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!
Wednesday, December 27, 2006
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?
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