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 ...
Friday, April 6, 2012
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.
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.
Saturday, March 31, 2012
Friday, March 30, 2012
More Than Numbers
One of my favorite bloggers posted this today, along with a beautiful picture of her little girl.
So many in the autism community are doing the same.
Yesterday the CDC announced the new incidence rates for autism. The research is already four years old, but it is the most current available.
1 in every 88 children in the United States is diagnosed with some type of autism spectrum disorder.
1 in every 54 boys in the United States is diagnosed with some type of autism spectrum disorder.
The numbers continue to increase at a significant rate.
The numbers are important, but there is something else much more important. It's the people who have autism, the faces behind those numbers.
Here are two.
They are both part of the 1 in 54.
This is what autism looks like.
So many in the autism community are doing the same.
Yesterday the CDC announced the new incidence rates for autism. The research is already four years old, but it is the most current available.
1 in every 88 children in the United States is diagnosed with some type of autism spectrum disorder.
1 in every 54 boys in the United States is diagnosed with some type of autism spectrum disorder.
The numbers continue to increase at a significant rate.
The numbers are important, but there is something else much more important. It's the people who have autism, the faces behind those numbers.
Here are two.
They are both part of the 1 in 54.
This is what autism looks like.
Thursday, March 29, 2012
The Hunger Games
And no, it's probably not what you're thinking. Though I do very much love the books (and the first movie, for that matter). It's something entirely different. It looks more like this ...
The result may very well be the same. In the end, it may very well be the death of either the kids or of us. Because it's going to be an epic battle.
And I have to tell you, I honestly never thought this would be our house. I did not see myself spending an obscene amount of money in the organic section of my local grocery store. I am just not that person.
The very early parenting years in our house included three boys born less than 14 months apart. We were in survival mode. I didn't make my own baby food from fresh fruits and vegetables. I didn't buy organic. I bought the jars. Not only that, I bought mostly fruits, especially with the twins. At a certain point, you get tired of seeing liquid vegetables being sprayed across the room, the floor, your kids, and certainly yourself. It was one of those battles, after several months, that I finally gave up. Surely they will eat them sometime.
And the answer is no, no they do not. The twins have not willingly put vegetables in their mouths. Ever. They will tolerate a few things - as babies it was the rather unappealing combination of liquid sweet potatoes and corn, as toddlers it was regular canned green beans and white corn. As little boys, it's white corn only for Xander and nothing at all for Sawyer. French fries don't count as far as I'm concerned. The boys love them from fast food places, but will not touch the homemade french fries (you know, slices of fresh potato fried in canola oil).
When it comes to fruits, the boys do a little better. They have always done really well with the basics. Both will eat pineapple slices and mandarin oranges, and Xander will even eat bananas and red grapes (it used to be only green, but somewhere along the way he switched and now it is only red). Applesauce, though not apples themselves, is also a big favorite. See, much better on the fruit side. Perhaps the baby food did have a lasting impact on their preference. But it still doesn't make me want to go back in time and have more liquid vegetables flying across my house.
But I digress ... I am talking about fruits and vegetables, which is only part of the equation. And this battle, which I am sure you have guessed by now, is going to be mostly with the twins. It is their diet that is about to change.
Anyone in the autism community has heard about the gluten free casein free (GFCF) diet. It can even be controversial. Current research does not support any specific results, but many parents swear by it. We have known about it for a while. And we have even thought about and talked about trying it several different times. But we have never actually tried it.
There are several reasons we always put it off. The first is that the boys already have incredibly limited food sources. They both have serious texture issues, and for many years would not even taste anything that was not familiar to them. Sawyer will now taste just about anything. Xander will do so, but he is less willing and very rarely accepts anything new into his diet.
Beyond their texture issues, Sawyer is a gluten addict. I do not use the term lightly. He LOVES bread. He will beg, borrow or steal every last piece of bread in our house if you let him. Xander's weakness is casein. His obsession is not nearly as obvious as Sawyer's, but his favorite food choices all have it. Milk and yogurt are two of his largest food sources.
Do you begin to see why we have avoided the diet? Each boy will be losing a major source of their current diet.
There is no single reason we are starting on the GFCF diet now. As hard as it will be, and as valid as the reasons we put it off still are, it just seems like the right time. If there is even the smallest chance it might help the boys, we have to try. There are so many more articles and resources, and the food itself is so much more readily available not just at specialty food stores but even at the local grocery store chains.
Some people go cold turkey. We are not those people. I cannot bring myself to throw away perfectly good food in our pantry or refrigerator. Some people go whole household. We are also not those people. For a lot of reasons. Mostly expense. Our grocery bill is already large, will get bigger as we try the diet with the twins, and would be ridiculous if we all were on it. Just as an example. Regular milk is around $3 per gallon in our part of the world. Soy or coconut or almond milk, the acceptable substitutes, are about $4 per half gallon. In any given week, we go through about 7 gallons of milk in our house. That's a lot. And most of the other items have a similar price increase - more money, for about half the quantity.
Right now, we are in the elimination process. We are using up the things we have (particularly things that were for the twins), and simply not replacing items that contain gluten or casein. No yogurt. No goldfish (cheese has casein). No cereals made with flour. And the list goes on and on and on ...
We are also slowly adding in some of the new foods, or attempting to, at least. Soy milk is not a hit. We've been trying that one for about two weeks now, and the boys only get the smallest taste in their mouths before setting the cups back down. Apparently they would rather go thirsty than have that (and honestly it's not that bad, because we tried it, too). The texture is different though, and of course, that matters with Sawyer and Xander. Today I picked up some gluten free flour and pancake mix, as well as some gluten free pasta.
We are still in the very early stages. I am still doing research, still learning what foods are okay and what foods have hidden ingredients that contain gluten and casein. I am looking at the hundreds of recipe books out there, trying to figure out which one, if any, would work for our boys. It's going to be hard. It's going to be time consuming. And it's going to be expensive. But we're going to try.
The good news is that some of the boys' main food sources are actually good for them and are free of gluten and casein. Their favorite juice has always been V8 Fusion, which blends fruits and vegetables in every serving, and they will also drink plain apple juice. Sawyer will even drink water on a regular basis. Fruit is always good, and they have some at every single meal, so it will make up a big component of their diet. Applesauce, which we used to alternate with yogurt at meals, will become a large source of food. We will have to work a little harder with both of them on the vegetable side. Sweet potato french fries are already a no, in case you're wondering. Sawyer also likes meat, so he's not going to go hungry. Xander, on the other hand, does not. He very well may go hungry for a while.
Like I said, it's going to be a battle.
We have given ourselves a few months to make the transition. Summer break is going to be the best time for us to try the diet, when the boys are out of school and I have significantly more control over the boys access to food. I can only imagine how much more quickly Sawyer would steal bread off someone else's tray at school if he were not getting any at home (because he already tries to steal it now, even when he does get bread at home). He will probably try to steal it off of our plates at home if the gluten free bread doesn't go over well.
We may see some benefits, we may not. Not everyone agrees, and like so many things with autism, there are no one-size-fits-all answers. But this is one thing that we can do, that we can try, that might help. Wish us luck. And if you happen to know of any good GFCF resources or recipes, send them our way. Sawyer requests bread. Xander begs for a casein free yogurt.
As always, our journey continues ...
The result may very well be the same. In the end, it may very well be the death of either the kids or of us. Because it's going to be an epic battle.
And I have to tell you, I honestly never thought this would be our house. I did not see myself spending an obscene amount of money in the organic section of my local grocery store. I am just not that person.
The very early parenting years in our house included three boys born less than 14 months apart. We were in survival mode. I didn't make my own baby food from fresh fruits and vegetables. I didn't buy organic. I bought the jars. Not only that, I bought mostly fruits, especially with the twins. At a certain point, you get tired of seeing liquid vegetables being sprayed across the room, the floor, your kids, and certainly yourself. It was one of those battles, after several months, that I finally gave up. Surely they will eat them sometime.
And the answer is no, no they do not. The twins have not willingly put vegetables in their mouths. Ever. They will tolerate a few things - as babies it was the rather unappealing combination of liquid sweet potatoes and corn, as toddlers it was regular canned green beans and white corn. As little boys, it's white corn only for Xander and nothing at all for Sawyer. French fries don't count as far as I'm concerned. The boys love them from fast food places, but will not touch the homemade french fries (you know, slices of fresh potato fried in canola oil).
When it comes to fruits, the boys do a little better. They have always done really well with the basics. Both will eat pineapple slices and mandarin oranges, and Xander will even eat bananas and red grapes (it used to be only green, but somewhere along the way he switched and now it is only red). Applesauce, though not apples themselves, is also a big favorite. See, much better on the fruit side. Perhaps the baby food did have a lasting impact on their preference. But it still doesn't make me want to go back in time and have more liquid vegetables flying across my house.
But I digress ... I am talking about fruits and vegetables, which is only part of the equation. And this battle, which I am sure you have guessed by now, is going to be mostly with the twins. It is their diet that is about to change.
Anyone in the autism community has heard about the gluten free casein free (GFCF) diet. It can even be controversial. Current research does not support any specific results, but many parents swear by it. We have known about it for a while. And we have even thought about and talked about trying it several different times. But we have never actually tried it.
There are several reasons we always put it off. The first is that the boys already have incredibly limited food sources. They both have serious texture issues, and for many years would not even taste anything that was not familiar to them. Sawyer will now taste just about anything. Xander will do so, but he is less willing and very rarely accepts anything new into his diet.
Beyond their texture issues, Sawyer is a gluten addict. I do not use the term lightly. He LOVES bread. He will beg, borrow or steal every last piece of bread in our house if you let him. Xander's weakness is casein. His obsession is not nearly as obvious as Sawyer's, but his favorite food choices all have it. Milk and yogurt are two of his largest food sources.
Do you begin to see why we have avoided the diet? Each boy will be losing a major source of their current diet.
There is no single reason we are starting on the GFCF diet now. As hard as it will be, and as valid as the reasons we put it off still are, it just seems like the right time. If there is even the smallest chance it might help the boys, we have to try. There are so many more articles and resources, and the food itself is so much more readily available not just at specialty food stores but even at the local grocery store chains.
Some people go cold turkey. We are not those people. I cannot bring myself to throw away perfectly good food in our pantry or refrigerator. Some people go whole household. We are also not those people. For a lot of reasons. Mostly expense. Our grocery bill is already large, will get bigger as we try the diet with the twins, and would be ridiculous if we all were on it. Just as an example. Regular milk is around $3 per gallon in our part of the world. Soy or coconut or almond milk, the acceptable substitutes, are about $4 per half gallon. In any given week, we go through about 7 gallons of milk in our house. That's a lot. And most of the other items have a similar price increase - more money, for about half the quantity.
Right now, we are in the elimination process. We are using up the things we have (particularly things that were for the twins), and simply not replacing items that contain gluten or casein. No yogurt. No goldfish (cheese has casein). No cereals made with flour. And the list goes on and on and on ...
We are also slowly adding in some of the new foods, or attempting to, at least. Soy milk is not a hit. We've been trying that one for about two weeks now, and the boys only get the smallest taste in their mouths before setting the cups back down. Apparently they would rather go thirsty than have that (and honestly it's not that bad, because we tried it, too). The texture is different though, and of course, that matters with Sawyer and Xander. Today I picked up some gluten free flour and pancake mix, as well as some gluten free pasta.
We are still in the very early stages. I am still doing research, still learning what foods are okay and what foods have hidden ingredients that contain gluten and casein. I am looking at the hundreds of recipe books out there, trying to figure out which one, if any, would work for our boys. It's going to be hard. It's going to be time consuming. And it's going to be expensive. But we're going to try.
The good news is that some of the boys' main food sources are actually good for them and are free of gluten and casein. Their favorite juice has always been V8 Fusion, which blends fruits and vegetables in every serving, and they will also drink plain apple juice. Sawyer will even drink water on a regular basis. Fruit is always good, and they have some at every single meal, so it will make up a big component of their diet. Applesauce, which we used to alternate with yogurt at meals, will become a large source of food. We will have to work a little harder with both of them on the vegetable side. Sweet potato french fries are already a no, in case you're wondering. Sawyer also likes meat, so he's not going to go hungry. Xander, on the other hand, does not. He very well may go hungry for a while.
Like I said, it's going to be a battle.
We have given ourselves a few months to make the transition. Summer break is going to be the best time for us to try the diet, when the boys are out of school and I have significantly more control over the boys access to food. I can only imagine how much more quickly Sawyer would steal bread off someone else's tray at school if he were not getting any at home (because he already tries to steal it now, even when he does get bread at home). He will probably try to steal it off of our plates at home if the gluten free bread doesn't go over well.
We may see some benefits, we may not. Not everyone agrees, and like so many things with autism, there are no one-size-fits-all answers. But this is one thing that we can do, that we can try, that might help. Wish us luck. And if you happen to know of any good GFCF resources or recipes, send them our way. Sawyer requests bread. Xander begs for a casein free yogurt.
As always, our journey continues ...
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