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?
Wednesday, April 11, 2007
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.
Monday, April 02, 2007
Trying to see the doctor
It sometimes amazes me what people expect from children. Joey has been getting cold and clammy, and even sweaty, so I tried to take him in to the doctor this morning. We wanted to be sure it was connected with coming off the steroid, and not anoter problem. Our own doctor can't see him until Thursday... so we often go over to the Medic One, a walk-in clinic. I got there for opening, but we were still fourth in line. OK, I thought. 45 minutes. A little long for kids to wait- and I had both guys with me today- but we'll deal.
An hour and a half and two meltdowns later, we were still waiting. The first people hadn't come out yet. The other folks in teh waiting room were giving us the looks-could-kill scowls and the why-can't-you-control-your-brats frowns (after all, they weren't feeling well, either- why would they want to see two little boys screaming, kicking, and hitting their mom? TWICE?) The staff was getting annoyed with us, too. They couldn't tell me how long it would be. No one could tell me anything. We finally gave up and left. I'm just going to keep Joey quiet for today, and if he's still not right, we'll try again tomorrow.
An hour and a half and two meltdowns later, we were still waiting. The first people hadn't come out yet. The other folks in teh waiting room were giving us the looks-could-kill scowls and the why-can't-you-control-your-brats frowns (after all, they weren't feeling well, either- why would they want to see two little boys screaming, kicking, and hitting their mom? TWICE?) The staff was getting annoyed with us, too. They couldn't tell me how long it would be. No one could tell me anything. We finally gave up and left. I'm just going to keep Joey quiet for today, and if he's still not right, we'll try again tomorrow.
Friday, March 30, 2007
Wednesday, March 28, 2007
Official hoops
We got the official letter from Edd today, the Director of Student Services. Ths is the letter that takes two pages to say "f&*# you." The OT is supposed to meet with my OT and I and "collaborate" on a sensory plan for Joey. Like my private OT works for free, or that we can come up with a single plan, and it is all done. And all of this is supposed to be a "good faith effort" on the part of the school. Like they 've all suddenly had a religious conversion and can now handle sensory issues like professionals. Oh, and I'm supposed to meet privately for "coffee" with the woman who thinks my child needs no summer service, has no coordination issues, and shouldn't have gum because it is "against school rules." Yes. Riiiiiiiiiiiiiiight.
Oh, and it thanks us for being such wonderful advocates for our child. Right. If I'm such a wonderful advocate, why isn't Joey getting an appropriate education? Or rather, why is the free part of that education not appropriate? Because, quite frankly, I suck.
Oh, and it thanks us for being such wonderful advocates for our child. Right. If I'm such a wonderful advocate, why isn't Joey getting an appropriate education? Or rather, why is the free part of that education not appropriate? Because, quite frankly, I suck.
Tuesday, March 27, 2007
Hyacinths
Last fall, my mom bought me more bulbs than normal gardens ever plant. I love bulbs. You put them in the ground, toss some cow manure on them twice a year, and bingo! You have flowers. I don't plant many tulips, they wear out. But hyacinths and daffodils... gimme.
I got to pick the bulbs. We were in a local nursery center, and having a really bad month, and I handpicked each bulb, it was heaven. I managed to get them in teh ground, which is a miracle. And now I am SO glad I did. They are blooming today. It was a warm, sunny delight of a day, and my hyacinths came out, and coming in from class this evening, it just smelled SO wonderful. It makes being tired not so bad when the hyacinths are blooming. You can almost feel the perfume in the air, and when it is still like now, the weight of it hugs you. How can anyone be unhappy when hyacinths are blooming?
I got to pick the bulbs. We were in a local nursery center, and having a really bad month, and I handpicked each bulb, it was heaven. I managed to get them in teh ground, which is a miracle. And now I am SO glad I did. They are blooming today. It was a warm, sunny delight of a day, and my hyacinths came out, and coming in from class this evening, it just smelled SO wonderful. It makes being tired not so bad when the hyacinths are blooming. You can almost feel the perfume in the air, and when it is still like now, the weight of it hugs you. How can anyone be unhappy when hyacinths are blooming?
Having a misery day
I'm tired, I have a sniffle, and I'm feeling really miserable today. If life were left up to me, I'd meet the stupid school OT for coffee, slump in my chair the whole time, smile, and nod, and have this round be over. This woman is not suddenly going to understand sensory issues or deal with them appropraitely, but we have 12 more years stuck with this woman. There aren't any other choices, unless we move or sue. And Im paying too much money in therapies to afford to really sue. Unless I get a fifth job. I'm running out of hours in the day. Andy now needs 2 30-minute sessions of therapeutic listening (anyone else done that?), but that's not so bad, because I just picked times I was playing with him, anyway. Now he plays with headphones on. Only I can't cut any corners; I can't get a si of something to drink or check my email surreptiously, because he'll take the headphones off. WE actually went up a volume setting today, big big stuff apparently. He likes the songs. My garden needs a layer of spring mulch, which for us is a thick layer fo newspaper to keep the weeds down covered by a light, decorative sprinkling of hardwood shredded bark. BUt I never got to it last year. This year isn't looking good, either. I miss my garden. I'm just so tired.
Monday, March 26, 2007
What to do
So the director of Student Services had a meeting with the staff, and our IEP meeting, or whatever, and basically told the OT to get with our OT and us and "colloborate on a plan for Joey's sensory issue that we all feel comfortable with."
Sounds reasonable, doesn't it?
Except that the school OT doesn't do sensory stuff. The problem with teh plan we have right now is that leavin gher to implement it, when she is not skilled to do so, it ludicrous. How can I colloborate on a plan when the only problem with teh plan is qustionable personnel?
And sorry about the work we've already done. We're just screwed with that.
The only thing I can see to do is to move forward as we are... tracking down a lawyer and some educational specialists.
Sounds reasonable, doesn't it?
Except that the school OT doesn't do sensory stuff. The problem with teh plan we have right now is that leavin gher to implement it, when she is not skilled to do so, it ludicrous. How can I colloborate on a plan when the only problem with teh plan is qustionable personnel?
And sorry about the work we've already done. We're just screwed with that.
The only thing I can see to do is to move forward as we are... tracking down a lawyer and some educational specialists.
Saturday, March 24, 2007
What a Day!
So yesterday was quite the adventure. It was the first beautiful Friday we've had in a while, and the kids didn't have Wee Time, so I thought ti would be good to take them somewhere. Joey wasn't feeling good Thursday, but he seemed to be recovered, so I thought Richmond and goat-petting would be an excellent destination.
We were delayed by ome phone calls- the most damaging being one of the lawyers calling to say she wasn't taking new cases, and perhaps I ought to spend my energies making sure his next IEP is "airtight." TO which I could only think, I canput all the OT goals and time in there I want, if its done by a person with an attitude and lack of skill, what good is it? But anyway...
So I packed up the guys and headed out to get some gas. I was about to right-turn-on-red when a little truck cut me off, and I had to brake. I didn't hit him. The person behind me, however, didn't stop in time, and we were bumped. It was more of an annoyance than anything else; there's a dent in my tailgate, but it still works, and no one was hurt. Andy freaked because of teh bang, but soon was giggling with his brother. WE had to wait for a policeman to show up, who was very nice, but it ate our morning.
So instead of heading down to Richmond right away, we went ot World Market and picked up a set of CHinese paints and brushes. I want to show my students how difficult Chinese ink painting really is, and there is no better way than handing them a brush, a stone, and some dry ink, and saying "go for it!" The store was a disaster waiting to happen- little kiosks of grabbables every where. Fortunately, my guys were more interested in each other, and they were perfect little angels. I was so proud of them! We decided to go get Grandma and go on to petting goats, they were so good.
Goat petting is fun. Feeding them is even better. There were peacocks on top of the chicken coop, and Joey found them all by himself- it is such a miracle to have him noticing his environment, but to really explore it to find peacocks way over his head... wow! And when they got tired, they said goodbye to the animals and came along to the car without a lick of trouble. Incredible.
So home we went, and rested for a bit while I made some spaghetti for dinner, and returned more phone calls (Kennedy Krieger, the director fo student services, another possible professional advocate, a couple of law offices). We had a nice dinner, some nice baths, and an OK bedtime (Andy was a bit of a fuss, the time change is a little bit of a mess still). My husband and I setled in for the night with our work.
About 11:30, we heard tow quick barks from Joey's room. Oh no, I thought, croup! And he came in barking, sure enough, so I got the humidifier going in the bathroom, and got settled into the steam with him whil Allan ran to get some meds for him. He had been gone... five minutes? Not ten... and Joey started to scream with every breath, "I'm broken! I'm broken!" OK, the mist isn't working, I thought, I'll get his shoes on and take him over to emergency when Allan gets back. I carried him down the stairs. I foudn the shoes. I took up Joey's foot in my hand. It was cold.
It was blue.
I ran to the door. No Allan.
I called 9-1-1. The dispatcher was very professional, and I rubbed Joey's hands and talked to him until we could hear the ambulance. He asked for Daddy, he asked for Grandma. Broken-broken-broken- all gone. He said he could hear the ambulance, and I told him they wer coming to help, help was coming, the doctor was coming. Allan arrived just as the ambulance and the fire truck did. THey put an oxygen mask on him, and he was better within a minute. The blue faded. He smiled at me, at the paramedic, and he looked for his Daddy. We told him he would get to ride in the ambulance, and he seemed happy about that, sitting up on the stretcher like a big, big boy and letting them strap him in.
I got into teh ambulance with him. He was turning slowly pink again. We were waiting for him to stabilize, and they switched to blow-by. He was giving high-fives to one ofthe paramedics. They asked him some questions, and he was answering and responding to them pretty well. Then he said, "All fixed now. Thank you. I feel better."
The ride was fun for him. He liked getting the x-rays taken. He didn't like the medicine much, but he did OK with teh mask and the all. We finally went home about 3 am. On the way home, Allan said, "Hey, Joey, Did you have fun? Want to do this again tomorrow?"
To which that silly boy replied, "oh, YES! I had fun!"
We were delayed by ome phone calls- the most damaging being one of the lawyers calling to say she wasn't taking new cases, and perhaps I ought to spend my energies making sure his next IEP is "airtight." TO which I could only think, I canput all the OT goals and time in there I want, if its done by a person with an attitude and lack of skill, what good is it? But anyway...
So I packed up the guys and headed out to get some gas. I was about to right-turn-on-red when a little truck cut me off, and I had to brake. I didn't hit him. The person behind me, however, didn't stop in time, and we were bumped. It was more of an annoyance than anything else; there's a dent in my tailgate, but it still works, and no one was hurt. Andy freaked because of teh bang, but soon was giggling with his brother. WE had to wait for a policeman to show up, who was very nice, but it ate our morning.
So instead of heading down to Richmond right away, we went ot World Market and picked up a set of CHinese paints and brushes. I want to show my students how difficult Chinese ink painting really is, and there is no better way than handing them a brush, a stone, and some dry ink, and saying "go for it!" The store was a disaster waiting to happen- little kiosks of grabbables every where. Fortunately, my guys were more interested in each other, and they were perfect little angels. I was so proud of them! We decided to go get Grandma and go on to petting goats, they were so good.
Goat petting is fun. Feeding them is even better. There were peacocks on top of the chicken coop, and Joey found them all by himself- it is such a miracle to have him noticing his environment, but to really explore it to find peacocks way over his head... wow! And when they got tired, they said goodbye to the animals and came along to the car without a lick of trouble. Incredible.
So home we went, and rested for a bit while I made some spaghetti for dinner, and returned more phone calls (Kennedy Krieger, the director fo student services, another possible professional advocate, a couple of law offices). We had a nice dinner, some nice baths, and an OK bedtime (Andy was a bit of a fuss, the time change is a little bit of a mess still). My husband and I setled in for the night with our work.
About 11:30, we heard tow quick barks from Joey's room. Oh no, I thought, croup! And he came in barking, sure enough, so I got the humidifier going in the bathroom, and got settled into the steam with him whil Allan ran to get some meds for him. He had been gone... five minutes? Not ten... and Joey started to scream with every breath, "I'm broken! I'm broken!" OK, the mist isn't working, I thought, I'll get his shoes on and take him over to emergency when Allan gets back. I carried him down the stairs. I foudn the shoes. I took up Joey's foot in my hand. It was cold.
It was blue.
I ran to the door. No Allan.
I called 9-1-1. The dispatcher was very professional, and I rubbed Joey's hands and talked to him until we could hear the ambulance. He asked for Daddy, he asked for Grandma. Broken-broken-broken- all gone. He said he could hear the ambulance, and I told him they wer coming to help, help was coming, the doctor was coming. Allan arrived just as the ambulance and the fire truck did. THey put an oxygen mask on him, and he was better within a minute. The blue faded. He smiled at me, at the paramedic, and he looked for his Daddy. We told him he would get to ride in the ambulance, and he seemed happy about that, sitting up on the stretcher like a big, big boy and letting them strap him in.
I got into teh ambulance with him. He was turning slowly pink again. We were waiting for him to stabilize, and they switched to blow-by. He was giving high-fives to one ofthe paramedics. They asked him some questions, and he was answering and responding to them pretty well. Then he said, "All fixed now. Thank you. I feel better."
The ride was fun for him. He liked getting the x-rays taken. He didn't like the medicine much, but he did OK with teh mask and the all. We finally went home about 3 am. On the way home, Allan said, "Hey, Joey, Did you have fun? Want to do this again tomorrow?"
To which that silly boy replied, "oh, YES! I had fun!"
Thursday, March 22, 2007
Strangeness
It is very strange to relate the same story half a dozen times, and always get the same reaction... "So... have you found a good lawyer yet?"
Relating our meeting on Wednesday, before even mentioning that we were thinking its time for a lawyer, this has been, without exception, the first comment from everyone I have spoken to.
It is very strange.
Why should people need lawyers to get what the law already says is their right? And why should it be so common to need one that whole firms do nothing else but this specific type of law? Are schools really this stupid? For the $200 grand its going to cost for one due process, they could put together a decent in-house autism program, especially in a little system like this one. But instead they pay all that money to lawyers. Or spend all that energy in divide- and-conquer, instead of using it to help kids. What planet is this, anyway?
Relating our meeting on Wednesday, before even mentioning that we were thinking its time for a lawyer, this has been, without exception, the first comment from everyone I have spoken to.
It is very strange.
Why should people need lawyers to get what the law already says is their right? And why should it be so common to need one that whole firms do nothing else but this specific type of law? Are schools really this stupid? For the $200 grand its going to cost for one due process, they could put together a decent in-house autism program, especially in a little system like this one. But instead they pay all that money to lawyers. Or spend all that energy in divide- and-conquer, instead of using it to help kids. What planet is this, anyway?
Wednesday, March 21, 2007
Anybody out there know a good lawyer?
We need one licensed in Virginia. Unfortunatle, that's our update from here.
Thank you.
Thank you.
Having a Stimmy Week
The return of the tracking has been something of a shock for us. WE know it comes and goes, like everybody's moods, but holy crap, he's putting his eyes right to things to track them, or to watch numbers. He hasn't been this bad since school started 2 /2 years ago! It is distressing to us, because usually this means HE is stressed. The question is, why? Is he just stressed because his brain is moving forward and doing new things, or is there a real concern- like something going on at school we should know about?
While we investigate, I will say it has given us an interesting opportunity to see what supports he needs to channel these needs for stimulation. We have discovered that he will focus on video games, een if he will focus on NOTHING else. He loves Pinky DInky Doo and Oobi games through the Noggin site, the coloring pages on Mr. Roger's Neighborhood's site, and some of the counting-based games on Sesame Street. Counting and numbers are very comforting for him. WE also noticed that putting him in a rocking chair makes a difference, and having something in his hands makes a difference. IF he can sit with some playdough in his hands, he can do more. I think having the trackball mouse for the video games gives him that same kind of input, and heps him focus. And, of course, the gum...
I wouldn't really worry about him not being able to focus fully except that full-day kindergarten is coming. He won't have a choice- he has to perform the activitiy when it is presented. So we need strategies for helping him perform those tasks, and perform them on time. He'll have aenough trouble keeping up because of the processing delays, but if we can find those strategies that help him process- instead of zone out completely and process nothing- the happier he will be, because his frustration will be less.
Oh, by the way, I meet with teh Director of Student Services this morning about the school OT situation. Wish me luck, and I will keep you posted!
While we investigate, I will say it has given us an interesting opportunity to see what supports he needs to channel these needs for stimulation. We have discovered that he will focus on video games, een if he will focus on NOTHING else. He loves Pinky DInky Doo and Oobi games through the Noggin site, the coloring pages on Mr. Roger's Neighborhood's site, and some of the counting-based games on Sesame Street. Counting and numbers are very comforting for him. WE also noticed that putting him in a rocking chair makes a difference, and having something in his hands makes a difference. IF he can sit with some playdough in his hands, he can do more. I think having the trackball mouse for the video games gives him that same kind of input, and heps him focus. And, of course, the gum...
I wouldn't really worry about him not being able to focus fully except that full-day kindergarten is coming. He won't have a choice- he has to perform the activitiy when it is presented. So we need strategies for helping him perform those tasks, and perform them on time. He'll have aenough trouble keeping up because of the processing delays, but if we can find those strategies that help him process- instead of zone out completely and process nothing- the happier he will be, because his frustration will be less.
Oh, by the way, I meet with teh Director of Student Services this morning about the school OT situation. Wish me luck, and I will keep you posted!
Monday, March 19, 2007
Therapeutic Listening
So Andy has been having some issues with noise and sound, so we signed him up for therapeutic listening. This is a program where the child listens to specially modulated sound, stimulating brain development. His first session was today.
The whole experience was overwhelming. He was in a new room, with a new person, and then she wanted to put headphones on him! Yikes! Insta-meltdown! Then she started noticing other things, and finally turned to me and said, "He really desperately needs this; but you know he has other issues, right?"
Riiiiiiight. Just what I want to hear on a Monday morning.
So we decided to just try to get him to put the earphones on this week, instead of having him listen to anything. Coming down teh road, I put them on, so he would see me wearing them; and he wanted them. So I handed then back to him... and he put them right on, and cheerfully wore them until naptime.
Riiiiiiight.
So the question is... how to control the overload? The earphones do not muffle outside sound, but I wonder if they control it some for him- so that it hits his ear at a certain angle, and if that would make a difference. I wonder if putting sound directly into his ear like this might not hurt. Yet, I can't send him to school like he is- there is no way he can focus on anythng in a classroom full of chaotic noise! Maybe sending him to a Montessori, where its usually quiet, would work better fo him than a public school. I suppose we'll have to wait it out and see. :P
The whole experience was overwhelming. He was in a new room, with a new person, and then she wanted to put headphones on him! Yikes! Insta-meltdown! Then she started noticing other things, and finally turned to me and said, "He really desperately needs this; but you know he has other issues, right?"
Riiiiiiight. Just what I want to hear on a Monday morning.
So we decided to just try to get him to put the earphones on this week, instead of having him listen to anything. Coming down teh road, I put them on, so he would see me wearing them; and he wanted them. So I handed then back to him... and he put them right on, and cheerfully wore them until naptime.
Riiiiiiight.
So the question is... how to control the overload? The earphones do not muffle outside sound, but I wonder if they control it some for him- so that it hits his ear at a certain angle, and if that would make a difference. I wonder if putting sound directly into his ear like this might not hurt. Yet, I can't send him to school like he is- there is no way he can focus on anythng in a classroom full of chaotic noise! Maybe sending him to a Montessori, where its usually quiet, would work better fo him than a public school. I suppose we'll have to wait it out and see. :P
Sunday, March 18, 2007
A Review: Nature's New Hope
Charlottesville today. We checked out a therapy where Joey would listen to music and look at a light while lying on a table that moves. This is supposed to encourage his brain to improve his sensory integration.
The three different parts of this I have seen elsewhere. The light has to do with visual integration, but I haven't seen it in any "regular" or mainstream therapies... I hope someone will comment if they have. The table movement is for vestibular stuff, like the swings and stuff Joey does for OT. The sound is similar to therapeutic listening, which Andy starts tomorrow, and both our OT and out speech therapy folks were very happy about.
A sample session was part of the visit. He hated the table. He had to lay on his back and look at the light, but I think it made him nauseous. He preferred to sit up, but of course, that wouldn't do. But far worse, the lights had to be out. I know most autistic people prefer less light, or even dark, but Joey is really freaked by it, unless he's in his own bedroom. He hates dark. The lady tried to use the light switch as a reinforcer to encourage him to lay on his back and be still, but that made me all the more skeptical. "Do this and I'll stop torturing you" is just not what I would consider good therapy. However, he definitely was speaking better and clearer while this was all happening than I've heard from him in a while.
It costs $3000, plus the costs of being in Charlottesville for 12 days, since he would need to be there every day, twice a day.
So I would say, if you have a kid with sensory issues, and you start checking this out, I can't really say there is nothing to it at all. However, overall it seemed a little... duckish.
The three different parts of this I have seen elsewhere. The light has to do with visual integration, but I haven't seen it in any "regular" or mainstream therapies... I hope someone will comment if they have. The table movement is for vestibular stuff, like the swings and stuff Joey does for OT. The sound is similar to therapeutic listening, which Andy starts tomorrow, and both our OT and out speech therapy folks were very happy about.
A sample session was part of the visit. He hated the table. He had to lay on his back and look at the light, but I think it made him nauseous. He preferred to sit up, but of course, that wouldn't do. But far worse, the lights had to be out. I know most autistic people prefer less light, or even dark, but Joey is really freaked by it, unless he's in his own bedroom. He hates dark. The lady tried to use the light switch as a reinforcer to encourage him to lay on his back and be still, but that made me all the more skeptical. "Do this and I'll stop torturing you" is just not what I would consider good therapy. However, he definitely was speaking better and clearer while this was all happening than I've heard from him in a while.
It costs $3000, plus the costs of being in Charlottesville for 12 days, since he would need to be there every day, twice a day.
So I would say, if you have a kid with sensory issues, and you start checking this out, I can't really say there is nothing to it at all. However, overall it seemed a little... duckish.
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