To those who think they 'know' what my life is like becuase they've 'met' a person with autism... to those who think they know because they know me, and have met my children... especially to those who've yet to have children of their own...
There is a point when a child is only 5 weeks old, when the new has become painful. When you're woken by a cry for the thrid time that night, and it's only midnight. When you feel like you will never be allowed to sleep again. When you think bright yellow cottage cheeze-looking poop is the worst thing you have ever smelled in your life and you don't think you'll ever get away from it. There is that point. Take heart in the fact that this, all of this, will pass. Eventually it will end. Feel blessed.
Now, when you are sitting there at 2am, trying to think of this, think of me. Think of my friends who have children with disabilities. Think of all the smart mouthed know it all crap you said to us. Then realize, truely realize that this point will pass for you, but it will never pass for us. For us it is forever. It does not end. As our kids grow older one issue is simply swapped out for another. The sleepless nights don't go away. We know that newborn baby poop is not the worst smelling thing in the world. We don't hold tinly little bundles who can't stop crying and we don't know why. We hold fully grown bundles who can't stop crying and can't explain why.
In that moment, picture in your mind a tricycle with a cute squeeky little horn. Picture yourself sitting on that tricycle tooting that horn. Then look up. I was the armored semi truck in front of you. I was the one who your were sqeezing your little horn at while insiting the road was yours. Now realize exactly how close you came to getting squished, and be thankfull.
Be very, very thankfull.
Saturday, January 28, 2012
Wednesday, January 25, 2012
Chasing issues into new opportunities
Since we moved to Chino Valley last Fall, it seems like we've been chasing one emergency after another. We knew it wasn't going to be easy, living here on the farm, but I honestly didn't expect to run into some of the issues we did.
The plumming problems, that generated great debates on Facebook, were sort of expected. I knew that the septic tank was going to have to be emptied soon, but replacing both toilets at the same time was added, and unwanted, bonus I didn't expect. It wouldn't have been a major issue if not for another, very big issue that we had just started dealing with at the time.
My husband had no problem finding a job when we moved up here. Life was good for about the first 3 months. Then work started slacking off and the paychecks got smaller and smaller and smaller. Then, in Early December, they just stopped. There was no work to be done, and he wasn't getting any hours. Now my husband is in the agnozing limbo of being technically employed but not having a job. His line of work... heating, ventilation, and air conditioning (HVAC)... is very 'feast or famine', b ut I've never seen a famine period like this. Ever. He's doing it for 11 years and he's never gone 6 weeks without work. The longest period before was 3 weeks, and that was considered bad.
So, we have only my income to live on, which currently isn't much. I was barely paying our insurance permiums, forget food and other bills. We agreed when we got married that my primary occupation was Mom, and any money I made would be suplimental. There was a period, several years ago, where I had to break out my college education and be the primary breadwinner while my husband expanded is own, but again, that was expected. And something we had agreed on. This time it was a surprise.
So, I've been exapnding my portfolio and picking up new writing gigs. It takes time to generate an increase in income when you're a writer. You have to build networks and fan bases for your new gigs. You have to really get involved with your new publisher and learn their moods and demands. Then there's sharpening your skills in your new beat or topic...
I've been writing about food for years. I love cooking, food gardening, etc; plus I home-ec as an after school class to kids in the neighborhood when we lived in Phoenix. The topic was a good fit. Then.
Now, I find myself a bit tired of writing about food and cooking. So, when I was looking for new writing opportunities I decided to take advantage of a standing publisher and ask for a whole new topic. One I've always found exciting, but didn't have the opportunity to give it much attention: promoting what to do in Prescott and the Prescott area, my home town. Now I live here again, and the world is wide open to me. Examiner.com seemed to agree, becasue they gave me a new topic: Prescott Places and Faces Examiner. (click the link and check it out!)
I've only been at it a few days, so I'm still broke, but, I feel like a kid in a candy store. I'm excited about writing periodicals again. I can always write books (my first love), but books take years to come to fruition. Someday I'll be able to live off the money I make from them, but that day is not today. Today periodicals pay the bills. So, periodicals it is.
My goal now? To make enough money to pay mygrandmother back for the new toilets. Back to work with me!
The plumming problems, that generated great debates on Facebook, were sort of expected. I knew that the septic tank was going to have to be emptied soon, but replacing both toilets at the same time was added, and unwanted, bonus I didn't expect. It wouldn't have been a major issue if not for another, very big issue that we had just started dealing with at the time.
My husband had no problem finding a job when we moved up here. Life was good for about the first 3 months. Then work started slacking off and the paychecks got smaller and smaller and smaller. Then, in Early December, they just stopped. There was no work to be done, and he wasn't getting any hours. Now my husband is in the agnozing limbo of being technically employed but not having a job. His line of work... heating, ventilation, and air conditioning (HVAC)... is very 'feast or famine', b ut I've never seen a famine period like this. Ever. He's doing it for 11 years and he's never gone 6 weeks without work. The longest period before was 3 weeks, and that was considered bad.
So, we have only my income to live on, which currently isn't much. I was barely paying our insurance permiums, forget food and other bills. We agreed when we got married that my primary occupation was Mom, and any money I made would be suplimental. There was a period, several years ago, where I had to break out my college education and be the primary breadwinner while my husband expanded is own, but again, that was expected. And something we had agreed on. This time it was a surprise.
So, I've been exapnding my portfolio and picking up new writing gigs. It takes time to generate an increase in income when you're a writer. You have to build networks and fan bases for your new gigs. You have to really get involved with your new publisher and learn their moods and demands. Then there's sharpening your skills in your new beat or topic...
I've been writing about food for years. I love cooking, food gardening, etc; plus I home-ec as an after school class to kids in the neighborhood when we lived in Phoenix. The topic was a good fit. Then.
Now, I find myself a bit tired of writing about food and cooking. So, when I was looking for new writing opportunities I decided to take advantage of a standing publisher and ask for a whole new topic. One I've always found exciting, but didn't have the opportunity to give it much attention: promoting what to do in Prescott and the Prescott area, my home town. Now I live here again, and the world is wide open to me. Examiner.com seemed to agree, becasue they gave me a new topic: Prescott Places and Faces Examiner. (click the link and check it out!)
I've only been at it a few days, so I'm still broke, but, I feel like a kid in a candy store. I'm excited about writing periodicals again. I can always write books (my first love), but books take years to come to fruition. Someday I'll be able to live off the money I make from them, but that day is not today. Today periodicals pay the bills. So, periodicals it is.
My goal now? To make enough money to pay mygrandmother back for the new toilets. Back to work with me!
Sunday, October 2, 2011
The Incident at Ruma Port
"Is this going to be another Incident at Ruma Port sort of thing? If so, you have to tell me. Better to kill her now than go through that again."
This was a line uttered by our hero, Shael, in the midst of the big battle in the book Steadfast. He was, of course, referring to the 14-year-old queen of the planet Tyria, Daneri, whom he had sworn to protect. He had come to Tyria to be her regent until she came of age, a task assigned to him by none other than Ayllan, the queen of the gods. So, what would make a one thousand year old immortal ask such a question in such an instance? What could make him so instantly willing to chuck it all and go against orders that came from so far on high? After all, even if we didn't know he had a heart of gold, any immortal or god who goes against the will of Ayllan is either destroyed or imprisoned for all eternity. When you're immortal that later one could really suck.
Those of you who read Steadfast got a sense of what could be. More over, you bothered to ask the question "what did happen at Ruma Port?"
Well, guess what? That question is going to be answered soon! As the Hippylady and I work to finish the drafting of the Welcome to Azdia trilogy (WTA), Renee and I are officially sketching the Oracle trilogy (OT).
The first book of the OT is "Incident at Ruma Port". Yes, an entire book detailing exactly what happened in that tiny little town on the Azdin Coast. The spot where the port once stood is now a crater that rivals the size of Lake Nacadis to the north. But where the crater Nacadis' rising created eventually filled with rain waters and began to support all manner of aquatic life, the Ruma Port crater remains empty, lifeless. Nothing will go near it, not even the waters. Gods fear to tread there for the place is unholy, even by the standards of Evil.
This is, in fact, the beginning of the Lord Evil's descent into madness. The mere fact that someone, or something, could commit an act that made all of his worst deeds seem pale and amateurish disturbed him greatly.
The fact that the act was committed by a teenage girl drove him over the edge completely.
So, pay attention to your inboxes First Readers and Denizens of Azdin City. Pages will be coming your way before Thanksgiving!
This was a line uttered by our hero, Shael, in the midst of the big battle in the book Steadfast. He was, of course, referring to the 14-year-old queen of the planet Tyria, Daneri, whom he had sworn to protect. He had come to Tyria to be her regent until she came of age, a task assigned to him by none other than Ayllan, the queen of the gods. So, what would make a one thousand year old immortal ask such a question in such an instance? What could make him so instantly willing to chuck it all and go against orders that came from so far on high? After all, even if we didn't know he had a heart of gold, any immortal or god who goes against the will of Ayllan is either destroyed or imprisoned for all eternity. When you're immortal that later one could really suck.
Those of you who read Steadfast got a sense of what could be. More over, you bothered to ask the question "what did happen at Ruma Port?"
Well, guess what? That question is going to be answered soon! As the Hippylady and I work to finish the drafting of the Welcome to Azdia trilogy (WTA), Renee and I are officially sketching the Oracle trilogy (OT).
The first book of the OT is "Incident at Ruma Port". Yes, an entire book detailing exactly what happened in that tiny little town on the Azdin Coast. The spot where the port once stood is now a crater that rivals the size of Lake Nacadis to the north. But where the crater Nacadis' rising created eventually filled with rain waters and began to support all manner of aquatic life, the Ruma Port crater remains empty, lifeless. Nothing will go near it, not even the waters. Gods fear to tread there for the place is unholy, even by the standards of Evil.
This is, in fact, the beginning of the Lord Evil's descent into madness. The mere fact that someone, or something, could commit an act that made all of his worst deeds seem pale and amateurish disturbed him greatly.
The fact that the act was committed by a teenage girl drove him over the edge completely.
So, pay attention to your inboxes First Readers and Denizens of Azdin City. Pages will be coming your way before Thanksgiving!
Monday, May 30, 2011
Getting BItchy
For the last several years I've had people asking me to write a book, or a column, or something on my moral beliefs and views on decision making. Until recently, however, I hadn't found my voice for it. It has to be natural. It has to be real. It has to flow out of me like water through a colander.
Well, I found it. I found my voice. It's off topic for the Azdian Visitor's Center though, so I started a new blog. It's called the American Moral Middle. I will tell you now that, while I will try to keep it clean, some posts may not be suitable for children under 50.
As for everything else in my life... I got to go to party! It was the first time in 17 years that I've gone to a party, with or without kids, and was able to relax and just enjoy myself. Such can be life with autistic kids (or aspie spouses) however. Whenever there wasn't some ASD related problem I was too sick to enjoy myself. It's hard to enjoy yourself when your tired and nauseous from radiation treatments. It's also hard to be happy at all when you make the stupid decision of going to a karaoke bar with friends when your bone density is way down. When the slightest move make you toss your cookies or break a bone.
So, party. It was a nice little pool party, and yes, we brought the kids. They were great. I am so proud of them. The biggest problem we had was when the 8yo started crying because she couldn't find us. It was a really big house. But she found the host, and he dried her tears then sent her in our direction.
My diabetic 11yo did have a little too much sugar, but nothing major. I kind of expected that. She didn't even need an insulin shot though. Just a big spoonful of peanut butter.
People are always asking me if it ever gets any easier with autistic kids. Yes, yes it does. I don't expect things to go as smoothly next time, but hey, you never know.
Well, I found it. I found my voice. It's off topic for the Azdian Visitor's Center though, so I started a new blog. It's called the American Moral Middle. I will tell you now that, while I will try to keep it clean, some posts may not be suitable for children under 50.
As for everything else in my life... I got to go to party! It was the first time in 17 years that I've gone to a party, with or without kids, and was able to relax and just enjoy myself. Such can be life with autistic kids (or aspie spouses) however. Whenever there wasn't some ASD related problem I was too sick to enjoy myself. It's hard to enjoy yourself when your tired and nauseous from radiation treatments. It's also hard to be happy at all when you make the stupid decision of going to a karaoke bar with friends when your bone density is way down. When the slightest move make you toss your cookies or break a bone.
So, party. It was a nice little pool party, and yes, we brought the kids. They were great. I am so proud of them. The biggest problem we had was when the 8yo started crying because she couldn't find us. It was a really big house. But she found the host, and he dried her tears then sent her in our direction.
My diabetic 11yo did have a little too much sugar, but nothing major. I kind of expected that. She didn't even need an insulin shot though. Just a big spoonful of peanut butter.
People are always asking me if it ever gets any easier with autistic kids. Yes, yes it does. I don't expect things to go as smoothly next time, but hey, you never know.
Sunday, May 15, 2011
The million dollar family.
In a piece she recently published on Y!CN, my friend, Nancy, posed the question 'Do you know any millionaires?'. The piece poses other questions as well. Like, 'would you pay $900 for a parking spot', and 'what would you do with a million dollars'?
Unfortunately, a million dollars doesn't go very far these days. For my family it's barely the financial reset button. Truth be told, it isn't even that. My husband and I are old fashioned enough to believe that parents should pay for things like college, weddings, and down payments on their kids' first homes. We should help them buy their first car, teach them how to drive it, and take care of it. With the economy the way it is, however, all we can afford to do is teach them to drive. Everything else they will have to do on their own, and that kills us.
We also believe that children should take care of their parents when they get older. When grandparents get to the point of not being able to do everything for themselves anymore Mom and Dad (the middle generation) should step in so that Grandma and Grandpa can still enjoy life without having to go without. If Grandpa can't lift, Dad should do the lifting. If Grandma can't stand at the stove long enough to cook, Mom should do the cooking. If they can't drive, Mom and Dad should do the driving. Back when Grandma and Grandpa where merely Mom and Dad they took care of us, day in and day out. We believe that they have the right to expect us to return the favor.
So, what does a million dollars buy? For my family, which has 6 kids, two parents, four grandparents, and one great-grandparent, it barely buys anything. It buys small controlled trusts for the kids to help them go to college, buy a modest but reliable vehicle, and maybe, maybe a down payment on a house. What's left over buys the land on which to build a multi-generational home, with maybe enough left over to actually build the home, if no frills are included in it's construction. There Mom and Dad can take care of Grandma and Grandpa without having to worry that the family elders would end up homeless or having to stretch financially just to survive.
We would still have debt. We would still have bills to pay. My husband and I would still have to work. The kids would still have to worry about their futures and how they were going to pay for things like weddings, mortgages, etc. But we would all at least having a fighting chance. There would be no $900 parking spaces. There would be no fancy restaurants, or shopping sprees. There would just be room to breathe for a week, maybe two, before the cost of living started to mount again.
Unfortunately, a million dollars doesn't go very far these days. For my family it's barely the financial reset button. Truth be told, it isn't even that. My husband and I are old fashioned enough to believe that parents should pay for things like college, weddings, and down payments on their kids' first homes. We should help them buy their first car, teach them how to drive it, and take care of it. With the economy the way it is, however, all we can afford to do is teach them to drive. Everything else they will have to do on their own, and that kills us.
We also believe that children should take care of their parents when they get older. When grandparents get to the point of not being able to do everything for themselves anymore Mom and Dad (the middle generation) should step in so that Grandma and Grandpa can still enjoy life without having to go without. If Grandpa can't lift, Dad should do the lifting. If Grandma can't stand at the stove long enough to cook, Mom should do the cooking. If they can't drive, Mom and Dad should do the driving. Back when Grandma and Grandpa where merely Mom and Dad they took care of us, day in and day out. We believe that they have the right to expect us to return the favor.
So, what does a million dollars buy? For my family, which has 6 kids, two parents, four grandparents, and one great-grandparent, it barely buys anything. It buys small controlled trusts for the kids to help them go to college, buy a modest but reliable vehicle, and maybe, maybe a down payment on a house. What's left over buys the land on which to build a multi-generational home, with maybe enough left over to actually build the home, if no frills are included in it's construction. There Mom and Dad can take care of Grandma and Grandpa without having to worry that the family elders would end up homeless or having to stretch financially just to survive.
We would still have debt. We would still have bills to pay. My husband and I would still have to work. The kids would still have to worry about their futures and how they were going to pay for things like weddings, mortgages, etc. But we would all at least having a fighting chance. There would be no $900 parking spaces. There would be no fancy restaurants, or shopping sprees. There would just be room to breathe for a week, maybe two, before the cost of living started to mount again.
Tuesday, May 10, 2011
The Dirty Laundry of Autism
Today we're talking about laundry. No, really, laundry, as in the stuff you put in a washing machine to get clean.
It seems silly to the rest of the world that laundry would be such an issue for moms and dads of kids with autism, but it's can be no laughing matter. I've been around the ASD community for going on 15 years, and it's one of the things I've heard from just about everyone you can imagine.
Getting the laundry done takes on a whole different meaning when you have a child with higher needs, especially when that child has a way of doubling or even tripling the work load by destroying the progress you've made on the laundry loads by dumping clean clothes on the floor and walking on them, hiding stacks of clean clothes in the dirty laundry hamper under your husband's dirty work uniforms, or even opening up a drawer of clean clothes and peeing in it. Yes, these things really happen, and no we can't just explain it to them and get them to stop.
Not only do you end up with more laundry to do when you have a kid with autism, you end up with less time and/or energy to do it. All of the things they do to generate more laundry doesn't actually stop with the abuse of clothes. They're doing these things in other parts of the house and life too. We have to keep up on all these things. While you're doing a load of whites in the laundry room or garage they're in the kitchen pouring out all of the ketchup, mustard, oatmeal, and bran flakes on the kitchen floor. And that's only if you're lucky. They could be taking these things to the living room carpet or painting the drapes and wallpaper with them. Sounds tiring, doesn't it?
Now add in the way others judge you for not getting the laundry done, or the stains taken out of the carpet. People without kids, or people with normal kids, find it easy to criticize. Even when they don't say anything at all we still see the looks and the hear the tsks. They would never put up with that, nosirree! Well, kudos to you! May you and your perfect child live happily ever after in Never Never Land.
Don't get me wrong, I don't hate these people. I just think they're clueless. No, I know they're clueless. And really that's a good thing. If they had a clue that would mean they had a child with high needs. I'm glad my clueless friends don't know what it's like to reach into their daughter's sock drawer and come back with a wet hand. Or walk into the living room first thing in the morning to find the walls painted with poo, and that your oldest child's t-shirts have been turned into hand rags. OR that while you were changing the laundry over and fielding a phone call to yet another specialist that the child in question was busy stuffing the pile of clean laundry you were about to fold under the bathroom sink for no reason in particular... at least, not that you can figure out.
So, you get as much done as you can. Laundry is just one of the many, many chores that never get caught up on when you have a child with autism. On very rare and great occasion it does happen. And then all of your friends, those who have a clue and half of the ones who don't, are jealous. Learn to laugh. If one of your friends announces that he or she has caught up on their laundry buy them a drink. They deserve it.
XXOX
It seems silly to the rest of the world that laundry would be such an issue for moms and dads of kids with autism, but it's can be no laughing matter. I've been around the ASD community for going on 15 years, and it's one of the things I've heard from just about everyone you can imagine.
Getting the laundry done takes on a whole different meaning when you have a child with higher needs, especially when that child has a way of doubling or even tripling the work load by destroying the progress you've made on the laundry loads by dumping clean clothes on the floor and walking on them, hiding stacks of clean clothes in the dirty laundry hamper under your husband's dirty work uniforms, or even opening up a drawer of clean clothes and peeing in it. Yes, these things really happen, and no we can't just explain it to them and get them to stop.
Not only do you end up with more laundry to do when you have a kid with autism, you end up with less time and/or energy to do it. All of the things they do to generate more laundry doesn't actually stop with the abuse of clothes. They're doing these things in other parts of the house and life too. We have to keep up on all these things. While you're doing a load of whites in the laundry room or garage they're in the kitchen pouring out all of the ketchup, mustard, oatmeal, and bran flakes on the kitchen floor. And that's only if you're lucky. They could be taking these things to the living room carpet or painting the drapes and wallpaper with them. Sounds tiring, doesn't it?
Now add in the way others judge you for not getting the laundry done, or the stains taken out of the carpet. People without kids, or people with normal kids, find it easy to criticize. Even when they don't say anything at all we still see the looks and the hear the tsks. They would never put up with that, nosirree! Well, kudos to you! May you and your perfect child live happily ever after in Never Never Land.
Don't get me wrong, I don't hate these people. I just think they're clueless. No, I know they're clueless. And really that's a good thing. If they had a clue that would mean they had a child with high needs. I'm glad my clueless friends don't know what it's like to reach into their daughter's sock drawer and come back with a wet hand. Or walk into the living room first thing in the morning to find the walls painted with poo, and that your oldest child's t-shirts have been turned into hand rags. OR that while you were changing the laundry over and fielding a phone call to yet another specialist that the child in question was busy stuffing the pile of clean laundry you were about to fold under the bathroom sink for no reason in particular... at least, not that you can figure out.
So, you get as much done as you can. Laundry is just one of the many, many chores that never get caught up on when you have a child with autism. On very rare and great occasion it does happen. And then all of your friends, those who have a clue and half of the ones who don't, are jealous. Learn to laugh. If one of your friends announces that he or she has caught up on their laundry buy them a drink. They deserve it.
XXOX
Sunday, May 8, 2011
The Mother's Day That Sorta Isn't
I don't really like cake. I don't like parties in my honor. They make me feel weird. I tell you this to help you understand why my family has decided to postpone Mother's Day this year. I don't do Mother's Day when it's all about me. I don't even do my own birthday, and it has nothing to do with the fact that I'm getting older. I'm quite comfortable with my age. I'm about to turn 39 in few days, and the idea of pushing 40 doesn't bother me.
What bothers me is doing a bunch of work to put on a party when I'm the guest of honor. I don't need much. I don't like cake. I don't eat a huge breakfast, so a fancy brunch in my honor is kinda pointless. All the work that goes into putting on things like Mother's Day and my birthday isn't for me. It's for those around me.. which sorta defeats the point. And for those of you who think someone else should be doing the work, hehe, you don't have autistic kids. Aside from an 8yo in a wheelchair there is no one else in my house to do the work.
So, we're postponing Mother's Day until the 21st, at which point we will also celebrate Cinco de Mayo, my birthday, and Memorial Day. We're calling it the May Daze weekend. Why are we doing this? Because that's when we'll be able to afford to bring my mother down from the old hometown via shuttle. I'll have someone else to concentrate on as a guest of honor. I love spoiling my mom, so it works great for me.
As for today, the day when everyone else is celebrating Mother's Day, I plan to work. I have some articles due to a few different ezines, and I plan to get some of those finished. I'll also sit vigil on the APOV groups in case another autism mom (or dad) has a bad day and needs a friend... which happens pretty much every year. Autism and Mother's Day don't seem to mix well for many people. Our chatrooms and satellite groups tend to fill up fast on holidays.
So, to the rest of you who will be observing this particular holiday on it's appointed day, Happy Mother's Day. I hope it turns out great for you! I've heard the urban legend that this does occasionally happen from time to time, lol.
XXOOX
What bothers me is doing a bunch of work to put on a party when I'm the guest of honor. I don't need much. I don't like cake. I don't eat a huge breakfast, so a fancy brunch in my honor is kinda pointless. All the work that goes into putting on things like Mother's Day and my birthday isn't for me. It's for those around me.. which sorta defeats the point. And for those of you who think someone else should be doing the work, hehe, you don't have autistic kids. Aside from an 8yo in a wheelchair there is no one else in my house to do the work.
So, we're postponing Mother's Day until the 21st, at which point we will also celebrate Cinco de Mayo, my birthday, and Memorial Day. We're calling it the May Daze weekend. Why are we doing this? Because that's when we'll be able to afford to bring my mother down from the old hometown via shuttle. I'll have someone else to concentrate on as a guest of honor. I love spoiling my mom, so it works great for me.
As for today, the day when everyone else is celebrating Mother's Day, I plan to work. I have some articles due to a few different ezines, and I plan to get some of those finished. I'll also sit vigil on the APOV groups in case another autism mom (or dad) has a bad day and needs a friend... which happens pretty much every year. Autism and Mother's Day don't seem to mix well for many people. Our chatrooms and satellite groups tend to fill up fast on holidays.
So, to the rest of you who will be observing this particular holiday on it's appointed day, Happy Mother's Day. I hope it turns out great for you! I've heard the urban legend that this does occasionally happen from time to time, lol.
XXOOX
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