How many of you have a child with classic or severe autism?

Cherish - posted on 07/05/2012 ( 73 moms have responded )

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Ok,
I am going to sound like a TOTAL jerk,I SWEAR I do not mean to...
But I am reading these posts and it seems like most people have kids with Aspergers,PDD or HF "autism"
It is seriously depressing me.
My older 2 have "ASD" my youngest has classic/"severe" autism and it is SO DIFFERENT.

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Jenna - posted on 12/17/2013

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Gotta say I have 2 autistic kids. My daughter is Aspie my son moderate-severe autism. Both are challenging in different ways. My daughter was more of a challenge because she COULD speak but couldn't speak up about what was upsetting or annoying her. I get that classic autism is harder in some ways, but Aspergers ain't a walk in the park either

AmberLee - posted on 10/06/2012

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Trust me my oldest son has Aspergers that does not fit any mold. He is now 15 and really smart but has such a hard time time socially and can't seem to deal with much of anything. He gets so aggressive and losses control. I worry about his future daily. He is not at all a text book example. I would love to find a group for him and I to connect with. Know of any in Ontario.

Janet - posted on 09/24/2012

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Okay... I'm going to try not to come off as a total jerk... and its not that we don't care... because we really do.. but...



Donna, you may have noticed that no one replied to your repeated posts about cordblood etc.. and its because that's not what the original post was about - although you give lots of great information (almost too much to keep a busy ASD-mom's available attention, but informative all the same) - it really doesn't have much to do with the original poster's question, or people's replies. It certainly is valid information, and an interesting area to look into in regard to those affected on the Autism Spectrum, but its not why we opened the post. We're not here to point fingers or get all angry - we're here for support from each other. I'd recommend, if you'd like to have some appropriate discussion on the issues that you present, that you open another thread dealing with that specific topic and invite others to comment.



Good luck :)

Janet - posted on 07/23/2012

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I know, I'm late weighing in on this post, but I just saw it LOL.

I have two girls "on the spectrum." Their official diagnoses are:
Autism Spectrum Disorder - Pervasive Development Disorder - Not Otherwise Specified (PDD-NOS)
- and -
Autism Spectrum Disorder - Pervasive Development Disorder - Autism Disorder (Classic Autism).

Although my kids have different diagnoses, its hard to see them that way. They are night and day in general, personality-wise, looks, how they react to things and what they enjoy. Basically, they both have issues in things, strengths in others and its hard to pigeon hole one as "worse" than the other, or more of a challenge when the issues are so varied.

I'm sure a lot of people can relate to having a good day one day, and then spending the next day wiping feces smeared on the bathroom wall and nursing a bite from a mini T-rex...

All you can do is breathe, know your kids and take one step at a time...

Cherish - posted on 07/06/2012

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lol Sharlene,

I know the ASD is like 1 in 150 or 1 in 88 depending on who you listen to.But that is b/c they put everything in there umbrella,and that drives me insane.But kids like Brian with classic autism is 1 in 1000.
I just wish someone else on here had a kid like him.

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Jenna - posted 3 days ago

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There was recently a discussion on a page on Facebook about "disability parking", and there was a guy in a wheelchair who said that "if you don't need the wider bays, don't use them"... and then went on to say that people who need the closer bay for various reasons including severe disabilities but don't need wider bays shouldn't park there either. It turned into an all-out war, disability vs disability.
The whole "us" and "them" mentality is just childish.

Denise - posted 3 days ago

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My panties are in a twist, how does one person with a child of special needs feel her struggles are worse then those of another who has a child of special needs. Yes my aspie, may be able to feed and himself and talk and for the most part function within the family, but I also get to deal with the high anxiety meltdowns that result in him wanting him to kill himself because it is so hopeless and no one understands. I wouldnt wish our gifted children upon anyone and to say your plight is worse then someone elses, well thats just down right selfish. yes your child is sadly in my own words more then you can handle if you want to compare to my child who at the drop of a hat, will melt into a heap of blood on the floor if I wasnt there. We are the reason our children are here and we are the reason we keep pushing them on. We should be supporting each other, not whining who has it worse. I dont need a stranger who actually knows what its like to live a life with the demand of special need kids telling me how easy it is for me, because my kids isnt total autism, whatever that means. autism has many colors not just complete non communicative, functioning. Because believe me a kid with asd/pdd who can speak but doesnt have the full mental grasp of what it is that frustrates them so, isnt a walk in the park either.

A - posted on 03/04/2014

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We have 4 kiddos, 2 have Autism. My son is higher functioning but my daughter is Severe. I actually have quite a few followers on my Autism FB page that have children with classic/severe autism =) https://www.facebook.com/AutismJourney

Michelle - posted on 01/19/2014

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agreed...for those who struggle daily with an extremely difficult situation with our "severly autistic" child it really is annoying

Moriha - posted on 12/14/2013

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I am a mother of a wonderful three year old severely autistic non verbal princess... check out and support my autism via facebook.com/autismmylife

Rachael - posted on 07/20/2013

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To those comparing "sever" and "HF" and us with high functioning children don't get the challenges of those families with kids that are more severly effected - really?! Comparing who has the biggest 'issues'! I really don't want to get on a high horse but I'd love to be part of a SUPPORT group without judgment! No, I may not do the same therapy as you, no I may not approach things the same way as you... I'm just a mother who wants the best for her kids... And they happy to be a lovely variant of " quirky " !! Sorry I needed to rant blah blah I'm done and thanks for the sounding bored :-P

I will say though - I have 4 ASD kids all different levels and generally speakingy very intelligent son with Aspergers is much more 'challenging' 95% of the time than my gorgeous older son who is diagnosed with classic Autism. Even before he could communicate via words OR gestures the 'aspie' takes the cake lol! Then my two ASD girls a just a while different flavor all together ha ha ✌

Lorraine - posted on 07/18/2013

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Hello all,

I am mum to a Amazing 6 year old severly Classic Autism son, he was totally non verbal, BUT with the help of school etc.. he is reading , and has a great vocab mostly single words but he now say "I want juice please mummy" he is still fully in nappies and has no sense of danger at all, and very soo frustrated if something he is enjoying ends etc.. but we are trying to be more structured at home, Love and good health to you all, as we are all on a very personal Journey, no matter where you are on the Spectrum.

Candie - posted on 06/20/2013

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i got daughter with severe autism cant talk but she lets me knows what she wants she is 22 years old now i am having a time trying find a adult daycare program for her.. seems you got have this kind paper or something it seem i am getting the run around. i am here for anyone if they need to talk or anything take care cherish

Heather - posted on 06/07/2013

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My panties aren't in a twist at all. Sorry, I guess I should have put a smiley face on my comment so everyone wouldn't assume I was being mean. :)

Vanessa - posted on 06/07/2013

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Easy Heather! We are just stating an observation, dont get your panties in a twist.

Heather - posted on 06/07/2013

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This is the group for Autism/Asperger's/PDD Awareness. There are going to be posts about Asperger's and PDD. I'd suggest trying to find a group or creating one yourself for "Classic Autism" or "Severe Autism".

Vanessa - posted on 06/06/2013

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I am with you, it is depressing hearing people with verbal children complain about there "PDD child or HF Autistic". They are not the same and dont come with the same challenges as classic/ severe autism.

Cheyenne - posted on 05/05/2013

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If any of you wouldn't mind, my post hasn't gotten any attention and I'm looking for some help and stories like the ones you're posting. http://www.circleofmoms.com/autismasperg...

Thank you in advance and even if you don't comment, I thank you for the inspirational strength I've already seen.

Terri - posted on 04/16/2013

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hi terrie although i live with 2 adults with autism spectrum disorder no 2 children r the same my nephew has classic autism all the advise i can give u go 2 support group in ur area if there is 1 get as much help from family r friends do u live in uk i come from belfast i go 2 support group 4 careers who hav adults with autism because children become adults i am always here 2 listen no 2 days r ever the same all i can say is get in2 ur daughters worls see things as she sees them x

Gina - posted on 04/16/2013

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I agree with the statement that you should treat each child individually. My son started out as severe and has worked his way down to moderate and I'm expecting more progress. For the post that wanted to know what to expect, toilet training, although later than most children, still came completely by the age of 4. He has been in some program since the age of 2. He had no hand preference, would only drink from a bottle, and would only eat grapes and chicken, and could not do anything without someone's help to do it, including play with toys. I saved to get help from a therapist, outside of the classroom and have enrolled him in numerous summer programs. With help it gets better.

Terrie - posted on 04/16/2013

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hi there im new to this but just ike to say that my daughter aged 2 has autism so i understand what most are through i find it hard at times with her low level of learning and understanding , there are different types and moost people combinded them together but i think they need to look in to them as an individual, also if anyone could give me a few ideas or discuss how there c hild is or what the next stage is like so i no what her next level of progress or what to expect i just would like to talk to some whos chld has the same , thank you

Nicole - posted on 02/26/2013

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This platform is for every parent in need of support. Dealing with a child with Autism spectrum disorder isn't something that should be mocked and taken lightly. Please remember your initial reaction to your child's diagnosis. Parent often feel lost and use this as an outlet when family or friends aren't there as a support. Having a child with any impedments such as medically,physical etc is serious. Every child is unique and don't fit all the criteria for Autism so even if it's moderate or servere the family is dealing with a lot.


For me dealing with a child with severe PDD whose unable to verbalize his daily routine in school or to talk about his day especaily when he is being bullied . Is serious. A child whose in his own little world crying out for us to help them is serious . The behavioral issues is serious. Any parent dealing with any diagnosis either cancer or a developmental delay child is serious and shouldn't be seen as different or taken as one disorder overweight the other. It's hard as parent watching the dreams and hope you have for your child in the womb not be fulfilled.

Coreen - posted on 02/21/2013

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So, I have 2 autistic boys....one is low functioning, but get by ok,,,on school basketball team, gets the school mail etc, but my severe son-non-verbal, needs help with everything, got suspended from school 2 weeks ago and still out. He functions like a 2 year old...and I single parent with 2 nt girls...life really can throw us a curve ball...

Shannon - posted on 02/21/2013

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I have two sons that have autism and they are 4 and 5 and totally different from one another. I guess many might view them as "high functioning" because my four year old is verbal and they both can read etc., however they do have some severe issues... not potty training, severe apraxia with my oldest, no understanding of danger, etc. I think it is such a HUGE spectrum disorder that is so hard to just say "my kid has autism" and expect people to understand. I have to say I sometime feel guilty for posting my kids' successes because I have friends with non-verbal severe kids that have autism, severe seizures etc. and they have a totally different view of autism.

Terri - posted on 02/20/2013

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wendy 2 u living with some1 with aspergers might not be as bad as classic autism i can asure u it is i hav a 23 year son and 52 year hubby and let me tell u at this moment i am at my wits end 1 is high functioning the other who is 52 try dealing with 2 people with same diagnoses but so different yet both disableing as each other my nephew has classic autism he is happy in is world my son is a total recluse after having degree and master degree x

Jessica - posted on 02/20/2013

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Hi, you don't sound like a jerk. Having a child with any kind of disability or autism can seem very isolating, I know. I have a 3 year old with moderate to severe autism (depending on what mood he is in) and non verbal. my other child is a 4 year old with PDD-NOS. despite what your child has, there are a lot of people on the same boat as you. I get upset whenever I hear someone talk about there "normal" child and how they are struggling while I can't sleep at night because I'm crying and worrying if my kids will have a normal life. My two are completely different from each other, each has their own challenges, but I worry about my 4 year old daughter more... Girls can be just cruel and this is not a good society for little girls with any kind of autism, my boy, well I know he will be ok. Despite have ing severe autism he likes to be around people and has a desire to be social, just not quite the means. But I understand what you mean.

Jamie - posted on 02/19/2013

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hey, i've got one of each!! yay! no seriously, my non-verbal severe kid is a LOT more to take than my hf 7 year old and 18 month old combined. i feel ya, and haven't read these comments, but yes.....it's a WHOLE 'NOTHER BALLGAME.

Misty - posted on 10/31/2012

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I have a 20 year old daughter with severe classic autism...every child develop differently, have different quirks,ect...I raised my daughter not having many people to look to...not too many other girls out there. She has limited speech, but just about understands everything we say. Been getting grand mal seizure for the past 2 years now & with her seizure meds comes more temper tantrums not fun at 20!

Terri - posted on 10/31/2012

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my husband and 23 year has asd aspergers its like this my nephew has classic autism happy in his world living with hubby and son is so difficult as they will never be happy in this world thats the differencex

Brenda - posted on 10/28/2012

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I have a daughter with classic/severe autism. That is even more unique, as from what I have seen most girls have "aspergers". My daughter is 18. YES, it is different, and most people, even those with autistic kids don't understand. They just assume you didn't do enough therapy.

Christal - posted on 10/10/2012

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Hi Wendy, My son just turned 5 and used to stim sooo much..The stimming(hand flapping) has decreased tremendously! His OT told me to put pressure on his shoulders when he flaps..It does work but i did get him on video on my phone and showed him afterward, he was Amazed! I said"what are you doing here? Why are you doing that with your arms?" He didn't know what to say..Since that day, it has decreased tremendously, and if i catch him, I'll just say his name and he stops..His neurologist told me when he starts to become aware of his behaviors and how strange it looks to other people, he will stop...Seems like it's definitely true!

AmberLee - posted on 10/06/2012

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Hi I hear what your saying. However my son has aspbergers and may be mentally smart but that is trapped within him. He looks normal (sorry for using that term) so no one understands him or has patience for him. He gets very aggressive hits me, walls, etc, has melt downs but doesn't know why. Has no friends, has no social skills, acts like yhe's 5 a good part of of time. I can't even find any place or person that will take or keep him for respite. I understand what your saying because even aspbergers has such a wide range. The main issue is what's best for our children and unfortunately I know for the school system. Having that label of Aspberger or Autism really opens a lot of more doors then say just ashes etc. I've heard that there is talk soon the official label will be ASD syndrome. I personal hope this does not happen because I think it will not do any of our children justice but only take away help from Kids who really need lots of extra support. I guess what I'm trying to say is that I understand how you may be struggling. I'm not sure what you think a child with aspbergers is like. They are as different as a chid with Autism. My son has aspbergers paired with anxiety and ocd, to name a few of the largest things we deal with. I also don't know of any groups in my area for aspbergers only lots for autism. ( sorry this is so long ) My son is now 15 and each day is stressful as he hates school and doesn't really fit in any classroom. I hope it gets easier but I ear it just changes as he becomes an adult not really becoming easier. I hope you at least have a support system.

Marcia - posted on 09/24/2012

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Hello I am new to the group and I alos have a son who is severyly autistic. you are no alone

Chris - posted on 09/24/2012

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Actually, out of all due respect, my son who is 14, now is classified as Asperger's, however he was very severely autistic as a toddler and for several years as he recieved interventions. I do appreciate how alone those of you feel, but most people do not understand that not all children REMAIN classicly autistic, my best friends son, is a another example so it is not unheard of. As much as you hate finding out that people are classifying their kids as autistic who are more highly functioning, I hate hearing that we don't understand. You might not know the history, that's all I am saying. It's a difficult row to hoe for all of us...and frankly, now that my son is so aware of his differences and can't change them, he is often suicidal...so be careful in how the judgement swings. It's hard for all of us.

WENDY - posted on 09/24/2012

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I feel for you and your daughter or daughter in law. My daughter is almost 8 and is severely Autistic and totally non-verbal. She is also a very picky eater.





Wendy

WENDY - posted on 09/24/2012

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You are SO RIGHT!!! It's nice to know that someone else in the world feels this way!!!!!!!!!!! Aspbergers Syndrome, although it is serious, is not nearly as bad as Classic Autism or (in our case) Severe Autism. Aspbergers and Autism should NOT be lumped together because they are not the same. I get so frustrated trying to find Support groups around here because it seems that 80 percent (probably more) of the people have a child with Aspbergers, not the kind of Autism my daughter has. They think they have problems (and they do) -but they have not faced the struggles I have. In fact, I have a child who is Autistic. In fact she is so severely Autistic that she is totally non-verbal. She is almost 8 years old.



If you ever want to e mail me and talk about this, that would be great.



Wendy

Monica - posted on 09/03/2012

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Hello I am a Board certified behavior therapist and clinical director of an amazing company crystal minds new beginning. Crystal Minds New Beginning uses an Integrational approach to therapy. It combines fragments and pieces of Occupational therapy, speech therapy, art therapy, physical therapy and Applied Behavior Analysis (ABA). We also use VB-MAPP, developed by B.F.Skinner, which is a verbal approach to behavior analysis. All of our programs have a verbal component to it whether it is ASL (sign language training), PECS (Picture communication exchange System) and other forms of verbal behaviors, including further development of Tacts, Mands and intra-verbals. We also understand that apart from speech and behavior, academic enhancements help individuals develop healthy self-esteems and prepare them for the later years of their lives therefore we also offer academic enhancements and tutoring programs to get your child on track!

For any questions please visit www.cmnbtherapy.com or email us at info@cmnbtherapy.com

Esther - posted on 09/03/2012

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Hi Cherish! You are NOT alone! :) My son has "classic" autism... it's a tough road for both him and us... but, I refuse to believe that he's made all the progress he will (and yet I have enough life insurance to support him well for two lifetimes...) High expectations do translate into better outcomes and I'm banking on that so I refuse to wallow... and only cry privately... (Autism Daddy really is AWESOME!!)

Donna - posted on 09/02/2012

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Can any of the mothers and / or the fathers (if present in the birth room) answer my questions as they were posted on 08/19/2012 ?

If there is an increase of autism, there is likely no correction of early umbilical cord clamping which blocks the natural infusion of oxygenated blood into the brain cells, while maintaining proper pressure and volume into the expanding lungs.

How many of the autistic children had to be given oxygen at birth. That, alone, demonstrates the infants had early cord clamping and did not receive adequate red cells going into the lungs to now do the gas exchanges that was yet taking place in the placenta. This may mean the child was denied this transition from the placenta doing this gas exchange while the child began to breathe on his or her own.

I am seeing the parents who may have allowed the deprived placenta blood go into storage banks, being silent. They should speak up that they either donated the placenta's blood contents to a public blood bank for stem cell use, or a private one, where they paid to store the deprived blood (about a half-cup) that, otherwise, would have gone into the baby's own need of all suspensions in the whole blood.

The baby needed their own stem cells, currently, and not in the future for their on-going well-being.

No blame to the parents:

The parents are not to be considered at fault. It is the organized medical system that seeks blood from the purest and least diseased blood, from the placenta. This is taught false reasons it is a waste blood product and for this deprivation to the infant.

Unless the parents with often more than one compromised child come forward they did not know about the teachings of 'active management' that encourages early cord clamping, and 1 in 44 children, the damaged children, will continue.

Any early clamping is identified as clamping off the cord before the placenta is birthed.

The medical teams use false reasons for hasty cord clamping to be a benefit to the child, as the child is born bluish. That is normal birth coloring because the child does not pink up until after they are breathing on their own.

The bluish color is because the fetal circulation is always of mixed blood, enriched oxygenated blood (oxygen coming from the mother's body), and this is then mixed with carbon dioxide normal in the child's internal blood circulation system.

The child will be normal being bluish, but pinks up best on the unclamped umbilical and quality of lifeline.

Those parents with any subtle to serious compromised child need to re-examine what happened during and following their child's birth.

What is amazing that groups the autistic parents belong to, absolutely refuse to re-examine the protocols of the afterbirth care. This may be a cover-up for the medical allowances in protocols, called a standard of care. The true standard of care is do no harm.

The austic groups encourage only pressing on to assistance of a life-long likely medically caused impairment which is totally avoidable, but only if the expecting parents were so informed. Many or most of the private autistic groups see no good reason to review the afterbirth care.

Often those experts working in such groups are blocking this review because they may have a conflict of interest as being likely part of the organized medical system, and the blood banks. This includes encouragement to put the baby's blood into private cord blood banks. Should the parents store their baby's blood. No, they should insist the baby gets all their own placenta blood. After all, if there are any tests the baby has too much blood, too thick of blood, all false reasons given for hasty clamping, there is always blood-letting. It has never been done to the research I have used.

The medical falsehoods on human reproduction to the afterbirth care of the newborn citizen are yet in the local public school libraries and in the health, biology and science textbooks.

These are all paid for with our tax dollars. The taxdollars also assist those with impaired children, and will continue to pay higher education and medical-costs (medications) of what the organized medical professions yet are imposing.

The imposing of hasty and early cord clamping is premeditated afterbirth care, that is, it is intentional discretion of the medical person.

And, even if you were to call 9-1-1 for any emergency birth, they are all coming to clamp the pulsating quality of lifeline, as to their improper training.

This is always a local problem and such incompetent training can certainly have those instructors be held responspible for the false teachings and to be held accountable to contribute to the cost of a now imparied child.

The problem is that it is a local situation. And for a wrongful death, those that did not do proper research can be sent to jail, plus pay costs to the family who had their child die, after hasty cord compression.

The standard of care, is do no harm or the risk of it.

These instructors of doctors, medics, firemen, are falsely claiming they have to do this hasty cord clamping as alleging it is a benefit to the child, and to save the baby's life with revival off the cord. (Dr. Oz, see emergency birth). This is false medically belief, as all creatures benefit of more blood not less. The New York Health Department would not correct the statements made on T.V. of Dr. Oz. Why not?

The benefit to the child has always been known. This is to receive 'all' their natural placenta blood infusion but that cannot happen if someone is compressing off the umbilical cord.

So if you wish to review the facts doctors all knew this (since 1801) or ought to have known this, and all instructors, TOO, do read the various free downloads at www.medical-truths.com Do pass them on to an ethical law firm, if you may find one, ethical to stop the insane hasty cord clamping by facts of truth, testable, visual, and measurable facts that Courts allow to determine who is telling the truth or not.

Sure, reading takes time and effort, but it is well worth time. This is if you want others to prevent their children from being injured like your child was damaged, and preventable, and if only you knew the facts or truth.

So the parents are included as being an innocent victims for their allowing any false medical protocols, or the local standard of care allowed. They simply were not informed to make an informed choice.

If you would do things differently than what happened during the child's birth, share this letter. And, would you have and a signed birth contract (not an unsigned birth plan), all revival is to be on the untied or unclamped umbilical quality of lifeline? If so, please, then do make comments at this Petition, to protect babies and mothers, too.



www.thepetitionsite.com/1/protect-babies-and-mothers-too/



Remember, again, this is an organized medical false teaching. Those most responsible are ACOG policy, before and since 1998, they directed all babies be instantly cord clamped. Their reasons are known false. What may be concealed is that medical doctors do, or the hospital they work in, seek the blood for undetermined profits and share these profits to those with a stakeholder's interenst in selling human cells.

The reasons are known to be based in false medical studies and birth experiments that never allowed a control group of naturally or primal birthed babies who did not have their quality of lifeline hand-squeezed off, tied off, or clamped off.

The truth: The children where medical persons do not interfere with the natural blood infusion process, thrive. (report of Dr. Mavis Gunther, 1957, London, UK). These children, like other placenta creatures who get all their placenta blood, do not have any forms of autism, muscle damage (CP), or the various subtle to serious brain disorders. They are not sickly children but are stronger children able to meet competition for all areas of life's challenges.

This is because these no-umbilical-clamped babies and animals had all their placenta blood infusion through the umbilical cord. It may be that simple of a solution for the future babies, to be allowed to be normal.

Those now vitimized children can only hope for tolerance and assistance that the local area can best give them.

Ask the victimized child, if they can reason, would they have wanted prevention, rather than cures or money, that a civil-tort lawyer would get them, but not stop the wrongful teachings, as they are criminal and must be dealt with in a local criminal court. All harmful medical protocols have a duty to be reported, and by anyone or all informed.

The child was imposed on to give up their placenta blood to others; and, the parents did not give true informed consent to weaken their offspring, ever. They cannot legally sign a waiver of the child's legal rights to be protected and given security of their person, being their own blood going into their own body and need to remain as healthy as they were in the womb.

Please, do not forget the power of prayers.

Blessings, to all, Donna Young, Tel: 250-782-9223

Lori - posted on 09/02/2012

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Wendi, I don't try to stop my boys when they flap. I ask them what is wrong, encourage them to use their words, etc., but unless the stimming is dangerous, then we just try to replace it by encouragement rather than pointing it out and stopping it.

Wendi - posted on 09/02/2012

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Our neurologist was unable to tell us where our three year-old son is on the Spectrum. I don't know why; it may be just too soon. It's often hard to know what behaviors are those of a three year-old and which ones are those of ASD. Sometimes I think that he is higher functioning. He does make eye-contact and is somewhat verbal, although he does have apraxia. But yesterday I saw him flapping his hands for the first time and got quite upset. Does anyone know ifparents are supposed to try to stop the hand-flapping and other gestures? If so, how do you go about it? Joshua has recently started ABA and speech therapy, but because of summer vacations the therapy has been very inconsistent so far. Very frustrating! Thanks!

Heather - posted on 09/01/2012

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My son is 15 and was in EI at age one and diagnosed w Classic Autism and 21 months...

He is more social and outgoing, but not appropriate w being social and does not understand the concept of stranger danger, or any other danger for that matter.

He is one of the most severe Autistic children my nursing agency has seen, his dr might have one other patient that is about as severe...

Autism is Autism in the fact that therapies can help a child improve no matter what age they are and what their diagnosis is...

I have found parents of higher functioning children who struggle just as much as I do to obtain services that their children desperately need... But, bc of being higher functioning, some of their services are ignored or deemed unneccessary when they are much needed - they just struggle on a different level and in some different areas than my severely Autistic son does...

So, in that sense, we are all in this together bc we are all trying to get the services that our children desperately need in order to improve their lives and to help them to gain as much independence as possible...

Cherish, I sent a bit of a long e-mail about my son and some of what we go through...

I have come across more severe needs children in my home town and also online as well...

I think I talk more online than I do in person as it is hard to talk on the phone when my son is screaming and my dog is barking and my typical 11 year old daughter needs somethings...

So, e-mail and text messaging have increased w in the past year...

ABA under a BCBA has been most beneficial to my son, but he is still physically aggressive w SIB...

He is nonverbal and is not potty trained...

He needs a program other than the severe needs class offered in all of the high schools in our school district and getting him into the Autism center is difficult as the school district would need to pay for it and not my son's Waiver...

So, I will have another IEP meeting to go over what he IEP needs that is missing and I will also see how he has aquired skills and made progress on his past IEPs...

I was finally able to talk to a BCBA about some of these things and am in the process of doing more bloodwork to update what was not available or was unknown in 1998 and to set up a behavior program in home as well as OT, PT, speech evals outside of school and an eval w the neurologist to update my son's case and see if we have missed anythings...

The parents who do have children w severe Autism are out there and we are just struggling like you are to give our children what they need to take care of their needs and to ensure their safety and the safety of those around them...

It is not easy and we just have to do what we can w what we have available...

Then, knowing what is available and then fighting to get those much needed services that are being refused to our children can keep one busy...

But, I believe there are parents out there who stay busy w their children and who don't get out much bc it is harder for them to actually go out w their children...

Respite does help...

My respite provider is able to help some w my son and he does well. there...

His behaviors are mostly at home and he has had some incidents outside of home, but they are rare...

His name is also Brian...

Lori - posted on 08/31/2012

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We have three sons, one with HF autism, one with classic autism moderate severity, and one awaiting an official diagnosis but currently given a PDD label so we can start ABA.

Joni - posted on 08/31/2012

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Autism is autism no matter where they are on the specs. I have a 2 1/2 year old that has not been diagnosed yet by the ppl whom matter but he does earliy intervention and speech therpy.we are waiting for his appointment to have him diagnosed. He is 2 1/2 non-verble, has the hand flapping when he gets excited,covers his ears when he gets upset he has a lot of the signs of being autistic. As a mother 2 3 children having one older than him and one younger its very hard no matter where a child is on the specs they are all very hard to care for and meet their needs. I'm new to autism and know nothing about caring for a child that is autistic but I'm trying to learn day by day. I must be doing ok with him because early intervention said they believe he is autistic and they can believe how social he is with his sibilings. Sorry to ramble but as I have know one to talk to on this subject my husband is just heartbroken and can't discuss the issue,yet so am I. But talking about it make me feel better. The more I learn the better it makes me feel. So sorry if I offended anyone by saying autism is autism all I was trying to say is its so hard and heartbreaking to care for our children that is no matter where they are on the specs. God bless you and all our children. Maybe someday we will find out why and how.

Christal - posted on 08/30/2012

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I saw a study that it is now 1 in 44 kids in New Jersey r showing signs of autism

Judi - posted on 08/24/2012

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My son was first diagnosed with "Classic Autism", then 2 &1/2 years later he was rediaganosed with PDD-NOS, so I've had both classic and pdd-nos in the same child. Some people (strangers and casual teachers) think that this change in dx was due to luck, others that know me believe it was hard work and non-stop play therapy, training, teaching, dinosaurs and some more play (with maybe a little tears and meltdowns along the way).

Jennifer - posted on 08/22/2012

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My daughter has classic autism. She is 9 years old and would be considered moderate/severe.

While she is verbal, her language is all functional and she uses only one or two words. She can say enough to get her needs met (want juice, go bed, cookie please) but she has no expressive language. She cannot answer questions if she hasn't memorized the answer and she will repeat any question asked to her rather than answer. Her receptive language is fine and she understands everything I tell her, even if she doesn't always listen.

Michelle - posted on 08/17/2012

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Cherish, you are ABSOLUTLY correct. There is NOTHING like severe autism! I too have a child with severe autism and a child "normal" functioning. We were fortunate enough to have had Ethan diagnosed when he was very young. At 11 months old I knew something was not right, sure enough our worst fears were confirmed 5 moths later. Ethan started early intervention at 14 months and is still in intensive education that is 100% geared towards children with severe autism. He will be 11 soon and he still is as aggressive now (if not more) than when he was younger. Like you meds help, but are NOT a cure. I can relate to all your struggles. Non-verbal, not potty trained, and overwhelmed beyond belief! On a positive note, there is help out there (not fantastic, but "they" are trying). It's different in every state, just as each child is different. In our situation we had to face our second biggest fear, and that was agree to have Ethan placed in an appropriate group home. THE HARDEST DECISION WE HAVE EVER HAD TO FACE!!! Unfortunatlyl, up to a TEN YEAR wait. But we know in our hearts, that will be the best place for Ethan to be in the future, so our daughter will not have the dreaded burden of ever having to make that decision if (God forbid) something happens to my husband or me. We realize there is no cure, and there is no point for us to dwell on "how did it happen", so, for us, the safe, appropriate living and educational situation for Ethan future is where I focus my energy. YES, severe autism SUCKS, but it is not what defines my son. He is first and foremost, cute, funny, and playful, he just happens to be diagnosed with severe autism. It is not the end of the world, it is the beginning of a beautiful differently abled child, and we could not love him any more or less... Good luck and know, you are not alone.

Cherish - posted on 08/16/2012

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Marie,
I hear what you are saying...All I am saying is severe autism to me is NOT the same as HF autism..That's all.
My oldest has "HF autism",it is NOT the same as severe autism.
I wish that they would get rid of the spectrum and call HF autism something else.
I am sick of hearing people say "my neighbor/nephew/cousin..etc has autism,and he/she can do..." and 99% of the time the kid that they are talking about has HF autism.
Nobody that I know had a dx of classic or severe autism when they were little,and then had HF autism as a adult.
Adults w/severe autism have VERY different needs than people that have "HF autism"
Ya know I posted this originally to see how many parents have children w/severe or classic autism.The few people that do have children that are not HF can relate,I am sure.
Because the "spectrum" IS so broad,MOST people have HF children,and like I said,HF is NOT the same...

Marie - posted on 08/14/2012

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I have a daughter who is diagnosed with Autism. I am so sick and tired of hearing, "Wow, she doesn't look like she has Autism".....You must understand that my daughter will be 18 on August 19th. I have worked with her everyday to get her to where she is now....As a small child she presented with what some are calling "classic Autism"....Now she is a High Functioning person with Autsim.....These kids can and do adjust, not all of them make the greatest strides....The Spectrum is large, and many of us are advocates for all individuals on the spectrum, REGARDLESS of what diagnosis they have....

Sandra - posted on 08/12/2012

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I'm pretty sure my grandson has severe autism. He is 6 years old, non-verbal, not potty trained, although we have tried several times. He sometimes has sleep issues...still has meltdowns...must have a set schedule...etc. He is on several meds, sees a lot of different doctors. He is very, very picky eater...hardly eats anything. Will not eat meat or any table food. He is allergic to dairy, and has had 3 sets of eartubes. Has had a lot of ear infections. Brushing his teeth, cutting his hair are "impossible". Does this sound like your youngest son?

AISHA - posted on 08/11/2012

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:( my son is 5, not potty trained and nonverbal...he is aggressive when he is frustrated and/or wants something. He is starting his first year in kindergarten in a school that has primary 5 kids in the class with alot of assistants to help out. He is very smart w/ computers, iphones, ipads and at school they have to disable the internet b/c he will sometimes log on to youtube from the ipads they use. LOL....anyways he is delayed in so many ways but is ridiculously smart in area's such as computers.

Chris - posted on 08/11/2012

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I definitely understand your feeling alone. Although 14 yo my son is now more like an Aspie, there was a long time when he was very young that he was non-verbal and violent to the point we felt imprisoned. He is now verbal yet struggles with rage among about 1000 other issues. My best friends son was even more severe than mine and he is practically a fully functioning teenager now. I know this doesn't happen with all kids, maybe not even most, but what you may find among us that you didn't expect, is quite a few moms who have been through what you are experiencing now. It is a tough, tough slog, but we are out here for you.

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