Wednesday, October 17, 2007
Tuesday, October 16, 2007
Ads in comments
Please do not post advertisements in my comments. I do not care what you are selling. I will delete them. Thank you.
Monday, October 15, 2007
Sunday, October 14, 2007
In light of recent events
I began this blog under siege.
The world of special education, the world of autism parents, the world of therapy offices is a strange, labyrinthine place. There is ashes and dust and pits pits pits. But there is also eleanor and ents and elves. I still sometimes feel I am fighting the Long Defeat.
As a parent of a newly diagnosed autistic child, trying desperately to find the best ways to support him, I was stunned by the quagmire of information, misinformation, bullying, exploitation, abuse, and manipulation. I've been trained to research, to think critically, to sift through fact and fancy and analyze the findings. Yet I found myself with snippets of information, impassioned beliefs, and little I could assign as "fact."
I was in a sea of ABA Fascists who insisted that every autistic child receive 40 hours of ABA therapy. I was surrounded by parents subjecting their children to shots, diets, creams, medicines, herbals, and therapies for which I could find no substance or reason. I was judged a bad mom for protecting my children against diseases that not only kill, but had killed children in our very own neighborhood, one not a year before Joey was born. I was publicly judged a bad mom for not subjecting my child to hours and hours of repetitive, unindividualized and static methods of teaching by poorly trained college kids. I was judged a bad mom for taking my kids out in public, teaching them hands-on like any other kids. Other parents stopped speaking to me because I wasn't approaching Joey and autism the way they did, using the methods they employed for their own children, advocating for the services they wanted for their own kids. I was given a book by the doctor that proclaimed 70% of children with autism are mentally retarded. Joey would never be independent. He would never understand other people as anything but objects. He would never be able to read emotions. He may never speak, or communicate at all. He would never form relationships.
I can only speak for the truths I have discovered about my own children. I am still discovering; but there are some facts I can present without doubt or hesitation. My children are not metal-poisoned. Not lead, not mercury, not aluminum, not cadmium, not arsenic, I could go on. My children have "theory of mind." Joey knows Andy likes dinosaurs, for example. When he was picking out a treat for himself today, he insisted on picking out a dinosaur for Andy, because he knew- and communicated to us- that Andy would like it. My children are not mentally retarded. My children have friends, and are very attached to them. Joey and Andy both not only communicate, but want to communicate and relate to other people. ABA has helped Joey. He does not need 40 hours of discrete trial training per week. My children are is not allergic to gluten, casein, or chocolate. Joey was already autistic when he was born. Joey is a beautiful, wonderful, joyful, intelligent, squishable little boy. I love Joey. Andy is not autistic. He is a handsome, loving, fantastic, smoochable little boy. I love Andy, too.
There I stand.
I started this blog in hopes of communicating with other parents who may feel lost in the quagmire. In a community that desperately needs parents who are united, networked, and supportive of the diversity of approaches and coping strategies, we are instead often isolated by other parents who think they have the one and only answer. I wanted fewer parents to feel desperate, alone, and forever separated from the gifts God has given them- their children. As they are. Start from here. I wanted to dispel a little of the fear, the uncertainly, the isolation, the dark.
What I found was that I am not alone. There is nothing to fear. And you'll separate me from my children when you pry them from my cold, dead fingers, thank you very much.
Thank you, Kev.
The world of special education, the world of autism parents, the world of therapy offices is a strange, labyrinthine place. There is ashes and dust and pits pits pits. But there is also eleanor and ents and elves. I still sometimes feel I am fighting the Long Defeat.
As a parent of a newly diagnosed autistic child, trying desperately to find the best ways to support him, I was stunned by the quagmire of information, misinformation, bullying, exploitation, abuse, and manipulation. I've been trained to research, to think critically, to sift through fact and fancy and analyze the findings. Yet I found myself with snippets of information, impassioned beliefs, and little I could assign as "fact."
I was in a sea of ABA Fascists who insisted that every autistic child receive 40 hours of ABA therapy. I was surrounded by parents subjecting their children to shots, diets, creams, medicines, herbals, and therapies for which I could find no substance or reason. I was judged a bad mom for protecting my children against diseases that not only kill, but had killed children in our very own neighborhood, one not a year before Joey was born. I was publicly judged a bad mom for not subjecting my child to hours and hours of repetitive, unindividualized and static methods of teaching by poorly trained college kids. I was judged a bad mom for taking my kids out in public, teaching them hands-on like any other kids. Other parents stopped speaking to me because I wasn't approaching Joey and autism the way they did, using the methods they employed for their own children, advocating for the services they wanted for their own kids. I was given a book by the doctor that proclaimed 70% of children with autism are mentally retarded. Joey would never be independent. He would never understand other people as anything but objects. He would never be able to read emotions. He may never speak, or communicate at all. He would never form relationships.
I can only speak for the truths I have discovered about my own children. I am still discovering; but there are some facts I can present without doubt or hesitation. My children are not metal-poisoned. Not lead, not mercury, not aluminum, not cadmium, not arsenic, I could go on. My children have "theory of mind." Joey knows Andy likes dinosaurs, for example. When he was picking out a treat for himself today, he insisted on picking out a dinosaur for Andy, because he knew- and communicated to us- that Andy would like it. My children are not mentally retarded. My children have friends, and are very attached to them. Joey and Andy both not only communicate, but want to communicate and relate to other people. ABA has helped Joey. He does not need 40 hours of discrete trial training per week. My children are is not allergic to gluten, casein, or chocolate. Joey was already autistic when he was born. Joey is a beautiful, wonderful, joyful, intelligent, squishable little boy. I love Joey. Andy is not autistic. He is a handsome, loving, fantastic, smoochable little boy. I love Andy, too.
There I stand.
I started this blog in hopes of communicating with other parents who may feel lost in the quagmire. In a community that desperately needs parents who are united, networked, and supportive of the diversity of approaches and coping strategies, we are instead often isolated by other parents who think they have the one and only answer. I wanted fewer parents to feel desperate, alone, and forever separated from the gifts God has given them- their children. As they are. Start from here. I wanted to dispel a little of the fear, the uncertainly, the isolation, the dark.
What I found was that I am not alone. There is nothing to fear. And you'll separate me from my children when you pry them from my cold, dead fingers, thank you very much.
Thank you, Kev.
Friday, October 12, 2007
Split Court
The Supreme Court split on a court case in New York. The focus of the case was, in brief, are parents required to try out a demonstrably inappropriate IEP before challenging it?
Note the words: demonstrably inappropriate.
And the court split.
I am so angry I could spit.
It's not just a matter of not giving the public school a chance. This is about the school offering an inappropriate program, and then telling you if you don't like it, sue us.
The point of the IDEA is to provide free and appropriate education. As in, knowing that your program is inappropriate means you need to make some changes and adjustments or even create a new program so the child can get an appropriate education. As in, not offering appropriate service means a child will not have a chance to be properly educated and have a shot at independent living.
When a school offers an IEP, it is supposed to take the parent as an equal member of the forming committee. It is far more comon that they present what services they want to offer your kid, and you have to decide to take it, leave it, or threaten to sue (which can lead to actually suing). Often, parents are not told about services that would be appropriate for their child (even if the services are being provided to other students!)
The problem is the school is given both the responsibility for providing services AND the responsibility to remain within small budgets. Everyone who has the power to provide the service also has the pressure of the purse strings. And folks, those people know who signs the paychecks, and parents are not that person. We can scream "taxpayer, paying your salary!" all we want, but ultimately, it is not our name on that check, but the name of a person pressured to spend as little money as possible. Speech therapy, occupational therapy, physical therapy, ABA, floor time, one-on-one instruction and testing... and anything else you can think of... costs money. It is far cheaper to not offer these things, and to get away with not offering them if you can. The chances of that parent suing, and winning, are so not good that it is worth a chance to offer services known to be inappropriate, inadequate... and cheap.
When you can demonstrate that an IEP is inappropriate, why should your child be subjected to that known inappropriate placement? I don't care if the kid has "time to waste" or not (does ANY child have "time to waste" in education??? Life is short!). Our money pays for that inappropriate service and placement- and therefore wastes our money! It wastes time of the teachers, the service providers, the admin, the lawyers, the parents... it wastes resources that could be appropriate for another child.
How on earth can anoyone be split on this?? How can you think it is in any way the right thing to subject a child to inappropriate program and service? How can anyone possibly think the law is intended to force kids to "try out" a demonstrably inappropriate placement?
That, folks, is how kids get abused.
Note the words: demonstrably inappropriate.
And the court split.
I am so angry I could spit.
It's not just a matter of not giving the public school a chance. This is about the school offering an inappropriate program, and then telling you if you don't like it, sue us.
The point of the IDEA is to provide free and appropriate education. As in, knowing that your program is inappropriate means you need to make some changes and adjustments or even create a new program so the child can get an appropriate education. As in, not offering appropriate service means a child will not have a chance to be properly educated and have a shot at independent living.
When a school offers an IEP, it is supposed to take the parent as an equal member of the forming committee. It is far more comon that they present what services they want to offer your kid, and you have to decide to take it, leave it, or threaten to sue (which can lead to actually suing). Often, parents are not told about services that would be appropriate for their child (even if the services are being provided to other students!)
The problem is the school is given both the responsibility for providing services AND the responsibility to remain within small budgets. Everyone who has the power to provide the service also has the pressure of the purse strings. And folks, those people know who signs the paychecks, and parents are not that person. We can scream "taxpayer, paying your salary!" all we want, but ultimately, it is not our name on that check, but the name of a person pressured to spend as little money as possible. Speech therapy, occupational therapy, physical therapy, ABA, floor time, one-on-one instruction and testing... and anything else you can think of... costs money. It is far cheaper to not offer these things, and to get away with not offering them if you can. The chances of that parent suing, and winning, are so not good that it is worth a chance to offer services known to be inappropriate, inadequate... and cheap.
When you can demonstrate that an IEP is inappropriate, why should your child be subjected to that known inappropriate placement? I don't care if the kid has "time to waste" or not (does ANY child have "time to waste" in education??? Life is short!). Our money pays for that inappropriate service and placement- and therefore wastes our money! It wastes time of the teachers, the service providers, the admin, the lawyers, the parents... it wastes resources that could be appropriate for another child.
How on earth can anoyone be split on this?? How can you think it is in any way the right thing to subject a child to inappropriate program and service? How can anyone possibly think the law is intended to force kids to "try out" a demonstrably inappropriate placement?
That, folks, is how kids get abused.
Thursday, October 11, 2007
Testing
Talked with Joey's teacher today. I really have a lot of confidence in both of Joey's teachers. He is having a fabulous time at school and clearly coming along. But I have to say, testing is a crock.
It would be one thing if the goal of testing was to understand what a child knows and understands, and what requires more work. When I give a test, this is what I am doing. Testing is a tool. But most testing in the schools is not geared to understanding what children know. It is geared to finding out what non-disabled children can recall within a certain format.
The Commonwealth of Virginia has implemented something called the Standards of Learning. I sure there are many excellent blogs on the subject, pros, cons, and everything in-between. I will say that having looked over the SOL goals with some care, there are pros and cons. The main pro is that kids have definite things they are learning throughout the year, following set "guidelines" so that I as a parent can determine what my child is learning in school in any given month, and can support those lessons at home. And they are good lessons, like learning about the senses and the world and the basics of academics. The con comes from a lack of flexibility, overwhelming children with material, and the measurments used to determine whether the children are learning the lessons. Testing my child with a verbal-heavy test where he has to carefully fill in little "bubbles" isn't going to help much, other than to tell me he's not very good at that kind of a test because of the auditory processing and the question processing. I already know he's autistic, thanks. What I want to know is does he know the material? And do we have an effective way for him to communicate that information and use that information? Another con is that the standards are so set and inflexible, Joey ends up having to do what to him is busy-work. He already knows his shapes, colors, numbers and letters. Yet here they are again. Is he not answering these questions about community helpers because he is bored? Or because he can't process the question format? Or because he genuinely has no clue what a fireman does? It is impossible to tell.
We do have some basic accommodations in his IEP, like one-on-one testing, visual prompts, and flex-testing (if he's clearly not going to test well, or gets tired, the teacher can stop testing for that day and try again later.) I think I'd feel better if more signing was used and permitting during testing, but I don't think the teachers are trained and know enough sign to do that. I just fear people who are not special ed folks- ie, most of the school teachers and admin- are going to dismiss him as stupid because of state-mandated tests which are poorly designed (at best) for students with special needs. This child is not stupid, and assuming he is will only frustrate him.
I think what I like most about this teacher (the one I spoke with today), though, is her assumption of competence. She expects Joey to do what she knows he can do, and she knows he can do this work and understand what is going on. Now we just have to figure out how to communicate effectively- both ways.
It would be one thing if the goal of testing was to understand what a child knows and understands, and what requires more work. When I give a test, this is what I am doing. Testing is a tool. But most testing in the schools is not geared to understanding what children know. It is geared to finding out what non-disabled children can recall within a certain format.
The Commonwealth of Virginia has implemented something called the Standards of Learning. I sure there are many excellent blogs on the subject, pros, cons, and everything in-between. I will say that having looked over the SOL goals with some care, there are pros and cons. The main pro is that kids have definite things they are learning throughout the year, following set "guidelines" so that I as a parent can determine what my child is learning in school in any given month, and can support those lessons at home. And they are good lessons, like learning about the senses and the world and the basics of academics. The con comes from a lack of flexibility, overwhelming children with material, and the measurments used to determine whether the children are learning the lessons. Testing my child with a verbal-heavy test where he has to carefully fill in little "bubbles" isn't going to help much, other than to tell me he's not very good at that kind of a test because of the auditory processing and the question processing. I already know he's autistic, thanks. What I want to know is does he know the material? And do we have an effective way for him to communicate that information and use that information? Another con is that the standards are so set and inflexible, Joey ends up having to do what to him is busy-work. He already knows his shapes, colors, numbers and letters. Yet here they are again. Is he not answering these questions about community helpers because he is bored? Or because he can't process the question format? Or because he genuinely has no clue what a fireman does? It is impossible to tell.
We do have some basic accommodations in his IEP, like one-on-one testing, visual prompts, and flex-testing (if he's clearly not going to test well, or gets tired, the teacher can stop testing for that day and try again later.) I think I'd feel better if more signing was used and permitting during testing, but I don't think the teachers are trained and know enough sign to do that. I just fear people who are not special ed folks- ie, most of the school teachers and admin- are going to dismiss him as stupid because of state-mandated tests which are poorly designed (at best) for students with special needs. This child is not stupid, and assuming he is will only frustrate him.
I think what I like most about this teacher (the one I spoke with today), though, is her assumption of competence. She expects Joey to do what she knows he can do, and she knows he can do this work and understand what is going on. Now we just have to figure out how to communicate effectively- both ways.
Wednesday, October 10, 2007
Midterm Whinefest
Ah, midterms are upon us. The Whine commences. I should have bought more cheese.
I won't go into details. Let's just say that there is nothing that gets me grumpier than students who want to make-up assignments they forgot to do, email me AFTER an assignment is due- by DAYS- to please can they turn it in now? students who suddenly want the midterm in a different format (I'm supposed to get those magic accomodation letters the first couple of weeks of school, or at least a couple weeks after they are granted, not the morning of the exam). Except one thing. Students who call/email/show up the morning after the exam is due wanting to make it up. Email is available 24 hours a day. If you have an emergency, why not drop me a line when you get home and say "Oops, I had an emergency?" instead of waiting until the assignment is over or... ?
I'm wrong. There is one more thing that makes me even grumpier than any of that. Students who get belligerent when I tell them "sorry you forgot to take this... but no." For some reason, students think nasty emails are going to soften my position on the matter. I have no clue why. If they think they have nothing to lose, they are quite wrong. I am happy to forward threatening and nasty email to my department chair and dean of students.
Taking college classes? Be polite and respectful to your professors. Making professors grumpy is a bad idea. Look at it this way: I went through college AND grad school. And guess what? When I forgot an assignment or slept through a test, I got a zero on it. Suck it up.
I won't go into details. Let's just say that there is nothing that gets me grumpier than students who want to make-up assignments they forgot to do, email me AFTER an assignment is due- by DAYS- to please can they turn it in now? students who suddenly want the midterm in a different format (I'm supposed to get those magic accomodation letters the first couple of weeks of school, or at least a couple weeks after they are granted, not the morning of the exam). Except one thing. Students who call/email/show up the morning after the exam is due wanting to make it up. Email is available 24 hours a day. If you have an emergency, why not drop me a line when you get home and say "Oops, I had an emergency?" instead of waiting until the assignment is over or... ?
I'm wrong. There is one more thing that makes me even grumpier than any of that. Students who get belligerent when I tell them "sorry you forgot to take this... but no." For some reason, students think nasty emails are going to soften my position on the matter. I have no clue why. If they think they have nothing to lose, they are quite wrong. I am happy to forward threatening and nasty email to my department chair and dean of students.
Taking college classes? Be polite and respectful to your professors. Making professors grumpy is a bad idea. Look at it this way: I went through college AND grad school. And guess what? When I forgot an assignment or slept through a test, I got a zero on it. Suck it up.
Tuesday, October 09, 2007
Names
You've got to get in on this meme.
WHAT ARE YOUR NAMES?
1. YOUR ROCK STAR NAME: (first pet & current car)
Hubert Magic Mitten Windstar. {I am so not a cool rock star.}
2.YOUR GANGSTA NAME: (fave ice cream flavor, favorite cookie)
Peppermint Stick Brown Sugar Scotch. {I didn’t fare much better as a gangsta.}
3. YOUR “FLY Guy/Girl” NAME: (first initial of first name, first three letters of your last name)
AGuy. {The joke continues…}
4. YOUR DETECTIVE NAME: (favorite color, favorite animal)
Green Owl. {That’s not so bad…}
5. YOUR SOAP OPERA NAME: (middle name, city where you were born)
Corinne Baltimore. {That works…good thing I kept my original middle name when I got married…}
6. YOUR STAR WARS NAME: (first 3 letters of your last name, first 2 letters of your first)
Guyam. {Could be worse. Now if only I could do mind tricks…}
7. SUPERHERO NAME: (”The” + 2nd favorite color, favorite drink)
The Blue Fresca. {No, that doesn’t work.}
8. NASCAR NAME: (the first names of your grandfathers)
Richard Leroy. Leroy Richard? {How about grandmothers? Marie Mary? Mary Marie?}
9. STRIPPER NAME: ( the name of your favorite perfume/cologne/scent, favorite candy)
Anais Toblerone. {That works.}
10.WITNESS PROTECTION NAME: (mother’s & father’s middle names )
Ann Robert. {That will do.}
11. TV WEATHER ANCHOR NAME: (Your 5th grade teacher’s last name, a major city that starts with the same letter)
Merritt Madrid. {I need more women’s names in my life.}
12. SPY NAME: (your favorite season/holiday, flower)
Autumn Dahlia. {I do usually still have dahlias in October. But not this year.}
13. CARTOON NAME: (favorite fruit, article of clothing you’re wearing right now + "ie" or "y")
Mango Hoodie. {OK, that sounds just weird.}
14. HIPPY NAME: (What you ate for breakfast, your favorite tree)
Yogurt Sugar Maple. {Groovy.}
15. YOUR ROCKSTAR TOUR NAME: (”The” + Your fave hobby/craft, fave weather element + “Tour”)
The Needlepoint Thunder Tour. {Why can’t I have a cool hobby, like pottery?}
Go ahead. See what you get!
WHAT ARE YOUR NAMES?
1. YOUR ROCK STAR NAME: (first pet & current car)
Hubert Magic Mitten Windstar. {I am so not a cool rock star.}
2.YOUR GANGSTA NAME: (fave ice cream flavor, favorite cookie)
Peppermint Stick Brown Sugar Scotch. {I didn’t fare much better as a gangsta.}
3. YOUR “FLY Guy/Girl” NAME: (first initial of first name, first three letters of your last name)
AGuy. {The joke continues…}
4. YOUR DETECTIVE NAME: (favorite color, favorite animal)
Green Owl. {That’s not so bad…}
5. YOUR SOAP OPERA NAME: (middle name, city where you were born)
Corinne Baltimore. {That works…good thing I kept my original middle name when I got married…}
6. YOUR STAR WARS NAME: (first 3 letters of your last name, first 2 letters of your first)
Guyam. {Could be worse. Now if only I could do mind tricks…}
7. SUPERHERO NAME: (”The” + 2nd favorite color, favorite drink)
The Blue Fresca. {No, that doesn’t work.}
8. NASCAR NAME: (the first names of your grandfathers)
Richard Leroy. Leroy Richard? {How about grandmothers? Marie Mary? Mary Marie?}
9. STRIPPER NAME: ( the name of your favorite perfume/cologne/scent, favorite candy)
Anais Toblerone. {That works.}
10.WITNESS PROTECTION NAME: (mother’s & father’s middle names )
Ann Robert. {That will do.}
11. TV WEATHER ANCHOR NAME: (Your 5th grade teacher’s last name, a major city that starts with the same letter)
Merritt Madrid. {I need more women’s names in my life.}
12. SPY NAME: (your favorite season/holiday, flower)
Autumn Dahlia. {I do usually still have dahlias in October. But not this year.}
13. CARTOON NAME: (favorite fruit, article of clothing you’re wearing right now + "ie" or "y")
Mango Hoodie. {OK, that sounds just weird.}
14. HIPPY NAME: (What you ate for breakfast, your favorite tree)
Yogurt Sugar Maple. {Groovy.}
15. YOUR ROCKSTAR TOUR NAME: (”The” + Your fave hobby/craft, fave weather element + “Tour”)
The Needlepoint Thunder Tour. {Why can’t I have a cool hobby, like pottery?}
Go ahead. See what you get!
Monday, October 08, 2007
Midterm Reports
In our schools, kids get a report card every nine weeks. However, at five weeks, they get a "midterm report." This report grades the kids as "Successful", "Progressing with Effort" or "Needs Improvement." I don't know if the report cards are going to use normal grades.
When I was in school, you were graded according to what teh teacher felt was your potential. I will grant you, this was subjective; but at least my parents had an idea of how well I was doing compared to no-one else but me.
Apparently, Joey is graded against his peers. The grades reflect how he is doing in comparison against other, non-disabled kindergardeners. He has two Ns: social studies and science.
We are working on figuring out what this means. Is he not understanding the work? Or is he being graded according to his ability to answer questions about the subject?
We're very concerned that he is being evaluated based on his ability to answer questions. For one, this would tell us exactly nothing. We already know he has a communication disorder. What does he know about social studies and science? Secondly, what accomodations are being made so that he can be evaluated appropriately against his peers? After all, you wouldn't fail a blind child in reading just because she can't see the book.
I tried to go in and ask (today was open-conference), but the teacher I needed to talk to wasn't there today. So I'll keep you posted.
When I was in school, you were graded according to what teh teacher felt was your potential. I will grant you, this was subjective; but at least my parents had an idea of how well I was doing compared to no-one else but me.
Apparently, Joey is graded against his peers. The grades reflect how he is doing in comparison against other, non-disabled kindergardeners. He has two Ns: social studies and science.
We are working on figuring out what this means. Is he not understanding the work? Or is he being graded according to his ability to answer questions about the subject?
We're very concerned that he is being evaluated based on his ability to answer questions. For one, this would tell us exactly nothing. We already know he has a communication disorder. What does he know about social studies and science? Secondly, what accomodations are being made so that he can be evaluated appropriately against his peers? After all, you wouldn't fail a blind child in reading just because she can't see the book.
I tried to go in and ask (today was open-conference), but the teacher I needed to talk to wasn't there today. So I'll keep you posted.
Sunday, October 07, 2007
THANK YOU!!!!!
It's official- the check is in the mail.
This past spring, I opened a little shop through Cafe Press, JoeyMom's Autism Awareness Bazaar. Today, it actually made money. I have a check for $28 coming my way!
What is $28 to us? With the insurance, it's a session of speech therapy for Joey, or most of an OT session. It is two weeks of school meals. It's 1/3 of my groceries for a week. It's a complete new outfit (minus shoes) for Joey or Andy. It's a month of Preschool Art classes for Andy, or two months of his Wee Time program. It's 3 hours of free time for me, because Andy's babysitter isn't a specially trained respite worker, so she only gets $9 an hour.
Thank you for supporting our family, all you wonderful people who bought t-shirts, buttons, mugs, magnets, bumper stickers, and journals, sporting my autism awareness designs. I promise it is money well-spent.
This past spring, I opened a little shop through Cafe Press, JoeyMom's Autism Awareness Bazaar. Today, it actually made money. I have a check for $28 coming my way!
What is $28 to us? With the insurance, it's a session of speech therapy for Joey, or most of an OT session. It is two weeks of school meals. It's 1/3 of my groceries for a week. It's a complete new outfit (minus shoes) for Joey or Andy. It's a month of Preschool Art classes for Andy, or two months of his Wee Time program. It's 3 hours of free time for me, because Andy's babysitter isn't a specially trained respite worker, so she only gets $9 an hour.
Thank you for supporting our family, all you wonderful people who bought t-shirts, buttons, mugs, magnets, bumper stickers, and journals, sporting my autism awareness designs. I promise it is money well-spent.
A New Washing Machine
Our washing machine died.
Normally, this would be a minor blip on the screen of life. HTe washer dies, you use the laundromat for a few weeks until the dent-and-scratch sale, you get a new washer. No big deal.
Except I am in a house with one child who still gets bouts of diarrhea, sometimes miss-aims the pee or forgets to wait until he's completely done, and has thrown-up in bed without warning twice in the last two weeks. That's just one of the two kids, remember.
I must have a washing machine.
Apparently the appliance business around here has really gotten hot. We got a washer from Lowe's. It was the cheapest place in town (WTF?) andwe ordered it yesterday (a Saturday) and they called to apologize for not being able to deliver it that day, was it OK to deliver it today (Sunday)?
And they delivered it. On a Sunday. I am washing clothes right now. Life is good.
Normally, this would be a minor blip on the screen of life. HTe washer dies, you use the laundromat for a few weeks until the dent-and-scratch sale, you get a new washer. No big deal.
Except I am in a house with one child who still gets bouts of diarrhea, sometimes miss-aims the pee or forgets to wait until he's completely done, and has thrown-up in bed without warning twice in the last two weeks. That's just one of the two kids, remember.
I must have a washing machine.
Apparently the appliance business around here has really gotten hot. We got a washer from Lowe's. It was the cheapest place in town (WTF?) andwe ordered it yesterday (a Saturday) and they called to apologize for not being able to deliver it that day, was it OK to deliver it today (Sunday)?
And they delivered it. On a Sunday. I am washing clothes right now. Life is good.
Friday, October 05, 2007
Medicalization
We are in the midst of the issue of medicalization and labeling, brought up nicely by VAB. Joey is not the child at issue here; there is no escaping the fact that Joey is autistic, and requires special supports to teach him to function and cope. Joey's communication issues and behavior clearly "mark" him in a crowd of non-autistic peers (though we sometimes have trouble with the special ed people forgetting that he is in need of service...) That the label of autism has been medicalized is another issue.
Then we have Andy. Andy is three years and four months old. He doesn't like loud noises or chaos, and displays "ritualisitic" behaviors when attempting to cope with noise. He flaps his hands when excited or agitated. He has stopped eating most foods. He prefers to keep his hands clean. Until a couple months ago, he would not jump or swing, or do things that required his feet to leave the floor. He hates to spin or go in circles, such as on a carnival ride.
Is Andy just a quirky three-year-old, taking his time an ddeveloping in his own way, or does he require a special label and special service?
Labels are a double-edged sword. Andy being labeled "sensory integration dysfunction" means we know he needs service. He needs speech therapy to make his language intelligible (and the therapy has been highly successful in this regard.) He gets OT for hyper-sensitivity issues (like the noise problem, and the vestibular issue). But how much does this child need to be medicalized beyond that?
It can be great fun to sit in the park and watch the children run about playing, and thinking about them with the labels that bounce around my house. Oh, look, that kid like to push the turnabout- heavy work for propioceptive input. That kid prefers to spin around on the swing, on his tummy- vestibular input. A child covers his ears when someone squeals. Another kid clearly prefers to play alone. One prefers the spring-riders. Another prefers slides. Some run, some climb, some like to be under the playset in the cozy spaces, others prefer to be out in the open. Some kids play in the dirt. OThers run their fingers through the pine needles. One kid squeaks and squawks to find a smudge upon their hand. Sensory issues. Motor issues. OCD issues. Communication issues.
And these are the "normal" kids.
There are so many characters out there today to remind us- and our kids- that "normal" is a relative term. Its a spectrum of experience, just like any other. Variance is normal. Being quirky, or even eccentric, is still OK, and has value. There is such a thing as "having character," and it is far more interesting than just being part of the common crowd. Gotta love "Runt of the Litter" from Chicken Little. How about Henry (or Daisy, for that matter) on Oswald? We could even bring up Dopey or Beaker. These characters aren't called "disabled." They are who they are, and fit into their worlds in their own ways. No medicalization required.
Then we have Andy. Andy is three years and four months old. He doesn't like loud noises or chaos, and displays "ritualisitic" behaviors when attempting to cope with noise. He flaps his hands when excited or agitated. He has stopped eating most foods. He prefers to keep his hands clean. Until a couple months ago, he would not jump or swing, or do things that required his feet to leave the floor. He hates to spin or go in circles, such as on a carnival ride.
Is Andy just a quirky three-year-old, taking his time an ddeveloping in his own way, or does he require a special label and special service?
Labels are a double-edged sword. Andy being labeled "sensory integration dysfunction" means we know he needs service. He needs speech therapy to make his language intelligible (and the therapy has been highly successful in this regard.) He gets OT for hyper-sensitivity issues (like the noise problem, and the vestibular issue). But how much does this child need to be medicalized beyond that?
It can be great fun to sit in the park and watch the children run about playing, and thinking about them with the labels that bounce around my house. Oh, look, that kid like to push the turnabout- heavy work for propioceptive input. That kid prefers to spin around on the swing, on his tummy- vestibular input. A child covers his ears when someone squeals. Another kid clearly prefers to play alone. One prefers the spring-riders. Another prefers slides. Some run, some climb, some like to be under the playset in the cozy spaces, others prefer to be out in the open. Some kids play in the dirt. OThers run their fingers through the pine needles. One kid squeaks and squawks to find a smudge upon their hand. Sensory issues. Motor issues. OCD issues. Communication issues.
And these are the "normal" kids.
There are so many characters out there today to remind us- and our kids- that "normal" is a relative term. Its a spectrum of experience, just like any other. Variance is normal. Being quirky, or even eccentric, is still OK, and has value. There is such a thing as "having character," and it is far more interesting than just being part of the common crowd. Gotta love "Runt of the Litter" from Chicken Little. How about Henry (or Daisy, for that matter) on Oswald? We could even bring up Dopey or Beaker. These characters aren't called "disabled." They are who they are, and fit into their worlds in their own ways. No medicalization required.
Food
Andy was recently well-known around here as The Pig. He ate everything, and plenty of it. If you had it, he wanted to try it.
Now he is surviving off of ketchup, juice, milk, hot dogs, gummi worms, chocolate, pickles, cottage cheese, mandarin oranges, and this morning, we re-added yogurt. Last night, he wouldn't eat the hot dog.
How do we go from eating everything to eating nothing in just a few weeks?
Welcome to the world of SID/SPD. Hopefully, like Joey, he'll pull out in a little while... I think it took Joey about two years for the food thing to switch back on. But I understand we were lucky.
Now he is surviving off of ketchup, juice, milk, hot dogs, gummi worms, chocolate, pickles, cottage cheese, mandarin oranges, and this morning, we re-added yogurt. Last night, he wouldn't eat the hot dog.
How do we go from eating everything to eating nothing in just a few weeks?
Welcome to the world of SID/SPD. Hopefully, like Joey, he'll pull out in a little while... I think it took Joey about two years for the food thing to switch back on. But I understand we were lucky.
Thursday, October 04, 2007
Changing the plan
I was supposed to have some time this fall. To be exact, about three hours, twice a week. I had plans for that time. I was going to make Halloween costumes. I was going to make Christma decorations. I was going to clean things, organize things, and drink a lot more chai with Christina.
Once again, we have not landed the plane in Italy. Andy is not in school. The only places that will take him are places I can't afford. Daycares will only do full-time slots, even if you don't ant a full-time slot. Preschools want teh kids "fully potty trained", meaning fully independant in the bathroom. They also apparently want kids to already have school social skills, like sharing, taking turns, and standing in lines or sitting in circles. So no school this year. I signed Andy up at the rec center, most of which starts in November now, and all is Mommy-and-me style. He'll be the oldest kid in most of it.
The few friends I have with "normal" kids are going out for coffee. They are comparing school experiences. They are showing off the crafts their kids make at school. I bet their houses are clean. I run into them here and there, and they tell me all about it. Some of them were even in school last year. They are learning their ABCs and their numbers and colors and how to play with playdoh and color pictures and use the scissors and glue. And moms are going shopping, and making crafts for the craft fair, and baking and cleaning and calling their friends and going to yoga classes and aerobics classes and pottery classes and knitting classes. I am definitely not in Italy.
And while they are going on, and clucking sympathetically when I say Andy is not in school anymore, I am thinking: Guess what I did Tuesday, instead of sending Andy to school? (Note: they never ask.)
I took Andy to the gym, where he played with other boys and girls (so what if most of them weren't his age? Not Andy). Then we went to the pumpkin patch and played with the chickens and llamas and horses and saw baby calves and picked pumpkins. Then we went to lunch at a resteraunt. Andy ordered his lunch and we talked about all the posters on the walls, and practiced using a fork to eat the ketchup (well, at least he ate something...) Then we rested at home a little until we had to go get Joey for speech therapy and OT. We got home tired, but we had FUN!!!
And today we went to the park- the kids were all younger again, but Andy didn't mind- and we played ball and collected acorns and Andy went down the slides. There was a spider there, and we talked about spiders and living things and how green and pretty he (she?) was. Then we had McDonald's for lunch, and Andy had speech. He made a spider. He's mastered his first goal (labials)! Now we're resting a little, before I pull out another art project- maybe we'll make a book about fall!
And there is the trade-off. I'll figure out how to make Joey's costume, and the house cleaning will wait for me (it always does). I'll call Christina. Maybe she can come over here one morning to have chai. I may not be in Italy- but Greece is nice, too.
Once again, we have not landed the plane in Italy. Andy is not in school. The only places that will take him are places I can't afford. Daycares will only do full-time slots, even if you don't ant a full-time slot. Preschools want teh kids "fully potty trained", meaning fully independant in the bathroom. They also apparently want kids to already have school social skills, like sharing, taking turns, and standing in lines or sitting in circles. So no school this year. I signed Andy up at the rec center, most of which starts in November now, and all is Mommy-and-me style. He'll be the oldest kid in most of it.
The few friends I have with "normal" kids are going out for coffee. They are comparing school experiences. They are showing off the crafts their kids make at school. I bet their houses are clean. I run into them here and there, and they tell me all about it. Some of them were even in school last year. They are learning their ABCs and their numbers and colors and how to play with playdoh and color pictures and use the scissors and glue. And moms are going shopping, and making crafts for the craft fair, and baking and cleaning and calling their friends and going to yoga classes and aerobics classes and pottery classes and knitting classes. I am definitely not in Italy.
And while they are going on, and clucking sympathetically when I say Andy is not in school anymore, I am thinking: Guess what I did Tuesday, instead of sending Andy to school? (Note: they never ask.)
I took Andy to the gym, where he played with other boys and girls (so what if most of them weren't his age? Not Andy). Then we went to the pumpkin patch and played with the chickens and llamas and horses and saw baby calves and picked pumpkins. Then we went to lunch at a resteraunt. Andy ordered his lunch and we talked about all the posters on the walls, and practiced using a fork to eat the ketchup (well, at least he ate something...) Then we rested at home a little until we had to go get Joey for speech therapy and OT. We got home tired, but we had FUN!!!
And today we went to the park- the kids were all younger again, but Andy didn't mind- and we played ball and collected acorns and Andy went down the slides. There was a spider there, and we talked about spiders and living things and how green and pretty he (she?) was. Then we had McDonald's for lunch, and Andy had speech. He made a spider. He's mastered his first goal (labials)! Now we're resting a little, before I pull out another art project- maybe we'll make a book about fall!
And there is the trade-off. I'll figure out how to make Joey's costume, and the house cleaning will wait for me (it always does). I'll call Christina. Maybe she can come over here one morning to have chai. I may not be in Italy- but Greece is nice, too.
Wednesday, October 03, 2007
Monday, October 01, 2007
Today is Mountain Day.
If you're a Smithie- today is Mountain Day.
For the rest of the world, today is the surprise day off. The president decides on a day, usually in October and before October Break, when classes are spontaneously cancelled, the library is closed, and everyone is go out an actually enjoy themselves in the New England fall. The day is announced without warning, as the bells begin to chime before 8 am (when I was there, they usually rang out about 7 am)- and that was that. No classes. No library. No computer lab. Instant Day Off.
My four glorious mountain days were all spent in the mountains around Northampton. There were several nice spots to just hike around, find a nice spot under the changing leaves, and sleep. One year my beau and I drove to Maine. I can still see the mountains alive with color and the big maple leaves drifting down around me. There is nothing like New England in the fall. Nothing at all.
We all need a Mountain Day. I'm not likely to get one, but we should all the same. Wake up and declare a National Holiday. Take the kids somewhere with apples and animals and pumpkins and cider, cool breezes and bright leaves and plenty of space to run. Someplace that sells candles and fruit and crafts and quilts. Somewhere the scent of cider and leaves blends with woodsmoke and maple syrup. Yes, indeed.
Happy Mountain Day.
Saturday, September 29, 2007
Sleepover
We had a lovely overnight visitor at our house this weekend: Will the turtle.
We had the traditional Turtle Sleepover. Grandma found Will in her driveway, and brought him over to our house for the sleepover. Andy has been SO happy, always wanting to rush out to the garden to check on him. Joey was fine with it, but not terribly excited. He liked to pick Will up, turn him upside-down, and hand him to me.
Will stayed in a nice box and had yummy turnip greens, tomatoes, and cheese for supper, a bowl of water for splashing and drinking, and plenty of leaves to hide under. We went for a long walk to gather the leaves. We got to pet Will and talk with Will.
This morning, Will was driven home to Grandma's house and released back into the woods.
Thank you, Will. Do come by for another sleepover soon!
Friday, September 28, 2007
Subtle Exclusion
What's the power of a label? Protection of law.
Sensory Integration Dysfunction/Sensory Processing Disorder is a strange animal. If one says "Down Syndrome" or "Autism" or "Cerebral Palsy" or any number of labels tossed about special ed and medical facilities today, there is an implication of disability already implied- whether the condition is disabiling for the person or not. There is an automatic search for accommodation. The local school district may have to be sued, but they are legally obligated to provide service. These are recognized disability labels. SID/SPD is not. A child who cannot sit still is considered a problem, not a child in need of accommodation because of sensory issues. A child who needs help pulling up underwear is considered stupid or unfit for school, not a child with potential motor issues or sensory issues that may need accommodation. There is no "25% delay" to pinpoint and document. You can't take "covers ears in large, noisy rooms" to a committee and get your child into ECSE.
At the same time, no other school or daycare will take that child, either.
Our interview at the Montessori lasted 15 minutes, maybe 20. Everything I actually saw them ask him to do- letter puzzles, sorting small objects, etc., he did it. We were very frank about Andy's strengths, and just as frank about his weaknesses, and what we needed for him: a positive, supportive environment with somebody who could occasionally step in and remind him to pull his underwear over his bottom. You know... a preschool. For a three-year-old. They're all the rage this year, honest. It was probably telling when we left and my Mom asked Andy, "Would you like to go to school here?" he replied, "no, thank you." But the excuse for not accepting him when they called today was also telling: "We cannot accommodate him in our program at this time."
So many schools talk the big talk. They had a whole classroom section about "children of the world." There were smiling children in traditional costumes, like an Eskimo child wearing a fur-lined hood, a Chinese child in yellow silk, and African child in bright fabric and beads, watching the classroom from their poster dutifully. This is "diversity."
They have no idea what the word even means.
Sensory Integration Dysfunction/Sensory Processing Disorder is a strange animal. If one says "Down Syndrome" or "Autism" or "Cerebral Palsy" or any number of labels tossed about special ed and medical facilities today, there is an implication of disability already implied- whether the condition is disabiling for the person or not. There is an automatic search for accommodation. The local school district may have to be sued, but they are legally obligated to provide service. These are recognized disability labels. SID/SPD is not. A child who cannot sit still is considered a problem, not a child in need of accommodation because of sensory issues. A child who needs help pulling up underwear is considered stupid or unfit for school, not a child with potential motor issues or sensory issues that may need accommodation. There is no "25% delay" to pinpoint and document. You can't take "covers ears in large, noisy rooms" to a committee and get your child into ECSE.
At the same time, no other school or daycare will take that child, either.
Our interview at the Montessori lasted 15 minutes, maybe 20. Everything I actually saw them ask him to do- letter puzzles, sorting small objects, etc., he did it. We were very frank about Andy's strengths, and just as frank about his weaknesses, and what we needed for him: a positive, supportive environment with somebody who could occasionally step in and remind him to pull his underwear over his bottom. You know... a preschool. For a three-year-old. They're all the rage this year, honest. It was probably telling when we left and my Mom asked Andy, "Would you like to go to school here?" he replied, "no, thank you." But the excuse for not accepting him when they called today was also telling: "We cannot accommodate him in our program at this time."
So many schools talk the big talk. They had a whole classroom section about "children of the world." There were smiling children in traditional costumes, like an Eskimo child wearing a fur-lined hood, a Chinese child in yellow silk, and African child in bright fabric and beads, watching the classroom from their poster dutifully. This is "diversity."
They have no idea what the word even means.
Wednesday, September 26, 2007
Monday, September 24, 2007
More Waxing II
What is with the stomach bugs around here? I just get Joey over one, and now everybody is sick! The boys (all three of them) are waxing from every possible angle. I have not succumbed. I'm determined. I shall not wax. I refuse. No waxing allowed.
So another day home from school for everybody. I had to cancel the schedule for the day. C'est la vie.
On the upside, the boys' sheets are very. very clean.
So another day home from school for everybody. I had to cancel the schedule for the day. C'est la vie.
On the upside, the boys' sheets are very. very clean.
Saturday, September 22, 2007
Fear
We have an interview with a new school on Thursday. It's a well-established Montessori school. I would really like Andy to go there, because the glimpse I had of the facility was really promising, it comes highly recommended from both parents and previous students (who are often the same people), and Montessori does emphasize skills and ideas I would like Andy to have. Self-discipline. Wonder. Interest in learning. Being able to read the map, rather than just know the route to specific destinations.
Andy is three years old. He does not currently possess these skills. We just left a school that seemed to assume kids possessed skills I thought were the goal of preschool- things like sharing, following instructions, self-care. A big worry is the idea that if we go with this school, we are obligated to the full tuition. In other words, if something goes wrong, we're out a lot of money and probably cant afford to try another school. What if the environment turns out to be over-stimulating, so that he can't focus? How common is it for kids to get so interested in new things that they forget the bathroom? I thought it was pretty common, but apparently not. What about the impact on his personality of spending so much of his life in waiting rooms, of having a brother with a disability? The impact of his own weaknesses in sensory integration and communication? What if he melts down? Will they throw him out? Do other kids sometimes melt down in school? What if he becomes aggressive with his frustration? Will they help, or just tell me to come get him? Are these "normal" problems to have?
Having Andy tossed from preschool (well, technically, I pulled him out, but he was clearly unwelcome) has been a real shock. He is so very ready, and yet he has issues. I thought all kids had issues. Now I'm not so sure. What if his issues are considered unacceptable?
Andy is three years old. He does not currently possess these skills. We just left a school that seemed to assume kids possessed skills I thought were the goal of preschool- things like sharing, following instructions, self-care. A big worry is the idea that if we go with this school, we are obligated to the full tuition. In other words, if something goes wrong, we're out a lot of money and probably cant afford to try another school. What if the environment turns out to be over-stimulating, so that he can't focus? How common is it for kids to get so interested in new things that they forget the bathroom? I thought it was pretty common, but apparently not. What about the impact on his personality of spending so much of his life in waiting rooms, of having a brother with a disability? The impact of his own weaknesses in sensory integration and communication? What if he melts down? Will they throw him out? Do other kids sometimes melt down in school? What if he becomes aggressive with his frustration? Will they help, or just tell me to come get him? Are these "normal" problems to have?
Having Andy tossed from preschool (well, technically, I pulled him out, but he was clearly unwelcome) has been a real shock. He is so very ready, and yet he has issues. I thought all kids had issues. Now I'm not so sure. What if his issues are considered unacceptable?
Friday, September 21, 2007
Blogging Meme
Abfh has put up a new meme, and hey, what's wrong with a meme now and again? So here it is:
1. Is there a regular time of day when you compose your posts?
Yes. 2 am is pretty good, but around 9 pm is very usual. It is the time between getting the boys in bed and when I start checking up on my online class discussion forums.
2. Do you prefer to write a certain number of posts per week (or per month)?
I write when I can. I like having something as daily as possible, because I like reading blogs that post almost daily.
3. Are you more likely to write a post when you're happy about the topic, or do you mainly blog when you feel like ranting?
I'm a ranter. Sometimes I rant about being happy.
4. Do you write from notes or an outline, or are your posts mostly spontaneous?
Spontaneous- though sometimes I've stewed a few hours/days/weeks before I get things into words other people can understand.
5. Do you try to maintain a central theme for your blog and avoid random topics that don't fit the theme?
Yes. I try to stick to life with Joey and Andy, and I'm usually Joey-heavy because so much of my own life is taken up with work to support and advocate for him. I think we just learned this week that Andy is about to eat up more time, because he's in an unusual position in life.
6. Are there any interesting rituals associated with your blogging?
No. They're all very boring.
1. Is there a regular time of day when you compose your posts?
Yes. 2 am is pretty good, but around 9 pm is very usual. It is the time between getting the boys in bed and when I start checking up on my online class discussion forums.
2. Do you prefer to write a certain number of posts per week (or per month)?
I write when I can. I like having something as daily as possible, because I like reading blogs that post almost daily.
3. Are you more likely to write a post when you're happy about the topic, or do you mainly blog when you feel like ranting?
I'm a ranter. Sometimes I rant about being happy.
4. Do you write from notes or an outline, or are your posts mostly spontaneous?
Spontaneous- though sometimes I've stewed a few hours/days/weeks before I get things into words other people can understand.
5. Do you try to maintain a central theme for your blog and avoid random topics that don't fit the theme?
Yes. I try to stick to life with Joey and Andy, and I'm usually Joey-heavy because so much of my own life is taken up with work to support and advocate for him. I think we just learned this week that Andy is about to eat up more time, because he's in an unusual position in life.
6. Are there any interesting rituals associated with your blogging?
No. They're all very boring.
Thursday, September 20, 2007
School shopping
it's official. I fired the school this morning.
I can't very well send my child to a school that had not one positive thing to say about him, could I? We're SO happy to not be in one of those with Joey this year. I was not expecting to have such a problem with Andy. What's up with normal preschool?
So now we are school shopping. I have found a couple of schools with slots available. They are both Montessori schools, which around here means they are pricey and want the whole tuition even if they kick you out. :P I did get a glimpse of the inside of one already, and it looks really lovely- bright, clean, lots of things to do and get into. The director was very nice. We have an interview on Thursday. Wish us luck.
In other fronts, Joey is ill. Tummy bug. Mommy is tired. Perpetual.
I can't very well send my child to a school that had not one positive thing to say about him, could I? We're SO happy to not be in one of those with Joey this year. I was not expecting to have such a problem with Andy. What's up with normal preschool?
So now we are school shopping. I have found a couple of schools with slots available. They are both Montessori schools, which around here means they are pricey and want the whole tuition even if they kick you out. :P I did get a glimpse of the inside of one already, and it looks really lovely- bright, clean, lots of things to do and get into. The director was very nice. We have an interview on Thursday. Wish us luck.
In other fronts, Joey is ill. Tummy bug. Mommy is tired. Perpetual.
Tuesday, September 18, 2007
The Snag in the Plan
Andy is on the verge of being tossed out of preschool.
Andy loves preschool. He has no trouble seperating from me. He's very interested in the activities. He loves having friends. He has some usual 3-year-old troubles of sharing and paying attention. He's eager to learn and to be at school.
So what is the problem? Anyone else who has dealt with a "normal" preschool probably guessed it- toileting.
Many boys do not fully toilet independantly until they are four years old. Preschools don't care. Normal preschools now expect three year old children to be able to communicate effectively when they need the bathroom even during busy and interesting activities, walk into a bathroom stall by themselves, pull down their own clothes, completely void, wipe themselves effectively, pull up all clothing themselves, walk out of the stall to the sink, wash their hands, and return to the teacher waiting in the doorway, all independently- no prompts. None.
This means a child can be developmentally appropriate, even gifted, and have no where to attend school. Here, unless you can demonstrate a child has a 25% delay in something, the child cannot get into the special ed program. At age 3, 25% is a serious delay. However, even within a normal toilet-training timeline, a child is denied a "regular" program, because children must be "fully toilet-trained" as defined above. Verbal prompting through the steps of toileting is not an option. Visual prompts are not an option. The person cannot walk in and help the child unless there is another adult also in the bathroom (state law), so if the child, say, has trouble pulling up their underwear, they are not "fully toilet trained." If they have trouble focusing on tasks or pulling themselves away from tasks independently (if they need the prompt "Time for the potty!"), they are "not fully toilet trained." You can count to ten, ID all your colors, and know three letters, but you need a prompt for the potty? Sucks to be you. Get out.
Now, had I known this was the definition when I enrolled him last spring, I would have spent more OT time and more home time on these skills, instead of letting him "take his own time." All this literature about not pressuring kids to toilet train? Throw it OUT THE WINDOW. If they can't go to preschool with their peers solely due to this one weak skill, then more focus needs to be placed there, because it seems to be the one and only weakness that precludes participation in preschool absolutely. You can't wait, because you can't hold the child into an extra year of preschool. You can't place a normal 5-year-old into the 4-year-old class. You can't just stick your 3-year-old with the twos. All of the other kids have two years of preschool, some of them three, and your kid has one, guess who gets left behind? Guess who doesn't have the socialization skills and experience? Classroom skills? Andyes, there are kids who show up to kindergarden with no preschool at all, for various reasons. I've seen what becomes of them. It isn't pretty. When all the other kids are in reading group, writing their names, and standing in line, your kid gets labeled real quick- and its not a label you want the kid going through school with.
Andy loves preschool. He has no trouble seperating from me. He's very interested in the activities. He loves having friends. He has some usual 3-year-old troubles of sharing and paying attention. He's eager to learn and to be at school.
So what is the problem? Anyone else who has dealt with a "normal" preschool probably guessed it- toileting.
Many boys do not fully toilet independantly until they are four years old. Preschools don't care. Normal preschools now expect three year old children to be able to communicate effectively when they need the bathroom even during busy and interesting activities, walk into a bathroom stall by themselves, pull down their own clothes, completely void, wipe themselves effectively, pull up all clothing themselves, walk out of the stall to the sink, wash their hands, and return to the teacher waiting in the doorway, all independently- no prompts. None.
This means a child can be developmentally appropriate, even gifted, and have no where to attend school. Here, unless you can demonstrate a child has a 25% delay in something, the child cannot get into the special ed program. At age 3, 25% is a serious delay. However, even within a normal toilet-training timeline, a child is denied a "regular" program, because children must be "fully toilet-trained" as defined above. Verbal prompting through the steps of toileting is not an option. Visual prompts are not an option. The person cannot walk in and help the child unless there is another adult also in the bathroom (state law), so if the child, say, has trouble pulling up their underwear, they are not "fully toilet trained." If they have trouble focusing on tasks or pulling themselves away from tasks independently (if they need the prompt "Time for the potty!"), they are "not fully toilet trained." You can count to ten, ID all your colors, and know three letters, but you need a prompt for the potty? Sucks to be you. Get out.
Now, had I known this was the definition when I enrolled him last spring, I would have spent more OT time and more home time on these skills, instead of letting him "take his own time." All this literature about not pressuring kids to toilet train? Throw it OUT THE WINDOW. If they can't go to preschool with their peers solely due to this one weak skill, then more focus needs to be placed there, because it seems to be the one and only weakness that precludes participation in preschool absolutely. You can't wait, because you can't hold the child into an extra year of preschool. You can't place a normal 5-year-old into the 4-year-old class. You can't just stick your 3-year-old with the twos. All of the other kids have two years of preschool, some of them three, and your kid has one, guess who gets left behind? Guess who doesn't have the socialization skills and experience? Classroom skills? Andyes, there are kids who show up to kindergarden with no preschool at all, for various reasons. I've seen what becomes of them. It isn't pretty. When all the other kids are in reading group, writing their names, and standing in line, your kid gets labeled real quick- and its not a label you want the kid going through school with.
Monday, September 17, 2007
Stay Tuned!
We had the Best Vacation Ever.
We got two good shots at the ocean, cool enough to not burn our feet on the sand, warm enough to really get in the water.
Joey rode every ride we'd let him on. Andy got to go fishing and win prizes.
The boys played skee ball and prize cranes in Marty's. They had taffy from Dolle's.
Allan and I got to have a walk to ourselves. We got to have fries from Thrasher's and popcorn from Fisher's.
We had crabs at Hooper's. We saw ponies at Assateague. We even tried a new resteraunt, Greenwood Farms, which was wonderful!
So stay tuned for the pics, the fun, the stories...
We got two good shots at the ocean, cool enough to not burn our feet on the sand, warm enough to really get in the water.
Joey rode every ride we'd let him on. Andy got to go fishing and win prizes.
The boys played skee ball and prize cranes in Marty's. They had taffy from Dolle's.
Allan and I got to have a walk to ourselves. We got to have fries from Thrasher's and popcorn from Fisher's.
We had crabs at Hooper's. We saw ponies at Assateague. We even tried a new resteraunt, Greenwood Farms, which was wonderful!
So stay tuned for the pics, the fun, the stories...
Thursday, September 13, 2007
Preparing for the beach
Swimsuits, check.
Suntan lotion, check.
Shorts, check.
Shirts, check.
Long pants and shirts, just in case, check.
Extra towels, check.
Toys, check.
Electronic toys, check.
DVD player, check.
Little Bear DVDs, check.
Oobi DVDs, just in case, check.
Toothbrushes, check.
Rotating toothbrushes, check.
Favorite stories, check.
Extra books in case we need extra stories, or are bored with the usual ones, check.
Sweatshirts in case it gets chilly, check.
Some extra shirts and shorts, just in case, check.
Extra underwear because we have one still in training, check.
Swim diapers, because we have one still in training, check.
Sunglasses, check.
Extra sunglasses for when the others get broken or lost, check.
Sun hat, check.
Roll of dimes for the claw machines at Marty's, check.
Are we ready?
Oops, I guess I'd better pack some clothes and stuff for me...
Suntan lotion, check.
Shorts, check.
Shirts, check.
Long pants and shirts, just in case, check.
Extra towels, check.
Toys, check.
Electronic toys, check.
DVD player, check.
Little Bear DVDs, check.
Oobi DVDs, just in case, check.
Toothbrushes, check.
Rotating toothbrushes, check.
Favorite stories, check.
Extra books in case we need extra stories, or are bored with the usual ones, check.
Sweatshirts in case it gets chilly, check.
Some extra shirts and shorts, just in case, check.
Extra underwear because we have one still in training, check.
Swim diapers, because we have one still in training, check.
Sunglasses, check.
Extra sunglasses for when the others get broken or lost, check.
Sun hat, check.
Roll of dimes for the claw machines at Marty's, check.
Are we ready?
Oops, I guess I'd better pack some clothes and stuff for me...
Tuesday, September 11, 2007
Define "Yellow"
It was Andy's first day of preschool! I'm finding the differences between this "regular" preschool and Joey's special ed school very... well, different. None of the parents talk to you when you take your kid in. When I picked him up, he hadn't gone to the potty because they aren't allowed to go in with him, even if he needs a little encouragement.
Still, he seemed very happy and excited with his morning. He made a little handprint project, and called his teacher by name. Exciting stuff! He made himself right at home. No crying, no clinging- and since he's been clingy all lat week, that was a bit of a surprise. He found himself some plastic bugs and settled right in.
They did send him home with homework. A preschooler. There are a lot of non-academic things to learn in the world.
It's also interesting to note what the school expects from parents. I know far less of what Andy is doing during the day. I got a note, but it didn't say much. Once a month, one parent has to send in play-doh of a certain color. They send home a recipe. i signed up for September- get it done. My color was yellow. The photo here shows you the results. The neon orange was following the recipe. The pumpkin yellow is using only a quarter of the dye the recipe calls for. You will note that neither batch is yellow. Then I ran out of cream of tartar. So instead of yellow, this month, they have orange.
After all, it came from my house.
Still, he seemed very happy and excited with his morning. He made a little handprint project, and called his teacher by name. Exciting stuff! He made himself right at home. No crying, no clinging- and since he's been clingy all lat week, that was a bit of a surprise. He found himself some plastic bugs and settled right in. They did send him home with homework. A preschooler. There are a lot of non-academic things to learn in the world.
It's also interesting to note what the school expects from parents. I know far less of what Andy is doing during the day. I got a note, but it didn't say much. Once a month, one parent has to send in play-doh of a certain color. They send home a recipe. i signed up for September- get it done. My color was yellow. The photo here shows you the results. The neon orange was following the recipe. The pumpkin yellow is using only a quarter of the dye the recipe calls for. You will note that neither batch is yellow. Then I ran out of cream of tartar. So instead of yellow, this month, they have orange.After all, it came from my house.
Monday, September 10, 2007
Dancing Queen
Next weekend, we're going to the beach. I can hardly wait.
This past weekend, we had a party for my aunt and uncle- they've been married 50 years! (I'm getting old!) The boys had a lot of fun. There was a big disco ball, throwing light all over the walls. Andy was overwhelmed. Joey was in heaven.
Going to a family event in my family can be something of an adventure. You can tell my family- they are the ones who all look alike. If you yell "Bud" or "Elmer", most of the men in the room will turn their heads. I am often teh tallest person there, because my brother doesn't go anymore. The ones that don't look like me or my cousins, I definitely don't know. The ones that do, I know about half of them.
The boys decided that "dancing" was the best part (besides the cake). This involved each boy taking Mommy's hand and using her as a pivot to spin with teh pretty dancing lights. Mommy ended up very, very dizzy.I didn't get to really talk to anyone; every attempt was thwarted by a small child trying to either get me to "dance" or hide under my shirt.
And so it goes.
This past weekend, we had a party for my aunt and uncle- they've been married 50 years! (I'm getting old!) The boys had a lot of fun. There was a big disco ball, throwing light all over the walls. Andy was overwhelmed. Joey was in heaven.
Going to a family event in my family can be something of an adventure. You can tell my family- they are the ones who all look alike. If you yell "Bud" or "Elmer", most of the men in the room will turn their heads. I am often teh tallest person there, because my brother doesn't go anymore. The ones that don't look like me or my cousins, I definitely don't know. The ones that do, I know about half of them.
The boys decided that "dancing" was the best part (besides the cake). This involved each boy taking Mommy's hand and using her as a pivot to spin with teh pretty dancing lights. Mommy ended up very, very dizzy.I didn't get to really talk to anyone; every attempt was thwarted by a small child trying to either get me to "dance" or hide under my shirt.
And so it goes.
Friday, September 07, 2007
Beautiful
With Joey in school, I have a lot more time to attend to Andy. This first week has been hard. I miss Joey. Andy misses Joey. We lost a cat. The schedule is all new. Andy doesn't start his own school until next week. We're all tired and sad and missing our Joey (he goes to school ALL DAY now...)
So when Andy said he wanted ahot dog for lunch yesterday, I decided it was a good idea to take him to Dairy Queen and get one. We also got a strawberry sundar (it technically came with my lunch, but I knew it was really for him. I prefer caramel.) When it came, he sighed happily, then said, "Oh! the red! It's BEAUTIFUL!"
"Beautiful" became the word of the day. Anything that he wanted and thought a good thing was "beautiful."
It was a beautiful day.
So when Andy said he wanted ahot dog for lunch yesterday, I decided it was a good idea to take him to Dairy Queen and get one. We also got a strawberry sundar (it technically came with my lunch, but I knew it was really for him. I prefer caramel.) When it came, he sighed happily, then said, "Oh! the red! It's BEAUTIFUL!"
"Beautiful" became the word of the day. Anything that he wanted and thought a good thing was "beautiful."
It was a beautiful day.
Thursday, September 06, 2007
In Memoriam: Marmie Cat
My mom lost her cat to cancer this week. Chelsea Marmalade Blanche DuBois was a good companion and friend to my mom for fourteen years. We miss her very much.
When Blanche was brought to my mom, she had already been a mom, and traveled across the US. Aunt Ginny (who, incidentally, also gave us Luna and Ellora) had saved her from an animal shelter with the promise that "Chelsea" would be an indoor cat. All of Blanche's kittens had already been adopted, and she was being threatened with euthanasia- so that nine life thing may hav some truth to it after all.
Aunt Ginny travels with her animals, so Blanche joined the travelling family. However, she soon proved unfit for such a life. She would escape and hide on roofs and in closets, and provided ample evidence of neurosis. She hated the other animals. It just wasn't working. Aunt Ginny knew my mom had a nice, quiet house. We had lost our former long-time pet, Hubert Magic Mitten ("Kit Kat", or more usually, "Cat") in the spring. He was 17, and had a series of strokes. So Aunt Ginny brought the slender, long-haired beauty to the country, and my mother, for Christmas. Merry Christmas, Mom!
Her long orange hair and status as a mother lead my mom to initially dub her "Marmie" (Marmalade for the orange, and marmie after Little Women). However, it soon became apparent that the cat was absolutely nutso. She would hide for days in mom's closet, without food or water. If you made eye contact too soon, she would hide somewhere else and emerger several more days later, emaciated and exhausted. Mom learned to locate her without making eye contact, and leaving water. Then she would hide in the basement for weeks. If you called her, she would only answer if she thought you could see her (even if you couldn't). Again, callingtoo soon meant several more days of hiding. This was no Marmie. This was Blanche DuBois- depending on the kindness of strangers!
But as the calm of my mother and her home settled on Blanche, and she calmed down. She hid less and less, and finally stopped such insanity. Instead, she preferred ot sleep near my mother's face, one paw upon her cheek. Even when Mom was ill, sleeping out on the couch instead of bed, she would come and see where Mom was, and sit with her. They talked. Marmie (Blanche and Marmie became interchangeable names for her, depending on her mood) would want to know who was on the phone, demand her breakfast, demand that Mom come to bed. Blanche or Marmie, she and my mom were companions through thick and thin.
Six days ago, Marmie was eating a full can of food at each meal, being her usual bossy self. Then she stopped eating. She was otherwise acting fine, but she was losing weight. Two days ago, as she started looking thin, Mom took her to the vet and they took x-rays. Yesterday, the vet sat us down and explained that all that white we see in the abdominal cavity and chest cavity? That's cancer. Non-operable cancer, and chemo would buy her maybe three months- and not happy months. She was starting to have trouble breathing. She was at least 16 years old. It was time.
We lost our Blanche at 10:22 am on Sept 5, 2007.
Thank you for being our friend, Marmie. We love you. We miss you. Blessed be.
Wednesday, September 05, 2007
Back to School
School is here. Joey was in a good mood after school yesterday, and even had some words left. He did fine at speech therapy. Apparently he had some trouble with the gym teacher, but then, gym teachers aren't generally trained to deal with autistic kids who are probably tired, hungry, and frustrated towards teh end of their first day of school. One thing about avoiding meltdowns with anychild is to know when they could occur and avoid those storm conditions. With autistic kids, it can be harder to know exactly what those conditions are. Echo-y noise on top of being tired and frustrated could be a perfect storm to avoid.
We also had more biting yesterday. Joey bit Andy early, and we went home; then again before bed. Allan talked to him a long time, and finally Joey said that he was afraid of dinosaurs, the dinosaurs bite. Had Andy been pretending to be a dinosaur and scared him? Or was he putting plastic dinosaurs in Joey's face? It could be either one. At least we have some headway into the problem- and now we have to convince him to use his words, not his teeth.
Monday, September 03, 2007
End of Summer
As we prepare for school to begin tomorrow, I would just a moment to say goodbye and thank-you to summer.
This summer, Joey learned to ask questions. He learned to take turns. He learned that being Little Bear is a lot of fun, especially if Brother can be Little Bear, too. He learned that he can communicate with his hands as well as his voice. He learned that mountains are big, chickens peck you if you try to pet them, pool parties are really cool, and you can see tigers and elephants at the zoo. He learned that he can float in the water, and Mommy looks silly jumping off a diving board. He learned that otters like to play. He learned to eat ice cream on a cone.
Andy learned to pee in the potty. He learned that sharing toys can be fun, too. He learned that dinosaurs are real, and they are BIG. He learned that marshmallows get sticky when they get hot. He learned that turkeys gobble, and peacocks are soft (but shy). He learned to speak clearly if you want others to understand you. He learned how to get lollipops out of his Momma. He learned fireworks are LOUD.
Thank you, summer, for helping my boys grow. Good bye, summer. We'll see you next year.
Saturday, September 01, 2007
New Couch
My beautiful, wonderful mommy bought us a new couch today. I can hardly wait for it to come! It's a lovely light green to go with my livingroom, the fabric is softly comfy while seeming durable, and the lines classic.
My oldcouch belonged to my grandparents. I am very upset about losing it. As a little girl, when we spent the night at Granny and Pop's with my folks, this couch is where I slept. It was extra-deep, so very comfy for a child, and even for a teenager. (When I visited without my folks, I slept in the upstairs bedroom- I'll blog about that some other time.) It sat int eh livingroom under a huge mirror. Many a special occasion was marked by checking to see if my Granny and/or Pop would approve of my clothes, my hair, my demeanor, before setting forth. The cushions were often my fort or my playhouse or my lion's den. My little fingers would brush lovingly over the fabric, alternating between the smooth silky bckground and soft velor foreground.
However, it was also very bouncy. Joey discovered this at a very tender age, and long before we owned a trampoline. Andy followed suit. The straps and frame are broken, the springs are sagging to the floor, the fabric wearing threadbare and thin. After all, the couch- and the fabric- is 40 years old.
May the new couch last as long, and be as loved.
My oldcouch belonged to my grandparents. I am very upset about losing it. As a little girl, when we spent the night at Granny and Pop's with my folks, this couch is where I slept. It was extra-deep, so very comfy for a child, and even for a teenager. (When I visited without my folks, I slept in the upstairs bedroom- I'll blog about that some other time.) It sat int eh livingroom under a huge mirror. Many a special occasion was marked by checking to see if my Granny and/or Pop would approve of my clothes, my hair, my demeanor, before setting forth. The cushions were often my fort or my playhouse or my lion's den. My little fingers would brush lovingly over the fabric, alternating between the smooth silky bckground and soft velor foreground.
However, it was also very bouncy. Joey discovered this at a very tender age, and long before we owned a trampoline. Andy followed suit. The straps and frame are broken, the springs are sagging to the floor, the fabric wearing threadbare and thin. After all, the couch- and the fabric- is 40 years old.
May the new couch last as long, and be as loved.
Book Quiz
You're Watership Down!
by Richard Adams
Though many think of you as a bit young, even childish, you're
actually incredibly deep and complex. You show people the need to rethink their
assumptions, and confront them on everything from how they think to where they
build their houses. You might be one of the greatest people of all time. You'd
be recognized as such if you weren't always talking about talking rabbits.
Take the Book Quiz
at the Blue Pyramid.
Thursday, August 30, 2007
Meet the Teacher(s)
We went to Open House this evening. Grandma and I took Joey and Andy out to dinner, then over to school to meet our new kindergarden crew. It was really exciting. We got a copy of Joey's schedule and met both of his teachers, made sure we dragged our supplies with us, and even got to meet one of the other sets of parents. The self-contained class is really small right now, which will be all the better- everythng can be tailored to our kids, and Joey is going to be a real wing-ding of a challenge. The one teacher noted they have never started out with a kid as smart as Joey- meaning as far along academically- and we are looking forward to reading groups already! Joey spent most of the evening writing on the dry-erase board- letters, words, even "Come to school", and math (12 + 12 = 24). Show-off.
Its kind of weird to be explaining to a teacher, "well, he already knows how to read, he writes all his letters and numbers, and he can add...academics isn't the problem." When she asked, "so what's the problem?" all we could really say is, "everything else." Fortunately, these two people have seen Joey. They understand what we mean.
The adventure beings on Tuesday.
Its kind of weird to be explaining to a teacher, "well, he already knows how to read, he writes all his letters and numbers, and he can add...academics isn't the problem." When she asked, "so what's the problem?" all we could really say is, "everything else." Fortunately, these two people have seen Joey. They understand what we mean.
The adventure beings on Tuesday.
Wednesday, August 29, 2007
School update
I have now spoken with school folk, and the word is Joey will indeed be split between two teachers. One is the self-contained kindergarden teacher, theother is the new autism teacher. The current plan is to pull him out of language arts, where kindergardeners are learning letter sounds and writing (which Joey can already do) and place him in teh autism class to learn language and social skills. Sounds like a plan to me.
Tuesday, August 28, 2007
How Weird Was Your Day?
This was one of those weird days that seem like two or three days packed into one. We started off at the gym, wher ethe guys got to play with their friends while Mom failed to lose any more weight (as she has failed to do for now eight weeks running). The lady who runs the kid section takes special care of Joey, mostly because she likes him, and she said he was all out-of-focus today. This was bad because we were out of milk, which is a disaster. So we went to the store anyway, and we manage to get milk, but my legs are now bruised from little boys kicking their feet while riding on those little bench attachment things, and they threw hissy fits the whole time. So we went home for lunch, and Grandma came by. She had an appointment with the surgeon this morning because the radiologist wanted her to get her gall bladder out, but the surgeon told her if she isn't having any symptoms, call him when she does. This is good news, and we celebrated by having lunch delivered instead of cooking it. Then I inflated our pool and let the guys splash around in it until the sky looked threatening, but it never rained. They spent the rest of the afternoon lounging in the livingroom with various amusements and watching Little Bear. I managed to get a chicken in the oven for dinner. Very surreal.
Joey starts back to school next week. I need to sort through his clothes, organize his room, get the huge box of stuff the school wants all packed up to send in, and buy them both lunchboxes. I keep forgetting they need lunch boxes. I still don't know how many classrooms I am buying supplies for. If they split him between two teachers, do I need to send supplies for both classes?
Orientation is Thursday. I'll ask.
Joey starts back to school next week. I need to sort through his clothes, organize his room, get the huge box of stuff the school wants all packed up to send in, and buy them both lunchboxes. I keep forgetting they need lunch boxes. I still don't know how many classrooms I am buying supplies for. If they split him between two teachers, do I need to send supplies for both classes?
Orientation is Thursday. I'll ask.
Being nice
Niksmom has kindly nominated for the "Nice Matters Award." This award is really cool, because you give it to people you think are nice and supportive:
This award is for those bloggers who are nice people; good
blog friends and those who inspire good feelings and inspiration. Also for those who are a positive influence on our blogging world.
Once you’ve been awarded please pass it on to 7 others who you feel are deserving of this award.
Yes, good feelings and inspiration. Well, that would be all the blogs I read. Which isn't really that many, but tagging all of them would also be unfair. Tag. You're Nice. (I can't be fair all of the time!)
If I had to pick to top seven people who "inspire good feelings and inspiration" in my life right this minute... hmm... I mean, beside Joey, Andy, Allan, and Mom, because that would take up four slots, so maybe I can just put "Family" in slot one. Now I can still pick on six other people.
My friend Christina is a great inspiration. She keeps on chuckin', and then calls me with her bright, cheery voice to shine some sunshine on my day. Gotta love that!
My friend Sue, whom I don't often blog about, is anther one of those tethers to reality and cheerfulness. She has an NT son who is just a dollface, and sometimes its nice to hear about some normality.
Maddy must be included on this list. Maddy was the first person to comment here, letting em know I wasn't all by myself after all. There are other places where "goldfish" is a food group.
Whenever I think about nice people, and what "nice" means, I think of Howard and Kimberlee. When my cat Puma was very very sick in the last stages of feline leukemia, she needed an emergency blood transfusion. They were the only people we knew who had healthy cats, and though we didn't really know them that well, we asked them to help us with one of their beloved babies. They never even hesitated, asked questions, nothing- they grabbed their young, healthy cat Pepin and came to the rescue. Their kindness gave us another week with our Puma, and I will never forget it. There are real, courageous, nice people in the world.
Another great inspiration is my friend St. Anne. Her little boy has been a great companion, classmate, and buddy for my Joey this summer, and she's just another epitomy of a nice person, with supportive comments and advice for everybody (especially me!). Thanks for the Diet Cokes on my rough afternoons.
I'd also like to mention Joey's first preschool teacher. Even when she moved off to another distrcit, she has stayed interested in Joey, and helped us learn how to advocate for him. Shes the kind of teacher I wish everyone had- interested in her students, willing to go the extra mile and do the extra research to make sure she is doing the best she can to help her kids and their parents. You can't ask for much nicer than that. She always has an encouraging word (and supportive indignation) when we're at wit's end. Thanks, Miss Angie.
Saturday, August 25, 2007
Yes, folks, he IS reading!
Our ABA therapist, Becca, came up from a decent session this morning and gave me an in-depth report about the fact that Joey is reading. Not on a sixth-grade level or anything, but definitely reading- three-letter words no problem, some longer ones. We think this is pretty darn cool. I was reading pretty good by his age, and so was my husband, but neither of us had any language issues.
This evening, I pulled out a new book for him to look at. It was about Cars, to catch his interest, but not one he had seen much of. I had read it to them once, but bedtime storytime is not an activity that usually including paying attention to teh mom reading a story, so I wasn't too concerned about him memorizing the thing from one reading.
I am not a teacher, and I know very little about how young children read or learn to read. I know there are two ways to read, sight reading (recognizing words on sight, rather than sounding them out) and phonetic reading (sounding out the words). In reading our new book together, Joey clearly has some words by sight (like "the" and "and" and "car"). Words he didn't know by sight, we worked on sounding out, and he tried sounding out. As far as I know, this is a normal way to read. What I found interesting was the attempts at sounding out. Joey is very familiar with letters and the sounds they make, However, he often made the sound for a similar letter, rather than the letter he was looking at. For example, looking at the word "slowly", he would try it as "slooty" or "stewly" or even "stowly". The inconsistancy of it, and the use of similar letters, was kind of odd to me.
But he got through! We read the whole book, and he was SO PROUD, and I was so proud of him! It was the coolest thing ever! When he really catches on to this, we'll have a another visual avenue of communication with Joey- and he'll have a new avenue for communicating with us! How cool is that?
This evening, I pulled out a new book for him to look at. It was about Cars, to catch his interest, but not one he had seen much of. I had read it to them once, but bedtime storytime is not an activity that usually including paying attention to teh mom reading a story, so I wasn't too concerned about him memorizing the thing from one reading.
I am not a teacher, and I know very little about how young children read or learn to read. I know there are two ways to read, sight reading (recognizing words on sight, rather than sounding them out) and phonetic reading (sounding out the words). In reading our new book together, Joey clearly has some words by sight (like "the" and "and" and "car"). Words he didn't know by sight, we worked on sounding out, and he tried sounding out. As far as I know, this is a normal way to read. What I found interesting was the attempts at sounding out. Joey is very familiar with letters and the sounds they make, However, he often made the sound for a similar letter, rather than the letter he was looking at. For example, looking at the word "slowly", he would try it as "slooty" or "stewly" or even "stowly". The inconsistancy of it, and the use of similar letters, was kind of odd to me.
But he got through! We read the whole book, and he was SO PROUD, and I was so proud of him! It was the coolest thing ever! When he really catches on to this, we'll have a another visual avenue of communication with Joey- and he'll have a new avenue for communicating with us! How cool is that?
Friday, August 24, 2007
Plotting
I am thinking of trying to have a camping adventure with my guys, hopefully before school starts. Oobi has a camping episode, and Little Bear goes camping with Father Bear, and one of our Signing Time videos mentions camping, so there has been some interest in tents and things.
The question is how to do it. Camping even with non-autistic young children requires planning. First- inside or really outisde? To have this adventure inside requires clearing floorspace for the tent, but the plus is controlling the temperature and immediate access to such things as bathrooms, comfort objects, and the television. Not exactly camping, is it.
What is the point of this adventure? Exposure to new things, discussing the night-time, learning about nature. Ideally, we'd go out to Grandma's and camp in the woods, with a real campfire, seeing if Joey could deal with roasting marshmallows. Ther would be owls and wood ducks and deer and wild turkeys, as well as rabbits, squirrels, and plenty of trees and bushes.We could wade inteh river and look for crawdads and mussels and minnows. However, what about Joey wandering? If he got really uncomfortable, would Grandma's house be enough of a comfort? Or would he wander into the trees? What if he heard something that interested him? How would I find him? What if the river was a draw?
An alternative plan would be our own back yard. The yard is fenced. i'd need to get a chain and lock for the gate. But we'd be in the town. I suppose that's OK for a first adventure. Backyard it is.
I actually have a tent. Amazon had them cheap for a while. We could use the BBQ as a firepit for marshmallows. It would be kinda Oobi-ish. Now, what activities to keep the attention of small children until they pass out?
telling stories isn't really advisable, as they don't hold attention. Joey's tenuous grasp of narrative, sequencing, and language means he has a very difficult time following stories. Maybe soem kind of craft would be good early on, then marshmallows, and see if we can entice them with songs.
How would they deal with discovering that we are actually sleeping outside all night? That the bedtime routine will be altered? Willthis lead to meltdown, or controllable excitement? Do I have enough ASL to keep Joey focused and able to understand? Should I try to dig out the Oobi episode and talk about this? How far ahead?
It's not really the questions that are out of the ordinary- it's the answers. But we have to prepare, just like everybody else.
The question is how to do it. Camping even with non-autistic young children requires planning. First- inside or really outisde? To have this adventure inside requires clearing floorspace for the tent, but the plus is controlling the temperature and immediate access to such things as bathrooms, comfort objects, and the television. Not exactly camping, is it.
What is the point of this adventure? Exposure to new things, discussing the night-time, learning about nature. Ideally, we'd go out to Grandma's and camp in the woods, with a real campfire, seeing if Joey could deal with roasting marshmallows. Ther would be owls and wood ducks and deer and wild turkeys, as well as rabbits, squirrels, and plenty of trees and bushes.We could wade inteh river and look for crawdads and mussels and minnows. However, what about Joey wandering? If he got really uncomfortable, would Grandma's house be enough of a comfort? Or would he wander into the trees? What if he heard something that interested him? How would I find him? What if the river was a draw?
An alternative plan would be our own back yard. The yard is fenced. i'd need to get a chain and lock for the gate. But we'd be in the town. I suppose that's OK for a first adventure. Backyard it is.
I actually have a tent. Amazon had them cheap for a while. We could use the BBQ as a firepit for marshmallows. It would be kinda Oobi-ish. Now, what activities to keep the attention of small children until they pass out?
telling stories isn't really advisable, as they don't hold attention. Joey's tenuous grasp of narrative, sequencing, and language means he has a very difficult time following stories. Maybe soem kind of craft would be good early on, then marshmallows, and see if we can entice them with songs.
How would they deal with discovering that we are actually sleeping outside all night? That the bedtime routine will be altered? Willthis lead to meltdown, or controllable excitement? Do I have enough ASL to keep Joey focused and able to understand? Should I try to dig out the Oobi episode and talk about this? How far ahead?
It's not really the questions that are out of the ordinary- it's the answers. But we have to prepare, just like everybody else.
Wednesday, August 22, 2007
More insanity
Our special ed director retired this summer. I could write a whole post about the pros and cons of this, but right now, I'm just hopping mad about a con. There is some confusion about how his job is going to be filled, which has resulted in the person in charge of HeadStart beleiving they are in charge of the building- the WHOLE building- that HeadStart shares with ECSE. They decided HeadStart needed a room on the first floor for their 3-year-olds, so they moved one of the ESCE classrooms upstairs- and THEN informed the ESCE teacher that this had ALREADY HAPPENED. On top of that, this person won't even let them move all of their stuff- they have decided, for example, that the para doesn't need a desk, so did not approve moving the desk.
What the... ?
My buddy Jack is still in that room. Why they think it appropriate to move a child who cannot walk on his own upstairs is beyond me. If the elevator isn't working- and its use is already strongly discouraged- how will they access the cafeteria? The gym? The playground? What if there is a fire? Normal 3-year-olds can safel use the stair. Jack can't. They would have to carry him- putting more people in danger.
Angry, angry, angry. What a way to start a day. :(
What the... ?
My buddy Jack is still in that room. Why they think it appropriate to move a child who cannot walk on his own upstairs is beyond me. If the elevator isn't working- and its use is already strongly discouraged- how will they access the cafeteria? The gym? The playground? What if there is a fire? Normal 3-year-olds can safel use the stair. Jack can't. They would have to carry him- putting more people in danger.
Angry, angry, angry. What a way to start a day. :(
Tuesday, August 21, 2007
Just a little crazy
We're about to go into a crazy period here in JoeyWorld and AndyLand. My apologies if this results in spotty blogging. There are only 24 hour in a day.
I start back to teaching this week. Two sections online. Next week, I have a live double section. I love teaching live courses. Online ones, not so good. Online students have no qualms sending nasty emails- after all, they never see you, so you're just the faceless Establishment. Why put on a respectful face?
Then the boys start school. Joey starts on the 4th. Andy starts on the 11th. Let's hear it for school! Shame its a game of Russian Roulette. And I always miss my Joey- now I'll be missing my Andy, too. My boys are getting all grown up!
And now my mom is being told she has to have her gall bladder out now, now, now. I had mine out right after Joey was born (I was still in the maternity ward when it went bad- they forget to tell you how prevalent it is for recently pregnant women to have gall stones), so I suspect it will be at least a week before she'll be able to do things like walk around the house by herself, much less make food and take her sugar numbers. She has her first meeting with the surgeon on Tuesday.
So if I seem a little battier than usual...
I start back to teaching this week. Two sections online. Next week, I have a live double section. I love teaching live courses. Online ones, not so good. Online students have no qualms sending nasty emails- after all, they never see you, so you're just the faceless Establishment. Why put on a respectful face?
Then the boys start school. Joey starts on the 4th. Andy starts on the 11th. Let's hear it for school! Shame its a game of Russian Roulette. And I always miss my Joey- now I'll be missing my Andy, too. My boys are getting all grown up!
And now my mom is being told she has to have her gall bladder out now, now, now. I had mine out right after Joey was born (I was still in the maternity ward when it went bad- they forget to tell you how prevalent it is for recently pregnant women to have gall stones), so I suspect it will be at least a week before she'll be able to do things like walk around the house by herself, much less make food and take her sugar numbers. She has her first meeting with the surgeon on Tuesday.
So if I seem a little battier than usual...
Sunday, August 19, 2007
I have returned!
I'm BAAAAAAAA-AAAAAACK!
I was thinking I was going to have more time to blog over the weekend. The hotel had access and everything. Silly me. But the time was not frittered. My husband figured out how to do video conferencing over the computer. I got to SEE and TALK to my boys each evening!!! How's that for Hero Husband? Go JoeyAndyDad!!!! Let's hear it for my Allan! ***CHEERS!!***
Unfortunately, my train was late and I didn't get to see the boys. I went in and smooched 'em anyway. How can one resist those sweet little sleepy heads?
We've gotten some red flags tossed up about school. We thought we had everything settled about kindergarden and his new teacher and stuff, and suddenly the messages we're getting is that the summer school teacher is going to have him and she "reminded" me that he needs to be registered. He's already registered, and I thought we were having the teacher I've been talking to already? Not good. We're really nervous. Not that the summer lady hasn't done OK, but she's not like the other teacher, and we were really excited about the other lady, really feeling comfortable and happy. Silly us.
We still don't know what "keem" is. It hasn't come up again.
But I'll keep you posted.
I was thinking I was going to have more time to blog over the weekend. The hotel had access and everything. Silly me. But the time was not frittered. My husband figured out how to do video conferencing over the computer. I got to SEE and TALK to my boys each evening!!! How's that for Hero Husband? Go JoeyAndyDad!!!! Let's hear it for my Allan! ***CHEERS!!***
Unfortunately, my train was late and I didn't get to see the boys. I went in and smooched 'em anyway. How can one resist those sweet little sleepy heads?
We've gotten some red flags tossed up about school. We thought we had everything settled about kindergarden and his new teacher and stuff, and suddenly the messages we're getting is that the summer school teacher is going to have him and she "reminded" me that he needs to be registered. He's already registered, and I thought we were having the teacher I've been talking to already? Not good. We're really nervous. Not that the summer lady hasn't done OK, but she's not like the other teacher, and we were really excited about the other lady, really feeling comfortable and happy. Silly us.
We still don't know what "keem" is. It hasn't come up again.
But I'll keep you posted.
Thursday, August 16, 2007
Prepping for a trip
I have to go to NJ this weekend for work. I have a great job. I get to work at home most of the time- but twice a year, I have to go to NJ. I always worry when I go away. Its not that Allan can't take care of the kids, or anything like that, but I know Joey gets off-kilter. Even more, I miss my guys.
I do try my best to do some recharging in NJ. The food is usually pretty good, and I don't have to cook it. ;) Sometimes I get a single room, which is much nicer, but I usualy have a room-mate, which can really suck. :P I'm hoping to get my syllabi together. We'll see.
Bu there will me no boys to squish. No little diaper-free butts to pat. No lollipops to fetch. No goodnight kisses.
I hate traveling.
I do try my best to do some recharging in NJ. The food is usually pretty good, and I don't have to cook it. ;) Sometimes I get a single room, which is much nicer, but I usualy have a room-mate, which can really suck. :P I'm hoping to get my syllabi together. We'll see.
Bu there will me no boys to squish. No little diaper-free butts to pat. No lollipops to fetch. No goodnight kisses.
I hate traveling.
Tuesday, August 14, 2007
Forays into the unknown
Every once in a while- usually when Joey is not feeling tiptop- we have a meltdown for which Joey knows the reason, and is trying to tell us, and we just cannot make out what the hell is going on. He is looking for a specific object, but the words he is using to label the object make no sense. The game of 20 questions trying to discover what the object might be is rarely useful, because he does not answer questions accurately. Let's take this evening for an example.
"Can I have my keem?"
I have no idea what a "keem" is. Twenty Questions begins. What is it? A keem. You may have it; go get it. I want my keem. Where is it? It's there (accompanied by pointing in random directions). OK, show me. I want my keem!
So now we get off our butt and start looking for what this object might be. He was playing with some matchbox cars and Cars is playing on the tv. Maybe the object is a car. Is it "The King?"
I find The King, but this is not the object, and is rejected.
What color is it? It's green. He shakes his hand to sign green. OK, I am looking for a green object. I find a green car he was playing with earlier. This is not the object. It is immediately rejected.
Does it have wheels? No. Ok, not a car. What else could "keem" be?
Joey is now spiraling into tears because I'm an idiot who doesn't know what a "keem" is.
How about "game"? He's been perseverating on a little electronic thing that does math. Does he want his game? No. Green car.
So it's a car. Without wheels. That does not compute.
And unfortunately, though the game is "Twenty Questions", we've actually maxxed out on the number of questions he'll attempt to answer on the subject without complete meltdown. Any more inquiries are either ignored or meet the same response: a wail and gnashing of child, screaming "My KEEEEEEEEEEEEM!"
I give up and send him up to his bath. I may never find out what a keem is. I hope he will sleep without it, but one can never tell. This may re-blow-up after bathtime, or it could be transitioned and done. Only time will tell.
"Can I have my keem?"
I have no idea what a "keem" is. Twenty Questions begins. What is it? A keem. You may have it; go get it. I want my keem. Where is it? It's there (accompanied by pointing in random directions). OK, show me. I want my keem!
So now we get off our butt and start looking for what this object might be. He was playing with some matchbox cars and Cars is playing on the tv. Maybe the object is a car. Is it "The King?"
I find The King, but this is not the object, and is rejected.
What color is it? It's green. He shakes his hand to sign green. OK, I am looking for a green object. I find a green car he was playing with earlier. This is not the object. It is immediately rejected.
Does it have wheels? No. Ok, not a car. What else could "keem" be?
Joey is now spiraling into tears because I'm an idiot who doesn't know what a "keem" is.
How about "game"? He's been perseverating on a little electronic thing that does math. Does he want his game? No. Green car.
So it's a car. Without wheels. That does not compute.
And unfortunately, though the game is "Twenty Questions", we've actually maxxed out on the number of questions he'll attempt to answer on the subject without complete meltdown. Any more inquiries are either ignored or meet the same response: a wail and gnashing of child, screaming "My KEEEEEEEEEEEEM!"
I give up and send him up to his bath. I may never find out what a keem is. I hope he will sleep without it, but one can never tell. This may re-blow-up after bathtime, or it could be transitioned and done. Only time will tell.
Sunday, August 12, 2007
12
Today we ran up to my aunt and uncle's for a dip in the pool- Joey's request. Last night, that sweet little guy asked if he could "go swimming, go to beach, go swim with the cousins" meaning my cousin's twins and a trip to my aunt and uncle's to swim in their pool. I called them immediately to ask to come, and they were all for it. Yay, the part of the family that gets it!
A good time was had by all.
Then we got the usual signal that it was time to go. Joey began to perseverate.
We had been there all afternoon. The little guy was tired. His brother was exhausted. They were having fun. My aunt has one of those wooden German calendars on her wall, and one of the little wooden peices is, of course, a number 12. This is Joey's favorite number.
I am not sure why 12 is the number of choice. I could theorize on the subject, discuss the patterning and the sequential allure of the number 1 next to the number 2 to create the number 12, or a whole gambit of other associations possible, many of which would seem completely random to most people, and incomprensible to anyone not intimate with autism generally and Joey specifically. Whatever the reason, perseverating the number 12 means bedtime. Tired. Done. When he starts going on abotu the number 12, it's time to check for tiredness, exhaustion, or (if in the middle of the day for no apparent reason) fever. This is one of those ways Joey communicates that is hard to explain to people who expect other people to simply state what they need, or use words and language in direct ways. These are the kinds of little signals we've always picked up on with Joey.
12. {I'm tired.} I was 12. Give me 12. Look, a 12. I am 12. Where's the 12? 12. 12.
Fortunately, this is the part of the family that gets it, because they raised the daughter of another cousin, who was special needs (epilepsy and probable FAS). So when I suddenly announced it was time to go, and hustled everyone out the door and to the car, no offense was, I believe, taken. I think the sudden change in demeanor was a cue for them, too.
He's right now 12-ing on Allan's recliner. We don't have the heart to move such a 12 boy.
A good time was had by all.
Then we got the usual signal that it was time to go. Joey began to perseverate.
We had been there all afternoon. The little guy was tired. His brother was exhausted. They were having fun. My aunt has one of those wooden German calendars on her wall, and one of the little wooden peices is, of course, a number 12. This is Joey's favorite number.
I am not sure why 12 is the number of choice. I could theorize on the subject, discuss the patterning and the sequential allure of the number 1 next to the number 2 to create the number 12, or a whole gambit of other associations possible, many of which would seem completely random to most people, and incomprensible to anyone not intimate with autism generally and Joey specifically. Whatever the reason, perseverating the number 12 means bedtime. Tired. Done. When he starts going on abotu the number 12, it's time to check for tiredness, exhaustion, or (if in the middle of the day for no apparent reason) fever. This is one of those ways Joey communicates that is hard to explain to people who expect other people to simply state what they need, or use words and language in direct ways. These are the kinds of little signals we've always picked up on with Joey.
12. {I'm tired.} I was 12. Give me 12. Look, a 12. I am 12. Where's the 12? 12. 12.
Fortunately, this is the part of the family that gets it, because they raised the daughter of another cousin, who was special needs (epilepsy and probable FAS). So when I suddenly announced it was time to go, and hustled everyone out the door and to the car, no offense was, I believe, taken. I think the sudden change in demeanor was a cue for them, too.
He's right now 12-ing on Allan's recliner. We don't have the heart to move such a 12 boy.
Saturday, August 11, 2007
Going to the restaurant
Joey was just a little talking bug today- jabber, jabber, jabber. Gotta love it. He ate three slices of pizza for Daddy. PIZZA. You know, with tomato sauce and cheese and bread and sausage, all together, mixed up and layered to be bitten through, not picked apart. PIZZA. Joey. I am still on the floor in search of my teeth.
I was working over at Mom's today, so I got this news via phone with husband, rather than witnessing the event myself. Our van is on the fritz, so mom had to shuttle me around today, so we took Joey to church for music. He sat there and listened like any sweet little darling, curled up on the pew next to Grandma. He tried to sing the songs today and everything.
He was doing so well, that when we returned home to find Andy had fallen asleep, we decided to just take Joey out to eat.
He was SO excited. He just learned the sign for "restaurant" so he was showing it off gleefully, while informing all and sundry, "I am going to the restaurant! I am being in the restaurant! I eat in the restaurant! I am going in the restaurant!" He got to order his food himself ("I want the french fries and the chicken!") and pick out his food from the salad bar (he wanted mashed potatoes, cottage cheese, and watermelon), and even got his ownself-serve ice cream for dessert. But most amazing of all, he tried new food! He ate Grandma's cabbage (with and without cheese), and baked potato!
Who is this child, and where did they take Joey?
Seriously, he had a grand time, and really seems to be turning a corner on food and oral sensitivities. But now he is complaining that the church music is too loud, and covering his ears.
I was working over at Mom's today, so I got this news via phone with husband, rather than witnessing the event myself. Our van is on the fritz, so mom had to shuttle me around today, so we took Joey to church for music. He sat there and listened like any sweet little darling, curled up on the pew next to Grandma. He tried to sing the songs today and everything.
He was doing so well, that when we returned home to find Andy had fallen asleep, we decided to just take Joey out to eat.
He was SO excited. He just learned the sign for "restaurant" so he was showing it off gleefully, while informing all and sundry, "I am going to the restaurant! I am being in the restaurant! I eat in the restaurant! I am going in the restaurant!" He got to order his food himself ("I want the french fries and the chicken!") and pick out his food from the salad bar (he wanted mashed potatoes, cottage cheese, and watermelon), and even got his ownself-serve ice cream for dessert. But most amazing of all, he tried new food! He ate Grandma's cabbage (with and without cheese), and baked potato!
Who is this child, and where did they take Joey?
Seriously, he had a grand time, and really seems to be turning a corner on food and oral sensitivities. But now he is complaining that the church music is too loud, and covering his ears.
Friday, August 10, 2007
The Dog Days
We have just entered The Last Week. Joey's summer programs all end a week from today. Then we have two weeks of basically nothing- an abyss- before school begins.
We're not the only family to sign up for eight weeks of speech camp this summer. Or summer school. While maintaining our regular therapies. And then add a social skills camp to these last two weeks. Andy has patiently sat in the therapists office from 1 o'clock on, sometimes to 6 o'clock... all summer long. He has also not been alone.
There is a little girl who has sat in the office most of the summer while her brother is in speech camp. Is she seven? Eight? Old enough to like to do cartwheels across the waiting room and spruce up her pretty little face with Hello Kitty lipgloss. There are two preteen girls who come less often, but armed with DVDs and drawing pads, also waiting for speech camp siblings. There are two little girls and their baby brother awaiting a child in OT, who like to play with the plastic dolls' house in the speech room. The baby likes to climb the stairs and look down at his Dad through the rails. He also happens to have Down's Syndrome. There are some other siblings that come less often, or who I have seen less of at any rate. One is only eleven days old.
Whenever I think its been a long summer, I think of these kids. It's been a long summer for them, too. They didn't go to day camp, or cheerleading camp, or sports camp, or any of the things other non-special-needs kids seem to be doing. They didn't get to do lots of enrichment programs, or spend lots of lazy days by the pool. They didn't go to the beach. They stayed mostly right here, supporting their brothers and sisters as best they could by letting mom or dad or grandma or grandpa drag them to the therapy office day after day, and thus allow their siblings to have their therapies.
Next summer (and yes, I fully expect to be doing this again next summer), I'll probably ask the therapists if they mind if we have a Sibling Camp. Something to offer these kids besides sitting in the waiting room doing... well, not much. It could be free. I've got enough art supplies laying around here to put something together. A sprinkler in the parking lot would be OK for a brief activity when it wasn't absolutely boiling. Singing new songs and maybe even playing some Signing Time or other activity-related DVDs wouldn't cost anything. It would even be easy enough to have stuff that kids could easily walk-in/walk-out from; stations or quickie crafts so that anyone can join in, or opt out, as appointments allow. Just something so these kids don't feel like they spent the summer sitting around a waiting room. Something to get them through these last dog days of the summer, before the Abyss.
We're not the only family to sign up for eight weeks of speech camp this summer. Or summer school. While maintaining our regular therapies. And then add a social skills camp to these last two weeks. Andy has patiently sat in the therapists office from 1 o'clock on, sometimes to 6 o'clock... all summer long. He has also not been alone.
There is a little girl who has sat in the office most of the summer while her brother is in speech camp. Is she seven? Eight? Old enough to like to do cartwheels across the waiting room and spruce up her pretty little face with Hello Kitty lipgloss. There are two preteen girls who come less often, but armed with DVDs and drawing pads, also waiting for speech camp siblings. There are two little girls and their baby brother awaiting a child in OT, who like to play with the plastic dolls' house in the speech room. The baby likes to climb the stairs and look down at his Dad through the rails. He also happens to have Down's Syndrome. There are some other siblings that come less often, or who I have seen less of at any rate. One is only eleven days old.
Whenever I think its been a long summer, I think of these kids. It's been a long summer for them, too. They didn't go to day camp, or cheerleading camp, or sports camp, or any of the things other non-special-needs kids seem to be doing. They didn't get to do lots of enrichment programs, or spend lots of lazy days by the pool. They didn't go to the beach. They stayed mostly right here, supporting their brothers and sisters as best they could by letting mom or dad or grandma or grandpa drag them to the therapy office day after day, and thus allow their siblings to have their therapies.
Next summer (and yes, I fully expect to be doing this again next summer), I'll probably ask the therapists if they mind if we have a Sibling Camp. Something to offer these kids besides sitting in the waiting room doing... well, not much. It could be free. I've got enough art supplies laying around here to put something together. A sprinkler in the parking lot would be OK for a brief activity when it wasn't absolutely boiling. Singing new songs and maybe even playing some Signing Time or other activity-related DVDs wouldn't cost anything. It would even be easy enough to have stuff that kids could easily walk-in/walk-out from; stations or quickie crafts so that anyone can join in, or opt out, as appointments allow. Just something so these kids don't feel like they spent the summer sitting around a waiting room. Something to get them through these last dog days of the summer, before the Abyss.
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