Re: progress

[Guest guest]

we did ABA at home and our behavioral psychologist who coordinated the program was krista kennedy of behavioral building blocks. She 's been great to work with. hope center hadn't opened when we began our program and we didn't know about the eic... the route we took was labor intensive, but hey--it was a labor of love.

most of my daughters trainers (myself included) started working with her "from scratch". don't sweat finding someone to do the training who has experience(its nice when you can find someone, but not critical). i can't describe what an empowering experience it was to actually sit down and work constructively with my child doing this program ... other family members, teens and college students will make good trainers too

hope this answers your querries. let me know if i need to fill more (keeping it brief b/c i'm typing one handed ...)

lauren

[Guest guest]

What great news regarding Alyssa's reevaluation. My son with PDD-NOS will be 4 in October. I can only hope to turn things around in the next year!

progress

I just wanted to share some interesting news re: my 5y.o. daughter alyssa. some of you may recall that she was diagnosed w/PDD-NOS 1 1/2 yrs ago. during the past year, we modified our diet, eliminatig wheat,gluten,dairy,casein,egg and soy (alyssa and younger sister gabi are both allergic) and doing an intense regimen of ABA therapy in addition to preschool, communication station, speech therapy and a dance class.... well, we just finished alyssa's reevaluation with dr. anan at beaumont and she has concluded that alyssa no longer meets the diagnostic criteria for any autism spectrum (or other) disorder. she still has areas of deficits which we will continue to address in her ABA program, though, so we aren't changing our plans for her yet. and... gabi is doing great on a "clean" diet and sophie has plumped up to 11 lbs. now i just want to lose 20 lbs.... lauren Support Everyday Miracles by shopping online at IGIVE.COM, where a portion of every purchase is donated to this support network. Proceeds received will be used for a variety of functions, such as educational activities, therapy, famiy outings, etc. http://www.igive.com/EDM

[Guest guest]

re: "the diet": my daughter didn't have any overt digestive problems either. and the only allergy we were originally aware of was egg(hive reaction). however, once i learned of the diet, it made sense to me to run a fill allergy eval up the flagpole, especially b/c my husband had allergies as a kid. for allyssa, we found that after we got her "clean", she calmed down a bit and was able to focus better (rather helpful when she was in rx). when she had an accident/ate a hamburger bun a few weeks into the program, we saw a jump in stim and other behavioral problems. that convinced us the diet was a good idea.

for those of you who are concerned that their child won't eat when you change their diet, especially if they are picky, self-limiting anyway consider this (and remember that my kid was that way too): One of the hallmarks of the disorder is our childrens profound inability to adapt to the world around them and learn from it. They can learn to do this. Its our job to teach them... its a lot harder to teach our kids than the nt kids these skills, so it takes a lot more effort. So, yes, when you introduce change (like new foods) you will see an increase in problem behaviors (like mega-tantrums) and your child will refuse to eat a few meals. if you hold your line and follow your dietary plan, your child will get hungry enough, and will begin to eat the new stuff. and then, your child will learn to like the new stuff, and to try & like even more new stuff. and you will feel like a great miracle has happened! Hey, my kids eat sushi (of all things!), all kinds of meat dishes, and are even developing a taste for a variety of green stuff. It can, and if you choose, will, happen.

ABA is applied behavioral analysis. it is a type of behavior modification that has developed over the last decade that has been empirically (scientifically/research supported) proven to help our kids learn to relate to the world and people around them. The earlier and more intensively you do it, the better the result will be for your child. there are a few specialists in our area I'll be to tell you about if you're interested in following up on this.

lauren

[Guest guest]

That's wonderful news!! Thank you for sharing your story with us. It is stories like this that help provide the glimmer of hope many are searching for.

-----Original Message-----From: Lsnirsch@... Sent: Thursday, August 28, 2003 8:54 PMTo: EverydayMiraclesAutism Subject: progressI just wanted to share some interesting news re: my 5y.o. daughter alyssa. some of you may recall that she was diagnosed w/PDD-NOS 1 1/2 yrs ago. during the past year, we modified our diet, eliminatig wheat,gluten,dairy,casein,egg and soy (alyssa and younger sister gabi are both allergic) and doing an intense regimen of ABA therapy in addition to preschool, communication station, speech therapy and a dance class.... well, we just finished alyssa's reevaluation with dr. anan at beaumont and she has concluded that alyssa no longer meets the diagnostic criteria for any autism spectrum (or other) disorder. she still has areas of deficits which we will continue to address in her ABA program, though, so we aren't changing our plans for her yet. and... gabi is doing great on a "clean" diet and sophie has plumped up to 11 lbs. now i just want to lose 20 lbs.... lauren Support Everyday Miracles by shopping online at IGIVE.COM, where a portion of every purchase is donated to this support network. Proceeds received will be used for a variety of functions, such as educational activities, therapy, famiy outings, etc. http://www.igive.com/EDM

[Guest guest]

a reply from the "original poster":

I made an assumption that the group would know that dr. anan is a psychologist with beaumont's center for human development, and that her conclusions would be based on objective psychological testing. In alyssa's case, she was seen for testing on two different days, and the tests were performed by two different psychologists.

by no means do i believe that we are out of the woods with our child. like i said originally, she still has deficits and her current deficits are being adressed by her ABA program. We are NOT kicking back and coasting down easy street. Nor would I recommend that anyone do so. Even when great progress is made, we must always remain vigilant (like any good parent would be, regardless of their child's condition) and monitor our children's progress--until they at least reach the legal age of majority.

lauren

[Guest guest]

I had a similar experience at 's four-year-check. The doctor we have seen for two years knew how was before we started treatment. We did occupational therapy outside of school and in school, speech and physical therapy in school, and used schedules, social stories, and for a while brushing. We never changed 's diet, never did ABA, but I think from what I learned at school we were doing something similar to it. I just did what seemed to need. If he responded, we continued. If he didn't, we stopped.

The difference in in these two years is remarkable. He was delayed in gross motor skills, had major sensory issues, and meltdowns were so bad we did not go out in public at all. A visit to a doctor or family member's house was a dreaded nightmare. Now he is totally fine most of the time. And I say *most* of the time...not *all* of the time.

's doctor told me that no longer has autism. This bothers me greatly. The reason is because autism is not something that can be cured. Just because he did not show any difficulties during the appointment does not mean he does not still have autism. He also has asthma. Just becuase he was not having trouble breathing, does that mean he no longer has asthma? You cannot base it one one visit with the doctor, or one day or week that is good. can go a long time without a meltdown, but when he has one it is just as bad as it used to be. Taking his carpet out of his room to put in a hardwood floor resulted in a week of sleepless nights.

Just yesterday we took him for an eye exam and he flipped out so badly he made himself throw up. He has never done that. I am not saying that alone is autism. It was a usual meltdown, but worse in a way. I know the difference between a temper tantrum, a child who is afraid, and a child who is having a meltdown from autism.

Now, I told my doctor that what he said bothers me. When he asked why, I told him that still needs schooling and therapy, or he will regress. My doctor then told me that autism is a sentence worse than death, and because can look at me and can talk he does not have autism. At this point I was so furious I walked out. I am going to be contacting the office manager to set up autism training for the doctors in that office. Another friend of mine had a problem with one of their doctors not recognizing a meltdown from autism and reacting the opposite way of what she should have done.

I have already spoken with Sally Burton-Hoyle from the Autism Society of Michigan and she agreed to go and teach them. It needs to be done.

I have diabetes. My blood sugars have been normal for quite some time because I watch what I eat and test when I feel I need to. Does that mean I am cured? I also have high blood pressure. I quit smoking, take medication, and have not had an episode of high blood pressure in a long time. Does that mean I am cured?

My son did not show any "autistic symptoms" in the doctor's office. By the way, what kind of doctor thinks that if your child looks at you or can talk, he does not have autism? Because my son did not show the sypmtoms today does not mean he doesn't ever show them. Actually on the way home that day he had a meltdown in the car because I had to take a circular ramp to get on the freeway and it messes up his sensory system. The rest of the day was shot. But my son is "cured" according to this particular pediatrician.

Something that scares me about this is that if the doctor says the treatment is no longer needed, what happens to the child? What we did with was so different from what the original poster did with their child. I cannot say that her child will regress. I don't know. I certainly hope not. But the doctors who say autism can be cured are just plain wrong.

I am not trying to offend anyone here. I most certainly hope I did not. This is still a raw sensitive issue with me and I hope that nothing I said can be taken the wrong way.

[Guest guest]

I think the issue of "can autism be cured" is pretty debatable.

I'm not sure. I think all cases are different.

I am pretty sure that your pediatrician is ignorant however, and is in no place to make judgments about your son. He obviously does not know the first thing about autism and should never be attempting to diagnose. When a child such as Alyssa was told that she no longer meets criteria for autism, it is just that...This doesn't mean that those professionals believe in a "cure" either, but they do believe that she is no longer meeting the criteria for the disorder. And knowing what kind of evaluation Alyssa has been through, it was not just based on a one time observation by a pediatrician. Just like a diagnosis should not be given quickly, it should not be removed quickly either.

How about the term "autism in remission"? I would be happy with that diagnosis for my son.

You mentioned that just because your son was not showing symptoms that day, does not mean he no longer has autism, just like if he wasn't asthmatic, doesn't mean he doesn't have asthma....I agree with that...but if the symptoms of a disorder are virtually gone over a substantial period of time, and the child no longer meets any criteria, then why can't they be considered "recovered" or "cured" or "in remission"? or at the very least "no longer meeting criteria'?

I think each child should still be treated according to what he /she needs in terms of services; if a child still needs a special diet, or behavioral training, or speech, for example, they should still get it, regardless of the diagnosis. I wish we could get away from labeling altogether, and just treat what needs to be treated....

I think it's great that Sally Burton Hoyle is willing to do some training for your doctor's practice; I'm curious- are they willing to receive it??

Re: progress

I had a similar experience at 's four-year-check. The doctor we have seen for two years knew how was before we started treatment. We did occupational therapy outside of school and in school, speech and physical therapy in school, and used schedules, social stories, and for a while brushing. We never changed 's diet, never did ABA, but I think from what I learned at school we were doing something similar to it. I just did what seemed to need. If he responded, we continued. If he didn't, we stopped.

The difference in in these two years is remarkable. He was delayed in gross motor skills, had major sensory issues, and meltdowns were so bad we did not go out in public at all. A visit to a doctor or family member's house was a dreaded nightmare. Now he is totally fine most of the time. And I say *most* of the time...not *all* of the time.

's doctor told me that no longer has autism. This bothers me greatly. The reason is because autism is not something that can be cured. Just because he did not show any difficulties during the appointment does not mean he does not still have autism. He also has asthma. Just becuase he was not having trouble breathing, does that mean he no longer has asthma? You cannot base it one one visit with the doctor, or one day or week that is good. can go a long time without a meltdown, but when he has one it is just as bad as it used to be. Taking his carpet out of his room to put in a hardwood floor resulted in a week of sleepless nights.

Just yesterday we took him for an eye exam and he flipped out so badly he made himself throw up. He has never done that. I am not saying that alone is autism. It was a usual meltdown, but worse in a way. I know the difference between a temper tantrum, a child who is afraid, and a child who is having a meltdown from autism.

Now, I told my doctor that what he said bothers me. When he asked why, I told him that still needs schooling and therapy, or he will regress. My doctor then told me that autism is a sentence worse than death, and because can look at me and can talk he does not have autism. At this point I was so furious I walked out. I am going to be contacting the office manager to set up autism training for the doctors in that office. Another friend of mine had a problem with one of their doctors not recognizing a meltdown from autism and reacting the opposite way of what she should have done.

I have already spoken with Sally Burton-Hoyle from the Autism Society of Michigan and she agreed to go and teach them. It needs to be done.

I have diabetes. My blood sugars have been normal for quite some time because I watch what I eat and test when I feel I need to. Does that mean I am cured? I also have high blood pressure. I quit smoking, take medication, and have not had an episode of high blood pressure in a long time. Does that mean I am cured?

My son did not show any "autistic symptoms" in the doctor's office. By the way, what kind of doctor thinks that if your child looks at you or can talk, he does not have autism? Because my son did not show the sypmtoms today does not mean he doesn't ever show them. Actually on the way home that day he had a meltdown in the car because I had to take a circular ramp to get on the freeway and it messes up his sensory system. The rest of the day was shot. But my son is "cured" according to this particular pediatrician.

Something that scares me about this is that if the doctor says the treatment is no longer needed, what happens to the child? What we did with was so different from what the original poster did with their child. I cannot say that her child will regress. I don't know. I certainly hope not. But the doctors who say autism can be cured are just plain wrong.

I am not trying to offend anyone here. I most certainly hope I did not. This is still a raw sensitive issue with me and I hope that nothing I said can be taken the wrong way.

Support Everyday Miracles by shopping online at IGIVE.COM, where a portion of every purchase is donated to this support network. Proceeds received will be used for a variety of functions, such as educational activities, therapy, famiy outings, etc. http://www.igive.com/EDM

[Guest guest]

....but if the symptoms of a disorder are virtually gone over a substantial period of time, and the child no longer meets any criteria, then why can't they be considered "recovered" or "cured" or "in remission"? or at the very least "no longer meeting criteria'?

No matter what, I will always have diabetes. It can be controlled with things I do, just as 's meltdowns can sometimes be prevented with proper preparation. I hate the labels also, but unfortunately that is how it works right now. Only if you have the label can you get what you need, and sometimes not even then.

Regarding labels...I told my pediatrician I don't care if is considered to have autism or not. He will be just the same either way. The behaviors and the personality of my child will remain regardless. I don't think he understood that. I have come to a place in my heart where I would not change one thing about my son's personality. The only thing I would change if I could is his anxiety level. No one wants their child to feel that way. I am no different. So many positive things have come of my life because of my son. Label or not, he is still exactly the same child.

As for the doctors accepting the training, if the office manager is willing to set it up and all the doctors have the opportunity, I feel that I have done all I can. I do not feel obligated to take my child to such a narrow-minded doctor, and I won't. But I do have an obligation to give them the info they need to make a proper diagnosis.

I will have to let you know what the office manager's response is when I hear from her.

[Guest guest]

Autism is a life-long, pervasive, neuro-biological, immune system disorder. The DSM diagnoses it symptomatically, i.e. at the interface with other human beings, not the underlying systemic problem.

The damage is done, and nothing short of a miracle can reverse it. What can be done is treat chemically (non-toxic diet, melatonin to help restore vital hormone balances, due to pineal gland dysfunction), psychologically (psychotherapy to help overcome the frustration and anger at being misunderstood or maltreated), and behaviourally (to help adapt to the human environment).

ABA is controversial, so I won't go into it here. Some swear by it, but the success rate is less than half, and only when started young.

A footnote: a sensory diet may be needed to help overcome some sensory dysfunction, which is almost always present in a person with neurological damage.

Colin.

Re: progress

I had a similar experience at 's four-year-check. The doctor we have seen for two years knew how was before we started treatment. We did occupational therapy outside of school and in school, speech and physical therapy in school, and used schedules, social stories, and for a while brushing. We never changed 's diet, never did ABA, but I think from what I learned at school we were doing something similar to it. I just did what seemed to need. If he responded, we continued. If he didn't, we stopped.

The difference in in these two years is remarkable. He was delayed in gross motor skills, had major sensory issues, and meltdowns were so bad we did not go out in public at all. A visit to a doctor or family member's house was a dreaded nightmare. Now he is totally fine most of the time. And I say *most* of the time...not *all* of the time.

's doctor told me that no longer has autism. This bothers me greatly. The reason is because autism is not something that can be cured. Just because he did not show any difficulties during the appointment does not mean he does not still have autism. He also has asthma. Just becuase he was not having trouble breathing, does that mean he no longer has asthma? You cannot base it one one visit with the doctor, or one day or week that is good. can go a long time without a meltdown, but when he has one it is just as bad as it used to be. Taking his carpet out of his room to put in a hardwood floor resulted in a week of sleepless nights.

Just yesterday we took him for an eye exam and he flipped out so badly he made himself throw up. He has never done that. I am not saying that alone is autism. It was a usual meltdown, but worse in a way. I know the difference between a temper tantrum, a child who is afraid, and a child who is having a meltdown from autism.

Now, I told my doctor that what he said bothers me. When he asked why, I told him that still needs schooling and therapy, or he will regress. My doctor then told me that autism is a sentence worse than death, and because can look at me and can talk he does not have autism. At this point I was so furious I walked out. I am going to be contacting the office manager to set up autism training for the doctors in that office. Another friend of mine had a problem with one of their doctors not recognizing a meltdown from autism and reacting the opposite way of what she should have done.

I have already spoken with Sally Burton-Hoyle from the Autism Society of Michigan and she agreed to go and teach them. It needs to be done.

I have diabetes. My blood sugars have been normal for quite some time because I watch what I eat and test when I feel I need to. Does that mean I am cured? I also have high blood pressure. I quit smoking, take medication, and have not had an episode of high blood pressure in a long time. Does that mean I am cured?

My son did not show any "autistic symptoms" in the doctor's office. By the way, what kind of doctor thinks that if your child looks at you or can talk, he does not have autism? Because my son did not show the sypmtoms today does not mean he doesn't ever show them. Actually on the way home that day he had a meltdown in the car because I had to take a circular ramp to get on the freeway and it messes up his sensory system. The rest of the day was shot. But my son is "cured" according to this particular pediatrician.

Something that scares me about this is that if the doctor says the treatment is no longer needed, what happens to the child? What we did with was so different from what the original poster did with their child. I cannot say that her child will regress. I don't know. I certainly hope not. But the doctors who say autism can be cured are just plain wrong.

I am not trying to offend anyone here. I most certainly hope I did not. This is still a raw sensitive issue with me and I hope that nothing I said can be taken the wrong way.

Support Everyday Miracles by shopping online at IGIVE.COM, where a portion of every purchase is donated to this support network. Proceeds received will be used for a variety of functions, such as educational activities, therapy, famiy outings, etc. http://www.igive.com/EDM

[Guest guest]

A combination of mercury, DPT, MMR (maybe some other vaccinations too, but

" combinations " of live vaccines are the worst), fluoride, fertilizers,

antibiotics, assorted metals that cross the placenta, and many other

environmental pollutants supply the trigger to individuals already

genetically predisposed.

Some of those factors may also cause the genetic predisposition in much the

same way that radioactive uranium in fertilizer used on tobacco plants may

cause genetic damage predisposing to cancer.

Colin.

(My POV)

Re: progress

>

> Colin, I'm curious: what do you believe caused the " damage " ?

>

> I, too, am a huge believer that autism is neuro-biological and related to

> immune system disorder. I also believe that individuals with autism

usually

> benefit greatly from sensory 'diets' as well 'non-toxic' diets.

> I believe that many types of autism are probably lifelong and pervasive,

and

> many are not.

> Many children, if 'damaged' by external forces and not only as the result

of

> genetics, can be helped...if proper and early intervention is given for

that

> child's symptoms.

> I do not believe " that nothing short of a miracle can reverse it " .

Certainly,

> miracles would be helpful (and cheaper!) but I have met and talked to many

> people whose children and teenagers no longer meet any criteria (DSM-IV-R,

> medical, social, behavioral) for autism. Many skeptics will say that these

> cases probably weren't ever autism to begin with, but I believe in my

heart,

> that these cases are stories of recovery.

> If autism is truly a neuro-biological issue with medical interventions

> available, than why can't there be a cure? Look at all the other medical

> illnesses that have " cures " associated with them....and if not cures, then

at

> least periods of remission where they are considered symptom-free!?

>

> I know we've had a rather heated on-line debate recently about accepting

> autism, and that this is just a part of who our children are, etc etc.,

and I

> don't intend to stir up any more heat with this topic. Everyone is

entitled to

> their own opinions, and everyone's opinions on-line will be respected.

> Everyone lives a different life and walks a different path, and we can't

judge

> anyone else's views about autism, about treatments for it, or about the

> possibility of living without it.

>

> But just imagine if medical research put in 1/10th of the money they put

in

> for curing cancer into finding a cure for autism...what then?

>

>

> *****************************Expect a

miracle!*******************************

> > Autism is a life-long, pervasive, neuro-biological, immune system

disorder.

> ......

> > The damage is done, and nothing short of a miracle can reverse it.

>

>

> Support Everyday Miracles by shopping online at IGIVE.COM, where a portion

of every purchase is donated to this support network. Proceeds received will

be used for a variety of functions, such as educational activities, therapy,

famiy outings, etc. http://www.igive.com/EDM

>

>

[Guest guest]

Just so you all know, I replied privately to apologizing for the misunderstanding of my reply to her post. If anyone else was offended by it, please write to me offlist, and I will explain further if necessary. I did not make some of it clear enough, I guess.