Yale contacted us to see if Leo could participate in a couple of longitudinal studies that required children born in 1998 that had made progress. I am not sure what their criteria was for progress, but the invitation to go made me investigate this possibility of going back to ground zero. Cutting to the chase, Leo officially lost his diagnosis by Yale, the evaluators that originally diagnosed him.
But here is the back story...Yale diagnosed Leo at 24 months, and assessed him two other times (at 3 and 5). I am eternally grateful for their comprehensive testing and detailed lengthy reports. Our springboard to direction, and eventually goals and objectives that would be carried out by various therapists for years.
At our last evaluation, Leo (just turning 5) still met the diagnostic criteria for an ASD. I didn't care so much about that, but what may have been uncovered during this evaluation that would help us hone in on therapy. After all, this was our 3rd year of preschool and I wanted to perfect his program so that he could go to elementary school with as little support as possible. Yale gave us his current deficits which validated our direction and our goals. It wasn't until 6 months after that eval. our therapy team said we need to construct a "fading program". In the midst of litigation and getting our house appraised for selling (so we could afford it all), I wasn't capable of believing anything as crazy as no therapy.
But, it indeed happened a year later. Leo was no longer disabled as far as we could tell. There was nothing left to teach him. He still had struggles (see previous posting), but he was happy and learning with no support. I had to let go of those precious daily records provided by our shadows. I had to let go of knowing that Leo was taken care of.
Interestingly, I routinely got emails from parents, therapists, and teachers, asking me if I ever got an official from a doctor. I said no, that I didn't feel I needed that. I learned to trust myself and the therapy team to decide what Leo needed. It bothered me though, that the skeptics, my "fans" didn't believe that Leo was functioning at this level because I am just a mom saying so. It still blows my mind how educated smart people will only believe traditional doctors.
After a little soul searching, I let go of my desire to prove our outcome . A fight I can never win. A person has to be open and accepting that our kids CAN make dramatic progress, can even recover, when they are given what they need. A person has to look beyond their own experience and their "baggage". I entertained it for a couple weeks though, thinking I could drag Leo out of school and spend five thousand dollars on an evaluation that wouldn't serve in his interest. No thanks. I figured I'd save the money for when he really needed it.
So here I was with an invitation for a free evaluation. What's a mom to do? I weighed the pros and cons.
Pros: 1) A free evaluation that may provide us with deficits that are now apparent 4 years later. 2) It's the right thing to do. 3) Because of Leo's anonymity, I can't shout out to the world what has happened with good ABA and the diet. No hocus pocus. Just the stuff you hear about day after day. I knew telling Yale (I filled out a 10 page form just on his therapy schedules) would be a way to shout. Telling them will go a long way. After all, they are doctors.
Cons: 1) P.T.S.S. for me, exhausting for Leo. 2) I may have to prematurely tell Leo about the label of Autism. That there is a name for all the stuff he knows about himself. Our plan was to wait until he needed to know, taking cues from him. 3) I questioned whether it may be too much to ask of Leo. He may miss a Little League game, he may feel it's so much.
After having long talks with him, he said he wanted to do it. So I prepared for our action-packed two days at Yale. Leo liked the fact he'd get an ITunes gift card for his participation. He did the ADOS and the CELF while I did the ADI and the Vineland. I filled out other measurements - parent and behavior. They were fascinating. I must have filled out almost 20 different surveys on top of all the interviewing. It was exhausting. Leo did an EEG, we both did blood tests.
The first day the evaluators (totally 6 in all including our "handler") seemed aloof and wary. I thought, hmm....scientist personalities or what? I insisted on meeting with our initial evaluator, one of the people that originally diagnosed him. I immediately burst into tears after not feeling teary all day. The meeting was a little forced, Leo didn't remember her, and it was hard because I couldn't talk about Leo since he was with us.
The next day seemed a bit better. I ran into that original evaluator and she seemed more available. I was able to take her aside and share the good news about Leo's functioning level and thank her for all that she's done for us. It was a great conversation, I felt I shared what I felt I needed to say, and I felt like I had some closure. At the end of the day, I got an unanticipated "wrap-up" where the lead evaluator went over her observations. She was very warm and friendly and immediately told me Leo no longer meets the diagnostic criteria for an ASD.
I wasn't surprised by the news but it got me teary. It's not all in my mind or something. I was really shocked because she was able to give me this information when I knew the testing was for their research, not specifically for us. She also told me this is so rare to tell a parent this news. That they regularly tell parents their child still has symptoms of Autism. Their behavior all made sense to me now - they didn't BELIEVE me, they just put up with my high-maintenance requests about anonymity and not using the word Autism around Leo. There was a shift in the air - the entire team seemed very happy.
They also noted that Leo appears to have a visual spacial processing deficit. She wasn't exactly sure what it means yet, but was going to process the testing and consult with the other evaluators. This area tested within the normal range, but with approximately a 20 point deviation away from all his other numbers. This led her to believe there may be an issue. Leo may have non-verbal learning disorder. Or it may be a milder deficit. I'll find out soon when they send my a write-up, another pleasant surprise. I love facts and figures (no surprise, right). They'll have 4 assessments to compare. I won't be thrilled if there's a new disability to learn about - I am already busy working on a new degree in Homeopathy and my endless search for my children's facial tics. But I know I have no place to complain.
For now, there's nothing to do about this deficit. She thinks perhaps high school math may be a problem. I love having this information - I can prepare. If any parent can take away any learning from reading this post, look how valuable it is to have regular assessments done. Expensive, hard to find at times, but the pay-off is exponential.
Sunday, June 29, 2008
May and June Highlights
Third grade ended with nothing exciting to report. Our final Parent/Teacher conference was more of the same. He ended his marker year with anonymity intact and no learning issues. His talking out-of-turn seems to be under control, as it hadn't come up on the report card or the conference. Even in math, a topic that prompted this to happen last year. Leo had a different teacher for math, and while she said he is a "talker", it didn't appear to be an issue. Without arising suspicion, I casually asked about how Leo seemed to do with the standardized testing. She said he did great, whatever that means.
But, paranoia aside, I think Leo's 3rd grade year was a success both academically and socially. Most importantly, he's a happy person that is confident and secure in his environment. What else, really, is a mother to want? He's now viewed as one of the "older" elementary school kids. You'll find him spending most of his time surfing for 70's classic rock music on ITunes, his new favorite genre thanks to Guitar Hero. At school, they made CD trades of music and bartered sharpened pencils for cough drops, squishies, and yellow highlighters. He's saving his allowance for a pair of D.C. shoes, and prefers to only wear sports shorts with those slick exercise shirts that look like sun shirts. I can barely keep up. He gets a few calls a week, mostly from his 3rd grade BFF. They trade Bakugons and scheme about how to get more from classmates at school.
Pool Politics: I've seen a snapshot into the future so far as I've watched the "gang" of 8 to 10 year olds at the local pool. They move in a pack, back and forth from the water to the sanded volleyball court. They spend about 10 minutes "debating" during the transition about what to play next, how to divide into teams if needed. The group leader is a boy that Leo went to preschool with. Back in the day he wasn't a very nice boy. We had a bus incident early on in 1st grade with this same kid. Today, he's not one of Leo's preferred boys to play with, but will play with him if there's no one else.
I see Leo right in the middle of it all, participating, waiting. I can't hear what they are saying, but I see him and I am in awe because he looks content and natural in the group. I'll never forget what he used to look like and how he'd struggle joining a group. He used to be always one or two steps behind as his playmates had already moved on. He'd still be playing dinosaurs while the boys had moved on to transformers.
Leo doesn't seem to miss any cues, goes with the flow, often playing something he doesn't really want to because he prefers to play with the group. Funny though, he'll often break off with one or two boys and do something else if the discussion takes longer. I wonder if this is typical, a preference of how much politics you want to put up with. I asked him if he understood what was happening, thinking maybe he was missing stuff. But it appears no, he was able to fully explain the situation and said it was "boring" to wait for it all to work out. When asked if he'd share what HE wanted to do, he said yes. I can believe that because in small groups of 2, 3 or 4 boys, he'll often iniitate ideas and naturally take the lead if they let him.
At the end of last year, he'd come back by himself sometimes if things got heated - say, the 5th grade boys taking over the court, if the arguing went on and on. It seems to bother him less, and it seems like he's comfortable enough to find something to do, with our without participating in a large group. Leo will always avoid conflict if he can. He said "we were here first" for the first time. But if the 5th graders don't budge, he'll walk away and complain it's not fair. As his mom, I know it would be suicide for me to say anything. If this continues, I'll have the pool manager observe and remind the older boys not to act like bullies and share the court.
Conversations: Leo and me (and dad) have had amazing conversations recently. So interesting how time goes by and we can go another layer deep about the war in Iraq, the election, and other current events. I'd find him looking at the election coverage on CNN up until Hilary lost. He loved voting this year as always. Like many kids feel, Leo thinks war is stupid.
Still A Kid: I've appreciated watching Leo still play Webkins with his younger sister. They've made up their own very sophisticated world where they 'babysit" each other's animals, and take on these elaborate personalities for each animal. He loves to play with the dog in the kiddie pool, play in the mud with Sydney, and still plays superheroes with some of his kindergarten friends.
Theory Of Mind Tidbit: We somehow started talking about Leo's classmates, and he began talking about how his teacher calls on certain people in certain situations. He noticed that a boy that never raises his hand will get called on the rare time he does do it. He seems to know the pecking order, and who favorites are, etc. None of it seems to bother him a bit, and finds it interesting. He is certainly a real behaviorist now.
Brain Fog and Face Tics: We had our usual couple day visit from "brain fog" where Leo acts like his old self and has an off-spectrumy day. It's still very distressing when he's that out-of-it. Our homeopath is close to recommending a remedy that will address it. Leo's tics came back the last month - they are not as strong as last time, and I've found a couple of homeopathic remedies that really help. My hope is that we can nail the tics permanently - I am positive we can do it! For Sydney also - hers are worse.
Little League: This was a great experience for Leo - he played AA and really learned how to play better and consistently hit the ball. He looked forward to every game and every practice, even riding me about getting ready and being there on time. It was really fun watching him this year while chatting with the other parents. I still am amazed by him, a kid that was so fearful of the ball and had a gazillion hours of OT and PT to get over numerous SI issues.
Yale: We had a very positive but draining experience at the Yale Child Study Center. Leo participated in a Longitudinal study and a couple other studies for ASD kids. Leo officially lost his diagnosis, which I'll be posting about later.
But, paranoia aside, I think Leo's 3rd grade year was a success both academically and socially. Most importantly, he's a happy person that is confident and secure in his environment. What else, really, is a mother to want? He's now viewed as one of the "older" elementary school kids. You'll find him spending most of his time surfing for 70's classic rock music on ITunes, his new favorite genre thanks to Guitar Hero. At school, they made CD trades of music and bartered sharpened pencils for cough drops, squishies, and yellow highlighters. He's saving his allowance for a pair of D.C. shoes, and prefers to only wear sports shorts with those slick exercise shirts that look like sun shirts. I can barely keep up. He gets a few calls a week, mostly from his 3rd grade BFF. They trade Bakugons and scheme about how to get more from classmates at school.
Pool Politics: I've seen a snapshot into the future so far as I've watched the "gang" of 8 to 10 year olds at the local pool. They move in a pack, back and forth from the water to the sanded volleyball court. They spend about 10 minutes "debating" during the transition about what to play next, how to divide into teams if needed. The group leader is a boy that Leo went to preschool with. Back in the day he wasn't a very nice boy. We had a bus incident early on in 1st grade with this same kid. Today, he's not one of Leo's preferred boys to play with, but will play with him if there's no one else.
I see Leo right in the middle of it all, participating, waiting. I can't hear what they are saying, but I see him and I am in awe because he looks content and natural in the group. I'll never forget what he used to look like and how he'd struggle joining a group. He used to be always one or two steps behind as his playmates had already moved on. He'd still be playing dinosaurs while the boys had moved on to transformers.
Leo doesn't seem to miss any cues, goes with the flow, often playing something he doesn't really want to because he prefers to play with the group. Funny though, he'll often break off with one or two boys and do something else if the discussion takes longer. I wonder if this is typical, a preference of how much politics you want to put up with. I asked him if he understood what was happening, thinking maybe he was missing stuff. But it appears no, he was able to fully explain the situation and said it was "boring" to wait for it all to work out. When asked if he'd share what HE wanted to do, he said yes. I can believe that because in small groups of 2, 3 or 4 boys, he'll often iniitate ideas and naturally take the lead if they let him.
At the end of last year, he'd come back by himself sometimes if things got heated - say, the 5th grade boys taking over the court, if the arguing went on and on. It seems to bother him less, and it seems like he's comfortable enough to find something to do, with our without participating in a large group. Leo will always avoid conflict if he can. He said "we were here first" for the first time. But if the 5th graders don't budge, he'll walk away and complain it's not fair. As his mom, I know it would be suicide for me to say anything. If this continues, I'll have the pool manager observe and remind the older boys not to act like bullies and share the court.
Conversations: Leo and me (and dad) have had amazing conversations recently. So interesting how time goes by and we can go another layer deep about the war in Iraq, the election, and other current events. I'd find him looking at the election coverage on CNN up until Hilary lost. He loved voting this year as always. Like many kids feel, Leo thinks war is stupid.
Still A Kid: I've appreciated watching Leo still play Webkins with his younger sister. They've made up their own very sophisticated world where they 'babysit" each other's animals, and take on these elaborate personalities for each animal. He loves to play with the dog in the kiddie pool, play in the mud with Sydney, and still plays superheroes with some of his kindergarten friends.
Theory Of Mind Tidbit: We somehow started talking about Leo's classmates, and he began talking about how his teacher calls on certain people in certain situations. He noticed that a boy that never raises his hand will get called on the rare time he does do it. He seems to know the pecking order, and who favorites are, etc. None of it seems to bother him a bit, and finds it interesting. He is certainly a real behaviorist now.
Brain Fog and Face Tics: We had our usual couple day visit from "brain fog" where Leo acts like his old self and has an off-spectrumy day. It's still very distressing when he's that out-of-it. Our homeopath is close to recommending a remedy that will address it. Leo's tics came back the last month - they are not as strong as last time, and I've found a couple of homeopathic remedies that really help. My hope is that we can nail the tics permanently - I am positive we can do it! For Sydney also - hers are worse.
Little League: This was a great experience for Leo - he played AA and really learned how to play better and consistently hit the ball. He looked forward to every game and every practice, even riding me about getting ready and being there on time. It was really fun watching him this year while chatting with the other parents. I still am amazed by him, a kid that was so fearful of the ball and had a gazillion hours of OT and PT to get over numerous SI issues.
Yale: We had a very positive but draining experience at the Yale Child Study Center. Leo participated in a Longitudinal study and a couple other studies for ASD kids. Leo officially lost his diagnosis, which I'll be posting about later.
Advisory Panel Approves 2 New Combination Vaccines
June 26, 2008
Advisory Panel Approves 2 New Combination Vaccines
By THE ASSOCIATED PRESS
Filed at 5:55 p.m. ET
ATLANTA (AP) -- A federal advisory panel on Thursday endorsed two new combination vaccines designed to reduce the number of needle sticks that young children must endure to get the recommended immunizations.
The panel gave its nod to a four-in-one shot made by GlaxoSmithKline. It offers protection against diphtheria, tetanus, pertussis and polio and costs $45. It's given once to preschool-aged children.
Also getting approval was Sanofi Pasteur's five-in-one shot for diphtheria, tetanus, pertussis, polio and illness due to Haemophilus influenzae type b, or HiB. It costs about $69. Youngsters get four doses by age 2.
Both combinations shots were recently approved by the Food and Drug Administration. The combo shots don't change the recommended vaccine schedule, just the number of needle jabs needed.
The vaccine advisory panel OK'd the shots for the federal Vaccines for Children program, which pays for vaccinations for about 36 million children who are covered by Medicaid, are uninsured or meet other eligibility guidelines.
The panel's recommendations are also considered influential with private health insurers.
The approval brings to six the number of multi-disease combination vaccines available to children.
Dr. Gregory Wallace, chief of the U.S. Centers for Disease Control and Prevention's Vaccine Supply and Assurance Branch, said he expects more combination vaccines to become available.
The availability of both combination vaccines and individual vaccines will likely cause confusion and storage issues at many doctor's offices, panel members acknowledged.
Copyright 2008 The Associated Press
Advisory Panel Approves 2 New Combination Vaccines
By THE ASSOCIATED PRESS
Filed at 5:55 p.m. ET
ATLANTA (AP) -- A federal advisory panel on Thursday endorsed two new combination vaccines designed to reduce the number of needle sticks that young children must endure to get the recommended immunizations.
The panel gave its nod to a four-in-one shot made by GlaxoSmithKline. It offers protection against diphtheria, tetanus, pertussis and polio and costs $45. It's given once to preschool-aged children.
Also getting approval was Sanofi Pasteur's five-in-one shot for diphtheria, tetanus, pertussis, polio and illness due to Haemophilus influenzae type b, or HiB. It costs about $69. Youngsters get four doses by age 2.
Both combinations shots were recently approved by the Food and Drug Administration. The combo shots don't change the recommended vaccine schedule, just the number of needle jabs needed.
The vaccine advisory panel OK'd the shots for the federal Vaccines for Children program, which pays for vaccinations for about 36 million children who are covered by Medicaid, are uninsured or meet other eligibility guidelines.
The panel's recommendations are also considered influential with private health insurers.
The approval brings to six the number of multi-disease combination vaccines available to children.
Dr. Gregory Wallace, chief of the U.S. Centers for Disease Control and Prevention's Vaccine Supply and Assurance Branch, said he expects more combination vaccines to become available.
The availability of both combination vaccines and individual vaccines will likely cause confusion and storage issues at many doctor's offices, panel members acknowledged.
Copyright 2008 The Associated Press
This is very scary. Such bullies, how brazen, approving this after the walk on Washington and everything else. Another example how the government makes their decisions. By not being told what to do, never admitting mistakes. They'd rather trudge on down the path they know is wrong than protect our children from future damage.
Saturday, June 07, 2008
Warning About Uncooked Red Tomatoes
Hi all. I pulled this off the FDA news list. This confirms what my sister recently said, that many fruits and vegetables are discovered to have certain bacteria INSIDE the fruit or vegetable. Like lemon. Very disturbing...will investigate more on this...
The U.S. Food and Drug Administration is warning people in Texas and New Mexico not to eat uncooked red tomatoes due to possible contamination.
The FDA said an outbreak of salmonellosis appears linked with consumption of certain types of raw red tomatoes and products containing raw red tomatoes. The bacterium causing the illnesses is Salmonella serotype Saintpaul, an uncommon type of salmonella.
The federal agency said it hasn't determined the specific type and source of the contaminated tomatoes, although preliminary data suggest raw red plum, red Roma or round red tomatoes are involved.
At this time, consumers in New Mexico and Texas should limit their tomato consumption to tomatoes that have not been implicated in the outbreak, the FDA said. These include cherry tomatoes, grape tomatoes, tomatoes sold with the vine still attached and tomatoes grown at home.
Salmonella can cause serious and sometimes fatal infections.
The FDA said from April 23 though June 1 there were 57 reported cases of salmonellosis in New Mexico and Texas, including 17 hospitalizations. Approximately 30 reports of illness in Arizona, Colorado, Idaho, Illinois, Indiana, Kansas and Utah are being investigated to determine whether they are also linked with tomatoes.
Copyright 2008 by United Press International
Publication date: 04 June 2008
Source: UPI-1-20080604-09260200-bc-us-tomatoes.xml
Tuesday, June 03, 2008
Antibacterial Wipes, Hospitals, and Staph
Antibacterial wipes can spread superbugs: study
By Michael Kahn
Tue Jun 3, 1:11 PM ET
Disinfectant wipes routinely used in hospitals may actually spread drug-resistant bacteria rather than kill the dangerous infections, British researchers said on Tuesday.
While the wipes killed some bacteria, a study of two hospitals showed they did not get them all and could transfer the so-called superbugs to other surfaces, Gareth Williams, a microbiologist at Cardiff University, said.
The findings presented at the American Society of Microbiology's General Meeting in Boston focused on bacteria that included methicillin-resistant Staphylococcus aureus, or MRSA.
"What we have found is there is a high risk," Williams, who led the study, said by telephone. "We need to give guidance to the staff on how to use the wipes because we found there is a possibility of cross transfer."
MRSA infections can range from boils to more severe infections of the bloodstream, lungs and surgical sites. Most cases are associated with hospitals, nursing homes or other health care facilities.
The superbug can cause life-threatening and disfiguring infections and can often only be treated with expensive, intravenous antibiotics.
Experts have been saying for years that poor hospital practices spread dangerous bacteria, and yet many studies have shown that health care workers, including doctors and nurses, often fail to even wash their hands as directed.
The findings from a study of intensive care units at two Welsh hospitals suggest that even cleaning with antimicrobial wipes may not be enough depending on how staff use them.
The researchers found that many health care workers cleaned multiple surfaces near patients, such as bed rails, monitors and tables with a single wipe and risked sweeping the infections around rather than cleaning them up.
"We found that the most effective way to prevent the risk of MRSA spread in hospital wards is to ensure the wipe is used only once on one surface," Williams said.
Copyright © 2008 Reuters Limited. A
By Michael Kahn
Tue Jun 3, 1:11 PM ET
Disinfectant wipes routinely used in hospitals may actually spread drug-resistant bacteria rather than kill the dangerous infections, British researchers said on Tuesday.
While the wipes killed some bacteria, a study of two hospitals showed they did not get them all and could transfer the so-called superbugs to other surfaces, Gareth Williams, a microbiologist at Cardiff University, said.
The findings presented at the American Society of Microbiology's General Meeting in Boston focused on bacteria that included methicillin-resistant Staphylococcus aureus, or MRSA.
"What we have found is there is a high risk," Williams, who led the study, said by telephone. "We need to give guidance to the staff on how to use the wipes because we found there is a possibility of cross transfer."
MRSA infections can range from boils to more severe infections of the bloodstream, lungs and surgical sites. Most cases are associated with hospitals, nursing homes or other health care facilities.
The superbug can cause life-threatening and disfiguring infections and can often only be treated with expensive, intravenous antibiotics.
Experts have been saying for years that poor hospital practices spread dangerous bacteria, and yet many studies have shown that health care workers, including doctors and nurses, often fail to even wash their hands as directed.
The findings from a study of intensive care units at two Welsh hospitals suggest that even cleaning with antimicrobial wipes may not be enough depending on how staff use them.
The researchers found that many health care workers cleaned multiple surfaces near patients, such as bed rails, monitors and tables with a single wipe and risked sweeping the infections around rather than cleaning them up.
"We found that the most effective way to prevent the risk of MRSA spread in hospital wards is to ensure the wipe is used only once on one surface," Williams said.
Copyright © 2008 Reuters Limited. A
Not Autism related. Or is it? Either way it's just too darn gross and sad not to share it.
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