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Old 06-02-2010, 05:31 PM
 
804 posts, read 1,215,622 times
Reputation: 452

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Quote:
Originally Posted by nana053 View Post
you actually do a disservice by suggesting that everyone must try *your* methods.
Please show where I have have suggested that everyone "must" try these, or that they are "my" methods. It is merely information for those who may not know what to look for.

I merely offered that in some cases the "behavior" may have a chemical component that should not be overlooked. My trade is engineering, I make no money by passing information along. We do have a family member with AS who suffered years of illness and organ damage despite seeing more than 30 specialists of every type, because most have stubbornly disregarded any treatment that did not involve raking in thousands upon thousands of dollars for tests, surgeries, and prescriptions. Yes there was one naturopath among those, but the remainder were specialized MDs or surgeons.

If you were not seeking debate, you would have simply provided information on ABA and moved on, rather than spewing attacks of "junk science". It's no better than the other extreme, where some claim that medicine can completely cure autism. These distractions are what keep people from asking the questions we should be asking, finding accountability for the harm done to these children, and identifying and what combination of treatments are best for which children.

Quote:
Originally Posted by nana053 View Post
The problem I have is with *junk science* and much of the naturopathic stuff is junk science with little to recommend it. My background in math and statistics allows me to read the studies and separate the good ones from the bad ones, but not everyone has that advantage.
I doubt many people would care to have a mathematician or statistician diagnose or treat their medical conditions. Indeed there is a lot of misinformation out there, but traditional medicine is not immune to it, all types of medicine have been corrupted in some way or another. That is exactly why it's important for people to learn the science for themselves, to be able to discern misinformation.

Just as one example, the failed chelation horror stories tend to involve irresponsible doctors administering intravenous EDTA to children. That chemical is originally intended to treat acute lead poisoning and (more recently) cardio patients with severe arterial plaqueing, is not safe for children, and interferes with calcium turnover. There are situations where chelation is appropriate, when it is truly needed, properly administered in the correct form and at the appropriate age. It did help in our family's case. It was not math or statistics which influenced the decision, since any factor in a study can be manipulated. The choice was made after carefully studying the chemistry, consulting professionals, and most importantly, speaking to others who have gone through it.

Parents also have a right to be informed about the potential issues of cost and insurance coverage. Can you explain why ABA is so expensive?

Blue Cross to Pay $125,000 in Ground-Breaking Settlement for Autism Care -- DETROIT, June 2, 2010 /PRNewswire/ --

Parents of autistic kids battle against insurers - CNBC TV- msnbc.com

Popular autism treatment often goes uncovered | KATU.com - Breaking News, Sports, Traffic and Weather - Portland, Oregon | Health

How much should autism therapy cost? Share your opinion

"Autism 911" and the costs of therapy

Last edited by nomore07; 06-02-2010 at 07:00 PM..
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Old 06-02-2010, 07:24 PM
 
804 posts, read 1,215,622 times
Reputation: 452
Quote:
Originally Posted by jersgrl1969 View Post
My 5 year old daughter has autism. The problem is she screams-a LOT. She is verbal, not to a typical 5 year old's level, but she is able to say yes and no. She is driving everyone in the house crazy with her constant screaming. Sometimes she will scream and throw a fit for no apparent reason. Efforts to calm her down are usually futile.
Are there any medications that I may mention to her doctor to control this? We are planning on taking a trip to NJ in the fall (a 12 hour car ride) and I'm already dreading it. Benadryl doesn't have much effect on her. I read in Jenny McCarthy's book that she dealt with her son's screaming by wearing an iPod all day. I can't do that..I have 2 other small children to tend to.
Can anyone offer any advice?
I am sorry to hear of your difficulties. You have probably tried many different things to calm her down, I wouldn't doubt it. If it's this difficult to curb her screaming, there may be some issues that therapy alone may not go as quickly or easily as for other children.

Looking at facts:
  • You mentioned that she has outbursts for no apparent reason. In autism, outbursts are often triggered by something external, such as sensory overload, a specific noise, or pain. If you've eliminated those, it may be something internal (chemistry).
  • If it's difficult for her mother to calm her down, how smoothly will therapy with a stranger go?
  • You mentioned that benadryl had no effect on her. Abnormal responses to both prescription and over-the-counter drugs are not unusual in autism. Differences in brain structure and body chemistry have been proven.* Even common painkillers like dentist's lidocaine can be ineffective, or salicylates like aspirin may irritate. It varies from patient to patient.
  • GFCF doesn't always help, not all children have that sensitivity. There are plenty of others - even off-the-wall things like nightshades (plants) that affect many non-autistic people as well.
* Broad Institute of Neuroscience at Caltech

Last edited by nomore07; 06-02-2010 at 07:33 PM..
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Old 06-03-2010, 11:43 AM
 
Location: Arizona
15 posts, read 34,203 times
Reputation: 12
I have a 3year old that is autistic and screams a lot!! I try to ignore it if possible or try to redirect his attention to something else, or sitting with him in our rocking chair sometimes helps, he is a rocker. Wish I had better advice for you, I know the screaming can drive you mad!!
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Old 06-04-2010, 07:03 PM
 
804 posts, read 1,215,622 times
Reputation: 452
Default I've seen enough.

Children rarely scream for no reason at all, it means they need help. Even an average child is not going to come out with a statement like "I'm having problems with coordination", "everything sounds garbled today, my ears keep wringing", "I can't concentrate", or "I am having migraines with peripheral neuropathy". Especially when those problems are ignored and they are repeatedly told "nothing's wrong", which incorrectly teaches them to ignore physical symptoms. Since "behavior" is a concern... does that sound like responsible behavior?

Perhaps there is a reason for the screaming. Is he or she in pain or having problems with their body? It's known that certain sounds or events can trigger a fit in autism, but not all the time! Keep in mind that a child with autism cannot elaborate on physical symptoms. If it turns out the screaming is because of pain or illness that is being ignored, you're going to have far more serious problems later on. Like walking on a sprained ankle, or putting a muzzle on a wounded dog, it's not going to get better by ignoring it or treating "behavior".

WAKE UP! We're now seeing all kinds of crazy things happening to children: dropping dead after eating peanuts, going into puberty at 7-8 years old, developing diseases like cancer that were once rare in adults under 40, learning disabilities, being drugged up beyond belief.

Where's the common sense? It has been proven many times that children with autism have neurological injury and abnormalities in neurotransmitter and metabolic chemistry. I'm not referring to the hotly debated snake-oil quick fixes, I'm talking about hardcore biochemistry from doctors, researchers, pediatricians, neurologists and so on. These people are busting their backsides to help children, yet are being disregarded because of diversion tactics. Just for the record, I do believe therapy (such as ABA) can be helpful for some issues, but is not a fix-all reason to ignore underlying health problems.

All the information is out there if people can get their thumbs out and realize something has been affecting children for a long time now. I've met many parents who are outraged, demanding answers and accountability. They are the ones finding proper treatment by learning and sharing information.

Autistic children's abnormal metabolic profile findings

Childbrain.com - PDD/Autism Testing

elevated ammonia,autism and Failure to thrive - Neurology - MedHelp

More evidence that autism is a brain 'connectivity' disorder

Study Reveals Differences In How The Autistic Brain Distinguishes Oneself From Others

A Fundamental Difference in the Autistic Brain SEEDMAGAZINE.COM

State of the Science in Autism: Pathophysiology of Autism: Brain Mechanisms (http://www.nichd.nih.gov/publications/pubs/sos_autism/sub6.cfm - broken link)

If the screaming seems like an inconvenience, wait a few years. The hospital bills and so-called "behavior" issues will worsen if the child's health continues to be ignored. It's a shame these children have to suffer needlessly.

Last edited by nomore07; 06-04-2010 at 07:56 PM..
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Old 06-05-2010, 11:43 PM
 
Location: Middle America
18,315 posts, read 15,783,903 times
Reputation: 21490
Quote:
Originally Posted by nomore07 View Post
Not all metabolic disorders produce gastrointestinal symptoms. Digestion is only the beginning, foods and chemicals must also be metabolized in the liver and kidneys. When this process is impaired, the body cannot synthesize neurotransmitters properly.

Many children with autism do have medical issues. That is something an ABA therapist is not qualified or legally authorized to diagnose, and should be left to qualified doctors who are familiar with autism. Parents need to be informed so they do not automatically dismiss all symptoms as "behavior".
I work with many BCBAs and ABA therapists, and don't know a single one who would presume to attempt a medical diagnosis of any kind. They are too busy analyzing behavior, even if weren't a matter of ethics. I also work with many parents of students with autism, and don't know of any who would attempt to go to an ABA therapist or BCBA for medical advice, or who would forego medical diagnostics. ABA professionals typically SUGGEST that potential medical conditions be checked out when they notice spikes in behavior that are not otherwise explainable. ABA can help to uncover a medical problem that a person with autism is unable to communicate.

ABA isn't anymore a bandaid than chucking entire food groups and hoping for the best is. GFCF diets may have observable benefits for some people with ASDs, and for others, there may be no measurable effect whatsoever. Many children with autism have medical issues, yes, but many don't. Many children with autism have food allergies, as do many neurotypical children. Many children with autism have no food allergies or intolerances. Special diets may work wonders for some, and do nothing for others.

ABA isn't a cure, and isn't purported to be. It's a method of tracking and analyzing potential reasons for behavior (including discovery of potential medical problems and referral to medical professionals), studying and interpreting the data, and of teaching appropriate replacement behavior and coping skills to facilitate positive interaction. There's no reason to act like these two approaches, dietary attention and behavioral therapy, are at odds with one another, or aren't often used in tandem.
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Old 06-06-2010, 10:11 PM
 
10,274 posts, read 7,796,900 times
Reputation: 8369
Parents also have a right to be informed about the potential issues of cost and insurance coverage. Can you explain why ABA is so expensive?

ABA is expensive (as are Floortime, RDI and SON RISE) because anytime you have one therapist to one child, the therapy is going to be expensive. Speech Therapy, Occupational Therapy and Physical Therapy are also expensive.

ABA is more so because you are talking about 30 to 40 hours per week of intensive one on one therapy by someone who is highly educated in what works

Now, I will say that bad ABA can be worse than doing nothing. Good ABA though can do wonders.

Good medical doctors also are expensive. It is unfortunate, but everything has a price. If you know any therapists who can afford to work for free or very low cost, you are lucky.
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Old 06-06-2010, 10:19 PM
 
10,274 posts, read 7,796,900 times
Reputation: 8369
I doubt many people would care to have a mathematician or statistician diagnose or treat their medical conditions. Indeed there is a lot of misinformation out there, but traditional medicine is not immune to it, all types of medicine have been corrupted in some way or another. That is exactly why it's important for people to learn the science for themselves, to be able to discern misinformation.


I never said that I would diagnose anyone. I believe that parents need to consult doctors, but I can and do read the studies and separate out those that are bogus. Many people cannot do that and get *taken* by snake oil salesmen. It has been that way since the beginning of time for all kinds of conditions.

From 1898 through to 1910, heroin was marketed as a cough suppressant by trusted companies like Bayer -- alongside the company's other new product, Aspirin.

In 1882, Dr. Batty's Cigarettes with unknown contents claimed to provide temporary relief of everything from asthma to colds, canker sores and bad breath. "Not recommended for children under 6."

Parke, Davis manufactured and sold a cough remedy contained, among other things, codeine, chloroform and cannabis.

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Old 06-08-2010, 11:24 AM
 
1,420 posts, read 2,239,737 times
Reputation: 1922
Quote:
Originally Posted by nomore07 View Post
Children rarely scream for no reason at all, it means they need help. Even an average child is not going to come out with a statement like "I'm having problems with coordination", "everything sounds garbled today, my ears keep wringing", "I can't concentrate", or "I am having migraines with peripheral neuropathy". Especially when those problems are ignored and they are repeatedly told "nothing's wrong", which incorrectly teaches them to ignore physical symptoms. Since "behavior" is a concern... does that sound like responsible behavior?

Perhaps there is a reason for the screaming. Is he or she in pain or having problems with their body? It's known that certain sounds or events can trigger a fit in autism, but not all the time! Keep in mind that a child with autism cannot elaborate on physical symptoms. If it turns out the screaming is because of pain or illness that is being ignored, you're going to have far more serious problems later on. Like walking on a sprained ankle, or putting a muzzle on a wounded dog, it's not going to get better by ignoring it or treating "behavior".

WAKE UP! We're now seeing all kinds of crazy things happening to children: dropping dead after eating peanuts, going into puberty at 7-8 years old, developing diseases like cancer that were once rare in adults under 40, learning disabilities, being drugged up beyond belief.

Where's the common sense? It has been proven many times that children with autism have neurological injury and abnormalities in neurotransmitter and metabolic chemistry. I'm not referring to the hotly debated snake-oil quick fixes, I'm talking about hardcore biochemistry from doctors, researchers, pediatricians, neurologists and so on. These people are busting their backsides to help children, yet are being disregarded because of diversion tactics. Just for the record, I do believe therapy (such as ABA) can be helpful for some issues, but is not a fix-all reason to ignore underlying health problems.

All the information is out there if people can get their thumbs out and realize something has been affecting children for a long time now. I've met many parents who are outraged, demanding answers and accountability. They are the ones finding proper treatment by learning and sharing information.

Autistic children's abnormal metabolic profile findings

Childbrain.com - PDD/Autism Testing

elevated ammonia,autism and Failure to thrive - Neurology - MedHelp

More evidence that autism is a brain 'connectivity' disorder

Study Reveals Differences In How The Autistic Brain Distinguishes Oneself From Others

A Fundamental Difference in the Autistic Brain SEEDMAGAZINE.COM

State of the Science in Autism: Pathophysiology of Autism: Brain Mechanisms (http://www.nichd.nih.gov/publications/pubs/sos_autism/sub6.cfm - broken link)

If the screaming seems like an inconvenience, wait a few years. The hospital bills and so-called "behavior" issues will worsen if the child's health continues to be ignored. It's a shame these children have to suffer needlessly.
I have stayed out of this debate for the most part because while diet is not something that makes a noticeable effect in my son, there are children who's parents swear to a positive effect. But I have a major issue with the statement in red. An autistic child CAN communicate ailments. Maybe not to the degree you list, but many darn sure can say, my head hurts, my tummy hurts, not holding the pencil right makes me mad. This can be TAUGHT to the child. It takes time, patience and BEHAVIOR modification. I understand that there are ASD people who are nonverbal, some cannot communicate effectively and some have to use non-traditional methods. MOST of the children who are verbal can be taught to express their feelings/emotions. It does take more work on the behalf of the teacher/parent, but once communication is established (in whatever form) then the life/behavior/health/whatever of the child is greatly increased in quality.
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Old 06-08-2010, 06:26 PM
 
Location: Middle America
18,315 posts, read 15,783,903 times
Reputation: 21490
My nonverbal students can also be taught to express their feelings and emotions, and to communicate effectively, by means other than verbal communication. We have teams of therapists working with our kids to determine what adaptations will allow them the most freedom to communicate in whatever ways work best. Some kids draw pictures. Some sign. Some use adaptive devices that can be programmed with various phrases. Some use picture exchange systems. Communication is not just talking. All behavior is communication.
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Old 06-08-2010, 07:22 PM
 
Location: Sherwood
5,196 posts, read 7,613,110 times
Reputation: 4668
Not a lot of useful advice, I don't think. It sounds like there's not much she can do if the kid has a disorder that causes her to scream. I don't know if you can afford it, but I would suggest getting a helper to assist you with the children. I suspect even experts can't stop her from screaming.

It might help if you have someone who can give you some room to get some rest from the noise.

Best of luck.
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