is happening fast, it's easy to miss his improvements and growth. Now that I'm here and focused I'm realizing just how much has changed since two months ago.

The OT said today that he would not have made these strides without the efforts back home. And while I don't want to admit that it was really nice to hear, it was. I've heard more than a few times from other folks suggesting that maybe he'll just naturally grow out of it. I'll do everything I can for us to never know if that's true. Even if that's spending two more weeks watching all night HGTV on loop because I can't sleep in hotels.

The fact that no one has ever heard of SPD makes me still feel a little crazy sometimes. When the rental car guy asked me why we were in town, I paused. It's a long story, I said.

A long story that's changed me and my family forever. Not to be dramatic but I feel as though for the first time, I see the world. I see a little more of its fullness of struggle and love.

That said, I'm sure this isn't the whole story. It's just summer.