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Topic : 12/19 Parents’ Ultimate Test: Dealing with Autism

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Created on : Thursday, December 13, 2007, 05:12:39 pm
Author : DrPhilBoard1
The ultimate test for any parent is loving a child who is difficult, sometimes frightening, to the whole family. It’s a test parents of autistic children are put to daily. Ten-year-old Luz throws screaming tantrums, barks like a dog, and tells his mother, Sara, that he plans to kill her. Sara has long felt despair at Luz’s out-of-control behavior, yet she was shocked when a doctor diagnosed him with autism. Go inside the daily life of this family, see Luz’s wild behavior caught on tape, and learn why Sara’s main coping mechanisms might be putting her at risk. Then, a member of Dr. Phil’s own staff achieved miraculous results for her autistic child and her whole family through an intense program. Could a similar treatment work for Luz? Plus, what causes autism? Several recent media reports and high-profile parents such as Jenny McCarthy have pointed the finger at vaccinations. Is there a link? Child care expert and pediatrician Dr. Jim Sears weighs in. Then, imagine having a crime committed against you, but not having a voice or any way to tell someone you’d been wronged. Some mothers in Las Vegas say that’s exactly what happened when a teacher allegedly abused their autistic children, and they’ve filed a lawsuit. Hear them recount the painful details of the alleged abuse. What are their chances of winning in court? Share your thoughts here.

Find out what happened on the show.

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December 28, 2007, 5:44 pm CST

bullied child

Quote From: fromthesquare

That poor child.  I can't imagine what school must be like for him after all he has been through.  Schedule a meeting with the school superintendent.  They meet with parent's whose kids are in trouble, having trouble, etc.  They are protecting the child that is bullying your son and not protecting your son well enough. You have the right to know who hurt your child so badly and to speak with that child's mother.  You are his voice.  All he can do is cry when going to school.  You have many more channels available to you.  Start by calling the school district and meet with the superintendent.  Last resort- get a lawyer.  Your son deserves his right to an education without fear.  The story breaks my heart.  I will pray that you get resolution. 

You poor thing!

 

Your child does not have to take that and neither do you.  Your child has rights. 

 

Each school district has a "Regional Superintendent of Schools.”  He is over the district; contact that person and your area Special Education department that you work with on your child's IEP.  Something needs done to protect your child.  The child that has assaulted your child could and/or should be arrested.  More than likely you superintendent is aware of what is going on and will not do anything to protect your child. 

 

My son is now 18 years old, he reminds me on occasion that I was not there to protect him in grade school when he was bullied.  

 

We are the only ones there to protect our children, when my son was at the point of starting school, an elderly friend with a disabled child told me to "never" back down from the school systems and "never" let them think they have the upper hand.  I have not and my son has done great in school.  Be aggressive.

 

 
December 29, 2007, 7:43 am CST

We as parents have alot to worry about with Autism

My son Gaibrul is 5 now.  He has spent his whole life in and out of the hospital with a multitude of illnesses.   He has genetic carrier Cystic Fibrosis disorder  for no explained medical reasons.   Based on Sweat tests he doesn't have this illness, yet has ongoing symptoms with the bowels and intestines of the disease.   Along with this condition Gaibrul has Manneristic Disorder and Autism. 

 

The going fad of doctors worry me because they want to label  most autistic patients with Autism as misdiagnosing them as ADHD or ADD...this illness in itself is a copout for alot of schools or officials that just "don't know what a childs needs are medically".   Most neurologists we have met with are beside themselves.   Wanting to put young children on serious Psycological medication, when these rarely help but commatose and incopasitate the individual.   Thereby they learn nothing and amount to nothing in academics.  Besides the drug aspect of the issue no physicians want to get their feet wet with any family.   They don't feel comfortable making an educated decision on what the diagnosis should be or would be, nor do they discuss these "ideas" or issues with each other.   The lists of doctors we have seen should be coordinating their efforts in Autistic or any illness in children and work together, but  instead against one another for an ultimate answer.   The medical bills go on and on with no end in sight.  You ask yourself often why do I put my child through the agony of these prying eyes that have no forsight, no future outlook for them, sometimes the here and now isn't even available.  

 

So as a parent you have to make educated guesses, and hypothosis yourself.  You have to comb throught the doctors and keep the ones you feel are benefiting you child and try to keep finding those.   Working with your insurance company having many of the doctors you need not on the list.   Having to struggle to find medical coverage where there isn't any.  

 

The more we research and studying genetics and medical causes they may tap a cure...maybe things like altemers and Parkinsons disease are allinterwined.  Could be that there are a few doctors out there that might want to get some recognition to look into these genetic fibers and find something relative!   For us, the partents and families of these children I am concerned.   WE are tired of the back stabbing, the odd looks, the prejudices of our children.  We want ongoing unlimited care for them in schools and society.

 

After much persistance with Medicaid, and my senators we had some headway in getting Gaibrul quilfied for coverage.   I worry because the average house hold cannot fathum how much it is finacially to cover the expenses of a child with any limitation.  When you have to make self sacrifices like make up and hairdos to pay for medication or doctors appointments.  The love is expressed in daily selfless acts some so tiny the average person cannot see it.   The more you are passive with your school system for what your childs needs and wants are the less likely they are getting what they need.  It is tough enough to consider both the families rational thoughts about what this disease is and does to your child.  Yet the hardest hitting issue are the very doctors and communities available for "support".   We live in New York state where every parent is a suspect of child abuse unless proven "innocent".   I couldn't tell you the countless hours we have spent with doctors that directly tell us we are only "practicing medicine".   I worry about the thousands of dollars we have spent in treatment to not only find a reason, but no objective direction of a diagnosis.   You could have 1 out of 10 doctors think it is something entirely different and the average school board will conclude on the one MD.  

 

I totally empathise with any parent dealing with the pain, and anquish, but also the joy and love.   Those everyday little things that often avaid the average person, we see in the blink of an eye and appreciate it for what it is.   Every day is a challenge, but the little things keep us going.   A great song to play when you are feeling down and your heart is sinking is Rob Thomas "These Small Hours", off the Meet The Robinson's Disney Soundtrack.   Time really does fall away and these small hours still remain...they remain in our children's hearts forever.  

 
December 29, 2007, 8:06 am CST

Wasn't sure how this works...My son has Autism

There isn't alot of information or tangable care here where we live.  Sullivan County in New York is just coming to grasp that this is a widespread condition with alot of children affected.   My son goes to a special school BOCES it is a great program dealing with the much needed one on one and therapies needed.  The teachers have the extra training needed that the average level schools both private and public do no accertain.  

 

Gaibrul is doing much better with the intense schooling.   During the breaks like now he falls a tad short with communication only because the structured program isn't there.   He is out of school for the next week.   I see differences in him when the environment is changed, they tend to like order.   Some kids with autism really have a big problem with a moved picture or furniture moving when they know it has always been in one corner of the room.   They tend to score highest on projects where do you see what isn't the same examples.  Like on Sesame Street which one of these pictures isn't the same what doesn't belong.  

For instance does a bananna go in the front room or the kitchen.  Things they like to do is organize books, put away groceries, anything that has a systamatic pattern.  

 

I don't know if there will ever be a way to find out a pattern of why?   I know in our family we have alot of ARMY and we were exposed to vaccines that the average families people don't get.   I know of 2 other families with autism children that both served in the armed forces.   Also, high fevers early in life.   Convulsions with no epileptic leed-and pass most EEG's as normal.  Sleep with eyes open.   There are patterns of every case and the more we open up and talk about it the more we can get from it together.  If we all stand up and put our hypothosis down...the doctors have to listen.   There are just too many of us not to. 

 

My advise to you is.   Give yourself Patience.   If you don't have it obtain some.   I have alot of problems with this and often we have to not push, put pull back and watch.   Lots of hugs, kisses, and tears!!!!   Sharing is important too.   Interactive play, my son likes the memory games.   Stacking cards and lining up cars.   We the drama and agression come it is like following a bumper car.   Keep anything and everything out of the way that can harm them.  Remind them to breathe.   Don't engage!   Don't try to restrain!   Give praise when they calm down.   These are the best things I can tell you because I am still learning myself. 

 

Remember Rob Thomas...All Life is Changed in these Small hours, these little wonders oh, these twist and turns of fate.  These Small Hours Still remain. 

 
December 31, 2007, 4:50 am CST

12/19 Parents’ Ultimate Test: Dealing with Autism

Quote From: feelingalone

Hi,

Im writing this note because i seen your show today about autistic children.  I was so interested in the things i heard and saw that it touched my heart, and it brought me to write to you.  I am a 34 year old stepmom of 2 great young men, and one of them is autistic and also has tublar schlerosis, he will be 19 christmas day. I find it very hard and very tiring on a day to day basis.  He is a pleasure to be with and to do things with most of the time, but we have times where life in this house is pure hell and that is puting it very mildy.  He was at one point very aggresive towards himself and anyone who may be around him.  Today he still has the potential of being aggresive, We try to take it day by day, and every day is a worry.  He is on alot of medication, and that is also a worry for both me and his father.  I'm really interested in more information from other families who have children or young men  that have a disability.  I would love to hear from anyone who got ideas and ways to help control some of the outbursts along with the many other inapropriate behaviors such as my stepson does. Also i wanted to let other parents know that they are not alone in this, there are alot of families who have to go and live with this everyday.  Which i'm learning now,  Please write me. Thank You,  Sincerely Tanya

Well,

let me first say..being a step mom is an big job they should hand out medals..I am a step mom.

you my friend are a strong woman., then you have one with a disability..You really must love your husband.He should kiss the ground you walk on daily...and THANK God he found you

 

My Nephew has autism, and the dr. had him on alot of meds, he is not on any now. and he functions well, but not like normal boys his age. he needs help. he is very aggresive towards others. not sure what they will do next.His mom HAS to do something quick...

he will never live on his own, perhaps a group home? who knows !

Bless his heart he walks around like a deer in the headlights.. sadest thing 

I asked  him one-day what he was thinking about..he said"PIGS & FOOD"

I love him dearly

 
December 31, 2007, 12:07 pm CST

Terrible School

I must say that I was appauled to find out how little the school actually did for these children. Last time i checked a teacher was supoosed to not only teach, but care and understand the child's needs. Why did nothing happen to this teacher? Why was she not fired or arrested? I know the answer to that. The process to fire a teacher is numerous, and I do mean numerous pages long. They pretty much have to commit murder to be fired (especially in the area I'm from). Now, I know teaching is in fact a hard job especially when you're dealing with children with special needs, but a person like that doesn't even belong in society, let alone as a teacher. Now, I'm sure if the parents were millionaires something would have been done. I mean heaven forbid a school's reputation has a scratch on it. I suppose to them it's better to let abuse go on than to damage their precious reputation.

 

Parents, I urge you to listen to your child  if they tell you anything odd that goes on at school. I'll use myself as an example. I was bullied for years by the same group of girls both in school and on the internet. We went to the school about it, but like everything else, it was swept under the rug. I soon found out that this was going on with other girls and even guys. Once again the school did nothing about it. This went on for me from 1999-2002. I graduated in 2005. The bully epidemic still was rampid until in May of 2007 a kid brought a gun to school. Luckily, no one was hurt or killed. This probably sounds like an unnecessary tangent because I don't have autisim, but a couple of the other kids who were bullied where special needs children and although teachers didn't hurt them, other students did. So parents and and anyone else who has the pleasure of working with children, please, if a child is showing any guarding or has any mysterious bruises, find out what's going on and contact your school. Get the police involved if the school won't listen or if you have the means, call a lawyer.

 
January 1, 2008, 3:42 am CST

Incomplete Autism Information

I think that Dr. Phil does an excellent job helping his guests & viewers 99% of the time. Unfortunately, this segment on Autism was not a good representation of the majority of individuals with Autism. This show was unfair & seriously incomplete. Yes, it's true some individuals on the Spectrum do have violent behaviors (there a lot more without Autism who are just as, or more violent!) , but that is not the core issue with Autism.. I feel Dr. Phil needs to go back & present all the faces of Autism, because there are many. The Autism Spectrum Disorder is not just about violent, out of control children. This is a spectrum disorder, so no two are the same. These individuals, depending on the severity of Autism & dual diagnosis, are terribly frustrated due to the inability to communicate their wants, needs, feelings, etc. There are many reasons a child with Autism may act out.........just as there are many reasons a child without Autism may act out. They live in a world within themselves. If you or I couldn't express our feelings, thoughts & ideas, we'd become frustrated also. It happens all the time!! If you or I feel we aren't being heard or understood, we may come across as aggressive or angry in trying to get our spouse, boss, friends, etc. to hear us! Early intervention is the answer to the success of communication strategies & behavior modification. These children (& adults) have sensory issues that weren't even presented to the public! Fortunately, I live in an area that provides outstanding services to those on the spectrum, regardless of their age, income or severity. For some excellent information (that was not presented on this show), go to KOMU.com & look at their series titled Combating Autism From Within. This series will show you some of the many faces of Autism that Dr. Phil failed to show the public.
 
January 1, 2008, 4:57 pm CST

Its so hard for parents

I know that my opinion probably doesn't count but I do believe that the true test is accepting that a child truly is autistic. My father's eldest son is autistic and he is the biggest sweet heart ever! He has problems with listening and understanding things he feels are unfair. This is where the conflict starts between him and his new step-mother. He'll start crying really loud and he wont stop because he doesn't understand. This is hard for my fathers new wife to understand. she thinks that the only reason he cries like this is because my father dose not discipline him right. She thinks that he babies him for no good reason and that my brothers autism shouldn't effect the way he is disciplined. I think that peoples understanding that an autistic child is different, is the biggest problem for an autistic child's parents.
 
January 1, 2008, 5:22 pm CST

incomlpete information

Quote From: boscolab2

I think that Dr. Phil does an excellent job helping his guests & viewers 99% of the time. Unfortunately, this segment on Autism was not a good representation of the majority of individuals with Autism. This show was unfair & seriously incomplete. Yes, it's true some individuals on the Spectrum do have violent behaviors (there a lot more without Autism who are just as, or more violent!) , but that is not the core issue with Autism.. I feel Dr. Phil needs to go back & present all the faces of Autism, because there are many. The Autism Spectrum Disorder is not just about violent, out of control children. This is a spectrum disorder, so no two are the same. These individuals, depending on the severity of Autism & dual diagnosis, are terribly frustrated due to the inability to communicate their wants, needs, feelings, etc. There are many reasons a child with Autism may act out.........just as there are many reasons a child without Autism may act out. They live in a world within themselves. If you or I couldn't express our feelings, thoughts & ideas, we'd become frustrated also. It happens all the time!! If you or I feel we aren't being heard or understood, we may come across as aggressive or angry in trying to get our spouse, boss, friends, etc. to hear us! Early intervention is the answer to the success of communication strategies & behavior modification. These children (& adults) have sensory issues that weren't even presented to the public! Fortunately, I live in an area that provides outstanding services to those on the spectrum, regardless of their age, income or severity. For some excellent information (that was not presented on this show), go to KOMU.com & look at their series titled Combating Autism From Within. This series will show you some of the many faces of Autism that Dr. Phil failed to show the public.
 People have got to start somewhere talking about autism - I am quite mild about this.

For people with a problem in the spectrum it's the sensory issues that counts.

But for parents the first confrontation with autism will be through the behavior of their child.
In the first years of a person with autism they certainly can't speak for themselves. Parents do the story for their children. Most likely children that have violent behavior will get earlier attention to their disorder than the ones that suffer more inside themselves. So the violent behavior is an important signal.

Parents have to learn to read their children, understand their way of thinking. Understand that things that seem to be 'nothing' can be a real problem to their children. It's important for the child the parent(s) get informed. To be able to reach the parents you will first have to listen to their story and make them clear they are not to blame, etc. Only then you have an entry to educate them.

I would advice parents to read forums of adult aspergers who write about their lives. There you can find good information, and you'll get the information from different people. All people have different personality, what works for one doesn't always work for another.

I have asperger and have learned much from the forums myself (sorry, not in english). And found out that some things I didn't expect to have anything to do with asperger did.

Problem is that parents can't tell what goes on differently in the heads of their children, and the children can't explain either. Their way of thinking is normal to them. When parents are educated they can help to educate their children how to protect themselves and learn tricks to be able to handle live.
 
January 4, 2008, 2:42 pm CST

Cause of Autism - read this newsarticle

Quote From: fourcutekids

I am a mother to a son with Autism. I can tell you that he got it from vaccines. His own pediatrician knows this as well. His ped. no longer suggests anyone get vaccines because of his knowledge that it DOES cause Autism. His own grandson also has Autism. Both his grandson and my son were both given the same vaccines at the same dose with other vaccines as well which is what caused it.  Some vaccines contain higher levels of mercury than others so when you pair them all together and give  them to a child all at once ( my son received 5 shots at his 18 month check up) it will and it DOES cause Autism. Now I have read extensively on this topic and what I find to be absolutly STUPID is that they say it doesn't cause Autism but causes symptoms LIKE Autism. I am sorry but if it causes symptoms like Autism and it doesn't go away then YES IT DOES CAUSE AUTISM! I am sick and tired of people saying no it doesn't because it does! No one wants to admit that yes these vaccines cause it because they don't want to be wrong and they don't want to deal with getting sued. To the previous poster that said Autism runs in the family etc etc. No it doesn't. Its NOT in your genes! Its a random thing caused by various things and vaccines is one of them. No one in my family or my husbands family has anything remotely close to Autism for my son to get it he got it from the vaccines. He went from talking up a storm to 4 months after his vaccines slowly not talking at all and finally ended up speechless till last year! I have went to many many meetings to meet other parents who have the exact same problem and the exact same thing happen to their children and we all have the same stories. They put tons of preservatives in vaccines now compared to when I was growing up and its these preservatives that is causing Autism. That is why there is such a rise in Autism cases! WHy is it so hard to believe? Sure you parents out there don't want to be guilty of injecting your children with harmful things but to come out and say no you dont' think its caused from vaccines is just plain ignorence. This subject really bothers me because I was lied to about what was really in the vaccines I allowed them to give my son. Had I been told the truth I would have never allowed him to get those vaccines. Ever since he was diagnosed with Autism none of our children get vaccines anymore. They have been very healthy since quitting vaccines. When they were getting vaccinated they were sick constantly and in and out of the hospital for various illnesses. Look at people who get the stupid flu shot! They get the vaccines and END UP SICKER than a dog and probably sicker than if they just chanced it and gotten the flu on their own without the vaccines! So if its not vaccines then how do you explain that? I have done my homework on this issue, I just wish everyone else would too so we can stop hearing all this nonsense saying that it doesn't cause Autism!
 Autism is not caused by vaccines. All the major researchers that claimed this, I think there were about 7 or so, have withdrawn their conclusions.
Read this link here, copy and paste in your browser:

http://news.bbc.co.uk/2/hi/health/6369347.stm

Autism comes in different 'grades'. From my twins, I knew by his age of 3 that there was something wrong with him.
When he was 12, I was sure it was autism. (By that time my brother in law had two children, one with PDD-NOS and one with autism.) I went to a children's psychologist and she told me it was not autism since he was reacting too socially...
Two years later a psychiatrist confirmed that I was right. My son went to a special school and so the twins were split up.

I read a book then called 'Brain deceived: When autism doesn't look like autism'  written by a Belgium expert (as far as I know, not translated in English) and found out that the troubles that my daughter had, were also caused by autism.
Just not the kind we can recognise so well - she is so smart, she felt so different when growing up and survived by watching kids her age and then copying their behaviour.
The psychologist who talked with her for over 1,5 hour started our converstation with him that she was not autistic... Can you imagine that, she was able to 'fool' him - not intentionally- too, a very experienced psychologist. When the conversation went on and we went through all her childhood and teenage problems, he later acknowledged our own conclusion: PDD-NOS. She was already 20 years old then.

Since the twins were split up, we began to see that the other twin did not do well at school. He claimed that he was glad that he did not needed to take care of his brother anymore,. But we guessed that their togetherness had helped them through their life. He was diagnosed with PDD-NOS and ADD a while later. With his ADD he has able to cover up some of his autistic problems, he was not shy like his brother, he could talked his way out of things, but he needed as much help in the end as his brother

It is so difficult with these children, since, apart from the youngest, the signs are not that clear. They have developed coping skills but are not really surviving 'normal life'. They need a lot of care, and I mean a whole lot.
We constantly have to adjust to them. The youngest has problems with communication, when my face shows emotion when I talk to him, he really gets upset. So when he comes home, I have to withhold any emotion when he walks through the door. I feel often that I am walking around with a mask - trying to cover up most of my feelings, otherwise he will get upset.

Every event is a challenge. Christmas was a challenge, so was New Year's Eve. Daily living is a challenge, like showering or walking the dog. Even asking them to shower is a problem, and so is trying to let them do some chores in the house - you have to announce everything at least a day ahead.
They need a lot of structure, and I am trying to structure their life as much as possible (and I hate structure myself, sigh).
There is no chance that they will be able to have jobs. I spend sometimes 2 days a week coordinating/organising the help they need, or giving feedback to the therapist from my youngest son.
The other two don't even have a treatment or therapy - there is hardly therapy available for these young adults.

As you can imagine, having three children with autism, it opens up your eyes and I see a lot of signs in my partner as well. Our relationship is difficult because of the lack of reciprocity (I had to look up that word in a dictionary, so I hope I choosed the right one! :-) ), so I am feeling quite alone living amongst my autistic family.
They say that amongst the blind, one-eye is king, well it is not: it is the lonesome place to be.

On my husband side of the family we have nephews with also autistic signs and problems similar to ADHD. But because they are 'highly performing' they do not get their diagnoses (or do not want to talk about it).

Why is autism so spreading? Because it does runs in families. When I count relatives from my in-law parents, there are 5 people diagnosed with this disorder plus 3 undiagnosed (including my husband).
So 8 people are affected from just one family. One of my nephews is expecting his first baby and to be honest, I am worried that this will go on further. Hopefully they are lucky.

I gave up my dreams of becoming a grandma in the future and try to survive every day. I sleep about 5 hours a night, am completely burned out and had to give up my job years ago.
I gave up worrying about the future,  since living just one day at a time and caring for my children is hard enough. I am not able to think further ahead than just one week - and I really need a calender for that.

Sorry, I just needed to vent these feelings, there is so much talk going on about autism. But believe me, vaccines are not the cause of autistic problems. It wonders me that the news from the article mentioned in the link above is not familiar in the US yet.
Hope it will help parents to get rid of the guilt that they have vaccined their children.


 
January 5, 2008, 4:48 am CST

Disappointed in Dr. Phil

I was so excited when Dr. Phil FINALLY addressed autism. My son has autism and it took a long time to get him were he is now . He is classified as HFA(High Functioning Autism). I must say when I watched the show I was dissapointed Dr. Phil dopped the ball. When watching the tapes of Luz, he never mentioned re-directing the behavior. When the child said all those horrible things to his Mom, no one mentioned he was simpy saying  "I am frustrated and angry .", Believe it or not , its not personal.When I tell my son no or displine him he says" I don't want Mommy any more. I am leaving to a new home." I am guessing Luz goes to school, no mention of the serivces there including placing grooming on the IEP. The tried and true therapies behavior, speech, occupational, and physical therapies which state medicaids pay for were glossed over  for alternative therapies that parents pay out of pocket. May I mention they aren't cheap and like any other may not work for all individuals. Of course Doug Flutie, Jenny McCarty, amd William Christopher, and Dr. Phil have the resources to pay out of pocket. I know a family that paid thousands of dollars for chelatin treatment that didn't work. Very dissapointing Dr. Phil

 
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