I just noticed that I forgot to follow-up about the Sunday School meeting. Since it feeds into our war against the OT, I thought I'd just let you all know what happened there.
We had our meeting, and really talked about some of the issues they were having with Joey. These folks are not special ed trained, and the teachers aren't even education trained- they're Sunday School teachers, and have been for a while. Autism is not something they usually deal with. To them, he needs to act like everybody else, or at least do what everyone else does. The director was very helpful, having been in teh Stafford schools and having at least some exposure to the challenges and accommodations of autistic children. She could translate. ;)
I let them know I would have something of an answer by the time Sunday rolled around again. So the next Sunday I walked in, and told them about teh gum, and brought his vibrator. Before I even got the pack of gum out of my pocket, the one teacher had a peice in his mouth, and the other was thanking me. I was shoo-ed away. I returned to find he had earned a lollipop like everyone else. They had someone put a hand on his shoulder during storytime, and had also given him a stuffed animal to hold, so that they had the vibrator in reserve. Bingo. Earned a lollipop.
Compare that to an OT that has fought tooth and nail against even trying the gum for almost four weeks now.
Wednesday, February 21, 2007
Reports from the Front
I keep telling myself this was all just a big misunderstanding, that this OT wasn't really saying Joey should have a chew toy instead of gum, this was all just a silly word-problem.
Nope. She's serious.
And so the big battle is scheduled for Feb 28: the IEP meeting.
I tried to get this settled before the IEP, but apparently she had better things to do and everyone else's kid was more important than mine, and she just couldn't fit me into her schedule. So instead of quietly settling the matter, we're going to settle it loud and clear, and in front of her colleagues. Yuck.
The discussion between her and my private OT has been terrifyingly illuminating. She really does think putting fingers to a child's throat is "more subtle" than giving them a peice of chewing gum. Really. She didn't understand the importance of sensory integration interventions to an autistic child. In fact, for a women outing herself as a professional OT and advertising her work with the new autism resource room- one of the reasons she couldn't meet- you'd think she'd have some inkling about the sensory integration issues of autistic children, and approparite, functional interventions and accommodations. Every time I think about her in there with other autistic children, I get more and more concerned. They need someone in there supporting them- especially an OT- not someone torturing them!
So Wednesday is the big day. Everybody, please hope hard.
Nope. She's serious.
And so the big battle is scheduled for Feb 28: the IEP meeting.
I tried to get this settled before the IEP, but apparently she had better things to do and everyone else's kid was more important than mine, and she just couldn't fit me into her schedule. So instead of quietly settling the matter, we're going to settle it loud and clear, and in front of her colleagues. Yuck.
The discussion between her and my private OT has been terrifyingly illuminating. She really does think putting fingers to a child's throat is "more subtle" than giving them a peice of chewing gum. Really. She didn't understand the importance of sensory integration interventions to an autistic child. In fact, for a women outing herself as a professional OT and advertising her work with the new autism resource room- one of the reasons she couldn't meet- you'd think she'd have some inkling about the sensory integration issues of autistic children, and approparite, functional interventions and accommodations. Every time I think about her in there with other autistic children, I get more and more concerned. They need someone in there supporting them- especially an OT- not someone torturing them!
So Wednesday is the big day. Everybody, please hope hard.
Friday, February 02, 2007
Declaration of War
My private OT and I have managed to put together a simple sensory diet for Joey. For those of you not familiar with sensory diet, this is a series of strategies to deal with Joey's sensory integration issues. Joey has been displaying some disruptive behaviors lately- clicking, scripting, etc. If you give him a peice of gum, it stops; he gets the oral sensory input he needs. Seems simple, yes?
Apparently not.
The note I got back from the school OT was that she finds it effective to put her fingers on his throat and tell him "stop."Will he swallow the gum? What will they tell the other children about the gum? And they don't allow gum in regular classrooms.
Hello?
I doubt this woman wants to run after my son all day with her fingers on his throat, so the intervention she is recommending is not functional. Swallowing gum is not fatal. What do they tell children about other people's needs- such as chocolate for a diabetic, or special lunches for children with allergies? And what do I care what they allow in "regular classrooms"? For one, he isn't in one, and for two, inclusion classrooms should have no toruble accomodating such a simple strategy! What the HELL???
So I called the teacher. That went OK. She seemed to at least understand I was trying to help- I hope. BUt to have an OT so completely ignorant of sensory integration issues and interventions... where is the support for his teacher in these strategies?
So I called the special ed supervisor. I am hoping he will help. If not, I will have to go to the director. Allan has HAD it with this OT- this is the THIRD run-in with this person. In fact, this blog was started as a way to deal with frustrations from this lady. We're through. If she were a private OT, she'd be fired.
Apparently not.
The note I got back from the school OT was that she finds it effective to put her fingers on his throat and tell him "stop."Will he swallow the gum? What will they tell the other children about the gum? And they don't allow gum in regular classrooms.
Hello?
I doubt this woman wants to run after my son all day with her fingers on his throat, so the intervention she is recommending is not functional. Swallowing gum is not fatal. What do they tell children about other people's needs- such as chocolate for a diabetic, or special lunches for children with allergies? And what do I care what they allow in "regular classrooms"? For one, he isn't in one, and for two, inclusion classrooms should have no toruble accomodating such a simple strategy! What the HELL???
So I called the teacher. That went OK. She seemed to at least understand I was trying to help- I hope. BUt to have an OT so completely ignorant of sensory integration issues and interventions... where is the support for his teacher in these strategies?
So I called the special ed supervisor. I am hoping he will help. If not, I will have to go to the director. Allan has HAD it with this OT- this is the THIRD run-in with this person. In fact, this blog was started as a way to deal with frustrations from this lady. We're through. If she were a private OT, she'd be fired.
Saturday, January 27, 2007
Commentary: Bumper Stickers
There was once a Peanuts cartoon that said, "A bumper sticker is not a philosophy." However, there are an awful lot of autism bumper stickers swirling around now. I thought I'd share some thoughts about them.
1. The Puzzle Ribbon. The Puzzle ribbon is starting to be problematic. Many autistic adults are asserting that they do not want to be a "puzzle to be solved." That seems to miss the point, but perhaps that's just my own interpretation of the puzzle peice motif. We are all puzzles. The Autistic Puzzle is multi-colored because of the idea of "spectrum." However, as most know, puzzles with peices that are so different can either be a peice of cake to put together- or terribly, terribly hard. Getting life to come together for an autistic person can be far more of a challenge than with a "neurotypical" person. It is also extremely recognizable, so I hope we keep it.
2. "This is a cat. It is not a defective dog. It is very happy being a cat." I like this idea, but it is a little off. The point is that an autistic person is not a defective neurotypical person. I'm good with that. However, we live in a world run by dogs, designed for dogs, and where the primary way of getting what one needs is by wagging your tail when you are happy, and growling when you are upset. If you wag when you are upset, and growl/purr when you are happy, you probably are not going to get any milk in this world. I like the idea of not needing to be "cured" or made into a dog, though.
3. "Autism: It's not like you think." Love it. Have one to put on my bumper as soon as spring arrives.
4. "If at first you don't succeed, perserverate." Although I understand the humor in this, I am not sure the giggle at one of real issues of autism is something I want spread around. This is only good for meetings with ASD people and parents. Ditto for "It's a Stimmy Day."
5. "I'm not a brat. I have autism!" Joey's original preschool teacher, Miss Angie, once noted about Joey's unusual behaviors: " It really doesn't matter why he is doing these things. IF a behavior is unacceptable, it;s unacceptable, and needs to be changed." I will return to the story of the Mom Afraid of the Mouse, where she's standing, screaming int eh kitchen, waving a knife around. The story was told on the blog I got it from to demonstrate how behaviors seen as "unacceptable" in autistic people are seen as "acceptable" with neurotypical people. However, I must say that I disagree. The mom screaming over a mouse in the kitchen is still unacceptable behavior. That's why we find it funny. Here is a normally acceptable human being acting in a strange and unacceptable way. She really needs to learn not to freak out when a mouse scampers over her floor.
On the other hand, I do get weary of people coming up to me in stores and telling me to discipline my kid, or give me dirty looks if he happens to squeal, or get excited, or perserverate. Its like asking a parent to tell their wheel-chair bound kid to just get up and walk already. I can't imagine being a parent of a child who really loses it in stores, and dealing with people while trying to deal with a real meltdown. Sheesh, people, mind your own business. Even parents of brats are probably doing the best they can.
6. "Yes, my son has autism. No, he's not like Rainman." I'd like to have a set od business-size cards that say this. It would save time.
7. "Always Unique Totally Interesting Sometimes Mysterious." I know some autistic adults don't like the "mysterious" part of this, but I think I'd like to wear this t-shirt without the first letters lined up. Its perfect.
8. "Fair is not everyone getting the same thing, or what they want. Fair is when each student gets what they need." I wish every single person who worked in education really understood this. Our school OT effectively denied us summer services last year by saying that the school system couldn't do more for Joey than for the normal kids. I'm cool with that. But I thought that teh point was the school was giving each kid a fair shot at being an independant, socially responsible human being. They don't all make it. So... why doesn't my kid get to have this opportunity?
9. "What? Is my autism showing?" See #4 and #5.
10. "I'm just like everyone else... only different." We should all have this on our bumpers.
11. "If 1 in 166 children in this country were being kidnapped, we;d have a national emergency. We do. Autism." Ok, this one kinda gets my craw. I don't like the idea of comparing Joey to a child who has been kidnapped. Now, I'll say that when we started, we were definitely "losing" Joey. On the other hand, autism is not being "kidnapped." Joey is Joey. He has autism. We can manage to teach him to get along in a non-autistic world, but he is who he is. However, I think the point of the emergency is very much pertinent. Kids who need to get along in the world need services, they need help, they need attention. Most of them are not getting it, and many are beign actively denied due to ignorance and inaction. It is shameful. If 1 in 166 kids were being born with cerebral palsy, you bet someone would be getting off their butt and making things move and shake.
12. "Welcome to Holland. Come on, I'll show you around." This is great for therapists and parents who know the ropes and have moved past the grieving and the shock and come to the realization that this isn't the end of the world. Just the end of the world as you thought it ought to have been.
13. "Autism is a difference, not a disease." Dont show this one to your insurance company.
14." My communication skills are fine. It's not my fault you don't speak my language." Excuse me? We're not trying to speak English while in Holland here. These kids need to be supported and communicate functionally. Discouraging services is not the answer.
15. "Stop trying to fix me. I'm not broken." Then you don't need a personal assistant. I understand this one should be filed under the "this is a cat" and other anti-cure slogans, but this one really rubs me wrong. Its one of those suggestions that these people do not need help and support, do not need therapy, do not need special education. I know it is probably intended to move away from looking for a pill or a shot or a diet to "cure" the autism, but the tone comes across really, really wrong to me. Joey is not currently able to function in a regular environment at an independent level. Therefore, I need to do something.
16. "The next person who says autism is like a trip to Holland gets a mouthful of wooden shoe." Excuse me, but whoever wote this did not read the peice. It is not about being autistic. It is about being a parent of a disabled child, when all your friends have normal kids. It's about sitting in a room full of moms talking about how they just had a sleepover with 15 kids at their house, when my kid hasn't yet made a friend. Its about parents telling you about their kids' first word when your kid is deaf, or their first step when your kid is confined to a wheelchair. It's about the playdates you aren't invited to, the schools your kid can't go to, the life events your kid may never have. It's also about the miracle of Joey's first time coming up the stairs from having ABA and calling me "Mommy." The joy of watching Joey touch a drum. The absolute shock of having him turn to me and say, "I like the music!" It's about moving beyond shock, anger, fear, disappointment, and grief, and living the life you have rather than the one you thought you ought to have had, or the one everyone else seems to be having. It's about supporting the child and accepting the child as s/he is, and not trying to get that child to be a person you thought s/he should have been. It's about coming to terms with what society deems "normal", and what you actually have, and realizing that you have a treasure, too.
So I hate this sticker. It just communicates to me people who are too wrapped up int themselves to understand that raising an autistic child (or any disabled child) is not like raising a "typical" one, and it can be frustrating, isolating, and frightening, and parents need some support and understanding, too. It looks to me like the reaction of a spoiled rotten brat to something that doesn't even pertain to them. It dismisses the sacrifices parents make to raise and care for their autistic children- often well into adulthood.
17. "My kid has autism, alright? Now get out of my way!" I don't get this one. Somehow, not understanding this makes me feel better. Obviously this is a problem I have not had to face.
18. "Spock was not Vulcan. He was autistic, with pointy ears." I always remember the beginning of the Star Trek movie where the re-generated Spock is regaining memories and the computer is testing him. He is answering questions at a frantic pace without breaking a sweat, when it asks him, "How do you feel?" He can't answer the question. His human mother has to explain to him that the computer knows he is half-human, and so has emotions, even though he has been trained in the Vulcan way. This is important. Don't just train your autistic children to respond to academic skills. They also need social skills, need to be able to understnad emotion, need to be able to connect to the world. Education professionals often forget this, since their screening paperwork doesn't account for it.
19. "We all have challeneges. What makes you 'special'"? Another one that should be on every bumper.
20. "Autism is a disorder, not a disease." I like this one because it concedes that autism is not normal, and requires services and support, while turning aside the "cure" thing. My child is not just "different." Joey is currently disabled. He cannot be cured, but he can be helped.
21. "Inclusion works when teachers believe all children can learn." Teaching is a tough job- when it is done right. Keeping track of all those learning styles and needs- wow! Unfortunately, most classrooms are not set up for inclusion. Either you get it the way the teacher hands it out today, or you're screwed.
22. "My kid was poisoed by mercury in vaccines, but everyone calls it autism." I'd like to make a sticker that reads, "My kid was NOT poisoned by vaccines. He's still autistic. Now what?"
23. "Oops. Wrong Planet." I giggle at this one, because it's another one I think I ought to be wearing myself.
24. "When life gives you lemons... you'd better not be talking about your kid that way." I am sure this is a reference to some essay on accepting being a parent of a disabled child, but I have no idea what essay. However, I definitely have to agree- my life may not be "as expected", but Joey ain't a lemon.
25. "I am not a puzzle, I am a person." We're all puzzles. We're all people, too.
1. The Puzzle Ribbon. The Puzzle ribbon is starting to be problematic. Many autistic adults are asserting that they do not want to be a "puzzle to be solved." That seems to miss the point, but perhaps that's just my own interpretation of the puzzle peice motif. We are all puzzles. The Autistic Puzzle is multi-colored because of the idea of "spectrum." However, as most know, puzzles with peices that are so different can either be a peice of cake to put together- or terribly, terribly hard. Getting life to come together for an autistic person can be far more of a challenge than with a "neurotypical" person. It is also extremely recognizable, so I hope we keep it.
2. "This is a cat. It is not a defective dog. It is very happy being a cat." I like this idea, but it is a little off. The point is that an autistic person is not a defective neurotypical person. I'm good with that. However, we live in a world run by dogs, designed for dogs, and where the primary way of getting what one needs is by wagging your tail when you are happy, and growling when you are upset. If you wag when you are upset, and growl/purr when you are happy, you probably are not going to get any milk in this world. I like the idea of not needing to be "cured" or made into a dog, though.
3. "Autism: It's not like you think." Love it. Have one to put on my bumper as soon as spring arrives.
4. "If at first you don't succeed, perserverate." Although I understand the humor in this, I am not sure the giggle at one of real issues of autism is something I want spread around. This is only good for meetings with ASD people and parents. Ditto for "It's a Stimmy Day."
5. "I'm not a brat. I have autism!" Joey's original preschool teacher, Miss Angie, once noted about Joey's unusual behaviors: " It really doesn't matter why he is doing these things. IF a behavior is unacceptable, it;s unacceptable, and needs to be changed." I will return to the story of the Mom Afraid of the Mouse, where she's standing, screaming int eh kitchen, waving a knife around. The story was told on the blog I got it from to demonstrate how behaviors seen as "unacceptable" in autistic people are seen as "acceptable" with neurotypical people. However, I must say that I disagree. The mom screaming over a mouse in the kitchen is still unacceptable behavior. That's why we find it funny. Here is a normally acceptable human being acting in a strange and unacceptable way. She really needs to learn not to freak out when a mouse scampers over her floor.
On the other hand, I do get weary of people coming up to me in stores and telling me to discipline my kid, or give me dirty looks if he happens to squeal, or get excited, or perserverate. Its like asking a parent to tell their wheel-chair bound kid to just get up and walk already. I can't imagine being a parent of a child who really loses it in stores, and dealing with people while trying to deal with a real meltdown. Sheesh, people, mind your own business. Even parents of brats are probably doing the best they can.
6. "Yes, my son has autism. No, he's not like Rainman." I'd like to have a set od business-size cards that say this. It would save time.
7. "Always Unique Totally Interesting Sometimes Mysterious." I know some autistic adults don't like the "mysterious" part of this, but I think I'd like to wear this t-shirt without the first letters lined up. Its perfect.
8. "Fair is not everyone getting the same thing, or what they want. Fair is when each student gets what they need." I wish every single person who worked in education really understood this. Our school OT effectively denied us summer services last year by saying that the school system couldn't do more for Joey than for the normal kids. I'm cool with that. But I thought that teh point was the school was giving each kid a fair shot at being an independant, socially responsible human being. They don't all make it. So... why doesn't my kid get to have this opportunity?
9. "What? Is my autism showing?" See #4 and #5.
10. "I'm just like everyone else... only different." We should all have this on our bumpers.
11. "If 1 in 166 children in this country were being kidnapped, we;d have a national emergency. We do. Autism." Ok, this one kinda gets my craw. I don't like the idea of comparing Joey to a child who has been kidnapped. Now, I'll say that when we started, we were definitely "losing" Joey. On the other hand, autism is not being "kidnapped." Joey is Joey. He has autism. We can manage to teach him to get along in a non-autistic world, but he is who he is. However, I think the point of the emergency is very much pertinent. Kids who need to get along in the world need services, they need help, they need attention. Most of them are not getting it, and many are beign actively denied due to ignorance and inaction. It is shameful. If 1 in 166 kids were being born with cerebral palsy, you bet someone would be getting off their butt and making things move and shake.
12. "Welcome to Holland. Come on, I'll show you around." This is great for therapists and parents who know the ropes and have moved past the grieving and the shock and come to the realization that this isn't the end of the world. Just the end of the world as you thought it ought to have been.
13. "Autism is a difference, not a disease." Dont show this one to your insurance company.
14." My communication skills are fine. It's not my fault you don't speak my language." Excuse me? We're not trying to speak English while in Holland here. These kids need to be supported and communicate functionally. Discouraging services is not the answer.
15. "Stop trying to fix me. I'm not broken." Then you don't need a personal assistant. I understand this one should be filed under the "this is a cat" and other anti-cure slogans, but this one really rubs me wrong. Its one of those suggestions that these people do not need help and support, do not need therapy, do not need special education. I know it is probably intended to move away from looking for a pill or a shot or a diet to "cure" the autism, but the tone comes across really, really wrong to me. Joey is not currently able to function in a regular environment at an independent level. Therefore, I need to do something.
16. "The next person who says autism is like a trip to Holland gets a mouthful of wooden shoe." Excuse me, but whoever wote this did not read the peice. It is not about being autistic. It is about being a parent of a disabled child, when all your friends have normal kids. It's about sitting in a room full of moms talking about how they just had a sleepover with 15 kids at their house, when my kid hasn't yet made a friend. Its about parents telling you about their kids' first word when your kid is deaf, or their first step when your kid is confined to a wheelchair. It's about the playdates you aren't invited to, the schools your kid can't go to, the life events your kid may never have. It's also about the miracle of Joey's first time coming up the stairs from having ABA and calling me "Mommy." The joy of watching Joey touch a drum. The absolute shock of having him turn to me and say, "I like the music!" It's about moving beyond shock, anger, fear, disappointment, and grief, and living the life you have rather than the one you thought you ought to have had, or the one everyone else seems to be having. It's about supporting the child and accepting the child as s/he is, and not trying to get that child to be a person you thought s/he should have been. It's about coming to terms with what society deems "normal", and what you actually have, and realizing that you have a treasure, too.
So I hate this sticker. It just communicates to me people who are too wrapped up int themselves to understand that raising an autistic child (or any disabled child) is not like raising a "typical" one, and it can be frustrating, isolating, and frightening, and parents need some support and understanding, too. It looks to me like the reaction of a spoiled rotten brat to something that doesn't even pertain to them. It dismisses the sacrifices parents make to raise and care for their autistic children- often well into adulthood.
17. "My kid has autism, alright? Now get out of my way!" I don't get this one. Somehow, not understanding this makes me feel better. Obviously this is a problem I have not had to face.
18. "Spock was not Vulcan. He was autistic, with pointy ears." I always remember the beginning of the Star Trek movie where the re-generated Spock is regaining memories and the computer is testing him. He is answering questions at a frantic pace without breaking a sweat, when it asks him, "How do you feel?" He can't answer the question. His human mother has to explain to him that the computer knows he is half-human, and so has emotions, even though he has been trained in the Vulcan way. This is important. Don't just train your autistic children to respond to academic skills. They also need social skills, need to be able to understnad emotion, need to be able to connect to the world. Education professionals often forget this, since their screening paperwork doesn't account for it.
19. "We all have challeneges. What makes you 'special'"? Another one that should be on every bumper.
20. "Autism is a disorder, not a disease." I like this one because it concedes that autism is not normal, and requires services and support, while turning aside the "cure" thing. My child is not just "different." Joey is currently disabled. He cannot be cured, but he can be helped.
21. "Inclusion works when teachers believe all children can learn." Teaching is a tough job- when it is done right. Keeping track of all those learning styles and needs- wow! Unfortunately, most classrooms are not set up for inclusion. Either you get it the way the teacher hands it out today, or you're screwed.
22. "My kid was poisoed by mercury in vaccines, but everyone calls it autism." I'd like to make a sticker that reads, "My kid was NOT poisoned by vaccines. He's still autistic. Now what?"
23. "Oops. Wrong Planet." I giggle at this one, because it's another one I think I ought to be wearing myself.
24. "When life gives you lemons... you'd better not be talking about your kid that way." I am sure this is a reference to some essay on accepting being a parent of a disabled child, but I have no idea what essay. However, I definitely have to agree- my life may not be "as expected", but Joey ain't a lemon.
25. "I am not a puzzle, I am a person." We're all puzzles. We're all people, too.
Playing with the band
Joey loves music. Mom got him some drumsticks, and he's been going crazy (in a good way). He seems to have an OK sense of beat and time. I took him over to the church this evening. They have a casual contemporary service on Saturday nights, with a little band. When I took him last week to be baptized (long story), he really loved the music. He danced in the aisles, strumming his tummy liek a guitar or pretending to drum, and impressed everyone when they stopped and he'd say "Very good!" Then the band leader started ending songs with "Amen!" so Joey started saying "Amen!" as soon as a song ended. Everyone thought that was incredibly cute. Well, its a church after all. What's cuter than a four-year-old enjoying being at church and joining into "Amen" at the end of a song?
Anyway, he loved it so much I took him tonight. We sat up in the front pew so he could get a good long look at the instruments, and one of the percussionists came over and started handing him instruments to play, like shakers and spoonsets. Joey was THRILLED. He did a really nice job, especially with the spoons. I haven't seen him that happy in ages!
So often when people interact with Joey, and start to get the clue that something is not-quite-right, we get a curious reaction- usually something akin to a dirty look, or a scowl, or a pushing-away that is really very hurtful. It was just nice to see people react to Joey in a way that appreciated who he is, and welcomed him. Nobody there wanted to try to change him, or ask him to be quiet, or stop him from being a four-year-old in love with music. Yes, that band has a new #1 fan.
Me.
Anyway, he loved it so much I took him tonight. We sat up in the front pew so he could get a good long look at the instruments, and one of the percussionists came over and started handing him instruments to play, like shakers and spoonsets. Joey was THRILLED. He did a really nice job, especially with the spoons. I haven't seen him that happy in ages!
So often when people interact with Joey, and start to get the clue that something is not-quite-right, we get a curious reaction- usually something akin to a dirty look, or a scowl, or a pushing-away that is really very hurtful. It was just nice to see people react to Joey in a way that appreciated who he is, and welcomed him. Nobody there wanted to try to change him, or ask him to be quiet, or stop him from being a four-year-old in love with music. Yes, that band has a new #1 fan.
Me.
Monday, January 22, 2007
Snow! Snow! Snow!
Well, we finally got some. The boys are thrilled. They also have discovered that mom doesn't need to be mother-henning them all the time, all the time- it can be fun to be outside in the snow, with no mom (especially if mom is baking cookies for when boys get too cold and wet to stay outside!) It was very strange to be in teh house by myself for a whole twenty minutes. I spent most it looking out the door making sure the guys were safe.
Sunday school is getting interesting. The lady who runs the preschool wants to put together a little plan for dealing with Joey. I tried sending in a letter- especially since the Sunday school teachers insist on shoo-ing me out the door- but in bad weeks (and we've benhaving a really bad week), tey need to actually READ that letter. :P I'm glad to have a meeting this Sunday, because then no one has to read, they'll be informed (with a witness).
Really, if Joey could just have an attendant, he could go anywhere and be in a regular class. No-one will do that, though- "he's in too good a shape."
Friday, January 19, 2007
I have added a link to the list, to an article called "Welome to Holland." It's been circulaing enough that some folks might find it trite. I noticed some autistic adults are upset by it, by I want to note that it is about being a PARENT of a disabled child, not actually BEING a disabled person (though I'm not sure why it wouldn't apply- it's about thinking life is going to be one way, and having it turn out another way- not better, or worse, but different than expected or intended).
Thursday, January 18, 2007
Reasons
We've been having a bit of a bad week. Nothing particular has happened, but Joey has been tracking, scripting, and otherwise showing us he is having trouble. It would be nice if there was one stress we could point to and fix, but I doubt its that simple. Back to school, new stuff at school, maybe a growth spurt, the unusual weather and weather swings, normal growing-up type stuff...
It reminds me of a story of a woman in the kitchen on the table, screaming. You enter the room, and she's screaming, heedless of all else, knife in hand, clearly irrational. What do you do?
Find the mouse, of course.
One thing I learned when Joey was a baby, he doesn't scream without a reason. He doesn't take a backslide with no reason. I just can't always determine the reason. It must be horribly frustratng for him, because it's frustrating for me! What would that poor lady on the table do if we didn't know she was afraid of mice?
So we're having a frustrating week. I know a lot of "adult austistic" sites that get all worked up about trying to stop things like tracking and scripting, but they really do get in Joey's way. If Andy started, say, playing videogames at all hours and not doign his homework, I wouldn't think twice about shutting off the xbox. If a typical child doodles on his test paper instead of answering the questions, we reprimand them. So why would I be berated for moving Joey away from tracking and scripting, and back to the task at hand?
It reminds me of a story of a woman in the kitchen on the table, screaming. You enter the room, and she's screaming, heedless of all else, knife in hand, clearly irrational. What do you do?
Find the mouse, of course.
One thing I learned when Joey was a baby, he doesn't scream without a reason. He doesn't take a backslide with no reason. I just can't always determine the reason. It must be horribly frustratng for him, because it's frustrating for me! What would that poor lady on the table do if we didn't know she was afraid of mice?
So we're having a frustrating week. I know a lot of "adult austistic" sites that get all worked up about trying to stop things like tracking and scripting, but they really do get in Joey's way. If Andy started, say, playing videogames at all hours and not doign his homework, I wouldn't think twice about shutting off the xbox. If a typical child doodles on his test paper instead of answering the questions, we reprimand them. So why would I be berated for moving Joey away from tracking and scripting, and back to the task at hand?
Sunday, January 07, 2007
Hoarding
Joey has come through the holidays pretty well, all things considered. He had a great time yesterday with the Perrygos, playing with his cousins. He was fascinated by the water and the docks- we'll try to take him in teh summer when he can go on the boat.
Andy has been more of a problem. He totally loses it in noise. When teh presents started being passed out and opened, he melted down. He;s also hoarding- toys, food, anything he can put his hands on. It's insane. Its like he's even hoarding us- if no=one is near, he calls. He won't sleep or nap without a huge struggle, calling us back again and again. Sittign with him doesn't help. His bed gets heaped with stuff, and he's lost in a sea of stuffed animals. I don't know what I am doing wrong that he feels so insecure, but we have to find a way to help him. We just have to.
Andy has been more of a problem. He totally loses it in noise. When teh presents started being passed out and opened, he melted down. He;s also hoarding- toys, food, anything he can put his hands on. It's insane. Its like he's even hoarding us- if no=one is near, he calls. He won't sleep or nap without a huge struggle, calling us back again and again. Sittign with him doesn't help. His bed gets heaped with stuff, and he's lost in a sea of stuffed animals. I don't know what I am doing wrong that he feels so insecure, but we have to find a way to help him. We just have to.
Wednesday, December 27, 2006
Christmas Has Come!
Well, we survived! Joey has actually one quite well this year with teh activities and festivities. Andy has had a harder time. We managed to get some professional photos taken- despite Andy's best efforts- but we didn't get them onto Santa's lap. Joey saw Santa t school, so that was good enough for this year. I also had some helpful, helpful boys to put up the Christmas tree. We just put on the plastic ornaments and the stuff we had them make this year. That way, i didn't have to worry about breakage (I'm not so much worried about the ornaments, as that it is hard to get these guys to not touch stuff, and I was afraid of cuts).
Santa came and left the guys TONS of stuff. So I thought I'd offer some toy reviews.
T.J. Bearytales is a hit with both guys. The bear catches interest even before it moves, the stories seem to be gentle and fairly simple without being simplistic. It takes 4 D batteries, and there is space in teh backpack for 4 extra cartridges (it comes pre-programmed with a story, no cartridge needed- so strage for up to 5 stories!) and I recommend getting some, because otherwise you're going to hear the same story over and over and over and over again. Great toy. I hope it holds up, I'll keep you all posted.
Hyper-Rides Snake River Raceway was a big hit. I wish it stayed together better, but Joey adores it and Andy will run and fetch the cars to have Joey run it. It was also inexpensive. If you need bang for your buck, this works very well, and was easy to assemble No batteries required.
Fisher-Price Spiral Speedway- another hit. This comes with batteries, and needs its own cars to work well, so keep track of them. Hotwheels cars don't fit well, they are too wide and heavy. However, the guys really love it, and Andy likes to try to hoard it.
MegaBlocks Wizard of Oz Playset- we weren't sure about this one, though I bought it because I thought it too funny. the guys like the music and flashing lights, but the music is not from the movie at all. Also, teh witch is blue, not green. However, the boys like it a lot.
MB Hungry Hungry Hippos. Mom bought this for the guys in some kind of special two-games-for-one-price deal from Hasbro. It is not the game I remember. Its small, only for two players, and the balls don't bounce around well. Not a hit.
Hi-ho Cherry-o is the hit it always is for preschoolers. Joey and I just played it for over an hour, so he practiced counting, taking turns, and following rules. Very fun. Much more fun than I remembered.
TMX Elmo. Well, I must admit, its a cute toy, The guys love it. Its a lot of fun. Why do people try to kill each other for this thing, or pay hundreds of dollars for it? $40 is about right, considering the Bearytales was a little more than that. However, I think $20 is about what these toys ought to be. They are cute. The boys like them, They are not the end-all be-all.
Megablocks truck carrier playset. This toy includes trucks that come apart into smaller "blocks". It would have been fun except for the 15 wire ties holding it together. It took my husband and I an hour just to get the toy un-packaged enough for hte boys to play with it.
So it was a fun Christmas morning. The guys are enjoying their new toys, while watching Little Bear and hearing new stories (mostly Little Bear as well). Merry Christmas!
Santa came and left the guys TONS of stuff. So I thought I'd offer some toy reviews.
T.J. Bearytales is a hit with both guys. The bear catches interest even before it moves, the stories seem to be gentle and fairly simple without being simplistic. It takes 4 D batteries, and there is space in teh backpack for 4 extra cartridges (it comes pre-programmed with a story, no cartridge needed- so strage for up to 5 stories!) and I recommend getting some, because otherwise you're going to hear the same story over and over and over and over again. Great toy. I hope it holds up, I'll keep you all posted.
Hyper-Rides Snake River Raceway was a big hit. I wish it stayed together better, but Joey adores it and Andy will run and fetch the cars to have Joey run it. It was also inexpensive. If you need bang for your buck, this works very well, and was easy to assemble No batteries required.
Fisher-Price Spiral Speedway- another hit. This comes with batteries, and needs its own cars to work well, so keep track of them. Hotwheels cars don't fit well, they are too wide and heavy. However, the guys really love it, and Andy likes to try to hoard it.
MegaBlocks Wizard of Oz Playset- we weren't sure about this one, though I bought it because I thought it too funny. the guys like the music and flashing lights, but the music is not from the movie at all. Also, teh witch is blue, not green. However, the boys like it a lot.
MB Hungry Hungry Hippos. Mom bought this for the guys in some kind of special two-games-for-one-price deal from Hasbro. It is not the game I remember. Its small, only for two players, and the balls don't bounce around well. Not a hit.
Hi-ho Cherry-o is the hit it always is for preschoolers. Joey and I just played it for over an hour, so he practiced counting, taking turns, and following rules. Very fun. Much more fun than I remembered.
TMX Elmo. Well, I must admit, its a cute toy, The guys love it. Its a lot of fun. Why do people try to kill each other for this thing, or pay hundreds of dollars for it? $40 is about right, considering the Bearytales was a little more than that. However, I think $20 is about what these toys ought to be. They are cute. The boys like them, They are not the end-all be-all.
Megablocks truck carrier playset. This toy includes trucks that come apart into smaller "blocks". It would have been fun except for the 15 wire ties holding it together. It took my husband and I an hour just to get the toy un-packaged enough for hte boys to play with it.
So it was a fun Christmas morning. The guys are enjoying their new toys, while watching Little Bear and hearing new stories (mostly Little Bear as well). Merry Christmas!
Tuesday, December 12, 2006
Prepping for Santa
Yes, it's that time again... time to prepare for the Great Red-Suited One. I've been reading The Night Before Christmas to the guys, trying to get them used to the idea. Andy seems interested, but he's more into the Christmas carols. Joey likes Santa, but I don't think he gets the story at all. Oh well.
I went over to the elementary school yesterday to check out the kindergarden. There is a classroom that is kind of halfway between the self-contained classroom and the full inclusion classroom. It is run by a special ed teacher, has a kind of aide (but not a paraprofessional), and has only 8 students in it. The inclusion class sometimes comes in for lessons, like social studies; and they join the inclusion room for "specials" like art and music. It seems like a good idea, but they are still doing things Joey can't do, like sit in large groups on the floor and pay attention to a book. I go see Joey's program tomorrow, so I'll get to talk to Kaila then. He needs to be able to participate independently in large group activities, and have some other "independence encouragement" going on.
Now if only I can get them all healthy for Christmas...
I went over to the elementary school yesterday to check out the kindergarden. There is a classroom that is kind of halfway between the self-contained classroom and the full inclusion classroom. It is run by a special ed teacher, has a kind of aide (but not a paraprofessional), and has only 8 students in it. The inclusion class sometimes comes in for lessons, like social studies; and they join the inclusion room for "specials" like art and music. It seems like a good idea, but they are still doing things Joey can't do, like sit in large groups on the floor and pay attention to a book. I go see Joey's program tomorrow, so I'll get to talk to Kaila then. He needs to be able to participate independently in large group activities, and have some other "independence encouragement" going on.
Now if only I can get them all healthy for Christmas...
Saturday, November 25, 2006
Commentary: 8 Myths of Julie Krasnow
Once again, I am here to rant about another Autism List that I see bouncing about a lot, and which I find problematic. Here it is:
Dispelling Myths of Autism
Indianapolis Star
Begin to help autistic children by dispelling myths
By Julie Krasnow
The word “autism” has become a more common term recently, due in large part
to the Autism Society of America reporting that autism now affects one in
166 children.
If you don’t know someone with autism, you probably will someday. April is National Autism Awareness Month. As the autism/behavior specialist for the Carmel Clay Schools, my job is to educate others about this disability. Without proper knowledge, many people afflicted with autism often are misunderstood.
I would like to share and resolve some misconceptions and myths to help raise awareness in our community.
Myth No. 1: Autism is caused by “refrigerator mothers.”
Many years ago, Dr. Bruno Bettelheim claimed that autism had a psychological causation: that the mothers of these children, intentionally or otherwise, did not love their children. The term “refrigerator mother” was born, referring to the fact that the mother was cold toward her child. Today we know that autism is a bioneurological disorder that affects the functioning of the brain. Some theories suggest that it may be genetic, viral or caused by chemical exposure.
Commentary:
This idea is still more common than I would like. However, I would also like to file under this kind of ignorance the people who walk up to me in stores and tell me to discipline my child (and Joey isn't too bad in store, he likes them), people who ask us to leave resteraunts, and people who seem to blame us for Joey's quirks by proclaiming us "bad parents" either overtly or covertly.
I also would like to point out that many autistic adults seem to have a similar view of parents, by ignoring the sacrifices made by parents in trying to help them become independent, socially accepted (or acceptable) adults. You may not agree with how your parents raised you- but that just makes you human. To discount the effort to care for an autistic child and to raise an autistic child, we stand accused of being selfish and uncaring. Just wait until you have kids- which you wouldn't, if we didn't put forth extraordinary effort to help you learn to form and maintain relationships.
Myth No. 2: Autistic children show no emotion.
A common misconception is that children with autism are unloving and do not have any emotional feelings. On the surface, this may seem to be the case because they don’t always express their emotions in a way that you and I recognize. But for those of us who know a child with autism, we are aware of the ways that they show love and affection.
Commentary: My doctor was shocked when we first came back with a diagnosis of autism. The reaction? "But he's such a happy, loving child!" Yes, he is. I'd like to keep him happy and loving, thanks. (Our doctor has been extremely supportive, and interested in learning from Joey's case, by the way- and we're all for that!)
Myth No. 3: Children just need a good spanking
We’ve all been out to a grocery store or running errands when we come across a child throwing a temper tantrum, including screaming, throwing and hitting. We may wonder why parents are letting their child do this without any discipline or reprimands. If this is a child with autism, he most likely has lost control because of sensory overload. The sounds and visual stimulation and the overwhelming crowds are just too much for this child to take in, which results in a meltdown. Parents are unrightfully blamed for not disciplining their children.
Commentary: Yes, and we're awful parents, so what's our problem? Returning to those people who come up to me in the store and tell me about my kid: who the hell are you?
At the same time, I would like to take a moment to mention the folks who come up to me in that same store and tell me what beautiful children I have, even though Andy turns his head away and Joey giggles and asks them something strange. Thank you. Its lovely to know we're giving someone else pleasure, and I hope you enjoy my children as they are.
Myth No. 4: You’re born with autism.
On average, autism is diagnosed at 44 months of age.
Commentary: Joey was born with autism. The time of diagnosis is not the moment you start being autistic. However, autism can be triggered. This note seems to say children are not born with autism; they are. However, there are also children who were neuro-typical, and then have autism triggered by an event- and not always a clear, overnight event.
Myth No. 5: Vaccines do not cause autism.
The jury is still out on this one. Although a recent Institute of Medicine report appears to refute an association between vaccines and autism, the major autism organizations all agree that more research needs to be conducted. A recent study suggests that children receiving vaccines containing the preservative thimerosal are many times more likely to develop autism than those who receive thimerosal-free vaccines.
Commetnary: Joey received thimerosal-free vaccines. He's still autistic. However, I cannot discount that vaccines can be triggers. Vaccines place the body under stress, and stress can trigger autism. However, mumps, measles, rubella, whooping cough, hepatitis, chicken pox, pneumonia, flu, diptheria, tetanus, etc. also put the body under stress, and can trigger autism. On top of that, they can kill you. I recommend vaccination, though we put off the MMR a bit to make sure Joey and Andy had strong immune systems to handle it. I think the MMR is usually 18 months, we waited until 24. Andy is fine. Joey was already not fine.
Myth No. 6: Dustin Hoffman’s character in “Rain Man” is typical of a person
with autism.
The character in “Rain Man” was a high-functioning person with autism and also was a savant. In reality, only 2 percent of those diagnosed exhibit such savant capabilities.
Commentary: If "Rain Man" is a high-functioning autistic person, then I can't really blame people who want to "cure" it. I would consider "Rain Man" to be a medium-functioning person, not a high-functioning person. His savant abilities were not typical. Unfortunately, his social skill and functioning level is pretty middle-of-the-road. He was verbal, but unable to live independently or function in society. With the current understanding of autism and therapies for helping these children learn, we are all hoping to have people with autism be able to be less disabled than Rain Man.
Myth No. 7: The increase in the rate of autism is due to better diagnosing.
Ten years ago, the rate of autism was 1 in 10,000 births. Today it is 1 in 166. This is a 5,000 percent increase in 10 years. If this astonishing increase is due to better diagnosing, where are the thousands of autistic adults who should have received a diagnosis 10, 20 or 30 years ago?
Commentary: There is better diagnosing. There is also better treatment. However, I have the same question. I know autistic adults. But I know far more autistic children. Where are the ASD adults? Where is even the rumor of them? In my neighborhood, there are 3 autistic kids that I know of. However, in my wide range of contacts, friends, acquaintences, etc., I have only one person I know has an ASD, and not even a whisper of anyone, a sibling, a cousin, an aunt, uncle, etc., with ASD, Einstein Syndrome, or other problems that could indicate ASD. Why?
So I don;t think it is all better diagnosing. There really is a problem here, and it would be nice to figure out why were are seeing such a dramatic increase in ASD people.
Myth No. 8: Autism is a rare disorder.
With 1 in 166 children being diagnosed with autism, it can no longer be called rare. We have an epidemic on our hands. Every 16 minutes, another child is diagnosed with autism. For all of us who have had the privilege of knowing, loving or working with a child with autism, we are able to see their abilities through the disability and appreciate the child within. I am pleased to report to the community that my Carmel Clay colleagues and I are working very hard to provide the best education we can for students who have been diagnosed with autism.
Commentary: Autism was rare. Now it is not. There is a .5% chance that your next baby will be autistic.
About 2.2% of children 0-2 are disabled.
The chances of infant mortality is 7 in 1000 births, or .07%.
The chances of a preterm baby is 1 in 8, or 12%.
The chances of a multiple birth is about 3.4%.
The chances of Down Syndrome is 1 in 733. That's a .013% chance.
If you would like more information, please e-mail jkrasnow@ccs.k12.in.us or
call (317) 846-3086, ext. 1247.
Dispelling Myths of Autism
Indianapolis Star
Begin to help autistic children by dispelling myths
By Julie Krasnow
The word “autism” has become a more common term recently, due in large part
to the Autism Society of America reporting that autism now affects one in
166 children.
If you don’t know someone with autism, you probably will someday. April is National Autism Awareness Month. As the autism/behavior specialist for the Carmel Clay Schools, my job is to educate others about this disability. Without proper knowledge, many people afflicted with autism often are misunderstood.
I would like to share and resolve some misconceptions and myths to help raise awareness in our community.
Myth No. 1: Autism is caused by “refrigerator mothers.”
Many years ago, Dr. Bruno Bettelheim claimed that autism had a psychological causation: that the mothers of these children, intentionally or otherwise, did not love their children. The term “refrigerator mother” was born, referring to the fact that the mother was cold toward her child. Today we know that autism is a bioneurological disorder that affects the functioning of the brain. Some theories suggest that it may be genetic, viral or caused by chemical exposure.
Commentary:
This idea is still more common than I would like. However, I would also like to file under this kind of ignorance the people who walk up to me in stores and tell me to discipline my child (and Joey isn't too bad in store, he likes them), people who ask us to leave resteraunts, and people who seem to blame us for Joey's quirks by proclaiming us "bad parents" either overtly or covertly.
I also would like to point out that many autistic adults seem to have a similar view of parents, by ignoring the sacrifices made by parents in trying to help them become independent, socially accepted (or acceptable) adults. You may not agree with how your parents raised you- but that just makes you human. To discount the effort to care for an autistic child and to raise an autistic child, we stand accused of being selfish and uncaring. Just wait until you have kids- which you wouldn't, if we didn't put forth extraordinary effort to help you learn to form and maintain relationships.
Myth No. 2: Autistic children show no emotion.
A common misconception is that children with autism are unloving and do not have any emotional feelings. On the surface, this may seem to be the case because they don’t always express their emotions in a way that you and I recognize. But for those of us who know a child with autism, we are aware of the ways that they show love and affection.
Commentary: My doctor was shocked when we first came back with a diagnosis of autism. The reaction? "But he's such a happy, loving child!" Yes, he is. I'd like to keep him happy and loving, thanks. (Our doctor has been extremely supportive, and interested in learning from Joey's case, by the way- and we're all for that!)
Myth No. 3: Children just need a good spanking
We’ve all been out to a grocery store or running errands when we come across a child throwing a temper tantrum, including screaming, throwing and hitting. We may wonder why parents are letting their child do this without any discipline or reprimands. If this is a child with autism, he most likely has lost control because of sensory overload. The sounds and visual stimulation and the overwhelming crowds are just too much for this child to take in, which results in a meltdown. Parents are unrightfully blamed for not disciplining their children.
Commentary: Yes, and we're awful parents, so what's our problem? Returning to those people who come up to me in the store and tell me about my kid: who the hell are you?
At the same time, I would like to take a moment to mention the folks who come up to me in that same store and tell me what beautiful children I have, even though Andy turns his head away and Joey giggles and asks them something strange. Thank you. Its lovely to know we're giving someone else pleasure, and I hope you enjoy my children as they are.
Myth No. 4: You’re born with autism.
On average, autism is diagnosed at 44 months of age.
Commentary: Joey was born with autism. The time of diagnosis is not the moment you start being autistic. However, autism can be triggered. This note seems to say children are not born with autism; they are. However, there are also children who were neuro-typical, and then have autism triggered by an event- and not always a clear, overnight event.
Myth No. 5: Vaccines do not cause autism.
The jury is still out on this one. Although a recent Institute of Medicine report appears to refute an association between vaccines and autism, the major autism organizations all agree that more research needs to be conducted. A recent study suggests that children receiving vaccines containing the preservative thimerosal are many times more likely to develop autism than those who receive thimerosal-free vaccines.
Commetnary: Joey received thimerosal-free vaccines. He's still autistic. However, I cannot discount that vaccines can be triggers. Vaccines place the body under stress, and stress can trigger autism. However, mumps, measles, rubella, whooping cough, hepatitis, chicken pox, pneumonia, flu, diptheria, tetanus, etc. also put the body under stress, and can trigger autism. On top of that, they can kill you. I recommend vaccination, though we put off the MMR a bit to make sure Joey and Andy had strong immune systems to handle it. I think the MMR is usually 18 months, we waited until 24. Andy is fine. Joey was already not fine.
Myth No. 6: Dustin Hoffman’s character in “Rain Man” is typical of a person
with autism.
The character in “Rain Man” was a high-functioning person with autism and also was a savant. In reality, only 2 percent of those diagnosed exhibit such savant capabilities.
Commentary: If "Rain Man" is a high-functioning autistic person, then I can't really blame people who want to "cure" it. I would consider "Rain Man" to be a medium-functioning person, not a high-functioning person. His savant abilities were not typical. Unfortunately, his social skill and functioning level is pretty middle-of-the-road. He was verbal, but unable to live independently or function in society. With the current understanding of autism and therapies for helping these children learn, we are all hoping to have people with autism be able to be less disabled than Rain Man.
Myth No. 7: The increase in the rate of autism is due to better diagnosing.
Ten years ago, the rate of autism was 1 in 10,000 births. Today it is 1 in 166. This is a 5,000 percent increase in 10 years. If this astonishing increase is due to better diagnosing, where are the thousands of autistic adults who should have received a diagnosis 10, 20 or 30 years ago?
Commentary: There is better diagnosing. There is also better treatment. However, I have the same question. I know autistic adults. But I know far more autistic children. Where are the ASD adults? Where is even the rumor of them? In my neighborhood, there are 3 autistic kids that I know of. However, in my wide range of contacts, friends, acquaintences, etc., I have only one person I know has an ASD, and not even a whisper of anyone, a sibling, a cousin, an aunt, uncle, etc., with ASD, Einstein Syndrome, or other problems that could indicate ASD. Why?
So I don;t think it is all better diagnosing. There really is a problem here, and it would be nice to figure out why were are seeing such a dramatic increase in ASD people.
Myth No. 8: Autism is a rare disorder.
With 1 in 166 children being diagnosed with autism, it can no longer be called rare. We have an epidemic on our hands. Every 16 minutes, another child is diagnosed with autism. For all of us who have had the privilege of knowing, loving or working with a child with autism, we are able to see their abilities through the disability and appreciate the child within. I am pleased to report to the community that my Carmel Clay colleagues and I are working very hard to provide the best education we can for students who have been diagnosed with autism.
Commentary: Autism was rare. Now it is not. There is a .5% chance that your next baby will be autistic.
About 2.2% of children 0-2 are disabled.
The chances of infant mortality is 7 in 1000 births, or .07%.
The chances of a preterm baby is 1 in 8, or 12%.
The chances of a multiple birth is about 3.4%.
The chances of Down Syndrome is 1 in 733. That's a .013% chance.
If you would like more information, please e-mail jkrasnow@ccs.k12.in.us or
call (317) 846-3086, ext. 1247.
"Cure"
There's a funny word that bounces around the autism community: cure.
Its a funny word, because people get very, very upset about it. There is a whole subculture of sites and groups, mostly of parents, who want a cure. They want their children to be cured of their autism.
Then there are the sites from people who are autistic. Guess what? They don't want to be cured.
At first, I thought this was just a semantics game. I am, in part, correct. When I talk about getting Joey services, helping him to communicate, helping him learn to relate to other people, and heloing him exercise dynamic intelligence (the ability to deal with spontaneous and changing situations and environments), I am targeting core deficiencies that make autism disabling. I do not want my son to be disabled. That is my goal. I know we may never reach it, but that is where I am going in managing the condition.
Even "managing the condition" ruffles feathers. However, when words like "cure", "managing", and "mainstreaming" become problematic, you are having more of a problem of semantics than anything else. I am trying to help Joey, so he can fully enjoy living and enjoy his talents. I am doing this for Andy, too. That is what parents do.
Then I come across the two extremes of the spectrum on this issue.
On are the parents who really do want to "cure" their kid. They want to have a pill or a shot or a diet or a therapy that will make their kid normal. This is based on the idea that autism is a disease, the kid is sick, and if we only knew the right thing to do, it would go away. I certainly understand this feeling. Many of the sites from autistic people seem to completely disregard the effort put forth by parents, the pain they endure, the realization that your child may be disabled forever and unable to fully enjoy life. That will put some of these people off-joint, but there it is. A blind person will never be able to see. They may be perfectly happy, and enjoy their world, and have a useful, independent, joyous life. But I know what a treasure sight is, and would still wish my blind kid could see, and do everything I could to try to share that treasure with them. That is the impulse of most parents I know.
However, there are those parents that simply want a normal kid, rather than the kid they have. I wouldn't have believed this, but I have seen it too often now. So few of the special ed parents get involved, or even try to deal. They toss the kid at teh school at first opportunity, and that's it. They don't want to even look at the child. It's heartbreaking to me. When I compare that attitude to my friend Christina, who has three severely disabled boys and just loves them to peices and does everything she can to help them enjoy living, I just wonder what people are thinking. Those boys bring joy to her life, and she enjoys them, and lets them be who they are, and helps them to enjoy the world around them. We can wish they were not disabled, that they could talk, that they could walk, that they could live healthy, independent lives; but we also love them for who they are. They are not these disabilities.
Joey is not his autism. Joey is Joey. Why he does what he does is only important in that it gives me clues on how to help him, how to teach him, how to communicate with him. It actually gives me information about how he is perceiving the world around him, so that I can help him make sense of the world-- exactly as I am helping Andy make sense of his world.
Which brings me to the other end of the spectrum, the autistic folks who get all fired up and angry about people wanting to cure autism. I can see this side of the coin, too. Who wants to be told all their life that they are doing stuff wrong, that they are less than what was expected, that they can't do, can't be, can't please? The problem here is that by their arguments, we should do nothing. They will vehemently deny this, note that people with autism need support throughout life, that services for autistic adults is woefully absent, and that they are not saying that we shouldn't help. However, they then go to contradict this apologetic. It is very hard to say you don't want to be pushed to act like a normal person, and then wonder why no one will give you any services. Services are intended to help you function in a world of people that are not autistic. I am esepcially offended by autistic adults who say things like "independence isn;'t all its cracked up to be, I do best in dependent situations." Hello. I'd like someone to help me with my self-care skills, too. I'd like a maid to clean my house, a cook to make my food, and someone to hold my hand while I go to the grocery store. However, being an adult means being able to do things for yourself, to be responsible. Being independent is part of being grown-up. My job as a parent is to help my child grow up. Independence is the goal. I understand not everyone with autism will get there, but to harangue parents for having that goal is utterly offensive. It's as offensive as parents who want to make their kids "normal." To say you wished you could stay in some "magical" non-verbal world is saying you wish you could remain a child forever.
Hint: No one is "normal." Its OK to be "quirky" and "eccentric". But it is also a good thing to be able to dress, feed, and bathe yourself, be able to hold a job, and to have friends.
I am not asking Joey ot be a neuro-typical person. I understand that there are parents who do that. I am asking that Joey learn to care for himself, learn to relate to other people, and be able to have that opportunity to share his gifts with the world. For this, he needs help, and more help than Andy needs right now. He needs speech therapy, he needs occupational therapy, he needs intensive training to teach him how to learn and how to relate. He needs to have a connection between himself and the world around him. Its OK to be processing the information differently, but he needs to be processing the information.
Which brings my morning rant around to a another problem I see across the spectrum of the autism community: there is more than one kind of autism. This seems to be blatantly ignored. I have listened to parents of children across the spectrum of ASD, and the picture has become painfully clear to me that there really are at least two types of autism. Some children are born with autism already in play. Joey is this type. Knowing what we know now, we can see that Joey was autistic even in the hospital, when he freaked out over a warm blanket, and could grab and flick the doctor's stethoscope. Yes, as a newborn. Then there are the kids where the autism is triggered. They run into a problem, and they go overnight from being a happy, neuro-typical kid to silence and frustration. The trigger can be any number of things. The MMR vaccine triggered one child. A severe bout of flu triggered another child. I knoew kids who were triggered from stress, from illness, from poisoning by metals or other toxins. It happens. In fact, Joey may have had his trigger right from the get-go, when he went into distress during delivery; perhaps all kids are triggered, and its just a question of when and how. Then again, there are the kids with unusual head growth, which may be more of the at-birth type. At any rate, there are kids who start from the get-go being autistic, and there are kids who are fine, and then become autistic. They all need help to be able to function in the world. We can't just leave them in that magical non-verbal world, because then they never learn not to wander into the street, to dress and care for themselves, to grow into the human community. And after all, we are all humans. As the Dalai Lama once noted, without the human community, one human alone cannot survive.
Its a funny word, because people get very, very upset about it. There is a whole subculture of sites and groups, mostly of parents, who want a cure. They want their children to be cured of their autism.
Then there are the sites from people who are autistic. Guess what? They don't want to be cured.
At first, I thought this was just a semantics game. I am, in part, correct. When I talk about getting Joey services, helping him to communicate, helping him learn to relate to other people, and heloing him exercise dynamic intelligence (the ability to deal with spontaneous and changing situations and environments), I am targeting core deficiencies that make autism disabling. I do not want my son to be disabled. That is my goal. I know we may never reach it, but that is where I am going in managing the condition.
Even "managing the condition" ruffles feathers. However, when words like "cure", "managing", and "mainstreaming" become problematic, you are having more of a problem of semantics than anything else. I am trying to help Joey, so he can fully enjoy living and enjoy his talents. I am doing this for Andy, too. That is what parents do.
Then I come across the two extremes of the spectrum on this issue.
On are the parents who really do want to "cure" their kid. They want to have a pill or a shot or a diet or a therapy that will make their kid normal. This is based on the idea that autism is a disease, the kid is sick, and if we only knew the right thing to do, it would go away. I certainly understand this feeling. Many of the sites from autistic people seem to completely disregard the effort put forth by parents, the pain they endure, the realization that your child may be disabled forever and unable to fully enjoy life. That will put some of these people off-joint, but there it is. A blind person will never be able to see. They may be perfectly happy, and enjoy their world, and have a useful, independent, joyous life. But I know what a treasure sight is, and would still wish my blind kid could see, and do everything I could to try to share that treasure with them. That is the impulse of most parents I know.
However, there are those parents that simply want a normal kid, rather than the kid they have. I wouldn't have believed this, but I have seen it too often now. So few of the special ed parents get involved, or even try to deal. They toss the kid at teh school at first opportunity, and that's it. They don't want to even look at the child. It's heartbreaking to me. When I compare that attitude to my friend Christina, who has three severely disabled boys and just loves them to peices and does everything she can to help them enjoy living, I just wonder what people are thinking. Those boys bring joy to her life, and she enjoys them, and lets them be who they are, and helps them to enjoy the world around them. We can wish they were not disabled, that they could talk, that they could walk, that they could live healthy, independent lives; but we also love them for who they are. They are not these disabilities.
Joey is not his autism. Joey is Joey. Why he does what he does is only important in that it gives me clues on how to help him, how to teach him, how to communicate with him. It actually gives me information about how he is perceiving the world around him, so that I can help him make sense of the world-- exactly as I am helping Andy make sense of his world.
Which brings me to the other end of the spectrum, the autistic folks who get all fired up and angry about people wanting to cure autism. I can see this side of the coin, too. Who wants to be told all their life that they are doing stuff wrong, that they are less than what was expected, that they can't do, can't be, can't please? The problem here is that by their arguments, we should do nothing. They will vehemently deny this, note that people with autism need support throughout life, that services for autistic adults is woefully absent, and that they are not saying that we shouldn't help. However, they then go to contradict this apologetic. It is very hard to say you don't want to be pushed to act like a normal person, and then wonder why no one will give you any services. Services are intended to help you function in a world of people that are not autistic. I am esepcially offended by autistic adults who say things like "independence isn;'t all its cracked up to be, I do best in dependent situations." Hello. I'd like someone to help me with my self-care skills, too. I'd like a maid to clean my house, a cook to make my food, and someone to hold my hand while I go to the grocery store. However, being an adult means being able to do things for yourself, to be responsible. Being independent is part of being grown-up. My job as a parent is to help my child grow up. Independence is the goal. I understand not everyone with autism will get there, but to harangue parents for having that goal is utterly offensive. It's as offensive as parents who want to make their kids "normal." To say you wished you could stay in some "magical" non-verbal world is saying you wish you could remain a child forever.
Hint: No one is "normal." Its OK to be "quirky" and "eccentric". But it is also a good thing to be able to dress, feed, and bathe yourself, be able to hold a job, and to have friends.
I am not asking Joey ot be a neuro-typical person. I understand that there are parents who do that. I am asking that Joey learn to care for himself, learn to relate to other people, and be able to have that opportunity to share his gifts with the world. For this, he needs help, and more help than Andy needs right now. He needs speech therapy, he needs occupational therapy, he needs intensive training to teach him how to learn and how to relate. He needs to have a connection between himself and the world around him. Its OK to be processing the information differently, but he needs to be processing the information.
Which brings my morning rant around to a another problem I see across the spectrum of the autism community: there is more than one kind of autism. This seems to be blatantly ignored. I have listened to parents of children across the spectrum of ASD, and the picture has become painfully clear to me that there really are at least two types of autism. Some children are born with autism already in play. Joey is this type. Knowing what we know now, we can see that Joey was autistic even in the hospital, when he freaked out over a warm blanket, and could grab and flick the doctor's stethoscope. Yes, as a newborn. Then there are the kids where the autism is triggered. They run into a problem, and they go overnight from being a happy, neuro-typical kid to silence and frustration. The trigger can be any number of things. The MMR vaccine triggered one child. A severe bout of flu triggered another child. I knoew kids who were triggered from stress, from illness, from poisoning by metals or other toxins. It happens. In fact, Joey may have had his trigger right from the get-go, when he went into distress during delivery; perhaps all kids are triggered, and its just a question of when and how. Then again, there are the kids with unusual head growth, which may be more of the at-birth type. At any rate, there are kids who start from the get-go being autistic, and there are kids who are fine, and then become autistic. They all need help to be able to function in the world. We can't just leave them in that magical non-verbal world, because then they never learn not to wander into the street, to dress and care for themselves, to grow into the human community. And after all, we are all humans. As the Dalai Lama once noted, without the human community, one human alone cannot survive.
Wednesday, November 22, 2006
Commentary: 10 things Your Autistic Child Wishes You Knew
I am working on this as series of posts in reation to some of the "lists" I have been seeing about autism and children with autism. Some of the lists are good. Some of them are not. I'm going to start with one that is well-intentioned and useful, but which obscures problems associated with autism and getting services for children with autism.
Part One: Ten Things Your Autistic Child Wishes You Knew
This is a list that was posted on an autism support board I was reading.
1. I am a child with autism. I am not "autistic". My autism is one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings, and many talents, or are you just fat (overweight), myopic (wear glasses), or klutzy?
Commentary: Actually, when providing services or trying to get services, you do describe yourself as fat/obese, myopic, or even clumsy. If I want services for diabetes, I am referred to as diabetic. The problem comes when everything related to my child is blamed on his autism. 'Normal' children(or more properly, 'neuro-typical') have sensory issues, intense interests, and communication problems. Normal is what you are. There is no such thing as a neuro-typical individual; the idea is an ideal, and we all have quirks. The autism is only a problem when it become debilitating, and then we need to disccus Joey as autstic, in order to get him some help for dealing with attributes related to his autism which do not allow him to function in the neuro-typical, non-autistic world- blocks to his independence and happiness.
2. My sensory perceptions are disordered. This means the ordinary sights, sounds, smells, tastes, and touches of everyday life that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you, but I am really just trying to defend myself. A "simple" trip to the grocery store may be hell for me. My hearing may be hyperacute. Dozens of people are talking at once. The loudspeaker booms today's special. Muzak whines from the sound system. Cash registers beep and cough. A coffee grinder is chugging away. The meat cutter screeches, babies wail, carts creak, the flourescent lighting hums. My brain can't filter all the input and I'm in overload! My sense of smell may be highly sensitive. The fish isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out usausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles in Aisle 3 with ammonia... I can't sort it out, I'm too nauseous!
Because I'm visually oriented, this may be my first sense to become overstimulated. The flourescent light is too bright. It makes the room pulsate and hurts my eyes. Sometimes the light bounces off everything and distorts what I'm seeing. The space seems to be constantly changing. There's glare from windows, moving fans on the ceiling, so many bodies in consttant motion, too many items for me to be able to focus, and I may compensate with tunnel vision. All this affects my vestibular sense, and now I can't even tell where my body is in space. I may stumble, bump into things, or simply lay down to try to regroup.
Commentary: This item is useful for people with no background or understanding of autism. However, trips to the store or into the outside world are not "hell" for all people with autism. The point is to highlight sensory issues that are possible. Joey loves going to the store (though lately the Walmart has been a bit overwhelming). However, he has vestibular issues. Ever walked down the stairs, miscounted, and thought there was one more step? remember that feeling of your foot suddenly meeting the floor, when you were expecting more time before the shock hit your foot? My child goes through life liek that, with every step.
I also know that Joey does not only tunnel-vision, but tunnel-hears. When there is just too much, he cannot deal, and cannot either see or hear you; or he cannot filter propoerrly, so is seeing and hearing things other than what you think he is hearing or seeing. Neuro-typical people do this as well. Ever be listening intently to music or watching something, and suddenly realize someone is trying to get your attention?
3. Please remember to distinguish between won't (I choose not to) and can't (I'm not able to). Receptive and expressive language are both difficult for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear. "!!%#@%*^, Billy. (*&)^^$%$" Instead, come speak directly to me in plain words. "Please put your book in your desk. It's time to go to lunch." This tells me what you want me to do, and what is going to happen next. Now it's much easier for me to comply.
4. I am a concrete thinker. I interpret language literally. It's very confusing for me when you say "Hold your horses cowboy!" when what you really mean is "Please Stop running." Don't tell me something is a "piece of cake" when there's no dessert in sight and what you really mean is"This will be easy for you to do". When you say "It's pouring cats and dogs", I see pets coming out of a pitcher. Please just tell me "It's raining very hard". Idiom, puns, nuance, double entendre, and sarcasm are lost on me.
Commentary on 3 and together: Problem? In dealing with the neuro-typical world, these children need to learn about idioms and complex instruction and speech pattern. You cannot get a regular job and expect everyone around you to accommodate a need for plain English. If the goal is to help these people be independent, we need more services for speech and language. However, no one wants to provide them. The schools provide minimal service only if you have a severe (25% or greater) delay in speech and language skills. Insurance often does not cover speech therapy, as the service is viewed as educational. You get caught in a catch-22 of semantics!
5. Be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened, or confused, but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation, or other signs that something's wrong.
There's a flip side to this: I may sound like a little professor or a movie star, rattling off words or whole scripts well beyond my developmental age. These are messages that I've memorized from the world around me to compensate for my language deficits, because I know I'm expected to respond when spoken to. They may come from books, television, or speech of other people. It's called echolalia. I don't necessarily understand the context or terminology I'm using, I just know that it gets me off the hook for coming up with a reply.
Commentary: this is just more emphasis on the need for proper, appropriate, adequate speech and language instruction and services. To be able to function, an individual needs to handle complex and abstract concepts and thought. We need to do more work on how to teach these skills, just as we teach them how to learn other concepts and skills.
6. Because language is so difficult for me, I am very visually oriented. Show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of patient repetition helps me to learn. A visual schedule is extremely helpful as I move through my day. Like your day planner, it relieves me of the stress of having to remember what comes next, makes for smooth transitions between activities, and helps me manage my time and meet your expectations.
Commentary: This item implies that visual orientation is due to language difficulty; however, I would suggest that the other way around is more likely. Because Joey is so visually oriented, oral communication is more difficult, as it makes less sense. Many autistic individuals (not all) are very proficient readers, and can communicate very well using computers and written language; however, they become like Mrs. Who when it comes to forming their own thoughts and words orally.
I have no problem with raising a Mrs. Who, so long as we can make the quotes all appropriate.
7. Focus and buildon what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough or that I need fixing. Trying anything new when I am almost sure to be met with criticism, however constructive, becomes something to be avoided. Look for my strengths and you'll find them. There's more than one right way to do most things.
Commentary: I have been begging Joey's teachers and therapists to do this- let's use the skills he does have, the interests and strengths he displays, to teach him things he has more trouble understanding and skills he has trouble mastering. I am tired of paying money to have him evaluated and programs planned, only to have those programs include teaching him to count, name colors, and recognize letters. He already counts to 120, knows all his colors (and in fact, defaults to this if he doesnt't understand the question you are asking), and can read. Thanks. Can we please use these skills to teach him to ask questions, respond to multiple cues, and other important building-block skills?
8. Help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply don't know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, I may be delighted to be included.
Commentary: When I hear about the trouble the parents with elementary-aged kids are having with getting the school to organize social groups, it makes me extremely angry. Other kids get opportunities to build social skills- lunchtimes, parties, class changes, special events- my child deserves a change to build these important skills as well. Social skills are vital life-skills. Without them, you cannot hold a job, participate in human relationships, or function with other people. We all know people with poor social skills, and the stigma they face. Who wants to be around people who are rude, cold, or appear self-centered? People who seem to ignore basic social etiquette? We label them as nerdy, weird, eccentric. We ostracize them. We don't invite them to the Christmas party, to lunch, or even to small conversation. We actively exclude people who are not pleasant to associate and socialize with. Social skills need to be taught, emphasized, and worked on, just as much as any OTHER skill. Yes, social skills are vital to independence and success!
9. Try to identify what triggers my meltdowns. This is termed the 'antecedent'. Meltdowns, blowups, tantrums, or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses have gone into overload. If you can figure out why my meltdowns occur, they can be prevented.
Commentary: This is a fun one. What situations cannot be avoided? What skills are needed to get Joey through these situations? My school personnel are sayign he cannot tantrum and be in an inclusion setting. This is bullcrap. His classroom may need a paraprofessional to watch for antecedents and help the teacher with teaching coping skills, but these meltdowns are not normal. They are not intentional. They are part of a disibility that should be accomodated, and when he is accomodated properly, THEY WON'T HAPPEN.
10. If you are a family member, please love me unconditionally. Banish thoughts like "If he would just..." and "Why can't she..." You didn't fulfill every last expectation your parents had for you, and you wouldn't like being constantly reminded of it. I didn't choose to have autism. Remember that it's happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you that I'm worth it.
Commentary: I thought this was an interesting item when I read it. When I wasn't fulfilling my parents' expectations for me, I bet you they were thinking "If only she would just..." and "Whay can't she...?" And in fact, when I am askign these questions, I am looking for answers to help Joey learn necessary skills. It also completely discounts a parent's frustration, which occurs even with parents of neuro-typical children. Are parents of neuro-typical children allowed to be upset, disappointed, and frustrated? If they are allowed, why aren't I? Perhaps we need to focus on the outcome instead. Being frustrated, disappointed, or upset does not give a parent permission to have their own temper tantrums. However, it happens. Then what? And what about other "family members"? And what about supporting those parents who are trying hard to support their children? Insurance semantics, school manipulation, anything and everything not to get services to my child, and telling me I have to now be a professional child advocate, speech therapist, occupational therapist, school teacher, special education teacher, etc.... Hello. I'm an art historian. If I could suddenly be all of these things, why do I have to pay all these people? Why do they have to go get college degrees in order to practice? What's that all about?
Continuing item #10:
It all comes down to three words: Patience. Patience. Patience.
Commentary: Yes, indeed. Somehow parents of disabled and "differently abled" children are supposed to have an extra measure of patience. It would be nice if those who are supposed to be supporting my child- his teachers, his therapists, his administrators, etc- would show that same support and patience... It get very frustrating to have pateince preached at you, when everyone around you is working against you, resulting in stress- that lowers patience.
Continuing item #10:
Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts that autism has given me. I may not be good at eye contact or conversation, but have you noticed that I don't lie, cheat at games, tattle on my classmates, or pass judgment on other people?
Commentary: Well, no. Joey does lie. He does tattle on classmates. He does try to cheat at games. There are people he likes, and people he doesn't like, which is definitely "passing judgement." These are normal things to be doing. However, he does have important talents and abilities. He may not be good at speaking, but he can tell time and read and count and understands concepts of quantity. He may not be able to initiation play with his classmates, but he can ride a bike in figure-8s and is excellent at memory games. This item was simply not stated very well.
Continuing item #10:
You are my foundation. Think through some of those societal rules and if they don't make sense for me, let them go. Be my advocate, be my friend, and we'll see just how far I can go.
Commentary: teaching social graces and basic social rules is vital to independence. Why is it necessary to sit in a resteraunt? Because you disturb other people if you stand to eat. If you don't greet people, they may find you rude. If you can't keep your hands to yourself, you could be arrested for assault! Which social rules do you really think can be set aside? How will setting those rules aside help the child become independent?
Continuing itme #10:
I probably won't be the next Michael Jordan, but with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.
They had autism too.
Commentary:
We only speculate that these people has an ASD. We don't know. However, I like the inclusion of Einstein on this list. I keep hearing about "Einstein Syndrome"... but from everything I read about it, it sounds like ASD to me! High-functioning people with autism still have autism. They still need to be taught to learn and to socialize. They need to be taught skills to encourage independence. They need to have their sensory issues addressed. They still need services. They have the same right to the opportunity to live independent, functional lives as any neuro-typical child.
Part One: Ten Things Your Autistic Child Wishes You Knew
This is a list that was posted on an autism support board I was reading.
1. I am a child with autism. I am not "autistic". My autism is one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings, and many talents, or are you just fat (overweight), myopic (wear glasses), or klutzy?
Commentary: Actually, when providing services or trying to get services, you do describe yourself as fat/obese, myopic, or even clumsy. If I want services for diabetes, I am referred to as diabetic. The problem comes when everything related to my child is blamed on his autism. 'Normal' children(or more properly, 'neuro-typical') have sensory issues, intense interests, and communication problems. Normal is what you are. There is no such thing as a neuro-typical individual; the idea is an ideal, and we all have quirks. The autism is only a problem when it become debilitating, and then we need to disccus Joey as autstic, in order to get him some help for dealing with attributes related to his autism which do not allow him to function in the neuro-typical, non-autistic world- blocks to his independence and happiness.
2. My sensory perceptions are disordered. This means the ordinary sights, sounds, smells, tastes, and touches of everyday life that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you, but I am really just trying to defend myself. A "simple" trip to the grocery store may be hell for me. My hearing may be hyperacute. Dozens of people are talking at once. The loudspeaker booms today's special. Muzak whines from the sound system. Cash registers beep and cough. A coffee grinder is chugging away. The meat cutter screeches, babies wail, carts creak, the flourescent lighting hums. My brain can't filter all the input and I'm in overload! My sense of smell may be highly sensitive. The fish isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out usausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles in Aisle 3 with ammonia... I can't sort it out, I'm too nauseous!
Because I'm visually oriented, this may be my first sense to become overstimulated. The flourescent light is too bright. It makes the room pulsate and hurts my eyes. Sometimes the light bounces off everything and distorts what I'm seeing. The space seems to be constantly changing. There's glare from windows, moving fans on the ceiling, so many bodies in consttant motion, too many items for me to be able to focus, and I may compensate with tunnel vision. All this affects my vestibular sense, and now I can't even tell where my body is in space. I may stumble, bump into things, or simply lay down to try to regroup.
Commentary: This item is useful for people with no background or understanding of autism. However, trips to the store or into the outside world are not "hell" for all people with autism. The point is to highlight sensory issues that are possible. Joey loves going to the store (though lately the Walmart has been a bit overwhelming). However, he has vestibular issues. Ever walked down the stairs, miscounted, and thought there was one more step? remember that feeling of your foot suddenly meeting the floor, when you were expecting more time before the shock hit your foot? My child goes through life liek that, with every step.
I also know that Joey does not only tunnel-vision, but tunnel-hears. When there is just too much, he cannot deal, and cannot either see or hear you; or he cannot filter propoerrly, so is seeing and hearing things other than what you think he is hearing or seeing. Neuro-typical people do this as well. Ever be listening intently to music or watching something, and suddenly realize someone is trying to get your attention?
3. Please remember to distinguish between won't (I choose not to) and can't (I'm not able to). Receptive and expressive language are both difficult for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear. "!!%#@%*^, Billy. (*&)^^$%$" Instead, come speak directly to me in plain words. "Please put your book in your desk. It's time to go to lunch." This tells me what you want me to do, and what is going to happen next. Now it's much easier for me to comply.
4. I am a concrete thinker. I interpret language literally. It's very confusing for me when you say "Hold your horses cowboy!" when what you really mean is "Please Stop running." Don't tell me something is a "piece of cake" when there's no dessert in sight and what you really mean is"This will be easy for you to do". When you say "It's pouring cats and dogs", I see pets coming out of a pitcher. Please just tell me "It's raining very hard". Idiom, puns, nuance, double entendre, and sarcasm are lost on me.
Commentary on 3 and together: Problem? In dealing with the neuro-typical world, these children need to learn about idioms and complex instruction and speech pattern. You cannot get a regular job and expect everyone around you to accommodate a need for plain English. If the goal is to help these people be independent, we need more services for speech and language. However, no one wants to provide them. The schools provide minimal service only if you have a severe (25% or greater) delay in speech and language skills. Insurance often does not cover speech therapy, as the service is viewed as educational. You get caught in a catch-22 of semantics!
5. Be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened, or confused, but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation, or other signs that something's wrong.
There's a flip side to this: I may sound like a little professor or a movie star, rattling off words or whole scripts well beyond my developmental age. These are messages that I've memorized from the world around me to compensate for my language deficits, because I know I'm expected to respond when spoken to. They may come from books, television, or speech of other people. It's called echolalia. I don't necessarily understand the context or terminology I'm using, I just know that it gets me off the hook for coming up with a reply.
Commentary: this is just more emphasis on the need for proper, appropriate, adequate speech and language instruction and services. To be able to function, an individual needs to handle complex and abstract concepts and thought. We need to do more work on how to teach these skills, just as we teach them how to learn other concepts and skills.
6. Because language is so difficult for me, I am very visually oriented. Show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of patient repetition helps me to learn. A visual schedule is extremely helpful as I move through my day. Like your day planner, it relieves me of the stress of having to remember what comes next, makes for smooth transitions between activities, and helps me manage my time and meet your expectations.
Commentary: This item implies that visual orientation is due to language difficulty; however, I would suggest that the other way around is more likely. Because Joey is so visually oriented, oral communication is more difficult, as it makes less sense. Many autistic individuals (not all) are very proficient readers, and can communicate very well using computers and written language; however, they become like Mrs. Who when it comes to forming their own thoughts and words orally.
I have no problem with raising a Mrs. Who, so long as we can make the quotes all appropriate.
7. Focus and buildon what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough or that I need fixing. Trying anything new when I am almost sure to be met with criticism, however constructive, becomes something to be avoided. Look for my strengths and you'll find them. There's more than one right way to do most things.
Commentary: I have been begging Joey's teachers and therapists to do this- let's use the skills he does have, the interests and strengths he displays, to teach him things he has more trouble understanding and skills he has trouble mastering. I am tired of paying money to have him evaluated and programs planned, only to have those programs include teaching him to count, name colors, and recognize letters. He already counts to 120, knows all his colors (and in fact, defaults to this if he doesnt't understand the question you are asking), and can read. Thanks. Can we please use these skills to teach him to ask questions, respond to multiple cues, and other important building-block skills?
8. Help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply don't know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, I may be delighted to be included.
Commentary: When I hear about the trouble the parents with elementary-aged kids are having with getting the school to organize social groups, it makes me extremely angry. Other kids get opportunities to build social skills- lunchtimes, parties, class changes, special events- my child deserves a change to build these important skills as well. Social skills are vital life-skills. Without them, you cannot hold a job, participate in human relationships, or function with other people. We all know people with poor social skills, and the stigma they face. Who wants to be around people who are rude, cold, or appear self-centered? People who seem to ignore basic social etiquette? We label them as nerdy, weird, eccentric. We ostracize them. We don't invite them to the Christmas party, to lunch, or even to small conversation. We actively exclude people who are not pleasant to associate and socialize with. Social skills need to be taught, emphasized, and worked on, just as much as any OTHER skill. Yes, social skills are vital to independence and success!
9. Try to identify what triggers my meltdowns. This is termed the 'antecedent'. Meltdowns, blowups, tantrums, or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses have gone into overload. If you can figure out why my meltdowns occur, they can be prevented.
Commentary: This is a fun one. What situations cannot be avoided? What skills are needed to get Joey through these situations? My school personnel are sayign he cannot tantrum and be in an inclusion setting. This is bullcrap. His classroom may need a paraprofessional to watch for antecedents and help the teacher with teaching coping skills, but these meltdowns are not normal. They are not intentional. They are part of a disibility that should be accomodated, and when he is accomodated properly, THEY WON'T HAPPEN.
10. If you are a family member, please love me unconditionally. Banish thoughts like "If he would just..." and "Why can't she..." You didn't fulfill every last expectation your parents had for you, and you wouldn't like being constantly reminded of it. I didn't choose to have autism. Remember that it's happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you that I'm worth it.
Commentary: I thought this was an interesting item when I read it. When I wasn't fulfilling my parents' expectations for me, I bet you they were thinking "If only she would just..." and "Whay can't she...?" And in fact, when I am askign these questions, I am looking for answers to help Joey learn necessary skills. It also completely discounts a parent's frustration, which occurs even with parents of neuro-typical children. Are parents of neuro-typical children allowed to be upset, disappointed, and frustrated? If they are allowed, why aren't I? Perhaps we need to focus on the outcome instead. Being frustrated, disappointed, or upset does not give a parent permission to have their own temper tantrums. However, it happens. Then what? And what about other "family members"? And what about supporting those parents who are trying hard to support their children? Insurance semantics, school manipulation, anything and everything not to get services to my child, and telling me I have to now be a professional child advocate, speech therapist, occupational therapist, school teacher, special education teacher, etc.... Hello. I'm an art historian. If I could suddenly be all of these things, why do I have to pay all these people? Why do they have to go get college degrees in order to practice? What's that all about?
Continuing item #10:
It all comes down to three words: Patience. Patience. Patience.
Commentary: Yes, indeed. Somehow parents of disabled and "differently abled" children are supposed to have an extra measure of patience. It would be nice if those who are supposed to be supporting my child- his teachers, his therapists, his administrators, etc- would show that same support and patience... It get very frustrating to have pateince preached at you, when everyone around you is working against you, resulting in stress- that lowers patience.
Continuing item #10:
Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts that autism has given me. I may not be good at eye contact or conversation, but have you noticed that I don't lie, cheat at games, tattle on my classmates, or pass judgment on other people?
Commentary: Well, no. Joey does lie. He does tattle on classmates. He does try to cheat at games. There are people he likes, and people he doesn't like, which is definitely "passing judgement." These are normal things to be doing. However, he does have important talents and abilities. He may not be good at speaking, but he can tell time and read and count and understands concepts of quantity. He may not be able to initiation play with his classmates, but he can ride a bike in figure-8s and is excellent at memory games. This item was simply not stated very well.
Continuing item #10:
You are my foundation. Think through some of those societal rules and if they don't make sense for me, let them go. Be my advocate, be my friend, and we'll see just how far I can go.
Commentary: teaching social graces and basic social rules is vital to independence. Why is it necessary to sit in a resteraunt? Because you disturb other people if you stand to eat. If you don't greet people, they may find you rude. If you can't keep your hands to yourself, you could be arrested for assault! Which social rules do you really think can be set aside? How will setting those rules aside help the child become independent?
Continuing itme #10:
I probably won't be the next Michael Jordan, but with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.
They had autism too.
Commentary:
We only speculate that these people has an ASD. We don't know. However, I like the inclusion of Einstein on this list. I keep hearing about "Einstein Syndrome"... but from everything I read about it, it sounds like ASD to me! High-functioning people with autism still have autism. They still need to be taught to learn and to socialize. They need to be taught skills to encourage independence. They need to have their sensory issues addressed. They still need services. They have the same right to the opportunity to live independent, functional lives as any neuro-typical child.
Wednesday, November 15, 2006
Busy busy busy
OK, some cute gliimpses of life in my house:
Over the weekend, the boys came piling into our room at 6am (now their usual time), so Allan went to the bathroom while I got up and dressed the boys. They got interested in some toys in Joey's room, so I went to get dressed myself. I heard the water come on, wished I could take a shower, too, and continued dressing. Out Allan came. It was far too quick for him to have taken a shower, and the water was still going...
We found the boys in the bathtub. Joey was stark nekkid (he took off his own shirt! yay!). Andy was fully clothed. They were enjoying their bath very much, thank you.
Joey has a new video he likes, Animusic. The best description of the product is "surreal", and Joey loves it. He was snuggling with Grandma watching his music, when one of our therapists arrived. Grandma leaned over and asked, "are you ready to go play with Miss Kate?" Joey sighed and said, "No, I'm tired."
We gave him another five minutes, when he stood up and said "OK, ready," and headed downstairs to the therapy room!
Andy went to school today. We joined Joey's class to try some "reverse mainstreaming" and for me to observe Joey. It was a disaster. He would not sit. He insisted on being everywhere except where the group was, and doing everything excpt what the group was doing. We left after an hour, with me thoroughly shaken by my clear lack of parenting an discipline skills. When we got to the car, he says very quietly, "You ok, Momma?"
I was putting the boys down, and I managed to get them both bathed, dressed, calmed, and into their beds- Allan was out. We have to sit with Joey, so I finished singing and sat in the chair. Andy promptly began to fuss. Joey called out, "Andy, whassa matter?" I finally got up and determined there was a need for a goodnight drink, supplied it, got Andy calmed, and returned to my chair. Joey piped up: "All better now. Good night, Momma. I love you." What else can you say to that, than, "I love, you, too"? To which he replied, without missing a beat, "I love you 44."
Over the weekend, the boys came piling into our room at 6am (now their usual time), so Allan went to the bathroom while I got up and dressed the boys. They got interested in some toys in Joey's room, so I went to get dressed myself. I heard the water come on, wished I could take a shower, too, and continued dressing. Out Allan came. It was far too quick for him to have taken a shower, and the water was still going...
We found the boys in the bathtub. Joey was stark nekkid (he took off his own shirt! yay!). Andy was fully clothed. They were enjoying their bath very much, thank you.
Joey has a new video he likes, Animusic. The best description of the product is "surreal", and Joey loves it. He was snuggling with Grandma watching his music, when one of our therapists arrived. Grandma leaned over and asked, "are you ready to go play with Miss Kate?" Joey sighed and said, "No, I'm tired."
We gave him another five minutes, when he stood up and said "OK, ready," and headed downstairs to the therapy room!
Andy went to school today. We joined Joey's class to try some "reverse mainstreaming" and for me to observe Joey. It was a disaster. He would not sit. He insisted on being everywhere except where the group was, and doing everything excpt what the group was doing. We left after an hour, with me thoroughly shaken by my clear lack of parenting an discipline skills. When we got to the car, he says very quietly, "You ok, Momma?"
I was putting the boys down, and I managed to get them both bathed, dressed, calmed, and into their beds- Allan was out. We have to sit with Joey, so I finished singing and sat in the chair. Andy promptly began to fuss. Joey called out, "Andy, whassa matter?" I finally got up and determined there was a need for a goodnight drink, supplied it, got Andy calmed, and returned to my chair. Joey piped up: "All better now. Good night, Momma. I love you." What else can you say to that, than, "I love, you, too"? To which he replied, without missing a beat, "I love you 44."
Monday, October 30, 2006
Sleepyheads
Joey hasn't been feeling too good. He's gone back to napping. He wants a storytime in bed, but he doesn't want to sleep there. He wants to sleep on the couch, with Little Bear playing. Sometimes Andy sleeps too, but not today, he was up right on time. I wanted to have them carve pumpkins, but I don't know if that will work now. Maybe I'll have them each do one tomorrow, when I can deal with them one at a time anyway.
I haven't had any time to be creative for Halloween. They're going to be a Panda and Fireman, just like last year, because when am I going to make costumes? You'd think being home all the time, I'd have all the time in the world to do stuff, but...
I haven't had any time to be creative for Halloween. They're going to be a Panda and Fireman, just like last year, because when am I going to make costumes? You'd think being home all the time, I'd have all the time in the world to do stuff, but...
Sunday, October 29, 2006
Four Weeks of Silence
Its been a long month.
In the good news front, Joey is enjoying Occupational Therapy. Jeanine is a fabulous therapist, and she really likes to sit down and thell me what they did and why they did it.
On the bad news front, we have a lot more spinning, a lot more door slamming, and a lot more grumpiness. Is he sick? Is he stressed? Do we have too many therapies now? Is school going OK? there is no way to know.
On the good news front, we are having more conversations. He can talk about school, what he did, what he ate for lunch, and what he likes and dislikes. He can talk about Little Bear episodes, and pretend to fly, and dance, and sing.
On the bad news front, we are having more tantrums over "mistakes" and spills, and he's been saying "oh, DAMN!" and "Godammit!" when he's upset.
On the good news front, he went to the pumpkin patch and seemed to enjoy himself and the other kids in his class. He;s very bossy!
On the bad news front, he's very bossy with Andy, who doesn't want to be bossed.
All in all, its nice to have some "normal" problems, but I could do without the increased behavioral issues.
I could also do with some time off. I took Allan out for his birthday. Woo-hoo, we had two hours all to ourselves. We had no idea what to say to each other. We had nothing but the boys to talk about. There was too much food served- we've gotten used to just eating whatever the boys are eating (why haven't I lost any weight???) We each had a drink. Mine cost eight bucks. Wowzers. Now we know why we don't do that anymore. And two hours later, we were back to screaming boys, trying to get them to go to sleep after being up and extra hour and half.
Lovely.
In the good news front, Joey is enjoying Occupational Therapy. Jeanine is a fabulous therapist, and she really likes to sit down and thell me what they did and why they did it.
On the bad news front, we have a lot more spinning, a lot more door slamming, and a lot more grumpiness. Is he sick? Is he stressed? Do we have too many therapies now? Is school going OK? there is no way to know.
On the good news front, we are having more conversations. He can talk about school, what he did, what he ate for lunch, and what he likes and dislikes. He can talk about Little Bear episodes, and pretend to fly, and dance, and sing.
On the bad news front, we are having more tantrums over "mistakes" and spills, and he's been saying "oh, DAMN!" and "Godammit!" when he's upset.
On the good news front, he went to the pumpkin patch and seemed to enjoy himself and the other kids in his class. He;s very bossy!
On the bad news front, he's very bossy with Andy, who doesn't want to be bossed.
All in all, its nice to have some "normal" problems, but I could do without the increased behavioral issues.
I could also do with some time off. I took Allan out for his birthday. Woo-hoo, we had two hours all to ourselves. We had no idea what to say to each other. We had nothing but the boys to talk about. There was too much food served- we've gotten used to just eating whatever the boys are eating (why haven't I lost any weight???) We each had a drink. Mine cost eight bucks. Wowzers. Now we know why we don't do that anymore. And two hours later, we were back to screaming boys, trying to get them to go to sleep after being up and extra hour and half.
Lovely.
Friday, September 29, 2006
New Therapies
We started teh new OT. I really like the therapist. She uses the time reserved for consultation to actually do the consultation, and talk to me about what Joey is doing and why he is doing it. She also seems to click OK with Joey, but we'll give that a couple more weeks to be sure.
Yesterday he made me a beautiful little bracelet with a pipecleaner and ponybeads. It apparently took him half the time she was planning, which is lovely. :)
I must admit being very angry with the school therapist, though. I understand if she can only handle ADL goals (adaptive life skills), but both these therapists and the guy at Kluge say Joey desperately needs OT for sensory integration problems. DEPERATELY. Yet nothing was said! Is she grossly incompetant (she couldn't see the need for sensory therapy), or grossly negligent (she just was going to let him rot because she doesn't have the equipment/time/inclination/doesn't want school to have to pay for it)? I thought the point of having these therpaists and experts on the IEP committee was to have good-faith opinions of what Joey needs, but apparently they are just one more roadblock- one more person have to fight for appropriate and adequate service.
Yesterday he made me a beautiful little bracelet with a pipecleaner and ponybeads. It apparently took him half the time she was planning, which is lovely. :)
I must admit being very angry with the school therapist, though. I understand if she can only handle ADL goals (adaptive life skills), but both these therapists and the guy at Kluge say Joey desperately needs OT for sensory integration problems. DEPERATELY. Yet nothing was said! Is she grossly incompetant (she couldn't see the need for sensory therapy), or grossly negligent (she just was going to let him rot because she doesn't have the equipment/time/inclination/doesn't want school to have to pay for it)? I thought the point of having these therpaists and experts on the IEP committee was to have good-faith opinions of what Joey needs, but apparently they are just one more roadblock- one more person have to fight for appropriate and adequate service.
Thursday, September 21, 2006
Things That Make Life Good (Part Two)
Listening to Joey singing "Wheels on the Bus." Including the verses we made up together.
Andy playing pirate.
Joey with a big chocolate chip cookie in his mouth, when he stirred to the dough to make it.
Boys giggling and running along the sidewalk, waiting for the school bus.
Andy wearing his construction worker hat, stethoscope, and carrying a watering can- then insisting that YOU wear this stuff.
It's the Great Pumpkin, Charlie Brown.
Joey talking on the telephone.
Andy talking on the telephone.
Wondering what everyone wants to be for Halloween.
New stories for boys.
Waking up with two boys bouncing on your tummy.
Goodnight kisses.
Good morning kisses.
"Gimme HUG!"
A boy crawling over you to snuggle in bed at 6 am.
Andy and his Blankie.
Andy playing pirate.
Joey with a big chocolate chip cookie in his mouth, when he stirred to the dough to make it.
Boys giggling and running along the sidewalk, waiting for the school bus.
Andy wearing his construction worker hat, stethoscope, and carrying a watering can- then insisting that YOU wear this stuff.
It's the Great Pumpkin, Charlie Brown.
Joey talking on the telephone.
Andy talking on the telephone.
Wondering what everyone wants to be for Halloween.
New stories for boys.
Waking up with two boys bouncing on your tummy.
Goodnight kisses.
Good morning kisses.
"Gimme HUG!"
A boy crawling over you to snuggle in bed at 6 am.
Andy and his Blankie.
And now, the moment we've all been waiting for...
My boys: Joey and Andy. Not that anyone is reading this thing, but there it is, if you happen to stumble in.
We're doing OK today. Andy tossed cookies in the car this morning, but he seems to be feeling much better now. Joey has been a bit quiet, too. We're hoping to go to the fair this weekend, but if they're sick...
We had to wash Blankie today (see previous paragraph), which of course is the End of the World As We Know It. A sub for Blankie had to be found, and none would do. Then I found Allan's old blanket, which his mom sent a while ago- before Andy was born. Anyway, I turned and offered it with, "How about Daddy's blankie?" He snatched it from my grasp, hugged it, and said "Yes." He napped with Daddy's Blankie, thank goodness. He was very happy to have his own Blankie back for bedtime, though.
OT starts next week. We're going to have him checked out by Kluge on Monday, but we figure the OT people can't hurt him.
Sunday, September 17, 2006
Another Day, Another Evaluation
We've just been busy as beavers in a willow wood here. School starting is always interesting, but we've also had a new speech therapist, the return of Joey's ABA therapists. We also had the OT evaluation.
Now, i wasn't that nervous about the OT eval. Everyone at school thinks he's doing so well, and he looks to me like he's doing so well, I just never thought about it. I was way more nervous about the speech eval. However, we've always hit speech hard, because we've always assumed that was his main weakness.
I also often drift into a "place" where Joey is looking good, and I'm comfortable with the help he is getting, and he seems to be improving, so I kind of forget he is disabled. You kind of think of him as 3 instead of 4 in the first place, and don't worry so much. The tantrums become just part of life. The screaming is just what Joey does. He's just a little boy.
We got the "results" of the eval yesterday. It was a real shock to see him being evaluated as 1% and 2% in things like gross motor and fine motor skills. (50% is normal). Is he really this bad off? Why hasn't anyone at school said anything? Why isn't he getting more therapy? What the HELL?
I've decided I'm going to call Kluge and have him evaluated again there- a second opinion. Ultimately, these people we just took him to is a business, and needs to make money. Kluge would be more impartial. But if this is the real picture, I think "conniption fit" is going to be a gentle word to use for what I'm going to have at school.
Now, i wasn't that nervous about the OT eval. Everyone at school thinks he's doing so well, and he looks to me like he's doing so well, I just never thought about it. I was way more nervous about the speech eval. However, we've always hit speech hard, because we've always assumed that was his main weakness.
I also often drift into a "place" where Joey is looking good, and I'm comfortable with the help he is getting, and he seems to be improving, so I kind of forget he is disabled. You kind of think of him as 3 instead of 4 in the first place, and don't worry so much. The tantrums become just part of life. The screaming is just what Joey does. He's just a little boy.
We got the "results" of the eval yesterday. It was a real shock to see him being evaluated as 1% and 2% in things like gross motor and fine motor skills. (50% is normal). Is he really this bad off? Why hasn't anyone at school said anything? Why isn't he getting more therapy? What the HELL?
I've decided I'm going to call Kluge and have him evaluated again there- a second opinion. Ultimately, these people we just took him to is a business, and needs to make money. Kluge would be more impartial. But if this is the real picture, I think "conniption fit" is going to be a gentle word to use for what I'm going to have at school.
Tuesday, September 05, 2006
Back to School
Glorious day! This morning, Joey was SO excited to get on the bus and get to school! He was so ready to get back to his life and friends and teachers. Its a momentous occasion: the first day of school.
The real surprise was when he came home. I asked, as usual, "Did you have fun at school today?" and he answered... yes, he ANSWERED... "yes!" I asked him about people he saw and things he might have done. My child can communicate to me about what he did during the day! Its a miracle!
Some days I watch hi mwith other kids and wonder if he will ever be able to blend with his peers, to communicate and connect with them. Then there are days like today, when I think, hey, he's a hard-working, sweet little guy! People like him! He's going to make it!
The real surprise was when he came home. I asked, as usual, "Did you have fun at school today?" and he answered... yes, he ANSWERED... "yes!" I asked him about people he saw and things he might have done. My child can communicate to me about what he did during the day! Its a miracle!
Some days I watch hi mwith other kids and wonder if he will ever be able to blend with his peers, to communicate and connect with them. Then there are days like today, when I think, hey, he's a hard-working, sweet little guy! People like him! He's going to make it!
Tuesday, August 29, 2006
Baking cookies
When I was little, mom sometimes made gingerbread for breakfast. i love gingerbread. So I got a box of gingerbread mix to pass on the delight. That's when I noticed that the side of the box had a recipe for cookies using the same mix. My kids eat cookies far better than cake, so bingo! Ginger cookie breakfast (with banana and milk- I'm not a complete oaf as a parent) was born!
This morning, Joey made the cookies. Well, he helped. He poured the warm water and teh extra flour into the bowl, and helped mix it up, then helped roll the dough into balls (not very successful at that yet), then squished them (all by himself!) to make snaps.
The trouble arose when we had to bake them. All hell broke loose. No-no-no, AAAAAAAAAAAAAAAAAAAAAAA, cookies now cookies cookies cookies....
Fifteen minutes and my sanity later, the cookies were being eaten. So again, i explained, "See? We have to bake the cookies. THey have to cook. Do you like them cooked? "
"Yes."
"Then we have to cook them. And it takes ten minutes to cook them, and then we have cookies. Okay? "
"Okay!"
At least teh cookies were good.
This morning, Joey made the cookies. Well, he helped. He poured the warm water and teh extra flour into the bowl, and helped mix it up, then helped roll the dough into balls (not very successful at that yet), then squished them (all by himself!) to make snaps.
The trouble arose when we had to bake them. All hell broke loose. No-no-no, AAAAAAAAAAAAAAAAAAAAAAA, cookies now cookies cookies cookies....
Fifteen minutes and my sanity later, the cookies were being eaten. So again, i explained, "See? We have to bake the cookies. THey have to cook. Do you like them cooked? "
"Yes."
"Then we have to cook them. And it takes ten minutes to cook them, and then we have cookies. Okay? "
"Okay!"
At least teh cookies were good.
Sunday, August 27, 2006
A Smack on the Chin
Joey has a new behavior stratgey for trying to get what he wants when Mom says he can't have it- he smack himself on the chin with the heel of his hand. Hard.
Up to this point, we have escaped with minimal self-injury, and I would still say we are escaping with minimal self-injury. Right now we have finger-biting when he gets frustrated, and now the attempt to smash his own jawbone when he's having a mini-tantrum. It could be worse. However, trying to stop these behaviors is not fun. Since he is doing these for frustration and anger, trying to stop the behavior makes it all worse. Not good.
Fortunately, school starts up next week, so we can get some help from his teachers. I'm sure his teacher is not going to stand for "no-no-no", then a smack on his chin, followed by a hard bite of his fingers. No, they don't go for that at school, and he knows it.
Up to this point, we have escaped with minimal self-injury, and I would still say we are escaping with minimal self-injury. Right now we have finger-biting when he gets frustrated, and now the attempt to smash his own jawbone when he's having a mini-tantrum. It could be worse. However, trying to stop these behaviors is not fun. Since he is doing these for frustration and anger, trying to stop the behavior makes it all worse. Not good.
Fortunately, school starts up next week, so we can get some help from his teachers. I'm sure his teacher is not going to stand for "no-no-no", then a smack on his chin, followed by a hard bite of his fingers. No, they don't go for that at school, and he knows it.
A Chat with a Friend
We were supposed to go to the pool on Friday, but everybody here was sick. :P Joey was really looking forward to it, too- we were going to see his friend, Charity. She's a darling little thing who is in Joey's classes at school- or has been. This year she will be in HeadStart. She was so upset, her mom let her call- and she and Joey talked on the phone together! It was amazing! He was so happy to have a call, and to have it be Charity! He did some echoing, but they seemed to be actually having a conversation. Incredible!
Saturday, August 19, 2006
Tough Day
So we took the guys to the Aquarium in Baltimore. I love the aquarium- and its gotten so huge! I used to love to just wander through the exihibits about the beaches, or the coral reef, it was so beautiful and soothing. Of course, that was when it was six bucks to get in and we were often the only people we saw. Now its $24 to get in and the place is packed at 9 am.
Andy had a grand time. We started off with Joey being with Dad and Andy being with Mom. That lasted about ten minutes. Andy loved each and every exhibit- he could have spent hours staring at manta rays, or at a live crab, or at a clown fish in an anemone. Joey had a bit more of a problem.
Imagine you are someone who is used to light, bright places with very few people, and get nervous if you can't see Mom and Dad. Now, imagine you are shoved into a very small, dark room full of strange people and watery, bubbly noises. Sound scary? Place autism on top of that. You can imagine how my day went.
It could have been worse. He loved the escalators. At each level, he would freak out at the beginning, and end up a screaming heap on the floor; I would sit with him a few minutes, maybe get him to look at a fish. Then we'd have to move. Start the process over. Repeat at least twice, when we could finally reach the escalator. Boy instantly transforms into angel. Get off escalator, and enter a cramped, dark room. Repeat for four levels. Now we're at the top of the coral reef. I probably should have taken him into the Rain Forest, where it was lighter; but my brain calculated open spaces with lives things and wild noises, crammed with people, next to a fairly quiet, mostly abandoned coral reef exihibit, and I made my choice. At each level, we had renewed meltdown. Repeat four times.
Fortunately, he liked sitting in the cafe, and he liked the frogs a little better- but he was really tired by then, and in his "no-no-no" mode. We did better with teh dolphin show, but it was the worst, most boring dolphin show I had ever seen. We finally got out in one peice.
Andy was sad to go. He had melted down when we first stepped into teh street from the parking garage. He had never been in a city like that before, and the tall buildings were just overwhelming. We let him sit for a minute with some assurances, and he got over it. Joey doesn't get over it.
Just when we think he's doing so so well, we have a day like this- a reminder that he may never be like other kids, running from tank to tank, poking fingers at fish and squealing with glee, then dragging Mom and Dad to the next tank. I don't even want to discuss the dirty looks I got. Outing like this remind me why other people with autistic kids don't go on outings like this. I still don't see how he's supposed to learn to deal with crowds if he's never in one.
Andy had a grand time. We started off with Joey being with Dad and Andy being with Mom. That lasted about ten minutes. Andy loved each and every exhibit- he could have spent hours staring at manta rays, or at a live crab, or at a clown fish in an anemone. Joey had a bit more of a problem.
Imagine you are someone who is used to light, bright places with very few people, and get nervous if you can't see Mom and Dad. Now, imagine you are shoved into a very small, dark room full of strange people and watery, bubbly noises. Sound scary? Place autism on top of that. You can imagine how my day went.
It could have been worse. He loved the escalators. At each level, he would freak out at the beginning, and end up a screaming heap on the floor; I would sit with him a few minutes, maybe get him to look at a fish. Then we'd have to move. Start the process over. Repeat at least twice, when we could finally reach the escalator. Boy instantly transforms into angel. Get off escalator, and enter a cramped, dark room. Repeat for four levels. Now we're at the top of the coral reef. I probably should have taken him into the Rain Forest, where it was lighter; but my brain calculated open spaces with lives things and wild noises, crammed with people, next to a fairly quiet, mostly abandoned coral reef exihibit, and I made my choice. At each level, we had renewed meltdown. Repeat four times.
Fortunately, he liked sitting in the cafe, and he liked the frogs a little better- but he was really tired by then, and in his "no-no-no" mode. We did better with teh dolphin show, but it was the worst, most boring dolphin show I had ever seen. We finally got out in one peice.
Andy was sad to go. He had melted down when we first stepped into teh street from the parking garage. He had never been in a city like that before, and the tall buildings were just overwhelming. We let him sit for a minute with some assurances, and he got over it. Joey doesn't get over it.
Just when we think he's doing so so well, we have a day like this- a reminder that he may never be like other kids, running from tank to tank, poking fingers at fish and squealing with glee, then dragging Mom and Dad to the next tank. I don't even want to discuss the dirty looks I got. Outing like this remind me why other people with autistic kids don't go on outings like this. I still don't see how he's supposed to learn to deal with crowds if he's never in one.
Thursday, August 17, 2006
A Conversation
So last night, I was talking with Grandma on the phone, and Joey wanted to talk to her ("Grandma!") so we handed him the phone- and he actually had a conversation with her! Then at dinner, he did it again! ("What are you doing" "Dinner." "What are you having for dinner?" "Green beans." ) How cool is THAT? Over the phone, even!
Testing
So Vonda came form the Matthew's Center. She asked the same questions everyone asks- what's the problem, what shape is he in, what does he like (for reinforcers) and dislike (in case of sensory issues), what behaviors do we see that are unusual.
I have a hard time with this questionaire. I'm fine with likes, and stressing the problem is communication, not intelligence or sensory issues; but trying to explain the exact problem with Joey is a little difficult, and dislikes is nearly impossible. I mean, I can name foods; but then, that;s his main sensory issue, and most of the dislikes I think are just normal dislikes, like not liking tomatoes. Lots of kids don't like tomatoes. Yes, he tracks. Not much to be done for that, especially since he can be very sneaky about it. OK, he's echolalic. At least he's putting the echoed words into an appropriate context much of the time. He's doing better, but he's clearly not talking at the level of a normal four-year-old. When kids ask him questions, he just stares at them blankly. Is that a social issue, or a communication issue?
Deneice (our speech therapist) is also testing him this week. They need the eval to get teh insurance to kick in. I'm really nervous about that, too- he's been testing well, even though in teh real world he's not up to par. Andy speaks more words, and more appropriately, than Joey. If he tests at 36 months or better, I could lose services! On the other hand, how great would it be if he were 36 months or better? If this therapy is working?
I have a hard time with this questionaire. I'm fine with likes, and stressing the problem is communication, not intelligence or sensory issues; but trying to explain the exact problem with Joey is a little difficult, and dislikes is nearly impossible. I mean, I can name foods; but then, that;s his main sensory issue, and most of the dislikes I think are just normal dislikes, like not liking tomatoes. Lots of kids don't like tomatoes. Yes, he tracks. Not much to be done for that, especially since he can be very sneaky about it. OK, he's echolalic. At least he's putting the echoed words into an appropriate context much of the time. He's doing better, but he's clearly not talking at the level of a normal four-year-old. When kids ask him questions, he just stares at them blankly. Is that a social issue, or a communication issue?
Deneice (our speech therapist) is also testing him this week. They need the eval to get teh insurance to kick in. I'm really nervous about that, too- he's been testing well, even though in teh real world he's not up to par. Andy speaks more words, and more appropriately, than Joey. If he tests at 36 months or better, I could lose services! On the other hand, how great would it be if he were 36 months or better? If this therapy is working?
Monday, August 14, 2006
A New Provider
So tomorrow the Matthew's Center is coming to evaluate Joey. In most ways, this is a good thing- they provide in-home therapies for about $40/hour, plan goals for $60/hour, and do things like respite and classroom paraprofessionals. These would be real, trained people working with Joey, not just some college kids I trained myself.
On the other hand, it means I need to scrub my house, organize the toys, and make sure everything is presentable. I'm not in the mood for some stranger to come into the house and tell me what a pigsty it is, and remind me that Joey needs order. Who doesn't?
On the other hand, it means I need to scrub my house, organize the toys, and make sure everything is presentable. I'm not in the mood for some stranger to come into the house and tell me what a pigsty it is, and remind me that Joey needs order. Who doesn't?
Friday, August 11, 2006
Day 6, no accidents.
Day 6 of "I want to wear underwear." Joey just decided this was it, he didn't want diapers anymore. He's progressed to telling us when he wants to go... so far, so good. Joy of joys! Now if I can only get the other one to go on the potty...
Friday, August 04, 2006
A moment's peace
Joey hasn't been taking naps for a few months now, but he has fallen asleep today. This is a good thing; he's been exhausted. All this potty training is so stressful, the heat has been unbearable, and we've been trying to redirect him from his latest stimming- putting objects to his face, then dropping them.
You'd think I'd be getting off my butt and getting something done with both boys asleep; but one is upstairs, one is downstairs, and I don't want to wake either of them. Although, which thing should be done first? Everything piles up so fast, its hard to decide what to get done, if in fact anythng can get done. I compromised by cleaning in the kitchen, and entering the blog entry. Now I'm going to get off my butt and clean a bathroom before the peace is done.
Too late.
You'd think I'd be getting off my butt and getting something done with both boys asleep; but one is upstairs, one is downstairs, and I don't want to wake either of them. Although, which thing should be done first? Everything piles up so fast, its hard to decide what to get done, if in fact anythng can get done. I compromised by cleaning in the kitchen, and entering the blog entry. Now I'm going to get off my butt and clean a bathroom before the peace is done.
Too late.
Wednesday, August 02, 2006
CNN
CNN is doing another series on autism:
http://www.cnn.com/2006/HEALTH/07/28/autism.overview/index.html
http://www.cnn.com/2006/HEALTH/07/28/autism.overview/index.html
A Trip to Tennessee
This is probably going to be just "part one"- it's late. But we went to Tennessee. We decided to drive- neither Allan nor I could imagine Joey in an airplane- and that was BEFORE he threw up while we were driving over the mountains. Nope. No planes for now.
However, car sickness is a normal problem for small kids. It was a trip that reminded us just how disabled Joey is. I hate trips like that. I far prefer the ones where I never even think about it, where its weeks later and I think "wow, he did really well that day" or when I am telling someone else what we did, all I remember is how much fun he had. Not that it was a bad trip; he enjoyed the dogs at Granny's and the slumber parties in the hotel rooms and all, but there were those little prickles of "this isn't right" and "normal kids don't do this."
The stopped at the Nashville zoo. Andy LOVED it. Its really a lovely zoo, I recommend it. Its shady and comfortable and they are doing a fabulous job. But Joey's main concern was riding in the rented stroller. He didn't want to look at the elephants or anything. I guess I could say he liked the meerkats, and the alligators, but anything that was any distance from the fence, forget it. Andy was straining over the fences to watch; Joey was wondering why the stroller wasn't moving, and how he could get it to move.
Then there was the dinner meltdown. Our second dinner at Granny's was late- significantly late, like 8 pm instead 6pm late. Any kid would have been grumpy. Andy was grumpy. But Joey just lost it completely. He was too hungry to eat. The dogs were all over him. Allan's sister was clearly annoyed with us. What my mother-in-law and father-in-law thought I have not the foggiest, I was afraid to even look, and I think they were trying to be tactfully silent. It was disaster.
While I'm at this point, I really wish I was better at describing Joey's meltdowns. When I tell these kinds of stories to my friends and relations, I often get told that most kids "meltdown" and would in a similar situation. I understand that concept, but clearly I am not communicating how Joey's meltdown is so different compared to what I see other kids do. When other kids meltdown, it is unpleasant, probably annoying to people who have never had children or are long done with them, and grates the parents' nerves. When my child melts down, the earth stops spinning and explodes. Partly this is because of my perspective- Joey is MY child, and having him freak out is very heart-wrenching for me. However, it really does seem to be far more violent than anything I have seen "normal" kids do anywhere, and its a different sort of unrelenting screaming, kicking, frustration to the core. When Andy melts down, no one is in immediate danger of losing one's mind or severe injury, he never purposely gets into my face and empties his lungs (and there is no doubt of the strength of Andy's lungs), the vibes of frustration are superficial and in the moment. When Joey melts down, his whole person seems to explode. Does that make any sense?
However, car sickness is a normal problem for small kids. It was a trip that reminded us just how disabled Joey is. I hate trips like that. I far prefer the ones where I never even think about it, where its weeks later and I think "wow, he did really well that day" or when I am telling someone else what we did, all I remember is how much fun he had. Not that it was a bad trip; he enjoyed the dogs at Granny's and the slumber parties in the hotel rooms and all, but there were those little prickles of "this isn't right" and "normal kids don't do this."
The stopped at the Nashville zoo. Andy LOVED it. Its really a lovely zoo, I recommend it. Its shady and comfortable and they are doing a fabulous job. But Joey's main concern was riding in the rented stroller. He didn't want to look at the elephants or anything. I guess I could say he liked the meerkats, and the alligators, but anything that was any distance from the fence, forget it. Andy was straining over the fences to watch; Joey was wondering why the stroller wasn't moving, and how he could get it to move.
Then there was the dinner meltdown. Our second dinner at Granny's was late- significantly late, like 8 pm instead 6pm late. Any kid would have been grumpy. Andy was grumpy. But Joey just lost it completely. He was too hungry to eat. The dogs were all over him. Allan's sister was clearly annoyed with us. What my mother-in-law and father-in-law thought I have not the foggiest, I was afraid to even look, and I think they were trying to be tactfully silent. It was disaster.
While I'm at this point, I really wish I was better at describing Joey's meltdowns. When I tell these kinds of stories to my friends and relations, I often get told that most kids "meltdown" and would in a similar situation. I understand that concept, but clearly I am not communicating how Joey's meltdown is so different compared to what I see other kids do. When other kids meltdown, it is unpleasant, probably annoying to people who have never had children or are long done with them, and grates the parents' nerves. When my child melts down, the earth stops spinning and explodes. Partly this is because of my perspective- Joey is MY child, and having him freak out is very heart-wrenching for me. However, it really does seem to be far more violent than anything I have seen "normal" kids do anywhere, and its a different sort of unrelenting screaming, kicking, frustration to the core. When Andy melts down, no one is in immediate danger of losing one's mind or severe injury, he never purposely gets into my face and empties his lungs (and there is no doubt of the strength of Andy's lungs), the vibes of frustration are superficial and in the moment. When Joey melts down, his whole person seems to explode. Does that make any sense?
Monday, July 24, 2006
Meltdown
So we had a whiz-bang yesterday. Joey has found a new stimming behavior- he presses all the cars he can hold to his face, then lets them drop. We think it started with Cookie Monster, devouring cookies and letting the crumbs drop everywhere. It's turned into something of a problem.
Telling him to stop is also a problem. One of the sure signs that the behavior is not appropriate: try to stop it, and complete meltdown ensues.
All in all, we're pretty lucky with Joey. He doesn't tantrum much; in fact, he's usually an easy-going little guy. When he does melt down, it's complete pandemonium. He screams with teh frustration and aggravation. He tosses himself on furniture or the floor. He throws things in all directions. If you try to restrain him, he beats on you. The entire day is shot with your nerves. Ever had someone get less than an inch from your face and just unleash their lungs?
Sometimes I forget that Joey is autistic, or disabled. Perhaps I want to forget. Perhaps he's just such a sweet little thing, and I'm just so used to him being who he is, it just doesn;t even cross my mind. Then there are the meltdowns. It becomes so mind-bendingly obvious that its not right. I've seen normal kids have tantrums. They are nothing compared to Joey, and are over before Joey even gets going. Even Andy stomps his feet and cries when he can't have another potato chip or has to go to bed- nothing compared to a Joey Meltdown.
There has to be something we can do to help him, to give him some tools to be able to calm himself down; but I have no idea what to do for him. We hug him mightily when it is all over, but what else can be done? We can't let him drown in these repetative, unappropriate actions. He drifts away into them, and we can't afford drifting. Its not like a normal kid, who vegs to process and rest. Joey just disappears. We lose simple skills. He talks less. He does less. He just drifts away.
Telling him to stop is also a problem. One of the sure signs that the behavior is not appropriate: try to stop it, and complete meltdown ensues.
All in all, we're pretty lucky with Joey. He doesn't tantrum much; in fact, he's usually an easy-going little guy. When he does melt down, it's complete pandemonium. He screams with teh frustration and aggravation. He tosses himself on furniture or the floor. He throws things in all directions. If you try to restrain him, he beats on you. The entire day is shot with your nerves. Ever had someone get less than an inch from your face and just unleash their lungs?
Sometimes I forget that Joey is autistic, or disabled. Perhaps I want to forget. Perhaps he's just such a sweet little thing, and I'm just so used to him being who he is, it just doesn;t even cross my mind. Then there are the meltdowns. It becomes so mind-bendingly obvious that its not right. I've seen normal kids have tantrums. They are nothing compared to Joey, and are over before Joey even gets going. Even Andy stomps his feet and cries when he can't have another potato chip or has to go to bed- nothing compared to a Joey Meltdown.
There has to be something we can do to help him, to give him some tools to be able to calm himself down; but I have no idea what to do for him. We hug him mightily when it is all over, but what else can be done? We can't let him drown in these repetative, unappropriate actions. He drifts away into them, and we can't afford drifting. Its not like a normal kid, who vegs to process and rest. Joey just disappears. We lose simple skills. He talks less. He does less. He just drifts away.
Saturday, July 22, 2006
Another day...
We ran out to Wakefield again this morning. Its a nice thing to do with two little guys when you're on your own. They have some room to run without Mom having to freak about the boys getting lost, snatched, or into serious trouble. They get to see sheep and pigs and cows and horses. I get to sit on a bench for five minutes.
The big discovery for today was walnuts. Wakefield has these huge, lovely walnut trees, and they drop walnuts. To a two-year-old and a four-year-old, large green walnuts look like india-rubber balls. They are apparently great for rolling, knocking together, putting on your head, putting on Mom's head, and tossing high into the air and seeing who can avoid it landing on their head. Wonderful things. Who needs toys? Just get yourself a nnice, shady walnut tree, and you're all set.
Joey has been doing some real conversing lately, and we're thrilled. He tells me he's hungry. "I'm hungry. I want goldfish." He asks what we're doing when we leave him at bedtime ("Daddy, what ya doin'?"). We actually have some back-and-forth conversations! ("I'm hungry." "What do you want to eat?" "I want goldfish!" "Would you like to have goldfish or mac-and-cheese?" "Mac and Cheese, please!"). It makes me cry just thinking about it!
We're having some bedtime blues. Joey insists on someone being there until he's asleep, but he wants to play in his window first. I don't mind. I'm usually not in a hurry at bedtime. However, I'm not always the one putting him to bed. We're not sure how to wean him off of us as a comfort object. We can't just close the door and keep him in his room like we used to when he'd have these spells.
Last night, we must have had the TV too loud- we were watching Miss Marple, and it wasn't nearly time for Joey to creep into the room- and yet there he was. Poor thing! He was so tired, and just wanted to lay in bed with us. We finally got him back to his own bed.
But the biggest news around here is Andy pee-ed on the potty! For those of you who are not entranced by the joys of potty training, you have no idea what a big deal this is- he's not even 2 1/2 yet! He may beat Joey out of diapers! Wouldn't that be weird...
The big discovery for today was walnuts. Wakefield has these huge, lovely walnut trees, and they drop walnuts. To a two-year-old and a four-year-old, large green walnuts look like india-rubber balls. They are apparently great for rolling, knocking together, putting on your head, putting on Mom's head, and tossing high into the air and seeing who can avoid it landing on their head. Wonderful things. Who needs toys? Just get yourself a nnice, shady walnut tree, and you're all set.
Joey has been doing some real conversing lately, and we're thrilled. He tells me he's hungry. "I'm hungry. I want goldfish." He asks what we're doing when we leave him at bedtime ("Daddy, what ya doin'?"). We actually have some back-and-forth conversations! ("I'm hungry." "What do you want to eat?" "I want goldfish!" "Would you like to have goldfish or mac-and-cheese?" "Mac and Cheese, please!"). It makes me cry just thinking about it!
We're having some bedtime blues. Joey insists on someone being there until he's asleep, but he wants to play in his window first. I don't mind. I'm usually not in a hurry at bedtime. However, I'm not always the one putting him to bed. We're not sure how to wean him off of us as a comfort object. We can't just close the door and keep him in his room like we used to when he'd have these spells.
Last night, we must have had the TV too loud- we were watching Miss Marple, and it wasn't nearly time for Joey to creep into the room- and yet there he was. Poor thing! He was so tired, and just wanted to lay in bed with us. We finally got him back to his own bed.
But the biggest news around here is Andy pee-ed on the potty! For those of you who are not entranced by the joys of potty training, you have no idea what a big deal this is- he's not even 2 1/2 yet! He may beat Joey out of diapers! Wouldn't that be weird...
Thursday, July 20, 2006
Wee Time
We spent the morning at Wee Time, a program for local toddlers a the rec center. I think it was originally intended to give moms a break, but its mostly a chance for kids to play with different toys and maybe even each other. The boys love it. Joey discovered teh sit and spin today. Perhaps not the best toy on the planet for him, but he was having fun. Then he was running around with a little airplane reciting "In the Night Kitchen." Very cute, and any talking I can get from him is a good thing.
Its a little odd to watch him, though. The other kids are running around, shouting, playing with each other, trying to get the best toys; Joey is in his own little world. Andy likes to try to play with the older kids, which annoys them. Joey plays by himself. He tried to play with one little girl today, but she didn't want to play; that was a bit of a shame. I would like to see his efforts at socializing rewarded.
Now off to speech therapy...
Its a little odd to watch him, though. The other kids are running around, shouting, playing with each other, trying to get the best toys; Joey is in his own little world. Andy likes to try to play with the older kids, which annoys them. Joey plays by himself. He tried to play with one little girl today, but she didn't want to play; that was a bit of a shame. I would like to see his efforts at socializing rewarded.
Now off to speech therapy...
Sunday, July 16, 2006
New Bus
I have to say, the new speech therapist seems to be making a lot of headway. Joey has been asking for things, asking questions, and answering his yes/no questions very well. Then there was yesterday.
I got Joey a copy of Sylvester: the Mouse with a Musical Ear. It was one of my favorites at his age, so I thought I'd give it a try- and he LOVES it. In fact, he loves it so much, I thought I'd take him downtown to the music store, so he could get an idea of where Sylvester lives. It was a huge success. He pointed out guitars, drums, violins, and even ukeleles; and I showed him a cello, which he thought was really cool. The folks at Picker's Supply were very nice about us being there, since it soon became obvious we weren't there to buy anything. Joey talked about Sylvester and everything. Happiness itself!
Then we went to the toy store, just to see if they had anything interesting... and they had a bigger version of Bus. Joey was instantly in love. So we bought him Big Bus, and headed home.
He was sitting in the back seat, and we were halfway home, when suddenly he says, "My name is Joey!"
"Yes, it is. Good job!" I replied. It was so nice and clear!
"Thank you, Mama!" he said.
"You're welcome!" I chimed back, now excited. Was I having a conversation with my son? I decided to test it.
"What do you have?"
"I have a bus," Joey piped right back. "Thank you, Mama!"
"I'm glad you like it!" I answered, now absolutely thrilled.
I had a conversation with my son!!!
We bought New Bus just in time. When we got home, Joey was playing with both Buses, and Old Bus broke! I fixed it, but then he gave it to Andy ("Here Andy, try this!"), and Andy broke it again this morning. I'm going to fix it and save it for the Christmas tree. It has been a faithful friend for my son.
I got Joey a copy of Sylvester: the Mouse with a Musical Ear. It was one of my favorites at his age, so I thought I'd give it a try- and he LOVES it. In fact, he loves it so much, I thought I'd take him downtown to the music store, so he could get an idea of where Sylvester lives. It was a huge success. He pointed out guitars, drums, violins, and even ukeleles; and I showed him a cello, which he thought was really cool. The folks at Picker's Supply were very nice about us being there, since it soon became obvious we weren't there to buy anything. Joey talked about Sylvester and everything. Happiness itself!
Then we went to the toy store, just to see if they had anything interesting... and they had a bigger version of Bus. Joey was instantly in love. So we bought him Big Bus, and headed home.
He was sitting in the back seat, and we were halfway home, when suddenly he says, "My name is Joey!"
"Yes, it is. Good job!" I replied. It was so nice and clear!
"Thank you, Mama!" he said.
"You're welcome!" I chimed back, now excited. Was I having a conversation with my son? I decided to test it.
"What do you have?"
"I have a bus," Joey piped right back. "Thank you, Mama!"
"I'm glad you like it!" I answered, now absolutely thrilled.
I had a conversation with my son!!!
We bought New Bus just in time. When we got home, Joey was playing with both Buses, and Old Bus broke! I fixed it, but then he gave it to Andy ("Here Andy, try this!"), and Andy broke it again this morning. I'm going to fix it and save it for the Christmas tree. It has been a faithful friend for my son.
Wednesday, July 12, 2006
Pirates
MacDonalds is doing a Pirates of the Caribbean promotion, and in Happy meals, they are giving out pirate toys. One of them is a headrag. My sons discovered them this evening.
Joey always lvoes funny hats. Its his thing. He has a big turkey for the fall, a flamingo, a Christmas tree, and a crab. He was all about the pirate scarf. So we put them on their heads, and Allan starts shouting things like "Shiver me timbers! Arrrrrg!" and "Yo ho ho and a bottle of rum! Arrrrrg!" and "Ahoy, mateys, lest ye walk the plank! Arrrg!" Combine this with my sons' new interest in Peter Pan, and you can imagine the rollicking fun to be had playing pirates at my house. Andy would squeal with delight every time Allan said "Arrrrg!" By the end of the evening, I had three pirates Arrrrg-ing (can Arrg be a verb?) at each other, squealing, and running all over the place.
Both boys are now asleep. They still have their pirate hats on. We had to take them off to change into PJs, but they had to be put back on for there to be peace on earth. We didn't even try to fight it. They won't be little for long.
Joey always lvoes funny hats. Its his thing. He has a big turkey for the fall, a flamingo, a Christmas tree, and a crab. He was all about the pirate scarf. So we put them on their heads, and Allan starts shouting things like "Shiver me timbers! Arrrrrg!" and "Yo ho ho and a bottle of rum! Arrrrrg!" and "Ahoy, mateys, lest ye walk the plank! Arrrg!" Combine this with my sons' new interest in Peter Pan, and you can imagine the rollicking fun to be had playing pirates at my house. Andy would squeal with delight every time Allan said "Arrrrg!" By the end of the evening, I had three pirates Arrrrg-ing (can Arrg be a verb?) at each other, squealing, and running all over the place.
Both boys are now asleep. They still have their pirate hats on. We had to take them off to change into PJs, but they had to be put back on for there to be peace on earth. We didn't even try to fight it. They won't be little for long.
Saturday, July 08, 2006
Mr. Guinea Pig
Tonight at dinner, Joey insisted that we call him "Mr. Guinea Pig" (that's Pinky Dinky Doo's pet guinea pig). He is SO CUTE. He puts his fingers up on each side of his head, and proclaims himself Mr. Guinea Pig. Then he pretends to be Mr. Guinea Pig for a while! How cool is THAT???
Friday, July 07, 2006
Animals animals animals!
So we took the boys to Maymont today. If you have never been, and you are hanging around Richmond, I recommend it thoroughly. Its worth the drive from here, that's for sure. They have a fabulous indoor, air conditioned nature center with live fish and animals, including otters! The boys were fascinated with the catfish. I think Joey could have spent the day staring at the fish and turtles (the Baltimore Aquarium trip we're planning ought to be a smash hit!). Then we took them over to the Children's Farm there- ou can feed the goats, and there are lots of other animals to see. Absolutely lovely!
The best part- that seems a weird way to put this, but anyway- was that when Joey did melt down, nobody looked at us like we were freaks, or bad parents, or anything. Everybody was SO nice, and SO sympathetic. I'm not just talking abotu people who worked there- the visitors, even older people who were talking a stroll, were all smiling and trying to be polite and nice. I was grateful. Joey was doing fine one minute, and not fine the next, and I've gotten used to the dirty looks we usually get- but they still are unpleasant. It was so much nicer to have folks understand we were working our way to the car, trying to calm him down, trying to keep the day from being a complete mess. thank you to all those people. ou made our lives SO much nicer!
The best part- that seems a weird way to put this, but anyway- was that when Joey did melt down, nobody looked at us like we were freaks, or bad parents, or anything. Everybody was SO nice, and SO sympathetic. I'm not just talking abotu people who worked there- the visitors, even older people who were talking a stroll, were all smiling and trying to be polite and nice. I was grateful. Joey was doing fine one minute, and not fine the next, and I've gotten used to the dirty looks we usually get- but they still are unpleasant. It was so much nicer to have folks understand we were working our way to the car, trying to calm him down, trying to keep the day from being a complete mess. thank you to all those people. ou made our lives SO much nicer!
Monday, July 03, 2006
Favorite words
Like most four-year-olds, Joey has favorite words. He loves to walk aroudn saying these words, just to feel them in his mouth. I remember doing that as a kid. I really liked the words "squash" and "golden", and remember walking around one day saying "buttercup" just because it felt good. Maybe I'm weird, but I see other little kids doing this all the time, often to the annoyance of their parents. Joey does it, too.
Today's word is "tenacious." He has an idea of what it means, because he loves Pinky Dinky Doo, and "tenacious" is a word they highlight. He's very good at saying it, too. Joey still has a thick quality to his voice (that I can get no therapist to recognize or acknowledge, even when I point it out directly), but its pretty clear and understandable. So he's playing being Pinky Dinky Doo and Mr. Guinea Pig, tooting on a kazoo and joyfully exclaiming, "TENACIOUS!"
Today's word is "tenacious." He has an idea of what it means, because he loves Pinky Dinky Doo, and "tenacious" is a word they highlight. He's very good at saying it, too. Joey still has a thick quality to his voice (that I can get no therapist to recognize or acknowledge, even when I point it out directly), but its pretty clear and understandable. So he's playing being Pinky Dinky Doo and Mr. Guinea Pig, tooting on a kazoo and joyfully exclaiming, "TENACIOUS!"
Saturday, July 01, 2006
Once Upon A Time, Before Autism Came Into My Life
I have picked up a really odd habit. I read stories about other people finding out their children are autistic.
I'm sure my therapist would say I'm in search connection, understanding, empathy, whatever. That's not the point- is it?
Usually when I read them, I cry. I do that a lot. I've ot some friends who will be surprised; I have other friends who will be thinking "again? That's not news." But there is something about knowing someone else had the sudden, wrenching, horrible moment I had when the word "autism" first fell from someone's lips, and they were talking about MY son. MY baby. MY sweet little darling boy who loved to give me a kiss, loved to tickle his baby brother's toes, loved cottage cheese with lima beans, loved knocking over block towers, loved getting raspberries on his tummy. I cannot tell you what a strange, other-worldly experience that is. It takes a while for the shock to wave off, and to realize once again that nothing has really changed, you're getting the help your baby needs instead of gliding about in blissful ignorance. Joey is still Joey. He didn't change. I did.
The pain is actually useful for me. Its a reminder that there is work to be done. It can be very easy to slip back into teh habits of ignorance. Before we knew, we could easily "read" Joey, and know what he wanted. We could attribute strange behavior to eccentricity of childhood. But then there's that pain, that flash of agony that says "move your butt, or he won't have a chance at a normal life. Move your butt, and at least he'll have a shot at independence."
Joey is considered mildly autistic. I can't imagine what someone with a severely austistic child feels like, or how they cope with that kind of devastation. If my moving my butt is just to give Joey a _shot_ at normal living... and remember, he may not, even as mild as he is, ever live independently. If I stall and don't do what is needful, he won't even have a chance at it- if I do everything right, he still may not ever live an independent life. Every minute counts. It can be very hard to try to get other people to understand that- even people who are supposed to understand and be helping, like school folks, therapists, family. Every minute counts.
So i seem to seek out these "once upon a time" punches in the stomach. Or are they kicks in the tuckus?
I'm sure my therapist would say I'm in search connection, understanding, empathy, whatever. That's not the point- is it?
Usually when I read them, I cry. I do that a lot. I've ot some friends who will be surprised; I have other friends who will be thinking "again? That's not news." But there is something about knowing someone else had the sudden, wrenching, horrible moment I had when the word "autism" first fell from someone's lips, and they were talking about MY son. MY baby. MY sweet little darling boy who loved to give me a kiss, loved to tickle his baby brother's toes, loved cottage cheese with lima beans, loved knocking over block towers, loved getting raspberries on his tummy. I cannot tell you what a strange, other-worldly experience that is. It takes a while for the shock to wave off, and to realize once again that nothing has really changed, you're getting the help your baby needs instead of gliding about in blissful ignorance. Joey is still Joey. He didn't change. I did.
The pain is actually useful for me. Its a reminder that there is work to be done. It can be very easy to slip back into teh habits of ignorance. Before we knew, we could easily "read" Joey, and know what he wanted. We could attribute strange behavior to eccentricity of childhood. But then there's that pain, that flash of agony that says "move your butt, or he won't have a chance at a normal life. Move your butt, and at least he'll have a shot at independence."
Joey is considered mildly autistic. I can't imagine what someone with a severely austistic child feels like, or how they cope with that kind of devastation. If my moving my butt is just to give Joey a _shot_ at normal living... and remember, he may not, even as mild as he is, ever live independently. If I stall and don't do what is needful, he won't even have a chance at it- if I do everything right, he still may not ever live an independent life. Every minute counts. It can be very hard to try to get other people to understand that- even people who are supposed to understand and be helping, like school folks, therapists, family. Every minute counts.
So i seem to seek out these "once upon a time" punches in the stomach. Or are they kicks in the tuckus?
Friday, June 30, 2006
Going to sleep
Joey is starting to go to sleep before dark again. I still have to stay with him (he taps the bed and says "Momma sleep!" ) but at least he's going to sleep.
There's nothing more wonderful than snuggling a boy while singing "wheels on the bus" and having him sing the song himself- including our own verses (The Andys on the bus say "Hug My Brother!", the Joeys on the bus say "Whee whee whee!", His mommy says "I love you", his daddy says "I'm proud of you", and the monsters on the bus go "rumpus, rumpus, rumpus" [while tickling you]).
Joey is also starting to listen and enjoy longer stories. He has discovered a book I loved as a little child: _Sylvester: the Mouse with the Musical Ear._ He likes the description of the city, and finding the mouse in the pictures. He's also very into _In The Night Kitchen_, and Allan has been reading him _Babar_. My boy is starting to outgrow his baby books!
There's nothing more wonderful than snuggling a boy while singing "wheels on the bus" and having him sing the song himself- including our own verses (The Andys on the bus say "Hug My Brother!", the Joeys on the bus say "Whee whee whee!", His mommy says "I love you", his daddy says "I'm proud of you", and the monsters on the bus go "rumpus, rumpus, rumpus" [while tickling you]).
Joey is also starting to listen and enjoy longer stories. He has discovered a book I loved as a little child: _Sylvester: the Mouse with the Musical Ear._ He likes the description of the city, and finding the mouse in the pictures. He's also very into _In The Night Kitchen_, and Allan has been reading him _Babar_. My boy is starting to outgrow his baby books!
Wednesday, June 28, 2006
Time
Allan and I came up with this, and are seeing if it starts making its way around the world as a chain email:
You need to be taking more time for yourself when:
Your hair repels water.
Your babysitter is shocked to hear from you, because she thought you moved.
Someone asks if you've read a good book lately, and you expound a postmodernist deconstruction of Pat the Bunny.
You consider anything other than Kraft Macaroni and Cheese to be gourmet cooking.
You have the "Sesame Street" theme stuck in your head, and the only song you can think of to get it out is the theme of "Blue's Clues."
You have to toss beer/wine from your fridge because it's too old to drink.
The last hit song you remember is "The Macarena."
Your idea of a fun night out is a trip to Walmart.
You think sleeping is a waste of time.
You need to be taking more time for yourself when:
Your hair repels water.
Your babysitter is shocked to hear from you, because she thought you moved.
Someone asks if you've read a good book lately, and you expound a postmodernist deconstruction of Pat the Bunny.
You consider anything other than Kraft Macaroni and Cheese to be gourmet cooking.
You have the "Sesame Street" theme stuck in your head, and the only song you can think of to get it out is the theme of "Blue's Clues."
You have to toss beer/wine from your fridge because it's too old to drink.
The last hit song you remember is "The Macarena."
Your idea of a fun night out is a trip to Walmart.
You think sleeping is a waste of time.
Monday, June 26, 2006
Focus
So today I started the "home program" I have for Joey- mostly workbooks of preschool skills he needs to start kindergarten. It wasn't a total disaster, but it was a little grating on the nerves. Basically, I show him the workpage, try to show him what he needs to do, and then use a DTT method of teaching him to communicate the skills he already has. He needs to be able to follow directions and complete worksheets to get through school.
I got him to teh table by enticing him with playdough. It was a good strategy- he wouldn't just come sit, especially when he saw there was going to be work involved, but teh playdough got him right to the table. Then we went through four activities. I thought we did really well. He only melted down twice in a major way, and just a few small frustration incidents. Not too bad. If I can get him doing this for me, he won't lose time when he gets back to school re-learning to focus.
I got him to teh table by enticing him with playdough. It was a good strategy- he wouldn't just come sit, especially when he saw there was going to be work involved, but teh playdough got him right to the table. Then we went through four activities. I thought we did really well. He only melted down twice in a major way, and just a few small frustration incidents. Not too bad. If I can get him doing this for me, he won't lose time when he gets back to school re-learning to focus.
Sentences
Sometimes its really odd to have Andy doign things Joey doesn't do.
Andy is starting to speak in sentences. His pronunciation may not be up to adult understanding, but as his parents, we can usually make out his words- and this week, they have been beautifully strung together: "I don't want that", "I like apples", "Time for bed!" Getting Joey to make a sentence is still a miracle, an occasion for massive cheering and high praise. Now Andy gets his! And having him talk about likes and dislikes is odd, too. The way we know what does dislikes is because of the fuss he makes. Andy tells us. Very strange- and wonderful!
I was in New Jersey this week for my job, and Allan had the guys. Joey uses the potty nicely for Dad... wish he would get on that potty for me! Or perhaps just with less fussing. Fuss fuss fuss! All that energy wasted!
They guys have been watching Disney movies this week, too. Movies Joey wouldn't even look at, Andy is enthralled. Now Joey is starting to get interested, too- I think he understands the conversations more, so they hold more interest. Right now, they are playing Robin Hood with the movie- lots of couch bouncing!
Andy is starting to speak in sentences. His pronunciation may not be up to adult understanding, but as his parents, we can usually make out his words- and this week, they have been beautifully strung together: "I don't want that", "I like apples", "Time for bed!" Getting Joey to make a sentence is still a miracle, an occasion for massive cheering and high praise. Now Andy gets his! And having him talk about likes and dislikes is odd, too. The way we know what does dislikes is because of the fuss he makes. Andy tells us. Very strange- and wonderful!
I was in New Jersey this week for my job, and Allan had the guys. Joey uses the potty nicely for Dad... wish he would get on that potty for me! Or perhaps just with less fussing. Fuss fuss fuss! All that energy wasted!
They guys have been watching Disney movies this week, too. Movies Joey wouldn't even look at, Andy is enthralled. Now Joey is starting to get interested, too- I think he understands the conversations more, so they hold more interest. Right now, they are playing Robin Hood with the movie- lots of couch bouncing!
Sunday, June 18, 2006
Super Joey
So Allan decided to play the Incredibles for Joey. Lots of the other kids at school are into superheroes (mostly Spiderman). Joey just LOVED it- superheroes, to the rescue! He spent the afternoon imitating the movie and being a superhero, jumping onto the furniture and stuff. Then he put on his own shoes... let me say that again, it is SO INCREDIBLE... THEN HE PUT ON HIS OWN SHOES. Yes, he did! All by himself, he put on his shoes, because they flash, and apparently that was a cool superpower. He played with his flashy shoes being a superhero! It was absolutely amazing!!!
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