Sunday, November 21, 2010

Cry E P

Ever heard of an IEP? I hadn’t either. But when your child turns three, if there is concern about developmental delay, the school system puts them through additional assessments and determines the types of therapy they qualify for. I gotta say, I am really thankful for an educational system that foots the bill for therapy at this stage. (Incidentally, my state is more than $20 billion in debt, but this is when I thank my dysfunctional Golden State for its concern for the least of these.)

Anyway, from what I’ve heard, the IEP is never easy. In my experience, this is because it’s never easy to drive out to a school you’ve never been to and sit in a child’s sized plastic chair for two hours and listen to people you don’t know tell you about all the things that your baby boy doesn’t do right.

There’s not a single mention of the way he holds your face at night after you’ve read your eight millionth rendition of Goodnight Moon. Or the way he climbs into your lap at the dinner table with the sole purpose to charm you so you’ll quit trying to get him to eat. Or the way he uses his little voice to say two of his very few words and ask, “What Mama?” when even his tiny soul can tell that the day has become too much for your tired heart.

But the IEP is not about strengths. It is about needs. Special needs.

Before our IEP, we were feeling really good about the progress Henry’s making. Because he’s making really good progress. But the optimistic moments of a hopeful parent do not equal the critical and necessary eye of educators. And I’m not saying they’re always right, and I’m not saying they always focus on what’s really important, and I’m not saying they really know my son.

But they know what he needs to be ready for school. They know he can’t sit right, that he’s not coming close to holding a crayon correctly, and Lord knows he’s not talking enough.

It’s not easy to get in the car after the IEP and let the tears well up on the way home, and it’s not easy to start dinner and try to remember everything and explain to your husband what they said and why it hurt and why they’re right. It’s not easy to feel like anything other than a failed parenting experiment when you subsequently lose the IEP paperwork for a week or two.

But then, oh then. Then, you miraculously find the paperwork, you rearrange everything to get him to three classes a week for speech and occupational therapy, and the teachers gush about his sweet nature and praise his strong progress. He comes home with art projects and starts to say r’s. You pray for his brain, his mouth, his hands every night. That they would be strong, that they would work.

Then, one night, after the weather’s gotten cooler and the days have shortened, you put on Chopin. You look over and see him lost in the beauty. Eyes closed, head and arms moving slowly and in perfect time. They don’t put that in an IEP. But that’s what he is. And he’s yours.

Monday, September 20, 2010

Since the First Year

So, Henry's dad is a real find. The day we met he was handsome and kind and smart as a whip. Moments into our first conversation, I ended up blustering something about justice and winning an argument. Not much has changed.

The year Henry was born was a hard one. You might guess that a child that screams for the better part of 12 months would be hard on a marriage. You’d be right. It’s actually a little bit like being tortured. And when you’re tortured, you can be convinced to do horrible things to people you love. Like forget how handsome, kind, and smart they are. And you bluster something about justice and win an argument because “I don’t DESERVE this!”

I’ve learned a little bit since that year. First of all, discussions of justice are best left to grad school and the U.N. Secondly, the screaming can get better. Henry’s occupational therapy helped tremendously toward a more peaceful life for all of us. Lastly, I’m pretty sure that the way you treat the people in your home might just be the most important thing you do in this life.

No one would be surprised to hear that a toddler with SPD has tired parents who don’t have a lot of carefree weekends in Tahiti. But here’s the super special secret about being married to someone who raises a kid who has never said his own name or eaten a meal the size of which would be appropriate for a small rodent; He GETS it.

People who love the same things often have an instant connection and understanding. Henry’s dad knows me perfectly because we love the same difficult, beautiful, complex, and screaming little boy. So we keep trying. To know and be known. To love and be loved. Everything else is just blustering.

[This post was originally written for SPD Foundation blog]

Monday, September 6, 2010

A Little Bit Perfect

The other day, I found myself saying something unbelievable as I explained SPD to a new friend. It went something like this, "You know, it's actually a little bit hard to identify Henry's particular symptoms these days." WHAT??!?

Some folks asked me how the first day of preschool went. I'd say it was a little bit perfect. There were no tears at drop-off- Oh wait, that's not true, I was crying a river and spontaneously hugged a kind looking stranger woman who was walking past. Henry met a friend whose name he can pronounce perfectly and is excited to go back tomorrow. The teacher's only concern was that he hadn't eaten snack-Ha! Get used to it.

We are living in a parallel universe lately, where a little boy that lives in our house speaks a language that sounds a little bit like English, knows other children who he plays with, and even takes baths. See the photo above entitled Hey, I'll Try Anything To Get This Kid Clean. That night, it took wearing a winter hat for him to be happy in the tub. No problem.

I'm the type who believes in God. And I know a lot of people who asked God to help Henry out. For some reason, it's a little bit hard to believe that maybe we're over the worst of it. And maybe we're not (believe me, I'm no happy clappy everything's victorious and don't you know we're all going to be fine type of God believer, although I guess if you've ever read this blog, you know that by now).

But tonight, as I look at Henry falling asleep, I have this teary idea that he is absolutely perfect. And I'm going to go ahead and say thanks either way. Thanks for making him a little bit less afraid. A little bit less alone. Thanks for giving me this little boy. The one who says something that sounds a little bit like I love you. And I ask myself, don't you know we're all going to be fine?

Thursday, September 2, 2010

Letter to Henry on the first day of preschool

It's not easy to let you go into the world. I've spent a lot of time protecting you, explaining you, sadly sometimes hiding you away in a safer place. But it seems that today is the day you start a bit of your journey without me.

Let me start by saying that you make this world richer and fuller. Sometimes I feel like you're my heart walking around on this planet. That every one of your bumps and bruises hits me full in the chest and every one of your struggles drags me out of bed and sends me to work in the quarry without enough sleep, head throbbing with more than enough wine. But what would I be without a bruised heart? Not full. Not human.

Let me also tell you that you have an enviable heart. It moves with all you have, with equal parts love and fury. But your spirit is infectious, and people are drawn to you, and you are loved. Don't hesitate to share yourself with others. I echo what your sister advised last night. "If someone says hello, say hello back." Even if you can't say your L's yet.

Let me end by saying that you are exactly as you were meant to be. That every bit of you was designed with purpose, with intent, and with grace. That your bumps and bruises and struggles are part of your story, and that until I belong to the ages, I will undoubtedly be here after each one.

We are yours.

Love, mama

Sunday, August 29, 2010

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.

Sunday, August 22, 2010

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

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.

Sunday, May 9, 2010

Simply Beautiful

My husband and I often remark how complicated adult life is. Who can remember to fix the rear break light, return permission slips, pay the gardener, file taxes (or a 2010 extension), floss...?

After scheduling a sought after appointment for Henry months ago, guess which over-extended family forgot to show up? After considering tattooing upcoming appointments on my wrist, I did what one does when one needs to be fooled into the idea that one is in control. I developed a Dewey Decimal system of Henry's medical records in an accordion file.

But thankfully, today is Mother's Day. A day when crayons and crepe paper are all that's needed to make a woman believe she is loved. So simplicity is de rigueur.

The best gift I got came yesterday. It was the first time I've ever heard Henry put two words together. He ran into my room and came close to my face while I was sleeping.

"Hi Mom"

Simply beautiful.

Tuesday, April 13, 2010

We're fine

A lot of people have been wondering how we're doing. Was it the desperate depressing last posts that had you concerned? Don't worry, we're fine.

We've been back home about five days now and Henry is having a little transition trouble. Who knows if it's leaving the routine and the hotel room we called home, or not being with me during the day anymore, or detoxing from daily intensive therapy.

But we're doing baths every night, and thanks to the amazing sister (see above photo entitled "Snuggle") who's happy to join in, Henry's sitting in the tub, splashing around, and begging to stay in and play.

This is huge.

In other news, we've ordered a special toddler vitamin rich weight gainer and two Dr. Scholls meets IKEA chairs for the kids. We went to a somewhat overwhelming geneticist appointment yesterday at the renowned UC Davis MIND Institute which happens to be here in town. It was just a consult, but opened up the unattractive possibility of Henry having an MRI. More on that in the future, I'm sure.

Other than that, things are pretty much the same. But also totally different. I know the last few weeks have changed us all for the better. But we're still just a few more steps ahead of where we were.

And things aren't really fine. But we're fine.

Thursday, April 8, 2010

Time to go home

We're headed home tomorrow. I'm definitely ready to wake up in my own bed, have over two dozen pairs of shoes to choose from, and have our little family back together.

The other night, Henry woke up screaming so I let him sleep in my bed. He was really jumpy in his sleep, moving around all jerky like a goldfish left on the kitchen counter. I started to wonder if he always sleeps like this. Like his unconscious is either in a ball pit or a bar brawl.

I mentioned this to his therapist who immediately thought that some elements of his therapy were becoming a lot for his little brain to handle. Some kids sleep restlessly after this crazy interesting listening therapy designed to eventually retrain the brain's processing. The last couple weeks, little man wore headphones attached to a mini-backpack that played Mozart or Gregorian chants during the climbing, jumping, and swinging of occupational therapy.

So, we decided to take a couple days off the listening therapy to let his brain rest. In fact, this next month at home is intended to let all this intensive work settle in. This is a hallmark of the therapy methodology developed by Dr. Lucy J. Miller and I'll tell you what, I'm thankful.

This experience has been equally hopeful and heartbreaking. I love my little man and I love all of him. But I'm tired and it's time to go home.

Wednesday, April 7, 2010

I don't want to write this

I don't want to write this. I'm really mad. And I don't want to sound negative. But I'm pissed off. And I'll warn you that there is no hopeful wrap-up at the end of this post.

We met with an amazing feeding specialist at STAR yesterday who is world renowned for her work with kids and their eating issues. She and a team comprised of a pediatrician, an occupational therapist, and a speech therapist watched Henry and me share a meal of soy yogurt, crackers and soy cheese behind a one-way mirror. After that, she came in to watch him up close and then they weighed his tiny little body and wrote up their report.

I'm mad that the news about how my boy eats, is not good news.

The team is incredible and the way Dr. Toomey explained his difficulties to us was just short of messianic. She spent three hours telling me exactly what is going on in his little mouth and why he stuffs it full of food, melts down at meal times, and chokes.

But I'm mad that his tongue doesn't work right. That he can't chew. That he has the feeding skills of a 6-9 month old. That he's anemic. That he seems to be allergic to a bunch of things. And it makes me cry. And it's frustrating. And I hate it.

And I don't want to know that his road is even harder than I knew. And I didn't want to write this. But it's all part of it.

Sunday, April 4, 2010

Bathtime triptych

*this is me, henry, offended and skeptical at the mere mention of the thought of the possibility of a bath*

*here i am, the next day, happy to be playing near the bath. i must point out, however, that i am clothed. happily clothed.*

*this morning, i promised to relinquish my birthright as first born son if my mom would let me play in the tub.*

*i still haven't sat down in the water. don't push your luck*

respectfully yours,

Friday, April 2, 2010

Shoes. Meh.

I love shoes.

Henry does not share my passion. In fact, I have bought too many pairs of shoes for him that have gone unworn due to his refusal (imagine little man's adorable furrowed brow and shaking head).

Two pairs have thus far met with his approval; Pedi ped sandals worn to bits of leather clinging together by frayed threads and Converse sneakers with velcro and an eventual scent that warranted their destruction.

But now, drumroll...we have found a third pair. I think these cute Merrell trail runners appropriately capture the Wilderness Boy image with some hipster orange thrown in. Of course, I'm sure that's not why Henry likes them. Like a lot of things we've discovered through trial and error, they just work. Phew.

A lot of SPD kids have trouble with socks and shoes and clothing. The seams on socks and tags on shirts are particularly bothersome for some kids to the point that they can't concentrate on anything else. Going without socks is a favorite of Henry's, which I'm guessing is part of the Converse olfactory unpleasantness.

Soft® is a fabulous new line created by Jessica E. Ralli, a mom and special education professional in New York City. The designs are superb, with no tags, covered seams and as the name implies, they look miraculously soft.

The website says seamless socks coming April 2010. We'll be waiting with bated breath. And held nose.

Wednesday, March 31, 2010

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.

Tuesday, March 30, 2010

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. 

Monday, March 29, 2010

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.

Sunday, March 28, 2010

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.

Thursday, March 25, 2010


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.

Wednesday, March 24, 2010

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.

Tuesday, March 23, 2010

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.

Monday, March 22, 2010

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.

Saturday, March 20, 2010

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.

Thursday, March 18, 2010

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.

Wednesday, March 17, 2010

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.