Monday, April 28, 2014

Testing the Waters

For nearly two years, our twins have been following a gluten-free-casein free diet. It was a hard transition, particularly for two little boys who have always had issues with food textures and trying new things. But with so many people talking about the benefits they saw in their children with autism, we thought it was worth the try.

We started in the summer of 2012. We slowly let our supply of sugary cereals and food color dyed chips dwindle and disappear. We swapped Cinnamon Chex for Fruit Loops and Lucky Charms and Snyder's Gluten-Free Pretzels for Doritos and Cheetos. We started Gluten-Free Bisquick for pancakes, gluten-free bread crumbs for chicken nuggets or fried pork chops. We switched to dairy-free butter and yogurt and milk and ice cream. We gave up all but the most basic pasta, a gluten-free spaghetti that only Sawyer would eat. We gave up frozen pizzas for a gluten-free frozen crust we had to add just sauce and pepperoni and that only Sawyer would eat. Our grocery bill practically doubled, shopping at Whole Foods and in the organic sections of our local grocery stores.

We gave up every good restaurant you can imagine, and suddenly found ourselves hating even the thought of Chick-fil-a, Wendy's and Red Robin just because those were our only options for a whole family outing (though any gluten-free devotee will love all of them).

Twenty-two months. And we decided that was enough. We slowly started adding some foods back in. We started over Spring Break. And we didn't tell anyone on their school or therapy teams. We were hoping to get honest and unbiased feedback on their behavior, attention and overall demeanor once we started allowing gluten and casein back into their diets.

And ... nothing.

Every time I asked someone how the boys were doing, if they seemed a little off after the chaos of Spring Break or if they were having trouble getting back into routine and getting work done, I was told they were doing well. They were working hard, having some of their best days in reading and attending to work sessions. Eye contact was still amazing. And more than that, people were commenting on how happy they were, how many smiles and giggles they were seeing.

Our boys have always been happy. But I think they lost some of that when they went to the gluten-free-casein-free diet. And who can blame them. The food, for the most part, is bland and tasteless. There's no joy in pancakes with no taste. There's no smile for a piece of bread that's hard and tasteless. There's no happy in yogurt that smells like something rotten.

So here, we are, nearly a month after the slow re-introduction. I've seen some differences. Sawyer, in particular, displays a little more stim behavior. The hands wave a little more, and that vocal stim is even more pronounced, particularly during meal times.

But I don't know whether it's from a reaction to the food ingredients, or just an overall joy of enjoying food again. And the truth is, right now, I just don't care. They're eight years old. They're kids who want to eat what their peers and the rest of their family are eating. Their teachers and therapists, unbeknownst to them, gave us the go ahead by not reporting any adverse behaviors or issues at school or therapy. Their smiles, so much brighter and more often, say it all.

Our decision is in no way meant to influence anyone else. I still believe the diet can have benefits for some kids (or adults). I applaud parents who keep at it regardless of how hard it is to find recipes that are tasty and ingredients that don't break your grocery budget. But for our family, we're going to move away from the strict diet and find a compromise. I'm going to keep some of the things the boys like (the gluten-free pretzels, waffles and cookies). I'm going to give up the things they didn't (the almond milk, the almond milk yogurt and ice cream, the really expensive and frozen gluten-free bread). I'm going to let them have things with gluten that they've missed, like bread and chips, and things they like with milk like real yogurt and ice cream.

Within reason.

You see, for our boys, impulse control is a big issue. Sawyer would absolutely sit down and eat an entire loaf of bread or a whole box of Goldfish if you'd let him. I'll never forget him locking himself in the pantry the summer we started the diet, stuffing as many Cheez-its into his mouth as he could before we could stop him. Xander would eat an entire bag of Doritos every single day if you'd let him. He's done it a couple of times already, just because it made me so happy to see him excited to eat food again. Watching him eat a slice of real Sir Pizza, and say "Mmm ... yummy!" after every bite, was pretty great, too.

So we're going for a good mix of gluten and non-gluten foods. And we're going for acceptable portions. You can have two pieces of bread with a meal. You cannot have eight pieces of bread and not eat anything else.

So that's where we are right now. Like so many things, we're still figuring it out as we go. All I know is that I'd much rather have two happy little boys who may or may not stim a little bit more, rather than watch them pick at food that's expensive and doesn't taste good, and watch sadly as the rest of the world around them eats things they once were able to have but had to give up. We have more important battles to fight than Sawyer waving his arms a little more often, or Xander asking for Doritos every single day.

Easter Weekend

As usual, holiday weekends involve a lot of travel to see several different sides of the family. Our adventures began on Saturday, when we left bright and early to make the three hour drive to the western part of the state. The boys were all sleepy, of course. On the plus side, it was a beautiful Spring morning, made even more beautiful by all the big flowering trees that line our old neighborhood streets. It looked like it was raining through the sunlight, even though it was just white petals blowing in the wind (and unfortunately my cell phone camera did not do it full justice) ...

So our first Easter celebration began. Easter lunch included fish, which is apparently an old family tradition. Connor sampled and enjoyed it, but as I'm not a seafood fan, I went for the ham instead. Sawyer was with me on that, he tried to eat the whole platter of ham before we cut him off. Xander was his usual picky self and didn't eat much of anything. After visiting with family, the boys got to go outside for an Easter egg hunt on the farm.

We made it home late Saturday night and tried to get some rest for our adventures on Sunday. We slept in. Okay, I slept in, after the boys saw what the Easter Bunny had delivered and went on an egg hunt around the house for even more candy that none of us really need.

Next, we made our way to Grammy and Pappy's house for our second Easter celebration. A big lunch with more ham, another hit with Sawyer, followed by a really, really big Easter egg hunt (as in over 300 eggs). There are more grandkids at this one, so lots of little baskets to fill.

There was also some kite flying, or attempted kite flying, as the wind wasn't exactly cooperative. Xander, however, was determined and did indeed fly a kite for a good hour, after which he was wheezing (combination of allergies and asthma) and exhausted.

We wrapped up our second day early, as Daddy had to go back to work at the fire station (he had taken several hours off during his shift to attend). A busy weekend, but a good one, too ...

Friday, April 18, 2014

Back to Soccer

The Spring soccer season has started.

Xander is more impressed than Sawyer. Both boys moved up to the next team, slightly older kids with more capabilities. Instead of doing drills for the entire hour of practice, they now drill for the first half and scrimmage for the second half.

Xander LOVES the scrimmage part. He may or may not have pushed kids out of the way, screamed loudly in their faces, or otherwise scared them away from him and ball so that he could score. Ten goals. Yes, really. Ten goals. Did I mention that he LOVED it?

So our Sunday afternoons are now back to soccer for a few months. Soccer first, then french fries, of course.

Thursday, April 17, 2014

Spring Break

It was a busy but fun week for the boys.

Connor, our have suitcase will travel kid, left on Saturday and headed to the lake with Grandma and Grandpa for the week. He was in for a surprise adventure. As a kid, I'd always loved going to Land Between the Lakes and watching the big boats go through the locks on the river. Grandma and Grandpa made plans to take Connor there for a few days. They hadn't planned on the lock being under major construction and inaccessible to the public. Clearly it's been a while since I was a kid, and we were there. They still had a good time. Connor got to swim at the indoor pool at the hotel. He got to see big boats on the river. He even got to throw rocks into the river.

The twins and I stayed home early in the week to continue their regular speech and occupational therapies. We also made some spontaneous plans to visit the zoo. We've never taken the twins there, and Grammy and Pappy volunteered to help.

The animals were not a big hit. Xander was pretty clear with his "No animals!" commentary. We also avoided the indoor exhibits, because quite frankly we picked the worst possible day to take the twins. It was a beautiful day, both sunny and warm, in our part of the world. And like our boys, most of the state was on Spring Break. We got backed up on the interstate just trying to get there. It took 45 minutes to go maybe three miles. And then there was parking, and the lines, and the sheer amount of people there.

Despite that, the boys did remarkably well. We made our way around the entire zoo. We saw most of the major animal exhibits. The boys enjoyed the water exhibits the most, especially the seals and the ducks. 

We ended our day with a ride on the train, which was the highlight of Xander's day. He LOVED stopping to watch the train any time we saw it during the day.

At the end of the week, the boys and I traveled to join Connor at Grandma and Grandpa's cabin at the lake. We even took a day trip to explore parts of the lake that I've never seen before from land (the big dam and one of the state parks on the other side of the lake). 

We got to toss rocks into the river below the dam.

We even got to see two of the big marinas from an overlook. 

The boys and Grandma were all ready to end the day before me and Grandpa, but we eventually made it back to the cabin!

And now we're back into our normal routine of school and therapy and after school activities.

The rest of the zoo photos are here. Connor's trip photos are here. The rest of our lake photos are here.