Autism is now a 1 in 50 disorder! Run for the hills!
I mean, now it's two percent of the whole population. What's going to happen when it becomes three or four percent of the population? Will society collapse? Or will we just have too many engineers? Ay yi yi!
A friend noted they always come out with these alarming statistics right before those stupid "light it up blue" months. You know. Because Autism Speaks working for a "cure" is really working right now and they need more money, right?
Yeah.
So anyway. Two percent of the population. Maybe they are coming for you next. I've comprised a handy checklist of autism symptoms which will hopefully ease your mind that you do not have this fatal disease.
1. Do you like Pokemon? I mean a lot. Like obsess about it.
2. Or Star Wars? Or Star Trek? Or Minecraft?
3. Doctor Who. If you're too into this and can identify all the doctors, it's all over for you.
4. Are you an introvert?
5. Do you spend a lot of time online?
6. Do you have trouble in certain social situations?
7. Do you think this whole thing is blown out of proportion?
8. Would a diagnosis make any difference?
I'm thinking the whole "epidemic" could be solved in the DSM 6 just by eliminating the possibility of an autism diagnosis. Just take autism out of the manual and problem solved. In fact, I think every "disorder" out there could be completely cured through the magical medical process of re-diagnosis.
Ok, really? It's a "spectrum disorder." That means all different kinds of people are diagnosed and almost none of them are like that Rainman guy.
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
21 March 2013
08 August 2012
Disability Discrimination: Another Denied a Transplant
--A guest post by KWombles.
Another disabled person denied a transplant because of his disability. Another petition in hopes of changing the hospital's decision (go sign it, please).
After the last time, with Mia Rivera (click on her name to read the good news that her mother will get to give Mia a kidney), the disability community came out in full force to support the Rivera family, and it's happening again, thankfully, with blogger after blogger writing about Paul Corby's story.
Will this outpouring of outrage make the same kind of difference this time? We can hope. But one thing's certain, if we don't, as a community, come out strongly and forcefully for families going through this kind of discrimination, it will never end, never stop, and it will be someone we know and love.
Yes, resources are often deemed "scarce" and the costs of transplantation are high, but people have intrinsic value, and autism and other related disorders SHOULD NEVER BE the determining factor as to whether a person gets on the transplant list.
For other bloggers covering this, please see the feeds on the autism blogs directory.
Another disabled person denied a transplant because of his disability. Another petition in hopes of changing the hospital's decision (go sign it, please).
After the last time, with Mia Rivera (click on her name to read the good news that her mother will get to give Mia a kidney), the disability community came out in full force to support the Rivera family, and it's happening again, thankfully, with blogger after blogger writing about Paul Corby's story.
Will this outpouring of outrage make the same kind of difference this time? We can hope. But one thing's certain, if we don't, as a community, come out strongly and forcefully for families going through this kind of discrimination, it will never end, never stop, and it will be someone we know and love.
Yes, resources are often deemed "scarce" and the costs of transplantation are high, but people have intrinsic value, and autism and other related disorders SHOULD NEVER BE the determining factor as to whether a person gets on the transplant list.
For other bloggers covering this, please see the feeds on the autism blogs directory.
14 July 2012
Committing Suicide Because of Son's Autism
It can be difficult to deal with autism. Or. Rather. It can be difficult to deal with autism when you don't have enough help.
A blogger recently was horrified when she saw that "want to commit suicide because of my son's autism" were the search words that led to her blog. So she wrote a post in the hopes that the original searcher will find it and others are writing responses of their own.
I think searches are extremely cursory. But yeah, they do say something about the person making them. Someone searching those terms might just be feeling sad and want to see if others feel as desperate and awful as they do sometimes but have no set plan in place. I mean, it doesn't count unless you go through with it. I might also google "want to become Olympic swimmer" but believe me, I have no plans to actually do so. I might just want to learn about swimming, extreme swimming culture, or whatever. I don't even own a swimsuit.
I think all this horror is... odd. Who would NOT think about killing themselves if they had children who desperately NEED services but realistically speaking will never get them. I tell you, you do not know what you are talking about if you think this is not a normal feeling.
Have you any idea how funding actually works? Losing a parent bumps your kid up on the magical "how disabled/entitled to funding am I" checklist. There are limited funds. You are competing with others for those funds. A rational parent, one who really loves her children more than life itself, would have to at least seriously consider it, especially if things are going badly just then. Remember, normal parent-guilt gets amplified a whole boodle when you have an autistic child or four. If you don't have support? If you don't have balance? Things can get dangerous, fast.
It's sick, really. But that's how the system works. I mean, with food stamps at least, one could ask, "Is your income below x level? Do you have fewer than (number) dollars?" and *zing* you have benefits.
With disabilities, here's how it works:
Are you disabled? Yes? OK. We have 200 slots for this special waiver that will give your family some help. 200 slots should do for the millions of people in the WHOLE STATE, right? So all y'all people who have some disability-related trouble need to put on a really good song and dance for our committee. Tell us why you are more worthy than everyone else in the entire state who is applying.
Oh! Did I mention? Only a few slots are open at any one given time. Someone has to die or age out of the system to free the slot you want. Also, you have to prove that your child would likely be institutionalized without this help. But we're only giving help to a few people so guys? Bare your souls, send us detailed forms about your income (and does your kid have a burial plan? We need to know. Go find the policy number.), go to monthly meetings that last for hours, fill out more paperwork... and then just hope no one else more disabled than your kid appears before the committee. Someone else more disabled than your kid? Would ruin it for you. You start hoping the other families never hear about funding. You're not going to share information with anyone.
It's like a sick game show where the prize is the help to which every family with a truly disabled child should be entitled in the first place. I know for a fact that many families that are pushed to the extremes that, well, I'm not even going to outline.
Thankfully, one of my children is one of the lucky 200 children now using this Sara Lopez waiver. I'm very, very grateful, but I think the process shouldn't have taken years.
I don't think this blog searcher, if he/she is desperate for help, is the only one out there hoping for real compassion and some tangible support. I'll tell you something. It probably isn't one person's mental health problem that led to any such search. Let's not think that. My honest reaction isn't an uncaring one, I hope, but I'm genuinely not surprised to read that people are googling all kinds of stuff when they're looking for a way out of a bad spot.
Suicide is not the right way. But are we willing to actually fund the right way? I'm asking.
A blogger recently was horrified when she saw that "want to commit suicide because of my son's autism" were the search words that led to her blog. So she wrote a post in the hopes that the original searcher will find it and others are writing responses of their own.
I think searches are extremely cursory. But yeah, they do say something about the person making them. Someone searching those terms might just be feeling sad and want to see if others feel as desperate and awful as they do sometimes but have no set plan in place. I mean, it doesn't count unless you go through with it. I might also google "want to become Olympic swimmer" but believe me, I have no plans to actually do so. I might just want to learn about swimming, extreme swimming culture, or whatever. I don't even own a swimsuit.
I think all this horror is... odd. Who would NOT think about killing themselves if they had children who desperately NEED services but realistically speaking will never get them. I tell you, you do not know what you are talking about if you think this is not a normal feeling.
Have you any idea how funding actually works? Losing a parent bumps your kid up on the magical "how disabled/entitled to funding am I" checklist. There are limited funds. You are competing with others for those funds. A rational parent, one who really loves her children more than life itself, would have to at least seriously consider it, especially if things are going badly just then. Remember, normal parent-guilt gets amplified a whole boodle when you have an autistic child or four. If you don't have support? If you don't have balance? Things can get dangerous, fast.
It's sick, really. But that's how the system works. I mean, with food stamps at least, one could ask, "Is your income below x level? Do you have fewer than (number) dollars?" and *zing* you have benefits.
With disabilities, here's how it works:
Are you disabled? Yes? OK. We have 200 slots for this special waiver that will give your family some help. 200 slots should do for the millions of people in the WHOLE STATE, right? So all y'all people who have some disability-related trouble need to put on a really good song and dance for our committee. Tell us why you are more worthy than everyone else in the entire state who is applying.
Oh! Did I mention? Only a few slots are open at any one given time. Someone has to die or age out of the system to free the slot you want. Also, you have to prove that your child would likely be institutionalized without this help. But we're only giving help to a few people so guys? Bare your souls, send us detailed forms about your income (and does your kid have a burial plan? We need to know. Go find the policy number.), go to monthly meetings that last for hours, fill out more paperwork... and then just hope no one else more disabled than your kid appears before the committee. Someone else more disabled than your kid? Would ruin it for you. You start hoping the other families never hear about funding. You're not going to share information with anyone.
It's like a sick game show where the prize is the help to which every family with a truly disabled child should be entitled in the first place. I know for a fact that many families that are pushed to the extremes that, well, I'm not even going to outline.
Thankfully, one of my children is one of the lucky 200 children now using this Sara Lopez waiver. I'm very, very grateful, but I think the process shouldn't have taken years.
I don't think this blog searcher, if he/she is desperate for help, is the only one out there hoping for real compassion and some tangible support. I'll tell you something. It probably isn't one person's mental health problem that led to any such search. Let's not think that. My honest reaction isn't an uncaring one, I hope, but I'm genuinely not surprised to read that people are googling all kinds of stuff when they're looking for a way out of a bad spot.
Suicide is not the right way. But are we willing to actually fund the right way? I'm asking.
28 June 2012
Summer School Update.
So my tiny blondie boy can apparently take down a kid twice his size on the playground, sit on him, pummel him and rub his face in the dirt. Here I had missed the school's phone call and was sad for Woodjie yesterday when he got off the bus that his knee was dirty and he didn't get his "lining up nicely after recess" sticker. Not getting that sticker was really a big deal and Woodjie was pretty sad about it. He also was telling me about the horror of having a dirty knee, very upsetting. Not a word about the fight.
The school says "maybe they need to give Woodjie more support on the playground," which is a nice way of saying, "We cannot leave this kid alone for ONE STINKIN' MINUTE or he's going to run off or otherwise cause trouble." Which. I agree with. I live with him.
I love this little guy very much, but he can't tell us what started it all. His speech isn't even very understandable to family. I don't know. The other kid could have said or done about anything before he got taken down. Or it could have been a misunderstanding. Or (unlikely) my kid coulda just decided it would be an interesting challenge to try to bully someone the size of a fifth grader.
I am into the autism acceptance thing and all that but realllly wish I could more fully communicate with Woodjie. I don't know how to make him completely understand that this is not ok and to get an adult. Maybe it doesn't matter because now? He will be under constant supervision anyway. Which. I want. But. Wish I didn't have to want.
The school says "maybe they need to give Woodjie more support on the playground," which is a nice way of saying, "We cannot leave this kid alone for ONE STINKIN' MINUTE or he's going to run off or otherwise cause trouble." Which. I agree with. I live with him.
I love this little guy very much, but he can't tell us what started it all. His speech isn't even very understandable to family. I don't know. The other kid could have said or done about anything before he got taken down. Or it could have been a misunderstanding. Or (unlikely) my kid coulda just decided it would be an interesting challenge to try to bully someone the size of a fifth grader.
I am into the autism acceptance thing and all that but realllly wish I could more fully communicate with Woodjie. I don't know how to make him completely understand that this is not ok and to get an adult. Maybe it doesn't matter because now? He will be under constant supervision anyway. Which. I want. But. Wish I didn't have to want.
21 February 2012
Woodjie @ The Kansas City Chess School
23 January 2012
Michigan School Prosecutes Mom for Tardies
Kid, nevermind your autism and how it affects your being able to get to school on time. We think you should just go into foster care and your single momma? We'd like to send her to jail.
Yeah. That's pretty much what this school in Michigan is saying. The mom and son duo start their day TWO HOURS EARLY and still can't make it in time on some days. Have you ever dealt with an autistic child who has it in his head that thank you, he is NOT going some place or another? You have a choice of beating the kid or hoping you can figure out some way to help the situation resolve itself.
This single mom looks like she has everything together at first blush, and maybe she does. But I think before we send her off to jail, maybe it would be cheaper for the taxpayer and better for everyone all around if an autism specialist of some kind were hired to help the mom with techniques that will at least decrease the tardies or help the CHILD to regulate his own schedule a bit better? Or perhaps bring some of those programs in the morning to his home and transport him from there? I don't know what money pot that would come from funding-wise... but... looks like common sense to me. This mom needs help, not jail. It wouldn't "teach" her anything but the fact that the system is stacked against her. I think she knows that already.
I've spoken out against this whole parent "accountability" thing for truancy before. It's just wrong on so many levels. Sure, if kids are signed up to go to school, parents should make *every* effort to ensure their children attend. But wow.
My friend Kerima Cevik is angry about it. "As I read the comments associated with this case, I realize that this woman will go to jail and her son will go into the foster care system," she wrote recently.
"Because no one cares."
"The hate messages are frightening. And everyone assumes she is an irresponsible single mother who along with her son, are just not interested in education. Their judgement is based entirely upon her race. How I will navigate this biased system and keep my son from harm as a woman with the same skin as her, God only knows."
I'm pretty scared about the whole story myself.
12 January 2012
Is This How I Wear My Hat? I Think So.
12 November 2011
Autism and Empathy
Maybe you've never met Woodjie. Most people just love him because he's so friendly and extroverted. Fancy that, an autistic extrovert. Seriously, he IS. He also has a lot of empathy for people when they are sad or hurt, or when things aren't going well. Mind you, he is definitely a little behind-hand on the talking and the understanding thing, and he doesn't understand a lot of the "why" in social situations, "why" someone is sad or feelings are hurt. And unless something is pretty obvious, he's not going to respond to your feelings or tone.
That doesn't mean he doesn't care! Once he figures out someone needs something, he's actually MORE likely to respond with kindness and concern than your average person.
I've had several requests to see the "pirates," what he calls the gash from my recent hernia surgery. I think it's kind of scary to him that Mom got hurt like that. Mom can't let him on her lap and pick him up for "baby wuv" time. He has adjusted pretty well after a while. Now, he will explain, "I huck I tiss you. Then I play!" instead of automatically climbing onto my lap. I think I am having a harder time adjusting than he is. It's just un-natural not to be able to pick small hugging children up. Just wrong. Sure, he threw about 1000 temper fits about it all right at first, but now he has adjusted. I never threw serious screaming temper fits about it... and I have not. Go figure.
I think right now, he understands is that Mom NEEDS him. If I throw something into the trash but barely miss I pretty much can't pick it up off the floor. Woodjie is cute and hard to direct often, and 99% of the time it's just easier to do everything myself. But right now? It isn't. So when I see a friendly fluffy blonde kid bouncing about and declaring, "I hep a YOU, Momma?" I put him to work.
It's genuinely helpful to have the little guy pick up my trash and throw it out when I miss, or open a cabinet, or get laundry into/out of the dryer. Oh, I really need help with that. Basically anything that has to do with squatting or bending down is still hard to do. The trouble comes when I have no little easy jobs for him to do. He still wants to help. I am going to admit to having the kid put washcloths away one at a time so that he will be occupied whilst I fold the other laundry. Or have him run each item to a different basket instead of throwing it in myself.
This little guy has a lot of empathy. He's really sweet. I think sometimes people who don't know many autistic people mistake the disability of understanding when someone needs some empathy with the willingness to give it. Because Woodjie LOVES to help people out when he sees a need for it. Everyone who has ever been to a doctor's office at the same time as our family knows how very important it is to Woodjie that you have a magazine to read. You don't want this magazine? He'll pick a different one. And another and another until you declare that WOW, you really like this magazine, thanks!
It's just what you needed. You just didn't know it when you walked in the door.
That doesn't mean he doesn't care! Once he figures out someone needs something, he's actually MORE likely to respond with kindness and concern than your average person.
I've had several requests to see the "pirates," what he calls the gash from my recent hernia surgery. I think it's kind of scary to him that Mom got hurt like that. Mom can't let him on her lap and pick him up for "baby wuv" time. He has adjusted pretty well after a while. Now, he will explain, "I huck I tiss you. Then I play!" instead of automatically climbing onto my lap. I think I am having a harder time adjusting than he is. It's just un-natural not to be able to pick small hugging children up. Just wrong. Sure, he threw about 1000 temper fits about it all right at first, but now he has adjusted. I never threw serious screaming temper fits about it... and I have not. Go figure.
I think right now, he understands is that Mom NEEDS him. If I throw something into the trash but barely miss I pretty much can't pick it up off the floor. Woodjie is cute and hard to direct often, and 99% of the time it's just easier to do everything myself. But right now? It isn't. So when I see a friendly fluffy blonde kid bouncing about and declaring, "I hep a YOU, Momma?" I put him to work.
It's genuinely helpful to have the little guy pick up my trash and throw it out when I miss, or open a cabinet, or get laundry into/out of the dryer. Oh, I really need help with that. Basically anything that has to do with squatting or bending down is still hard to do. The trouble comes when I have no little easy jobs for him to do. He still wants to help. I am going to admit to having the kid put washcloths away one at a time so that he will be occupied whilst I fold the other laundry. Or have him run each item to a different basket instead of throwing it in myself.
This little guy has a lot of empathy. He's really sweet. I think sometimes people who don't know many autistic people mistake the disability of understanding when someone needs some empathy with the willingness to give it. Because Woodjie LOVES to help people out when he sees a need for it. Everyone who has ever been to a doctor's office at the same time as our family knows how very important it is to Woodjie that you have a magazine to read. You don't want this magazine? He'll pick a different one. And another and another until you declare that WOW, you really like this magazine, thanks!
It's just what you needed. You just didn't know it when you walked in the door.
15 September 2011
Good Story?
An autistic child named Joshua presents difficult behaviours, lack of understanding about danger and frequently runs off. Imagine you're his dad. You have no family and friends and you and your wife need to move out of your home. Need. Foreclosure is hell, and it's gonna BE hell for poor Joshua.
But on to the immediate worry. Furniture doesn't lift itself and guess what? You don't have $50,000 in the bank to hire a mover, sorry. SO, you tether your son in the back yard to keep him safe while you lift the heavy stuff. The last thing you want is that kid running away or tripping you when you are shuffling downstairs and straining your back in the first place. Things are hard enough for you right now.
Ok. Maybe not the best way to handle it. Better than letting him go off into the street, but maybe not the best way to handle it. I wasn't there, so I couldn't tell you. Maybe these folks should have some specially-trained autism specialist or case manager come to their home to HELP them rig it so it's more safe for their son and ohhh, I dunno, maybe get some respite hours so their situation is difficult but not IMPOSSIBLE. Hey, with a two-year-old? Move the furniture out of his room first, leave a few toys in there and pop a safety gate on. You are in and out all the time and kiddo will be ok. What do you do when your child is as big as a small adult, though? Really... besides offering impossible and maddening suggestions like "find someone to help" or (my favourite) "don't have disabled kids," what would you suggest?
The state just took the kid after they found out. Aaand, of course as always happens with these foster kids, they're forced to go to public school. The child is tethered in public school when they change classrooms. For his safety. It isn't abusive when THEY do it, you know, like those awful parents. I mean, the school is GOOD! Here, they let him wander about on the playground freely and -
Hey, wait. Where did he go?
So little Joshua escapes from school and wanders off. They find him off in the wilderness far away... much later. Looks like they drew the poor kid in with... the sound of his father's voice.
Telling you, this story made me want to cry.
I don't know all the particulars of the case, but I sure feel for the parents and for Joshua. All you moms of severely disabled children KNOW THE FEELING. You are just one phone call, one bowel movement or one sickness away from disaster. These children don't understand and they NEED us in a way that other kids never, never do. One moment of inattention and they are outtie. NO FAIR LEAVING ALLCAPS COMMENTS ABOUT 'YOU SHOULD HAVE BEEN LOOKING.' You have no idea how much work it is, how it never ends unless something bad happens. Zee-ro.
I love my Woodjie. A lot. And while I don't tether him, I *do* keep him in a gate system like a baby. Go ahead and say I'm infantilizing him, but it keeps order in my house and defines his area for him. I'm going to take a guess and say the tether did the same for this family. Temporarily. So they could get the furniture out.
Now, yes. Maybe there are other ways of dealing with this. Maybe there are not. Seems the school is using some similar system. I just read this story and instead of thinking of what a "miracle" all this is I wanna go, "Doggone it. He needs more support in school and they need help at home. This story never should have happened." Why does stuff like this have to happen?
But on to the immediate worry. Furniture doesn't lift itself and guess what? You don't have $50,000 in the bank to hire a mover, sorry. SO, you tether your son in the back yard to keep him safe while you lift the heavy stuff. The last thing you want is that kid running away or tripping you when you are shuffling downstairs and straining your back in the first place. Things are hard enough for you right now.
Ok. Maybe not the best way to handle it. Better than letting him go off into the street, but maybe not the best way to handle it. I wasn't there, so I couldn't tell you. Maybe these folks should have some specially-trained autism specialist or case manager come to their home to HELP them rig it so it's more safe for their son and ohhh, I dunno, maybe get some respite hours so their situation is difficult but not IMPOSSIBLE. Hey, with a two-year-old? Move the furniture out of his room first, leave a few toys in there and pop a safety gate on. You are in and out all the time and kiddo will be ok. What do you do when your child is as big as a small adult, though? Really... besides offering impossible and maddening suggestions like "find someone to help" or (my favourite) "don't have disabled kids," what would you suggest?
The state just took the kid after they found out. Aaand, of course as always happens with these foster kids, they're forced to go to public school. The child is tethered in public school when they change classrooms. For his safety. It isn't abusive when THEY do it, you know, like those awful parents. I mean, the school is GOOD! Here, they let him wander about on the playground freely and -
Hey, wait. Where did he go?
So little Joshua escapes from school and wanders off. They find him off in the wilderness far away... much later. Looks like they drew the poor kid in with... the sound of his father's voice.
Telling you, this story made me want to cry.
I don't know all the particulars of the case, but I sure feel for the parents and for Joshua. All you moms of severely disabled children KNOW THE FEELING. You are just one phone call, one bowel movement or one sickness away from disaster. These children don't understand and they NEED us in a way that other kids never, never do. One moment of inattention and they are outtie. NO FAIR LEAVING ALLCAPS COMMENTS ABOUT 'YOU SHOULD HAVE BEEN LOOKING.' You have no idea how much work it is, how it never ends unless something bad happens. Zee-ro.
I love my Woodjie. A lot. And while I don't tether him, I *do* keep him in a gate system like a baby. Go ahead and say I'm infantilizing him, but it keeps order in my house and defines his area for him. I'm going to take a guess and say the tether did the same for this family. Temporarily. So they could get the furniture out.
Now, yes. Maybe there are other ways of dealing with this. Maybe there are not. Seems the school is using some similar system. I just read this story and instead of thinking of what a "miracle" all this is I wanna go, "Doggone it. He needs more support in school and they need help at home. This story never should have happened." Why does stuff like this have to happen?
20 August 2011
Goodbye, PECS Book.
We got this beautiful PECS book when Woodjie was absolutely non-verbal and added to it over time. How it works is this: take several of these little velcro-backed pictures (called PECS) and pop them on the cover. I've organized them on different sheets: foods, toys, places to go, things to do (painting, play-doh), routine items (go to bed, eat, brush teeth). Woodjie can make a choice (for example, to play with bubbles!) and hand it to you. I know, you're saying to yourself, "If he can pick a choice from the board and hand it to you, shouldn't he be able to say the word?" and I'd have to answer, not necessarily. It's also useful to "show" the person you're communicating with what is going on.
*
Woodjie used this to make breakfast and lunch choices (sandwich or bagel? and so on) and communicate some of his needs for a long time. I was cleaning because Woodjie's preschool teacher was coming over and I wanted to pretend that the house is usually neat, and I got a bit overzealous: with Patrick's help, I cleaned out and COMPLETED ALL THE PUZZLES IN THE HOUSE. While I was finding odd pieces here and there in my cabinet, I came across this book. Still in new condition, all lost and forgotten.
*
I cried. You know... for so long, I thought this book or something like it would be a part of our lives forever. And it isn't. I took out the "go home" PECS with our house pictured and other personal items, and gave it away last week.
*
It was my privilege and honour to give it to someone who was instrumental in getting Woodjie to talk. Ms. "P" runs the "communication classroom" (code for: autism room) at the local public preschool. When Woodjie began school at age three, he knew three words: ball, no, and more. He can now say short sentences such as, "I see a animals." Hey, I never said his grammar was great. I just said he can talk. Every word is precious.
*
Because Ms. "P" works in a "communication classroom," she will be able to give it to a family that can REALLY use it. :)
14 July 2011
"See A?"
"I make it a A." Yes, Woodjie got a button for trying so hard to make his A based on my example. Often I had to "hold hand" at his request and show him how to form the letter several times before he'd even try on his own. Five velcro buttons on his token sheet means that he gets to play "DS!" (Really an old GameBoy Color, but he doesn't know that...)*
It's been a long time since he has tried to write anything for me. So this is great progress! He used to know how to write all his letters, but for the past year or so has refused to do so. Now he will write a little for me BUT absolutely refuses to use the potty. "Oh no, oh CWAP!" Woodjie tells me to let me know when it's time for a change. Do you know how yucky it is to change a kid who is nearly five? We can be thankful he only *somehow* learnt how to say cwap, yes?
*
Other times when it's time to "work," I'll have him look at picture cards and tell me what he sees. The other day everything was "goat" and it was HILARIOUS. No, I wasn't laughing. He was. Every answer. "Goat." Then he'd mix up the answers on purpose and laugh about them. I finally got him to give me one good correct response to the "teddy bear" card. I made sure to praise him and tell him how much teddy bear loves him.
*
"No," he told me simply. "Ee dead." Um, that's not nice to say and OF COURSE the teddy is just fine and is going to give you a kiss. "No..." he said rather patronizingly, as though explaining to someone extreeemely stupid. "Ee DEAD. Ee no do wat." ("He doesn't do that.")
*
Poor little guy doesn't understand much and I'm not sure how to explain things to him. Honestly I'm sort of disturbed by this "dead teddy" idea, though it occurs to me that "Dead Teddy" might be an excellent name for a heavy metal band.
05 June 2011
The Ugly Truth
(Pictures: two sets of rock garden before/after shots.) When I tell people that I have several autistic children, they somehow seem to think that I am some walking marvel who can magically get everything done. The reality is that I cannot. *
My yard is overgrown and the poison ivy and small wild trees are literally five feet tall in some places. I cannot "just" go outside with the children and get things finished. I cannot "just" schedule my own medical appointments. I have to wait until summertime and then decide whether it's worth asking Patrick to take on a paid babysitting job. My husband is already "just" taking all the time off from work he can so that I can attend at least some dopey IEP meetings during the school year without ALLLLL the smaller children and he can get the dopey medical appointments done for certain children downtown or we can get cars serviced, or he takes days off when big things come up, etc. (nevermind vacations... they do not happen). The reality is that my basement is stacked full of crap almost five feet high (six to seven in some places) because I cannot, I do not, "just" have the time to sort through my things.
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I'm very exasperated almost all the time.
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I don't know where to put my stuff or my anger. I feel left behind by all of life. As it stands, I had to pay Patrick $10 so that I could have the honour of digging around outside today. I'm very sore and for some reason my elbows hurt from pulling weeds. Soon, I will be paying him $10 for the honour of getting my teeth cleaned and having the pearly-white toothed hygenist ask me whether I ever even brush my teeth and show me on the model how to floss. Insulting.
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And my weight. I "just" don't have time to cook good meals for myself and have eaten an entire bag of goldfish this afternoon. Not bad, you think? It is if you shop at Sam's Club. That's the sort of dinner I eat around these parts, but I have at least weaned myself off of the Oreos. I had one today, for the first time in about two weeks. And I stopped at one. So I am heartened that I do have some self-control.
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So I just want to tell you that... SOMEDAY, I'm going to be ok. SOMEDAY I will find a place to put all this anger. SOMEDAY I will stop screaming all the time. SOMEDAY my house is going to be organized. I don't mean perfect. I just mean I'm going to be all right. I am having a very hard time figuring out how on earth to live from day to day, but someday I'm going to be all right.
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I just don't know how to get there.
25 May 2011
Sigh.
'“I just wanted a multigrain bagel,” Professor Rosenthal said. “I refused to say ‘without butter or cheese’. When you go to Burger King, you don’t have to list the six things you don’t want. Linguistically, it’s stupid, and I’m a stickler for correct English.”' Article.
Honestly, I could see this sort of thing escalating easily with a number of my own children. It ended up with the cops coming in and ejecting the customer from the place. How about the people in Starbucks just give her a plain ol' bagel, and if she wanted something with it she could ask for it?
The other day we had a horrid fight in the doctor's office. Horrid. We were trying to pass the time and G's idea of a game is to think of a thing and we would get twenty questions to ask ("Is it an airplane?" and so on.) The odds of getting the "thing" are pretty slim, the universe being as vast as it is, but there you go.
Emperor guessed things like "freedom from sin" and "liberation," and G got doggone angry. It's a NOUN, G told him. You have to guess a NOUN.
Emperor said that "freedom" IS a noun, for it is an idea. G then accused me of teaching Emperor "all wrong in this homeschooling" and meanwhile, the lady behind the next curtain (we were getting a cast removed... eventually) started cussing about how much F'in pain she was in. I'm trying to ignore the cussing and the lady's family - I'm guessing the ol' bat was senile - are trying to discuss good language around children.
G is still going on about how he is getting "seriously pissed off" at Emperor's deliberately not guessing anything close to what he was hoping would make for a good game. Tears are welling up in Emperor's eyes. Awww.
Just tell him it's a CONCRETE NOUN, G, and he will understand. He doesn't understand just "noun." I don't know why, but when you ask him things like "guess a number," you must specify that it is a positive integer. Just trust me on this. He is not meaning to get you angry.
"I'm seriously pissed off," G is telling me. "You know, someday when he goes to *real school* all the kids are going to make fun of him."
I was not about to verbally agree with him then, but yeahh, you think? My schooling the child and teaching him that nouns can also be ideas is just wack. He needs some real school, that boy does.
But fool that I am, I'm trying to negotiate and redirect the conversation. Just guess a concrete noun, tiny Emperor, ok?
*sniff* Ok.
"Table?"
"See, G?" I asked.
"See what?"
He gets it now, I told him. G reiterates how *messed up* I have made my kid. Blehh.
Anyway... sometimes we just need to be tolerant of the language-y idiosyncracies of others. I hope this professor who just plain old wanted a multigrain bagel finds a place that understands. :)
Honestly, I could see this sort of thing escalating easily with a number of my own children. It ended up with the cops coming in and ejecting the customer from the place. How about the people in Starbucks just give her a plain ol' bagel, and if she wanted something with it she could ask for it?
The other day we had a horrid fight in the doctor's office. Horrid. We were trying to pass the time and G's idea of a game is to think of a thing and we would get twenty questions to ask ("Is it an airplane?" and so on.) The odds of getting the "thing" are pretty slim, the universe being as vast as it is, but there you go.
Emperor guessed things like "freedom from sin" and "liberation," and G got doggone angry. It's a NOUN, G told him. You have to guess a NOUN.
Emperor said that "freedom" IS a noun, for it is an idea. G then accused me of teaching Emperor "all wrong in this homeschooling" and meanwhile, the lady behind the next curtain (we were getting a cast removed... eventually) started cussing about how much F'in pain she was in. I'm trying to ignore the cussing and the lady's family - I'm guessing the ol' bat was senile - are trying to discuss good language around children.
G is still going on about how he is getting "seriously pissed off" at Emperor's deliberately not guessing anything close to what he was hoping would make for a good game. Tears are welling up in Emperor's eyes. Awww.
Just tell him it's a CONCRETE NOUN, G, and he will understand. He doesn't understand just "noun." I don't know why, but when you ask him things like "guess a number," you must specify that it is a positive integer. Just trust me on this. He is not meaning to get you angry.
"I'm seriously pissed off," G is telling me. "You know, someday when he goes to *real school* all the kids are going to make fun of him."
I was not about to verbally agree with him then, but yeahh, you think? My schooling the child and teaching him that nouns can also be ideas is just wack. He needs some real school, that boy does.
But fool that I am, I'm trying to negotiate and redirect the conversation. Just guess a concrete noun, tiny Emperor, ok?
*sniff* Ok.
"Table?"
"See, G?" I asked.
"See what?"
He gets it now, I told him. G reiterates how *messed up* I have made my kid. Blehh.
Anyway... sometimes we just need to be tolerant of the language-y idiosyncracies of others. I hope this professor who just plain old wanted a multigrain bagel finds a place that understands. :)
23 May 2011
Disabled Parent Rights.
Hey, parental rights isn't just for homeschoolers. Did you know you could lose your children in Missouri *just* because you're disabled? It's true.
Now there is a new law, going into effect in August, that would change that. The state can no longer take away your children *just* because you are disabled. Umm, but note that nowhere in this blog posting did it say that it could not be a major, major factor in a judge's decision? Thought I'd mention it. According to the post, between 40 and 60 percent of children of disabled parents are removed from their homes in Missouri!
Now there is a new law, going into effect in August, that would change that. The state can no longer take away your children *just* because you are disabled. Umm, but note that nowhere in this blog posting did it say that it could not be a major, major factor in a judge's decision? Thought I'd mention it. According to the post, between 40 and 60 percent of children of disabled parents are removed from their homes in Missouri!
10 May 2011
How We Work at Home
Woodjie has a little drawer full of coloured plastic animals, flash cards, his Game Boy, and a Boggle timer. As you can see, his worksheet is a laminated picture of him with five velcro buttons. There are real buttons with sticky velcro on them we use as tokens. When the board is full, Woodjie gets to play with his Game Boy until the timer runs out.
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I have flash cards from school that I laminated (smiley face = "happy," or we have "heart" and other common words). I show some of these to him and after I feel he's done enough to earn a token, I give him a button. There really are no rules as to how many he must answer correctly. Sometimes I give out buttons when I see he was frustrated but did a good job on a card. Other times he's zooooming through his cards and perhaps I give him a button when he finally pauses for breath!
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The girl is usually nearby doing her own activity (today it was stringing plastic beads). Woodjie is very proud of his work and is showing his sister his game on the Game Boy in the last picture.
25 April 2011
The Trip to Holland.
I know you've heard the story.
You get ready for a trip to Italy, and you learn Italian, and you're all ready to eat the native foods and go to the native places and see the sights, but you get dumped off in Holland. Then somehow you're la-la-la-ing your way through Holland, clicking your wooden clogs happily and revelling in the blessings of tulips and windmills. This, or so the analogy goes, is just how it feels to have a "special" child, and aren't we all glad we're in Holland together?
Dang straight, I'm not. Twerp alert: I paid for Italy. I'm feeling gypped.
And gimme a break. Don't even tell me that the second you got off that plane, that you wouldn't be yelling at every single ticket agent, the pilot, the stewardesses, the radar tower people, God and some random puppy that got in your way that day. (No, you'd kick the puppy. You're just that mad.) I'm telling you, I'd have the most colossal temper fit you'd ever seen, right in the airport. It would look something like this, but you have to picture this scene with a middle-aged fat white woman roly-polying all over the ground and snotting everywhere.
But the analogy isn't really a fair one. Because really, you're IN ITALY but no longer able to speak Italian with the people who surround you. You can no longer eat the foods you wanted to eat or go to the places you wanted to see as a parent. Sure, you can love your little Dutchman and pinch his little Campbell's soup kid cheeks, and you can rejoice in the fact that your child is a gift from God. And you can yodel with him or whatever it is that those Dutch people do. (I know they don't yodel... that was just me trolling for comments by being provocative.)
That doesn't mean that when your child doesn't speak and the other kids the same age in the church nursery are using the potty and giving an entire monologue, that you don't feel jealous. And angry. Why are we all working so hard, and things are still difficult?
It doesn't mean you don't want to smack some people upside the head, either. Do you know how aggravating it is to deal with stares and comments, knowing this is some horrible joke God is playing on your poor child? Here, you can be reasonably assured the know-it-all who advises you on child rearing in the local Wal-Mart hasn't had to deal with one stinkin' tenth of the problems you've been handling. And her kids don't have one stinkin' tenth of the obstacles to overcome your child does.
You feel jealous of the easy life those people have. You wish *you* had the easy life with *your* children and that you could be the one giving the stupid advice to Ms. Stupid and the Stupid Twins on checkout aisle 15. But nooooo. God puts all this on your family, and then you're supposed to suck it up and be gracious.
It isn't fair. Not that I'm doing so hot on the being gracious thing, and not that I'm doing so hot on even caring about not doing so hot on the being gracious thing. I just don't have any energy left to do that, you know?
You get ready for a trip to Italy, and you learn Italian, and you're all ready to eat the native foods and go to the native places and see the sights, but you get dumped off in Holland. Then somehow you're la-la-la-ing your way through Holland, clicking your wooden clogs happily and revelling in the blessings of tulips and windmills. This, or so the analogy goes, is just how it feels to have a "special" child, and aren't we all glad we're in Holland together?
Dang straight, I'm not. Twerp alert: I paid for Italy. I'm feeling gypped.
And gimme a break. Don't even tell me that the second you got off that plane, that you wouldn't be yelling at every single ticket agent, the pilot, the stewardesses, the radar tower people, God and some random puppy that got in your way that day. (No, you'd kick the puppy. You're just that mad.) I'm telling you, I'd have the most colossal temper fit you'd ever seen, right in the airport. It would look something like this, but you have to picture this scene with a middle-aged fat white woman roly-polying all over the ground and snotting everywhere.
But the analogy isn't really a fair one. Because really, you're IN ITALY but no longer able to speak Italian with the people who surround you. You can no longer eat the foods you wanted to eat or go to the places you wanted to see as a parent. Sure, you can love your little Dutchman and pinch his little Campbell's soup kid cheeks, and you can rejoice in the fact that your child is a gift from God. And you can yodel with him or whatever it is that those Dutch people do. (I know they don't yodel... that was just me trolling for comments by being provocative.)
That doesn't mean that when your child doesn't speak and the other kids the same age in the church nursery are using the potty and giving an entire monologue, that you don't feel jealous. And angry. Why are we all working so hard, and things are still difficult?
It doesn't mean you don't want to smack some people upside the head, either. Do you know how aggravating it is to deal with stares and comments, knowing this is some horrible joke God is playing on your poor child? Here, you can be reasonably assured the know-it-all who advises you on child rearing in the local Wal-Mart hasn't had to deal with one stinkin' tenth of the problems you've been handling. And her kids don't have one stinkin' tenth of the obstacles to overcome your child does.
You feel jealous of the easy life those people have. You wish *you* had the easy life with *your* children and that you could be the one giving the stupid advice to Ms. Stupid and the Stupid Twins on checkout aisle 15. But nooooo. God puts all this on your family, and then you're supposed to suck it up and be gracious.
It isn't fair. Not that I'm doing so hot on the being gracious thing, and not that I'm doing so hot on even caring about not doing so hot on the being gracious thing. I just don't have any energy left to do that, you know?
23 February 2011
My New Underwear
Yep. Everybody look at it. I've been wanting a pair like this for a long time. Woodjie is pretty much dry all the time, so long as one of his caregivers (me, D or Patrick) remembers to take him to the bathroom regularly. He doesn't ASK to go potty, but he can go and get a Smartie if he's dry. Poop? Another matter entirely. It bothers me immensely to keep shelling out a fortune on pull-ups, and even the largest diapers are too small and mark his hips. Underwear and that sort of thing is a messy proposition as one must pull it down (eew, smeary!) or cut it off the sides and toss out (dangerous/expensive). So... I am purchasing from Etsy for the first time. If you are interested in buying something for your older child, I'd suggest a custom order from diapermonster. She has worked with me and we've gotten down to a size/design I think we'll be very happy with. See the snaps? Mine doesn't have the waterproof lining so that we can get pretty close to "real" underwear as reasonably possible. What do you think?
20 December 2010
Nothing is Wrong.
"I'm not disabled! There's nothing wrong with me! I hate when you say that, and make things up about me!"
Well, a certain teen doesn't agree with the diagnosis of a renowned children's hospital developmental team, and that's fine. Or the diagnoses (identical) given by several other professionals from other organizations. And the fact that the Regional Center actually got around to FUNDING said teen doesn't mean anything when Elf has been on the list for years with zero help.
And the unnamed teen doesn't care that the (also unnamed) semigovernmental department, that sends a worker out for eight hours a week in our home, seems to agree that he is disabled and needs help. (That's fun, having someone in your home all the time telling you how to parent. The alternative? We could lose all our children if things go wrong and someone gets hurt after a blowup. Yay.)
Oh! Oh! Or the ENTIRE STATE of Missouri. They have consented to fund this particular teen for the Sara Lopez waiver, which basically gives Medicaid services to *just* 200 minors in the state who don't quite qualify for Medicaid financially, but who have needs SO SEVERE that they're concerned the child would be institutionalized otherwise. In this time of cutbacks, please don't think they hand out services to people who don't meet income guidelines *just* because they look pretty like me, ok? :)
So yeah. I enjoy making all this stuff up about his being disabled. I must have that Munchausen by proxy syndrome thing because it's just sooo much fun going to all appointments. Look at how glamourous I am as I enter the center for another session where my parenting is questioned and micromanaged! While I bring all the other children and they get to hear this crap because I have no sitter! The clients are always innnteresting there. But I'm walking the carpet! Snap a photo! Striking a pose -
* Vogue, Vogue *
Ha ha! Ok, y'all just WISH you were me. I'm a star, I tellya. No wonder the teen thinks I'm making it all up! I get sooo much validation and luv from everyone I have to work with on his imaginary problems. It brings joy to my life and gives me purpose. I had nothing else to do. I also think working with the public school is sexxxy and IEPs are hott. Just so you know.
Though our case manager from the Regional Center tells me that all teens are "not disabled." They are all like that. It's disappointing, though, because I thought I had trained my children to accept themselves for who they are while working TOWARD being functional in certain areas. It makes me sad, for instance, to hear Elf pray that he would just be "normal."
And yet... I cannot say I want to take his valid feelings away from him. I look at his going to school next year and think, know what? He can't even cross the street. He can't be left alone in a Sunday School class. He can't follow simple directions in a crowd; it's just all over once he walks away from his siblings or Mom. I'm worried. Maybe he is praying for "normal" because he is worried, too.
So... do you tell your child he's disabled? I don't mean in a constant, belittling way. I mean... do they know what their diagnoses are? And does your kid believe it? Are you the bad guy for mentioning it? Leave a comment here and I'll read it before my next photoshoot.
Well, a certain teen doesn't agree with the diagnosis of a renowned children's hospital developmental team, and that's fine. Or the diagnoses (identical) given by several other professionals from other organizations. And the fact that the Regional Center actually got around to FUNDING said teen doesn't mean anything when Elf has been on the list for years with zero help.
And the unnamed teen doesn't care that the (also unnamed) semigovernmental department, that sends a worker out for eight hours a week in our home, seems to agree that he is disabled and needs help. (That's fun, having someone in your home all the time telling you how to parent. The alternative? We could lose all our children if things go wrong and someone gets hurt after a blowup. Yay.)
Oh! Oh! Or the ENTIRE STATE of Missouri. They have consented to fund this particular teen for the Sara Lopez waiver, which basically gives Medicaid services to *just* 200 minors in the state who don't quite qualify for Medicaid financially, but who have needs SO SEVERE that they're concerned the child would be institutionalized otherwise. In this time of cutbacks, please don't think they hand out services to people who don't meet income guidelines *just* because they look pretty like me, ok? :)
So yeah. I enjoy making all this stuff up about his being disabled. I must have that Munchausen by proxy syndrome thing because it's just sooo much fun going to all appointments. Look at how glamourous I am as I enter the center for another session where my parenting is questioned and micromanaged! While I bring all the other children and they get to hear this crap because I have no sitter! The clients are always innnteresting there. But I'm walking the carpet! Snap a photo! Striking a pose -
* Vogue, Vogue *
Ha ha! Ok, y'all just WISH you were me. I'm a star, I tellya. No wonder the teen thinks I'm making it all up! I get sooo much validation and luv from everyone I have to work with on his imaginary problems. It brings joy to my life and gives me purpose. I had nothing else to do. I also think working with the public school is sexxxy and IEPs are hott. Just so you know.
Though our case manager from the Regional Center tells me that all teens are "not disabled." They are all like that. It's disappointing, though, because I thought I had trained my children to accept themselves for who they are while working TOWARD being functional in certain areas. It makes me sad, for instance, to hear Elf pray that he would just be "normal."
And yet... I cannot say I want to take his valid feelings away from him. I look at his going to school next year and think, know what? He can't even cross the street. He can't be left alone in a Sunday School class. He can't follow simple directions in a crowd; it's just all over once he walks away from his siblings or Mom. I'm worried. Maybe he is praying for "normal" because he is worried, too.
So... do you tell your child he's disabled? I don't mean in a constant, belittling way. I mean... do they know what their diagnoses are? And does your kid believe it? Are you the bad guy for mentioning it? Leave a comment here and I'll read it before my next photoshoot.
10 December 2010
More Chess News
Emperor now has another name. It's "A Gust of Wind." Yep. Some of the boys in the chess league were calling him that when they were discussing him... and it sorta fits. He does talk a great deal, and it does sound rather like his real name. (You DID know that "Emperor" is not his real name, right??)
After the chess league a couple weeks ago, I talked with Emperor about the nickname and why we realllly need not to be some raptor-thing squawking about during chess league, and we need to stop yapping during the games (occasional talking is fine, monologue not) and so on and so on. I don't want to tell him this, but the Hello Kitty shirts, red pants and plaid shirts already sorta make him stand out. Yes, he does wear them all at the same time. His father draws the line at allowing him out in the Hello Kitty jammie pants anymore, though.
But Emperor LIKES his nickname. That no one ever called him to his face. That Mom simply relayed to him so that he could... you know... behave a bit better. He wants to find out who nicknamed him, but no one will admit to it, or even admit that they have ever called him any such thing.
Oh, well. He's signed up as A-Gust-of-Wind on chesskid.com. Sometime if your children are on the site, you may find them playing against him. Elf is "Elf-of-the-Century." Well, he had to nickname himself. The boys are spending hours on chess, chess and more chess. They move about without really thinking too much about it and wonder why they get beaten. But Elf claims that he is going to make his living by playing chess. Note how the dreams of being a pastor are totally shot, which is probably just as well. I can't imagine the kid managing interpersonal conflicts and the drama that would come with running a church.
Not to mention, he's kinda naive and takes what people say at face value. Yesterday I told him that there really was a such thing as a parallel universe, and that you see inside them when you stand in front of a mirror and hold a mirror. Further, the quantum physicists of the migalpinsphere recently discovered that you can see JESUS, who is the center of all parallel universes, inside the very last mirror, waving and saying, "You found Me!" He ran off yelling, excited to go try it. And then he claimed he could ALMOST see Jesus at the very end. HE NEEDS A BIGGER MIRROR!
He's dangerous, left on his own, really. It didn't help that Patrick snuck up behind him and yelled, "You found me!" Dork. Worse still, he told the poor kid that Jesus doesn't really want to be his friend unless he gets a bribe. God likes blue beads the best.
"But he already has a bribe!" Elf said. "It's the Church!" Siigh. The Church. The Bribe of Christ.
Oh, good gracious, they're cute, but they're going to be teens before you know it! And despite my best training, they haven't purchased any clues about the world and how to live in it without getting taken advantage of and/or thought of as being very silly just yet.
After the chess league a couple weeks ago, I talked with Emperor about the nickname and why we realllly need not to be some raptor-thing squawking about during chess league, and we need to stop yapping during the games (occasional talking is fine, monologue not) and so on and so on. I don't want to tell him this, but the Hello Kitty shirts, red pants and plaid shirts already sorta make him stand out. Yes, he does wear them all at the same time. His father draws the line at allowing him out in the Hello Kitty jammie pants anymore, though.
But Emperor LIKES his nickname. That no one ever called him to his face. That Mom simply relayed to him so that he could... you know... behave a bit better. He wants to find out who nicknamed him, but no one will admit to it, or even admit that they have ever called him any such thing.
Oh, well. He's signed up as A-Gust-of-Wind on chesskid.com. Sometime if your children are on the site, you may find them playing against him. Elf is "Elf-of-the-Century." Well, he had to nickname himself. The boys are spending hours on chess, chess and more chess. They move about without really thinking too much about it and wonder why they get beaten. But Elf claims that he is going to make his living by playing chess. Note how the dreams of being a pastor are totally shot, which is probably just as well. I can't imagine the kid managing interpersonal conflicts and the drama that would come with running a church.
Not to mention, he's kinda naive and takes what people say at face value. Yesterday I told him that there really was a such thing as a parallel universe, and that you see inside them when you stand in front of a mirror and hold a mirror. Further, the quantum physicists of the migalpinsphere recently discovered that you can see JESUS, who is the center of all parallel universes, inside the very last mirror, waving and saying, "You found Me!" He ran off yelling, excited to go try it. And then he claimed he could ALMOST see Jesus at the very end. HE NEEDS A BIGGER MIRROR!
He's dangerous, left on his own, really. It didn't help that Patrick snuck up behind him and yelled, "You found me!" Dork. Worse still, he told the poor kid that Jesus doesn't really want to be his friend unless he gets a bribe. God likes blue beads the best.
"But he already has a bribe!" Elf said. "It's the Church!" Siigh. The Church. The Bribe of Christ.
Oh, good gracious, they're cute, but they're going to be teens before you know it! And despite my best training, they haven't purchased any clues about the world and how to live in it without getting taken advantage of and/or thought of as being very silly just yet.
05 December 2010
Woodjie's Birthday
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Look Out, Dad!!
My father is the purple dot above the blue weather station. He's juuust outside Milton's evacuation zone. Well! My brother and I jus...
