Usually on Saturday evening, Joey and I saunter over to the church to listen to the band. Joey likes music, especially involving drums and guitars, and since there arent a lot of people at the Saurday service, it gives us a chance to get hi used to the sanctuary and going to church and stuff without having too many people jostling him and making him nervous.
But tonight he would not sit down. Even when they started, all he could do was track, track,track. Track the banister, track the pews, track the cords for the guitars, track a seam in the carpet. Then he wanted to run out to the street, out into the halls, up and down the main aisle. Track. track, track.
This means one thing:
Joey is coming down with something.
This is really depressing, because we just finished a round of antibiotics because he had never recovered from teh croup. It means if he goes to Sunday school tomorrow, he will probably have a bad day and need the director to come be the aide again. We might not go at all, trying to head off the storm. He's already missed a week of school, so his schedule has already been a complete mess.
On a more selfish note, it also means I didn't get to sit with him for the half-hour to listen to the music while hugging a Boy- something I really could have used this week.
Saturday, April 28, 2007
A Reminder!
May 1 is "Blogging Against Disablism Day." Let's all raise the call that people with disabilities are, first and foremost, people. I look forward to spending a lot of time online on Tuesday, reading everybody's thoughts and ideas about what it really means to be human- for everyone.
Friday, April 27, 2007
Who are these people, and what did they do with my IEP team?
Mom and I walked in to the strangest IEP meeting I have ever been to. This was the meeting for Extended School Year (summer services). These meetings have been a right royal fight for everyone here every year. Usually its a lot of wrangling to even be able to call a school person for advice at any point, and they complain as they fill out the paperwork.
Not this year.
Apparently, Joey's behaviors have been unavoidable this year. He's not a danger, but the slamming fo doors, clicking, and tracking have apparently been well noted and been very disrupting. It was decided that he qualified on that ground alone. I was shocked. Not only did he qualify, but I have a peice of paper here that says he will get 2.75-3.5 hours per day, five days a week, for eight weeks! I know th edoc wants 25 hours a week, but folks, this much ESY is UNHEARD OF here.
I have heard there are at least three other parents headed to mediation right now. I wonder if that has a bearing. OR maybe someone wants to try to put together a real summer program, and this gives them an excuse. Or maybe the immanent retirement of our esteemed director of special ed. Or maybe someone finally told these people to shut thir mouths and open their brains. Joey's teacher even stood up to our mouthy OT. It was incredible. I was beside myself.
So we have the documents. We're hoping to pin down the exact nature of the program before we put our names to it. We know the amount of time, the duration, that sort of thing, but what exactly will this be? The camps I want, or an in-house program? We made clear that we need to know soon, so I can reserve spaces.
Not this year.
Apparently, Joey's behaviors have been unavoidable this year. He's not a danger, but the slamming fo doors, clicking, and tracking have apparently been well noted and been very disrupting. It was decided that he qualified on that ground alone. I was shocked. Not only did he qualify, but I have a peice of paper here that says he will get 2.75-3.5 hours per day, five days a week, for eight weeks! I know th edoc wants 25 hours a week, but folks, this much ESY is UNHEARD OF here.
I have heard there are at least three other parents headed to mediation right now. I wonder if that has a bearing. OR maybe someone wants to try to put together a real summer program, and this gives them an excuse. Or maybe the immanent retirement of our esteemed director of special ed. Or maybe someone finally told these people to shut thir mouths and open their brains. Joey's teacher even stood up to our mouthy OT. It was incredible. I was beside myself.
So we have the documents. We're hoping to pin down the exact nature of the program before we put our names to it. We know the amount of time, the duration, that sort of thing, but what exactly will this be? The camps I want, or an in-house program? We made clear that we need to know soon, so I can reserve spaces.
Thursday, April 26, 2007
Life is like a bowl of cherries
I don't get much sleep in the week before an IEP meeting. Even with one like this, where I have a plan, I get insomnia. When I get insomnia, I often end up with bad analogies and t-shirt slogans. Then I torture you with them. ;)
This one is "what its like to wok with our school OT.” I know disease references might seem offensive to some folks, but they do get across the sense of importance of the situation.
You're sick, and you suspect there may be something wrong with your endocrine system. There is only one endocrinologist covered by your insurance, so off you go. He does some tests, and tells you that you have diabetes. When you look at the results of the tests, they look bad, and you start some treatment for diabetes.
After a year, your test results come back with slightly better sugar numbers- let's say, 250, when you now know you're supposed to be under 90; but its better than the 300 you were. After a small lecture on how painful needles can be and the risks of insulin, you start a little insulin. In the meantime, another doctor you're seeing for a skin rash looks at your records and suggests you see an out-of-network endocrinologist who specializes in diabetes (note- for those of you unfamiliar with diabetes, you can get a skin rash if your sugar gets too high). Doubtful that there is much else to be done, because the doctor has been telling you that everything necessary is being done, you decide it can't hurt to have a second opinion.
To your shock, you are told that yes, you have diabetes... and pancreatic cancer. As you look over the tests, including one that most endocrinologists consider standard, but your other doctor didn't even do, it is practically staring you in the face.
Your other doctor remains skeptical, so you decide to get a third opinion. That also comes back screaming "pancreatic cancer!" (which would, of course, explain why you're diabetic). You take these reports back to your doctor, and note that both of the other endocrinologists recommend cancer treatments. Your doctor replies with bringing you some literature about cancer treatments, while telling you that these treatments are all extremely painful and risky, and you *could* try them, but why bother? Your sugar is improving with the treatment you are getting, and its the diabetes that needs to be controlled. You insist on at least some treatment for some of your other symptoms that have been revealed by the other testing, and to get your sugars under control. The doctor reluctantly gives you an increase in insulin.
In the meantime, not being an idiot, you begin cancer treatment with one of the other doctors. In trying to get your sugars under control, the new doctor suggests you might want to eat certain kinds of foods that are low in sugar. You take this to your first doctor. They freak out. They tell you that you need carbohydrates in your diet. They scream something about Atkins and South Beach diets. They tell you the cafeteria can't handle this particular request because of dietary rules. You note that the new diet seems to be helping to control your sugar, so they contact your second doctor and ask them to change their recommendation. Needless to say, doctor #2 is highly offended, and responds that dietary control of diabetes is extremely common, and her first duty is to her client, not convenience. The first doctor permits the diet, but still tells you they don't like it and you should eat plenty of carbs. You go to their boss. That boss tells you no one has ever complained about the endocrinologist, and he has to be able to treat pancreatic cancer, because the law says so, and when the boss talked to the doc, the doc seemed very enthusiatic about the new diet. He won't pay for the treatment you've been receiving from the other doctor, period.
It has now been another six months, trying to get this all in place. You first doctor does some tests without your knowledge. At your next appointment, he presents the results, saying, "You're are now doing so well on the insulin... wow, 100! You may not need that insulin anymore! And look! Your cancer has been cured!"
And I'm supposed to have confidence in this person?
This one is "what its like to wok with our school OT.” I know disease references might seem offensive to some folks, but they do get across the sense of importance of the situation.
You're sick, and you suspect there may be something wrong with your endocrine system. There is only one endocrinologist covered by your insurance, so off you go. He does some tests, and tells you that you have diabetes. When you look at the results of the tests, they look bad, and you start some treatment for diabetes.
After a year, your test results come back with slightly better sugar numbers- let's say, 250, when you now know you're supposed to be under 90; but its better than the 300 you were. After a small lecture on how painful needles can be and the risks of insulin, you start a little insulin. In the meantime, another doctor you're seeing for a skin rash looks at your records and suggests you see an out-of-network endocrinologist who specializes in diabetes (note- for those of you unfamiliar with diabetes, you can get a skin rash if your sugar gets too high). Doubtful that there is much else to be done, because the doctor has been telling you that everything necessary is being done, you decide it can't hurt to have a second opinion.
To your shock, you are told that yes, you have diabetes... and pancreatic cancer. As you look over the tests, including one that most endocrinologists consider standard, but your other doctor didn't even do, it is practically staring you in the face.
Your other doctor remains skeptical, so you decide to get a third opinion. That also comes back screaming "pancreatic cancer!" (which would, of course, explain why you're diabetic). You take these reports back to your doctor, and note that both of the other endocrinologists recommend cancer treatments. Your doctor replies with bringing you some literature about cancer treatments, while telling you that these treatments are all extremely painful and risky, and you *could* try them, but why bother? Your sugar is improving with the treatment you are getting, and its the diabetes that needs to be controlled. You insist on at least some treatment for some of your other symptoms that have been revealed by the other testing, and to get your sugars under control. The doctor reluctantly gives you an increase in insulin.
In the meantime, not being an idiot, you begin cancer treatment with one of the other doctors. In trying to get your sugars under control, the new doctor suggests you might want to eat certain kinds of foods that are low in sugar. You take this to your first doctor. They freak out. They tell you that you need carbohydrates in your diet. They scream something about Atkins and South Beach diets. They tell you the cafeteria can't handle this particular request because of dietary rules. You note that the new diet seems to be helping to control your sugar, so they contact your second doctor and ask them to change their recommendation. Needless to say, doctor #2 is highly offended, and responds that dietary control of diabetes is extremely common, and her first duty is to her client, not convenience. The first doctor permits the diet, but still tells you they don't like it and you should eat plenty of carbs. You go to their boss. That boss tells you no one has ever complained about the endocrinologist, and he has to be able to treat pancreatic cancer, because the law says so, and when the boss talked to the doc, the doc seemed very enthusiatic about the new diet. He won't pay for the treatment you've been receiving from the other doctor, period.
It has now been another six months, trying to get this all in place. You first doctor does some tests without your knowledge. At your next appointment, he presents the results, saying, "You're are now doing so well on the insulin... wow, 100! You may not need that insulin anymore! And look! Your cancer has been cured!"
And I'm supposed to have confidence in this person?
Wednesday, April 25, 2007
Round 2
Oh, yes, I got the email this morning: "I didn't say that! I said we have to be careful interpreting the results!"
Right. Does that mean you don't show care in interpreting the results of other tests and evaluations?
This is NOT increasing my confidence in this woman. It certainly shows me that she is 1. Not familiar with this test and 2. not familiar with how to properly consider the results. She's surprised that we would want to know this information, to look for gaps in Joey's skills. Why on earth would we want to know this information?
I thought we were about to write an IEP?
Right. Does that mean you don't show care in interpreting the results of other tests and evaluations?
This is NOT increasing my confidence in this woman. It certainly shows me that she is 1. Not familiar with this test and 2. not familiar with how to properly consider the results. She's surprised that we would want to know this information, to look for gaps in Joey's skills. Why on earth would we want to know this information?
I thought we were about to write an IEP?
Tuesday, April 24, 2007
Battles
For some reason, the school OT just can't say the words," yes, ma'm." I can only imagine it is a matter of pride. If she doesn't fight me on every single request or suggestion I make, she loses some kind of brownie point somewhere. She keeps sayign she wants to get along with me, then won't STFU.
I have requested the school evaluate Joey using ABLLS (Assessment of Basic Language and Learning Skills). It is a test designed to check on skills needed for 5-7 year-olds to function. It is commonly used to test preschoolers, to give educators a gauge of the skills needed for elementary school, including kindergarden. It also is often used to design ABA programs. It is not a comprehensive test, but it does test skills that are not covered in other common gauges, such as the LAP-D, and is designed specifically for kids (like Joey) who have language problems or delays. Back in September, I kept asking what skills Joey would need for kindergarden, and was basically told "we'll take care of it." So I am already annoyed to discover there was a test they could have given him to find the gaps in his skills and address some of them. However, I am far more annoyed at the email I got from the %&$^#*! OT today. It basically says "well, he doesn't need to do all this stuff for kindergarden. It won't tell us anything his teachers don't already know. It won't give us an age equivalency or standard score. This is usually given to low-functioning kids." In other words, "What are you having us do this for? I don't want to bother."
Of course he doesn;t need it all for kindergarden. But he needs some of it, and this will tell us some of things he may be lacking. It will tell us some of his strengths as well as some of his deficits. It is a yes/no sort of thing- either he can do the skill listed, or he can't. Its not about age equivalency, it is about tracking actual mastery of actual, functional skills.
These teachers that know him so well had to be fought to get him goals for bilateral co-ordination, social conversation, and visual motor skills. They were shocked that he needs sensory accomodations. Joey is just a barrel FULL of surprises!
I asked for the test. They do it in the fall (why bother? The IEP is being written NOW). I asked for it by NAME.
The proper response is "Yes, Ma'm."
I have requested the school evaluate Joey using ABLLS (Assessment of Basic Language and Learning Skills). It is a test designed to check on skills needed for 5-7 year-olds to function. It is commonly used to test preschoolers, to give educators a gauge of the skills needed for elementary school, including kindergarden. It also is often used to design ABA programs. It is not a comprehensive test, but it does test skills that are not covered in other common gauges, such as the LAP-D, and is designed specifically for kids (like Joey) who have language problems or delays. Back in September, I kept asking what skills Joey would need for kindergarden, and was basically told "we'll take care of it." So I am already annoyed to discover there was a test they could have given him to find the gaps in his skills and address some of them. However, I am far more annoyed at the email I got from the %&$^#*! OT today. It basically says "well, he doesn't need to do all this stuff for kindergarden. It won't tell us anything his teachers don't already know. It won't give us an age equivalency or standard score. This is usually given to low-functioning kids." In other words, "What are you having us do this for? I don't want to bother."
Of course he doesn;t need it all for kindergarden. But he needs some of it, and this will tell us some of things he may be lacking. It will tell us some of his strengths as well as some of his deficits. It is a yes/no sort of thing- either he can do the skill listed, or he can't. Its not about age equivalency, it is about tracking actual mastery of actual, functional skills.
These teachers that know him so well had to be fought to get him goals for bilateral co-ordination, social conversation, and visual motor skills. They were shocked that he needs sensory accomodations. Joey is just a barrel FULL of surprises!
I asked for the test. They do it in the fall (why bother? The IEP is being written NOW). I asked for it by NAME.
The proper response is "Yes, Ma'm."
Saturday, April 21, 2007
Red blocks
Joey loves blocks. Megablocks are especially wonderful things. He doesn't build with them. He carries them around. The Megablocks have larger "pegs" like big circles, and he likes to count them. The line-blocks, with three or four of these pegs in a straight row, are the blocks he loves. The rest rot in the toybox (Andy has already moved on to Duplos).
I work on Saturdays. I actually work three jobs, as I teach two places as well, one online and one live. the live class only comes around every couple of years, but I do love it when I have one. The online classes are just OK. Too many students think that having an online course is a lisence to sass the professor or skip the work. Anyway, that's not what I do on Saturdays. On Saturdays, I hole up in my bedroom, in my hubby's oversized recliner, with a computer in my lap, and score GRE writing assessments. (No, I can't tutor anybody, its against my contract. No, I can't grade your essay, its all automated and I have no control over which essays I get. Its all standardized, anyway, so it wouldn't effect your score). On breaks, I do weird stuff like write blog entries and change bedsheets. Its a pretty good deal. Sometimes I even stay in my pajamas for the morning (I'm weird, I like to be dressed).
So I am sitting here, holed up for the day in my comfy chair, when a little face appears at teh door.
The idea of letting the boys come up the stairs without escort is new for us. Joey's motor planning is usually so poor that stairs were a major source of concern and falls. Andy is better, but still, he's not yet 3 years old, and we want to know what he's DOING up here. My house is not exactly clean and neat, and there is plenty of trouble to be found. So much for childproofing.
The other problem with independent stair climbing is that Joey has trouble remember what he came upstairs for, and then just wanders about the upstairs, and finally melts down, because he knows he came up here for something, but what was it? I can sympathize with the frustration there, it happens to me all the time since I was pregnant. If anybody needs anecdotal evicdence that pregnancy causes brain damage, I'm your girl.
So here I am, and aroun the corner comes a little face. "Hi Joey," I say brightly, wondering where Dad is.
"Red four?" he replies in a hopeful question. I'm stunned. He came up the stairs, and knows exactly what he wants. And better yet, I happen to know he left his red blocks- a four and a three, his usual set- right here on the chair. HE knew which room he wanted andd everything!
"Do you want your red blocks?" I ask, to encourage speech.
"Red blocks." Red is Joey's current favorite color. Everything has to be red. I produce the required booty, and the little face lights up. "RED blocks! Thank you!" He fetches them from my hand with a kiss, and is gone.
My baby is growing up.
I work on Saturdays. I actually work three jobs, as I teach two places as well, one online and one live. the live class only comes around every couple of years, but I do love it when I have one. The online classes are just OK. Too many students think that having an online course is a lisence to sass the professor or skip the work. Anyway, that's not what I do on Saturdays. On Saturdays, I hole up in my bedroom, in my hubby's oversized recliner, with a computer in my lap, and score GRE writing assessments. (No, I can't tutor anybody, its against my contract. No, I can't grade your essay, its all automated and I have no control over which essays I get. Its all standardized, anyway, so it wouldn't effect your score). On breaks, I do weird stuff like write blog entries and change bedsheets. Its a pretty good deal. Sometimes I even stay in my pajamas for the morning (I'm weird, I like to be dressed).
So I am sitting here, holed up for the day in my comfy chair, when a little face appears at teh door.
The idea of letting the boys come up the stairs without escort is new for us. Joey's motor planning is usually so poor that stairs were a major source of concern and falls. Andy is better, but still, he's not yet 3 years old, and we want to know what he's DOING up here. My house is not exactly clean and neat, and there is plenty of trouble to be found. So much for childproofing.
The other problem with independent stair climbing is that Joey has trouble remember what he came upstairs for, and then just wanders about the upstairs, and finally melts down, because he knows he came up here for something, but what was it? I can sympathize with the frustration there, it happens to me all the time since I was pregnant. If anybody needs anecdotal evicdence that pregnancy causes brain damage, I'm your girl.
So here I am, and aroun the corner comes a little face. "Hi Joey," I say brightly, wondering where Dad is.
"Red four?" he replies in a hopeful question. I'm stunned. He came up the stairs, and knows exactly what he wants. And better yet, I happen to know he left his red blocks- a four and a three, his usual set- right here on the chair. HE knew which room he wanted andd everything!
"Do you want your red blocks?" I ask, to encourage speech.
"Red blocks." Red is Joey's current favorite color. Everything has to be red. I produce the required booty, and the little face lights up. "RED blocks! Thank you!" He fetches them from my hand with a kiss, and is gone.
My baby is growing up.
Friday, April 20, 2007
Sympathetic Response
I have been having a very strange problem lately. I have been having trouble with filtering and processing sound. I've always had trouble with TVs and being tired- if I'm tired, and you want to talk to me, turn the TV off, or I can't even hear you. But now its like I can't do it at all. If I'm in a room and there are other conversations going, I can't even hear the person speaking to me, and often find I have looked away- even when I know I am being spoken to. It happened today. Miss Carrie, one of our speech therapists, was giving me the latest results from an evaluation she had just completed. I know she was talking to me. I can even tell you some of the words that emerged from her mouth. But all I could hear were the boys, and suddenly I realized I missed the conversation, perhaps she had asked me a question? She was now asking me if I was nervous. About what? Whether Joey was apraxic? About the possibility that even this diagnosis wouldn't get the medical insurance to kick in something? I don;t think it was connected to what I hadn't heard, though. I think she had just noticed I wasn't there anymore. I feel terrible about it, too, because I'm sure it seems rude for me not to focus on her when she's telling me important stuff, and has lengthened her day by an hour to test him for us, and all. I need to do something really nice to thank this person, she really is bending over backwards to help us, and not many people are doing that these days.
But in the meantime, I am definitely seeing an increase in this kind of occurance. One part of me wonders if this is what happens to Joey when he can't focus on a task- because I can't even really tell you where my mind was, I just snapped back and realized it wasn't focusing on what it should have been focusing on. Another part worries if there is something changing, or if this is just a sympathetic sort of response- I am either noticing these things more because I know more about the problems Joey may be facing and autism generally, or they are occuring more as a psychosomatic response to Joey being autistic, and the stress of fighting with the very people who are supposed to be helping us, the "school folk." Or am I just getting old, and this is part of that? Or am I suffering some form of exhaustion, and need to see somebody? Because it really needs to stop. And if this is what its like to be Joey, then I definitely need to help. I worry about it happening when I'm driving. Will I tune out of teh road in favor of the boys, or the radio, or the trees passing by? That would be Not Good.
But in the meantime, I am definitely seeing an increase in this kind of occurance. One part of me wonders if this is what happens to Joey when he can't focus on a task- because I can't even really tell you where my mind was, I just snapped back and realized it wasn't focusing on what it should have been focusing on. Another part worries if there is something changing, or if this is just a sympathetic sort of response- I am either noticing these things more because I know more about the problems Joey may be facing and autism generally, or they are occuring more as a psychosomatic response to Joey being autistic, and the stress of fighting with the very people who are supposed to be helping us, the "school folk." Or am I just getting old, and this is part of that? Or am I suffering some form of exhaustion, and need to see somebody? Because it really needs to stop. And if this is what its like to be Joey, then I definitely need to help. I worry about it happening when I'm driving. Will I tune out of teh road in favor of the boys, or the radio, or the trees passing by? That would be Not Good.
Thursday, April 19, 2007
The Parent Role at an IEP meeting
As I send off my latest request for an IEP meeting, I just had a very sad thought.
Being a parent at an IEP meeting is kind of like being a passesnger on a plane. You are part of the team inteded to result in a pleasant flight, by making sure everything is groovy, and stays groovy, from teh time you get on to the time you get off. Included in this team are the pilots, the attendants, the mechanical crews, the air trafic crontrol folks... you get the idea.
Normal, reasonable people know that when come onto the plane, you make sure your luggage fits in the overhead bins or under teh seat in front of you. If you need a seatbelt extender, you request one. You stay seated when the stay seated light is on. You ake sure smoking is not done in the bathrooms, your food and beverage choices are made reasonably, and thus the flight goes smoothly. You need to have a general idea of how the emergency exits work in case there is a problem.
However, on an IEP Flight, you as the passenger are also expected to understand how to fly the plane, serve the other passengers, and have full knowledge of how to maintain and even fix mechanical and other problems mid-flight. If an engine falls off, you're expected to know how to safely land the plane, re-attach the engine, and get the whole mess back in the air. The pilot won't set course or work the instruments unless you spefically request that s/he do so, and then often says they don't have the resources for working the controls anyway, and besides, do you really NEED to work all those buttons, levers, and gauges? Can't you see fron the windshield where you are going? When you go to find resources to help, you find a flight simulator; but you soon find it is either for an outdated cockpit, a simplified cockpit, or when you go to actually request the controls be worked properly, you are told that you just had simulator training, the pilot has had real flight time! So you try to sign up for flying lessons. Now you're told that you're still just an amateur. But they still won't work the controls unless you specifically ask them to do so, and say exactly what to do nd exactly when.
Oh, and your flight is already departing from the gate. And if you dont do all of this correctly, of course you will crash. Oh well, sucks to be you.
Being a parent at an IEP meeting is kind of like being a passesnger on a plane. You are part of the team inteded to result in a pleasant flight, by making sure everything is groovy, and stays groovy, from teh time you get on to the time you get off. Included in this team are the pilots, the attendants, the mechanical crews, the air trafic crontrol folks... you get the idea.
Normal, reasonable people know that when come onto the plane, you make sure your luggage fits in the overhead bins or under teh seat in front of you. If you need a seatbelt extender, you request one. You stay seated when the stay seated light is on. You ake sure smoking is not done in the bathrooms, your food and beverage choices are made reasonably, and thus the flight goes smoothly. You need to have a general idea of how the emergency exits work in case there is a problem.
However, on an IEP Flight, you as the passenger are also expected to understand how to fly the plane, serve the other passengers, and have full knowledge of how to maintain and even fix mechanical and other problems mid-flight. If an engine falls off, you're expected to know how to safely land the plane, re-attach the engine, and get the whole mess back in the air. The pilot won't set course or work the instruments unless you spefically request that s/he do so, and then often says they don't have the resources for working the controls anyway, and besides, do you really NEED to work all those buttons, levers, and gauges? Can't you see fron the windshield where you are going? When you go to find resources to help, you find a flight simulator; but you soon find it is either for an outdated cockpit, a simplified cockpit, or when you go to actually request the controls be worked properly, you are told that you just had simulator training, the pilot has had real flight time! So you try to sign up for flying lessons. Now you're told that you're still just an amateur. But they still won't work the controls unless you specifically ask them to do so, and say exactly what to do nd exactly when.
Oh, and your flight is already departing from the gate. And if you dont do all of this correctly, of course you will crash. Oh well, sucks to be you.
Home Not-Alone
So Joey has now missed a week of school. We've been relaxing and trying to get him to recover from all these infections and coughs and creeping crud. A taste of summer vacation, if you will. I've caught up on my episodes of Pinky Dinky Doo, learned all the Oobi and Ply with Me Sesame games on Noggin, and made that lovely movie. I can't really go anywhere, because of Joey's problems with his antibiotics, and I can't just let them loose in teh yard because of the chilly weather (they're supposed ot be recovering from these colds, not picking up on new ones). We've pretended to be dogs, cats, cows, Space Rangers, Little Bear, Duck, dinosaurs, Little Bear pretending to be a Space Ranger, Mr. Guinea Pig, and racing cars. We've done painting, drawing, coloring, put together puzzles, played trains, played blocks, played with the play-kitchen, played with play-doh, and played with some our big fancy toys, like our Cars playset tent and our racetrack. In other words, it's been like a rainy-day week here.
What shall we do today?
I was thinking of more coloing (to go with Andy's listening therapy) followed by exploring the basement playroom, maybe getting out our tunnels. Then lunch, and storytime. Andy then has his nap, and Joey's therapies start. We have ABA, OT, and a music lesson today. Then we should get home for dinner and bed. Whew!
What shall we do today?
I was thinking of more coloing (to go with Andy's listening therapy) followed by exploring the basement playroom, maybe getting out our tunnels. Then lunch, and storytime. Andy then has his nap, and Joey's therapies start. We have ABA, OT, and a music lesson today. Then we should get home for dinner and bed. Whew!
Tuesday, April 17, 2007
Saturday, April 14, 2007
Ear infections
One thing you need when you are sick is rest. Joey appears to hae an ear infection that is resistant to Zithromax, which sucks, so we changed his antibiotic. Now if only I could get him to SIT DOWN. He has as much energy now as when he's fine! We are trying to tempt him with Oobi and Pinky Dinky Doo games on Noggin's website, but... bounce bounce bounce! IF the child would just take a NAP!
Wednesday, April 11, 2007
A Long Day
So the boy starts to stir about quarter to seven this morning, with a moan and sob, and "My ears hurt!" Just a few direct questions makes it clear- he really did just tell us not only that he is in pain, but that his ears are the specific, actual problem. Holy cow, my son can communicate with me!!!
So I pack up two little boys and head off to the Medic One, a walk-in clinic we tend to use, especially for ear infections. And bingo, we have one. Fill the scrip, give him a dose, pick up grandma, and we're off to Kluge.
Charlottesville is lovely in the spring. 270 was planted for flowey effect, and the redbuds, dogwoods, and cherry trees are in full swing. Very pretty. When we go back next month for Andy, I hope the azaleas will still be in bloom.
Anyway, nothing too new and exciting. Dr. Blackman is still nice, supportive, and very interested in Joey's progress. He wants us to work on social skills. The OT wants us to try brushing. The PT wants him able to climb into a sling-swing. The SLP says he's progressed in receptive language a full standard of deviation, so now he's just breaking into two standards of deviation, instead of being a full 3 standards of deviation behind. So he's made up some ground. We didn't test expressive, but he's about to get a full eval from our private OT anyway. We were just testing the waters. Why, I don't know. I keep calling them saying I want a full eval to get a sense of where he is, and when we get there, they're all just consult appointments. But at least I''l have some letters with "Kluge" in the letterhead saying he needs services. They'll promptly be ignored, but there you are.
We'll probably wait on teh brushing until summer. If I can't get this school OT to even give him gum, I can't see expecting her to do brushing in a supportive, appropriate way. After all, when it was mentioned before, she blew it off as "too difficult, too time-consuming." If it works, what's a little time?
So I pack up two little boys and head off to the Medic One, a walk-in clinic we tend to use, especially for ear infections. And bingo, we have one. Fill the scrip, give him a dose, pick up grandma, and we're off to Kluge.
Charlottesville is lovely in the spring. 270 was planted for flowey effect, and the redbuds, dogwoods, and cherry trees are in full swing. Very pretty. When we go back next month for Andy, I hope the azaleas will still be in bloom.
Anyway, nothing too new and exciting. Dr. Blackman is still nice, supportive, and very interested in Joey's progress. He wants us to work on social skills. The OT wants us to try brushing. The PT wants him able to climb into a sling-swing. The SLP says he's progressed in receptive language a full standard of deviation, so now he's just breaking into two standards of deviation, instead of being a full 3 standards of deviation behind. So he's made up some ground. We didn't test expressive, but he's about to get a full eval from our private OT anyway. We were just testing the waters. Why, I don't know. I keep calling them saying I want a full eval to get a sense of where he is, and when we get there, they're all just consult appointments. But at least I''l have some letters with "Kluge" in the letterhead saying he needs services. They'll promptly be ignored, but there you are.
We'll probably wait on teh brushing until summer. If I can't get this school OT to even give him gum, I can't see expecting her to do brushing in a supportive, appropriate way. After all, when it was mentioned before, she blew it off as "too difficult, too time-consuming." If it works, what's a little time?
Tuesday, April 10, 2007
RED
Today, Joey is five years old! Happy Birthday, Buddha Buddy!
So he got up this morning, and started rummaging through the clean clothes (which tend to sit in the hall with the washer and dryer, rather than being folded and put away in a timely manner). When I asked him what he needed, he said "Red one! I want a red shirt!"
Allow me to stop and pick up my teeth from the floor. He responded to me... in a sentence... expressing a preference. My Joey! What a great birthday present!!!
After a good deal of rummaging, we did finally find a red shirt. I was surprised he didn't have several, usually we have a variety of long-sleeve t-shirts from teh Lands' End Overstocks, but apparently they are all size 6, and have been passed down to Andy, and got mostly replaced by blue and orange shirts (the red ones must not have been on sale). But I finally found one that fit him, and all was groovy. I got him dressed, and started on Andy, who wanted his favorite dinosaur shirt this morning.
Joey started down teh stairs.
Last night, I prepared for the Birthday Morning by setting up a playtent in teh livingroom, and arranging his presents. So as I am dressing Andy, Joey starts down the stairs, and sees teh tent, and says, "Oh! Nice surprise!"
I could have cried.
This burst of verbal-ness is actually something of a shock. It started when he was put on the oxygen during our Croup Crisis a couple weeks ago. He's been using sentences ever since. We know Joey does these burst-breakthroughs, but to have it coincide so perfectly with the oxygen and steroids (he was put on steroids for the croup) is just strange. It was so dramatic, I'm going to have him checked again for allergies, since this steroid helps stem allergic reactions.
Tomorrow is Kluge Day. I don't expect to learn much new, but just to document where we are. I'll keep everybody posted. :)
So he got up this morning, and started rummaging through the clean clothes (which tend to sit in the hall with the washer and dryer, rather than being folded and put away in a timely manner). When I asked him what he needed, he said "Red one! I want a red shirt!"
Allow me to stop and pick up my teeth from the floor. He responded to me... in a sentence... expressing a preference. My Joey! What a great birthday present!!!
After a good deal of rummaging, we did finally find a red shirt. I was surprised he didn't have several, usually we have a variety of long-sleeve t-shirts from teh Lands' End Overstocks, but apparently they are all size 6, and have been passed down to Andy, and got mostly replaced by blue and orange shirts (the red ones must not have been on sale). But I finally found one that fit him, and all was groovy. I got him dressed, and started on Andy, who wanted his favorite dinosaur shirt this morning.
Joey started down teh stairs.
Last night, I prepared for the Birthday Morning by setting up a playtent in teh livingroom, and arranging his presents. So as I am dressing Andy, Joey starts down the stairs, and sees teh tent, and says, "Oh! Nice surprise!"
I could have cried.
This burst of verbal-ness is actually something of a shock. It started when he was put on the oxygen during our Croup Crisis a couple weeks ago. He's been using sentences ever since. We know Joey does these burst-breakthroughs, but to have it coincide so perfectly with the oxygen and steroids (he was put on steroids for the croup) is just strange. It was so dramatic, I'm going to have him checked again for allergies, since this steroid helps stem allergic reactions.
Tomorrow is Kluge Day. I don't expect to learn much new, but just to document where we are. I'll keep everybody posted. :)
Monday, April 09, 2007
Andy
I don't usually say much about Andy here. This blog mostly focuses on autism, and my autistic son. However, today was an Andy Day, and there are clouds on the horizon.
We have Andy doing something called Therapeutic Listening. Its one of those therapies that sounds like a duck, but it can't hurt him, so why not try it? Andy, like me, is highly sensitive to sound, and appears to have some other sensory issues going on that make him dislike crowds, avoid too many people at once (even familiar ones), and get very, very grumpy. He also has been doign a lot more toe-walking. He doesn't appear to be autistic, but appearances? What would I know? We've got an appointment for Dr. Blakcman to give him a look-see in May. In the meantime, we have the Listening. He listens to modulated music for 30 minutes, twice a day. It actually seems to be helping, as he will now listen ot the music on a normal volume (at first, I couldn't even hear it and he would pitch a fit), and will do a single activity for the half-hour, such as playing with playdough or doing puzzles. Who knew?
My private OT.
Anyway, we're also trying to do a general eval, and that is much harder. Andy has a lot of trouble following instructions, espceially from strangers (he does just OK at home). He seems to be doing something very strange- his skills set is all over the place, making the test nearly impossible to score. The joys of standardization. In the meantime, the speech therapist took a look at him. He's having some trouble with articulation. His language use seems to be ok, but understanding what he's saying can be next to impossible. We're going to see if the insurance will cover an eval and therapy for him. Then we shall see what we shall see.
I really don't want him in teh hands of the special ed folks. That's just won't do.
We have Andy doing something called Therapeutic Listening. Its one of those therapies that sounds like a duck, but it can't hurt him, so why not try it? Andy, like me, is highly sensitive to sound, and appears to have some other sensory issues going on that make him dislike crowds, avoid too many people at once (even familiar ones), and get very, very grumpy. He also has been doign a lot more toe-walking. He doesn't appear to be autistic, but appearances? What would I know? We've got an appointment for Dr. Blakcman to give him a look-see in May. In the meantime, we have the Listening. He listens to modulated music for 30 minutes, twice a day. It actually seems to be helping, as he will now listen ot the music on a normal volume (at first, I couldn't even hear it and he would pitch a fit), and will do a single activity for the half-hour, such as playing with playdough or doing puzzles. Who knew?
My private OT.
Anyway, we're also trying to do a general eval, and that is much harder. Andy has a lot of trouble following instructions, espceially from strangers (he does just OK at home). He seems to be doing something very strange- his skills set is all over the place, making the test nearly impossible to score. The joys of standardization. In the meantime, the speech therapist took a look at him. He's having some trouble with articulation. His language use seems to be ok, but understanding what he's saying can be next to impossible. We're going to see if the insurance will cover an eval and therapy for him. Then we shall see what we shall see.
I really don't want him in teh hands of the special ed folks. That's just won't do.
Sunday, April 08, 2007
Easter
We had an interesting morning at church today. The church insisted on having the kids in service today, so they started the service 15 minutes early, then planne to send the kids to Sunday School after "children's time." This meant I had to have Joey in a huge crowd of people (Its EASTER, people!) and then have him sit in front of all those people and try to participate in an activity before going to Sunday school. What a great idea... not.
Fortunately, Joey performed beautifully. There were too many people in the service, so we set up camp in the vestibule. Fortunately, the nursery was open, so Andy got an extra few minutes to play. There was NO WAY he would be able to deal with that many people all at once. Joey wanted to go up and see the instruments, so we ran up the side aisle. Our service has a deaf couple with an interpreter in teh front row; Joey reached the front and the intepreter was there signing, and stopped, fascinated. He had me hold him for a while to hear and bounce to the music, and watch the signing, and he was such a happy little child. When we ran back to the vestibule, it was packed with people; no longer a quiet escape from the crowd. Yet, Joey did not meltdown; instead, he started barking like a dog and tracking the lines in the floor. We got some funny looks, but since he was managing to control himself and make himself comfy, I was prety proud of him.
So Children's Time came at last, and up we went. We sat towards the back of the crowd of children, in front of our deaf friends. The children's pastor had the kids sing a song; I wasn't familiar with it, but JOey was trying hard to sing along, so they must have been teaching it in Sunday School. Of course, his procesing problems meant he remained a verse and half behind, and he was getting frustrated; he knew the others were ahead of him. He sat in my lap and tried, though; I am SO proud of him! And then the amazing thing happened.
The deaf lady caught his attention, and was signing the song to him; and he tried to sign back, and sang along.
The whole visual thing just struck me, then and there. I know Joey is highly visual, and learns best with visual cues and aids. TV is a great boon for us. He just loves the idea of reading. He's a very visual person. But to see him able to process the visual cues so much faster, and actually keep up... I am going to spend some time this afternoon looking for signing classes. It would be such a simple way to help him keep up with the conversation, to be able to give him those visual cues. I know he'll need to get on in the world without signs, but he also will need to keep up with work and lessons, and having a way to help him not lose that ground has to be worth something.
Saturday, April 07, 2007
April Showers Bring May Flowers...
...but April snow is ridiculous. It's the day before Easter, for pity's sake! Allan says we shouldn't dye the eggs- just put them out in the snow. Instant hiding, with the addition of staying chilled.
Thursday, April 05, 2007
Parking
I live on a city street that has no posted signs about parking. It has become something of a bone of contention among the neighbors. The houe next to us has several grown children, an apartment, and two couples living there, and everyone has at least one car. We have three vehicles (two we use regularly, one is a Jeep that we have retained in case of snow and use as a truck). The other three buildings around us are all rentals- a duplex, a house, and three aparments. Guess what? they all have cars. We have a driveway. The people next door have converted their yard to a 3-space parking lot, and they have two lengths of street frontage (they are the corner lot). Yet we still have troubles.
My driveway actually parks two cars, and we used to park the Jeep in the end of it, since it wasn't used much. BUt the folks next door insisted on parking a car in front of our house. Usually, there are two spaces in front of our house, but they inisisted on parking in the middle, so that my husband had no-where to park but across the street, which seemed to us to be rude, to park in front of someone else's house all night long (it was annoying us, after all...) so we learned to park the Jeep out front. Then we had the second space that was just right for my husband's car, and we weren't being complete nuisances by blocking up the street all night long. We didn't leave nasty notes and we didn't call the police, we just parked our car. After all, it is public parking.
Now, what this means is there is no place for mom to park when she comes to help watch my little guy while I drive the other one around to therapy. And there is no-where to park for my therapists who come. They cannot park in the driveway, because I also cannot be blocked in when I have to go to teach; and my mom has a lo of trouble getting in and out of o driveway, since all of these people have large SUVs they park on the street. Besides, I would block her in when I came home, or have to park on teh streetmyself. So to the street she goes. After all, it is public parking.
The folks across the street have started leaving notes on the cars of people who come to my house, implying that it is no longer acceptable" for anyone to park in front of their house. Confused, and not a litle annoyed, I called the police to check on parking regs.
Yep, you guessed it- it is PUBLIC PARKING. As long as they are not blocking driveways, too close to the corner, too close to a hydrant, and close enough to the curb, ANYONE can park ANYWHERE along the street.
Although I have advised my folks to try to park a little bit down the street from these people, sometimes there is little choice. So I put a note on their door asking them to stop harrassing my therapists and respite workers.
I expect to have to start paying for paint jobs soon.
My driveway actually parks two cars, and we used to park the Jeep in the end of it, since it wasn't used much. BUt the folks next door insisted on parking a car in front of our house. Usually, there are two spaces in front of our house, but they inisisted on parking in the middle, so that my husband had no-where to park but across the street, which seemed to us to be rude, to park in front of someone else's house all night long (it was annoying us, after all...) so we learned to park the Jeep out front. Then we had the second space that was just right for my husband's car, and we weren't being complete nuisances by blocking up the street all night long. We didn't leave nasty notes and we didn't call the police, we just parked our car. After all, it is public parking.
Now, what this means is there is no place for mom to park when she comes to help watch my little guy while I drive the other one around to therapy. And there is no-where to park for my therapists who come. They cannot park in the driveway, because I also cannot be blocked in when I have to go to teach; and my mom has a lo of trouble getting in and out of o driveway, since all of these people have large SUVs they park on the street. Besides, I would block her in when I came home, or have to park on teh streetmyself. So to the street she goes. After all, it is public parking.
The folks across the street have started leaving notes on the cars of people who come to my house, implying that it is no longer acceptable" for anyone to park in front of their house. Confused, and not a litle annoyed, I called the police to check on parking regs.
Yep, you guessed it- it is PUBLIC PARKING. As long as they are not blocking driveways, too close to the corner, too close to a hydrant, and close enough to the curb, ANYONE can park ANYWHERE along the street.
Although I have advised my folks to try to park a little bit down the street from these people, sometimes there is little choice. So I put a note on their door asking them to stop harrassing my therapists and respite workers.
I expect to have to start paying for paint jobs soon.
Wednesday, April 04, 2007
Morning Meeting
So I survived the meeting with the school OT. There were severa snide comments made that I could have replied to in a nasty way, and made everything unpleasant, but I was too chicken. Bok bok. Besides, what would it accomplish? I didn't have a tape recorder. I hope I made my position clear: I am not out to "cure" Joey, but I expect the school- and her- to help support him so he can function in a world that is not friendly to autistic living.
Note to school people: here are some comments to steer clear from when you are dealing with a parent who is already upset:
"Gee, you seem so good at research and know so much, I thought you knew everything! I'm always taken aback when there is a hole in your knowledge!"
What the parent hears: "You're a know-it-all. I'm not going to help your kid. You do it."
"We're not against sensory integration. I've set up a sensory room [here] and [here] and I helped set up the one in Joey's classroom!"
What the parent hears: "Now that you complained, I'm doing the minimum I've been told to do so you can't sue us."
"You know, sensory integration won't cure Joey."
No shit, Sherlock. How many presentations have you been to where I explicitly state, "Autism is not cure-able, but it is treatable. We want to help Joey function in a non-autsitic world."? So what I hear is: "I haven't listened to a word you've said."
In the end, I think maybe I ought to go back to school. I need some coursework in OT, Speech, and development. These people are NOT going to help us.
Note to school people: here are some comments to steer clear from when you are dealing with a parent who is already upset:
"Gee, you seem so good at research and know so much, I thought you knew everything! I'm always taken aback when there is a hole in your knowledge!"
What the parent hears: "You're a know-it-all. I'm not going to help your kid. You do it."
"We're not against sensory integration. I've set up a sensory room [here] and [here] and I helped set up the one in Joey's classroom!"
What the parent hears: "Now that you complained, I'm doing the minimum I've been told to do so you can't sue us."
"You know, sensory integration won't cure Joey."
No shit, Sherlock. How many presentations have you been to where I explicitly state, "Autism is not cure-able, but it is treatable. We want to help Joey function in a non-autsitic world."? So what I hear is: "I haven't listened to a word you've said."
In the end, I think maybe I ought to go back to school. I need some coursework in OT, Speech, and development. These people are NOT going to help us.
Tuesday, April 03, 2007
K-I-D... spells... kid!
Joey's favorite toy this minute is a leapfrog phonics writing thing. We haven't been too worried about it up to now. He likes letters, it is comforting for him, and he's been learning to write letters, spell words, and make sounds. the words are the funniest. It has a setting where you can spell out three-letter words, and if it is a word, the toy tells you the word and praises you (K...I...D... spells... Kid! Great job!) When Joey, pressing random letters, discovers not only a word, but a word he knows, he just beams with delight. D-O-G! Dog! Wow!
The problem is that he is starting to perseverate on it. Instead of doing his work, he is echoing the toy. Instead of participating in class, he echoes the toy. Instead of interacting with the world around him, he echoes the toy.
Hence the seeking of a doctor yesterday. Is he uncomfortable, maybe sick? Is he using this toy to comfort himself because he is uncomfortable, unhappy, afraid? Is there something wrong at school? Are we doing something that is making him want t retreat into reciting, echoing, letters? With all the advances he has made, he still can't tell us. He thinks the question "Are you OK?" is, without fail, "I'm OK." Its a form... and increasingly boring one... not communication.
I meet with the school OT in the morning. I haven't much faith. This woman and I have personality clash issues in the first place, and now she's threatening my kid... and has actively worked to deny him service. I'm expecting the whole mess to either last five minutes, or drag on in hell until I have to extract myself to pick up Joey. I wish McDonald's sold beer.
The problem is that he is starting to perseverate on it. Instead of doing his work, he is echoing the toy. Instead of participating in class, he echoes the toy. Instead of interacting with the world around him, he echoes the toy.
Hence the seeking of a doctor yesterday. Is he uncomfortable, maybe sick? Is he using this toy to comfort himself because he is uncomfortable, unhappy, afraid? Is there something wrong at school? Are we doing something that is making him want t retreat into reciting, echoing, letters? With all the advances he has made, he still can't tell us. He thinks the question "Are you OK?" is, without fail, "I'm OK." Its a form... and increasingly boring one... not communication.
I meet with the school OT in the morning. I haven't much faith. This woman and I have personality clash issues in the first place, and now she's threatening my kid... and has actively worked to deny him service. I'm expecting the whole mess to either last five minutes, or drag on in hell until I have to extract myself to pick up Joey. I wish McDonald's sold beer.
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