Dancing with SuperGrover...
What can I say... Jacob likes to boogie!!!
Zoe!!!!
We love Zoe!
Thursday, August 16, 2007
More Sesame Place pics...
Dancing with SuperGrover...
What can I say... Jacob likes to boogie!!!
Zoe!!!!
We love Zoe!
An interesting article about IQ tests...
...and autistics. Of particular interest to me as I have to get Jimmy tested to get him on the list for DD Waivers.
Mr. Kirkland Goes to Washington
Jimmy and I are taking a little trip in the AM to Congressman Wolf's office to meet his new healthcare staffer and talk about autism. Pics tomorrow...
Wednesday, August 15, 2007
Mandy Moore covers Rihanna
I have a mild cover song obsession, so when I tripped across this, I couldn't resist...
Cookie Monster Gallery
Cookie Monster is worthy of his own post...
As I said in an earlier post, he has a Cookie Monster t-shirt. He still "talks" about it - meaning he smiles and says Cookie Monster repeatedly, so we talk about the day.
Thanks Matt.
A few Sesame Place photos!!!!
Jacob with Elmo...
Jacob using the ropes to pull himself up...
Hi from Elmo!
Jimmy (green swim trunks) sliding down...
Monday, August 13, 2007
Wow!!!! Back home, back to work, back to the world...
First off, to finish up the vacation stories. When we returned to Sesame Place on Sunday, I went back to the Welcome Center to get Jimmy's wristband. When I arrived there, I gave the woman working the desk Jimmy's name. She told me she had seen my blog... she was Zoe's mom. We talked for a few minutes - now we know why her daughter was so wonderful and sweet! Clearly genetics! As souveniers, I bought a little stuffed Zoe of my office - I was really touched by the whole experience of meeting Heather (if you are reading, I would love to keep in touch!!!) and I got Jimmy a Cookie Monster shirt. He loves it. We had a wonderful day - we left about 2pm and swung out to Hershey to see Chocolate World. It had been our intention to go to the park for a few hours during their twilight prices, but it was really more than I could do. But the tour was fun!
We got back on Sunday, going to bed early because I had to get up at 5:30 a.m. to get on the road at 6:30 for a 9 a.m. appointment at Jimmy's specialist in Rockville. On a weekend, it's about an hour. I allowed two hours for the drive since it was a Monday morning. I arrived up there at 8... only to find out that the doctor had moved his vacation up a week and canceled my appointment. It would have been nice if they had called or left a message. I made it back to work by 9:30, but I am still steamed. The doctor is very good at what he does, but is not good with follow through with correspondence and so forth. But there aren't enough developmental pediatricians to go around - I have to stick with him because most aren't even taking new patients in D.C.
But that has been the only negative in the past several days. My first day back at work was great... I got a great deal of unpacking done today and will likely have a decent handle on the workroom and my office stuff by the end of tomorrow. I also won't have furniture until next week, but I am just going to roll with it and bring my laptop to work.
The photos are on the upstairs computer, so I will post those later.
We got back on Sunday, going to bed early because I had to get up at 5:30 a.m. to get on the road at 6:30 for a 9 a.m. appointment at Jimmy's specialist in Rockville. On a weekend, it's about an hour. I allowed two hours for the drive since it was a Monday morning. I arrived up there at 8... only to find out that the doctor had moved his vacation up a week and canceled my appointment. It would have been nice if they had called or left a message. I made it back to work by 9:30, but I am still steamed. The doctor is very good at what he does, but is not good with follow through with correspondence and so forth. But there aren't enough developmental pediatricians to go around - I have to stick with him because most aren't even taking new patients in D.C.
But that has been the only negative in the past several days. My first day back at work was great... I got a great deal of unpacking done today and will likely have a decent handle on the workroom and my office stuff by the end of tomorrow. I also won't have furniture until next week, but I am just going to roll with it and bring my laptop to work.
The photos are on the upstairs computer, so I will post those later.
Saturday, August 11, 2007
Day 2 of Sesame Place and a side trip to Chocolate World...
More on this tomorrow, as I have to get some overly excited boys down for the night. Suffices to say that today was amazing as well!!!
Friday, August 10, 2007
Greetings from Sesame Place... and special greetings to Zoe and Cookie
I will update with a ton of photos when I get home, but we are at Sesame Place, our last blast before I head back to school to ready the new library on Monday. We went all out this time, including the Dine With Me character lunch for the boys. They loved it, especially Jimmy. But that would be an understatement of what really happened...
The moment we walked in, Jimmy said "Cookie Monster" in his tiny little voice. We knew that we had to be sure that Jimmy got a minute with Cookie. The characters all floated around the room - it was a great experience. At times Jimmy found it a little overwhelming, but he really enjoyed his visits with Ernie and Zoe. Actually, Zoe hung out for a while. I always tell the characters about Jimmy - it often makes a difference in their approach to him - and Zoe took a lot of time. I was babbling on about him and Zoe pointed at me and then made muscles with her arms. "Your strong." I was so touched. So I told her about him and my other kids at my school and she actually pointed at herself, crossing her arms, and then point at me. "I love you." Eventually she said goodbye to the boys and moved on, but Zoe was just so sweet.
Jimmy told the character handler of Jimmy's desire to see Cookie Monster - he had to, because Cookie had been hanging out on the other side of the room. Right after he finished his song, he cruised over to our table. Up until this point, Jimmy greeted the characters warily at first. When Cookie Monster arrives, he smiled a bit. He was excited to see him. Cookie hung out for a few minutes too. We told him about Jimmy saying his name when he arrived, that Jimmy loved Cookie Monster on Sesame Street, even that the first time I realized Jimmy understood spoken language was when Jimmy laughed at one of Cookie Monsters jokes on the show.
It was such a great experience, I could not have imagined it getting any better. But it did. As we were walking over to the big play area to let them run around, three college aged kids were coming my direction. This very petite and pretty girl walked up to me and started with "You don't know me..." It was Zoe out of costume. She told me that I was amazing and just kind of told me what she was trying to express to me when we were at the event, when she couldn't talk. Then the guy with her spoke - he was Cookie Monster. He said was very touched that Jimmy was so pleased to see him. I am just sorry that Jimmy wasn't with me. He had gone ahead to the playground. I told them about the blog, so I am hoping they will visit. I don't think I told them enough how amazing they made our day.
Tuesday, August 07, 2007
Two pics of Jimmy that are sort of amazing...
We flew American Eagle from Nashville to National on a small jet. There were two seats on one side of the aisle and one on the other. It was a configuration that simply wasn't going to work for takeoff. Fortunately, there was an amazing compassionate family who let Jacob sit next to them during takeoff so I could focus on getting Jimmy settled. Actually, he did amazing well during take off... no meltdowns or anything. We were seated however in the back of the aircraft. The noise was so unbearable, he went half the flight with his fingers in his ears.
Eventually, Jacob rejoined us and sat in the single seat. Then I sat there as the boys played. Then Jacob moved back. On approach he started freaking because his ears were bothering him. He want to lie across my lap, so I had to move Jimmy to the single seat. What happened next brought tears to my eyes for the sheer normalcy of it.
He sat there, quietly. He looked out the window happily, watching the world go by beneath the wings.
He pulled the emergency card out and read it. It was cute. Then, when they made the annoucement that the seats had to go upright... he pressed the button to do just that. I think he understood what was being asked and he did it. It is so simple, yet completely blew me away.
I am so proud of my boy.
Eventually, Jacob rejoined us and sat in the single seat. Then I sat there as the boys played. Then Jacob moved back. On approach he started freaking because his ears were bothering him. He want to lie across my lap, so I had to move Jimmy to the single seat. What happened next brought tears to my eyes for the sheer normalcy of it.
He sat there, quietly. He looked out the window happily, watching the world go by beneath the wings.
He pulled the emergency card out and read it. It was cute. Then, when they made the annoucement that the seats had to go upright... he pressed the button to do just that. I think he understood what was being asked and he did it. It is so simple, yet completely blew me away.
I am so proud of my boy.
We are back...
After Jimmy's recovering and another day in the pool at my dad's, we are back from Texas. We made our arrival in dramatic fashion as our bags went to Dulles, we went to National, and then we were rear ended on 28 on our way home. Don't worry, we are all okay. Such drama for six days away. I hope our weekend trip away is less eventful.
So, since it's the middle of the night and I am tired, storytelling will be limited. Here are a few photos...
Jacob eating ice cream at Braum's on Sunday.
My dad's Braum's selection.
To my left...
and my right on the flight from DFW to Nashville on the way home...
So, since it's the middle of the night and I am tired, storytelling will be limited. Here are a few photos...
Jacob eating ice cream at Braum's on Sunday.
My dad's Braum's selection.
To my left...
and my right on the flight from DFW to Nashville on the way home...
Saturday, August 04, 2007
Pimp My Ride
Best. Cart. Ever. For a dollar, your kids can ride around in a character themed cart that plays videos. Why don't they have these in our Wal-marts at home?
CareNow cares not...
I took Jimmy to see a doctor today at an urgent care place called CareNow in Denton. It is a misnomer.
When I checked in, I let the nurse know that Jimmy was autistic and could be difficult in addition to all his other symptoms - fever, throwing up, etc... When we saw the doctor, I asked if he had gotten the heads up. He said yes, but that "this is an urgent care facility and we don't have time..." and then trailed off. We don't have time for kids like yours. Patients with special needs. He didn't finish, but you can tell from the start that it was going nowhere good. Those words should never have been formed in his brain. I told him until developmental pediatricians open up their own urgent care facilities, that kids like my son would need medical care when they are sick and come.
I gutted it through because my kid was sick and needed a doctor, but there was so much more I wanted to say. I was angry, insulted, crushed. I felt like he didn't want to take care of my son because he wasn't normal. And my son was sick. Like he didn't deserve care. I know more than likely, what he was thinking was that I have to crank through these patients, I don't have time for checking this combative kid out. But that's not what I heard and it certainly doesn't excuse his rudeness and thoughtlessness.
A doctor doesn't get to pick his patients. Certainly not in an urgent center. Unless CareNow has a policy of not providing medical care for people with disabilities. I didn't see one posted on the door. I filled out and mailed a comment card after the appointment, but I will be writing and calling the home office this week as well (apparently this place is a chain.) I will see to it that no CareNow patient with a disability is treated so rudely again.
Jimmy has strep. They gave him a shot of antibiotics. I am hoping he will be fever free in the morning.
No trip to Texas is complete...
...without a visit to the ER. That's where Jimmy will be headed in the morning. He is still feverish. I am betting ears - it seems to happen every time we fly.
Friday, August 03, 2007
Day three
Jimmy is still sick. He had a brief burst of energy this morning and went back into the pool, but he is asleep as is Jacob, who has had a busy couple of days playing in the pool with his cousin Katie and with the various animals around here.
Thursday, August 02, 2007
Never a dull moment...
Jimmy has thrown up four times and Sarah picked up lice from a playmate, so we are treating his new BFF Jacob right now. I just need to pick up Jimmy's bug or Sarah's bugs to make my trip complete.
Greetings from my vacation.
Greetings from my vacation.
Jimmy makes the news again...
Check it out... the reporter that took over for Alex Granados (who got a richly deserved promotion) is Kipp Hanley. He wrote a very nice article about Walmart's new toilet.
Greetings from Denton, Texas
I wrote this on the way here yesterday, so I thought I would post it and then give the context...
"Well, that was a little slice of heaven! We tried to get on a 6:05am
flight to Dallas and didn't make it off stand by. With prospects
bleak over there,we headed to National. Our flight turned doubtful
before we ever arrived. So now we are on a flight to Nashville."
Since my niece was returning to Texas, I decided to go with her. An extra set of hands would be helpful, right? They were, but, wow, what a day!
I got a nice night's sleep of less than 3 hours, before setting off to the airport. We arrived at 4:30 for a 6:05 flight. Since we were flying standby, we knew there was a chance that we wouldn't make it. We didn't. Since prospects were bleak for the rest of the day at Dulles, we got listed for a flight at National. By the time I spend $51 for the four of us to hop the SuperShuttle and we arrived, that flight was not promising either. My brother-in-law told us there were 20 seats available to Nashville and 24 from Nashville to DFW, we ran to make a Music City flight. We finally arrived here at about 1pm. My stepmom came home for her quilting group so I could take a nap. I feel better today.
Of course, there is more to the story, but it will have to wait. I think the kids should be waking up shortly. Speaking of sleep, I do have a photo to share from the flight - the last five minutes with Jacob. That was the only sleep achieved by any of us during the flight.
"Well, that was a little slice of heaven! We tried to get on a 6:05am
flight to Dallas and didn't make it off stand by. With prospects
bleak over there,we headed to National. Our flight turned doubtful
before we ever arrived. So now we are on a flight to Nashville."
Since my niece was returning to Texas, I decided to go with her. An extra set of hands would be helpful, right? They were, but, wow, what a day!
I got a nice night's sleep of less than 3 hours, before setting off to the airport. We arrived at 4:30 for a 6:05 flight. Since we were flying standby, we knew there was a chance that we wouldn't make it. We didn't. Since prospects were bleak for the rest of the day at Dulles, we got listed for a flight at National. By the time I spend $51 for the four of us to hop the SuperShuttle and we arrived, that flight was not promising either. My brother-in-law told us there were 20 seats available to Nashville and 24 from Nashville to DFW, we ran to make a Music City flight. We finally arrived here at about 1pm. My stepmom came home for her quilting group so I could take a nap. I feel better today.
Of course, there is more to the story, but it will have to wait. I think the kids should be waking up shortly. Speaking of sleep, I do have a photo to share from the flight - the last five minutes with Jacob. That was the only sleep achieved by any of us during the flight.
Monday, July 30, 2007
Photos from the last few days
Jimmy eating cake at his Parks and Rec birthday party with his therapist...
Jacob out to breakfast with me on Friday...
Jimmy just before he fell asleep on the couch. If he looks a like dopey, it's because this was after he took his sedative...
Buster, also referred to as Miss Kitty, keep watch over the now sleeping lump of a boy...
Wednesday, July 25, 2007
Happy Sixth Birthday!!!!
I can't believe it has been six years! I remember waking up after crashing from exhausting post C-section and looking at him in the bassinet next to me. I beat myself up over missing the first five hours of his life. Little did I know how much I would need the extra sleep.
After I was done teaching summer school today, I picked up a sheet cake and took it to his Extended Care program at Costello Park. His therapist brought him down. Forty kids sang "Happy Birthday" to him. It was fantastic! I love the kid so much, my heart is just ready to burst most of the time. Maybe because he doesn't talk back, I don't feel as constantly frustrated with him. Maybe it's because my heart is somehow even softer to him, simply because of the need I have to protect him, that he doesn't function in the world completely on his own. I just love him to pieces. I have since the first day - you know, the one where I found out I was pregnant - and I haven't stopped. Yeah, the ride has been bumpy, but he is amazing!
Tuesday, July 24, 2007
Sunday, July 15, 2007
Running through the mall...
Screaming Jacob's name...
Went to the mall with my mom and Jimmy's therapist for a community outing. While we were attempting to get Jimmy to use the bathroom, my mom sat outside with Jacob. It's a small bathroom - he got out in front of her and she was blocked in by his stroller. He took off at a run and went after him. The chase began on the lower level of the mall and ended on the upper level on the opposite side of it. And it didn't end with his capture either... my mom called me to tell me that she had lost sight of him and he was gone. I ran to the information desk, requested a security guard and took off running in the direction where he had last been seen.
I have never felt so helpless as I did running through the mall, yelling the name of my missing child. I think it was true terror. Apparently someone caught and returned him to my mother. She actually spanked him for his trouble. He turned and smiled at her. When she found me with him in tow, I started sobbing and yelling at him. Only then did he realize that he was in big trouble. It was the worst experience of my life, by far...
Needless to say, he isn't going to the mall again any time soon.
Went to the mall with my mom and Jimmy's therapist for a community outing. While we were attempting to get Jimmy to use the bathroom, my mom sat outside with Jacob. It's a small bathroom - he got out in front of her and she was blocked in by his stroller. He took off at a run and went after him. The chase began on the lower level of the mall and ended on the upper level on the opposite side of it. And it didn't end with his capture either... my mom called me to tell me that she had lost sight of him and he was gone. I ran to the information desk, requested a security guard and took off running in the direction where he had last been seen.
I have never felt so helpless as I did running through the mall, yelling the name of my missing child. I think it was true terror. Apparently someone caught and returned him to my mother. She actually spanked him for his trouble. He turned and smiled at her. When she found me with him in tow, I started sobbing and yelling at him. Only then did he realize that he was in big trouble. It was the worst experience of my life, by far...
Needless to say, he isn't going to the mall again any time soon.
Saturday, July 14, 2007
The loveable, laughable logic of an autistic boy
When I was at Bloom the other day, I got roped into buying more than I needed. The most stupid expenditure was Spiderman popsicles. Jacob had one and I put them in the freezer. When we got home from going to Potomac Mills with Diana today, Jimmy took them out and to the top bunk of his bed, where he left them to melt. All because they were Spiderman and he liked them. I threw them away and Jacob helped me clean up the mess. A few hours later I go to take the trash out. I realize that the wet, melting box isn't in there. He took them back to his bed again. Needless to say, the sheets are getting done.
Potomac Mills was my compromise on the whole zoo thing. I just figured we would rent strollers. They were out everywhere in the mall. I had to hoof it over to the Old Navy entrance just to find them. Just getting to the information desk, I had Jimmy going limp on me because he wasn't to see the battery powered dog at KB Toys. Jacob took off on Diana at a full sprint and I had to chase him around a shoe store, where he relished hiding from me. Got a lot of laughs from the other customers. I don't think they realized how close I was to losing my shiznit.
Speaking of other customers, next time I put Jimmy in a mall stroller, it will be with a t-shirt saying "I am autistic. What's your excuse?" People are just too damn judgmental.
My house is thrashed, but at this point, it can wait until the morning. I am going to my bed. I think the last one is finally asleep. Peace at last.
Potomac Mills was my compromise on the whole zoo thing. I just figured we would rent strollers. They were out everywhere in the mall. I had to hoof it over to the Old Navy entrance just to find them. Just getting to the information desk, I had Jimmy going limp on me because he wasn't to see the battery powered dog at KB Toys. Jacob took off on Diana at a full sprint and I had to chase him around a shoe store, where he relished hiding from me. Got a lot of laughs from the other customers. I don't think they realized how close I was to losing my shiznit.
Speaking of other customers, next time I put Jimmy in a mall stroller, it will be with a t-shirt saying "I am autistic. What's your excuse?" People are just too damn judgmental.
My house is thrashed, but at this point, it can wait until the morning. I am going to my bed. I think the last one is finally asleep. Peace at last.
Thursday, July 12, 2007
My weekend choice...
I am going to Toys R Us to buy this...
I can't figure out how to make a solo trip to the zoo work, so I am getting a pool, pulling up a lawnchair, and reading while the kids play. It's the best I can come up with. Fortunately my mom is going to spring me on Sunday to go to Fair Oaks to shop. Jimmy's birthday is coming, after all...
Sadly, I think this is what I will ultimately need...
The Axiom 2 Special Needs Stroller... only about $1100. Maybe I should have a bake sale...
Does it really have to be such a big production?
So, I am still toying around with the idea of taking the boys to the zoo on Saturday. It's not something I can do, however, without benefit of a stroller. The boys have outgrown theirs. It makes no sense to buy a brand new jogging stroller for two - it would be $200 and, weight wise, would last me only a year. So I have been surfing CraigsList. There is one for $100 in Fairfax and another for $50 in Maryland. I would be interested in the $50 if it were here.
The problem isn't just the weight. Jimmy is tall enough that he can put his feet down and offer up a good fight if he doesn't want move from where he is. Always a problem at the mall with KB Toys. A bigger problem going from enclosure to enclosure at the zoo. Can't lure him away from the tigers with "Let's go see the elephants." He doesn't get it and will just want to stay with the tiger.
Being alone with two kids is essentially house arrest. I guess I should suck it up and get a wading pool for the weekend and have some fun.
The problem isn't just the weight. Jimmy is tall enough that he can put his feet down and offer up a good fight if he doesn't want move from where he is. Always a problem at the mall with KB Toys. A bigger problem going from enclosure to enclosure at the zoo. Can't lure him away from the tigers with "Let's go see the elephants." He doesn't get it and will just want to stay with the tiger.
Being alone with two kids is essentially house arrest. I guess I should suck it up and get a wading pool for the weekend and have some fun.
Jimmy's up..
And so I am... he got me up at about 3:45 a.m. Not a big fan of my son at this moment. The clonidine puts him to sleep, but fairly often doesn't keep him there. At least we changed the locks so he can't go out the door. That peace of mind still isn't enough to let me return to bed. So here I am.
I am trying to screw up the nerve to take the boys into the city this weekend. I want to take them to the zoo. I am trying to figure out how to manage it on my own. They have outgrown the double umbrella stroller. I am toying with the notion of buying a double jogging stroller, if it will support 100 lbs between the two of them. That would give me a year. Neither boy has the self restraint to allow me to let both walk alone on major outings. And I hate being cooped up at home.
I am trying to screw up the nerve to take the boys into the city this weekend. I want to take them to the zoo. I am trying to figure out how to manage it on my own. They have outgrown the double umbrella stroller. I am toying with the notion of buying a double jogging stroller, if it will support 100 lbs between the two of them. That would give me a year. Neither boy has the self restraint to allow me to let both walk alone on major outings. And I hate being cooped up at home.
Tuesday, July 10, 2007
Monday, July 09, 2007
Jimmy Starts Summer School
After many different idirations of schedules and programs, Jimmy finally started summer school today. Three weeks at the school and then three weeks in home hours. That's on top of the 12 hours a week of therapy he gets from the school system and county. Another schedule to juggle. At least they are doing something different this year - Applied Verbal Behavior - saying "yes" or "no" instead of scripting both, following oral direction, etc... These things are helpful, but there is a lot to our schedule at the moment.
Added to this are two more time committments for me - an online class for my licensure and rejoining the gym. There is so much else stressing me out at the moment. I think I have added too much.
Added to this are two more time committments for me - an online class for my licensure and rejoining the gym. There is so much else stressing me out at the moment. I think I have added too much.
Monday Morning
I am exhausted and here I am, up for summer school. Hopefully this won't feel so pointless when the extra money appears on my paycheck. I could use the cash right now.
Saturday, July 07, 2007
August 13th
Well, we have sleep medication again. Of course, when I filled the prescription, I found out that Anthem forgot to enter Jimmy's name for coverage. And thus, the post-Kaiser era begins.
I did manage to get an appointment for Jimmy with his developmental pediatrician. He doesn't have anything in Fairfax for months, so I am hoofing it to Rockville to get him seen. I think we are going the ADHD medication route again. It is needed badly.
Week three of summer school begins Monday. I love the kids, we are all having fun, and I feel like they are learning. Jimmy's therapy goes on without his therapist of a year - she had emergency surgery and is out of commission - but he likes the woman delivering services, so it isn't a huge setback.
I added a link to my missing BFF. I haven't made the time to see her as I should - she is out in Front Royal. I miss her (and my other friends - I haven't seen anyone in awhile.) I will get out there soon. What up, T? :)
That's the update, for now.
I did manage to get an appointment for Jimmy with his developmental pediatrician. He doesn't have anything in Fairfax for months, so I am hoofing it to Rockville to get him seen. I think we are going the ADHD medication route again. It is needed badly.
Week three of summer school begins Monday. I love the kids, we are all having fun, and I feel like they are learning. Jimmy's therapy goes on without his therapist of a year - she had emergency surgery and is out of commission - but he likes the woman delivering services, so it isn't a huge setback.
I added a link to my missing BFF. I haven't made the time to see her as I should - she is out in Front Royal. I miss her (and my other friends - I haven't seen anyone in awhile.) I will get out there soon. What up, T? :)
That's the update, for now.
Thursday, July 05, 2007
Fun with Dora
Kids show are so incredibly annoying that anytime YouTube has fun with them (no matter how foul), I have to share....
Wednesday, July 04, 2007
Happy Fourth!!!
I am typing this while Jim is outside with Jacob. Fireworks were never Jimmy's scene. He has had a pretty rough day - but that, I mean we have had a rough day. A few, actually. I finally switched the boys of Kaiser Permenente as of July 1. That was such a bad scene, with all the hoops to jump through - the referrals, the waits, the lack of coverage, driving to Woodbridge or Falls Church for an emergency appointment. A huge pain. HMOs are great if there is nothing wrong with you. Obviously, not the case here.
We ran out of Jimmy's Catapres three days ago - Jimmy takes it to sleep. Without it, he hasn't. So Jacob can sleep, he has been bunking with us, but I have literally been awakened by Jimmy jumping on my ribs at 2 a.m. Tomorrow was the soonest we could get in with his new pediatrican, so we go in the afternoon. I am hoping the doctor will just write the script. If he is willing to writing something for the hyperactivity, it would such a gift right now!
That was one of the biggest problems with Kaiser - they were very hands off when it came to the autism stuff. The doctor wasn't able to perscribe anything to treat the symptoms/behavioral elements of autism. We had to go through the developmental pediatrican, who is impossible to get a returned call or e-mail from. He must be on Mars for vacation, because he hasn't responded at all this week - I was trying to get this filled before the switch, so there wouldn't be any interruption in his medication. Didn't work - Kaiser didn't help, Dr. Conlon disappeared. I am just exhausted and miserable at this point.
I can see the fireworks from my window. I have always loved them. At least I used to... it's a little pleasure that I feel like I have lost because I can't share them with Jimmy. They are just so loud for him - it's terrifying. I know it is corny, but it makes me sad that we can't be out there as a family, with everyone else.
Hey, at least he loves Christmas. We still have that.
We ran out of Jimmy's Catapres three days ago - Jimmy takes it to sleep. Without it, he hasn't. So Jacob can sleep, he has been bunking with us, but I have literally been awakened by Jimmy jumping on my ribs at 2 a.m. Tomorrow was the soonest we could get in with his new pediatrican, so we go in the afternoon. I am hoping the doctor will just write the script. If he is willing to writing something for the hyperactivity, it would such a gift right now!
That was one of the biggest problems with Kaiser - they were very hands off when it came to the autism stuff. The doctor wasn't able to perscribe anything to treat the symptoms/behavioral elements of autism. We had to go through the developmental pediatrican, who is impossible to get a returned call or e-mail from. He must be on Mars for vacation, because he hasn't responded at all this week - I was trying to get this filled before the switch, so there wouldn't be any interruption in his medication. Didn't work - Kaiser didn't help, Dr. Conlon disappeared. I am just exhausted and miserable at this point.
I can see the fireworks from my window. I have always loved them. At least I used to... it's a little pleasure that I feel like I have lost because I can't share them with Jimmy. They are just so loud for him - it's terrifying. I know it is corny, but it makes me sad that we can't be out there as a family, with everyone else.
Hey, at least he loves Christmas. We still have that.
Saturday, June 30, 2007
Senate Fully Funds the Combating Autism Act
From the ASA e-newsletter... I apologize for the lack of link.
Senate Fully Funds the Combating Autism Act
The Senate Labor, Health and Human Services and Education Appropriations Committee approved its version of the FY 2008 spending bill, including a 52 percent increase for autism-related activities at the CDC and Health and Resources Services Administration. This is the full amount authorized for these programs under the Combating Autism Act.
Specifically, the bill provides $37 million for the Neurodevelopmental Disabilities Residency Program and the Developmental-Behavioral Pediatrics Training Program, which both provide long-term, graduate-level interdisciplinary training, as well as services and care for infants, children and adolescents with disabilities. The Committee also provided $16.5 million for CDC’s autism programs, which include the Centers for Autism and Developmental Disabilities Epidemiology (CADDRE) and the Autism and Developmental Disabilities Monitoring (ADDM) Network. The House also provided $16.5 million for these programs.
Because funding levels for autism are different in the House and Senate bills, they will need to be worked out in a conference committee. ASA will be working diligently to ensure that autism activities receive the resources they need.
Other Critical Programs Funded
The Senate Labor, Health and Human Services and Education Appropriations bill also included increases for other programs of interest to the autism community. The legislation provided $11.24 billion for Special Education State Grants, a 4.2 percent increase over FY 2007, and $540 million to Special Education Grants for Infants and Families, a 3.1 percent increase over last year.
Programs under the Developmental Disabilities Act also saw a significant increase of 11 percent in the FY 2008 bill. The legislation included $2 million in new funding to support a National Clearinghouse and Technical Assistance Center to promote leadership by families of children with disabilities in the design and improvement of family support services.
Unfortunately, neither the House nor the Senate included funding for the newly authorized Lifespan Respite Care Act. This is a great disappointment for the disability community, as the legislation has broad bipartisan support. While funding for this year is now unlikely, ASA will continue to work with its allies in the disability community to see that this important program receives the funding it needs.
Senate Fully Funds the Combating Autism Act
The Senate Labor, Health and Human Services and Education Appropriations Committee approved its version of the FY 2008 spending bill, including a 52 percent increase for autism-related activities at the CDC and Health and Resources Services Administration. This is the full amount authorized for these programs under the Combating Autism Act.
Specifically, the bill provides $37 million for the Neurodevelopmental Disabilities Residency Program and the Developmental-Behavioral Pediatrics Training Program, which both provide long-term, graduate-level interdisciplinary training, as well as services and care for infants, children and adolescents with disabilities. The Committee also provided $16.5 million for CDC’s autism programs, which include the Centers for Autism and Developmental Disabilities Epidemiology (CADDRE) and the Autism and Developmental Disabilities Monitoring (ADDM) Network. The House also provided $16.5 million for these programs.
Because funding levels for autism are different in the House and Senate bills, they will need to be worked out in a conference committee. ASA will be working diligently to ensure that autism activities receive the resources they need.
Other Critical Programs Funded
The Senate Labor, Health and Human Services and Education Appropriations bill also included increases for other programs of interest to the autism community. The legislation provided $11.24 billion for Special Education State Grants, a 4.2 percent increase over FY 2007, and $540 million to Special Education Grants for Infants and Families, a 3.1 percent increase over last year.
Programs under the Developmental Disabilities Act also saw a significant increase of 11 percent in the FY 2008 bill. The legislation included $2 million in new funding to support a National Clearinghouse and Technical Assistance Center to promote leadership by families of children with disabilities in the design and improvement of family support services.
Unfortunately, neither the House nor the Senate included funding for the newly authorized Lifespan Respite Care Act. This is a great disappointment for the disability community, as the legislation has broad bipartisan support. While funding for this year is now unlikely, ASA will continue to work with its allies in the disability community to see that this important program receives the funding it needs.
Friday, June 29, 2007
Changing the World...
One bathroom at a time...
This is a funny story. A few weeks ago, the first week Signal Hill's pool was open, my mom and I took the boys there and then over to Walmart for McDonalds and to shop. Jimmy had an accident in the aisle. This was actually the second time it happened. He was terrified of the bathroom - it had one of those sensor devices that flushes a very powerful and loud rush of water when triggered. Like I said, it wasn't the first time it happened, but I was so frustrated, I actually said something to the manager on duty, a guy named Roy. I asked him if they would consider installing a more traditional, less noisy flushing toilet in the family bathroom for Jimmy. He isn't the first autistic child to be scared of a public toilet. Heck, "normal" kids are scared of these things. It's not an uncommon complaint. He said he would talk to the people from corporate. I followed up with him a few days later and he said it was a nonstarter for sanitary reasons. Not like it is sanitary to have my kid peeing in the middle of the store. I decided to press on, figuring it was an ADA issue, at least in my mind, for my child. I didn't know where to begin, but I intended to follow on with it over the summer.
I was in the store again yesterday and approached someone working on the renovation. This woman happened to be from the corporate office. I explained my concerns to her and she gave me the number of the construction manager overseeing the renovation in Arkansas. His name was Cliff. I was surprised that he was very interested and sympathetic to what I had to say. He said he would look into it and probably get back to me after the Fourth of July. Instead, he called today. He tossed it around corporate and basically said that I needed to go back to the store and talk to Tye, the store manager, because he had to be initiated at that level. I cruised back into Walmart during the lunch hour today. I met Tye, who had not only spoken to Cliff but the woman I had spoken to the day before... he had already ordered the toilet. It should arrive in about two weeks and will replace the DeathFlush. I was stunned. I figured it would be this big battle, but they embraced my concerns immediately. I am completely blown away.
If every battle was so easy. Thank you Walmart, especially Cliff and Tye. I am just amazed.
This is a funny story. A few weeks ago, the first week Signal Hill's pool was open, my mom and I took the boys there and then over to Walmart for McDonalds and to shop. Jimmy had an accident in the aisle. This was actually the second time it happened. He was terrified of the bathroom - it had one of those sensor devices that flushes a very powerful and loud rush of water when triggered. Like I said, it wasn't the first time it happened, but I was so frustrated, I actually said something to the manager on duty, a guy named Roy. I asked him if they would consider installing a more traditional, less noisy flushing toilet in the family bathroom for Jimmy. He isn't the first autistic child to be scared of a public toilet. Heck, "normal" kids are scared of these things. It's not an uncommon complaint. He said he would talk to the people from corporate. I followed up with him a few days later and he said it was a nonstarter for sanitary reasons. Not like it is sanitary to have my kid peeing in the middle of the store. I decided to press on, figuring it was an ADA issue, at least in my mind, for my child. I didn't know where to begin, but I intended to follow on with it over the summer.
I was in the store again yesterday and approached someone working on the renovation. This woman happened to be from the corporate office. I explained my concerns to her and she gave me the number of the construction manager overseeing the renovation in Arkansas. His name was Cliff. I was surprised that he was very interested and sympathetic to what I had to say. He said he would look into it and probably get back to me after the Fourth of July. Instead, he called today. He tossed it around corporate and basically said that I needed to go back to the store and talk to Tye, the store manager, because he had to be initiated at that level. I cruised back into Walmart during the lunch hour today. I met Tye, who had not only spoken to Cliff but the woman I had spoken to the day before... he had already ordered the toilet. It should arrive in about two weeks and will replace the DeathFlush. I was stunned. I figured it would be this big battle, but they embraced my concerns immediately. I am completely blown away.
If every battle was so easy. Thank you Walmart, especially Cliff and Tye. I am just amazed.
Jimmy and Paris
Not Hilton. I cat sat for a friend last weekend and took Jimmy along. He made a friend.
Wednesday, June 27, 2007
Scientists eye an enzyme as target in fighting autism
Scientists eye an enzyme as target in fighting autism
Wed Jun 27, 9:11 AM ET
Associated Press
US researchers have reversed the symptoms of mental retardation and autism in mice by inhibiting an enzyme that affects the connections between brain cells, researchers said Wednesday.
In a series of experiments on mice, the MIT investigators showed that they could undo the brain damage seen in a condition called Fragile X syndrome by inhibiting a key brain chemical called PAK.
In humans, Fragile X syndrome (FXS) is the leading cause of mental retardation and the most common genetic cause of autism -- the complex and devastating developmental disorder that is now being diagnosed in increasing numbers of children.
The study raises the intriguing possibility that the brain damage seen in children with the condition can be rolled back and identifies a specific target for potential drug therapies.
"It opens up a new avenue for drug research to treat this condition," said Susumu Tonegawa, a neuroscientist at the Massachusetts Institute of Technology in Cambridge, Massachusetts, and lead author of the paper.
MIT researchers began by creating a batch of mice that had been genetically modified to have Fragile X, a condition in which the neurons of the brain are structurally abnormal and functionally impaired compared to regular nerve cells.
These transgenic mice had many of the behavioral problems seen in kids with the condition: hyperactivity, attention deficits, repetitive behaviors and poor social skills.
The investigators then cross-bred these mice with another batch of mice that had been genetically modified to inhibit the activity of the PAK (p21-activated kinase) enzyme which is instrumental in shaping the formation of neuronal connections in the brain.
The researchers knew that when PAK was inactivated, the mice developed neurons that had short, fat dendritic spines, with a higher-than-usual capacity for relaying the electrical impulses that pass between brain cells.
In other words, the shape and function of the dendritic spines in the PAK mice was just the reverse of those seen in the brain cells of the mice with Fragile X syndrome.
The researchers gambled that the two abnormalities would cancel each other out, and that's exactly what the experiment showed.
The cross-bred mice had been genetically engineered so that the inactivation of the PAK enzyme began two weeks into the mouse's life cycle, which in human terms would be several years after birth.
Tests and autopsies showed that the PAK-blocking action restored electrical communication between neurons in the brains of the double mutant mice, correcting their behavioral abnormalities in the process.
"This is very exciting because it suggests that PAK inhibitors could be used for therapeutic purposes to reverse already established mental impairments in fragile X children," said Eric Klann, a professor at New York University's Center for Neural Science.
The study was conducted by Tonegawa and a postdoctoral student at MIT's Picower Institute for Learning and Memory and appears in this week's edition of the Proceedings of the National Academy of Sciences.
Wed Jun 27, 9:11 AM ET
Associated Press
US researchers have reversed the symptoms of mental retardation and autism in mice by inhibiting an enzyme that affects the connections between brain cells, researchers said Wednesday.
In a series of experiments on mice, the MIT investigators showed that they could undo the brain damage seen in a condition called Fragile X syndrome by inhibiting a key brain chemical called PAK.
In humans, Fragile X syndrome (FXS) is the leading cause of mental retardation and the most common genetic cause of autism -- the complex and devastating developmental disorder that is now being diagnosed in increasing numbers of children.
The study raises the intriguing possibility that the brain damage seen in children with the condition can be rolled back and identifies a specific target for potential drug therapies.
"It opens up a new avenue for drug research to treat this condition," said Susumu Tonegawa, a neuroscientist at the Massachusetts Institute of Technology in Cambridge, Massachusetts, and lead author of the paper.
MIT researchers began by creating a batch of mice that had been genetically modified to have Fragile X, a condition in which the neurons of the brain are structurally abnormal and functionally impaired compared to regular nerve cells.
These transgenic mice had many of the behavioral problems seen in kids with the condition: hyperactivity, attention deficits, repetitive behaviors and poor social skills.
The investigators then cross-bred these mice with another batch of mice that had been genetically modified to inhibit the activity of the PAK (p21-activated kinase) enzyme which is instrumental in shaping the formation of neuronal connections in the brain.
The researchers knew that when PAK was inactivated, the mice developed neurons that had short, fat dendritic spines, with a higher-than-usual capacity for relaying the electrical impulses that pass between brain cells.
In other words, the shape and function of the dendritic spines in the PAK mice was just the reverse of those seen in the brain cells of the mice with Fragile X syndrome.
The researchers gambled that the two abnormalities would cancel each other out, and that's exactly what the experiment showed.
The cross-bred mice had been genetically engineered so that the inactivation of the PAK enzyme began two weeks into the mouse's life cycle, which in human terms would be several years after birth.
Tests and autopsies showed that the PAK-blocking action restored electrical communication between neurons in the brains of the double mutant mice, correcting their behavioral abnormalities in the process.
"This is very exciting because it suggests that PAK inhibitors could be used for therapeutic purposes to reverse already established mental impairments in fragile X children," said Eric Klann, a professor at New York University's Center for Neural Science.
The study was conducted by Tonegawa and a postdoctoral student at MIT's Picower Institute for Learning and Memory and appears in this week's edition of the Proceedings of the National Academy of Sciences.
Sunday, June 24, 2007
A little No Doubt to kick off the week
I have decided to let Gwen help relieve my stress. The band joined her on the last night of her solo tour for the encore. I love them!!!
The End...
Of a very long weekend. Hopefully this week will be a little less stressful. Then again, summer school starts... Who am I kidding?
Saturday, June 23, 2007
Enjoy the silence...
Before I found out about my summer school contract, I was afraid I would wind up with nothing, so I picked up a few shifts at the reference desk of my old employer. I am sitting here, working on lesson plans, enjoying the peace. It is really quiet. I forgot what quiet is like. Over the last year, I worked in a completely open library space in the middle of an elementary school. No quiet there. Certainly none at home. I almost expect someone to come through screaming, because that's what I am used to.
Christine has departed and I am left again with my kids. It's been a great week, but I can't wait to have Jacob back in daycare. Jimmy has another week in before summer school, so he is going to Parks and Rec for the mornings this week. Rosa will be around for him, so I have no worries about transition. Therapy kicks in earnest next week, so I will be home in the afternoon, doing lesson planning, packing, and painting. At least I hope too.
Christine has departed and I am left again with my kids. It's been a great week, but I can't wait to have Jacob back in daycare. Jimmy has another week in before summer school, so he is going to Parks and Rec for the mornings this week. Rosa will be around for him, so I have no worries about transition. Therapy kicks in earnest next week, so I will be home in the afternoon, doing lesson planning, packing, and painting. At least I hope too.
Thursday, June 21, 2007
Wednesday, June 20, 2007
First week of summer...
I have had both boys home with me. Christine, my niece, has been around to cover for me when I have meetings and stuff - she is doing a great job! We have taken them to the pool - Jimmy still won't slide, but he really likes the lazy river. His therapist came with us (session at the pool and McDonalds) and he started a quasi conversation with her about the three of us in the lazy river swimming and his recent trip to the bowling alley before school let out. It was "Mrs. Grizzard, Mr. Booty, Sonia, bowl, ball" - words strung together, not formally structured. What it represents is huge, though. We have started plotting a bedtime routine and the food plan will begin soon as well.
Jacob will start his new school on Monday. Childtime reduced the fee after my complaint, but Jacob now has his heart set on going to Cradle to Crayons. I have to let him try. Jimmy starts summer school the following week, so he will be at Parks and Rec with Rosa for next week. I enjoy the extra time with them, but it reminds me how much they are to handle. Hopefully it's better when they are older.
More later.
Jacob will start his new school on Monday. Childtime reduced the fee after my complaint, but Jacob now has his heart set on going to Cradle to Crayons. I have to let him try. Jimmy starts summer school the following week, so he will be at Parks and Rec with Rosa for next week. I enjoy the extra time with them, but it reminds me how much they are to handle. Hopefully it's better when they are older.
More later.
Friday, June 15, 2007
A long week
Where to begin... it was the last week of school this week, for both Jimmy and myself. We had FAPT on Monday. Services will continue through September 17th. We get 12 hours a week of in-home therapy, 2 hours a month of parent training and five hours of consult in summer school. It's great. Maybe the only thing I would ask for is a little more parent training. They will work on bedtime routine and the whole food selectivity thing over the summer. I will be around for most of the sessions, so I will have the opportunity to learn. I am really excited about that.
Jimmy had his school concert - Kindergarten's "Songs of Friendship." He sang a little, but mostly I was pleased he stood on the riser for the whole time. I know they were slipping him fruit snacks to reinforce for appropriate behavior. Whatever works. At the end of show, he actually winked at me. Or maybe it was a visual stim. I don't know, but it was very funny and cute! I am very proud of the progress he has made. Last year, he wouldn't have stood there at all. He would have been running around, stripping naked!
Of course, today was the last day of school. Jimmy has finished kindergarten. It scarely seems that it has been long enough to have a rising first grader. Actually, if he wasn't autistic, I wouldn't - I would never have sent him to school at five, as I think having a boy at the young end of the school cut off is detrimental for them socially and academically. But Jimmy is there, he is who he is, and he has done well. I love him (and Jacob too, of course) with more love than I could have possibly imagined for another living being. That's saying a lot - anyone who knows me knows that I love probably too deeply, too much in general. I can't love these boys enough.
Incidentially, it was also Jacob's last day of school as well. I made the difficult decision to pull him from Childtime. They have had many management changes over the past year. I have taken it in stride, even when mistake were made in the care of my own child. Things have improved of late - they have two new wonderful managers, along with some great new teachers. Jacob's teacher recently returned from disabilities from injuries sustained in a serious car accident. They were doing more with curriculum and really making progress in the center.
Ultimately, the corporate and regional managers made the unfortunate decision to add a summer surcharge of $25 a week for "curriculum enrichments." In my opinion, curriculum needs to be effectively offered, explained, and assessed before you can enrich it. Kindercare charged a flat $50 to cover their special summer programs for preschoolers. This would have totalled $250. In light of everything that has happened since August, I felt that it was poor form to nickel and dime us, so I pulled him. I took him back to Kindercare and a place called Cradle 2 Crayons. He said he wanted to go to the latter, so he starts the 25th. I don't feel great about yanking him, but I felt that I had no choice, that to stay was just allow myself as a parent to be exploited financially for no sensible reason.
My niece is coming to help me with them next week - I don't work a full schedule, so she will cover for my summer school meetings and trainings and such. When I am not busy, we will hang out. I am looking forward to it. I also have a shift at Mercer's reference desk next Saturday and ALA next Sunday. A busy but enjoyable week...
As for my last day of school... I generally don't post about my job. I would like to say that I have never been more challenged, more stressed, or worked harder at any job than I have at being an elementary librarian. I also have never found anything to be more professionally and personally rewarding. I love my job, I love my colleagues, and I love my students. As I said before, i generally love too deeply and too much. With kids, you just can't. I would also say that I have never felt more loved than I have in my school with the adults and children that I am blessed to work with everyday. I know understand what joy truly is - it's been their gift to me.
Jimmy had his school concert - Kindergarten's "Songs of Friendship." He sang a little, but mostly I was pleased he stood on the riser for the whole time. I know they were slipping him fruit snacks to reinforce for appropriate behavior. Whatever works. At the end of show, he actually winked at me. Or maybe it was a visual stim. I don't know, but it was very funny and cute! I am very proud of the progress he has made. Last year, he wouldn't have stood there at all. He would have been running around, stripping naked!
Of course, today was the last day of school. Jimmy has finished kindergarten. It scarely seems that it has been long enough to have a rising first grader. Actually, if he wasn't autistic, I wouldn't - I would never have sent him to school at five, as I think having a boy at the young end of the school cut off is detrimental for them socially and academically. But Jimmy is there, he is who he is, and he has done well. I love him (and Jacob too, of course) with more love than I could have possibly imagined for another living being. That's saying a lot - anyone who knows me knows that I love probably too deeply, too much in general. I can't love these boys enough.
Incidentially, it was also Jacob's last day of school as well. I made the difficult decision to pull him from Childtime. They have had many management changes over the past year. I have taken it in stride, even when mistake were made in the care of my own child. Things have improved of late - they have two new wonderful managers, along with some great new teachers. Jacob's teacher recently returned from disabilities from injuries sustained in a serious car accident. They were doing more with curriculum and really making progress in the center.
Ultimately, the corporate and regional managers made the unfortunate decision to add a summer surcharge of $25 a week for "curriculum enrichments." In my opinion, curriculum needs to be effectively offered, explained, and assessed before you can enrich it. Kindercare charged a flat $50 to cover their special summer programs for preschoolers. This would have totalled $250. In light of everything that has happened since August, I felt that it was poor form to nickel and dime us, so I pulled him. I took him back to Kindercare and a place called Cradle 2 Crayons. He said he wanted to go to the latter, so he starts the 25th. I don't feel great about yanking him, but I felt that I had no choice, that to stay was just allow myself as a parent to be exploited financially for no sensible reason.
My niece is coming to help me with them next week - I don't work a full schedule, so she will cover for my summer school meetings and trainings and such. When I am not busy, we will hang out. I am looking forward to it. I also have a shift at Mercer's reference desk next Saturday and ALA next Sunday. A busy but enjoyable week...
As for my last day of school... I generally don't post about my job. I would like to say that I have never been more challenged, more stressed, or worked harder at any job than I have at being an elementary librarian. I also have never found anything to be more professionally and personally rewarding. I love my job, I love my colleagues, and I love my students. As I said before, i generally love too deeply and too much. With kids, you just can't. I would also say that I have never felt more loved than I have in my school with the adults and children that I am blessed to work with everyday. I know understand what joy truly is - it's been their gift to me.
Monday, June 11, 2007
Children with autism get day in court
"Children with autism get day in court
By ANDREW BRIDGES, Associated Press Writer
Mon Jun 11, 12:46 PM ET
The parents of 12-year-old Michelle Cedillo asked a federal court Monday to find that their child's autism was caused by common childhood vaccines, a precedent-setting case that could pave the way for thousands of autistic children to receive compensation from a government fund set up to help people injured by the shots.
Wearing noise-canceling headphones, Michelle, of Yuma, Ariz., was brought into the courtroom in a wheelchair at the start of the proceedings before the U.S. Court of Federal Claims. She stayed only a short time.
Her parents, Theresa and Michael Cedillo, allege a preservative called thimerosal that had been used in vaccines weakened their daughter's immune system and prevented her body from clearing the measles virus after she was immunized for the disease at age 15 months.
Today, Michelle suffers from a litany of health problems, including severe autism, inflammatory bowel disease, glaucoma and epilepsy.
"We hope to find out what happened and hopefully get the help she needs," said Theresa Cedillo, who takes care of her daughter full time at home.
Special Master George Hastings Jr. thanked the family for allowing theirs to be the first of nine test cases that will help guide the resolution of some of the nearly 5,000 similar claims lodged with the government.
"Clearly the story of Michelle's life is a tragic one," Hastings said in pledging to listen carefully to the evidence presented during the three-week hearing.
The burden of proof is easier than in a traditional court. Plaintiffs only have to prove that a link between autism and the shots is more likely than not, based on a preponderance of evidence.
Large scientific studies have found no association between autism and vaccines containing thimerosal.
But many parents say their children's symptoms did not show up until after their children received the vaccines, required by many states for admission to school.
"These are families who followed the rules. These are families who brought children in for vaccines. These are families who immunized their children," said the Cedillos' attorney, Thomas Powers.
Powers said that the science regarding a possible vaccine-autism link is in dispute.
Government attorney Vincent Matanoski dismissed much of what the plaintiffs are expected to present as conjecture or speculation.
"You'll find their hypotheses untested or, when tested, have been found false," Matanoski said.
Since 1999, more than 4,800 families have filed claims with the government alleging their children developed autism as a result of routine vaccinations. Most contend that a preservative called thimerosal is to blame for the impaired social interaction typical of the disorder.
The court is being asked to decide whether there is a link between autism and childhood vaccines. If it finds one exists, the families could be eligible for compensation under the Vaccine Injury Compensation Fund, a program established by Congress to ensure an adequate supply of vaccines by safeguarding manufacturers from lawsuits. Under the program, people injured by vaccines receive compensation through a special trust fund.
Autism is characterized by impaired social interaction. Those affected often have trouble communicating, and they exhibit unusual or severely limited activities and interests. Classic symptoms of mercury poisoning include anxiety, fatigue and abnormal irritation, as well as cognitive and motor dysfunction.
Monday's case addresses the theory that the cause of autism is the measles, mumps and rubella vaccine in combination with other vaccines containing thimerosal. The preservative, about 50 percent mercury by weight, is no longer found in routine childhood vaccines but is used in some flu shots.
In July 1999, the U.S. government asked vaccine manufacturers to eliminate or reduce, as expeditiously as possible, the mercury content of their vaccines to avoid any possibility of infants who receive vaccines being exposed to more mercury than is recommended by federal guidelines."
I have never been a big believer in the vaccine theory - I am all for pursuing answers, but I have never thought that the onset on Jimmy's autism was related to his immunizations. Now ear infections - don't get me started on those. There are questions to be answered, but I don't think it is all in one place.
By ANDREW BRIDGES, Associated Press Writer
Mon Jun 11, 12:46 PM ET
The parents of 12-year-old Michelle Cedillo asked a federal court Monday to find that their child's autism was caused by common childhood vaccines, a precedent-setting case that could pave the way for thousands of autistic children to receive compensation from a government fund set up to help people injured by the shots.
Wearing noise-canceling headphones, Michelle, of Yuma, Ariz., was brought into the courtroom in a wheelchair at the start of the proceedings before the U.S. Court of Federal Claims. She stayed only a short time.
Her parents, Theresa and Michael Cedillo, allege a preservative called thimerosal that had been used in vaccines weakened their daughter's immune system and prevented her body from clearing the measles virus after she was immunized for the disease at age 15 months.
Today, Michelle suffers from a litany of health problems, including severe autism, inflammatory bowel disease, glaucoma and epilepsy.
"We hope to find out what happened and hopefully get the help she needs," said Theresa Cedillo, who takes care of her daughter full time at home.
Special Master George Hastings Jr. thanked the family for allowing theirs to be the first of nine test cases that will help guide the resolution of some of the nearly 5,000 similar claims lodged with the government.
"Clearly the story of Michelle's life is a tragic one," Hastings said in pledging to listen carefully to the evidence presented during the three-week hearing.
The burden of proof is easier than in a traditional court. Plaintiffs only have to prove that a link between autism and the shots is more likely than not, based on a preponderance of evidence.
Large scientific studies have found no association between autism and vaccines containing thimerosal.
But many parents say their children's symptoms did not show up until after their children received the vaccines, required by many states for admission to school.
"These are families who followed the rules. These are families who brought children in for vaccines. These are families who immunized their children," said the Cedillos' attorney, Thomas Powers.
Powers said that the science regarding a possible vaccine-autism link is in dispute.
Government attorney Vincent Matanoski dismissed much of what the plaintiffs are expected to present as conjecture or speculation.
"You'll find their hypotheses untested or, when tested, have been found false," Matanoski said.
Since 1999, more than 4,800 families have filed claims with the government alleging their children developed autism as a result of routine vaccinations. Most contend that a preservative called thimerosal is to blame for the impaired social interaction typical of the disorder.
The court is being asked to decide whether there is a link between autism and childhood vaccines. If it finds one exists, the families could be eligible for compensation under the Vaccine Injury Compensation Fund, a program established by Congress to ensure an adequate supply of vaccines by safeguarding manufacturers from lawsuits. Under the program, people injured by vaccines receive compensation through a special trust fund.
Autism is characterized by impaired social interaction. Those affected often have trouble communicating, and they exhibit unusual or severely limited activities and interests. Classic symptoms of mercury poisoning include anxiety, fatigue and abnormal irritation, as well as cognitive and motor dysfunction.
Monday's case addresses the theory that the cause of autism is the measles, mumps and rubella vaccine in combination with other vaccines containing thimerosal. The preservative, about 50 percent mercury by weight, is no longer found in routine childhood vaccines but is used in some flu shots.
In July 1999, the U.S. government asked vaccine manufacturers to eliminate or reduce, as expeditiously as possible, the mercury content of their vaccines to avoid any possibility of infants who receive vaccines being exposed to more mercury than is recommended by federal guidelines."
I have never been a big believer in the vaccine theory - I am all for pursuing answers, but I have never thought that the onset on Jimmy's autism was related to his immunizations. Now ear infections - don't get me started on those. There are questions to be answered, but I don't think it is all in one place.
Saturday, June 09, 2007
A Big Saturday
My school carnival, a trip to a pool. I started the morning feeling lousy, but I am glad I got my second wind. Jimmy floated in a tube, by himself, on the lazy river. I was never far away, but it was still liberating. I can take him in the lazy river and it's all okay. He's not scared, he enjoys it, I enjoy walking in the current. His progress often equates freedom for me. We are both happy.
Friday, June 08, 2007
Jimmy's Latest Brillance
Jimmy told both my mom and my sister that he loved them for the first time on the phone this week. I neglected to mention it in favor of the bowling post. No, it isn't a reflection of priorities. Bowling came with pictures.
Thursday, June 07, 2007
Jimmy Bowls a 69
Jimmy and his class went bowling. I was able to break free to chaperone. I was surprised - he really seems to enjoy it. Unfortunately, 69 was the worst score. The other two kids scored in the 80s. Maybe his mom "helped" too much!
Tuesday, June 05, 2007
Jimmy's PALS Scores
PALS stands for Phonological Awareness Literacy Screening. It is a very basic reading test, assessing phonomenic awareness, phonics, fluency, and core reading vocabulary. For Kindergarten, the fall benchmark score is 28 and the spring is 81. Jimmy's fall test was a 7. His spring test was a 94. I think is testimony to both the instruction and the consult services brought in for his attention and behavior issues. I am just astounded at the progress this reflects in him. I am stunned. He just amazes me all the time. Of course, as I am typing this, he is playing in the toilet.
Sunday, June 03, 2007
South Carolina Health Plans to Cover Autism
S.C. health plans to cover autism
By Savannah Morning News
Created 2007-06-01 23:30
Kirsten Singleton | Saturday, June 2, 2007 at 12:30 am
COLUMBIA, S.C. [1] - For families of autistic children, the financial options are few and often unattractive. Ask grandparents for help. Take out a second or third mortgage. Limit their children's treatment or pay for it themselves, sometimes at an annual cost of $50,000 to $60,000.
"A lot of families, in most cases, Mom stays home and tries to learn the best she can to try and do it (the treatment) on her own," said Craig Stoxen, president of the South Carolina Autism Society.
Now, though, the state is stepping in to offer help.
Among the 47 S.C. bills that became state law this week is a provision that requires health insurers to cover disorders such as autism and Asperger's syndrome.
There are exceptions and exemptions, such as for small businesses, but the state health plan is included.
"All I know is, being stuck in the middle with two autistic children, it's as necessary for insurers to cover (autistic children) as it is if they had diabetes or muscular dystrophy or cancer," said Aiken resident Amy Weeks, who has two autistic teenagers.
The requirement is projected to cost employers about $10.6 million annually, including $6.57 million to the state's general fund.
Sen. Dick Elliott, D-North Myrtle Beach, hopes state agencies can use discretionary funds to cover the cost this year so the state doesn't have to wait for next year's budgeting process to start funding the plan.
Elliott said it'll be cheaper for the state to pay to treat autistic children than to pay for their institutionalization if treatment was unavailable.
"It's comparing nickels and dimes to hundred-dollar bills as far as the cost to taxpayers and cost to the state," he said.
By Savannah Morning News
Created 2007-06-01 23:30
Kirsten Singleton | Saturday, June 2, 2007 at 12:30 am
COLUMBIA, S.C. [1] - For families of autistic children, the financial options are few and often unattractive. Ask grandparents for help. Take out a second or third mortgage. Limit their children's treatment or pay for it themselves, sometimes at an annual cost of $50,000 to $60,000.
"A lot of families, in most cases, Mom stays home and tries to learn the best she can to try and do it (the treatment) on her own," said Craig Stoxen, president of the South Carolina Autism Society.
Now, though, the state is stepping in to offer help.
Among the 47 S.C. bills that became state law this week is a provision that requires health insurers to cover disorders such as autism and Asperger's syndrome.
There are exceptions and exemptions, such as for small businesses, but the state health plan is included.
"All I know is, being stuck in the middle with two autistic children, it's as necessary for insurers to cover (autistic children) as it is if they had diabetes or muscular dystrophy or cancer," said Aiken resident Amy Weeks, who has two autistic teenagers.
The requirement is projected to cost employers about $10.6 million annually, including $6.57 million to the state's general fund.
Sen. Dick Elliott, D-North Myrtle Beach, hopes state agencies can use discretionary funds to cover the cost this year so the state doesn't have to wait for next year's budgeting process to start funding the plan.
Elliott said it'll be cheaper for the state to pay to treat autistic children than to pay for their institutionalization if treatment was unavailable.
"It's comparing nickels and dimes to hundred-dollar bills as far as the cost to taxpayers and cost to the state," he said.
No Group Discount for Autism Care
An article in today's Post about a family with autistic triplets. I guess that's how my situation could be worse.
Saturday, June 02, 2007
I'm going to ALA
One more thing... I am going to ALA on Sunday, June 24th. It's here in DC. I have an events pass, but might register for the programming if time and money allow. There is a reception for UT from about 7 - 9, so it will be a full day. I have friends from grad school, namely my partner in crime Susan J (we presented together at a couple of conferences) will be here. I am looking forward to seeing her.
Should be fun. Can't remember the last time I took Metro anywhere!
Should be fun. Can't remember the last time I took Metro anywhere!
Jimmy's First Movie... sort of
Well, I wound up taking both boys to Shrek 3, along Diana, Gage, and his mom. Jimmy sat through the trailers with complete attention. He was in my lap and not moving, but it was okay. About 30 minutes into the movie, he was done. He wasn't horrible, but I didn't want to push it, so we left. Regal Cinema very nicely gave me my money back when I explained the situation. The two us went shopping at Kohl's and Old Navy while we were waiting. I was sad we didn't see the movie, but all things consider... well, 40 minutes for him of sitting still and attention in a loud theater, which is a completely new setting to him, was amazing!
A Reprieve
Next weekend is the last weekend of soccer. I just got the e-mail. Not that our season was particular long or anything, but I should never have taken it on as a committment - and by committment, I mean the coaching part. Just adds another level of stress. I am extremely happy. Now I can find a swim class for Jimmy. I won't be in charge of that!
Friday, June 01, 2007
Happy Friday!
A weekend full of activities. Soccer on Saturday. Taking Jacob and his friend to Shrek 3. Jimmy has therapy on Sunday and I might try to take him to the pool at Signal Hill, which should be open. Weekends don't feel like days off. Then again, vacations don't feel like vacations either - just changes of venue with less resources. The joy of having kids.
Thursday, May 31, 2007
Jacob's First Playdate
We haven't had many proper playdates for Jacob. Sort of a result of the whole all consuming nature of Jimmy's care. But Jacob has a friend at daycare who attends Jimmy's school as a kindergartener. I am taking the two of them to see Shrek 3 on Saturday. I called his mom to set it up. I knew this boy knew Jimmy from school and had made some effort to play with him, enough that he asked me why Jimmy "talked weird." The boy wasn't being mean, he just didn't know how to express what he was thinking. Turns out that he sees Jimmy everyday for "specials" - things like art, music, PE, and the library - as he is part of the class that Jimmy is mainstreamed into for these activities.
Jimmy apparently has a friend too, someone named Dalton. Apparently, Dalton has told Jimmy's therapist that he is Jimmy's best friend. Jimmy yammers on about him too, repeatedly saying his name. Guess I am going to have to try to set them up too. Hopefully, the parents will be game. I always worry about that.
Jimmy apparently has a friend too, someone named Dalton. Apparently, Dalton has told Jimmy's therapist that he is Jimmy's best friend. Jimmy yammers on about him too, repeatedly saying his name. Guess I am going to have to try to set them up too. Hopefully, the parents will be game. I always worry about that.
Sunday Sessions
We have been getting a lot of weekend therapy for Jimmy lately. You are easily unaware of how much is getting done and how much time is being spent your kid when services are being delivered at school and daycare. It becomes sort of intrusive when you have people in your own home constantly. I am very comfortable with our long term therapist - she appreciates what we go through. Lately, however, there have been new therapists training with her. It is so unnerving to me to have strangers in my home.
Monday, May 28, 2007
A Brilliant 80's Song...
Rick Astley "Never Going to Give You Up" from late last year in Britian. I think he sounds better than he did 20 years ago. And I don't think he has aged a day.
Sunday, May 27, 2007
Digging out...
I have neglected my bedroom, especially my closet for a very long time. I am taking a little break from cleaning it up.
Not much to say about today. My husband thinks that Jimmy has made a great deal of progress in May. I think he is right. Jimmy is more verbal, more responsive, and playing slightly less in his poop. He scored at or above grade level on his PALS test (it's basic phonics and literacy skills) in every area. I am was thrilled about that - since I do PALS at my job, it was something quantifiable that I understand. He sings in the kindergarten concert on June 13th. I am really dying to see it. His therapist Rachel will be there as well. I told her to bring enough kleenex for us both.
Happy Memorial Day.
Not much to say about today. My husband thinks that Jimmy has made a great deal of progress in May. I think he is right. Jimmy is more verbal, more responsive, and playing slightly less in his poop. He scored at or above grade level on his PALS test (it's basic phonics and literacy skills) in every area. I am was thrilled about that - since I do PALS at my job, it was something quantifiable that I understand. He sings in the kindergarten concert on June 13th. I am really dying to see it. His therapist Rachel will be there as well. I told her to bring enough kleenex for us both.
Happy Memorial Day.
Saturday, May 26, 2007
Both kids are asleep...
And we can't the UFC pay-per-view. Something is seriously messed up at Comcast. You can't even get through. Blah...
I really hate Comcast.
I really hate Comcast.
How I wound up a soccer coach...
Oh yeah, another reason why I have been too busy to post...
MASA got Jimmy's soccer team coach, but the coach (who is also the commissioner of the program) quit before it even got started and soliticed a parent volunteer. I was the only one to step, so I am soccer coach this year. I should scan the team photo. It's pretty cute.
I'm kind of miffed at MASA though. Previous seasons, we have been provided a coach and TOPSBuddies, kids earning volunteer credit by providing one on one assistance to the kids. Nothing this year. And it is impossible for me to do anything truly organized like drills when I am responsible for my own kid not running off. I am very frustrated and hope it doesn't happen again.
MASA got Jimmy's soccer team coach, but the coach (who is also the commissioner of the program) quit before it even got started and soliticed a parent volunteer. I was the only one to step, so I am soccer coach this year. I should scan the team photo. It's pretty cute.
I'm kind of miffed at MASA though. Previous seasons, we have been provided a coach and TOPSBuddies, kids earning volunteer credit by providing one on one assistance to the kids. Nothing this year. And it is impossible for me to do anything truly organized like drills when I am responsible for my own kid not running off. I am very frustrated and hope it doesn't happen again.
Friday, May 25, 2007
Memorial Day weekend...
Another posting lapse, but things have been a little crazy. We are considering putting our house on the market and buying one on the other side of town. I am not completely sold on the idea, as there is much to do to the place first. I am also not crazy about increasing our mortgage, but he insists that we won't be house poor. I am a little less convinces, but trying to not sweat it. We actually have to sell the place first.
Jacob had a stomach bug this week - I had to leave work early on Wednesday. I am supposed to move my collection into the new library soon. Jimmy graduates kindergarten in a few weeks. We are juggling therapy all summer. I am hoping for a summer school contract for some extra cash. There is a lot going on. I am frazzled.
It's got to get better.
Jacob had a stomach bug this week - I had to leave work early on Wednesday. I am supposed to move my collection into the new library soon. Jimmy graduates kindergarten in a few weeks. We are juggling therapy all summer. I am hoping for a summer school contract for some extra cash. There is a lot going on. I am frazzled.
It's got to get better.
Sunday, May 13, 2007
Microsoft and Home Depot cover ABA!!!!
In related news, I will never shop Lowe's again!
Families Changed Microsoft's View of Autism
By Amanda Spake
May 8, 2007
BRIAN ROSENBERG SUFFERS from autism. And while that term can describe a wide range of developmental problems, says Jon Rosenberg, Brian's father, "My son is at the severe end of the spectrum." At that level of severity, he explains, "Kids don't know how to imitate, and that's how most kids learn. It took weeks to teach my son to get himself a glass of water, months to teach him how to use a fork and spoon."
Brian has learned these skills by working one on one with a behavioral therapist, day in and day out, since his diagnosis. Behavioral therapy for autism can cost as much as $60,000 per year, a serious financial challenge for a family whose insurance won't cover it. Indeed, many families have no coverage for the services that autistic children need most. The Rosenbergs are lucky: Jon's employer, the software giant Microsoft (MSFT1), covers behavioral therapy as part of its health-benefits package. But that wasn't always the case — and the story of how the policies changed at the Redmond Empire is instructive for any family facing a costly medical problem.
Statistics collected yearly by the Department of Education show that the number of children between ages 6 and 21 with autism or autism-like developmental disabilities has increased by 500% in the last decade. A recent report by the federal Centers for Disease Control and Prevention shows that as many as one child in 150 is now diagnosed with an autism-type disorder. While doctors have been unable to explain the reasons behind this startling increase, research on how best to treat and teach autistic children has confirmed the value of an early intervention program that relies on intensive behavioral therapy. More than 500 medical studies published in the last two decades support the idea that behavioral techniques, focused on teaching everything from language and academics, to basic life skills, can help substantial numbers of preschool-age children with autism achieve intellectual, academic, communication, and social skills that approach normal range.
Yet, too often health insurers do not cover such treatment, and few corporate benefit managers are aware of the significant problems this gap in coverage creates for their employees who struggle to pay for their autistic children's therapy.
Jon Rosenberg was determined to change all that, if not in the world as a whole, at least in the world of Microsoft. "About eight of us parents got together in 1999 and were comparing notes on how behavioral therapy was effective for our autistic children," he recalls. They decided that each would send an email to the president of human resources at Microsoft. "Each of us told him about autism, how it affected our children, about behavioral therapy and what a great, positive impact it was having on our children and our families."
The company immediately promised to look into the issue — but it probably wouldn't have done so without prompting. "That started the dialogue," recalls Mark Stoppler, program manager for U.S. benefits at Microsoft. At the time, Stoppler says, very little was understood in the insurance and benefits world about autism or autism treatment. Coverage of speech therapy, physical, and occupational therapy was typically denied because insurers assumed that speech would eventually come to all children, and that occupational and physical therapy were appropriate treatments only for adults.
To its credit, Microsoft did not take those assumptions for granted. "We worked extensively with the University of Washington's autism center to get an understanding of the condition, the types of treatment available, which showed the most promise," explains Stoppler. The university provided background on Applied Behavioral Analysis, a type of behavior therapy for autism that has proven successful in many clinical studies. Once Microsoft decided ABA would be worth covering, the school helped the company design a benefit plan around the treatment.
Microsoft, a self-insured health-care provider, pays 80% of the cost of ABA. Because research suggests that the type of early intervention needed by most autistic kids required three years of intensive behavioral therapy, Microsoft imposes yearly and lifetime limits based on those assumptions. Microsoft recognizes and compensates for two levels of care: The benefit provides for a program manager who oversees each child's entire treatment program, as well as for the therapy assistants, who are the day-to-day providers of the therapy. Speech, occupational, and physical therapy recommended by the program manager are also covered at 80%.
To employees of Microsoft who have autistic children, the value of these benefits is almost incalculable. "This therapy is literally Brian's lifeline to the world the rest of us live in," says Jon Rosenberg. "It gives him a sense of control in his life. Brian is 14 now, and I can see by 20 or 25 he will have learned enough to have independence in his life." Better still, "Now, the world is not just a place making all of these demands on him that he doesn't understand, it's a place he can have fun, too."
Microsoft's approach to autism benefits remains more the exception than the rule. But a few other corporations have taken similar steps. Home Depot (HD2), for example, began covering the full range of treatment for childhood autism as part of its health insurance benefits for the company's 365,000 employees about eight years ago. Roughly a year and a half before autism coverage was added, employees who had been denied behavioral, speech, physical and occupational therapies for their autistic children had to appeal the denials, first to the company's insurance carriers, then to the company's benefits managers. And often, even the appeals were denied.
According to Illeana Connally, the company's vice-president for benefits, Home Depot eventually was persuaded by unhappy employees to look more deeply into the issue of autism. Connally and her staff consulted various research centers that specialize in the treatment of children and adolescents with developmental disabilities, including one that was particularly close to home: the Marcus Institute in Atlanta, which was originally founded through a gift from Bernard Marcus, the founder of Home Depot, and his wife. Home Depot eventually fashioned a package of autism benefits that was essentially written by medical experts from the Marcus Institute and the Kennedy Krieger Institute, a treatment and research center in Baltimore. The policy covers cognitive behavioral therapy, occupational therapy, speech therapy and physical therapy for children with autism, as well as for kids with Down Syndrome, cerebral palsy or a severe neurological or genetic disability.
Connally is hopeful that a wider array of companies will institute autism coverage in the future. Indeed, advocates of such care may have numbers on their side: The one major cost-benefit analysis of behavioral therapy for autism, a study published in 1998 in the journal Behavioral Interventions, suggested that the savings in unneeded social services could be substantial if every autistic child was offered these services. Using a model that assumed preschool children with autism would receive three years of early intensive behavioral intervention from age 2 until they entered school at age 5, the study concluded that by investing about $50,000 per child yearly for three years, more than $1 million per person would be saved by the time these children became 55-year-old adults. Since as many as 500,000 kids may be diagnosed with autism by 2010, early behavioral therapy looks like it could be a good investment.
Families Changed Microsoft's View of Autism
By Amanda Spake
May 8, 2007
BRIAN ROSENBERG SUFFERS from autism. And while that term can describe a wide range of developmental problems, says Jon Rosenberg, Brian's father, "My son is at the severe end of the spectrum." At that level of severity, he explains, "Kids don't know how to imitate, and that's how most kids learn. It took weeks to teach my son to get himself a glass of water, months to teach him how to use a fork and spoon."
Brian has learned these skills by working one on one with a behavioral therapist, day in and day out, since his diagnosis. Behavioral therapy for autism can cost as much as $60,000 per year, a serious financial challenge for a family whose insurance won't cover it. Indeed, many families have no coverage for the services that autistic children need most. The Rosenbergs are lucky: Jon's employer, the software giant Microsoft (MSFT1), covers behavioral therapy as part of its health-benefits package. But that wasn't always the case — and the story of how the policies changed at the Redmond Empire is instructive for any family facing a costly medical problem.
Statistics collected yearly by the Department of Education show that the number of children between ages 6 and 21 with autism or autism-like developmental disabilities has increased by 500% in the last decade. A recent report by the federal Centers for Disease Control and Prevention shows that as many as one child in 150 is now diagnosed with an autism-type disorder. While doctors have been unable to explain the reasons behind this startling increase, research on how best to treat and teach autistic children has confirmed the value of an early intervention program that relies on intensive behavioral therapy. More than 500 medical studies published in the last two decades support the idea that behavioral techniques, focused on teaching everything from language and academics, to basic life skills, can help substantial numbers of preschool-age children with autism achieve intellectual, academic, communication, and social skills that approach normal range.
Yet, too often health insurers do not cover such treatment, and few corporate benefit managers are aware of the significant problems this gap in coverage creates for their employees who struggle to pay for their autistic children's therapy.
Jon Rosenberg was determined to change all that, if not in the world as a whole, at least in the world of Microsoft. "About eight of us parents got together in 1999 and were comparing notes on how behavioral therapy was effective for our autistic children," he recalls. They decided that each would send an email to the president of human resources at Microsoft. "Each of us told him about autism, how it affected our children, about behavioral therapy and what a great, positive impact it was having on our children and our families."
The company immediately promised to look into the issue — but it probably wouldn't have done so without prompting. "That started the dialogue," recalls Mark Stoppler, program manager for U.S. benefits at Microsoft. At the time, Stoppler says, very little was understood in the insurance and benefits world about autism or autism treatment. Coverage of speech therapy, physical, and occupational therapy was typically denied because insurers assumed that speech would eventually come to all children, and that occupational and physical therapy were appropriate treatments only for adults.
To its credit, Microsoft did not take those assumptions for granted. "We worked extensively with the University of Washington's autism center to get an understanding of the condition, the types of treatment available, which showed the most promise," explains Stoppler. The university provided background on Applied Behavioral Analysis, a type of behavior therapy for autism that has proven successful in many clinical studies. Once Microsoft decided ABA would be worth covering, the school helped the company design a benefit plan around the treatment.
Microsoft, a self-insured health-care provider, pays 80% of the cost of ABA. Because research suggests that the type of early intervention needed by most autistic kids required three years of intensive behavioral therapy, Microsoft imposes yearly and lifetime limits based on those assumptions. Microsoft recognizes and compensates for two levels of care: The benefit provides for a program manager who oversees each child's entire treatment program, as well as for the therapy assistants, who are the day-to-day providers of the therapy. Speech, occupational, and physical therapy recommended by the program manager are also covered at 80%.
To employees of Microsoft who have autistic children, the value of these benefits is almost incalculable. "This therapy is literally Brian's lifeline to the world the rest of us live in," says Jon Rosenberg. "It gives him a sense of control in his life. Brian is 14 now, and I can see by 20 or 25 he will have learned enough to have independence in his life." Better still, "Now, the world is not just a place making all of these demands on him that he doesn't understand, it's a place he can have fun, too."
Microsoft's approach to autism benefits remains more the exception than the rule. But a few other corporations have taken similar steps. Home Depot (HD2), for example, began covering the full range of treatment for childhood autism as part of its health insurance benefits for the company's 365,000 employees about eight years ago. Roughly a year and a half before autism coverage was added, employees who had been denied behavioral, speech, physical and occupational therapies for their autistic children had to appeal the denials, first to the company's insurance carriers, then to the company's benefits managers. And often, even the appeals were denied.
According to Illeana Connally, the company's vice-president for benefits, Home Depot eventually was persuaded by unhappy employees to look more deeply into the issue of autism. Connally and her staff consulted various research centers that specialize in the treatment of children and adolescents with developmental disabilities, including one that was particularly close to home: the Marcus Institute in Atlanta, which was originally founded through a gift from Bernard Marcus, the founder of Home Depot, and his wife. Home Depot eventually fashioned a package of autism benefits that was essentially written by medical experts from the Marcus Institute and the Kennedy Krieger Institute, a treatment and research center in Baltimore. The policy covers cognitive behavioral therapy, occupational therapy, speech therapy and physical therapy for children with autism, as well as for kids with Down Syndrome, cerebral palsy or a severe neurological or genetic disability.
Connally is hopeful that a wider array of companies will institute autism coverage in the future. Indeed, advocates of such care may have numbers on their side: The one major cost-benefit analysis of behavioral therapy for autism, a study published in 1998 in the journal Behavioral Interventions, suggested that the savings in unneeded social services could be substantial if every autistic child was offered these services. Using a model that assumed preschool children with autism would receive three years of early intensive behavioral intervention from age 2 until they entered school at age 5, the study concluded that by investing about $50,000 per child yearly for three years, more than $1 million per person would be saved by the time these children became 55-year-old adults. Since as many as 500,000 kids may be diagnosed with autism by 2010, early behavioral therapy looks like it could be a good investment.
Soccer...
We had our second "game." He is doing better than he used too - he is more interested in kicking the ball, but it is still a solitary activity and one of a relatively short duration. His soccer pictures were very cute... Only if I had a working scanner!
For Mother's Day, I met my mom at the mall with the boys. We had lunch and shopped for a couple of hours. My mom commented on how Jimmy was doing better in walking with her. And we got haircuts - by we, I mean the boys. Jimmy's is extremely short. Jacob rebelled, not going as short as I wished. Jacob also twisted his ankle by jumping off the train on the indoor playground while my mom was alone with them and I was in the bathroom. Mother of the year - I felt pretty awful.
Only five weeks left of school. Six weeks on my contract. But really - who's counting!
For Mother's Day, I met my mom at the mall with the boys. We had lunch and shopped for a couple of hours. My mom commented on how Jimmy was doing better in walking with her. And we got haircuts - by we, I mean the boys. Jimmy's is extremely short. Jacob rebelled, not going as short as I wished. Jacob also twisted his ankle by jumping off the train on the indoor playground while my mom was alone with them and I was in the bathroom. Mother of the year - I felt pretty awful.
Only five weeks left of school. Six weeks on my contract. But really - who's counting!
Saturday, May 05, 2007
Autistic Kids Have Difficulties Learning Words
Autistic Kids Have Difficulties Learning Words
Fri May 4, 7:02 PM ET
FRIDAY, May 4 (HealthDay News) -- Young autistic children have difficulty recognizing ordinary words, and their brains become overtaxed as a result, according to a University of Washington study.
"Rather than becoming an expert in recognizing words, their brains slow down. Because these children can't distinguish what should be a familiar word, their brains work too hard, and they are unable to focus on new words. When they can't understand a word, they miss everything else that follows in a sentence," Patricia Kuhl, co-director of the university's Institute for Learning and Brain Sciences and an expert in how infants acquire language, explained in a prepared statement.
Her team was scheduled to present the findings Friday at the International Meeting for Autism Research in Seattle.
The researchers used sensors to record the brain waves of children between 19 and 30 months of age as they listened to familiar words (dog, cat, ball, book) and unfamiliar words (bide, pint, rate, verb).
The pattern of brain activation in typically developing children showed markedly different responses to familiar and unfamiliar words. Their brain activity when hearing both types of words was centered in the temporal lobes of both hemispheres of the brain.
Autistic children showed no difference in brain response when hearing familiar and unfamiliar words, which means they were unable to differentiate between the words, the researchers said. Brain activity when hearing the words was more diffuse and not centered in the temporal lobes. This indicates that they were using more of the brain in an effort to understand the words, the team said.
The two groups of children also listened to recorded words that were played backwards. The brains of the typically developing children responded as if they were hearing something entirely different from other types of words. The autistic children's brains showed a similar pattern.
"One of the puzzles of autism is the variability of children with it," said Kuhl, a professor of speech and hearing sciences. "We believe the highest functioning autistic children have some recognition of phonemes (the basic sounds of language). And this new study shows autistic toddlers can differentiate between backward words, which are not characteristic of a language, and real words. So, some learning has gone on."
This study is part of research to understand why language disorders are a characteristic of autism.
Fri May 4, 7:02 PM ET
FRIDAY, May 4 (HealthDay News) -- Young autistic children have difficulty recognizing ordinary words, and their brains become overtaxed as a result, according to a University of Washington study.
"Rather than becoming an expert in recognizing words, their brains slow down. Because these children can't distinguish what should be a familiar word, their brains work too hard, and they are unable to focus on new words. When they can't understand a word, they miss everything else that follows in a sentence," Patricia Kuhl, co-director of the university's Institute for Learning and Brain Sciences and an expert in how infants acquire language, explained in a prepared statement.
Her team was scheduled to present the findings Friday at the International Meeting for Autism Research in Seattle.
The researchers used sensors to record the brain waves of children between 19 and 30 months of age as they listened to familiar words (dog, cat, ball, book) and unfamiliar words (bide, pint, rate, verb).
The pattern of brain activation in typically developing children showed markedly different responses to familiar and unfamiliar words. Their brain activity when hearing both types of words was centered in the temporal lobes of both hemispheres of the brain.
Autistic children showed no difference in brain response when hearing familiar and unfamiliar words, which means they were unable to differentiate between the words, the researchers said. Brain activity when hearing the words was more diffuse and not centered in the temporal lobes. This indicates that they were using more of the brain in an effort to understand the words, the team said.
The two groups of children also listened to recorded words that were played backwards. The brains of the typically developing children responded as if they were hearing something entirely different from other types of words. The autistic children's brains showed a similar pattern.
"One of the puzzles of autism is the variability of children with it," said Kuhl, a professor of speech and hearing sciences. "We believe the highest functioning autistic children have some recognition of phonemes (the basic sounds of language). And this new study shows autistic toddlers can differentiate between backward words, which are not characteristic of a language, and real words. So, some learning has gone on."
This study is part of research to understand why language disorders are a characteristic of autism.
Thursday, May 03, 2007
Previous post about Applebee's
Why did this letter have resonance with me? Recently, I was at Ihop, when Jimmy started to flip out about the bustling crowd. I left my mom and Jacob to settle the bill. The manager followed me out and accused me of ditching out of my bill. He didn't initially accept my explanation about my son and the bill being settled by my mom. The parking lot was full, there were people watching, and I felt like I was treated like a criminal. It was (and still is) humilating.
A letter making the rounds...
From a list serve that I am on...
Dear Applebee's,
I write you as a faithful patron of your chain who left the
restaurant feeling discriminated and disgraced as single mother
tonight. I look for Apple bees because the food is reasonable and
it's nice atmosphere. I am single parent and I have a child with
autism. He is four years old and limited verbal his name is Andy.
Time to time I take him to your restaurant in Fountain Valley,
California and we have had a wonderful time.
Tonight I got him out of the car to choose where to eat he ran to
Apple Bees with a smile on his face. This is his favorite place. He
does not understand when food was passing right by him and he had
nothing. When we first sat down I asked the waitress to give us
something as soon as possible. 10 minutes later we got our drinks
and crackers. . . .I was singing to Andy doing everything I could
every time food went by he let out a short yelp. I was pulling out
everything in my bag of tricks I could. Then he calm down.
The manager came to me and told me because of my child he lost
business (boy I felt guilty). I felt as though my heart was being
ripped into two. I try so hard with my son. I told him my son was
waiting for food --chips anything. I apologized and told him my son
does not speak much and has autism and I'm sorry. He came back a
second time and told he was losing more business because of my son.
I had to do something. All my son wanted was drinks something. He
came back told me we had to leave. I'm sorry I told him. This time
every one was looking at us because of the manager kept making a
huge deal and coming to our table. We were yet to get our food. My
heart was sinking and all my son wanted was food! I felt stepped
upon like yesterday's trash.
I had to pull my fifty pound four year old out of his favorite place
in tears. This posed a tremendous safety hazard and was totally
unnecessary. I feel like my heart was smashed in a million pieces.
When we were out the door the manager said "I had to do I have to do
and that I should not take my son out if he is not fit (How is he
qualified to make this comment)." As he plopped a bag of food to go
in my hand.
I take my son out to eat a lot and we have never been kicked out and
disgraced like this. We ate at this restaurant a lot. . . . .He just
a little kid---and if they would brought him food---or drinks---I
could not get him out the door after he ran in because he was at his
favorite place---
I understand why he did what he did but he did not have to be cruel
he could have done it differently ---instead me having to pull him
out in tears. I do not have much money and I try to get my son
positive experiences and take him to places he enjoys I earned a
gift certificate from my work and I took him there for a good time.
I usually can not afford Apple Bees and I take him there as a reward
he lights up so much in the restaurant.
I feel belittled and disgraced and this hurts this truly hurts. I
feel like I have been ran over by a Mac truck. How can I ever take
my sweet my little boy to his favorite place again let alone out to
eat in public again?
A former AppleBees patron
Dear Applebee's,
I write you as a faithful patron of your chain who left the
restaurant feeling discriminated and disgraced as single mother
tonight. I look for Apple bees because the food is reasonable and
it's nice atmosphere. I am single parent and I have a child with
autism. He is four years old and limited verbal his name is Andy.
Time to time I take him to your restaurant in Fountain Valley,
California and we have had a wonderful time.
Tonight I got him out of the car to choose where to eat he ran to
Apple Bees with a smile on his face. This is his favorite place. He
does not understand when food was passing right by him and he had
nothing. When we first sat down I asked the waitress to give us
something as soon as possible. 10 minutes later we got our drinks
and crackers. . . .I was singing to Andy doing everything I could
every time food went by he let out a short yelp. I was pulling out
everything in my bag of tricks I could. Then he calm down.
The manager came to me and told me because of my child he lost
business (boy I felt guilty). I felt as though my heart was being
ripped into two. I try so hard with my son. I told him my son was
waiting for food --chips anything. I apologized and told him my son
does not speak much and has autism and I'm sorry. He came back a
second time and told he was losing more business because of my son.
I had to do something. All my son wanted was drinks something. He
came back told me we had to leave. I'm sorry I told him. This time
every one was looking at us because of the manager kept making a
huge deal and coming to our table. We were yet to get our food. My
heart was sinking and all my son wanted was food! I felt stepped
upon like yesterday's trash.
I had to pull my fifty pound four year old out of his favorite place
in tears. This posed a tremendous safety hazard and was totally
unnecessary. I feel like my heart was smashed in a million pieces.
When we were out the door the manager said "I had to do I have to do
and that I should not take my son out if he is not fit (How is he
qualified to make this comment)." As he plopped a bag of food to go
in my hand.
I take my son out to eat a lot and we have never been kicked out and
disgraced like this. We ate at this restaurant a lot. . . . .He just
a little kid---and if they would brought him food---or drinks---I
could not get him out the door after he ran in because he was at his
favorite place---
I understand why he did what he did but he did not have to be cruel
he could have done it differently ---instead me having to pull him
out in tears. I do not have much money and I try to get my son
positive experiences and take him to places he enjoys I earned a
gift certificate from my work and I took him there for a good time.
I usually can not afford Apple Bees and I take him there as a reward
he lights up so much in the restaurant.
I feel belittled and disgraced and this hurts this truly hurts. I
feel like I have been ran over by a Mac truck. How can I ever take
my sweet my little boy to his favorite place again let alone out to
eat in public again?
A former AppleBees patron
Sunday, April 29, 2007
Soccer practice...
Begins tomorrow. At long last. It took forever to get enough of a team together and then the coach had to bail out. But it seems to have been resolved and we will be practicing here in Manassas Park, at Signal Hill, tomorrow night. We went for team photos and everything. Of course, to keep Jimmy in the photo, I had to be in it as well. The girls doing the photos were over the moon about our inidividual photo, but I didn't the the digital. Guess I have to wait for the hard copy.
Sunday, April 22, 2007
He was right...
From Time magazine...
"According to Kim Hyang Sik, in one of these calls, just last New Year, her nice Kim Hyang Im — Seung-Hui's mother — confessed to her aunt and other relatives that her son had been diagnosed in the U.S. with autism."
I feel ill.
"According to Kim Hyang Sik, in one of these calls, just last New Year, her nice Kim Hyang Im — Seung-Hui's mother — confessed to her aunt and other relatives that her son had been diagnosed in the U.S. with autism."
I feel ill.
Thursday, April 19, 2007
An interesting observation
My husband commented on the man who committed the horrible atrocity at Virginia Tech. He was chilled by the comments that the shooter was an individual who could not make eye contact with other, a person who wasn't capable of speaking in conversation. Asperberger's? It sounds familiar. Not that many spectrum people grow up to be mass murderers, but it does sound, according some press accounts, that he wasn't fully understood by his own family.
Monday, April 16, 2007
IEP Meeting
I am sure some of you were wondering if I survived it. The answer is yes. We got everything we wanted... consult and direct services are now written into the IEP as well as parent training. The speech language goals are much more appropriate to his disability. The occupational therapy stuff - well, the therapist is fantastic, so we are always well covered there. I finally got a chance to apologize to Jimmy's teacher about all of the drama. I didn't like the Rifton chair, but I hated the way the administration handled the situation after that initial conference. I think some good is coming of the situation, but someone got hurt in the process. I am never going to feel great about that. I think the thing that was most interesting about my IEP meeting is that the principal did not come. I did have the head of special programs, but he always attends.
I also have my pet SEAC cause for next year. I need to convince the city to hire a second speech therapist. The regulations state that they only have to employ one speech therapist for every 68 students served. We have one serving 70. Moreoever, no other district in the area is making the same demands of their therapists. The one I know outside of Manassas Park serves 50 and that keep too busy. When you have children with issues like severe articulation problems, being completely non-verbal, etc..., 20 minutes a week is ridiculous. And no one picks up the slack. Health insurers aren't required to do it (that whole habilitative versus rehabilitative thing again), they pawn it off on the schools which don't have the resources to do it correctly. It's insane. I had these great goals in Jimmy's IEP and I realized that the person who wrote them won't be there at the next meeting. As a matter of fact, I have not had the same speech therapist at Jimmy's annual meeting ever. From one year to the next, it changes.
We have parent training tomorrow night to work on the poop issues. He was playing in it again this evening. I also have to figure out what to do about getting my homework done for Wednesday. My timing is such that I can't take a personal day. Blah.
I also have my pet SEAC cause for next year. I need to convince the city to hire a second speech therapist. The regulations state that they only have to employ one speech therapist for every 68 students served. We have one serving 70. Moreoever, no other district in the area is making the same demands of their therapists. The one I know outside of Manassas Park serves 50 and that keep too busy. When you have children with issues like severe articulation problems, being completely non-verbal, etc..., 20 minutes a week is ridiculous. And no one picks up the slack. Health insurers aren't required to do it (that whole habilitative versus rehabilitative thing again), they pawn it off on the schools which don't have the resources to do it correctly. It's insane. I had these great goals in Jimmy's IEP and I realized that the person who wrote them won't be there at the next meeting. As a matter of fact, I have not had the same speech therapist at Jimmy's annual meeting ever. From one year to the next, it changes.
We have parent training tomorrow night to work on the poop issues. He was playing in it again this evening. I also have to figure out what to do about getting my homework done for Wednesday. My timing is such that I can't take a personal day. Blah.
Tuesday, April 10, 2007
A big Jimmy week
A quick post... I have SEAC tonight, in preparation for next week's school board meeting. And Thursday is the IEP meeting, the first since the Rifton chair incident. I will give a lengthy post of the proceedings Thursday evening.
Monday, April 09, 2007
My family doesn't schedule visits...
They just show up. I pull into my parking spot just before Jim pulls in his, shortly after 6pm. Jim runs in the house to go to the bathroom before we split the kids to do errands. I had just gotten back from the doctor after being diagnosed with strep and needed to go to the pharmacy. As I am sitting in the car, a man walks up to my window. It's my brother-in-law Jamie. He is up from Texas for business in Richmond for the week. No one told me a thing. Not a word. Didn't think anything about my sister's multiple phone calls to work today. Nope. We went to dinner and he played with the boys for a while before heading back. He is returning tomorrow night too. He could be hitting the bars while he is away from my sister, but no, he wants to see his nephews. He is nothing if not family oriented. I think its sweet. Of course, the timing is horrible as I have a presentation for class Wednesday night, meetings tomorrow, and a raging case of strep. But I am happy. Jimmy and Jacob are both having the best time with him.
Thursday, April 05, 2007
Going Home
Hopefully today. I hate going away. With kids, its not really a vacation, more a change of venue. This venue doesn't have enough toys, doesn't have all the safety mechanisms that we have set up - the gates, the doorknob handles. I keep finding Jimmy out on the balcony, stacking chairs and getting on top of them. I am terrified he is going to go over the side. I don't sleep as well, because I am trying to listen for him. Oh, and we only have dial up - our wireless card is dead and we aren't investing anymore in this laptop. If I get a summer school contract, I am lobbying for a iBook.
I'll post pictures when I get home. Hope you all had a great week.
I'll post pictures when I get home. Hope you all had a great week.
Tuesday, April 03, 2007
Greetings from Massanutten
We are currently on vacation. It's going okay. Getting out of the house was a joy - our washer died before we got the last of the laundry done. First order of business is to purchase a new one, as the laundromat isn't an option for even a week. The trip itself has been uneventful. Well, except for the urinal cake incident - I invited the husband to guest post, but he doesn't want to talk about it. He was fascinated and reached in while a guy was doing his business. There's a story he'll be telling for a while.
Massanutten actually has a Kids Rec program and they actually take autistic kids. We actually had a meal without them. It's pricey (more than $10 an hour each), but it was nice to have a break. My in-laws were up yesterday, so we also got out to see "Blades of Glory," which was dumb, but hysterical. There isn't a whole lot up here for small kids. The new indoor waterpark's small fry area is so small, it isn't even worth admission. They have a great playground, which we have hit everyday. I'd be more relaxed if I wasn't lamenting the washer. Oh well.
Hit you again when I get back.
Massanutten actually has a Kids Rec program and they actually take autistic kids. We actually had a meal without them. It's pricey (more than $10 an hour each), but it was nice to have a break. My in-laws were up yesterday, so we also got out to see "Blades of Glory," which was dumb, but hysterical. There isn't a whole lot up here for small kids. The new indoor waterpark's small fry area is so small, it isn't even worth admission. They have a great playground, which we have hit everyday. I'd be more relaxed if I wasn't lamenting the washer. Oh well.
Hit you again when I get back.
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