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?
Friday, August 11, 2006
Day 6, no accidents.
Day 6 of "I want to wear underwear." Joey just decided this was it, he didn't want diapers anymore. He's progressed to telling us when he wants to go... so far, so good. Joy of joys! Now if I can only get the other one to go on the potty...
Friday, August 04, 2006
A moment's peace
Joey hasn't been taking naps for a few months now, but he has fallen asleep today. This is a good thing; he's been exhausted. All this potty training is so stressful, the heat has been unbearable, and we've been trying to redirect him from his latest stimming- putting objects to his face, then dropping them.
You'd think I'd be getting off my butt and getting something done with both boys asleep; but one is upstairs, one is downstairs, and I don't want to wake either of them. Although, which thing should be done first? Everything piles up so fast, its hard to decide what to get done, if in fact anythng can get done. I compromised by cleaning in the kitchen, and entering the blog entry. Now I'm going to get off my butt and clean a bathroom before the peace is done.
Too late.
You'd think I'd be getting off my butt and getting something done with both boys asleep; but one is upstairs, one is downstairs, and I don't want to wake either of them. Although, which thing should be done first? Everything piles up so fast, its hard to decide what to get done, if in fact anythng can get done. I compromised by cleaning in the kitchen, and entering the blog entry. Now I'm going to get off my butt and clean a bathroom before the peace is done.
Too late.
Wednesday, August 02, 2006
CNN
CNN is doing another series on autism:
http://www.cnn.com/2006/HEALTH/07/28/autism.overview/index.html
http://www.cnn.com/2006/HEALTH/07/28/autism.overview/index.html
A Trip to Tennessee
This is probably going to be just "part one"- it's late. But we went to Tennessee. We decided to drive- neither Allan nor I could imagine Joey in an airplane- and that was BEFORE he threw up while we were driving over the mountains. Nope. No planes for now.
However, car sickness is a normal problem for small kids. It was a trip that reminded us just how disabled Joey is. I hate trips like that. I far prefer the ones where I never even think about it, where its weeks later and I think "wow, he did really well that day" or when I am telling someone else what we did, all I remember is how much fun he had. Not that it was a bad trip; he enjoyed the dogs at Granny's and the slumber parties in the hotel rooms and all, but there were those little prickles of "this isn't right" and "normal kids don't do this."
The stopped at the Nashville zoo. Andy LOVED it. Its really a lovely zoo, I recommend it. Its shady and comfortable and they are doing a fabulous job. But Joey's main concern was riding in the rented stroller. He didn't want to look at the elephants or anything. I guess I could say he liked the meerkats, and the alligators, but anything that was any distance from the fence, forget it. Andy was straining over the fences to watch; Joey was wondering why the stroller wasn't moving, and how he could get it to move.
Then there was the dinner meltdown. Our second dinner at Granny's was late- significantly late, like 8 pm instead 6pm late. Any kid would have been grumpy. Andy was grumpy. But Joey just lost it completely. He was too hungry to eat. The dogs were all over him. Allan's sister was clearly annoyed with us. What my mother-in-law and father-in-law thought I have not the foggiest, I was afraid to even look, and I think they were trying to be tactfully silent. It was disaster.
While I'm at this point, I really wish I was better at describing Joey's meltdowns. When I tell these kinds of stories to my friends and relations, I often get told that most kids "meltdown" and would in a similar situation. I understand that concept, but clearly I am not communicating how Joey's meltdown is so different compared to what I see other kids do. When other kids meltdown, it is unpleasant, probably annoying to people who have never had children or are long done with them, and grates the parents' nerves. When my child melts down, the earth stops spinning and explodes. Partly this is because of my perspective- Joey is MY child, and having him freak out is very heart-wrenching for me. However, it really does seem to be far more violent than anything I have seen "normal" kids do anywhere, and its a different sort of unrelenting screaming, kicking, frustration to the core. When Andy melts down, no one is in immediate danger of losing one's mind or severe injury, he never purposely gets into my face and empties his lungs (and there is no doubt of the strength of Andy's lungs), the vibes of frustration are superficial and in the moment. When Joey melts down, his whole person seems to explode. Does that make any sense?
However, car sickness is a normal problem for small kids. It was a trip that reminded us just how disabled Joey is. I hate trips like that. I far prefer the ones where I never even think about it, where its weeks later and I think "wow, he did really well that day" or when I am telling someone else what we did, all I remember is how much fun he had. Not that it was a bad trip; he enjoyed the dogs at Granny's and the slumber parties in the hotel rooms and all, but there were those little prickles of "this isn't right" and "normal kids don't do this."
The stopped at the Nashville zoo. Andy LOVED it. Its really a lovely zoo, I recommend it. Its shady and comfortable and they are doing a fabulous job. But Joey's main concern was riding in the rented stroller. He didn't want to look at the elephants or anything. I guess I could say he liked the meerkats, and the alligators, but anything that was any distance from the fence, forget it. Andy was straining over the fences to watch; Joey was wondering why the stroller wasn't moving, and how he could get it to move.
Then there was the dinner meltdown. Our second dinner at Granny's was late- significantly late, like 8 pm instead 6pm late. Any kid would have been grumpy. Andy was grumpy. But Joey just lost it completely. He was too hungry to eat. The dogs were all over him. Allan's sister was clearly annoyed with us. What my mother-in-law and father-in-law thought I have not the foggiest, I was afraid to even look, and I think they were trying to be tactfully silent. It was disaster.
While I'm at this point, I really wish I was better at describing Joey's meltdowns. When I tell these kinds of stories to my friends and relations, I often get told that most kids "meltdown" and would in a similar situation. I understand that concept, but clearly I am not communicating how Joey's meltdown is so different compared to what I see other kids do. When other kids meltdown, it is unpleasant, probably annoying to people who have never had children or are long done with them, and grates the parents' nerves. When my child melts down, the earth stops spinning and explodes. Partly this is because of my perspective- Joey is MY child, and having him freak out is very heart-wrenching for me. However, it really does seem to be far more violent than anything I have seen "normal" kids do anywhere, and its a different sort of unrelenting screaming, kicking, frustration to the core. When Andy melts down, no one is in immediate danger of losing one's mind or severe injury, he never purposely gets into my face and empties his lungs (and there is no doubt of the strength of Andy's lungs), the vibes of frustration are superficial and in the moment. When Joey melts down, his whole person seems to explode. Does that make any sense?
Monday, July 24, 2006
Meltdown
So we had a whiz-bang yesterday. Joey has found a new stimming behavior- he presses all the cars he can hold to his face, then lets them drop. We think it started with Cookie Monster, devouring cookies and letting the crumbs drop everywhere. It's turned into something of a problem.
Telling him to stop is also a problem. One of the sure signs that the behavior is not appropriate: try to stop it, and complete meltdown ensues.
All in all, we're pretty lucky with Joey. He doesn't tantrum much; in fact, he's usually an easy-going little guy. When he does melt down, it's complete pandemonium. He screams with teh frustration and aggravation. He tosses himself on furniture or the floor. He throws things in all directions. If you try to restrain him, he beats on you. The entire day is shot with your nerves. Ever had someone get less than an inch from your face and just unleash their lungs?
Sometimes I forget that Joey is autistic, or disabled. Perhaps I want to forget. Perhaps he's just such a sweet little thing, and I'm just so used to him being who he is, it just doesn;t even cross my mind. Then there are the meltdowns. It becomes so mind-bendingly obvious that its not right. I've seen normal kids have tantrums. They are nothing compared to Joey, and are over before Joey even gets going. Even Andy stomps his feet and cries when he can't have another potato chip or has to go to bed- nothing compared to a Joey Meltdown.
There has to be something we can do to help him, to give him some tools to be able to calm himself down; but I have no idea what to do for him. We hug him mightily when it is all over, but what else can be done? We can't let him drown in these repetative, unappropriate actions. He drifts away into them, and we can't afford drifting. Its not like a normal kid, who vegs to process and rest. Joey just disappears. We lose simple skills. He talks less. He does less. He just drifts away.
Telling him to stop is also a problem. One of the sure signs that the behavior is not appropriate: try to stop it, and complete meltdown ensues.
All in all, we're pretty lucky with Joey. He doesn't tantrum much; in fact, he's usually an easy-going little guy. When he does melt down, it's complete pandemonium. He screams with teh frustration and aggravation. He tosses himself on furniture or the floor. He throws things in all directions. If you try to restrain him, he beats on you. The entire day is shot with your nerves. Ever had someone get less than an inch from your face and just unleash their lungs?
Sometimes I forget that Joey is autistic, or disabled. Perhaps I want to forget. Perhaps he's just such a sweet little thing, and I'm just so used to him being who he is, it just doesn;t even cross my mind. Then there are the meltdowns. It becomes so mind-bendingly obvious that its not right. I've seen normal kids have tantrums. They are nothing compared to Joey, and are over before Joey even gets going. Even Andy stomps his feet and cries when he can't have another potato chip or has to go to bed- nothing compared to a Joey Meltdown.
There has to be something we can do to help him, to give him some tools to be able to calm himself down; but I have no idea what to do for him. We hug him mightily when it is all over, but what else can be done? We can't let him drown in these repetative, unappropriate actions. He drifts away into them, and we can't afford drifting. Its not like a normal kid, who vegs to process and rest. Joey just disappears. We lose simple skills. He talks less. He does less. He just drifts away.
Saturday, July 22, 2006
Another day...
We ran out to Wakefield again this morning. Its a nice thing to do with two little guys when you're on your own. They have some room to run without Mom having to freak about the boys getting lost, snatched, or into serious trouble. They get to see sheep and pigs and cows and horses. I get to sit on a bench for five minutes.
The big discovery for today was walnuts. Wakefield has these huge, lovely walnut trees, and they drop walnuts. To a two-year-old and a four-year-old, large green walnuts look like india-rubber balls. They are apparently great for rolling, knocking together, putting on your head, putting on Mom's head, and tossing high into the air and seeing who can avoid it landing on their head. Wonderful things. Who needs toys? Just get yourself a nnice, shady walnut tree, and you're all set.
Joey has been doing some real conversing lately, and we're thrilled. He tells me he's hungry. "I'm hungry. I want goldfish." He asks what we're doing when we leave him at bedtime ("Daddy, what ya doin'?"). We actually have some back-and-forth conversations! ("I'm hungry." "What do you want to eat?" "I want goldfish!" "Would you like to have goldfish or mac-and-cheese?" "Mac and Cheese, please!"). It makes me cry just thinking about it!
We're having some bedtime blues. Joey insists on someone being there until he's asleep, but he wants to play in his window first. I don't mind. I'm usually not in a hurry at bedtime. However, I'm not always the one putting him to bed. We're not sure how to wean him off of us as a comfort object. We can't just close the door and keep him in his room like we used to when he'd have these spells.
Last night, we must have had the TV too loud- we were watching Miss Marple, and it wasn't nearly time for Joey to creep into the room- and yet there he was. Poor thing! He was so tired, and just wanted to lay in bed with us. We finally got him back to his own bed.
But the biggest news around here is Andy pee-ed on the potty! For those of you who are not entranced by the joys of potty training, you have no idea what a big deal this is- he's not even 2 1/2 yet! He may beat Joey out of diapers! Wouldn't that be weird...
The big discovery for today was walnuts. Wakefield has these huge, lovely walnut trees, and they drop walnuts. To a two-year-old and a four-year-old, large green walnuts look like india-rubber balls. They are apparently great for rolling, knocking together, putting on your head, putting on Mom's head, and tossing high into the air and seeing who can avoid it landing on their head. Wonderful things. Who needs toys? Just get yourself a nnice, shady walnut tree, and you're all set.
Joey has been doing some real conversing lately, and we're thrilled. He tells me he's hungry. "I'm hungry. I want goldfish." He asks what we're doing when we leave him at bedtime ("Daddy, what ya doin'?"). We actually have some back-and-forth conversations! ("I'm hungry." "What do you want to eat?" "I want goldfish!" "Would you like to have goldfish or mac-and-cheese?" "Mac and Cheese, please!"). It makes me cry just thinking about it!
We're having some bedtime blues. Joey insists on someone being there until he's asleep, but he wants to play in his window first. I don't mind. I'm usually not in a hurry at bedtime. However, I'm not always the one putting him to bed. We're not sure how to wean him off of us as a comfort object. We can't just close the door and keep him in his room like we used to when he'd have these spells.
Last night, we must have had the TV too loud- we were watching Miss Marple, and it wasn't nearly time for Joey to creep into the room- and yet there he was. Poor thing! He was so tired, and just wanted to lay in bed with us. We finally got him back to his own bed.
But the biggest news around here is Andy pee-ed on the potty! For those of you who are not entranced by the joys of potty training, you have no idea what a big deal this is- he's not even 2 1/2 yet! He may beat Joey out of diapers! Wouldn't that be weird...
Thursday, July 20, 2006
Wee Time
We spent the morning at Wee Time, a program for local toddlers a the rec center. I think it was originally intended to give moms a break, but its mostly a chance for kids to play with different toys and maybe even each other. The boys love it. Joey discovered teh sit and spin today. Perhaps not the best toy on the planet for him, but he was having fun. Then he was running around with a little airplane reciting "In the Night Kitchen." Very cute, and any talking I can get from him is a good thing.
Its a little odd to watch him, though. The other kids are running around, shouting, playing with each other, trying to get the best toys; Joey is in his own little world. Andy likes to try to play with the older kids, which annoys them. Joey plays by himself. He tried to play with one little girl today, but she didn't want to play; that was a bit of a shame. I would like to see his efforts at socializing rewarded.
Now off to speech therapy...
Its a little odd to watch him, though. The other kids are running around, shouting, playing with each other, trying to get the best toys; Joey is in his own little world. Andy likes to try to play with the older kids, which annoys them. Joey plays by himself. He tried to play with one little girl today, but she didn't want to play; that was a bit of a shame. I would like to see his efforts at socializing rewarded.
Now off to speech therapy...
Sunday, July 16, 2006
New Bus
I have to say, the new speech therapist seems to be making a lot of headway. Joey has been asking for things, asking questions, and answering his yes/no questions very well. Then there was yesterday.
I got Joey a copy of Sylvester: the Mouse with a Musical Ear. It was one of my favorites at his age, so I thought I'd give it a try- and he LOVES it. In fact, he loves it so much, I thought I'd take him downtown to the music store, so he could get an idea of where Sylvester lives. It was a huge success. He pointed out guitars, drums, violins, and even ukeleles; and I showed him a cello, which he thought was really cool. The folks at Picker's Supply were very nice about us being there, since it soon became obvious we weren't there to buy anything. Joey talked about Sylvester and everything. Happiness itself!
Then we went to the toy store, just to see if they had anything interesting... and they had a bigger version of Bus. Joey was instantly in love. So we bought him Big Bus, and headed home.
He was sitting in the back seat, and we were halfway home, when suddenly he says, "My name is Joey!"
"Yes, it is. Good job!" I replied. It was so nice and clear!
"Thank you, Mama!" he said.
"You're welcome!" I chimed back, now excited. Was I having a conversation with my son? I decided to test it.
"What do you have?"
"I have a bus," Joey piped right back. "Thank you, Mama!"
"I'm glad you like it!" I answered, now absolutely thrilled.
I had a conversation with my son!!!
We bought New Bus just in time. When we got home, Joey was playing with both Buses, and Old Bus broke! I fixed it, but then he gave it to Andy ("Here Andy, try this!"), and Andy broke it again this morning. I'm going to fix it and save it for the Christmas tree. It has been a faithful friend for my son.
I got Joey a copy of Sylvester: the Mouse with a Musical Ear. It was one of my favorites at his age, so I thought I'd give it a try- and he LOVES it. In fact, he loves it so much, I thought I'd take him downtown to the music store, so he could get an idea of where Sylvester lives. It was a huge success. He pointed out guitars, drums, violins, and even ukeleles; and I showed him a cello, which he thought was really cool. The folks at Picker's Supply were very nice about us being there, since it soon became obvious we weren't there to buy anything. Joey talked about Sylvester and everything. Happiness itself!
Then we went to the toy store, just to see if they had anything interesting... and they had a bigger version of Bus. Joey was instantly in love. So we bought him Big Bus, and headed home.
He was sitting in the back seat, and we were halfway home, when suddenly he says, "My name is Joey!"
"Yes, it is. Good job!" I replied. It was so nice and clear!
"Thank you, Mama!" he said.
"You're welcome!" I chimed back, now excited. Was I having a conversation with my son? I decided to test it.
"What do you have?"
"I have a bus," Joey piped right back. "Thank you, Mama!"
"I'm glad you like it!" I answered, now absolutely thrilled.
I had a conversation with my son!!!
We bought New Bus just in time. When we got home, Joey was playing with both Buses, and Old Bus broke! I fixed it, but then he gave it to Andy ("Here Andy, try this!"), and Andy broke it again this morning. I'm going to fix it and save it for the Christmas tree. It has been a faithful friend for my son.
Wednesday, July 12, 2006
Pirates
MacDonalds is doing a Pirates of the Caribbean promotion, and in Happy meals, they are giving out pirate toys. One of them is a headrag. My sons discovered them this evening.
Joey always lvoes funny hats. Its his thing. He has a big turkey for the fall, a flamingo, a Christmas tree, and a crab. He was all about the pirate scarf. So we put them on their heads, and Allan starts shouting things like "Shiver me timbers! Arrrrrg!" and "Yo ho ho and a bottle of rum! Arrrrrg!" and "Ahoy, mateys, lest ye walk the plank! Arrrg!" Combine this with my sons' new interest in Peter Pan, and you can imagine the rollicking fun to be had playing pirates at my house. Andy would squeal with delight every time Allan said "Arrrrg!" By the end of the evening, I had three pirates Arrrrg-ing (can Arrg be a verb?) at each other, squealing, and running all over the place.
Both boys are now asleep. They still have their pirate hats on. We had to take them off to change into PJs, but they had to be put back on for there to be peace on earth. We didn't even try to fight it. They won't be little for long.
Joey always lvoes funny hats. Its his thing. He has a big turkey for the fall, a flamingo, a Christmas tree, and a crab. He was all about the pirate scarf. So we put them on their heads, and Allan starts shouting things like "Shiver me timbers! Arrrrrg!" and "Yo ho ho and a bottle of rum! Arrrrrg!" and "Ahoy, mateys, lest ye walk the plank! Arrrg!" Combine this with my sons' new interest in Peter Pan, and you can imagine the rollicking fun to be had playing pirates at my house. Andy would squeal with delight every time Allan said "Arrrrg!" By the end of the evening, I had three pirates Arrrrg-ing (can Arrg be a verb?) at each other, squealing, and running all over the place.
Both boys are now asleep. They still have their pirate hats on. We had to take them off to change into PJs, but they had to be put back on for there to be peace on earth. We didn't even try to fight it. They won't be little for long.
Saturday, July 08, 2006
Mr. Guinea Pig
Tonight at dinner, Joey insisted that we call him "Mr. Guinea Pig" (that's Pinky Dinky Doo's pet guinea pig). He is SO CUTE. He puts his fingers up on each side of his head, and proclaims himself Mr. Guinea Pig. Then he pretends to be Mr. Guinea Pig for a while! How cool is THAT???
Friday, July 07, 2006
Animals animals animals!
So we took the boys to Maymont today. If you have never been, and you are hanging around Richmond, I recommend it thoroughly. Its worth the drive from here, that's for sure. They have a fabulous indoor, air conditioned nature center with live fish and animals, including otters! The boys were fascinated with the catfish. I think Joey could have spent the day staring at the fish and turtles (the Baltimore Aquarium trip we're planning ought to be a smash hit!). Then we took them over to the Children's Farm there- ou can feed the goats, and there are lots of other animals to see. Absolutely lovely!
The best part- that seems a weird way to put this, but anyway- was that when Joey did melt down, nobody looked at us like we were freaks, or bad parents, or anything. Everybody was SO nice, and SO sympathetic. I'm not just talking abotu people who worked there- the visitors, even older people who were talking a stroll, were all smiling and trying to be polite and nice. I was grateful. Joey was doing fine one minute, and not fine the next, and I've gotten used to the dirty looks we usually get- but they still are unpleasant. It was so much nicer to have folks understand we were working our way to the car, trying to calm him down, trying to keep the day from being a complete mess. thank you to all those people. ou made our lives SO much nicer!
The best part- that seems a weird way to put this, but anyway- was that when Joey did melt down, nobody looked at us like we were freaks, or bad parents, or anything. Everybody was SO nice, and SO sympathetic. I'm not just talking abotu people who worked there- the visitors, even older people who were talking a stroll, were all smiling and trying to be polite and nice. I was grateful. Joey was doing fine one minute, and not fine the next, and I've gotten used to the dirty looks we usually get- but they still are unpleasant. It was so much nicer to have folks understand we were working our way to the car, trying to calm him down, trying to keep the day from being a complete mess. thank you to all those people. ou made our lives SO much nicer!
Monday, July 03, 2006
Favorite words
Like most four-year-olds, Joey has favorite words. He loves to walk aroudn saying these words, just to feel them in his mouth. I remember doing that as a kid. I really liked the words "squash" and "golden", and remember walking around one day saying "buttercup" just because it felt good. Maybe I'm weird, but I see other little kids doing this all the time, often to the annoyance of their parents. Joey does it, too.
Today's word is "tenacious." He has an idea of what it means, because he loves Pinky Dinky Doo, and "tenacious" is a word they highlight. He's very good at saying it, too. Joey still has a thick quality to his voice (that I can get no therapist to recognize or acknowledge, even when I point it out directly), but its pretty clear and understandable. So he's playing being Pinky Dinky Doo and Mr. Guinea Pig, tooting on a kazoo and joyfully exclaiming, "TENACIOUS!"
Today's word is "tenacious." He has an idea of what it means, because he loves Pinky Dinky Doo, and "tenacious" is a word they highlight. He's very good at saying it, too. Joey still has a thick quality to his voice (that I can get no therapist to recognize or acknowledge, even when I point it out directly), but its pretty clear and understandable. So he's playing being Pinky Dinky Doo and Mr. Guinea Pig, tooting on a kazoo and joyfully exclaiming, "TENACIOUS!"
Saturday, July 01, 2006
Once Upon A Time, Before Autism Came Into My Life
I have picked up a really odd habit. I read stories about other people finding out their children are autistic.
I'm sure my therapist would say I'm in search connection, understanding, empathy, whatever. That's not the point- is it?
Usually when I read them, I cry. I do that a lot. I've ot some friends who will be surprised; I have other friends who will be thinking "again? That's not news." But there is something about knowing someone else had the sudden, wrenching, horrible moment I had when the word "autism" first fell from someone's lips, and they were talking about MY son. MY baby. MY sweet little darling boy who loved to give me a kiss, loved to tickle his baby brother's toes, loved cottage cheese with lima beans, loved knocking over block towers, loved getting raspberries on his tummy. I cannot tell you what a strange, other-worldly experience that is. It takes a while for the shock to wave off, and to realize once again that nothing has really changed, you're getting the help your baby needs instead of gliding about in blissful ignorance. Joey is still Joey. He didn't change. I did.
The pain is actually useful for me. Its a reminder that there is work to be done. It can be very easy to slip back into teh habits of ignorance. Before we knew, we could easily "read" Joey, and know what he wanted. We could attribute strange behavior to eccentricity of childhood. But then there's that pain, that flash of agony that says "move your butt, or he won't have a chance at a normal life. Move your butt, and at least he'll have a shot at independence."
Joey is considered mildly autistic. I can't imagine what someone with a severely austistic child feels like, or how they cope with that kind of devastation. If my moving my butt is just to give Joey a _shot_ at normal living... and remember, he may not, even as mild as he is, ever live independently. If I stall and don't do what is needful, he won't even have a chance at it- if I do everything right, he still may not ever live an independent life. Every minute counts. It can be very hard to try to get other people to understand that- even people who are supposed to understand and be helping, like school folks, therapists, family. Every minute counts.
So i seem to seek out these "once upon a time" punches in the stomach. Or are they kicks in the tuckus?
I'm sure my therapist would say I'm in search connection, understanding, empathy, whatever. That's not the point- is it?
Usually when I read them, I cry. I do that a lot. I've ot some friends who will be surprised; I have other friends who will be thinking "again? That's not news." But there is something about knowing someone else had the sudden, wrenching, horrible moment I had when the word "autism" first fell from someone's lips, and they were talking about MY son. MY baby. MY sweet little darling boy who loved to give me a kiss, loved to tickle his baby brother's toes, loved cottage cheese with lima beans, loved knocking over block towers, loved getting raspberries on his tummy. I cannot tell you what a strange, other-worldly experience that is. It takes a while for the shock to wave off, and to realize once again that nothing has really changed, you're getting the help your baby needs instead of gliding about in blissful ignorance. Joey is still Joey. He didn't change. I did.
The pain is actually useful for me. Its a reminder that there is work to be done. It can be very easy to slip back into teh habits of ignorance. Before we knew, we could easily "read" Joey, and know what he wanted. We could attribute strange behavior to eccentricity of childhood. But then there's that pain, that flash of agony that says "move your butt, or he won't have a chance at a normal life. Move your butt, and at least he'll have a shot at independence."
Joey is considered mildly autistic. I can't imagine what someone with a severely austistic child feels like, or how they cope with that kind of devastation. If my moving my butt is just to give Joey a _shot_ at normal living... and remember, he may not, even as mild as he is, ever live independently. If I stall and don't do what is needful, he won't even have a chance at it- if I do everything right, he still may not ever live an independent life. Every minute counts. It can be very hard to try to get other people to understand that- even people who are supposed to understand and be helping, like school folks, therapists, family. Every minute counts.
So i seem to seek out these "once upon a time" punches in the stomach. Or are they kicks in the tuckus?
Friday, June 30, 2006
Going to sleep
Joey is starting to go to sleep before dark again. I still have to stay with him (he taps the bed and says "Momma sleep!" ) but at least he's going to sleep.
There's nothing more wonderful than snuggling a boy while singing "wheels on the bus" and having him sing the song himself- including our own verses (The Andys on the bus say "Hug My Brother!", the Joeys on the bus say "Whee whee whee!", His mommy says "I love you", his daddy says "I'm proud of you", and the monsters on the bus go "rumpus, rumpus, rumpus" [while tickling you]).
Joey is also starting to listen and enjoy longer stories. He has discovered a book I loved as a little child: _Sylvester: the Mouse with the Musical Ear._ He likes the description of the city, and finding the mouse in the pictures. He's also very into _In The Night Kitchen_, and Allan has been reading him _Babar_. My boy is starting to outgrow his baby books!
There's nothing more wonderful than snuggling a boy while singing "wheels on the bus" and having him sing the song himself- including our own verses (The Andys on the bus say "Hug My Brother!", the Joeys on the bus say "Whee whee whee!", His mommy says "I love you", his daddy says "I'm proud of you", and the monsters on the bus go "rumpus, rumpus, rumpus" [while tickling you]).
Joey is also starting to listen and enjoy longer stories. He has discovered a book I loved as a little child: _Sylvester: the Mouse with the Musical Ear._ He likes the description of the city, and finding the mouse in the pictures. He's also very into _In The Night Kitchen_, and Allan has been reading him _Babar_. My boy is starting to outgrow his baby books!
Wednesday, June 28, 2006
Time
Allan and I came up with this, and are seeing if it starts making its way around the world as a chain email:
You need to be taking more time for yourself when:
Your hair repels water.
Your babysitter is shocked to hear from you, because she thought you moved.
Someone asks if you've read a good book lately, and you expound a postmodernist deconstruction of Pat the Bunny.
You consider anything other than Kraft Macaroni and Cheese to be gourmet cooking.
You have the "Sesame Street" theme stuck in your head, and the only song you can think of to get it out is the theme of "Blue's Clues."
You have to toss beer/wine from your fridge because it's too old to drink.
The last hit song you remember is "The Macarena."
Your idea of a fun night out is a trip to Walmart.
You think sleeping is a waste of time.
You need to be taking more time for yourself when:
Your hair repels water.
Your babysitter is shocked to hear from you, because she thought you moved.
Someone asks if you've read a good book lately, and you expound a postmodernist deconstruction of Pat the Bunny.
You consider anything other than Kraft Macaroni and Cheese to be gourmet cooking.
You have the "Sesame Street" theme stuck in your head, and the only song you can think of to get it out is the theme of "Blue's Clues."
You have to toss beer/wine from your fridge because it's too old to drink.
The last hit song you remember is "The Macarena."
Your idea of a fun night out is a trip to Walmart.
You think sleeping is a waste of time.
Monday, June 26, 2006
Focus
So today I started the "home program" I have for Joey- mostly workbooks of preschool skills he needs to start kindergarten. It wasn't a total disaster, but it was a little grating on the nerves. Basically, I show him the workpage, try to show him what he needs to do, and then use a DTT method of teaching him to communicate the skills he already has. He needs to be able to follow directions and complete worksheets to get through school.
I got him to teh table by enticing him with playdough. It was a good strategy- he wouldn't just come sit, especially when he saw there was going to be work involved, but teh playdough got him right to the table. Then we went through four activities. I thought we did really well. He only melted down twice in a major way, and just a few small frustration incidents. Not too bad. If I can get him doing this for me, he won't lose time when he gets back to school re-learning to focus.
I got him to teh table by enticing him with playdough. It was a good strategy- he wouldn't just come sit, especially when he saw there was going to be work involved, but teh playdough got him right to the table. Then we went through four activities. I thought we did really well. He only melted down twice in a major way, and just a few small frustration incidents. Not too bad. If I can get him doing this for me, he won't lose time when he gets back to school re-learning to focus.
Sentences
Sometimes its really odd to have Andy doign things Joey doesn't do.
Andy is starting to speak in sentences. His pronunciation may not be up to adult understanding, but as his parents, we can usually make out his words- and this week, they have been beautifully strung together: "I don't want that", "I like apples", "Time for bed!" Getting Joey to make a sentence is still a miracle, an occasion for massive cheering and high praise. Now Andy gets his! And having him talk about likes and dislikes is odd, too. The way we know what does dislikes is because of the fuss he makes. Andy tells us. Very strange- and wonderful!
I was in New Jersey this week for my job, and Allan had the guys. Joey uses the potty nicely for Dad... wish he would get on that potty for me! Or perhaps just with less fussing. Fuss fuss fuss! All that energy wasted!
They guys have been watching Disney movies this week, too. Movies Joey wouldn't even look at, Andy is enthralled. Now Joey is starting to get interested, too- I think he understands the conversations more, so they hold more interest. Right now, they are playing Robin Hood with the movie- lots of couch bouncing!
Andy is starting to speak in sentences. His pronunciation may not be up to adult understanding, but as his parents, we can usually make out his words- and this week, they have been beautifully strung together: "I don't want that", "I like apples", "Time for bed!" Getting Joey to make a sentence is still a miracle, an occasion for massive cheering and high praise. Now Andy gets his! And having him talk about likes and dislikes is odd, too. The way we know what does dislikes is because of the fuss he makes. Andy tells us. Very strange- and wonderful!
I was in New Jersey this week for my job, and Allan had the guys. Joey uses the potty nicely for Dad... wish he would get on that potty for me! Or perhaps just with less fussing. Fuss fuss fuss! All that energy wasted!
They guys have been watching Disney movies this week, too. Movies Joey wouldn't even look at, Andy is enthralled. Now Joey is starting to get interested, too- I think he understands the conversations more, so they hold more interest. Right now, they are playing Robin Hood with the movie- lots of couch bouncing!
Sunday, June 18, 2006
Super Joey
So Allan decided to play the Incredibles for Joey. Lots of the other kids at school are into superheroes (mostly Spiderman). Joey just LOVED it- superheroes, to the rescue! He spent the afternoon imitating the movie and being a superhero, jumping onto the furniture and stuff. Then he put on his own shoes... let me say that again, it is SO INCREDIBLE... THEN HE PUT ON HIS OWN SHOES. Yes, he did! All by himself, he put on his shoes, because they flash, and apparently that was a cool superpower. He played with his flashy shoes being a superhero! It was absolutely amazing!!!
Friday, June 16, 2006
Summer Begins
I never thought I would be one of those parents saying, "holy crap, it's SUMMER!!!" Yet here I am, and that's exactly the sentiment. What am I going to do with this child all summer?
I mean, I can do lots of the regular stuff- days at the pool (though how I am going to manage a 2-year-old and a 4-year-old at a public pool is beyond me), mornings at the playground, rainy days with the playdough. Then we'll have our other stuff- Tuesday and Thursday afternoons at speech therapy, Thursday morning at Wee Time. But I feel like other familiaes have the luxury of allowing their kids to languish during the steamy summer days; we can't do that. Joey is too desperately behind in language skills to let any precious bit of them go.
Sometimes I forget how far behind Joey really is, because I am busy rejoicing in what he is doing. The other night I was tucking him in bed and asked 'What song do you want? Do you want 'Wheels on the Bus'?" and was thrilled to hear the reply: "No. How about 'Michael Row the Boat Ashore'?" That's no script. That's not echo. That was a real response!!! And then I see other families in stores and playgrounds, having real conversations with their kids, and finding out the kid is only 3 years old... that's when I remember how much work we have to do, and how much work the poor child is doing just to try to get above the waterline.
So I am working on activities that encourage him to talk. I am hoping to get him interested in stories and creating stories, maybe even making small books. Somewhere I have some books with very simple narratives, I might pull them out for models. Get him thinking about story. He needs to be able to relate to what happened and what he has done during the day, and be able to talk about it. Dealing with conversations, not so sure what to do for that.
Ah, summer. At least he'll get to sleep in.
I mean, I can do lots of the regular stuff- days at the pool (though how I am going to manage a 2-year-old and a 4-year-old at a public pool is beyond me), mornings at the playground, rainy days with the playdough. Then we'll have our other stuff- Tuesday and Thursday afternoons at speech therapy, Thursday morning at Wee Time. But I feel like other familiaes have the luxury of allowing their kids to languish during the steamy summer days; we can't do that. Joey is too desperately behind in language skills to let any precious bit of them go.
Sometimes I forget how far behind Joey really is, because I am busy rejoicing in what he is doing. The other night I was tucking him in bed and asked 'What song do you want? Do you want 'Wheels on the Bus'?" and was thrilled to hear the reply: "No. How about 'Michael Row the Boat Ashore'?" That's no script. That's not echo. That was a real response!!! And then I see other families in stores and playgrounds, having real conversations with their kids, and finding out the kid is only 3 years old... that's when I remember how much work we have to do, and how much work the poor child is doing just to try to get above the waterline.
So I am working on activities that encourage him to talk. I am hoping to get him interested in stories and creating stories, maybe even making small books. Somewhere I have some books with very simple narratives, I might pull them out for models. Get him thinking about story. He needs to be able to relate to what happened and what he has done during the day, and be able to talk about it. Dealing with conversations, not so sure what to do for that.
Ah, summer. At least he'll get to sleep in.
Wednesday, June 14, 2006
Two more days
Only two days left of school. I'm working on putting together some activities for Joey and Andy to do this summer. I'm just hoping they will do them, without too much clamor for Pinky Dinky Doo and Sesame Street. We make some thank-you cards for Joey's teachers and aides today, and he seemed ot like sticking down stickers. That should occupy him for a whole... five minutes. I wish he would color and stuff. :P Rainy days are going to be the worst. Sunny days can be spent outside, but rainy days... there are only so many times I can go to Walmart and play Shapes and Letters!
Monday, June 12, 2006
A Boy and his Bus
Joey hasn't been feeling perfecty perfect over the weekend. Probably a little allergy, but he spent a lot of time just laying around. I did manage to get him out Saturday, though. We went to Wakefield. Bus came with us.
If you've never been to Wakefield, its lovely and quiet. Its one of the few places I can let the guys run, and not worry overmuch- you can see where they are, and there's nobody around, so they can run and see the animals and squeal as much as they like. there's a nice little path circuit to walk, along the river, up to teh house, around teh animals pens, and back.
We were almost back to teh car when I noticed Bus was missing. I knew he had brought it, because he was trying to hold my hand and Bus at the same time while we were looking at the blue heron on the river. About that same moment, Joey noticed Bus was gone, too. The world immediately began ending. With a normal four-year-old, you could ask some questions and limit your search a little; with Joey, all he could say was "No BUS!!! Bus all GONE!!!"
We walked the entire circuit again. Usually once through it enough for them to nap well; twice was totally exhausting. Trying to get Joey to scan the ground or the fencing for Bus was impossible; he had decended into the world of "No BUS!" Andy had no idea what was going on, though he was happy to see the sheep again. We found the Bus! He had placed it carefully on a fence while looking at the sheep! So all was well, and everybody slept all the way home in the car.
but after that, Joey wasn't feeling good enough to do fun stuff. He spent a lot of time watching Pinky Dinky Doo...
If you've never been to Wakefield, its lovely and quiet. Its one of the few places I can let the guys run, and not worry overmuch- you can see where they are, and there's nobody around, so they can run and see the animals and squeal as much as they like. there's a nice little path circuit to walk, along the river, up to teh house, around teh animals pens, and back.
We were almost back to teh car when I noticed Bus was missing. I knew he had brought it, because he was trying to hold my hand and Bus at the same time while we were looking at the blue heron on the river. About that same moment, Joey noticed Bus was gone, too. The world immediately began ending. With a normal four-year-old, you could ask some questions and limit your search a little; with Joey, all he could say was "No BUS!!! Bus all GONE!!!"
We walked the entire circuit again. Usually once through it enough for them to nap well; twice was totally exhausting. Trying to get Joey to scan the ground or the fencing for Bus was impossible; he had decended into the world of "No BUS!" Andy had no idea what was going on, though he was happy to see the sheep again. We found the Bus! He had placed it carefully on a fence while looking at the sheep! So all was well, and everybody slept all the way home in the car.
but after that, Joey wasn't feeling good enough to do fun stuff. He spent a lot of time watching Pinky Dinky Doo...
Wednesday, June 07, 2006
Andy
In case you were wondering, yes, I do have a second child. Andy is a beautiful, normal 2-year-old. The difference between Andy and Joey is sometimes startling. Sometimes the similarities are startling. And sometimes I wonder if I am getting to enjoy Andy and his amazing growing up like I should, since I spend so much time with Joey.
Sometimes I wonder what other people dream of for their children. I have forgotten much of what I was hoping for when Joey was two. Was I dreaming of him growing up, falling in love, getting married, having a good job? Was I hoping for a good college, a nice car, maybe a little house where I could watch my grandchildren? I don't remember wanting these things, or even thinking about them. I think I was trying to imagine him in a preschool and playing T-ball, but I'm not sure now. Since most of the parents I know are also "special ed", its hard to say what “normal” parents want for their kids.
And yet, though I am a “special ed” mom, I’m also a “normal” mom. I’m going to get to negotiate the world from both ends. Yet I’m not sure what I want for Andy is what other parents want. I am want him to feel loved and know I am so proud of him, even if I am spending more time working with Joey. I am him to know he is so special, too. I don’t want his primary self-image to be one of Brother of an Autistic Person, or Special Ed Sibling. I want him to have his own world and his own world view, and not be swallowed by Joey’s disability. I want his role as Joey’s brother to be like any other brother.
What do normal parents dream of and hope for?
Sometimes I wonder what other people dream of for their children. I have forgotten much of what I was hoping for when Joey was two. Was I dreaming of him growing up, falling in love, getting married, having a good job? Was I hoping for a good college, a nice car, maybe a little house where I could watch my grandchildren? I don't remember wanting these things, or even thinking about them. I think I was trying to imagine him in a preschool and playing T-ball, but I'm not sure now. Since most of the parents I know are also "special ed", its hard to say what “normal” parents want for their kids.
And yet, though I am a “special ed” mom, I’m also a “normal” mom. I’m going to get to negotiate the world from both ends. Yet I’m not sure what I want for Andy is what other parents want. I am want him to feel loved and know I am so proud of him, even if I am spending more time working with Joey. I am him to know he is so special, too. I don’t want his primary self-image to be one of Brother of an Autistic Person, or Special Ed Sibling. I want him to have his own world and his own world view, and not be swallowed by Joey’s disability. I want his role as Joey’s brother to be like any other brother.
What do normal parents dream of and hope for?
Sunday, June 04, 2006
Nothing like the sound of a scream in the morning
One of the problems with living with an autistic child is you get a lot of screaming. When Joey gets frustrated with me not understanding him, he screams right in my face. As in, he gets as close as he possibly can to my face, and screams with all the power in his lungs. It was old the first time it happened. Its a daily occurance, because Joey's handle on language is shaky at best. Sometimes it makes me mad- more because I know he's getting frustrated than at the screaming itself. Sometimes I get angry at the screaming itself. Sometimes I get angry because if he could just calm down for a second, I could take care of the problem. But usually I get upset because its just one of those reminders that not only is Joey disabled, but that disability is making him suffer- he WANTS to do teh right thing. He WANTS to understand. He just can't, and its frustrating him to teh point of screaming!
I don't think I know anyone who hasn't been frustrated to teh point of wanting to scream now and again. But every day? Can you even imagine feeling that way EVERY DAY, often several times a day, ALL the time?
I don't think I know anyone who hasn't been frustrated to teh point of wanting to scream now and again. But every day? Can you even imagine feeling that way EVERY DAY, often several times a day, ALL the time?
Tuesday, May 30, 2006
Weekends
Well, Memorial Day has come and gone again. I've been married nine years. And it was a lovely, hot weekend. We took the boys to a picnic that my boss invited us to. taking Joey into new situations is always a fun challenge. This time, he ended up in the neighbors' yards, once just to defeat the locked gate (he was successful) and once because the neighbor had cool toys outside (he wanted to ride on a ride-on shaped like a bike- they were very nice people, and let him play with it for a few minutes before we dragged him back to the party, where he promptly melted down.) I know some folks think we shouldn't take Joey to new places and picnics and stuff. Certainly the other party guests were dubious. I still can't figure out how they expect him to learn how to deal with social situations without ever experiencing them.
Monday we just put both of them diaper-free in the back yard and hosed them down all afternoon. Then Joey got the hose, and hosed ME down. Then Andy grabbed a pitcher and started throwing water on me... It was HYSTERICAL. Two little boys with that twinkle in their eyes... "Let's get mom!"
Monday we just put both of them diaper-free in the back yard and hosed them down all afternoon. Then Joey got the hose, and hosed ME down. Then Andy grabbed a pitcher and started throwing water on me... It was HYSTERICAL. Two little boys with that twinkle in their eyes... "Let's get mom!"
Sunday, May 28, 2006
MMR
One of my acquaintences sends me regular articles on research being done about autism. Most of it pertains to the thimerasol problem, but today's is about the MMR vaccine. Apparently, some autistic children "with bowel disorders" get the virus used in the vaccine stuck in their intestine. The conclusion is that this may cause autism, because they are looking at children who appeared to be developingnormally up to 12-18 months, when the vaccine is given.
Ok, I'll take the possibility, but there are logical problems with the brief report. For one, there is nothing about non-autistic children with bowel disorders- do they get this vaccine stuck in their intestines? Are bowel disorders- or the bowel disorders they are noting- exclusive to autistic children? If they are, then couldn't the disorder being causing the autism? What about children who were not developing normally before 12-18 months? Had you asked me if Joey was normal when he was 18 months old, I might have said yes; but now viewing our home movies, the autism seems pretty obvious to me. What is causing the autism of kids who are autistic before they get the shot? Could those children considered to have "regressive autism" actually have just gone undetected, and the autism just started to become more obvious at this age, when the problems of autism start coming into play, because you start expecting things like communication, increased fine motor and gross motor skills, and increased socialization (and these things just don't happen, or start happening in abnormal ways)?
The other conclusion is that this supports a "causal link" between MMR and "painful gut disorders" in autistic children. This is more logical, and yet still correllational, not causal. Did those disorders exist before the shot, causing the virus to build up? Does the virus cause painful effects of any kind? These things aren't really addressed. Does it cause problems in non-autistic children with these "gut disorders"?
As someone still searching for the "why?", these types of reports aren't giving me any answers. I hope they are giving SOMEONE answers, because then we can do something for other kids who may really be being impacted by vaccines, but my kid wasn't. Is there anyone out there looking for the answer to our "why?"
Friday, May 26, 2006
Persistant Speech
One of the joys of Joey is he has "persistant speech"- this is a form of echolalia where he repeats phrases over and over and over and over and over and over... and it takes some getting used to. In fact, it grates on nerves even when you know its coming. Its a greaqt reminder not to cuss in front of him- because you'll likely hear it coming back at you again... and again... and again... and again...
The phrase of the hour right as I am writing this is "oops! derailed!" He heard this watching the DVD we made of the beach trip. Its actually not as annoying as phrases he repeats when he's upset. Sometimes you just wish he wouldn't scream "Joey, NO!" over and over again after trying something dangerous. I feel bad enough about having to raise my voice, having it echoed ad nauseum certainly doesn't help my nerves. Then there's "take it easy, Joey!" At least that one I feel like he's trying to calm himself down.
There must be some way to break him out of the downward spiral of persistant speech, but I haven't found it. Anything I do just makes it worse, and increases the volume. Yeeks!
The phrase of the hour right as I am writing this is "oops! derailed!" He heard this watching the DVD we made of the beach trip. Its actually not as annoying as phrases he repeats when he's upset. Sometimes you just wish he wouldn't scream "Joey, NO!" over and over again after trying something dangerous. I feel bad enough about having to raise my voice, having it echoed ad nauseum certainly doesn't help my nerves. Then there's "take it easy, Joey!" At least that one I feel like he's trying to calm himself down.
There must be some way to break him out of the downward spiral of persistant speech, but I haven't found it. Anything I do just makes it worse, and increases the volume. Yeeks!
Wednesday, May 24, 2006
Normal problems
When your life is whirlwind, sometimes its nice to realize that a little breeze is a normal thing. Sometimes I'm thankful for wierd things, I guess. I often think how lucky I am to have my Joey and my Andy. They are both little sweethearts, with big blue eyes and hugs to share. Sometimes I think how lucky we are with Joey. For all the problems and storms we are living through, Joey is really not too bad off. He's got a real shot at living a normal life in the long run (provided I do the needful now). So many of the other kids in Joey's school won't have that chance. But most often, I am hit with the realization that a problem I am having with Joey is a normal problem- a problem any parent would have, and I find myself grateful for it- for the problem. A normal problem means a normal kid. The more normal problems I have, the better.
So many of Joey's problems are automatically attributed to his disability. Granted, his disability often exacerbates an otherwise normal problem. He melts down faster, he had some sensory issues, but by and large, I feel like many of Joey's specialists and teachers either forget he is disabled, or the over-atrribute to disability. Joey is four years old. Normal four year olds don't like bedtime. They dislike broccoli. They don't want to leave Chuck E. Cheese's. They want the same story read over and over. They want to watch TV all afternoon. These are normal problems. Hallelujah, my child is four! Most four year olds need transition cues. Joey may need more than other kids, but needing cues is normal. Most four-year-olds have foods they dislike, Joey just has more than usual- but wanting to eat M&C every night for a week is a normal toddler/preschooler behavior.
So I often try to keep in mind what Joey's teacher told me last year: it really doesn't matter what's normal and what's the autism, as long as we teach Joey was is appropriate and what is not. Inappropriate behaviors need to go away, even if they are normal for his age; appropriate behaviors need to be encouraged, no matter his disability.
So many of Joey's problems are automatically attributed to his disability. Granted, his disability often exacerbates an otherwise normal problem. He melts down faster, he had some sensory issues, but by and large, I feel like many of Joey's specialists and teachers either forget he is disabled, or the over-atrribute to disability. Joey is four years old. Normal four year olds don't like bedtime. They dislike broccoli. They don't want to leave Chuck E. Cheese's. They want the same story read over and over. They want to watch TV all afternoon. These are normal problems. Hallelujah, my child is four! Most four year olds need transition cues. Joey may need more than other kids, but needing cues is normal. Most four-year-olds have foods they dislike, Joey just has more than usual- but wanting to eat M&C every night for a week is a normal toddler/preschooler behavior.
So I often try to keep in mind what Joey's teacher told me last year: it really doesn't matter what's normal and what's the autism, as long as we teach Joey was is appropriate and what is not. Inappropriate behaviors need to go away, even if they are normal for his age; appropriate behaviors need to be encouraged, no matter his disability.
Monday, May 22, 2006
Things that make life good (Part One)
Joey's face just above mine, saying "Good Morning, Momma!"
Boy trains
Trying to find something under the sofa, and suddenly having a boy on your back.
Two little guys in a kissy mood.
Click, clack, moo...
The soft squeak of a floorboard around 6:30 am, and you know it isn't the cat coming to see if you are awake yet.
Whaaaaa... Da!
Two giggles from the top of the stairs.
Placing a bowl of Carl's ice cream into expectant fingers.
Boy hog
Waltzing Mathilda... Wheels on the Bus... One, Two, Buckle My Shoe... Garden, Garden, G-G-G...
Get the Kitty!
Little fingers trying to tickle me
Little head against my knees, lounging on the couch to the sights and sounds of the beach
Counting to 29.
Two boys leaping from the couch to the floor pillows
J-O-E-Y
Sometimes it looked like a... but it wasn't a...
It's an owl
Two boys bouncing to the door when Daddy comes home
Boy trains
Trying to find something under the sofa, and suddenly having a boy on your back.
Two little guys in a kissy mood.
Click, clack, moo...
The soft squeak of a floorboard around 6:30 am, and you know it isn't the cat coming to see if you are awake yet.
Whaaaaa... Da!
Two giggles from the top of the stairs.
Placing a bowl of Carl's ice cream into expectant fingers.
Boy hog
Waltzing Mathilda... Wheels on the Bus... One, Two, Buckle My Shoe... Garden, Garden, G-G-G...
Get the Kitty!
Little fingers trying to tickle me
Little head against my knees, lounging on the couch to the sights and sounds of the beach
Counting to 29.
Two boys leaping from the couch to the floor pillows
J-O-E-Y
Sometimes it looked like a... but it wasn't a...
It's an owl
Two boys bouncing to the door when Daddy comes home
Saturday, May 20, 2006
Bedtime and Showers
This week Joey is insisting on not sleeping until it is dark outside, and having me stay with him until he falls asleep. Having me stay with him is a phase he slides in and out of; in a couple of weeks, he'll complain about me staying. The light thing is a little more worrisome. Summer is a long few months of waiting until 9 to be able to clean, work with my students, or take a shower.
Showers are one thing that has become a trade-able commodity in our household. There is little chance of getting one while Joey is awake, because he needs to be constantly supervised now that he can get out of his child-safe room. However, now that he is up constantly from 6 am to 9 pm, that doesn't leave much time for both a shower and sleeping. At least Andy still naps. But getting in showers this summer should be very interesting- there are only so many hours in a day. Sleep is another one of those valuable commodities, but I have insomnia on my side. However, if I don't get some sleep, its very hard to deal with Joey screaming the next day... and poor Andy! He's VERY two. That takes some patience to deal with, too. Plus, he imitates his brother- in fact, I often now have to go look to see who is raising the ruckus.
The fun part of all this is that I get to snuggle Joey to sleep. Allan gets to snuggle Andy to sleep (and Andy is now in his Big Bed, and very happy about it, which helps, too). Tonight we sang some songs together (would I have guess a year ago that my Joey would be singing songs now?) after reading some stories, and he settled himself and got to sleep. What a cutie. We're SO lucky that he likes being hugged and squished. I can't imagine the nightmare of having a child who didn't like being touched. Joey is into the hugging. I should probably get him a weighted vest when he gets a little older, but for now, I can hug him, and his teachers can hug him, and he really feels so much better.
Showers are one thing that has become a trade-able commodity in our household. There is little chance of getting one while Joey is awake, because he needs to be constantly supervised now that he can get out of his child-safe room. However, now that he is up constantly from 6 am to 9 pm, that doesn't leave much time for both a shower and sleeping. At least Andy still naps. But getting in showers this summer should be very interesting- there are only so many hours in a day. Sleep is another one of those valuable commodities, but I have insomnia on my side. However, if I don't get some sleep, its very hard to deal with Joey screaming the next day... and poor Andy! He's VERY two. That takes some patience to deal with, too. Plus, he imitates his brother- in fact, I often now have to go look to see who is raising the ruckus.
The fun part of all this is that I get to snuggle Joey to sleep. Allan gets to snuggle Andy to sleep (and Andy is now in his Big Bed, and very happy about it, which helps, too). Tonight we sang some songs together (would I have guess a year ago that my Joey would be singing songs now?) after reading some stories, and he settled himself and got to sleep. What a cutie. We're SO lucky that he likes being hugged and squished. I can't imagine the nightmare of having a child who didn't like being touched. Joey is into the hugging. I should probably get him a weighted vest when he gets a little older, but for now, I can hug him, and his teachers can hug him, and he really feels so much better.
Friday, May 19, 2006
Upcoming Class Visit
Last year, Joey's preschool teacher was all about parents and siblings coming in and participating. This year, our teacher was exactly the opposite- she actively excluded us from Joey's school life. Now she's gone to have her baby, and the sub is letting em come to see Joey! I am SO EXCITED! Christina is going to watch Andy, and I'll get to see what Joey can do! He always does so much more at school than he will do for me at home. I can hardly wait!
Tuesday, May 16, 2006
Pinky Dinky Doo
If you have a child having trouble with narrative and sequence, allow me to recommend a TV show... "Pinky Dinky Doo."
Its not what is sounds like. Allan and I were definitely skeptical when we saw the ads for it, but since it talked about telling stories, we decided to give it a watch and see if it would be useful. It's really a cute show, and includes some games about narrrative elements and sequence, some subtle positive messages about health and food choices, vocabulary, and everyday social situations. We were so pleased, we let Joey watch it, and he LOVES it! He's picked right up on the little games, especially the sequence ones.
A year ago, we were please to hear words coming from his mouth. Six months ago, he called me "momma" for the first time. Now he's starting to learn narrative- one of the great hurdles of language and communication. Woo-hoo!
Its not what is sounds like. Allan and I were definitely skeptical when we saw the ads for it, but since it talked about telling stories, we decided to give it a watch and see if it would be useful. It's really a cute show, and includes some games about narrrative elements and sequence, some subtle positive messages about health and food choices, vocabulary, and everyday social situations. We were so pleased, we let Joey watch it, and he LOVES it! He's picked right up on the little games, especially the sequence ones.
A year ago, we were please to hear words coming from his mouth. Six months ago, he called me "momma" for the first time. Now he's starting to learn narrative- one of the great hurdles of language and communication. Woo-hoo!
Monday, May 15, 2006
The Today Show
This morning the Today Show had a segment on an autistic child- more of an update on a child they've been reporting on. The child gets ABA, speech therapy, occupational therapy, special ed preschool, and about an hour a day in a regular preschool- he seemed to have a paraprofessional with him.
Its was a good segment, better than the normal "what is autism?" segments you see, because it shows these kids respond to therapies, and presented the therapies that were working for the child. It also did not even try to answer the question of cause, which I found very nice.
The fact that our school system does not have paraprofessionals for their inclusion classrooms is very disturbing. This leaves it up to each parent to request one for their child's IEP. Requesting anything for an IEP means going to war with the school- at least it always has before. Its a divide-and-conquer way of throwing away lives, and the casualities are not only our own self-worth and time, but more importantly, our children. Not just the disabled children.
Its was a good segment, better than the normal "what is autism?" segments you see, because it shows these kids respond to therapies, and presented the therapies that were working for the child. It also did not even try to answer the question of cause, which I found very nice.
The fact that our school system does not have paraprofessionals for their inclusion classrooms is very disturbing. This leaves it up to each parent to request one for their child's IEP. Requesting anything for an IEP means going to war with the school- at least it always has before. Its a divide-and-conquer way of throwing away lives, and the casualities are not only our own self-worth and time, but more importantly, our children. Not just the disabled children.
Thursday, May 11, 2006
Thimerasol Fascists
OK, this is my peeve of the day: thimerasol fascists.
When one is dealing with other parents of children with autism, you find a large pool of people who are depressed, in shock, in disbelief, scared, worried, exhausted (both physically and emotionally), angry (or as my son would insist, "furious"), and generally in not good shape. And those are the folks who have been dealing with this for a while- the people who are just getting into this with this diagnosis are in worse shape. You end up meeting a lot of people who insist that what happened to their child and what works for their child is what happened to and will work for your child. Unfortunately, some of these things are not useful for Joey, would be dangerous, or are simply bogus in the first place.
I can understand wanting to DO SOMETHING. That is one of my mechanisms for coping, too. When the doctors are telling you to try medicines, diets, shots, exercises, therapies... you try them. I can also understand wanting to share strategies that work for your child with other parents. That's very kind and helpful, and a compassion for other people. But I do not understand people who not only insist you do what they do, or believe what they believe, or experience what they experience, but get downright ugly about it when you don't.
The worst of these for today are the thimerasol fascists. These are the people who believe that thimerasol is to blame for autism. Thimerasol is a preservative that is/was used in vaccinations, and it contains a type of mercury that drug companies insist is harmless (as opposed to the kind that makes you Mad as a Hatter). Personally, I think anyone who thinks putting mercury into a child's system is a good idea is just plain nuts. Even if is was safe to do, most folks don't know there are different kinds of mercury, and the perception of danger alone would be enough for me to question its use. However, I seriously doubt it is safe. It is still used for flu vaccinations.
However, I knew thimerasol was bad news when I was pregnant. Joey has never had any. NEVER. NONE. He never had a flu shot, because he's allergic to eggs. My doctor and I discussed the problem and she had stopped using vaccines with thimerasol in them before Joey was born. Thimerasol did not cause Joey's autism.
Thimerasol fascists don't seem to care about Joey's lack of exposure. To them, thimerasol is the problem, the rest of us be damned. I'm not saying thimerasol isn't a problem. I'm not saying that mercury exposure is not a cause of autism. I'm not saying there doesn't need to be a push to end its use. I'm just saying it isn't the only cause. We need to look at all the causes of autism, all the strategies for treating it, and do what needs to be done for our children- ALL of our children. Research needs to explore not only thimerasol and mercury poisoning, but other possibilities- genetic problems, other environmental factors, even possible causes during pregnancy.
Thimerasol fascists are closely following on my peeve list with Diet Fascists (who insist that ALL autistic children need to gluten and casein free), ABA Fascists (and Joey gets ABA therapy, so I know it works for us- but for everyone? I'm not convinced), and Medicine Fascists (sorry, Joey is not on any medications for his autism. He doesn't need any.). If these things work for you, then fabulous! I'm glad for you! But getting nasty when I say Joey is not in 40 hours of ABA therapy per week, eats bread and cheese, and doesn't take any medicines is really not necessary. Honestly. He's my kid, and I'll do what works for HIM.
When one is dealing with other parents of children with autism, you find a large pool of people who are depressed, in shock, in disbelief, scared, worried, exhausted (both physically and emotionally), angry (or as my son would insist, "furious"), and generally in not good shape. And those are the folks who have been dealing with this for a while- the people who are just getting into this with this diagnosis are in worse shape. You end up meeting a lot of people who insist that what happened to their child and what works for their child is what happened to and will work for your child. Unfortunately, some of these things are not useful for Joey, would be dangerous, or are simply bogus in the first place.
I can understand wanting to DO SOMETHING. That is one of my mechanisms for coping, too. When the doctors are telling you to try medicines, diets, shots, exercises, therapies... you try them. I can also understand wanting to share strategies that work for your child with other parents. That's very kind and helpful, and a compassion for other people. But I do not understand people who not only insist you do what they do, or believe what they believe, or experience what they experience, but get downright ugly about it when you don't.
The worst of these for today are the thimerasol fascists. These are the people who believe that thimerasol is to blame for autism. Thimerasol is a preservative that is/was used in vaccinations, and it contains a type of mercury that drug companies insist is harmless (as opposed to the kind that makes you Mad as a Hatter). Personally, I think anyone who thinks putting mercury into a child's system is a good idea is just plain nuts. Even if is was safe to do, most folks don't know there are different kinds of mercury, and the perception of danger alone would be enough for me to question its use. However, I seriously doubt it is safe. It is still used for flu vaccinations.
However, I knew thimerasol was bad news when I was pregnant. Joey has never had any. NEVER. NONE. He never had a flu shot, because he's allergic to eggs. My doctor and I discussed the problem and she had stopped using vaccines with thimerasol in them before Joey was born. Thimerasol did not cause Joey's autism.
Thimerasol fascists don't seem to care about Joey's lack of exposure. To them, thimerasol is the problem, the rest of us be damned. I'm not saying thimerasol isn't a problem. I'm not saying that mercury exposure is not a cause of autism. I'm not saying there doesn't need to be a push to end its use. I'm just saying it isn't the only cause. We need to look at all the causes of autism, all the strategies for treating it, and do what needs to be done for our children- ALL of our children. Research needs to explore not only thimerasol and mercury poisoning, but other possibilities- genetic problems, other environmental factors, even possible causes during pregnancy.
Thimerasol fascists are closely following on my peeve list with Diet Fascists (who insist that ALL autistic children need to gluten and casein free), ABA Fascists (and Joey gets ABA therapy, so I know it works for us- but for everyone? I'm not convinced), and Medicine Fascists (sorry, Joey is not on any medications for his autism. He doesn't need any.). If these things work for you, then fabulous! I'm glad for you! But getting nasty when I say Joey is not in 40 hours of ABA therapy per week, eats bread and cheese, and doesn't take any medicines is really not necessary. Honestly. He's my kid, and I'll do what works for HIM.
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