Sunday, May 31, 2009

Disorder Du Jour

Recently, a comment was made about my “Picky Eater” blog post. It was short but sweet. It said “Your son sounds like a pain in the you-know-what”. Well….yes. But no. But yes. Sigh. If only it were that simple.

Chances are, you haven’t yet heard of something called Sensory Processing Disorder. Well, I hadn’t either, until last year. Here’s how it all went down. When my son was a toddler, he was very selective about his foods. Being a first time mom, I subscribed to many parenting magazines and had read several books on parenting. This finicky toddler behavior pointed toward normal, but still…my Mommy gut wasn’t so sure. I couldn’t put my finger on it, but something wasn’t quite right. I talked to the pediatrician about my son’s eating habits and was assured this was normal – in toddlers. Fast forward out of the toddler years. It wasn’t just the eating issue. He seemed overly (and I mean overly) sensitive to other things. Sunlight bothered him. Loud noises bothered him – fireworks and hockey games were torturous – for all involved. The start of a lawn mower would send him screaming into the house. Clothing tags irritated him. A seam on his sock that didn’t sit quite right could cause an all out meltdown. When we cooked certain foods, he was so bothered by the smell, he would actually cry and refuse to enter the kitchen area.

My husband and I were frustrated and confused. Autism was in the news constantly and our son was exhibiting some of the signs. I discussed my concerns about my son’s behavior with a family member, who in turn mentioned it to my brother, who was good friends with a pediatrician in my area, who asked me to call her. So I did. And I talked. And she listened. I expected her to tell me I was slightly ridiculous and send me on my way. Instead, she suggested I see a Developmental Pediatrician. So we did. And I talked. And she listened. And she told me to start by setting up an Occupational Therapy evaluation. This would be to track how he was doing in areas such as strength, motor skills, and sensory motor development. On the order I was to take to the OT (Occupational Therapist), she had written two things: “evaluate for Hypotonia and Sensory Processing Disorder”. The moment I returned home, I looked these terms up. Hypotonia is basically a disorder characterized by low muscle tone. It is relatively common and can affect development in several areas, the main ones being gross and fine motor skills ie: catching a ball or buttoning a shirt, to name a couple.

Sensory Processing Disorder. Um...okaaay. Clearly the made up disorder du jour. Apparently OT services are in high demand, as the soonest available appointment was several months away, which was fine because the paperwork they sent me took about that long to complete. Included in this mountain of paperwork was a twenty-something page questionnaire. Some of the questions went a little something like this: Is your child bothered by sunlight? Is your child bothered by loud noises? Is your child irritated by clothing tags and seams? Is your child a picky eater?

I was OUTRAGED. This reeked of SCAM. I had been a victim of espionage! When I looked SPD (Sensory Processing Disorder) up on the Internet, there were tons of official looking websites and parent stories. So what? Obviously fabricated. There was mention of some books on the topic, so I went out to my local library and checked a few out, if in fact they actually existed. One book in particular struck a chord with me. The Out-of-Sync child, by Carol Stock Kranowitz. I was skeptical when I cracked open that cover, but boy, by the time I finished, I was shocked. The book had been written about my son! This SPD stuff started to feel real. I contacted the author, who lives 20 minutes away from us, and introduced myself and told her that we were booked for an OT evaluation, which she confirmed as the appropriate next step to take. She was friendly and helpful and told me she would be happy to help out if I was stumped along the way. Thank goodness for the nice people you meet on this journey of motherhood!

The diagnosis of Sensory Processing Disorder was confirmed after several visits to the OT. In terms of the eating issue, my son was on the mild side. There are cases that are severe enough to warrant feeding therapy. There I was complaining that my son would only eat six things, when there were ten year olds that had never ventured beyond goldfish crackers and yogurt. EVER.

My son began a weekly therapy program which focused on his low muscle tone and the parts of his SPD that could be improved through therapy. The thing about SPD is that there is no “cure”. There is no medication that will treat the symptoms, but as kids grow and mature, it will improve. Why, then, is it even worth the time to go through all this evaluation and diagnosis business?

Well, in my experience, the diagnosis helped me to understand my son better. There was a reason for the quirky things he was doing. When he would fall off his chair for the hundredth time (he still does!), I am better able to understand that he is not fully aware of how his body relates to the space around him. When he says “I can’t help it”, I have to pause and realize that it may very well be true. Finding that delicate balance between understanding his disorder, and wondering if he is playing me has been quite the challenge. I’ve had to face the fact that my role as a parent in shaping this young person is huge. I don’t want to baby him because I need him to learn how to take care of himself when he is in a situation where I am not there to help him. And I am trying to back off a little bit on the food issue. If he has agreed to try a new food, but has to do so over the trash bin, looking like a Survivor contestant during a food challenge, I have to understand that it’s not as easy as popping a morsel in his mouth, chewing, swallowing and moving on.

While I don’t believe that SPD is the sole reason for the “atypical” way my son behaves, I do believe it is part of the equation. I try to appreciate his quirks – at least life is never boring on the homefront! And there may be times when he is a pain in the you-know-what, but he’s MY pain in the you-know-what and really, I can’t picture life any other way.

Oh and P.S. – another reason I suspect that SPD is very real is the fact that my insurance company paid for the OT 100 percent!

So, this is the part where I need to point out that I am in no way, shape, or form an expert on Sensory Processing Disorder. I’m just a mom sharing my story. Here are some of the sites where you can learn more about SPD from the pros, with a few articles and a video thrown in for good measure:

1) this site includes that lengthy checklist I was talking about.
3) Carol Stock Kranowitz’s site
4) The Official Foundation

What’s In a Name?

(Or: A Chicken Nugget by Any Other Name).

There was a period of time when my son had a list of only six dishes he would eat. It went a little something like this:

1) Pizza (cheese only, no chunks of anything in the sauce)
2) Cheeseburger (no crunchy bits, no garnish)
3) Hot dogs (boiled only, no grill marks, no bun, ends cut off because they look “yucky”).
4) Chicken nuggets
5) PB & J (1/3 pb, 2/3 strawberry jam, no fruit chunks, crust cut off).
6) Grilled Cheese (American cheese only, no visible butter, no crust).

He was four years old at the time. We thought this was acceptable. When we dined out (not often), it was usually a family friendly restaurant that had a kid’s menu. Since our son would eat several items on the kid’s menu, we told ourselves all was okay.

In case you are wondering, no – I am not a finicky eater. Neither is my husband. Quite the opposite. My husband is fascinated by those shows on Food TV where they travel around the world eating all manner of slimy live creatures and fruit that smells like poop. I am a slight step down from that, but still quite adventurous, with the exception of bugs, things that are still moving, and sea urchin. So as you can imagine, as parents, we were prone to giving each other “the look” before throwing our hands up in despair, wondering if there was a “switched at birth” possibility we needed to look into.

At restaurants that did not feature a menu for the little ones, our son usually ate bread. Or tortilla chips. Or we brought snacks for him, claiming he had food allergies (which later turned out to be true). Occasionally, we offered a Happy Meal reward if he sat nicely while we enjoyed our curry/sushi/kimchi. Don’t worry, we only had to deliver the promised reward once. Turns out, he is not only picky about what he will eat, but smell was an issue as well. More on that another day.

So one day, we’re at a Chinese restaurant and I decided my boy needed to eat something other than the crunchy noodles that are meant for the soup. I ordered an egg roll. Realizing he would not eat anything with the word “egg” in it, I told him it was a “Chinese Roller”. No, I couldn’t come up with anything better. Anyway, I acted like I didn’t really care whether or not he tried it. Against his nature, he took a hesitant bite. He declared it edible! Inwardly, I was doing a happy dance, but told myself to act cool. I asked if he would like to try the “Chinese Ketchup” (duck sauce). He dipped. He ate. He kept it down. He ate the entire egg roll. I told him the restaurant had Chinese chicken nuggets. He ate half of a dinner sized portion, WITH the sauce. We remained very calm and collected until after the boy went to bed that night. We then may or may not have exchanged numerous high fives, shrill girly giggles, and Lord of the Dance routines.

The following became our food glossary. This served us well from age four to six. I’d like to pass it on to you, should you choose to accept.

Sweet & sour chicken = chicken nuggets
Sweet & sour pork = chicken nuggets
Chicken sandwich = giant chicken nugget on a bun
Chicken tempura = chicken nuggets
Chicken parmigiana = chicken nugget pizza
Fish sticks = chicken nuggets
Calamari = like onion rings
Ham = special bacon
Popcorn shrimp = chicken nuggets

In hindsight, I suppose this may considered “sneaking” foods, but it seemed somehow different in my mind. Don’t judge! Little by little, we transitioned to the proper names, so it’s all okay now. The point is, we can eat almost anywhere together and find something for everyone. Our experience is still a work in progress and many days seem like a half step forward and a dozen back, but we’ll get there one bite at a time.

Eat it or Wear it

Childhood experts state that it may take at least a dozen attempts before your child will accept a new food. But what if you can’t get past that first try? Experts also say not to force a new food upon your child. SO, if your child refuses a food repeatedly and you can’t force them to eat it, what’s a parent to do? Well…I don’t really know, but I can share some other “expert” suggestions that didn’t work out for me.

1) Camouflage foods: i.e. – chocolate zucchini cupcakes or strawberry/banana/broccoli smoothie. This, in fact, can worsen the situation. In our case, the intruder (shredded carrots in a meatball) was detected immediately and all future offerings were given a thorough (and I mean thorough) inspection. The thing is – I want my child to know, and hopefully like what he is eating. I don’t want to have to sneak food. It’s just, you know… too sneaky.

2) Reward system: i.e. “bribery”. We actually had high hopes for this one. We thought we hit the jackpot when our son (then 6) agreed to eat a sliver of lettuce in exchange for three hockey trading cards. Unbeknownst to him, Grandma had just returned from a trip to Toronto with a flea market find of one thousand assorted hockey cards. I think he tried maybe seven or eight new foods and started to put together the beginnings of a decent card collection. We were pleased while it lasted, but he lost interest in the cards. I was close to putting together a “prize basket”, but you know, it just didn’t feel right. There had to be another way.

3) Eat it or Eat Nothing: This method involves making it clear to your child that the food on the table is the only meal being offered. For us, this resulted in the eating of nothing, followed by a long stretch of crying (from hunger, we were told). I read in a parenting magazine that if a child is hungry enough, they will eventually give in. SO we presented the meal again. This was followed by the eating of nothing, followed by a long stretch of crying (from hunger). And so on. You get the picture…

4) Eat it or Wear it: This was actually my husband’s idea. He claimed this to be the method his own father used back in the day. Obviously a “Dad” thing. I would never suggest this, nor would I agree to it. Who exactly would be the one to clean up the mess? Daddy?? Noooo. And that is why you will never hear a mom threaten “eat it or wear it”. In any case, one phone call to Grandpa confirmed the dramatic “eat it or wear it” story of my husband’s childhood to be an untruth. Or at least grossly exaggerated.

Not to be overly negative, there is one trick that does work for me. For reasons I cannot explain, my son willingly eats almost every single sample offered at Costco on any given day. Just today he ate BBQ chicken, spinach and mozzarella ravioli, and a chicken potsticker with soy sauce. So you probably wonder why I don’t just buy the foods he samples and serve them at home. You would think it would be that simple, but if you look in my freezer, you will see a 50 pound bag of uneaten spinach and mozzarella ravioli. I was thinking about donning a shower cap and apron and serving the foods in bite sized pieces placed on little paper doilies. Instead, I asked my son “WHY?!”. His answer – “It’s free”. I can’t even begin to explain the reasoning. I assure you we do not ask him to contribute to the weekly grocery tab. But hey, it works and that’s fine with us.

Life With a Picky Eater

Being the Mom of a picky eater often causes me to feel like a parental failure. There have been times that I have stared with open envy at someone else’s child as they wolfed down some exotic food I could not even PAY my son to try. Believe me, I have made many unsuccessful bribery attempts. My son could have retired by now.

It’s exhausting. Nearly every meal is a battle and rarely do I feel victorious. It’s also embarrassing! There – I said it. I feel judged by other parents (and wait staff) when my son orders his meal “When Harry Met Sally” style.

On a positive note, there are two things that make me feel better about the situation:
1) With each passing year (my son is 8), there is some improvement. His repertoire of foods continues to grow, albeit slowly. While other parents are celebrating a homerun, we are high-fiving a bite of green pepper.
2) I know I am not alone in this seemingly never-ending struggle. I know this because there are countless books and articles on the subject and I know they are not being written for just for me. Also – I have seen the cute sectioned plates out there and again – I know I am not the only one buying them.

As with anything else in life, there are good days and bad days. On a good day, my son might voluntarily (without coercion or promise of reward) eat a full portion of calamari. What?! Why?! On a bad day – breakfast, lunch, and dinner might consist of all carbs, all the time. Plus a multi-vitamin!

That being said, there are a few things I have learned through these mealtime challenges. I am not the “picky eater whisperer” I was certain I could be. Apparently my son is immune to the gold standard methods that claim to transfer any finicky child into one that begs for “more broccoli please” within one week or your money back. When all other advice failed, I decided to just RELAX. Interestingly, I have found that the more I ease off, the more my son’s palate expands. This too shall pass and hopefully one day we will look back on this time and laugh. Or at least embarrass him with the tales.

Coming up next time: Eat it or Wear it and other mealtime fun!