Thursday, June 30, 2005

Dear Noah:

Well....I started talking to you last about seeing the occupational therapist next Wednesday and then the orthotist to have special braces/orthotics made to fit in your shoes and up your ankles and of course you got all upset and started crying. You are afraid the pads or whatever in your shoes or ankles will HURT and make your ankles or feet or legs feel worse. You said you would see the occupational therapist but did NOT want to see the orthotist. I said we could at least "talk" to her and hear what she had to say MIGHT be helpful to correct your flat feet, fallen arches and stance, etc. So we will see.

HOPEFULLY by next Wednesday you will be able to handle the visit and not start crying and screaming "help me" as soon as someone comes into the clinic room!

I love you!


Wednesday, June 29, 2005

Dear Noah:

I was sitting here thinking back to when you were little. I just saw some kids walking over to our pool and it reminded me of when we used to take you to parks and places like that around other little kids. They all listened to you and would turn to us and ask "what is he saying" or "why can't he talk" etc. I know sometimes we KNEW others would "notice" and ask but I guess we hoped for the best. I never realized till today HOW OFTEN that DID happen though. We had questions from many kids about you. We always told them the same thing "he is just learning how to talk". This was when you were 3-4 years old.

No parent ever asked that I can remember. They would ask how old you were....and then conversation would lead us to telling them you had a speech delay.

But everyone pretty much accepted you regardless...especially the other kids. LITTLE kids are great like that. They pretty much accept about anyone. It is only when they get a bit older that sometimes they can be a bit mean...and NOT ALL kids are like that.

Sunday when we were looking at new model homes we saw a mother, father and their son. I would just about bet their little boy also has autism. He did many things like you have done or still do...but he was a bit more aggressive. He kept trying to run after you and touch you or grab you. I KNOW that can set you off so we just kept telling you that it was YOUR turn to set a good example of how to behave. You did well...acted like you were a bit afraid of him at times but you stood your ground. LITERALLY. You stood there and just watched him run around you or grab you and you did not move or do anything. I was so thankful as I was so afraid you would go off and scream and cry that the kid was grabbing you etc. (as that has happened MANY times in the past). did very well. Thankfully the other kid finally left....and you relaxed and started doing somersaults in the office area on our way out.

Anyway...I was just sitting here thinking about when you were little. I wonder if a parent keeps those images and thoughts fresh in their minds all the time even as their child grows into an adult? I pray I do....they are so sweet.



Tuesday, June 28, 2005

Dear Noah:

The process for getting extra funds in case we need it to provide you with any therapies you may need above what our insurance will pay for could be tough. The process is daunting.

In order to qualify you for (or TRY to) the Colorado Medicaid Waiver we have to first get a denial from SSI. I verbally got that denial over the phone last night as we may too much money for you to qualify which we knew. Now they will send the written letter to us next. The paperwork/application for the Medicaid Waiver is being sent to us as I write this. I talked to the woman at our community centered board (CCB) last night. She was extremely helpful and while you may NOT is worth a shot at applying for everything we can. This particular waiver is NOT based on our income and that means it would help pay for therapies, medical equipment, etc. if and when needed and for MORE therapy than you may qualify for under our insurance. It could get expensive out of pocket.

There are many things the CCB can help with. They have a great family support program we will be interested in. They offer many resources and it is a process but we need to get you on the list at least.

Otherwise.....I guess it all just moves on. You will only hopefully require 4-6 weeks of physical therapy, much less than we anticipated. Not sure about occupational therapy. They told us for gross motor skills you are only at a 3-4 year level. SO....we have some work cut out for us don't we son???

Not sure what we will find out yet about speech therapy. It is nice to know this new Children's Hospital satellite clinic right in our own hometown will be able to offer all the services you will need in one spot...and right beside one of our favorite parks! SO that is all great news!

You will be able to get your physical therapy, occupational therapy, speech therapy AND a social skills class. It will all take time to set everything up but we are doing pretty well so far.

Anyway....that is the progress to date.

LOVE YOU lots!


Monday, June 27, 2005

Dear Noah:

Well you did pretty well at your physical therapy evaluation. It would have taken longer than the 45 minutes they allot but they pushed us through and got most of it pretty much done.

The main thing is...since you are 6 years old we are not sure how many visits Kaiser will cover for you. However, we are also not sure how many visits you will actually require! It sounds like it may not be as many as we thought. The physical therapist is thinking that if we get some braces/orthotics for your shoes to help correct your flat feet, fallen arches and one shorter leg then you will walk correctly and not hold your legs and hip funny on the right side and your leg pain and body posture will improve and you will get stronger, etc. We also have to stretch your hamstrings every day for they are too tight.

SO.....we also will meet the orthotist next week and they are going to try to get you into occupational therapy sooner so we can combine the PT and OT if possible...and eventually we will do the speech therapy once that referral has come through. Meanwhile they are also going to be doing social skills groups/classes at the same place so it will end up being pretty nice if we can do all your therapies and classes in one spot!

Just getting everything organized is taking time. We have to go Wed. to apply for the Medicaid waiver and anything else we can so we can get those balls rolling. Longterm funding for things may have to be paid for by another source other than insurance so we need to set it up NOW.

So all in all you did well today. You cried when she measured your legs but you did well otherwise.

I love you lots!


Sunday, June 26, 2005

Dear Noah:

Well you actually did pretty well today. You walked over to the pool house to get the new keys with Daddy. You went to church and did pretty well there. We went to lunch and then out to look at about 12 new homes. Then stopped at Walgreens on the way back and now back home.

You did well....acted well the entire time...all in all had a great day. Hopefully you will do well tomorrow for physical therapy too. are now playing Roller Coaster Tycoon which you said you would need to play till MIDNIGHT since you have been gone all day.

Mommy doesn't think so sweetie pie!



The Debates Continue........

Does Mercury Cause Autism? A Debate Rages


(June 25) - Wesley Sykes is in a rage. Dinner was late. His cup held water, not soda. Strangers had stolen his mother's attention all afternoon. It is too much for the 9-year-old autistic child to bear. He begins to flap his arms and shriek, working himself into murderous screams that shatter his suburban home and all hope of a normal life.

His mother, the Rev. Lisa Sykes, has her own rage, against the demon she blames for Wesley's condition. It is thimerosal, a mercury-based preservative she received in a shot during pregnancy and he received in childhood vaccines. To the Richmond, Va., pastor, this is a just crusade. To most scientists, it's a leap of faith. The levels of mercury in vaccines - now and in the past - do not cause autism, they repeatedly have declared. But not everyone is convinced. Seven years after it began, the debate over vaccines and autism just won't die. In fact, it appears to be finding new life. Several churches have started a grass-roots movement to rid vaccines of mercury. A new book on the issue is getting attention. A Kennedy has entered the fray.
"I think this issue has persisted, despite a boatload of scientific evidence... because there are no answers for parents of children with autism," said Dr. Sharon Humiston, a University of Rochester pediatrician with a foot in both worlds. She once worked for the government's National Immunization Program, and she has a son whose autism she refuses to blame on vaccines.

Medical controversies flourish when science is lacking. In this case, both sides have limited science and each criticizes the other's. Vested interests make it tough to know who to believe. Many parents have filed lawsuits. Many scientists have ties to vaccine makers or are selling their expertise in court cases. Government officials don't want people to turn away from vaccines, which have clearly benefited public health. Both sides also have credibility problems. Opponents initially accused the measles vaccine, which never contained the preservative, of causing autism. The government defended a troubled pertussis vaccine for more than a decade before switching to a safer version. "There's conflict on all sides," said David Kirby, author of "Evidence of Harm," a book urging more research.

There are two main questions:

Did older vaccines, which contained more thimerosal than the trace amounts in modern ones, raise the risk of autism?

Are there risks today? Flu vaccine sold in multidose vials still contains the preservative, and the government urges flu shots for pregnant women and young children even though not enough thimerosal-free ones are available, critics say.

Finding answers is tough because autism, a little-understood developmental disorder, often is diagnosed at the very ages when children get vaccines. The stories are remarkably similar: A seemingly normal child gets a shot and days, weeks or months later, withdraws from the world, stops speaking, becomes upset at random stimulation such as a doorbell, and adopts compulsive behaviors like head-banging. Parents blame vaccines, but "that doesn't make it true, no matter how strongly they believe it," said Dr. Steve Goodman, a Johns Hopkins University biostatistician who served on an Institute of Medicine panel convened last year to take an independent look at the evidence, which it found unconvincing. "There doesn't continue to be scientific argument."

Beliefs and evidence are things that Sykes, pastor of Richmond's Christ United Methodist Church, understands. A soft-spoken, slender woman, she does not come off as a radical. She has a degree from Princeton Theological Seminary. The daughter of two CIA employees, she was brought up to trust the government.

"I dare them to call me hysterical," she said. "I'm the last one who should be screaming conspiracy."

Her son was a normal, active baby. A photo shows Wesley clutching an Elmo doll, his blue eyes shining and aware. But in a later photo, taken after autism had set in, Wesley stares vacantly next to his smiling brother. Through a local autism group, Sykes heard a doctor was advising cod liver oil as a treatment. She gave it to Wesley for three days, then tried an experiment on her son, who had stopped responding even to screams. "Wesley," she said. He looked up at her.
The pastor was sold. She tracked down the doctor, Mary Megson, who did a test on Wesley, which showed a level of mercury that flowed off the chart. "That was my baptism into this issue," Sykes said.

During pregnancy, she had been given a shot to prevent problems from occurring because she and her baby had a mismatched blood factor. Now, she learned that the drug contained thimerosal, which is half mercury. The additive was also in most childhood vaccines, and had been used since the 1930s to prevent bacterial contamination, especially in multidose vials.
By November 1997, Congress was getting complaints. It ordered the Food and Drug Administration to review mercury in vaccines, drugs and food. The government and a doctor group said there was no evidence of harm but that vaccine makers should move toward eliminating thimerosal to be safe. It wasn't until 1999 that vaccines with only trace amounts of thimerosal started to be introduced.

By then, parents had organized. Barbara Loe Fisher, a Virginia mom who is president of the National Vaccine Information Center, which had successfully campaigned for the safer pertussis vaccine, was disturbed federal officials didn't order thimerosal out. "I believe this is a failure to regulate industry, no question," she said. She believes a theory supported by many, that a subset of kids can't handle mercury because of a genetic or other kind of predisposition. Some scientists say it might be something else in the vaccines, such as aluminum, or a hyper-reaction to the vaccine itself. There's a 3 percent to 8 percent recurrence rate of autism in families and the disorder is four times more common in boys - more suggestion of a genetic link.

A suburban Kansas City family's experiences suggest such a link. The afternoon after Kelly Kerns' 2-month-old daughter Kaylee got several vaccines was "living hell," with the child screaming and arching her back, her mother said. "I kept telling myself everybody gets vaccinated - this is OK," she said. When Kaylee was 18 months old, her white-blonde hair began falling out and she stopped talking. Meanwhile, Kerns had twin boys - Andrew and Daniel. When they were 15 months old, they received three vaccines. A week later, they stopped talking. All three children have since been diagnosed as autistic.

In June 2000, government officials, scientists and vaccine makers held an invitation-only meeting at a Georgia retreat to review safety data the Centers for Disease Control and Prevention had from several large HMOs. The CDC's Dr. Tom Verstraeten presented results of a crude analysis suggesting mercury might be linked to some problems like language delays. As for autism, "we don't see much of a trend except for a slight, but not significant, increase for the highest exposure," he said, according to a transcript that vaccine opponents have posted on the Internet.

Pressed to quantify risks, Verstraeten demurred, saying, "it is giving more accuracy to this data than what they really have." But he admits that when he reviewed others' studies, he was "stunned" to see how plausible the argument of harm was, according to the transcript.
The Institute of Medicine in 2001 also found the theory "biologically plausible" but said evidence was inadequate to accept or reject it. Verstraeten ultimately published a medical journal article saying there was little evidence of a link. That enraged U.S. Rep. Dave Weldon, a physician and Republican from Florida, and U.S. Rep. Dan Burton, an Indiana Republican whose grandson has autism.

Fights over limits to damages that families could seek in lawsuits followed. They drew the attention of Robert F. Kennedy Jr., a lawyer and environmentalist. "I kept getting approached by these mothers of autistic kids who said the exposures from vaccines dwarfs any exposure we're getting from environmental mercury," he said. Kennedy, who has pushed the issue on news shows and in an article in Rolling Stone magazine, said that when he looked at the government's evidence it was "laughably flawed." "It was clear to me that the reports they're relying on are 'cigarette science,"' he said, referring to tobacco companies' past arguments that there was no proof cigarettes caused cancer.

Even if there were a link, proving vaccines cause autism is another matter, said Dr. William Schaffner, a Vanderbilt University professor and longtime government vaccine adviser.
There are scientific tests of causation: the problem appears soon after the exposure; the link makes sense biologically; the risk rises as the dose rises; the link is strong and consistent rather than weak or occasional; the problem doesn't occur without the exposure (a test rarely met).

The final test: the problem or risk falls if the exposure is discontinued. Studies from England, where thimerosal was eliminated sooner than in the United States, indicate that autism rates continue to rise, not decline, even without the preservative, he said.

Also, he and other scientists point to the case against silicone breast implants, involving years of court battles. Lawsuits alleged the implants caused fibromyalgia, based on isolated cases. "Now all the epidemiology is against it and that has quietly shifted away," Schaffner said. "Scientific issues are not resolved in the courtroom."

Sykes has another place in mind. "When the federal institution will not respond appropriately, take it to the church," she said. Two weeks ago, she convinced the Virginia Conference of the United Methodist church - the largest conference in United Methodism - to pass a resolution calling for the removal of mercury from vaccines and all medicines. It now heads to the Board of Global Ministries and the Board of Church and Society of the United Methodist Church for consideration. The same resolution passed Kerns' East Kansas Conference of the Methodist Church 650-0 a few weeks ago. The Virginia Synod of the Evangelical Lutheran Church of America has referred the measure to a committee. The Virlina District Church of the Brethren, which serves parts of Virginia, West Virginia and North Carolina, is drafting its own version.

Meanwhile at Sykes' home, the day that melted down with her son's screams was turning into night. Wesley has drifted off to sleep. The phone's incessant ringing stops. Sykes' husband, Seth, returns home from work. Outside, all is quiet except for the musical tinkling of a passing ice cream truck.

Later, Wesley wakes up and finishes his dinner. He cuddles with his dad in the recliner and watches TV before going to bed.
There will be more tantrums, more battles, more tears, for Wesley and his mother.
But for a rare moment, everything seems normal. There is just sweet, blessed peace.
06/25/05 12:23 EDT

Saturday, June 25, 2005

Also (about prior post on mercury link)

What about all the kids who have autism but have no excess mercury in their body? I guess if the theory that vaccines with too much mercury is causing autism, then wouldn't ALL people with autism have to have TOO MUCH mercury in their bodies? What about all the cases of autism prior to thermisol (sp?) being used in vaccines? Or to the degree it is now anyway?

If mercury overload was indeed causing autism, it would have to be the case for all instances I believe....which is why I doubt this will ever be proven to CAUSE autism...cause there are so many kids and people out there who have autism but their mercury levels in their bodies are just fine.

Dear Noah

Trying to explain strangers to you and who is and who is not safe to be around is difficult, especially when I myself am not always sure of WHO you can trust.

Today Daddy went to Kelley's wedding by himself cause you once again did not want to go anywhere. We had already planned to stay home this wedding as we figured the events might be too much for you to handle.

SINCE being home however, you decided you wanted Burger King for lunch. I told you YOU would have to go along with me if you wanted BK for lunch. You wanted to stay home and "record". You have had a one track mind lately of wanting to do nothing but record or play on your PC.

SO I decided to go in and talk to you about all these things again today. It all came down to this basically:

You told me you were afraid to go anywhere because you were afraid a stranger would come up and take you awy from mommy and daddy. You said you felt safe at home and wanted to stay home. I even suggested to you walking over or driving over to get our new pool keys today as they are passing them out today and tomorrow. We are talking right across the lot. You did not even want to do that. You said "let daddy do it tomorrow" , or "we can do it tomorrow". (now I am obssessed about NO keys remaining tomorrow which I KNOW is I would prefer doing it TODAY).

You have said to me "I'll stay here at home" (while I go get the key and lunch or whatever). I have told you time and time again you are WAY TOO little at 6 years of age to be staying home by yourself. (AND matter how tempting the notion might be to just walk and get our mail and leave you here while I also get the pool keys..I WOULD NOT do that!)

I have tried telling you if you are WITH mommy and daddy that you should be safe...that we would not let someone come along and take you away from us. That does not seem to matter to you. The idea that someone COULD is apparently too upsetting to you and not worth the risk.

I have already informed you tomorrow you WILL be going to church and Monday you WILL be going to physical therapy. You need to cut back on recording perhaps?!

Anyway.....I hope you are done crying about all least for today you are.

BUT I am not sure how to get the concept of strangers (good and bad) through to you. It is confusing to even me! SO I will have to work on this. I know it has everything to do with your autism and generalized anxiety disorder. But lately this has been a bit extreme.

SO I will pray for you my little man. I love you!!

Mommy ( I am thankful at least I make you feel safe here at home)

What Do I Think About a Possible Link???

Tough to answer. I think no one really knows what causes autism. There are many theories out there and the link between mercury in vaccines and autism is just ONE of many.

I think probably having extra mercury in any vaccine for anyone is not a great idea. SO regardless of whether or not it "causes" anything I think the extra unsafe quantities should be removed. JUST MAKES COMMON SENSE.

Were we as a society part of some sort of bizarre covered up experiment at our kid's expense? I hope not. I guess we may never know cause if it is covered up by the "authorities" I am sure they would continue to cover it up and lie about it.

Is it good to live your life like that always thinking there is a conspiracy and cover up? I doubt it. You would never be able to trust anyone.

Do you deal with the hand God gave you? I think so. It is HOW you deal with that hand that matters most.

Most autistic adults I have talked to do NOT WISH for any CURE. They like their lives just the way they are. Most don't think of themselves as having any problem...WE are the ones they feel has all the problems. ;)

I was told by our pediatrician that he did not feel mercury poisoning was causing autism. It would cause mercury poisoning which does indeed have many of the symptoms of autism, but it would be mercury poisoning. They have done some studies (that we don't seem to ever hear about) where they have found the brains in children with autism have actually developed a bit differently when they were being formed. So the actual brain looks different after BIRTH (before vaccines)....which is what they are thinking probably causes the autistic symptoms to come out later on. I think this could very well be the case. It makes sense. Certain parts of your brain don't develop correctly and others might develop too much? A defect so to speak in the development of the brain. ALL causing the symptoms you see with autism.

MANY parents just don't want less than a perfect child and the work that goes along with all you have to do with raising that child. SO they will look to try to find ANY reason for why their child is the way they are so THEY CAN FIX IT. MAKE THEM NORMAL.

I have an autistic son so I can understand about being exhausted just thinking about all the extra time and effort it takes to raise that type of child today. However, at the same time I would not trade my son for another son ever. I also do not wish to cure him from autism just to make my life easier as he seems happy with his life as it is. I doubt he knows he has any "undesirable" issues or traits, unless we TELL him or a teacher told him. I just want to provide him with the skills necessary for him to make it in OUR world successfully. I understand some autistic kids are a lot worse than others and this may not ever be possible for them. There unfortunately are many handicapped and special needs people in the world today where that is the case. BUT....I also think if we start saying your child has to meet a certain criteria to be allowed into our world...we are walking a thin line and playing a very dangerous game. WHO has the right to say who should or should not be allowed in our world if you are handicapped? (oops....not perfect....back you go!)SO I don't know.

I think too much mercury causes mercury poisoning....which has some of the same symptoms of autism. Does it cause autism? I kind of doubt it. It may not help things...but I don't know for sure that it causes it. I find the last several paragraphs of the article I posted to be the most interesting. Go back and read them. It tells about how AFTER the extra mercury was removed from the vaccines, the cases of autism actually INCREASED in certain areas rather than decreased.

So this causes a lot of debate. There is even heated debates in support groups of parents with autistic kids. Many are gung ho on CURING their kids...."CURE AUTISM", "END AUTISM", "FIGHT AUTISM", "GET RID OF AUTISM", etc.

Others just want to help their kids learn the skills necessary to live in our world. In my mind stamping out Noah's autism would be like stamping HIM out. I don't think I could ever bring myself to do that. While he may have his idiosyncrisies, I love him just the way he is!!

Autism-Parents vs. Research???

On Autism's Cause, It's Parents vs. Research
Published: June 25, 2005

Kristen Ehresmann, a Minnesota Department of Health official, had just told a State Senate hearing that vaccines with microscopic amounts of mercury were safe. Libby Rupp, a mother of a 3-year-old girl with autism, was incredulous. Dawn Villella for The New York TimesLibby Rupp of St. Paul, whose 3-year-old daughter, Isabella, has autism, says she is not convinced by studies that say there is no link between autism and childhood vaccines that include mercury.

"How did my daughter get so much mercury in her?" Ms. Rupp asked Ms. Ehresmann after her testimony.

"Fish?" Ms. Ehresmann suggested.

"She never eats it," Ms. Rupp answered.

"Do you drink tap water?" "It's all filtered."

"Well, do you breathe the air?" Ms. Ehresmann asked, with a resigned smile. Several parents looked angrily at Ms. Ehresmann, who left.Ms. Rupp remained, shaking with anger. That anyone could defend mercury in vaccines, she said, "makes my blood boil."Public health officials like Ms. Ehresmann, who herself has a son with autism, have been trying for years to convince parents like Ms. Rupp that there is no link between thimerosal - a mercury-containing preservative once used routinely in vaccines - and autism. They have failed. The Centers for Disease Control and Prevention, the Food and Drug Administration, the Institute of Medicine, the World Health Organization and the American Academy of Pediatrics have all largely dismissed the notion that thimerosal causes or contributes to autism. Five major studies have found no link.Yet despite all evidence to the contrary, the number of parents who blame thimerosal for their children's autism has only increased. And in recent months, these parents have used their numbers, their passion and their organizing skills to become a potent national force.

The issue has become one of the most fractious and divisive in pediatric medicine."This is like nothing I've ever seen before," Dr. Melinda Wharton, deputy director of the National Immunization Program, told a gathering of immunization officials in Washington in March. "It's an era where it appears that science isn't enough."Parents have filed more than 4,800 lawsuits - 200 from February to April alone - pushed for state and federal legislation banning thimerosal and taken out full-page advertisements in major newspapers. They have also gained the support of politicians, including Senator Joseph I. Lieberman, Democrat of Connecticut, and Representatives Dan Burton, Republican of Indiana, and Dave Weldon, Republican of Florida. And Robert F. Kennedy Jr. wrote an article in the June 16 issue of Rolling Stone magazine arguing that most studies of the issue are flawed and that public health officials are conspiring with drug makers to cover up the damage caused by thimerosal. "We're not looking like a fringe group anymore," said Becky Lourey, a Minnesota state senator and a sponsor of a proposed thimerosal ban. Such a ban passed the New York State Legislature this week. But scientists and public health officials say they are alarmed by the surge of attention to an idea without scientific merit. The anti-thimerosal campaign, they say, is causing some parents to stay away from vaccines, placing their children at risk for illnesses like measles and polio. "It's really terrifying, the scientific illiteracy that supports these suspicions," said Dr. Marie McCormick, chairwoman of an Institute of Medicine panel that examined the controversy in February 2004.

Experts say they are also concerned about a raft of unproven, costly and potentially harmful treatments - including strict diets, supplements and a detoxifying technique called chelation - that are being sold for tens of thousands of dollars to desperate parents of autistic children as a cure for "mercury poisoning." In one case, a doctor forced children to sit in a 160-degree sauna, swallow 60 to 70 supplements a day and have so much blood drawn that one child passed out. Hundreds of doctors list their names on a Web site endorsing chelation to treat autism, even though experts say that no evidence supports its use with that disorder. The treatment carries risks of liver and kidney damage, skin rashes and nutritional deficiencies, they say. In recent months, the fight over thimerosal has become even more bitter. In response to a barrage of threatening letters and phone calls, the centers for disease control has increased security and instructed employees on safety issues, including how to respond if pies are thrown in their faces. One vaccine expert at the centers wrote in an internal e-mail message that she felt safer working at a malaria field station in Kenya than she did at the agency's offices in Atlanta.

The six published studies by Dr. Geier and David Geier on the relationship between autism and thimerosal are largely based on complaints sent to the disease control centers by people who suspect that their children were harmed by vaccines.In the first study, the Geiers compared the number of complaints associated with a thimerosal-containing vaccine, given from 1992 to 2000, with the complaints that resulted from a thimerosal-free version given from 1997 to 2000. The more thimerosal a child received, they concluded, the more likely an autism complaint was filed. Four other studies used similar methods and came to similar conclusions.Dr. Geier said in an interview that the link between thimerosal and autism was clear.Public health officials, he said, are " just trying to cover it up."Assessing the StudiesScientists say that the Geiers' studies are tainted by faulty methodology."The problem with the Geiers' research is that they start with the answers and work backwards," said Dr. Steven Black, director of the Kaiser Permanente Vaccine Study Center in Oakland, Calif. "They are doing voodoo science."Dr. Julie L. Gerberding, the director of the disease control centers, said the agency was not withholding information about any potentially damaging effects of thimerosal."There's certainly not a conspiracy here," she said. "And we would never consider not acknowledging information or evidence that would have a bearing on children's health."

In 2003, spurred by parents' demands, the C.D.C. asked the Institute of Medicine, an arm of the National Academy of Sciences and the nation's most prestigious medical advisory group, to review the evidence on thimerosal and autism.In a report last year, a panel convened by the institute dismissed the Geiers' work as having such serious flaws that their studies were "uninterpretable." Some of the Geiers' mathematical formulas, the committee found, "provided no information," and the Geiers used basic scientific terms like "attributable risk" incorrectly.In contrast, the committee found five studies that examined hundreds of thousands of health records of children in the United States, Britain, Denmark and Sweden to be persuasive.

A study by the World Health Organization, for example, examined the health records of 109,863 children born in Britain from 1988 to 1997 and found that children who had received the most thimerosal in vaccines had the lowest incidence of developmental problems like autism.Another study examined the records of 467,450 Danish children born from 1990 to 1996. It found that after 1992, when the country's only thimerosal-containing vaccine was replaced by one free of the preservative, autism rates rose rather than fell.In one of the most comprehensive studies, a 2003 report by C.D.C. scientists examined the medical records of more than 125,000 children born in the United States from 1991 to 1999. It found no difference in autism rates among children exposed to various amounts of thimerosal.

Parent groups, led by SafeMinds, replied that documents obtained from the disease control centers showed that early versions of the study had found a link between thimerosal and autism.But C.D.C. researchers said that it was not unusual for studies to evolve as more data and controls were added. The early versions of the study, they said, failed to control for factors like low birth weight, which increases the risk of developmental delays. The Institute of Medicine said that it saw "nothing inherently troubling" with the C.D.C.'s adjustments and concluded that thimerosal did not cause autism. Further studies, the institute said, would not be "useful."Since the report's release, scientists and health officials have been bombarded with hostile e-mail messages and phone calls. Dr. McCormick, the chairwoman of the institute's panel, said she had received threatening mail claiming that she was part of a conspiracy. Harvard University has increased security at her office, she said. An e-mail message to the C.D.C. on Nov. 28 stated, "Forgiveness is between them and God. It is my job to arrange a meeting," according to records obtained by The New York Times after the filing of an open records request.Another e-mail message, sent to the C.D.C. on Aug. 20, said, "I'd like to know how you people sleep straight in bed at night knowing all the lies you tell & the lives you know full well you destroy with the poisons you push & protect with your lies." Lynn Redwood of SafeMinds said that such e-mail messages did not represent her organization or other advocacy groups.

In response to the threats, C.D.C. officials have contacted the Federal Bureau of Investigation and heightened security at the disease control centers. Some officials said that the threats had led them to look for other jobs.In "Evidence of Harm," a book published earlier this year that is sympathetic to the notion that thimerosal causes autism, the author, David Kirby, wrote that the thimerosal theory would stand or fall within the next year or two. Because autism is usually diagnosed sometime between a child's third and fourth birthdays and thimerosal was largely removed from childhood vaccines in 2001, the incidence of autism should fall this year, he said.

No such decline followed thimerosal's removal from vaccines during the 1990's in Denmark, Sweden or Canada, researchers say.But the debate over autism and vaccines is not likely to end soon. "It doesn't seem to matter what the studies and the data show," said Ms. Ehresmann, the Minnesota immunization official. "And that's really scary for us because if science doesn't count, how do we make decisions? How do we communicate with parents?"

Thursday, June 23, 2005

Dear Noah:

You are keeping track of the DAYS of SUMMER as you call them. Today would be day #3 you said. You also called today "Family Day" as you think we should all be in there playing on your computer with you!

You are happily singing in your room and playing your replacement Roller Coaster Deluxe PC game that came yesterday and recording yourself and the sounds.

I think the digital recorder was a great investment but I had no idea YOU would be the one using it and EVERY DAY! I hope and pray it won't wear out!

You even know how to change the batteries now and to recharge the batteries.

You are learning a lot from recording....and it seems to be helping you talk better.

I guess if it wears out I can get another one. I was only planning on using it for special occasions and vacations. But this is probably better for you.



Wednesday, June 22, 2005

Noah on slide at park-something he is not wanting to do right now! Posted by Hello

Dear Noah:

Well Mommy is tired today. I bet you get tired of hearing that. You are playing I-Spy on your I may get beside you and take a quick nap. The last time I did that however you recorded me SNORING on your bed as I apparently drifted off into a deep enough sleep that I began snoring!

You were so quiet and got several clips..hahaha. Actually very cute and funny!

Let's see what happens today. You love my digital camera/recorder. Lately that is all you want to do...record EVERYTHING. Yesterday you even filmed INSIDE the laundry hamper!



Tuesday, June 21, 2005

Dear Noah:

You are all excited about it being the FIRST DAY OF SUMMER. You wanted to go swimming cause it is the first day of summer. But this morning is not the warmest yet and personally I am not in the mood to go by the pool to sit in the hot weather later. Not with my migraine! put on some SUMMER clothes. You asked me to make you a SUMMER LUNCH. I am sure the theme for the day will be FIRST DAY OF SUMMER!

I asked you if daddy made you sad or mad. You said sometimes. I asked what daddy did to make you said. You said "he told me I was not recording something but I was".

I asked you if mommy made you sad. You said" are a good person".

I asked you if daddy was a good person and you said" NO....cause he tells me I am not recording".

Interesting for all to read I believe as this should show you that an autistic child looks at things a lot differently than another child might.

(Noah loves his daddy....don't get him or me wrong. He loves being around him and even though he sets him off many times he still enjoys being around him. I hope that lasts but over time if Keith is not careful Noah may get to the point where he won't want to be around him as he will realize he overloads his system too much for him to handle. Age will hopefully help Noah and he will learn how to handle a lot of things he just cannot handle now). I guess time will tell.

Regardless Noah mommy loves you. I am thankful you think I am a good person and I am sure it is because I UNDERSTAND you. Daddy is a good person too...he just has a harder time understanding you...though I think he is trying.

You are now sitting quietly and happily recording stuffed animals on the kitchen table and your toys from Burger King. They are dancing. Daddy ran to Target by himself. The stress in the house is immediately gone. BUT it creates more stress for me as I realize the main source and now what am I supposed to do with that information?


this is an audio post - click to play

Welcome to My hell~!

OH brother. First day of summer and Noah daddy set you off again. Funny he had just come to me and told me he had figured out HOW to talk to you to NOT set you off. I heard him in there telling you all these places we needed to go and or things we needed to do today. Just that alone can overwhelm you and upset you.

However he took things a step further and was telling you you were NOT recording something with my digital recorder as you only had the camera by the speaker at your computer. You tried to tell him you were recording the sounds from Roller Coaster Tycoon but never got that he kept telling you you were NOT recording. Not being acknowledged really upsets you. You stomped on the floor and had a fit. Daddy of course does not know to just LEAVE the room....and let it go. He yelled at you then for stomping...which is not allowed here as someone lives below us. AND then instead of leaving it rest when it sounds like you are calming down some....he again says "ALL I WAS TRYING TO SAY WAS...." and goes through the entire speal again! You screamed twice to the top of your lungs.

I go in and then take over and told Daddy to leave the room. I was telling you also to NOT stomp or scream or act like that but to use your CALM DOWN book to calm down and reminded you of HOW you should act if you got upset. You looked at me and was crying and said "Daddy was saying I was NOT recording but I was recording I am recording the sounds on the speaker". I told you that was FINE and to not worry about what daddy said. It was my camera and I understood the fact that you were recording, etc. You came over and hugged me and kept hugging me. SEE....someone GOT YOU! UNDERSTOOD YOU.....and you were relieved.

I am so tired of the crap your daddy can put you through because he seems to forget that you are autistic and just cannot be dealt with in the same manner that another child might be able to be handled. TIME AND TIME AGAIN this happens.

ABOVE will be the sound clip of what happened as Noah was recording at the time and caught it all. THIS my friends cannot be a great way to live for regular people let alone a child with autism and other issues.

Can someone please explain that to my husband>>>?????

Sunday, June 19, 2005

Dear Noah

Today was Father's Day and you woke up a little earlier than you should have for going to bed SO LATE! did pretty well. You did NOT want to go to church but I finally got you to go. Once there you actually did pretty well. We were proud of you for being able to sit well and remain pretty calm.

After church we had to run to the store. Picked up a few groceries and came back home. You have done well since.

So all in all you have had a great day today!



Saturday, June 18, 2005

Dear Noah:

I know you being able to handle certain things can be difficult. Today you came up to me and said (after I had told you to "COME HERE!!" a few times).

You said to me:

"Mommy don't say come here again." "You have said "come here" to me about 100 times!"

It was all I could do to NOT laugh. I said: "Well I say come here about 100 times to you every day because you don't listen to me!"

Then I sat there and thought to myself for awhile....geesh..I DO say COME HERE to you about 100 times every day. It all has to do with you not listening or having a hard time listening. You are always walking away from me as I talk to you so I end up saying "COME HERE!" hahaha. Oh well. I have listened to myself on the recorder a few times and I have to say I don't really like the way I sound all the time in a stern voice it seems. Well not all the time but TOO OFTEN.

Now you just came up to me pressing your nose into my shoulder sniffing like crazy. I asked you what you were doing. You said "SMELLING". I asked why. You said "cause I like smelling". You are REALLY wound up today. LITERALLY bouncing off the furniture and floors and beds. It can be extremely difficult on days like this with you. It is very hard to get you to focus on any one thing. You should sleep well tonight!

Daddy is in the room with you to hopefully give me a little bit of a break. BUT a break never really truly happens....and that is okay. I really don't mind.

HOT today. Supposed to get even hotter. I have our nice water fountain on outside on the balcony even though we are NOT outside to enjoy it right now. It is TOO HOT! hahah.

Saw a swimming pool for sale at Big Lots that you can blow up if you have a backyard to put it in. Under 15.00! BIG HUGE rectangular one. SUPER nice. Course we don't have a backyard yet so no pool for you. It would be nice and they are so cheap these days.

You also told Daddy today to "go to sleep", "you are tired" when you tried to get him to NOT tell you NO about something. SO funny!

Well you are running around like crazy. I need to get off here.



Friday, June 17, 2005

Dear Noah:

Well we did manage to take you to the library today. Again you did NOT want to go anywhere....but I told you in order to keep recording you would HAVE to go. That taking a break and getting out of the house was actually good to do every once in awhile. SO I made you take a break. You went. Got to the library and you decided to get OUT of the car and play at the park. Then you actually went INTO the library and even decided to go out to eat. However, we had to run and pick up some folders for daddy and by the end of that trip you had overloaded and you we ran out of time. SO it was a quick run through the drive though at KFC and back home for lunch.

ALL in all while you were overloaded and freakin out did pretty well.

Let's see what tomorrow brings.

I love you my little man!


Dear Noah:

Been trying to get my other blog updated so much lately that I have not been here at this blog much. Sorry about that. My other blog is and it has many things on it and lots of information and helpful links. I am devoting an entire page to autism and links to resources. Same for home schooling. SO if anyone is interested go check it out as it could be helpful. I will be posting the same links here eventually....once I can make time to post them all again. I am also not sure if I can do like an entire page of links on specific things without it being a post may be the only way to do it. Mod blog allows you to create an entire page of anything you want on the I can post ALL the links in one side page there. would be "eat out" day Noah. I am not sure you will GO OUT to eat as you have already talked about eating IN.

I still love you so much matter!


Thursday, June 16, 2005

this is an audio post - click to play

Dear Noah:

Well we are kind of captive in our own home lately as you still don't really want to go anywhere. I am not used to this as before you wanted to go go go!!

We love being at home but there are times we will continue to try to get you out.

I have a cute clip of you singing in the tub to post next!



Wednesday, June 15, 2005

Dear Noah:

I decided to see if you would be willing to take a small trip in the car today. I asked if you wanted to ride with me and Daddy up to the post office to drop off a package for grandpa Lincoln. You actually said "YES!"

So we went. You took the recorder with you ...(I don't think I ever planned for my digital recorder to be used this much).

Anyway...we actually went INSIDE even to mail out the package. You clung to use like glue but you went and went in willingly. We then drove you through BK for some lunch and then back home.

You did pretty well. Originally you told me this morning you were STAYING HOME and not going anywhere. BUT you did end up making this short journey today which was good.

Back home now and you are calming down a bit finally I think.

Daddy and I have noticed right now you also don't want ANYONE staring or looking at you. That really bothers you right now and you go around here all the time saying "don't look at me" or "go away". Hopefully this will improve over time.

Otherwise, we will be going to bed EARLIER tonight than you have been.



Tuesday, June 14, 2005

Our World Keeps Turning!

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Dear Noah:

Well I am sitting here and it is about 2:00 p.m. You are busy recording video clips...something you LOVE to do lately. You are still in the mood to NOT do anything or go anywhere outside the house. So unlike your normal self.

So we have been making do with that I guess. I wonder how long it will last. I posted some messages online in a support group about this and they all say they have experienced it with their autistic kids too from time to time. That you have just realized that certain social situations and things in your environment overload your sensory system (which we knew). That you have to learn how to protect yourself, adapt to the situations and recover.

Now the question is: How in the world do you do that?

That is what autism is all about. If you could tune out things in your environment that distract you from coping and just being in our world you would not be considered autistic.

I will be anxiously awaiting any feedback from the group on this.

Mommy loves you regardless!

Monday, June 13, 2005

Dear Noah:

Well I did finally manage to get you out of the house today long enough to make a run to Big Lots. You did NOT want to go though. I have bribed you with saying you can record if you do things and you cannot record if you don't. Since you love recording things right now with my camera, you usually comply whether you want to or not.

However, you were NOT yourself whatsoever at the store. You were super quiet in the car on the way there. We did take some books on CD for you to listen to which you enjoyed.

Got to the store and you wanted to stay in the car. Finally got you out of the car and into the store. You got on the end of the shopping cart like always but that is where the "old you" disappeared. There was no semblence of your former self.

From there on you hung on the end of the cart, bent over with your head pushed down inside the empty shopping cart as far as it could go. You did not look up at anyone and did not want to walk around...did not want to look at the toys or see or be around people. I think you were literally tuning the entire world out around you..or you were giving it your best effort.

At the check out you found some display patio furniture to sit on. We looked over at you. You seemed as if someone had drugged you. You were a sitting ZOMBIE. TOTALLY tuning or trying to tune everything out around you. You could not wait till one of us was done checking out to take you back out to the car. I cannot recall a time you sat so still and quiet before since you were born.

You showed no real signs of life until we got back home and you immediately went up our steps to the door and was playing with the door. You sounded like your old self there again. AND have been so in the house too.

I had the digital recorder with me and was going to film you at the store. BUT my batteries were low so I could not. However, you were not yourself at all.

Meanwhile I did get a call finally about starting your physical therapy at least. We will try for every other Monday from 9:15 till 10:00 a.m. Should prove interesting and hopefully you will be able to go and enjoy it enough to keep going. Or else we will have to get someone to come into our home and provide your therapies.

All more reminders we need to get you some income and on lists and waivers and things NOW so you can prepare more for your future needs. It could be you will always need someone around you to push and prod you to make sure you get things done in your life. Maybe you won't be able to work. I don't know. Time will tell. But just in case you cannot we need to think about the different options for those possibilities too. MOST start now. More paperwork, all time consuming. It is a wonder time is not a vacuum since so many things consume it. Wait....maybe it is?? haha.

Anyway...we still love you. Just lately it has become hard to see YOU in there.


Update on people/kids downstairs

Well I held off on allowing Noah to get involved with the kids downstairs. I mean we don't know the couple and their kids are only 3 and 1 year olds. However, that would not normally even be a problem for Noah as when he wants to he can play with smaller kids.

To make a long story short, yesterday we had the windows open and I kept smelling something. At first it smelled like incense. I wondered about that and wondered if someone was doing something to try to DISGUISE the smell of something else as in a lot of cases (though not all) incense can be used for that purpose. Now don't get me wrong. I like incense though it is a bit too smokey for me!

Anyway...later on I kept smelling a smell and it got stronger and stronger. I walked out to our balcony door and man.....the smell was overpowering! Someone downstairs was smoking POT. YEAH...POT.

We are so familiar with the smell as we had problems with that kind of crap when we lived at the apartment complex. Now while I know we cannot control everyone in the world or even our own little world or those immediately living around us, we do live in a so-called "controlled community" which means even obnoxious smells of ANY kind let alone against the law kinds, are forbidden.

Not sure what if anything can be done about this. I have already sent an email to the HOA to notify them to contact the owner about his problem. These people are the same ones who had not been here 2 weeks and the landlord/owner had to come out to try to collect rent as they were behind over 2 weeks in paying their first full month's rent there. Maybe they won't be here long which is what I was suspecting from day one, which was another reason I did not want to allow Noah to get too attached to playmates as if they up and left he would be devastated.

SO this just goes to show you....once again...I guess you never really know about others in the world. You don't always know who your kids's friends are and what their families are like do you? Unless the person is a relative (and even then you don't always know I guess).....anyone your kid sees could pose a dangerous situation. I think most times you can pretty much tell about people. But we hear horror stories all the time at the hospital about kids getting their heads blown off because they went to someone else's house to play and there was a gun they found and played with and it went off. OR the parents are doped up and/or drinking and/or BOTH and are oblivious to what is really going on in their home. Or the kids find drugs and OD on them or kill themselves inadvertently because they have no idea what they are messing with.

SO I am thankful we did not allow Noah to go downstairs to play with those kids. I mean I don't want him around that kind of lifestyle or be exposed to it if I can help it. That was one reason we moved from the apartment. I don't want him to be around someone who is not watching him and cannot guarantee they can keep him safe as they cannot apparently even keep themselves safe as their own senses are dulled because of POT or alcohol.

So that is the update on that situation. I choose to go to a neutral place such as a park to allow Noah to meet and play with friends. I have no desire to now or ever allow him to go to someone else's house as long as he cannot make good judgements on his own. If he never has that ability he will always have to have someone with him to help him make good decisions. I hope and pray he will be very smart in this area as time goes on and instinctively KNOW things about other people and situations he may be in. However, many autistics struggle with that their entire lives.

So this was an FYI.

Dear Noah:

Well after a couple week break I have more school work planned out for you to do here at home this week. You were so excited about restarting it you did about 6 worksheets of things last night.

You really seem to LOVE fractions and can understand that concept. Course you are a visual learner and that is how you are being taught about fractions. Word problems will be a bit more challenging for you I think. You are a great reader but the COMPREHENSION is what is problematic for you although you have greatly improved.

Anyway, you have had a trying couple of weeks. You have not wanted to go anywhere for fear "you would have too many strangers around you". So we have been pretty much homebound for a couple of weeks....only venturing out long enough to make a quick run somewhere...or just Mommy or Daddy going somewhere and the other staying home with you. SO unlike you...but very common in the autistic world!

OKay.........I don't think anyone saved this video clip...but I found out yesterday you had taken my digital camera into the bathroom and RECORDED yourself peeing and then the toilet water flushing and swirling down. You thought it was hilarious while I was watching the clip and HORROR came over my face when I saw the ANGLE to which you were recording the toilet water being flushed as I realized MY CAMERA could have fallen down into the water!

I have told you in the past the bathroom was OFF LIMITS for recording ANYTHING. I told you that before but I guess you snuck in there and did it anyway.

You are something. Some of the things you come up with to FILM and record are unique. Like rolling the camera over and over in your hands you say to "make it look like you are riding on a roller coaster". You try really amazing get on the floor and record toys rolling by the camera. You record ceiling fans and fans up close to see the blades moving around. You put the camera in your big TONKA dump truck yesterday and pushed it across the floor and it filmed (FROM a driver's view point (if he was small enough to fit into the TONKA truck). So you think of things like that ....which I have never thought of and it makes some of your clips quite interesting!

You also made a comment yesterday....I can't remember now what about..but it was using some words we did not know you knew. Nothing bad...but BIG words. Daddy asked me if I had told you those words...I said no.

Your speech is getting a lot better. You speak more slowly for words you have had a hard time with in the past which makes it easier for us to understand you.

Well..I am behind on my work AS USUAL and need to get to it for a bit.



Sunday, June 12, 2005

Noah you would love to build a ride like this one!! ;) Posted by Hello

Noah you look scared to death here but you LOVED this slide!! Posted by Hello
this is an audio post - click to play
this is an audio post - click to play

Dear Noah:

Last night you were hilarious. You got in bed and then said "I think I am a little tummy is really growling". I said it was a little too late to be eating now as you were in BED and you could wait and eat the next day and have a big breakfast!

You said (crying I might add) "I am starving and if I wait till tomorrow my stomach will be so empty I will get sick!" (hahahahah).

Not exactly sure where you got that from but we got you up and fixed you some CLUB CRACKERS and water. Once you had those you acted like you did not need them. You ate maybe 4 and drank some water and got back in bed.

I am sitting here now wondering if you are going to want to go to church today or not. I am already sensing you are not going to want to. You never even got dressed yesterday!

On that note we did have FAMILY TIME many times yesterday which you loved. We got the real backgammon set out and taught you how to play that. DO any other 6 year olds know how to play backgammon I wonder? I doubt it is a common game for your age group. Anyway you did so well you beat the pants off of me and your daddy many times over! You call it "the backgammon game without buttons" as the other one you had been playing was the handheld electronic one.

So are such a joy as usual!

Still cloudy and a bit cooler today. I love cooler weather and so do you so it does not upset me. I think everyone else is wondering if we will even have a summer this year! Suits me just fine so far! ;)

Got some caramel rolls in the oven and Hazelnut coffee ready. Course you won't eat the rolls ....I think you said you will have bananas today (of course only Stage 3 baby food bananas as you still cannot tolerate the texture of real bananas). I think some butter bread too you said. One thing for sure you are pretty easy to feed I guess even though you are extremely picky about the textures and smells and tastes! IF we owned a Burger King you would be in heaven cause right now that is your favorite place for chicken nuggets! You won't even eat the chicken nuggets from the store anymore.

I have a crockpot meal planned for today but again you won't eat that so I guess we will be making you something else or picking something up on the way home from church (if you go).

Later Gator!

Mommy loves you!

Saturday, June 11, 2005

More on stimming:

I found the below information to post here to offer more insight into stimming. Please see my final thoughts below:

Stereotypic (Self-Stimulatory) Behavior[Stimming]

Written by Stephen M. Edelson, Ph.D.Center for the Study of Autism, Salem, Oregon
[The yellow(changed to orange here) highlighting of words is mine. --KF]

Stereotypy or self-stimulatory behavior refers to repetitive body movements or repetitive movement of objects. This behavior is common in many individuals with developmental disabilities; however, it appears to be more common in autism. In fact, if a person with another developmental disability exhibits a form of self-stimulatory behavior, often the person is also labelled as having autistic characteristics.

Stereotypy can involve any one or all senses. We have listed the five major senses and some examples of stereotypy.

Sense Stereotypic Behaviors

Visual: staring at lights, repetitive blinking, moving fingers in front of the eyes, hand-flapping
Auditory:tapping ears, snapping fingers, making vocal sounds
Tactile: Rubbing the skin with one's hands or with another object, scratching
Vestibular: Rocking front to back, rocking side-to-side
Taste: Placing body parts or objects in one's mouth, licking objects
Smell: Smelling objects, sniffing people

Researchers have suggested various reasons for why a person may engage in stereotypic behaviors. One set of theories suggests that these behaviors provide the person with sensory stimulation (i.e., the person's sense is hyposensitive). Due to some dysfunctional system in the brain or periphery, the body craves stimulation; and thus, the person engages in these behaviors to excite or arouse the nervous system. One specific theory states that these behaviors release beta-endorphins in the body (endogeneous opiate-like substances) and provides the person with some form of internal pleasure.
Another set of theories states that these behaviors are exhibited to calm a person (i.e., the person's sense is hypersensitive). That is, the environment is too stimulating and the person is in a state of sensory-overload.

As a result, the individual engages in these behaviors to block-out the over-stimulating environment; and his/her attention becomes focused inwardly.

Researchers have also shown that stereotypic behaviors interfere with attention and learning. Interestingly, these behaviors are often effective positive reinforcers if a person is allowed to engage in these behaviors after completing a task.

There are numerous ways to reduce or eliminate stereotypic behaviors, such as exercise as well as providing an individual with alternative, more socially-appropriate, forms of stimulation (e.g., chewing on a rubber tube rather than biting one's arm). Drugs are also used to reduce these behaviors; however, it is not clear whether the drugs actually reduce the behaviors directly (e.g., providing internal arousal) or indirectly (e.g., slowing down one's overall motor movement).

Copyright © 1995

(Okay..this I felt would provide more information to those who don't know anything about this type of behavior in autistic children and adults- NOW while I agree with using exercise as a means to help minimize stimming as it will work to a degree, I am not supportive of using drugs. AND exercise or drugs are not a "cure all" for stimming. Autistic people NEED to do these things in order to remain SANE in our world. STOPPING them from doing these things they need to do just to survive in fact would make it so they could not survive comfortably in our world. I don't see any point to that).

AND it has been proven time and time again, that even though for example Noah is stimming and does not appear to be listening or grasping a concept in school or here at home as he appears to NOT be paying attention to you or what you are saying, when tested on this later we find out he indeed DOES grasp and has heard what we have said. Even in preschool they questioned this and found out he indeed did catch things they were saying for example in CIRCLE TIME, even if he would not SIT in the circle but had to walk AROUND the circle the entire time.
this is an audio post - click to play
this is an audio post - click to play

AND more............(I am long winded)

AND...haha. Yes...AND....Noah indeed is very true autistically when he makes these sounds.

This is very difficult for anyone to "GET" if they are not around an autistic person all the time or are not autistic themselves. SO hard to understand this. Noah indeed makes sounds walking to the car in the mornings. He made sounds walking up the sidewalk to the school doors "every" day when he went to public school. He made them coming out the school doors when we picked him up all the way to the car. He makes sounds walking up to the library doors or to Target or the grocery store. He also kind of jerks around and MOVES a lot instead of just plain walking. He actually needs to do these things so we let him. When I ask him how he feels he says "I am excited". He always seems to feel excited, which I think is a true description I am sure of how he feels!

I don't try to suppress him as he would not be able to handle going out then at all most likely. I do try to set limits on WHEN or WHERE he can make these sounds and he complies to the best of his abilities. I want him to know it is OKAY for him to be HIM and make these sounds and noises in his room but that most public places he goes to will be considered quiet places and that he will not be allowed to make those sounds there.

MANY people stare and watch and listen and look at Noah on his journeys down the sidewalk to wherever we are going. I ignore them. I am sure they wonder if something is wrong with him. I know some people actually carry cards and say "My child is autistic. What is your excuse?" but I think that might be going a bit too far? hahahah.

I just think silently to myself "yes..there is something different about Noah but right now he is not hurting anyone and he is still outside in the open air and is free to be HIM until we hit that public door and go inside a public place. Then he too will have to learn and try to abide by the rules. However, if he wants to dance down the sidewalk back to the car singing or making his sounds I will always let him. THAT is WHO he is. It is the very essence of his being and to make him stop that would be like trying to extinguish his own individuality. His own life force. I just can't and won't do it.


ALSO...sound making is something pretty common in most autistics. So Noah's sounds also have a lot to do with that. AND I imagine it is tied into his sensory integration issues as well.

I AM thankful he can control them to a point and at least usually hold off on doing them in his room. We let him make as many sounds as he wants on the way walking into a public place like the library, church or a store. He can jerk around and make sounds and do what he wants but as soon as we hit the doors we say "okay, now it is quiet time" and he actually stops making sounds and can usually maintain being quiet the entire time we are in the store or library, etc. Once out however the process starts again and he is like FREE......he will make his sounds and jerk around instead of plain walking to the car. He is HIMSELF and very happy.

Just So Everyone Also Knows...

Just so everyone understands:

Noah makes these sounds too at times (well most times I guess) for no apparent reason. I don't want to mislead everyone and make you all think he only makes these sounds after driving somewhere or for "a reason". Noah makes a variety of sounds and does on a daily basis. Over and over and time and time again. MOST times for NO apparent reason and nothing has happened to cause him to make a sound. He just seems to need to do it. So we let him. It seems to calm him down. I can totally GET it when he does the more mild humming type sound that sounds similar to what people do when they meditate. However, when he does these more intense sounds it is hard for us to understand how that can actually be calming to him though it is.

So anyway, I understood some of the sounds he made after our trip and WHEN we drive anywhere even now. However, the clips below were MONTHS after the trip to Ohio and driving anywhere. He was just sitting in his room playing on his computer and making those sounds.

Okay.....hope that clears it up! ;)

Noah's Sound Clips Below

So anyway..the sounds clips below are of Noah making some of the sounds he makes. Now when we first got back from our trip to Ohio from Christmas a couple of years ago he was making these sounds almost continuously. I mean he went on and on and on, over and over and over. He would sit in his room playing on his computer and still be making these sounds. He would try coming out to the living room and make these sounds but I could not take hearing them 24/7 so I told him he could make the sounds but had to to do it in his own room (as it got to me after awhile!). So he did. He would stay in his room and make these sounds so long that he would get a hoarse voice!

I know when we traveled back from Ohio he started making these sounds....especially when driving in the VUE over the highway and over bridges. I now know he was duplicating the same sounds and hums the tires make over the road as we drove over them! Took me forever to get that one. Anyway...I figured it would STOP once we got home from our trip but it did not. He brought the same sounds into the house and made them everywhere. He did this for about 4 -6 months straight.

OVER TIME however, he finally started to have less episodes where he would make these intense sounds, but instead make more laid back more meditative "humming or moaning" type sounds. Now when we still drive places, especially when we are driving my VUE, he will still make all the sounds effects that go along with driving over roads, passing road signs, passing cement bridge walls, etc. AND if you listen real carefully, the sounds he makes do parallel the real sounds the truck's tires and body are making as they drive over the road or it passes brick wall dividers, etc.

When I first let my boss at work hear these clips during a time when I was about to my breaking point from listening to these sounds over and over she kind of looked wild-eyed and said it was creepy and reminded her of the excorcist. She kept asking "is that really Noah?" BUT it is not really creepy once you understand why he makes the sounds. But it can be like Chinese water torture if you are in the same room with someone who does this for HOURS ON END! hahahaha.

Anyway....I had posted a previous clip of Noah stimming and making sounds more like his usual hum he makes now but I had never posted any of these older clips of his more intense sounds.

Now Noah pretty much sticks to the lesser humming-type sounds rather than the prior intense sounds. There are times he will make the other sounds when he is playing or even just sitting in his room but it is not the daily, hour by hour, minute by minute intense episodes he had for about 4-6 months straight.

SO there you have it!

this is an audio post - click to play

Friday, June 10, 2005

Dear Noah:

So I finally pulled you over this morning to talk to you and ask you some questions, which of course you hate! Especially questions about WHY or HOW you feel about something. I have noticed this past week that you don't want to do anything or go anywhere. You have not even wanted to get out of your PJs on most days let alone brush your hair or teeth. I have wondered why. I have also noticed that for the past week or so you seem to not be so willing to give me a kiss on the lips. When I ask for a kiss you come over and then never give ME an actual kiss but instead turn your head and push it into my face or head. You wait for me to kiss YOU. I ask for a kiss on the lips and it is like pulling teeth to get you to do this. You used to give those kisses all the time. You still occasionally will especially for Daddy. But for some reason lately you seem to be backing off on that.

I have heard about regression in autistic kids. I always thought that was more for the speech/language aspect but also know it can be other things such as being around people, etc.

I pulled you over and asked you today WHY you did not want to go anywhere this week. Yous still don't understand the concept of why. SO I tried asking you "how does it make you FEEL to go to the store or the library". You understood this and started to cry. You said you did not want to go anywhere because too many strangers were all around you. Well, that made sense to me. I know at the park this week you had an episode with that other kid riding his bike past you that freaked you out. You also hurt your leg again. We usually go to the library now on Fridays (TODAY) as it is not crowded. However, you did not even want to go there this morning. You did not want to go to the store or Target. NO where. You said you wanted Burger King for lunch but Daddy could bring it HOME to you. I told you that driving through the drive through there are no other people or strangers around as you are in the car with Mommy and Daddy only. You said you could do THAT but that was the ONLY place you would go.

I DID coax you into getting dressed and getting your teeth brushed and hair brushed. I had to threaten you with NOT being able to record today all day if you did not get dressed or brush your teeth, etc. That worked even though you had a fit in the process. You did end up getting dressed and doing your basic hygiene stuff. However, if I would have pressed the issue and told you you had to go somewhere in order to record I think you would NOT have done that. You literally cry today and have every day anytime we even suggest you go somewhere.

So now what to do... if anything. I am not sure. I know this is all part of the way you are. I can live with that but...I also wonder about your future if you want to stay holed up in the condo all the time. Maybe it is just fleeting and this too will pass and something else will take its place. That has happened many times over.

I wonder if you might be depressed? I know the doctor also diagnosed you with generalized anxiety disorder. She said you were anxious about everything all the time. How exhausting that must be. But I see you many times during the day and you are not anxious about anything. You seem very content and calm here at home. Maybe that explains WHY you want to stay home all the time. To remain calm and safe and content? HUM.......that is a lot to think about. Also makes me rethink going ahead and applying for the Colorado state Medicaid Waiver and SSI for you now. I guess it is possible as you get older you will need additional support. I am anxious. Daddy went to run all the errands this morning so I could stay home with you. You are off in your room recording yourself playing Roller Coaster Tycoon. Most times you prefer eating in your room too by your computer. SO breakfast and lunch and supper it is not uncommon to find you sitting there at your PC and eating your meal alone. This seems to make you happy and content. SOMETIMES I get you to come out or MAKE you come out and eat with us. You used to do it all the time at lunch at least. Lately I have allowed you to just go ahead and eat lunch in your room too. I guess I should still keep you coming out here with us for at least that one meal every day.

Now I have a lot to think about.

I love you!