Thursday, April 26, 2012

Kindness is Power

Because it is the end of the school year, I am reflecting on how it has gone and thinking about what we need to work on at home this summer and what we need to start planning for next school year.

(Yes, really. While I am looking forward to swimming in the pool and playing outside as much as my boys already are, I am also thinking about how much time we need to be spending on "homework" for school and speech therapy, about what needs to be done before the end of this school year and the beginning of the next, and also whether or not to add outside occupational therapy in for both of the boys. Welcome to the life of a special needs parent).

One of the things that I have loved about this school year is a club that is offered at the boys' school. It's called "Kindness is Power" or "KIP" for short. I've mentioned it a couple of times on here, most recently on our trip to a local bounce place and also our trip to the local bowling alley.

It is a club designed to help kids like Sawyer and Xander. It offers social interaction and inclusion, two things both of them certainly need in the school setting. We are so thankful they have been able to participate, that the club is there and that is has had such a positive impact on their school year. Sawyer's resource teacher is actually one of the sponsors, which is just another one of the many reasons we love her.

Here is the letter we received at the beginning of the school year explaining what the club is and requesting permission to participate.


Acceptance. Inclusion. Integration. All good things.

Kindness is, indeed, power.

Tuesday, April 24, 2012

Before & After

There's a whole back story to how we ended up living in our current house (see here). And it's only taken about two years, but we're finally getting around to finishing up a few things on our renovation list. The majority of the inside was completed before we moved in (and, let's be honest, builder's hate to work on their own houses, so some little things may stay on that list forever).

The exterior has taken a bit longer, but is finally coming together. In the last few months, we've done quite a bit. The brick mailbox (pretty much standard in our neighborhood) has been installed. The chain link fence in the back yard has been replaced with a new shadowbox wood fence. The narrow driveway has been extended to allow people to both park in our driveway and also open their doors. And now, the landscaping has been completed.

The very original before ... including the faded green shutters and the random green mailbox ...


The just moved in with minor exterior upgrades (new shutters, new lighting) but original 1970s landscaping still in place ...


And the up-close new landscaping with river rock (because mulch requires too much effort on an annual basis) ...


And the nearly finished after (please ignore the river rock still sitting in the driveway in this photo, it is now in the backyard around some additional landscaping there) ...


Home sweet home. A little more so each and every day ...

Monday, April 23, 2012

A Little Bit Amazing

Seeing by here we wander
Seeing, a photo by here we wander on Flickr.
Every single day, I am so inspired by this kid.

Xander is so incredibly smart, and he overcomes some pretty major obstacles with speech and language and sensory issues to show us just how much he really does know. And I have a feeling we haven't seen anything yet. Not by a long shot.

First and foremost, I must tell you that many of us believe that Xander has a photographic memory. His ability to remember certain things, to recite certain things, seems to suggest it.

Today is just one of many examples. Every Monday his class gets their spelling list for the week, with five or six words that they will be tested on at the end of the week.

After a little struggle phrasing the question in a way he understood, we managed to quiz him on his words for this week. You know, the ones he just got today.

Those words were the following:

pick
let
next
jazz
when

Xander already knows a LOT of words. But these are not ones I would expect him to breeze through when he's reading. He might mumble through them, or attempt to sound them out, or he might simply look up and wait for someone to tell him the word.

When I prompted him this afternoon, he spelled every single one of them. Correctly. On the first try.

It was amazing to watch him. He would look down at his arm, tap out each letter as he was spelling, almost as though he could see the list in his mind. Which, of course, is what many of us believe he does.

So incredibly smart. And he works so incredibly hard, whether it's at school or speech therapy or even homework at home with us. Always trying, always working and always pushing forward.

Xander is absolutely amazing. And we could not be more proud of him.

Sunday, April 22, 2012

Who's Hungry?

Hungry Little Boys by here we wander
Hungry Little Boys, a photo by here we wander on Flickr.
All three of them think that they are, even though they just got up from dinner about 30 minutes before the bread came out of the oven.

Sawyer has been hovering around the bread ever since it came out. Xander keeps telling us that it's bread and trying to lift the rack up to carry it around. Connor is just curious because the other two are both curious.

It is, of course, another experiment in our gluten-free-casein-free diet. And it was a fail before we ever started because Mommy did not read the label carefully enough.

Yes, it is completely gluten free. It's part of the "Gluten Free Pantry" brand of box mixes. But, unlike the regular gluten free flour mix, this particular mix for sandwich bread has dry milk in the mix. I didn't notice it at the store, was simply thinking the milk was part of the added ingredients (for which you can substitute either water or alternative milks like soy or almond or coconut). Nope, dry milk in the mix. So gluten free it is, but casein free it is not.

The boys had mixed reactions. All of them wanted a slice of the fresh baked bread. Sawyer had already pinched several bites before I even sliced it. He, of course, tore into it like there was no tomorrow. Bread is his weakness, even gluten-free bread, apparently. Xander tasted and ate the crispy crust edges, but was not overly fond of the bread itself. Connor, who feels compelled to try all of his brothers' new foods even though he is not on the diet, was not a fan. He nibbled and poked holes into a rather expensive piece of bread that no one else then wanted.

We have a few days to work on this loaf, but next up will be the recipe for the dinner rolls, using the flour that is both gluten and casein free.

Hopefully those will work out better. I'm going to have to experiment with this new diet cooking. Most of the things have a really bland taste and an unusual smell. Neither of those are going over well with our boys. Perhaps some sugar or honey into the bread. Or maybe bananas, which the boys both like.

Like so many things ... trial and error. We'll keep trying until we figure out what works best for our boys.

Snapshot Sunday

Big Boy Smile by here we wander
Big Boy Smile, a photo by here we wander on Flickr.

Saturday, April 21, 2012

Night on the Town

Seeing Double by here we wander
Seeing Double, a photo by here we wander on Flickr.
Or something like that.

The twins are both part of a club at school called Kindness is Power (KIP). Our last outing was the much-loved (at least by Xander) bowling night. Last night it was at a bounce place. It was an even bigger hit with the boys.

Connor was disappointed not to join us, but as you can probably guess, he had baseball. Practice was at the exact same time as our event, so we took the our divide and conquer approach. Josh and Connor went to baseball, the twins and I went to bounce. At least everyone got to do something fun.

The rest of the photos from our bounce adventure are here.

Not Starving Yet

Well, they're not starving to death. Not yet. That's the good news. The not so good news is that the boys are not exactly happy with their new gluten-free-casein-free (GFCF) diet.

And who can blame them? No bread or pasta. No milk or butter or yogurt. Staples, those.

But we're slowly working our way into the diet. I would say we've eliminated about half of the original gluten and casein they used to eat in only a few weeks. That's a pretty big step. For Sawyer, it means a lot less bread and a lot less breaded chicken nuggets (especially fast food or restaurants). For Xander, it means a lot less milk and yogurt. Both were major food groups to the boys.

We've depleted our supply of Goldfish and Cheez-Its crackers, so those are gone. As are Doritos and Cheetos, though a few Funyuns still remain (a school lunch item for Xander). Our supply of Fruit Loops, Lucky Charms and Honey Comb cereals are gone, replaced by Berry Kix, Cinnamon Chex and Trix. Xander's GoGurt is nearly gone (one of his school lunch items, so we had a lot stocked up). We've already dropped from nearly 6 or 7 gallons of milk per week to about one. Our V-8 Fusion and apple juice consumption has doubled (if not tripled). And we've added more water (for Sawyer anyway).

We have limited success with the substitute foods. Soy milk, both natural and vanilla, was eventually poured down the drain. Several weeks of attempts were refused. Sawyer would turn to tap water and Xander just went thirsty. Almond milk, our newest trial, is faring a little better. Xander asked for three glasses last night. Sawyer will take small sips. Both are huge improvements over the soy, which included a tiny sip followed by severe gagging and wiping of the tongue. Rice spaghetti has been a big winner. Sawyer ate a little the first try, but devoured it on the second attempt. Xander was lukewarm to both, but he did eat a serving each time, he just didn't want any more. The substitute butter was okay on the gluten-free pancakes, but was less okay in Xander's lone vegetable, white corn. The pancakes themselves were okay in terms of taste, but the smell was a bit of a challenge.

The smell. It has been the challenge with most of the new foods. Our boys have sensory issues, some of them pretty significant. And when it comes to food, something they have always been notoriously picky about, those issues are even stronger. Taste, texture, small. All of those play a part in how willing they are to eat or even try something. The soy milk lost on two counts - it was too watery and also didn't smell like milk. The almond milk is thicker, similar in consistency to regular milk, and there is no discernible smell. The pancakes tasted perfectly fine with their substitute butter and (non-butter) syrup, but the smell was a little overpowering, both while they were cooking and also once they were on the plate. The rice pasta also smells different, but the organic spaghetti sauce masks the smell.

So, like I said, they're not starving. Sawyer has started enjoying more meats (he's always liked some). He'll eat shredded chicken, pork or roast beef. He'll also eat ham. Xander is by necessity eating more fruits, usually two different types at every meal instead of just one. The good news is he has more fruits that he's willing to eat.

It's a slow process. We're still learning our way around. I have more research to do, especially in terms of items that might have hidden gluten or casein that is not listed directly in the ingredient list. I also want to look into options for when we have to eat out, which is sometimes just necessary between school and work and therapies and baseball. And I also want to work on not breaking the bank every time I go grocery shopping, because so many of the substitute items are outrageously expensive.

Slowly but surely, like so many things in this life, we will get there.

Monday, April 16, 2012

Another Day, Another Game

Batter, Batter ... by here we wander
Batter, Batter ..., a photo by here we wander on Flickr.
Have I mentioned we are back to baseball?

This picture is from Saturday's game. The twins and I took Connor to practice yesterday (Sunday), and now we'll all be back at the ball field tonight for a Monday night game.

Yes, you read that correctly. One child. Three days in a row at the baseball field.

We also have practice again tomorrow. And Friday. And a game on Saturday.

And then the week begins again. We have five days at the field next week.

Welcome to little league baseball. Welcome to our world.

Wednesday, April 11, 2012

Back to Baseball ...

Two Down by here we wander
Two Down, a photo by here we wander on Flickr.
Actually, we've been back to baseball for a little over a month. Tryouts were early March, team placements and practice schedules followed a week later. We've spent a couple of nights a week at the baseball fields since mid-March.

Last night the season officially began. Connor had his first game of the season. At 7 p.m. on a school night. On perhaps the coldest evening in more than a month (there was a freeze warning out for the night, if that tells you anything).

Yesterday we took a divide and conquer approach to the boys. Josh was off from work, so he drove separately and met us at speech therapy after school.

After speech therapy, Josh took Connor to get a quick bite to eat and then head to the baseball field for pre-game practice and to get into his uniform (they just came in over the holiday weekend, and we missed a scrimmage on Saturday to travel for Easter). I took the twins for a rare sit-down dinner at Cracker Barrel to kill some time. Then we met up at the baseball field to watch the first game.

The twins were less than pleased to find themselves at a ball field. It was late. It was cold. And they were not in the mood. We stayed long enough to watch Connor play in the outfield and make it up in the batting rotation. And then I loaded them up and we headed home for bath and bed.

Connor's team did pretty well. They won 12 to 11. He played several different positions in the outfield and also a few innings as catcher. He had several hits and made it on base several times. He may or may not have upset his coach (and perhaps some teammates) when he correctly stayed on second base during a line drive to third, but then failed to advance when the ball was overthrown to first base (despite all the coaches and teammates yelling at him to run). He was busy watching the overthrown ball, and not busy watching his third base coach. A teachable moment, apparently.

All in all, it was a good game. Connor was excited about it all week long. It was the first thing on his mind every morning when he woke up, and all he could talk about to anyone who would listen. He came home talking about the win and how good his team is this year. He also likes to talk about how he knows a lot and is "pretty good" at everything this year.

And he has improved quite a bit. This new league has made a huge difference (see my rant opinion about his old league here). But there's still a long way to go. All-Star material he is not. At least not yet. And unless he starts enjoying this thing we call "practice" a little more, he may never be.

But he has fun. He's excited to play. He tries hard most of the time. And for a seven year old boy, that's what matters. Enjoying the game, and learning as you go.

So it's back to baseball ... four nights a week for the next few months.

Remind me about his fun and excitement being important in a few weeks. I have a feeling the twins and I might forget before the season is over.

The Fiesty One

Fierce by here we wander
Fierce, a photo by here we wander on Flickr.
Yesterday Xander was in rare form. He was opposed to absolutely everything that we did.

The good news is that his aide told me he had a good day and was cooperative for her. The bad news is that cooperation ended the minuted he climbed into my truck after school. And it was Tuesday, which meant we had a busy afternoon to get through.

First was speech therapy directly after school.

All the way there, he kept telling me "No speech! No Shanna!" His therapist, of course, is Ms. Shanna. "No speech! No Shanna!" It was forceful. And repeated.

Speech itself was probably the least productive session we have ever had. He was angry and uncooperative. He spent more than half of the session sprawled across the floor telling us "No!" to whatever we were trying to do.

"No cards!" for the flashcards we use to work on categories.

"No story!" for the book we were trying to read.

"No game!" for the board game, though he did eventually warm up to a game called "Ned's Head."

Let's just say there were a lot of "no" moments during speech.

After speech was not much better. He did cooperate long enough to eat dinner at Cracker Barrel. Pancakes were the only yes of the afternoon. We'll overlook the fact that pancakes have gluten, just this once. It was a hard enough day without trying to find a GFCF dinner at a restaurant on the south side of town.

Our next stop was the baseball field for Connor's first game of the season. We've had lots of practices the last month or so, but this was his first actual game. As soon as the fields were visible a little voice piped up from the back seat.

"No baseball." Again it was loud. And forceful. And repeated.

We stayed for just over an inning, long enough to watch Connor to make it up in the batting rotation.

On the way home, he decided he wasn't ready to go home. We were taking our normal exit off the highway when he offered his standard "No thanks!"

He also offered a random "Xander swim!" as an alternative. There was no context, as we weren't even close to one of our usual swimming pools, much less the indoor one that we frequent.

I explained it was time to go home, because we needed to take baths and get ready for bed.

Can you guess what I heard?

"No bath! No bed! No thanks!"

Yes, it definitely a day for no. And for clearly voicing his opinion on everything.

Have I mentioned he's the feisty one?

Tuesday, April 10, 2012

Easter Weekend

Easter Bunny by here we wander
Easter Bunny, a photo by here we wander on Flickr.
Photos from Saturday with Mommy's extended family begin here.

Photos from Sunday with Daddy's extended family begin here.

We now have more Easter candy than anyone should ever have in one house. Really.

Friday, April 6, 2012

Off Schedule

Off Schedule by here we wander
Off Schedule, a photo by here we wander on Flickr.
Sleep. It seems so incredibly easy for most of us. But it's so elusive to a few. Sawyer is one of them. He struggles with sleep. He doesn't need as much as the rest of the world, and it only takes one off day to set his schedule off for days or weeks at a time.

Time changes mess with him. So do changes in routine. Like this week, which is Spring Break. The schedule is off. So is he.

It was two o'clock in the afternoon. Sawyer was dead asleep in the middle of his floor. He's been up since three o'clock in the morning, completely awake and ready to start his day.

Round and round we go ...

Changes

Changes are hard for everyone. They are especially hard for two little boys with autism. Especially when it comes to something as important as food. We recently decided to start the boys on a gluten free casein free diet, and we are still in the very early stages.

Because it's such a big change, especially given the boys' already limited diet because of their own texture and taste issues, we are going slow. We're eliminating certain foods all together, and were limiting others until we can find substitutes the boys' will accept. Right now, half of the boy's meals are free of gluten and casein. We hope to have all of them that way by the end of the school year.

The subtitutes are still a work in progress.

Soy milk - both regular and vanilla flavored - have been thoroughly rejected. After more than two weeks of attempts. We started off small, just offering it as the first drink of the day with their usual breakfast of dry cereal. Both boys would apparently rather go thirsty than drink it. Even after two weeks of repeated offerings and no other alternatives. Sawyer, of course, is good at sneaking in cups of water from the sink when you're not watching. Xander would just rather wait for something better.

Gluten free cereals have fared better. Both boys generally like dry cereal to start their day, so the lack of regular milk only affects their morning drink. The boys have been enjoying Cinnamon Chex and Berry Kix. Xander is also partial to Fruity Pebbles. I think we might also be able to do Trix as well, but I'm still doing some research.

The good news is that they're not starving in the morning. The bad news is they might be kind of thirsty for a while. We're going to try either coconut or almond milk next.

We've phased out a few things completely. Regular milk and yogurt are no longer offered at home (though we are going to continue giving Xander the rest of the Gogurt we have on hand in his school lunch - partly because I cannot bring myself to waste it, and partly because I do not want to attempt a major change to his standard lunch this late in the school year - he takes the same thing every single day).

Apple juice, V8 Fusion and water are the boys drink offerings. They go through quite a bit of all of them (though Xander is still resistant to the water).

Sawyer is eating a lot more meat. Bacon. Chicken (grilled or boiled in water, but not with breading). Roast. Xander is still eating mostly fruits. Grapes. Bananas. Oranges. Pineapple. Both boys are having a LOT of applesauce.

We've tried a few other substitutes. Gluten free pancakes (made with soy milk) were okay, but not great. Xander ate one, but passed on a second. Sawyer ate two, but didn't like the texture of a third (which was exactly the same as the first two). Rice spaghetti went pretty well. Xander ate about half of his serving, which is pretty typical for him with spaghetti. Sawyer ate all of his and most of Xander's. Sweet potato french fries were a definite no. Natural popcorn with salt (but no butter) went over well. It went slower, but it still disappeared.

There are a few other substitutes yet to try. Gluten free bread and flour. Corn-based spaghetti. I'm sure there's a lot more. We're also still doing research, learning our way around label-reading and collecting recipes to try.

Like I said. Early stages. Some things are going well. Some things are still a work in progress. We're taking our time. We're trying to find things the boys actually like, things that taste good without the gluten and casein. But we're not forcing the boys to completely give up everything until we've found enough substitutes to work for them.

Because change is hard for everyone, but it is especially hard for them ... and they're life already has a lot of challenges. So we're trying to make this one as easy as possible, and not starve them to death in the process.