(I swear that's the title, and pen name, the crazy girl chose for herself. Below is a submission from our burgeoning authoress.)
Once in a fa away place called Magicland, Princess Lila woke up feeling depressed. She did not know why. The fairy tree sparkled as little fairys skipped and flew out of the fairy tree. Janice the rainbow was playing with her friend an recitin a poem about a basket of kittens. Also strawberry the pink butterfly was giving out chocolate-covered strawberries to people.
Lila did not know why she was so depressed. Then she saw a flash of darkness outside.
"Ugh, it's my older brother Theadore." Lila thought. "He's always causing trouble. He's such a pain."
Then she said "I wonder what he is up to this time." The last time he caused trouble, he "accidentally" let a evil pegases out in the world. So she decided she must do something.
When she packed a flashlight, a compass, and a wistle, she went to French Fry Forest. She saw a mouse with a coat. She cried because the poor little mouse only had the coat. She was crying so much just because that was the only thing she had. So Lila gave the mouse more stuff, and then finally she went to Gardian Gumdrop Graves's house. He was upset because his dessert wasen't sweet enough. So Lila put sugar on his dessert.
Then she went to her brother's secret hideout and found out that Theadore was trying to make his hideout darker, and a flash of the dark got in Magicland. Lila threw away the dark ad went home.
The End
(Blessings from our family to yours.
--Andie)
Sunday, March 20, 2016
Friday, March 4, 2016
Life in General
I tend to only write when something is actually going on. Maybe I am hoping it will make it easier for me to talk, kind of an outline so that I keep going.
The thing is, life is always noisy and crazy and chaotic here; if I only write when we get the headliners, I am going to miss out on all the little stuff that makes up our lives. It is not like I am going to forget that Emerald had diabetes, but I might forget how she asked if everyone has a disability "like autism or vegetarianism". I want to remember the latter, I want to remember the little things.
So Saturday, Gabriel was up all night (one a.m. on, at the very least) and we were pretty tired. Not the most tired we have ever been, but not feeling well rested either. All day long, he was quiet, just wanting to watch his iPad and lay around. Sort of unusual, but not excessively if you consider that he had been up all night.
He pops a fever, 103. Man's got the flu. And it is proving to be a hard one to kick; he missed school all week.
His ARD is actually coming up on Tuesday. I am going to ask for a communication device--they can get reimbursed by medicaid, but in the state of Texas it is a little complicated. Specifically, the money comes out of the special education budget to pay for the iPad; they apply for insurance reimbursement, which when received goes into general education funding. I don't know why that is how it is set up, but it is.
They might try and say no. Schools favor sign and picture exchange, the low tech of it all. If they hedge, I am going to press for a timeline for pecs--he has been in the program for four years now; assistive technology is the next step. You point out that carrying around a binder full of pictures for the rest of his life is not practical, and you ask the stinger question:
How will this help my child become independent?
Because that is the goal of IEP's--to help the child become independent, and prepare him for further education and employment. Even now, preparing for his first grade year, I have to be asking questions addressing whether or not we want Gabriel to go to college, have a job eventually.
It seems like heavy stuff, but if you think about it: when your child is little, you have so many dreams for them. Prom and homecoming, friends, being a cheerleader and honor roll student, getting their license, first apartment. Job, babies, spouses. You have this image of who your child will become.
When your baby is diagnosed as autistic though, that image is taken away from you. In its place is this giant question mark, because you don't know what to expect, what this is going to look like five years from now, ten, thirty.
The school actually helps you project into the future. They want you thinking: what would you like to see happen? Which direction would you want this to go, given the choice? They make you think about it again.
And not all your projections are going to come true, obviously. But you weren't expecting your daughter to move in with her boyfriend, work as a tattoo artist, and name your first grandbaby Xanthippe either. Children are going to become who they become; the mission statement you prepare for your child on the spectrum is for your benefit--to remind you that there is a future and there is hope.
Besides the AT, I am also going to see if they will write in that Gabriel will not get held back or penalized for absences. I know he can only benefit from the program the days that he is there. I know that it is in his best interest to be at school as many days as possible.
I am also very aware of the fact that he has a battalion of doctors and specialists and therapists and not all of them share the same city as we do. There is going to be travel, often overnight. He is on a fistful of drugs that sometimes mess him up--give him intestinal troubles or cause him to be excessively drowsy or awake for too many days on end, aggressive, nauseous, dizzy. And he is a seven year old boy. He is going to get sick. A lot. Some of his classmates are medically fragile; I am not going to risk their health and well being sending him to school ill.
My goal is that he stay at school as much as possible; I do not want him flagged (or me hassled) over missed days.
And hopefully fresh, hot donuts first ARD of the morning will help soften them to my case ;)
Emerald is up next I suppose.
That girl is all over the place. Last week, I got a call from the principal that she was in the office for punching a kid in the chest for "being in her way".
She lives in a world where everything is extremes. Which I can actually relate to. Doesn't matter how great a day has been; one thing goes wrong, and I am cross as a button. I use superlative language, like "always" and "never". That is the best thing I have ever heard; that is the worst thing I have ever tasted. Stuff like that. I am working on it; it is much harder to suppress in an 8-year-old.
Our mantra right now is:
"That is not a helpful thought, and I choose not to believe it."
Michael and I talked with her after an outburst. We told her that the brain's job is to think every thought in the universe--every thought that can be thought, good or bad or weird or crazy. It is her job to tell her brain, "That is not a helpful thought, and I choose not to believe it." She is supposed to ask herself if an action or a thought is helpful, kind, and good before she acts or speaks. If it is not, she keeps it in.
Of course this is much harder in practice than in theory. It is hard to change habits. She is an impulsive girl that lives her life in this dramatic, colorful, BIG sort of way and we don't want to destroy that part of her. The world needs people like her; that's why God made her. We are just trying to instill the selflessness and kindness and virtue so that when she does act instinctually and impulsively, what comes out does not hurt others.
Other than that, we are working on music theory and researching signing her up for Girl Scouts. We think she would benefit from the values they teach.
Benjamin!
Ben is a sad hot mess. He wants so very much to be bigger, at school with his siblings. He's lonely, and it shows. As soon as the others get home from school, he is all over them, trying to get someone to talk to him, play with him. Emerald wants to go to her room and read by herself; we had to explain how she needs to (for a little while every day, at least) put her brother's needs before her own. We would make sure that she got what she needed; but she should be there for her brother too.
At church he is such a sweet and cheerful little thing; he goes in early to Bible Class to help the teacher set up the chairs, and there have been no complaints about his behavior. Last Sunday, he very loudly demanded, "was I baptized as a baby?!" in the middle of service. Heaven only knows where he picked that up.
In play, he is imaginative and likes to invent the wildest stories; he doesn't much mind what they play, as long as someone is playing with him and he is not the bad guy. He will ask me a hundred questions a day, all the same variety and all ending the same: "Who would win in a fight, Superman or Spider-Man? ...Darth Vader, because he is Luke Skywalker's father."
Darth Vader wins every fight.
Michael is still loving working at ACU so much. He has made some good friends, and it is a positive atmosphere where he is challenged and engaged. Best of scenarios.
As for me...
I am doing work with REACH, which is a local autism resource. This year we are planning and putting on the Walk for Autism because AutismSpeaks pulled out of our region. It has taken a lot of effort, but it really looks like it going to be awesome, and stands to benefit a lot of people.
I was hoping that we could find another place to live for next year, somewhere a little cheaper, little more permanent. Unfortunately that does not appear to have been in the cards. I am trying to be patient, but...I would like my forever home. I want color on the walls and flowers everywhere, I want to make memories in a place that will belong to me. Time to give the kids a chance to really feel like this place is their home before they move off and away.
God provides for our needs though, and I will not complain. We are set up pretty well here.
That is all I have for today. Maybe tomorrow will be more interesting. I am making strawberry preserves with Mom. I'll let you know how they turn out.
--Andie Wearden
The thing is, life is always noisy and crazy and chaotic here; if I only write when we get the headliners, I am going to miss out on all the little stuff that makes up our lives. It is not like I am going to forget that Emerald had diabetes, but I might forget how she asked if everyone has a disability "like autism or vegetarianism". I want to remember the latter, I want to remember the little things.
So Saturday, Gabriel was up all night (one a.m. on, at the very least) and we were pretty tired. Not the most tired we have ever been, but not feeling well rested either. All day long, he was quiet, just wanting to watch his iPad and lay around. Sort of unusual, but not excessively if you consider that he had been up all night.
He pops a fever, 103. Man's got the flu. And it is proving to be a hard one to kick; he missed school all week.
His ARD is actually coming up on Tuesday. I am going to ask for a communication device--they can get reimbursed by medicaid, but in the state of Texas it is a little complicated. Specifically, the money comes out of the special education budget to pay for the iPad; they apply for insurance reimbursement, which when received goes into general education funding. I don't know why that is how it is set up, but it is.
They might try and say no. Schools favor sign and picture exchange, the low tech of it all. If they hedge, I am going to press for a timeline for pecs--he has been in the program for four years now; assistive technology is the next step. You point out that carrying around a binder full of pictures for the rest of his life is not practical, and you ask the stinger question:
How will this help my child become independent?
Because that is the goal of IEP's--to help the child become independent, and prepare him for further education and employment. Even now, preparing for his first grade year, I have to be asking questions addressing whether or not we want Gabriel to go to college, have a job eventually.
It seems like heavy stuff, but if you think about it: when your child is little, you have so many dreams for them. Prom and homecoming, friends, being a cheerleader and honor roll student, getting their license, first apartment. Job, babies, spouses. You have this image of who your child will become.
When your baby is diagnosed as autistic though, that image is taken away from you. In its place is this giant question mark, because you don't know what to expect, what this is going to look like five years from now, ten, thirty.
The school actually helps you project into the future. They want you thinking: what would you like to see happen? Which direction would you want this to go, given the choice? They make you think about it again.
And not all your projections are going to come true, obviously. But you weren't expecting your daughter to move in with her boyfriend, work as a tattoo artist, and name your first grandbaby Xanthippe either. Children are going to become who they become; the mission statement you prepare for your child on the spectrum is for your benefit--to remind you that there is a future and there is hope.
Besides the AT, I am also going to see if they will write in that Gabriel will not get held back or penalized for absences. I know he can only benefit from the program the days that he is there. I know that it is in his best interest to be at school as many days as possible.
I am also very aware of the fact that he has a battalion of doctors and specialists and therapists and not all of them share the same city as we do. There is going to be travel, often overnight. He is on a fistful of drugs that sometimes mess him up--give him intestinal troubles or cause him to be excessively drowsy or awake for too many days on end, aggressive, nauseous, dizzy. And he is a seven year old boy. He is going to get sick. A lot. Some of his classmates are medically fragile; I am not going to risk their health and well being sending him to school ill.
My goal is that he stay at school as much as possible; I do not want him flagged (or me hassled) over missed days.
And hopefully fresh, hot donuts first ARD of the morning will help soften them to my case ;)
Emerald is up next I suppose.
That girl is all over the place. Last week, I got a call from the principal that she was in the office for punching a kid in the chest for "being in her way".
She lives in a world where everything is extremes. Which I can actually relate to. Doesn't matter how great a day has been; one thing goes wrong, and I am cross as a button. I use superlative language, like "always" and "never". That is the best thing I have ever heard; that is the worst thing I have ever tasted. Stuff like that. I am working on it; it is much harder to suppress in an 8-year-old.
Our mantra right now is:
"That is not a helpful thought, and I choose not to believe it."
Michael and I talked with her after an outburst. We told her that the brain's job is to think every thought in the universe--every thought that can be thought, good or bad or weird or crazy. It is her job to tell her brain, "That is not a helpful thought, and I choose not to believe it." She is supposed to ask herself if an action or a thought is helpful, kind, and good before she acts or speaks. If it is not, she keeps it in.
Of course this is much harder in practice than in theory. It is hard to change habits. She is an impulsive girl that lives her life in this dramatic, colorful, BIG sort of way and we don't want to destroy that part of her. The world needs people like her; that's why God made her. We are just trying to instill the selflessness and kindness and virtue so that when she does act instinctually and impulsively, what comes out does not hurt others.
Other than that, we are working on music theory and researching signing her up for Girl Scouts. We think she would benefit from the values they teach.
Benjamin!
Ben is a sad hot mess. He wants so very much to be bigger, at school with his siblings. He's lonely, and it shows. As soon as the others get home from school, he is all over them, trying to get someone to talk to him, play with him. Emerald wants to go to her room and read by herself; we had to explain how she needs to (for a little while every day, at least) put her brother's needs before her own. We would make sure that she got what she needed; but she should be there for her brother too.
At church he is such a sweet and cheerful little thing; he goes in early to Bible Class to help the teacher set up the chairs, and there have been no complaints about his behavior. Last Sunday, he very loudly demanded, "was I baptized as a baby?!" in the middle of service. Heaven only knows where he picked that up.
In play, he is imaginative and likes to invent the wildest stories; he doesn't much mind what they play, as long as someone is playing with him and he is not the bad guy. He will ask me a hundred questions a day, all the same variety and all ending the same: "Who would win in a fight, Superman or Spider-Man? ...Darth Vader, because he is Luke Skywalker's father."
Darth Vader wins every fight.
Michael is still loving working at ACU so much. He has made some good friends, and it is a positive atmosphere where he is challenged and engaged. Best of scenarios.
As for me...
I am doing work with REACH, which is a local autism resource. This year we are planning and putting on the Walk for Autism because AutismSpeaks pulled out of our region. It has taken a lot of effort, but it really looks like it going to be awesome, and stands to benefit a lot of people.
I was hoping that we could find another place to live for next year, somewhere a little cheaper, little more permanent. Unfortunately that does not appear to have been in the cards. I am trying to be patient, but...I would like my forever home. I want color on the walls and flowers everywhere, I want to make memories in a place that will belong to me. Time to give the kids a chance to really feel like this place is their home before they move off and away.
God provides for our needs though, and I will not complain. We are set up pretty well here.
That is all I have for today. Maybe tomorrow will be more interesting. I am making strawberry preserves with Mom. I'll let you know how they turn out.
--Andie Wearden
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